tag:blogger.com,1999:blog-15788427037904284612024-03-04T21:03:24.506-08:00CraterBrainc r a t e r B R A I NAnonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comBlogger64125tag:blogger.com,1999:blog-1578842703790428461.post-77852117716428631752015-05-27T17:49:00.000-07:002015-05-27T17:49:59.927-07:00WORLD MS DAY: Diagnosis anniversaries: what is the point in celebrating?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPA_-wxCa-m9_hkQRZm3eUCwnlpaHvxbsFOJBGssxTEcLFpa_8MAaF4zJSLfs4xBuZr2D0DIjmjsaTD5MQIz2tsavs8dKaYirIU2g9sXP-sXSntFxAoGcGIE2G8VBZTAvTVLLTJVpJqzE/s1600/world-ms-day-logo.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPA_-wxCa-m9_hkQRZm3eUCwnlpaHvxbsFOJBGssxTEcLFpa_8MAaF4zJSLfs4xBuZr2D0DIjmjsaTD5MQIz2tsavs8dKaYirIU2g9sXP-sXSntFxAoGcGIE2G8VBZTAvTVLLTJVpJqzE/s1600/world-ms-day-logo.png" /></a></div>
The 2-year anniversary of my confirmed diagnosis happened on May 15. Today is World MS Day. Today I share my anniversary-night reflections of what it has meant to live with this diagnosis for the last two years.<br />
<br />
It was an open night for me that Friday, and originally I had plans to invite friends over to celebrate. My house was going to be empty as my hubs was heading out of town and my daughter initially had plans.<br />
<br />
My husband thought it was weird that I should even want to celebrate. "Celebrate what?"<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiuBy7-ODTk3w_wNyHZD3EREu6ilTN4Sm4vHJWA_furbSZ_46n1FJavquMffJMsbHhFbLHUN1RutNRry2JSxHoTE7Ng5jG9gjQ0ZnRqYNO_jd6skyco_kk10nmgtCD5H9_60-AQ-AGqEY/s1600/fbpostaboutdxanniversary.PNG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="93" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiuBy7-ODTk3w_wNyHZD3EREu6ilTN4Sm4vHJWA_furbSZ_46n1FJavquMffJMsbHhFbLHUN1RutNRry2JSxHoTE7Ng5jG9gjQ0ZnRqYNO_jd6skyco_kk10nmgtCD5H9_60-AQ-AGqEY/s200/fbpostaboutdxanniversary.PNG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>More than 50 friends joined me in <br />a virtual celebration that night</b></td></tr>
</tbody></table>
Well. The fact that I'm doing well on my medication is a cause for celebration. The fact that I can see, can walk, can talk, have continence and my wits about me... these are all reasons to celebrate. I have won my battle with MS for two years now. Why wouldn't you celebrate? MS may be a curse, but living as close to normally as one is able to is not.<br />
<br />
As the week progressed, plans changed, and my daughter and I ended up grabbing dinner together, but my evening party ideas never made it to fruition. I'd made a last-ditch effort the night before to see who might be around, but it's pretty unrealistic to ask people with active families that late in the game to drop by for a barbecue.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY7_hCHOypL-KNGS_RvBK1aCs13eXa6GRIvriu35CRDP9FTjfsiITrYk0z6HjsKDaoQMukI-rtDz444CPvj5w40dO8hu5uUg_dNNknw9S8hXPNI6usInP8O3ArEBRTNAvqQrTiLvDgWX4/s1600/firepit.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY7_hCHOypL-KNGS_RvBK1aCs13eXa6GRIvriu35CRDP9FTjfsiITrYk0z6HjsKDaoQMukI-rtDz444CPvj5w40dO8hu5uUg_dNNknw9S8hXPNI6usInP8O3ArEBRTNAvqQrTiLvDgWX4/s320/firepit.jpg" width="240" /></a></div>
Instead, I ended up having a fire on the back deck; it was a lovely night for it, and an earlier skirmish with GI symptoms confirmed I was probably meant to be alone with my thoughts anyway. And that's fine, I'm a fan of quiet time, fire-watching and decompression.<br />
<br />
Earlier that day I had also encountered a troubling MS-related matter. I received yet another letter from my insurance company telling me they were not going to be able to continue to cover my current medication, Tecfidera, which costs about $60,000 a year.<br />
<br />
I didn't panic right away. There have been previous letters from them and it appears that someone in admin for the insurance company has done a fair job of bungling my account information since the beginning of the year. As a result, I keep getting these letters. Which has led to me making phone calls to numerous different offices, acquiring critical tracking identification etc., and feeling pretty sure, at the end of each foray into insurance inanity, that they have fixed the problem.<br />
<br />
Since then, I have contacted my neurologist and they are working on it for me as we speak. A lot of MS neurologists spend their time fighting for their patients in this way; it's a sad reality that this is what we have to go through just to receive the disease modifying therapies (DMTs) we need. This is a regular battle for people on any expensive maintenance medications for chronic diseases. There's a disconnect between what the patients request, what the doctor prescribes, what the insurance company will pay for--and what their individual protocols are, which vary widely--and what the pharmaceutical companies will do to help offset the costs of these medications.<br />
<br />
We have never paid $60,000 for a year of this medication, by the way. Nobody does. At worst, we have spent $30 a month and, at least in one of the scenarios I encountered on one of the phone calls I made earlier this year, I even qualified for free medication. I'm not sure what that was all about, but after my last phone call, I learned my payment had gone back up to $27 a month, which is totally fine with me. Keep the free meds for the people with zero insurance, I say.<br />
<br />
The fact is, despite <a href="http://www.npr.org/sections/health-shots/2015/05/25/408021704/multiple-sclerosis-patients-stressed-out-by-soaring-drug-costs" target="_blank">the alarming news about the continuing high cost of DMTs that has been at the center of controversy in the media recently</a>, hardly anybody I know actually pays the full amount. I doubt that anyone even pays half of that (which is still a bucketload of money...but, still...).<br />
<br />
But I got to thinking about what would happen if my insurance company really wouldn't cover my therapy anymore.<br />
<br />
That's a rather dark place to be. I am taking only one of three oral medications available for the treatment of MS. The other orals have higher risk factors and more side effects.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9G2zkpgf0lr5KS5vRU8zExv_12xNcOfwpEEdSOTJ1CNQLVT645rYO1SQcrLaONcjw3rOBaGpdb1PtyymXsXCRsKKFrhSL4AY4dljob0fqVRU8LInBO3clLnVIG9jJYJTLRQjSU5iM0VE/s1600/mstreatmentchart.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9G2zkpgf0lr5KS5vRU8zExv_12xNcOfwpEEdSOTJ1CNQLVT645rYO1SQcrLaONcjw3rOBaGpdb1PtyymXsXCRsKKFrhSL4AY4dljob0fqVRU8LInBO3clLnVIG9jJYJTLRQjSU5iM0VE/s400/mstreatmentchart.jpg" width="400" /></a></div>
The rest of the options are variations which require injections, and there's also a monthly chemotherapy option. Beyond that, we're talking about hematopoietic stem cell therapy, which costs just as much. And that's about it.<br />
<br />
Notice, I'm not talking at all about the many other medications one with MS must also take to alleviate symptoms. While these are not nearly as expensive as the DMTs, they can accrue a high bill at the end of the year. Some are prescriptions, some are OTC, some are vitamins, some are supplements. Only some of these are covered by insurance. They are tax write-offs, but that doesn't sweeten anyone's pot.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTJOhtSxQBQ23O3i9PDlvRrVHPe3PCl-CKD5eb8Ek66l_vFfBul1soZiME8gOcTXV4hVF8G6nQxup-hVZxvE7fCvKKfLCNM6mr5d_XUH9wKbguxsFr6xn9mKWpqxWtqWt8puI2FvikSvM/s1600/raccoon2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTJOhtSxQBQ23O3i9PDlvRrVHPe3PCl-CKD5eb8Ek66l_vFfBul1soZiME8gOcTXV4hVF8G6nQxup-hVZxvE7fCvKKfLCNM6mr5d_XUH9wKbguxsFr6xn9mKWpqxWtqWt8puI2FvikSvM/s1600/raccoon2.jpg" /></a>So that night, before the fire, with the resident raccoon keeping me company a few yards away, I asked myself a lot of questions that most people only whisper to the shadows.<br />
<br />
<ul>
<li>Would I be willing to take higher risks with the other orals? </li>
<li>Would I be willing to try one of the injectibles? </li>
<li>What would happen if I could not tolerate any of the other medications? </li>
<li>What would happen if I didn't take any medication?</li>
</ul>
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I rather like my lot right now, truth be told. I mostly tolerate this drug (as long as I take it on a full--and I mean full--stomach) and it's portable, doesn't require refrigeration. The side effects are flushing, which I can abide, and GI problems, which mostly don't bother me as long as I stick to the full-meal plan I've already established. It only took me failing that plan once to learn that lesson.<br />
<br />
But without it, I might consider the other orals. I'm not thrilled by these options, though: they can lead to cardiac problems, vision problems, increased predisposition to serious infection, liver damage and other issues that currently I don't suffer. <br />
<br />
I don't treasure the thought of injecting myself daily; I've heard of injection site reactions and scar tissue and I'm not prepared to give up my short-sleeved shirts and shorts in the summer to cover up the evidence. That's not vanity talking; I do not tolerate heat well and really do need to stay cool as an MSer. High heat just amps up the systemic inflammation in our systems, and this can lead to relapses. <br /><br />Some of the injectibles do not require refrigeration, and that is a plus. And some of them have zero side effects beyond injection site issues, and that might be okay. But the others have lots of risks and side effects that I'm just not desperate enough to engage in. <br /><br />The chemotherapy option works by visiting an infusion center like a cancer patient does, getting a month's supply of therapy intravenously, then spending the next few days feeling like you have the flu, and then (ideally), you feel near-normal again for 3 weeks before you go back in and have it done all over again.<br />
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Remember, these are lifetime medications. I must take them as long as I have MS.<br />
<br />
Or must I?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV7suhiFM52b2GRG7smutwHQpPhGsP8w38LkT_AAAFVlXqTFIh-GwEscKUfEz-P4BhFyzNIZuz_UtgZAPg5dEaod8eiAvFe4HlqUq8UBqctqphW-F49RRrH3FyxfVEyy7J2RPRzburTek/s1600/mshug.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV7suhiFM52b2GRG7smutwHQpPhGsP8w38LkT_AAAFVlXqTFIh-GwEscKUfEz-P4BhFyzNIZuz_UtgZAPg5dEaod8eiAvFe4HlqUq8UBqctqphW-F49RRrH3FyxfVEyy7J2RPRzburTek/s1600/mshug.jpg" /></a></div>
Here's the deal. My MS appears to be a slowly progressing form. That's good for me. I have had symptom clusters going back to my late teens and it's possible that in the summer of 1975, I might have actually experienced its onset: that was the only time I have ever encountered what is known as the MS hug (a vice-like spasm that squeezes your ribcage and makes it nearly impossible to breathe) and not longer after, I was admitted to the hospital with a mysterious UTI, something unusual for an otherwise healthy, active 10-year-old girl.<br />
<br />
If onset occurred for me in 1975, that means I have had MS for 40 years. Even if not, the symptom clusters which I now know were actually MS relapses have occurred several years apart since then. It didn't occur to me to look into these symptoms until 2013, when I began to really not feel right but could not pinpoint why, and that was when I was diagnosed. MRIs, bloodwork and a lumbar puncture, plus my history and symptoms, made my diagnosis easy. I am one of the lucky ones in that regard.<br />
<br />
This is good because MS progression mostly occurs at the beginning, following onset. This is the time when it is at its most aggressive. Which is to say that I could live for 40 more years and not really progress any worse than where I'm at right now.<br />
<br />
Even if my onset wasn't at age 10... even if my onset was later, say around 2001-2003, when I experienced very noticeable symptoms that confirm a demyelination phase (though I didn't put the pieces of the puzzle together at that time), I've still had a dozen plus years to progress and, again, I'm not much worse now than I was then.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN5-_c76eB9lU_K_Qs0d32KdXGm029IE_XSAPKniEIh2xOUN6Y7p5vyR4jlpIb0jf2f-kkgHeqDoC87z84skxYhYo62aSKM2qcg4Bmz4xHV3Hnw4fgKPRjm6norTOo0kWVsoaykTu_aNg/s1600/demyelination_ms.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN5-_c76eB9lU_K_Qs0d32KdXGm029IE_XSAPKniEIh2xOUN6Y7p5vyR4jlpIb0jf2f-kkgHeqDoC87z84skxYhYo62aSKM2qcg4Bmz4xHV3Hnw4fgKPRjm6norTOo0kWVsoaykTu_aNg/s1600/demyelination_ms.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>Demyelination is caused by the immune system <br />attacking nerve cells in the central nervous system,<br />which results in the brain being less able or unable<br />to send critical messages to all other parts of the body.</b></td></tr>
</tbody></table>
<br />
Some people don't take medication at all for MS. For some, the side effects are intolerable. For others, fear of side effects or not understanding how they work or not trusting researchers or feeling like a guinea pig (which, truth be told, is what we are) is enough reason to say no.<br />
<br />
Research still bears out important data that show that, the sooner you treat your MS with a DMT, the less likely you will relapse or progress, and if you do, it will be less severe. This is really the name of the game with MS treatments: stop the (M)on(S)ter before it makes you worse.<br />
<br />
Also, if you quit taking your DMTs, the odds that your symptoms will return and worsen are higher than if you had just stayed on course.<br />
<br />
Other therapies are in the pipeline but even with great results in large, longitudinal studies, they still won't be available for years.<br />
<br />
There are also those people who swear by special diets and subscribe to as-yet-unproven theories about nutrition as the key to curing MS. I'm a firm believer in better self-care but I don't much believe in diets that cure disease. Healthy eating, exercise, quality sleep and drinking lots of water will make all of us feel better, regardless what ails us. But to say the paleo or other restrictive diet is a cure is misleading because there's no legitimate scientific basis for those claims.<br />
<br />
Anyway, I don't eat poorly. I'm a cook, I eat whole foods, I'm not a junk food junkie, I don't overdo the sugar, I favor organics. There's really not much more I can do in the dietary realm to improve what I'm already doing, or at least not anything I'm really willing to do. I love to cook and eat good food and I do not believe that cutting out entire food groups to "heal" myself is a worthwhile idea. Neither does my MS neurologist or my naturopath.<br />
<br />
Quality of life matters, and if MS were to take the pleasure out of cooking, herb gardening and eating, then for me, MS has won.<br />
<br />
So what happens, then, if I decide to not take any medications at all?<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-1zDOwfp2VzEF-LEToVoZLfldks2relRhdQVi7jtXCDtpVYvzhqMH2AtZ-_DJZQRx8vIywbQA2x2tVeEN3gwbdxdVV_rDG9QEHumgs1XlMc4EfwXuBDD0cOIUQppc8o1QN2Ic4btDEzs/s1600/nowheelchair.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-1zDOwfp2VzEF-LEToVoZLfldks2relRhdQVi7jtXCDtpVYvzhqMH2AtZ-_DJZQRx8vIywbQA2x2tVeEN3gwbdxdVV_rDG9QEHumgs1XlMc4EfwXuBDD0cOIUQppc8o1QN2Ic4btDEzs/s200/nowheelchair.png" width="200" /></a>Well. Though I am doing okay on this current medication, it's not clear whether my current medication is to credit for my remission. Maybe this is just my pattern and my body has already worked its way naturally into remission. Maybe I won't have another relapse for 10 more years, and even then, maybe it won't even be that big a deal. I will be 60 then, and people who are 60 have all kinds of things happening to them as they age. That's normal and wouldn't necessarily mean I would be blind or in a wheelchair or wearing Depends.<br />
<br />
So it could be that I am one of those people who might be able to get away with not taking medication solely on the basis of slow progression. And that would be a lucky thing indeed; I know many who have disease onset and it's all downhill from there.<br />
<br />
The other thing that could happen is that, once off this medication, I begin to develop more symptoms and relapse, which would also be perfectly believable as I am a person mitigating a Sandwich Generation lifestyle: smashed between the major demands of busy teenagers and elderly parents who are no longer independent. The stress is unbelievable, sometimes.<br />
<br />
They tell you to avoid stress if you have MS, but what does that mean? Skipping town? That would be the only way to avoid stress at this stage in my life.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFv_9w39LQhbtkOWukHJYFpXdrd9dhCMbu3II64NI7ZSwGHdK3-5QKq1kUgA6yjgvsn1MCIQoVqX1tPPl6XaGi59RbNA21tbvxq-cpVt8gTRgfb6aAZOIS99tnPHXRkR8mgL1PrntOHmg/s1600/sandwichgen.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFv_9w39LQhbtkOWukHJYFpXdrd9dhCMbu3II64NI7ZSwGHdK3-5QKq1kUgA6yjgvsn1MCIQoVqX1tPPl6XaGi59RbNA21tbvxq-cpVt8gTRgfb6aAZOIS99tnPHXRkR8mgL1PrntOHmg/s320/sandwichgen.jpg" width="320" /></a></div>
Until my kids have drivers licenses, we are stuck in the constant queue of arranging or giving rides, carpooling etc. Our kids are extremely active; this is not a small problem to manage, but something that practically requires a family meeting every night. Which in and of itself is a challenge since we manage to maybe all be in the house at the same time about twice a week (aside from sleeping).<br />
<br />
And we ask for help for caring for our elderly parents, but you would be surprised at how much of the geriatric system relies on family members to do the work of transporting, advocating, shopping, providing emotional support, even feeding and bathing them, even when they are residents in a skilled nursing facility where they are already paying top dollar <i>presumably </i>for the dispensing of these services.<br />
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In any given week, we are tasked with driving somebody somewhere a minimum of 8 times a week, not counting trips to the hospital for the aging parents and trips to the activities for the kids. For two people who do not participate in a daily workday commute, we put in a lot of hours and miles driving.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSwRzgRY45v5TtVsSgokHECWsWXimD8HlMTO2I-1Hf_17DuSJWvP0ZdixB7bUPMgrJcfU8O92IpZtqkF-KiJV8wbFQnhDUE-Pd65fFIO-MT9s-w9xteAWHHYVyc7hp9z16mDIaVN-7yJI/s1600/timemagguineapigs.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSwRzgRY45v5TtVsSgokHECWsWXimD8HlMTO2I-1Hf_17DuSJWvP0ZdixB7bUPMgrJcfU8O92IpZtqkF-KiJV8wbFQnhDUE-Pd65fFIO-MT9s-w9xteAWHHYVyc7hp9z16mDIaVN-7yJI/s200/timemagguineapigs.jpg" width="151" /></a><br />
Regardless, the challenge for me is far beyond managing the stress of life; it's deciding what I am willing to do: undergo expensive medical therapies as a guinea pig and hope they keep me healthy, or take a risk and see what happens without the drugs?<br />
<br />
Right now, taking the oral medication is an obvious solution: few risks, and good tolerance, and it's not hard to administer. But without it, what is the risk/benefit ratio? Do I have a bad enough case of MS to justify taking meds that may actually make me feel worse even if they halt progression? Is my MS ever going to progress that severely? The odds seem to say no. But what if it does? Will I live with regret knowing I had options but, because I didn't use them, ended up getting worse with a disease that has impacts that are not reversible? I've heard those cautionary tales, too.<br />
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The raccoon gave me no answers, nor did the fire, but it was a still a celebration, with a point, and I hope in a year's time, I'll have come closer to an answer... by choice, and not by force.Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-47868701002565248212015-04-03T18:45:00.002-07:002015-04-03T18:45:13.901-07:00MS Warriors are Heroes, tooAfter yesterday's rant, I found this today. Made me feel a little better. Haven't received any hate mail yet either after <a href="http://mycraterbrain.blogspot.com/2015/04/rant-can-you-put-away-your-pink-ribbons.html" target="_blank">I dissed the pink ribbon establishment</a>. Maybe the trolls are on Spring Break? LOL<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKcwIA061a6ejwtKBmxnRHL-MXX7hskYi5XWSwNX_04VPHyyOfKaPE_q9D-EJOVy0-6iIDndpW8hBIjt3jM2EBAU-n-uu8G-W6rBqyTqmE0BKcIV52_xqoTSKsNAKM2-BEOF7POPnAR-Q/s1600/IbattleMS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKcwIA061a6ejwtKBmxnRHL-MXX7hskYi5XWSwNX_04VPHyyOfKaPE_q9D-EJOVy0-6iIDndpW8hBIjt3jM2EBAU-n-uu8G-W6rBqyTqmE0BKcIV52_xqoTSKsNAKM2-BEOF7POPnAR-Q/s1600/IbattleMS.jpg" height="400" width="400" /></a></div>
<br />Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-90658364963396612372015-04-02T14:01:00.000-07:002015-04-02T14:01:30.848-07:00RANT: Can you put away your pink ribbons just this once so we can get some MS awareness here, please? <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYPPiCvXMlQk6pmhbo7anFdGOvOQPpAieTDWo2vEPU7BMaNMjPXSb0hBkWGkHPQ_2x9pxKN-tVzpumkIKtidTjfX68iEzCB-vPO6uOXwhXo3tHuNTwsVxbxjkDWW7XqK-P_89AsLbL_gQ/s1600/not-cancer.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYPPiCvXMlQk6pmhbo7anFdGOvOQPpAieTDWo2vEPU7BMaNMjPXSb0hBkWGkHPQ_2x9pxKN-tVzpumkIKtidTjfX68iEzCB-vPO6uOXwhXo3tHuNTwsVxbxjkDWW7XqK-P_89AsLbL_gQ/s1600/not-cancer.jpg" height="219" width="320" /></a></div>
This is not really safe to post anywhere else. Gonna be honest here, and I do expect some backlash, so please, go ahead, commence with the hate mail, but it needs to be said:<br />
<br />
If I, as an MSer with a progressive, chronic disease, get another pitch to donate to breast cancer research from my friends, I might have to turn from a healthy pink to an ugly orange.<br />
<br />
I'm generally a compassionate person, but the constant onslaught of friend requests for my money for breast cancer is becoming rather annoying and insensitive, considering they <i>know </i>I have MS. Only one of them (that I'm aware of) has given any time or money to MS research, in the meantime. Bless her heart, she has at least two good friends with MS and has been showing support for them from Day One. She gets it.<br />
<br />
Not everyone else does. The pink campaign is so effective it largely wipes out other campaign attempts in its path. Good for them, but screw the rest of us.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNGtL-aB0gvsfyI6a60y4VGl7xewrOMOwG5oYJcIEZdcWrVhJE7arAU3lG5mJNk8tAkd1IkeKPMZ6gK_mHwq-uJydOki1671CeRAu4DSiao1rpCeHF4FYUmJcyGFc3fNK23regLgtB1EI/s1600/PRISM.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNGtL-aB0gvsfyI6a60y4VGl7xewrOMOwG5oYJcIEZdcWrVhJE7arAU3lG5mJNk8tAkd1IkeKPMZ6gK_mHwq-uJydOki1671CeRAu4DSiao1rpCeHF4FYUmJcyGFc3fNK23regLgtB1EI/s1600/PRISM.jpg" height="200" width="150" /></a>What's worse... the breast cancer campaign has started adopting the phrase "orange is the new pink" to encourage cancer patients to eat more orange fruits and vegetables. I'm all for that, but orange is the MS campaign awareness color. Please, you already get the lion's share of research funding... do you really need to steal our campaign awareness color, too?<br />
<br />
So the MS campaign introduced the prism ribbon instead, because MS is considered a multi-faceted "snowflake" disease, with no two cases alike. No wonder we still don't know what causes it, no wonder we still don't have a cure. It's a lot harder to study.<br />
<br />
And yet, who is wearing the prism ribbon? Hmm?<br />
<br />
(Oh, and PS: orange is the awareness color for Leukemia as well. Another kind of cancer.)<br />
<br />
I have friends who have <i>survived </i>breast cancer thanks to tons of research, chemo and surgery, none of which have been able to cure MS. I do not dislike these people or judge them for surviving; I'm glad they are here among us, as they are wonderful people. I say they <i>are </i>because they are <i>alive</i>. That sounds suspiciously, to me, like a <i>cure</i>.<br />
<br />
What I'm not so glad about is that breast cancer awareness seems to have monopolized the medical charity efforts in the US in ways that are simply unfair to so many others whose disorders won't "kill them," but still face, rather than an immediate death, the slow and painful and often humiliating degeneration of whole body systems (nervous system, immune system, endocrine system, lymph system, muscular system, digestive system, sensorimotor system).<br />
<br />
Our brains are shrinking and there ain't shit to be done about it except for spending $60 thousand or more annually on a single medication that may or may not do anything while heaping on the PT bills, the MRI invoices, and the costs of ongoing visits to multiple docs for symptoms, blood work and treatments from specialists who may be tracking your progression as part of research. Let's not even go into the side effects of our lifelong chemotherapy, which is basically what MS treatment is. <br /><br />(Some MSers do, in fact, get their treatments in infusion centers right along with cancer patients. Others take daily painful injections and some lucky souls get to take their meds orally now, thank goodness, albeit on a full stomach to fend off major gastrointestinal issues. This is not baby aspirin, peeps. MS meds offer many of the fun side effects that cancer drugs offer as well, like alarmingly discolored or unpleasantly foul urine or an extreme, full-body burning, itching sensation that made one friend of mine in Chicago strip off all his clothes and go outside and roll in the snow.)<br />
<br />
Let's face it, MSers are <i>guinea pigs. </i>Not because scientists hate us or conspire to keep us sick, but because they don't have enough money to do the research necessary to stop our disease in its tracks, though the efforts and the passion are there to do it.<br />
<br />
I did not post dailies this year for MS Awareness Month this March because I couldn't afford the time away from work that it would require of me. So allow me to do some of that e<i>du-ma-cation</i> here, sharing some examples of ordinary people with MS and how it doesn't <i>kill </i>them, but <i>neither </i>does it make them <i>stronger</i>:<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNCIPJVrBiAgJHoSqShKDyw8VeKWwfsLbEpUPhxGv9c33rT1U6onK0IvURV8xPcg9kYVdPMyIQ97JDhAytp5g6QLP48nFfZa986JwaoXSHHQwxGDof89nHNje9edJQsvnQXWMZDsPVItE/s1600/Employment+graph+-+MS+Register+490+x+305.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNCIPJVrBiAgJHoSqShKDyw8VeKWwfsLbEpUPhxGv9c33rT1U6onK0IvURV8xPcg9kYVdPMyIQ97JDhAytp5g6QLP48nFfZa986JwaoXSHHQwxGDof89nHNje9edJQsvnQXWMZDsPVItE/s1600/Employment+graph+-+MS+Register+490+x+305.jpg" height="198" width="320" /></a>* A woman in her 30s with a colostomy bag due to perpetual incontinence, three school-aged kids to raise in a single working parent scenario, who's just discovered that she now has failing balance and vertigo issues which compromise her ability to keep working as a mail carrier <i>or</i> safely care for her children.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLeo6HkWoXCL3o-LJ6xEXtb5M9BESE1WxQvGAhhxvBZaAM1dgGne6egQD1I2tGaM4JuE2Oh4RkKc2sRYXAT1j8pKHQoi3W-J5Av9nr0evS73OGVUXp-LJkOVu-eojvgJorNQLp-drUpaM/s1600/cost+of+MS.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLeo6HkWoXCL3o-LJ6xEXtb5M9BESE1WxQvGAhhxvBZaAM1dgGne6egQD1I2tGaM4JuE2Oh4RkKc2sRYXAT1j8pKHQoi3W-J5Av9nr0evS73OGVUXp-LJkOVu-eojvgJorNQLp-drUpaM/s1600/cost+of+MS.jpg" height="320" width="320" /></a>* A man in his 20s with a high school education who worked in construction but who now has no ability to walk, who can't get SSDI because his cognition is still good enough, but who can't work anymore at what he knows best. And even if he did get a job, it would be at minimum wage and he would still live below the poverty line even after pharmaceutical companies gave him his meds for free.<br />
<br />
* A lifelong advertising executive who has suddenly lost her ability to speak and write, the two very skills she requires in order to work. Maybe she will receive some economic benefits from early retirement due to disability in the private sector, but she will lose the one thing that gave meaning to her life: her career. Now what will she do? She can't go back.<br />
<br />
None of these people can go back to normal. MS is not temporary. You don't just take a year or two off to fight it, then win, then come back.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpaat7G4stXVNe_i5AwSpQZzCTAPo5XdFA9PwYzIMeXo-f5BljShIM4-4L3RVMFLrUbUYH5aGA6PYplpwFdAgJkYgTGrToCMeesqdM2s6Zdq1D5cIKVNQE_0jJpRw2BjaI7zTYKuOrbK4/s1600/ms+onset+age.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpaat7G4stXVNe_i5AwSpQZzCTAPo5XdFA9PwYzIMeXo-f5BljShIM4-4L3RVMFLrUbUYH5aGA6PYplpwFdAgJkYgTGrToCMeesqdM2s6Zdq1D5cIKVNQE_0jJpRw2BjaI7zTYKuOrbK4/s1600/ms+onset+age.gif" height="248" width="320" /></a></div>
Keep in mind that MS is not a disease that comes from old age or poor lifestyle habits. It strikes people mostly between the ages of 10 and 50; these are hardly feeble individuals who've already lived a long and happy life. Researchers have not yet found any proof that suggests a poor diet, risky behaviors, or a lifetime of smoking or drinking are behind the cause (which is, actually, found to be a cause behind many cancers). Right now, they find environmental factors (like living in the north), viral theories and potential genetic propensity among the most likely candidates for causation. <br />
<div>
<br /></div>
We "survive" MS (as do many others with different chronic, disabling diseases like Type I diabetes, clinical depression, ALS, cystic fibrosis, narcolepsy etc.), by "living with" illness, which can mean a lot of disability, pain, depression, failed treatments and social ostracism. We "survive" because we have no other option.<br />
<br />
Imagine telling a cancer patient to just "power through it," "buck up" or "learn to live with it."<br />
<br />
That's what MSers hear everyday. That, and... "At least it's not cancer."<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPQJcgGqOmnZqPlVEd4nuIRUCSb8VY-yOLYXaZCl0XTjQHcrcPrR4zwYhWrsLh1snGp1YiWLj9o0iZpz0eN4qutZKit8dYvW051NwRtovug2m0rLWAjIV1TK52j9UHMgUE3MFZX1U5470/s1600/multiple-sclerosis-etiquette-guide_54007e140d64c_w1500.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPQJcgGqOmnZqPlVEd4nuIRUCSb8VY-yOLYXaZCl0XTjQHcrcPrR4zwYhWrsLh1snGp1YiWLj9o0iZpz0eN4qutZKit8dYvW051NwRtovug2m0rLWAjIV1TK52j9UHMgUE3MFZX1U5470/s1600/multiple-sclerosis-etiquette-guide_54007e140d64c_w1500.png" height="640" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See <a href="https://www.yourlifeprotected.co.uk/news/multiple-sclerosis-guide/" target="_blank">original infographi</a>c to read more <br />about appropriate conversational<br />etiquette for those who don't have MS</td></tr>
</tbody></table>
Yes, I know that with cancer, once you have treated it, you have to go back in and get checked once it has been conquered... that the threat is always there. I have a friend who beats it only to find her bone marrow invader has come back. I had another friend who beat one kind of cancer only to discover he had a different kind altogether just a few months or a year later, not metastasized from the originating cancer, but a new kind of monster.<br />
<br />
Yes, I know you can die from cancer. But MSers, who don't die from MS, die from dumb things all day long because of MS. A little infection in their nailbed that becomes sepsis because of ongoing lymphopenia. Sudden heart failure in the normal healthy heart of a 20-year-old because the connection between the central nervous system and their heart stops working. A fatal burn while trying to cook Sunday dinner for the family. Gangrene from a toe injury an MSer may not even be aware they have until it's too late.<br />
<br />
Please consider this: My mom was a lung cancer survivor for 20 plus years. She died of pneumonia, no cancer to be found in her body. Were I to ask her today how much she lived in fear of the cancer returning, she would have said, "One day a year, for my checkup." I asked her often whether she was afraid it would come back and she told me, "not anymore."<br />
<br />
There is a luxury to that which can never be enjoyed by someone with MS.<br />
<br />
Meanwhile, she lived with excruciating degenerative joint disease and COPD, neither of which can be treated like cancer. She and I had much to commiserate. These are also conditions you must "power through" or "learn to live with." MS isn't the only miserable state of pain and dis-ease one can be in, so I can imagine that my railing against the "need" for endless breast cancer funding at the expense of overwhelming need elsewhere doesn't just resonate with MSers, but with all kinds of others who can't get the relief they need.<br />
<br />
Interestingly, those with MS who then also get cancer? Probably not going to survive. The immune system is already ravaged; cancer may be opportunistic, but so is autoimmune disease. If the system is already running on fumes, a few cancer cells will make quick work of an MSer; quick progression of cancer in an MSer can mean they won't even have the luxury of something like a double mastectomy. Seriously. A double mastectomy sucks, to be sure, I know more than one person who has gone through this and come out okay. It tooks some therapy and reconstruction, but they managed and moved on. But it's less likely that will be an option for an MSer.<br />
<br />
You know what also sucks? Cutting off one's feet due to diabetic neuropathy and having to walk around in prosthetics or being forced into a wheelchair because of it. And what about the 20-something person who has lost the ability to swallow? They will be spending their day on a feeding tube, rather than living a joyous active life as a young adult, while someone who has had a double mastectomy is out running a marathon for a cure. Or the person who suddenly wakes up and can't see, who did not get a proper diagnosis in time despite the distinct connection between optic neuritis and MS, because doctors aren't knowledgeable enough about MS to point her in the right direction, has to quit the lifetime career she loves because of it, while a person who had had a double mastectomy will be getting dressed for another day at a job she could take or leave.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW3pq5Yk3huCe-dbzL19sytThE_NUZEHOFYxP6oweifHCtadI6fcO6yO2Fx1GGoTFOM8ItNRBoYYrQmIKqlm7mB1b80H_wy4XaOI7VrZI83u5_TO7adiK1HohyfakALzNrVmDHVdsMuyw/s1600/superhero+cancer.jpg" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW3pq5Yk3huCe-dbzL19sytThE_NUZEHOFYxP6oweifHCtadI6fcO6yO2Fx1GGoTFOM8ItNRBoYYrQmIKqlm7mB1b80H_wy4XaOI7VrZI83u5_TO7adiK1HohyfakALzNrVmDHVdsMuyw/s1600/superhero+cancer.jpg" height="320" width="320" /></a>But we have made the cancer survivor a hero, all the same. This isn't at all that fair to those who don't survive cancer, by the way, because somehow that implies they didn't try hard enough, they were failures as warriors. My heart goes out to them, including relatives and loved ones. My friend JL fought several years and several battles with cancer before succumbing. He didn't die in vain, having traded his privacy, even his own genome map, to the world to help fight cancer. To me, <i>that </i>is heroism, not racking up big bucks in some ribbon campaign and women walking around in pink tennis shoes.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcG_BOMq4dmNsbTN83_7mQU-7QN92kT5Ai4WBHK8SCHZ_dsTZaGUBJ1LOjSGp1EBtHSMvRkDi865OO5ZS6rEb-SzOJu3ZAqANjQ6lQpk6ZIwnEemsURVPn8p2fnii7GUcYoSjPZQokvno/s1600/tryharder.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcG_BOMq4dmNsbTN83_7mQU-7QN92kT5Ai4WBHK8SCHZ_dsTZaGUBJ1LOjSGp1EBtHSMvRkDi865OO5ZS6rEb-SzOJu3ZAqANjQ6lQpk6ZIwnEemsURVPn8p2fnii7GUcYoSjPZQokvno/s1600/tryharder.jpg" height="320" width="212" /></a>But who can be the heroes of MS? MSers with serious, aggressive symptoms and progression are forced into hiding; they are incontinent, blind, lame, they can't carry a conversation because of cognitive dysfunction and speech problems, their muscular spasms and inability to manage sensory overload make it impossible to appear heroic in a world which quickly places the pink diamond crown on a breast cancer survivor who has just completed a triathlon.<br />
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If only an MSer <i>could </i>do this. Let's be clear: while a minuscule handful <i>can </i>do this, the vast majority <i>cannot</i>. It is not because they aren't trying hard enough, or that they aren't strong enough warriors, it's because they <i>cannot</i>.<br />
<br />
You would not ask someone with a broken leg to run laps. That would not be fair.<br />
<br />
You are not a hero when you have MS. You are treated like a criminal sometimes, however, or a system abuser, or lazy, or a freak, or placed into some other box despite all the other ways you contribute to the world as worker, parent, spouse, activist. You try to hide your disease when you can just so you can be treated like a regular person; many MSers lose friends and jobs and lovers once they come clean. It's all wrong, I know, but it's not an exaggeration to call out the reality that it happens more often than good taste allows.<br />
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I need to point out here that I have amazing loved ones who <i>don't </i>do this, but those who suffer from multiple sclerosis experience daily how clueless many others are about MS, including ageist abuse from older folks mocking younger people with assistive devices or handicapped passes, job discrimination based on ignorance about how MS does or doesn't affect our abilities, and the absolute nightmare that the SS/disability application can be, not to mention the dismissiveness of some medical professionals and the commonplace issues MS brings with sleep disorders, anxiety and depression.<br />
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With cancer, there's always the possibility of ridding yourself of it, of never having to live with its unpleasant, disabling and sometimes embarrassing symptoms for decades with no cure. It is temporary, for most. A few years out, at the worst.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcc4sMuOJTKxKFmL02euS2fDHeQErAvWghazJH6eZryRE1SbPrO8pPp2sfua3Ru3c4T2a6vcA39ejMiB0VCj6dUFAySR6Q3fpo5i4LienkXk_9fMr-8SQYrQD7MaD17KWt6WyfdQRAXP4/s1600/cancersurvivors.jpg" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcc4sMuOJTKxKFmL02euS2fDHeQErAvWghazJH6eZryRE1SbPrO8pPp2sfua3Ru3c4T2a6vcA39ejMiB0VCj6dUFAySR6Q3fpo5i4LienkXk_9fMr-8SQYrQD7MaD17KWt6WyfdQRAXP4/s1600/cancersurvivors.jpg" height="640" width="240" /></a>Yes, people <i>die </i>from cancer. But at least cancer has the decency to be done, it does not cause suffering for *decades* like MS does, especially for those who are struck with a DX in their 20s and face a solid 60 years with the likelihood they will never get better but <i>worse</i>.<br />
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There are people with MS who live daily with something called suicidal pain. Let's talk about how death arrives for the MSers. When you are suddenly diagnosed with MS, something <i>does </i>die. Your life as you knew it is <i>gone</i>. You do not get to go back to it. <i>Ever</i>. Even breast cancer survivors I know have said they are <i>back to normal.</i> For MS, that is <i>never </i>possible. Not without a <i>cure</i>.<br />
<br />
This isn't a cancer patient's reality. I have friends and family who have had breast, lung, bone, blood, prostate, colon, liver, esophageal and oral cancer, and doing some quick math yields that <i>95 percent of them survived</i> and are cancer free <i>today, </i>or if they did die, they died cancer free.<br />
<br />
Ask medical professionals, they will also point to the great war against cancer and how it has really turned things around when compared to just 20 years ago. In fact, there are more cancer <i>survivors </i>today than there are MSers. Period.<br />
<br />
These are not the odds we enjoy with MS. We get the experience of helplessly watching our own progression with no means to stop any of it aside from 5-figure medications and lifestyle changes, which only work for some. We have <i>zero </i>surgical options. Only those with RRMS even have a slight chance to delay progression with meds; try to imagine life for someone with PPMS or SPMS, the aggressively progressive forms of MS which have <i>zero </i>pharmaceutical options. All these MSers get is advice to "power through it" or "learn to live with it" even as one system after another fails them. People with RRMS can gradually progress to these forms as well, so it's not all hearts and flowers for them either.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsRrpWAIYk3yOaS_fcLw_b3U6WGG07LEQWLYI5uPMpMp-PECeT7sDwNWLCd53tS5GLtQmE_2jSFg-JU_JK1zaOjHTcBByMjFqyg4Xql98rsSFisUB31Qn8E0k5m4OEM1p-Ls_WenVlVlE/s1600/initialsymptoms.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsRrpWAIYk3yOaS_fcLw_b3U6WGG07LEQWLYI5uPMpMp-PECeT7sDwNWLCd53tS5GLtQmE_2jSFg-JU_JK1zaOjHTcBByMjFqyg4Xql98rsSFisUB31Qn8E0k5m4OEM1p-Ls_WenVlVlE/s1600/initialsymptoms.png" height="250" width="400" /></a>Despite the large awareness campaigns generated via the National Multiple Sclerosis Society, MSers definitely still have to deal a lot more with public ignorance about the disease. This has to change.<br />
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I mean, when you lay on the couch all day with the unending fatigue and muscle weakness of MS, you are perceived as lazy or a system abuser or wantonly depressed, but if you have breast cancer, where are your servants? You are a queen or a king. People come out in droves to cheer outside your window. For MSers, we get crickets.<br />
<br />
What we don't get is adequate research money from federal funding agencies like the NIH. Breast cancer research in 2013 was given $657 million in funds for research by the NIH (this doesn't count the $267 million <a href="http://ww5.komen.org/uploadedFiles/_Komen/Content/About_Us/Financial_Reports/Susan%20G%20Komen%202013%20Annual%20Report.pdf" target="_blank">granted by the Susan G. Komen foundation</a>, whereas multiple sclerosis was given $112 million in research money from the NIH, plus <a href="http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Financials/Final-2013-Annual-Report.pdf?ext=.pdf" target="_blank">$48 million from combined efforts by the NMSS</a>.<br />
<br />
<a href="http://report.nih.gov/categorical_spending.aspx" target="_blank">Not making this up</a>.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrMbsVanb-Dn8BpK0QdjgERVDo1H8gxyZxmSM-TTbeIQV_O542o_twdlaT2TBJBZvu1tle4cfZqp3NIRlEmHWBZpFok0DrwgHOUIpDWepGaA132WQeQkjURk0bw-6g_Tk_Ef-Fl61v5W4/s1600/snowflakedisease.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrMbsVanb-Dn8BpK0QdjgERVDo1H8gxyZxmSM-TTbeIQV_O542o_twdlaT2TBJBZvu1tle4cfZqp3NIRlEmHWBZpFok0DrwgHOUIpDWepGaA132WQeQkjURk0bw-6g_Tk_Ef-Fl61v5W4/s1600/snowflakedisease.jpg" height="200" width="200" /></a><b><span style="color: red; font-size: large;">There is a significant difference between $924 million and $160 million, is there not? Like, a more than fivefold difference?</span></b><br />
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Maybe it makes me morally bankrupt that I should be annoyed by the breast cancer campaigners among my friends, who really must have forgotten all about me and my MS or who don't care that I already have an incurable disease.<br />
<br />
But until they give at least as much of their money to MS as they do to breast cancer research, and spend some time at an MS walk or wear orange (or prisms! or snowflakes!) instead of pink all the time, I can't really be motivated to help their cause because, the way I see it, they've got all the help they need, and me and my peeps? Not even close. The numbers don't lie.<br />
<br />Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-36574768103092318272015-01-07T08:00:00.000-08:002015-01-07T08:00:11.269-08:00Napping. I can relate. [MS Fatigue]<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHy72ihlih-0wssUHvhWCNAJfKFxvbs-WIqoSB-0x5qLhE0jQbuC205m6wERoKAGKfKO_lvl5_cEleiZUwZe2LLu3CTni1tVrBzsId26pJPQ8NRsvo_2jehCZG3o-lPTDNLibxH7eXVEE/s1600/nappingonplanks.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHy72ihlih-0wssUHvhWCNAJfKFxvbs-WIqoSB-0x5qLhE0jQbuC205m6wERoKAGKfKO_lvl5_cEleiZUwZe2LLu3CTni1tVrBzsId26pJPQ8NRsvo_2jehCZG3o-lPTDNLibxH7eXVEE/s1600/nappingonplanks.jpeg" /></a></div>
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I had unresolved fatigue and excessive daytime sleepiness for years before my diagnosis and was even considered as a candidate for narcolepsy at one point (which didn't bear out... leaving me with the far more dubious distinction of being an idiopathic hypersomniac). My multiple sclerosis diagnosis allowed me the advantage of finding treatment for fatigue which has been a real life-saver. I can do my overnight shift work without worry and don't need naps so often anymore, though on occasion, my condition flares up and I find myself seeking places to sleep.<br />
<br />
Hence, I give you this fun (but perhaps not so funny, if you struggle with fatigue) collage of images of public sleepiness with my own particular commentary. Why? I would rather lose my ability to walk than my ability to laugh.<br />
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<a href="https://www.blogger.com/From%20the%20Dose:%2015%20People%20Who%20Just%20Needed%20a%20Nap" target="_blank">From the Dose: 15 People Who Just Needed a Nap</a><br />
<br />
For this to work, just click on the link to see the images, then follow along with my comments below.<br />
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1. I have slept in grocery stores. Not quite like this. I usually find the private area in the back by the pharmacy and pull up a chair, pull my hood over my head. I remember it took so much energy for me to walk from the car to the store that I immediately napped before I even started shopping.<br /><br />I have also slept in those overstuffed chairs at the mall. And whoever decided these were a good idea deserves eternity in nirvana.<br />
<br />
A word about those handicapped parking places. They aren't reserved only for the elderly. Many MSers are quite young and do not show outward signs of their disease (I am middle aged, but still, you wouldn't know it to look at me). I know many young people who use these parking spaces legitimately because they have even worse fatigue problems than I do, and they get treated like common criminals almost entirely by elderly people who don't even use these spaces. Stop it already with the reverse ageism. Rant over.<br />
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2. I had a 2-hour drive down the I-5 corridor one afternoon and, halfway down, I pulled over at a casino, parked in the way back and napped until some guy (not security) knocked on my car window and scared the holy shit outta me. Oh, and I have pulled over in traffic on the Kennedy expressway in Chicago during afternoon commuter hour and napped as my car was buffeted by semis speeding past at seventy plus. The need to sleep can be <i>that </i>irresistible.<br />
<br />
3. I have fallen asleep in yoga classes, but only in the corpse position. And snored. I am not ashamed.<br />
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4. I have yet to fall asleep on the job during my overnight shifts, but that is because I take modafinil. However, I used to faceplant, asleep, into my laptop during live Skype teleconferences in which I was actively engaged. In fact, that was why I finally saw a doctor. I realized, "This can't just be the life of a working mom."<br />
<br />
5 and 6. I have not hidden inside a box to sleep. I might have slept in a fruit crate as a baby, not that I think about it. But that was my crib while camping.<br />
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7. I do not recall ever falling asleep in class except on two occasions: I was at a sleep conference (ironically) and the ballroom we were in was overly warm and too dark and all the coffee in the world<br />
was not keeping any of us awake. The second time, I was (also ironically) taking my sleep health educator's credentialing exam (a 450-dollar test) and, as I was going back over my answers upon completion of the test, I kept falling into what are known as "microsleeps." Yes, that's right. I fell asleep during my sleep educator's exam. And yes, that's right. I passed.<br />
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8. Who hasn't slept while using public transportation? Trains, planes, ferries, automobiles. Yes, yes, yes, and yes.<br />
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9 and 10. See #4 anecdotes.<br />
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11. This girl would never fall asleep in any place where food would be readily available and deliverable.<br />
<br />
12. Of course. Who hasn't slept in a park? Don't be suspicious, it was during the day, I was on a blanket and I did not use any floating newspapers as a comforter.<br />
<br />
13. This is why I don't go the library. Either I fall asleep in the carrels or the noise of other people (their damn cell phones, their damn kids or the general urban hooliganism at the city branch) keeps me from getting my work done. Either way, it's never a productive visit except for the act of selecting media.<br />
<br />
14. That is just too adorable. That is all I have to say on that matter.<br />
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15. I'm pretty sure I wouldn't be able to do this. Still, I am impressed.Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-85099824782937377672015-01-01T06:00:00.000-08:002015-01-01T06:00:00.878-08:00RESOLVED FOR 2015<div style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px; margin-bottom: 6px;">
I used to do resolutions which were top 10 lists for personal, career, health, writing life, etc. (see below). I was w<span style="line-height: 19.3199996948242px;">ay too ambitious then, or maybe I really *could* do all those things then that I can't do now... Who knows? All I know is these long lists create too much expectation now. I'm thinking of a new strategy: one new thing to accomplish for each of these categories of my life, then check in on July 1 to see if I can sneak in another goal for the second half of the year. Who's with me?</span></div>
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And because I'm serious, here are my top 1 lists (2 different categories for body, mind or soul). You can create your lis<span class="text_exposed_show" style="display: inline;">ts according to your needs. This just works best for me.</span></div>
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<div class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-CvY2aCdDSZyp6mFWtpbD8X3sjAwnZhIto_2Rl7iytxlef37pJEZeBc99lzOsGO7u1L7092xklJp8S24jnqo0tmzOwRaM1v_G2U0bEEWVfVyUgYAg1FW02oCzzjK4HI3iGszhsjqpfnA/s1600/walkingfeet.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-CvY2aCdDSZyp6mFWtpbD8X3sjAwnZhIto_2Rl7iytxlef37pJEZeBc99lzOsGO7u1L7092xklJp8S24jnqo0tmzOwRaM1v_G2U0bEEWVfVyUgYAg1FW02oCzzjK4HI3iGszhsjqpfnA/s1600/walkingfeet.jpg" height="133" width="200" /></a>1. Health (body) -- Exercise more regularly, even if it's easy. Just make it regular. MS means I shouldn't <span style="line-height: 19.3199996948242px;">overdo it because of the risk of overheating, but while I'm in remission, I need to get my ass moving again. My arthritis, carpal tunnel surgeries and stomach issues have stopped me cold in 2014 and I need to overcome that.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY46kg4yVQ3QrCnk6WYDYrRxejhg2OQh1nFe7QW77pNMqZIR3hLFZ2Xuq7CikYip-plhEJlB-xy_tyXbotf_FH6cENAngTqMGXeirJigdsxjTnqYrwfsT0ZVS_PTKIgaZW4H8gTuRYzLs/s1600/Inflammation-Back-Pain1-300x211.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY46kg4yVQ3QrCnk6WYDYrRxejhg2OQh1nFe7QW77pNMqZIR3hLFZ2Xuq7CikYip-plhEJlB-xy_tyXbotf_FH6cENAngTqMGXeirJigdsxjTnqYrwfsT0ZVS_PTKIgaZW4H8gTuRYzLs/s1600/Inflammation-Back-Pain1-300x211.jpg" /></a>2. And on the Multiple Sclerosis front (body) -- Drink more alkaline water. (Why alkaline? The normal diet of most people is far too acidic. Drinking alkaline water, like San Pellegrino sparkling natural mineral water, may be one way to achieve a more balanced pH. Or maybe not. Why does this matter? An acidic system is also inflammatory, and inflammation is a key problem for systemic diseases like MS. Here's more if you want to read up: <a href="http://www.jleukbio.org/content/69/4/522.full">http://www.jleukbio.org/content/69/4/522.full</a><span style="line-height: 19.3199996948242px;">. </span></div>
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<span style="line-height: 19.3199996948242px;">The more I can do to focus on anti-inflammatory food, supplements, even water, the better I can maybe help myself with the constant challenge of inflammation (which also impacts my arthritis). So I am hoping to keep a water journal and use my phone to remind me, if I have to, to hydrate. If not with San Pellegrino, then with electrolyte water. I always feel so much better when I do! Maybe it is all a panacea but I hardly think I can hurt myself by drinking more water. And hey, if nothing else, this study shows it might help me with my reflux: </span><a href="http://www.ncbi.nlm.nih.gov/pubmed/22844861" style="line-height: 19.3199996948242px;">http://www.ncbi.nlm.nih.gov/pubmed/22844861</a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVxFDwcaRhwMebm8huisGSfA6xGsuhKggCstGIRSXqs5lhHpzYuEA85RCAz5DVVQ1OIu-8IMUjKUnq_G5EVAuSSemJRR-RqTaq8bfba9RZYJ5pFLIxr5keZv1_a3IXOSLMEc2hZjeq04M/s1600/9to5.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVxFDwcaRhwMebm8huisGSfA6xGsuhKggCstGIRSXqs5lhHpzYuEA85RCAz5DVVQ1OIu-8IMUjKUnq_G5EVAuSSemJRR-RqTaq8bfba9RZYJ5pFLIxr5keZv1_a3IXOSLMEc2hZjeq04M/s1600/9to5.jpg" height="148" width="200" /></a></div>
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<span style="line-height: 19.3199996948242px;">3. Career (mind)-- Develop my career down a path that allows me to work days only so I can slough off third shift. As much as I love the lab, I don't love how shift work impacts my health. For healthy people, overnight jobs can take a toll on the circadian system, and that leads to imbalances across the entire body of systems. This switch will involve more networking with my website and some entrepreneurial </span><span style="line-height: 19.3199996948242px;">effort, which begins on Jan 2 when I get a business license. I'll keep working in the lab until I can find a suitable alternative that pays close to the same thing, but I've made it my goal to start the migration back to the 9 to 5 lifestyle. It could mean shifting slightly from sleep technology to health literacy or sleep health education. Fine...my goal was never to be Queen Sleep Tech.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjDk3R8hTQa-cHNmiOYHTr1Wpt_BPoJk0_hTDWcQGOoHObJ56VHPms1AhfFSHnhND2GKyKQv0TeAHBwDho8Cp3yyKhubnafKxiIkUCYYQvaP3KwH8SQ9gVKt48Sgb7yQ-txpsxNUh763M/s1600/Reading_glasses.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjDk3R8hTQa-cHNmiOYHTr1Wpt_BPoJk0_hTDWcQGOoHObJ56VHPms1AhfFSHnhND2GKyKQv0TeAHBwDho8Cp3yyKhubnafKxiIkUCYYQvaP3KwH8SQ9gVKt48Sgb7yQ-txpsxNUh763M/s1600/Reading_glasses.jpg" height="150" width="200" /></a>4. Intellect (mind) -- Go back to reading for pleasure daily. Started doing this in November and I'm on a roll. I read a lot for work but never for fun. I have struggled to read for pleasure because of blurred vision from fatigue and failure to actually be able to comprehend words during a flare (which is why I left my editing life). I still read very slowly but that matters less than the escape I can achieve riding the waves of someone else's words.</div>
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<span style="line-height: 19.3199996948242px;">5. Personal (soul) -- Practice more meditation and pranayama for health, relaxation and wisdom overall. What used to be criticized for being New Age snake oil now has some scientific evidence behind its efficacy for those with neurological disorders. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_uXF_Y2Ef35xuXEICdi0d3dFzEUnfKH-ESi6lVhlq_tsVwlZtq4ODkAe2LIh1_-9LtYOA8GmwNX346u0wL8qU-fV-TThpFB5p9HBL-ztPJbXw_gK-tiQyA5VLok5JeD1muzu3E-L9MNk/s1600/brainmeditation.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_uXF_Y2Ef35xuXEICdi0d3dFzEUnfKH-ESi6lVhlq_tsVwlZtq4ODkAe2LIh1_-9LtYOA8GmwNX346u0wL8qU-fV-TThpFB5p9HBL-ztPJbXw_gK-tiQyA5VLok5JeD1muzu3E-L9MNk/s1600/brainmeditation.png" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1gNZmJikathtWlf5t_DUES3GuGNZEHAOKjyhvHAoeUvoQk1qnobkb7F22vsAXtNBphZYDVlKv1v77jn__wZUdJE0qe0sQFivar2I-uQxOGQMw2yHFWmGTuwdUoPMfaMesDSyHbn-xn58/s1600/journal-prompts-12.jpg" imageanchor="1" style="clear: left; display: inline !important; float: left; line-height: 19.3199996948242px; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1gNZmJikathtWlf5t_DUES3GuGNZEHAOKjyhvHAoeUvoQk1qnobkb7F22vsAXtNBphZYDVlKv1v77jn__wZUdJE0qe0sQFivar2I-uQxOGQMw2yHFWmGTuwdUoPMfaMesDSyHbn-xn58/s1600/journal-prompts-12.jpg" height="198" width="200" /></a><span style="line-height: 19.3199996948242px;">6. Writing life (soul) -- Copy everything I have ever published and bind it into a single notebook; I find that going back and looking at my previously published work can be motivational for generating new writing. I hope to be motivated to do more nonfiction writing--about MS, about sleep, about mental illness--and having this piece of external "proof" of my validity as a writer is no small thing. Living with </span><span style="line-height: 19.3199996948242px;">being a stay-home mother for most of my kids' lives, working as a writer: these are all ways to become isolated, and in isolation, we can lose sight of our presence out in the larger world. </span></div>
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Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-16061784518764676502014-12-31T08:00:00.000-08:002014-12-31T08:00:10.939-08:00How I am feeling at the end of 2014<div class="separator" style="clear: both; text-align: center;">
<a href="http://i.imgur.com/Jx70lh7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://i.imgur.com/Jx70lh7.jpg" /></a></div>
<br />Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-7099654167575239272014-12-26T16:12:00.001-08:002014-12-26T16:12:26.316-08:00Quarterly Gratitudes from an MSer: December 2015 edition<span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">First of all, I'm grateful you are all reading this since I have not posted at this blog since September 1. One of my goals for 2015 is to get into a regular pattern with the CraterBrain blog again. More on that later. </span></span><br />
<span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;"><br /></span></span>
<span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">Second, I'm happy to wish everyone a fabulous holiday season!</span></span><br />
<span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;"><br /></span></span>
<span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">Third, I'm gonna get right to it because it's redundant to start a list with a list, no? </span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL6t-YI50OLV5Os-WhQtQG3rrQ6o7WdIWNhkGszGtkduwCwbGTox1PFoCPNA620-DwUGeuZ_wHt9X6kIk6TZMKYqQqG0a4N1M0MYnOTP74MKQELLoJhXW-cKoHZvKA1vKKF8Xb_iJ6v6Y/s1600/msnewsviewslogo.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL6t-YI50OLV5Os-WhQtQG3rrQ6o7WdIWNhkGszGtkduwCwbGTox1PFoCPNA620-DwUGeuZ_wHt9X6kIk6TZMKYqQqG0a4N1M0MYnOTP74MKQELLoJhXW-cKoHZvKA1vKKF8Xb_iJ6v6Y/s1600/msnewsviewslogo.png" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>Just one of many<br />great resources</b></td></tr>
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<span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">1. Gratitude always goes to my online MS cohorts who are true champions for the cause. A lot of people with MS barely understand the disease, but there are some bright lights in the mix who know how to interpret the research, know how to differentiate snake oil from real science, know how to share their experiences and help others in a way that is not at all self-serving, but rather a gift to so many others who are still finding their way in the MS wilderness. I'm talking especially about you DK, and SS, and AG. </span></span><br style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;" /><br style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;" /><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">2. I attended an MS "road show" this fall that was inspiring on multiple levels. I learned a bit more about things like lesion load and was able to get to the bottom of some unfounded rumors about the main disease modifying therapy I'm on. I almost didn't go to this event but am so glad I did now. </span></span><br style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;" /><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;"><br /></span></span><span style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;"></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUNy1F1hG_BinQRIx-cCeT9u-A3UHhmkMZj0g9cPJ6RErPMoDxUGaGBNFtJJEdTsrJLMLXcWDHjfGIMiVO9y0_JTeVyvdQLrw4UYM4CZmrq8sAoQx_3PaN4wH-Rrk0qGb8w3EZLZMEP10/s1600/IMG_6155.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUNy1F1hG_BinQRIx-cCeT9u-A3UHhmkMZj0g9cPJ6RErPMoDxUGaGBNFtJJEdTsrJLMLXcWDHjfGIMiVO9y0_JTeVyvdQLrw4UYM4CZmrq8sAoQx_3PaN4wH-Rrk0qGb8w3EZLZMEP10/s1600/IMG_6155.JPG" height="240" width="320" /></a><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">3. We bought ourselves a really nice RV over the fall that we have already used twice and I'm making plans to use it regularly in 2015. The long-distance traveling by plane is really becoming less and less of an option... I really don't tolerate the experience well anymore and dread the possibility of flying in the future. It takes too much energy, it is overstimulating and fatigues me, I always get overheated, and the unpredictability of flight travel just adds to the stress bomb. I need a vacation once I get home because of it. Not so much with the RV; we live in a part of the world when I can go just one hour from home and feel like I am halfway across the continent. The simplicity, the comfort, the fresh air... my kind of vacay!</span></span><br />
<span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><br /></span><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">4. A repeat from my last two gratitude check ins: My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them. I had to drop them briefly, twice, to get carpal tunnel surgery, and it was made obvious by their absence that my body needs them to operate at maximum. </span></span><br style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;" /><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><br style="line-height: 24.6399993896484px;" /></span><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">5. I've had two carpal tunnel surgeries. The first, in September, took longer to heal than I expected but the numbness is gone. I'm recovering from my second (operation was just last week) more quickly this time, and will be glad to get back to things like yoga again, which probably won't happen until January as I won't be able to put weight on my recovering wrist for a few weeks yet. Still, glad to have a great surgeon, and the hospital system I am a part of was pure excellence.</span></span><br style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;" /><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;"><br /></span></span><span style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;"></span><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6399993896484px;">6. I'm grateful for more time for reading than I've had in the past. Deeply involved in an epic novel by Ann Rice right now. Hoping for more of this in 2015. It feels good to be able to read and not struggle with migraines or weird cognitive hiccups that make it difficult to comprehend.</span><br style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;" /><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6399993896484px;"><br /></span><span style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;"></span><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6399993896484px;">7. Grateful for nary a symptom, most days. When I was first diagnosed, I kept a daily journal that filled two or more pages with details of symptoms and side effects. Now, I might have 1 or 2 slight symptoms a week, not even worth cracking the journal for. I live in constant amazement of this reality and do treasure my sense of "normalcy" now, as it so much resembles my "normal" life before diagnosis.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzHzGZuEjyTiyGJjLDWd-d2_hvjgF541niELa04cR8VnJ8BjVubV3kFxdlhM-cd8vb4Qb43CcuAtXCBqAEccjtKVuk3Aoj6BNCeIz0ibtPb8QUuQWHZuM6H5PciYdpRtbGATS1F6p-w7Y/s1600/mshugfactoid.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzHzGZuEjyTiyGJjLDWd-d2_hvjgF541niELa04cR8VnJ8BjVubV3kFxdlhM-cd8vb4Qb43CcuAtXCBqAEccjtKVuk3Aoj6BNCeIz0ibtPb8QUuQWHZuM6H5PciYdpRtbGATS1F6p-w7Y/s1600/mshugfactoid.jpg" /></a></div>
<span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6399993896484px;">8. A key symptom of multiple sclerosis is something called an "MS hug." This is a deep cinching feeling at the torso which makes it difficult to breathe without great pain. I have not experienced this as an adult, that I'm aware of... but when someone described this experience recently, I realized it was something I used to have when I was a kid, age 10 or 11. It's funny how you have certain physical sensations and just think that is "normal." Certainly, nobody raised an eyebrow when I complained about this vice-like grip around my ribcage and the inability to take a deep breath when I was a kid. I remember my mom, or maybe it was my grandmother, telling me I had a touch of "the pleurisy." What I'm grateful for, here, is the fact that somebody online took the time to accurately characterize the sensation so that I could relate to an experience I had which had been previously lost in memory. And also grateful, weirdly, to realize I've probably had MS to some degree for nearly 40 years. This means that my disease progression is on a very slow course, and that, indeed, is very good news.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifYszB_YQquy7kKr1xEeupwS3aKfzbkEBsoNGsp3dqCyz0cZwqGRndOmB1pZ7NNO-1u854PPZnV3blc-3Z9qVAgfoJjl661uGR-6KkzTK1QRfwwrUi8L17i6wg92AuAmtby46wxe5eQlE/s1600/tesla3.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifYszB_YQquy7kKr1xEeupwS3aKfzbkEBsoNGsp3dqCyz0cZwqGRndOmB1pZ7NNO-1u854PPZnV3blc-3Z9qVAgfoJjl661uGR-6KkzTK1QRfwwrUi8L17i6wg92AuAmtby46wxe5eQlE/s1600/tesla3.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>Tesla 3 MRI: Extra roomy!!! </b></td></tr>
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<span style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6399993896484px;"><span style="font-family: inherit;"><br /></span></span><span style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 18px; line-height: 24.6400012969971px;"></span><span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">9. I am still so happy for the kind of care I receive from my doctors. My primary care physician is amazing. I went in for concerns about pulsate tinnitus, which may be symptomatic of intracranial hypertension (which we have not yet ruled out as a separate condition). The sensation was so extreme that the doc sent me in for a Tesla 3 MRI to take a look at my cranial arteries to rule out aneurysm. Gratitude part A: no aneurysm! Gratitude part B: having a Tesla 3 MRI and learning that MRIs were first developed as a technology to help diagnose MS, specifically. </span></span><br />
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<span style="background-color: white; font-family: inherit; font-size: 18px; line-height: 24.6400012969971px;"><span style="line-height: 24.6399993896484px;">10. Finally, I'm glad for the end of 2014. For me, it was mostly a great year, but I know that it has been hell for many of my closer friends. I want 2015 to be a year of mindfulness, creativity and restoration, not only for me, but for them. I would love to be able to pay it forward for all the wonderful people who have helped me along these last couple of years. </span></span><br />
<br />Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-70663932936648552292014-09-01T16:56:00.000-07:002014-09-01T16:56:35.790-07:00Quarterly Gratitudes from an MSer || Top Ten GOOD THINGS in my life right now<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg43RE6_tMjnPTVbbNRIhfq-tZUedcPkd1HvOpKoVtK1T4YotcoLChm08PVBZRuxxSuJmlAvKGL7HdOb1_cfrMZSnuzrVf0iX6zLVvKnEMYsJ2cATf2fUcWl3BYtuDfUiEUjMXoWSmPs38/s1600/burningbush.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg43RE6_tMjnPTVbbNRIhfq-tZUedcPkd1HvOpKoVtK1T4YotcoLChm08PVBZRuxxSuJmlAvKGL7HdOb1_cfrMZSnuzrVf0iX6zLVvKnEMYsJ2cATf2fUcWl3BYtuDfUiEUjMXoWSmPs38/s1600/burningbush.jpg" height="400" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;">Burning Bush, September 1, 2014. </span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDd5f_9vAU2ZWRLNwUP7NgpZEqvsRVxhxr0okQIhsyWML7-WtyERTaD1wgNY85OLGpa8jhtM11U4baynxRTg1vPx1VLy5HvpSXC8T1TZYVBgxOZgrU7J9GXt21yTzN_pht0-KuqPGpAJs/s1600/rustedplumbagobirdhouse.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDd5f_9vAU2ZWRLNwUP7NgpZEqvsRVxhxr0okQIhsyWML7-WtyERTaD1wgNY85OLGpa8jhtM11U4baynxRTg1vPx1VLy5HvpSXC8T1TZYVBgxOZgrU7J9GXt21yTzN_pht0-KuqPGpAJs/s1600/rustedplumbagobirdhouse.jpg" height="200" width="200" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;">Welcome to my front porch!</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip_DluFr3k90KWLpHgky38KLGRHi98coIM-jy9IFA9w0wNkl5u79Q7gKdtUPI0Z3QPfvFUqIcIgM3haLuikpg79ZOYmx6Zi95wJicmCG-Y9EUwsTu45W7wHWle4rhJIZ0HKG1eVbSNYD4/s1600/plumbago2.jpg" imageanchor="1" style="clear: right; display: inline !important; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip_DluFr3k90KWLpHgky38KLGRHi98coIM-jy9IFA9w0wNkl5u79Q7gKdtUPI0Z3QPfvFUqIcIgM3haLuikpg79ZOYmx6Zi95wJicmCG-Y9EUwsTu45W7wHWle4rhJIZ0HKG1eVbSNYD4/s1600/plumbago2.jpg" height="200" width="200" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;">Plumbago blossoms</span></td></tr>
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<span style="font-family: inherit;"><br style="background-color: white; line-height: 24.639999389648438px;" /></span><span style="background-color: white; line-height: 24.639999389648438px;">Wow, where did the summer go? Wait, it's still here. Sunny and beautiful in the Pacific Northwest and more to come. I love September.</span><br />
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<span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;">1. I know, I am a broken record (and I'm antiquated too, since I'm using that phrase)... but I have amazing children. Beautiful, smart, strong, funny. Focusing on them means less time to focus on my MS.</span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;">2. I'm also gifted with some amazing friends. Not only do I feel like they are right there with me when I'm on a trip across the country (thanks to Facebook!), but sometimes I even run into them live and in person in faraway places (Loretta!) and that's a real pleasure. They are my major source of laughter, intellectual stimulation and advocacy.</span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpljDqCGkNCOB89ti7w37r7tkFYDHHSAUbVb6botsBWL7lPtm8l3jn2yROWl7gof9F6sQQ5aO1YeE_ypnbgtjupnyAL4YCSvIbGmBla3Q2dZhDMT2MsMmIf6elaZ81slGUIpu__vHzGT4/s1600/roseofsharon.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpljDqCGkNCOB89ti7w37r7tkFYDHHSAUbVb6botsBWL7lPtm8l3jn2yROWl7gof9F6sQQ5aO1YeE_ypnbgtjupnyAL4YCSvIbGmBla3Q2dZhDMT2MsMmIf6elaZ81slGUIpu__vHzGT4/s1600/roseofsharon.jpg" height="200" width="200" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;">Rose of Sharon</span></td></tr>
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<span style="font-family: inherit;"><br style="background-color: white; line-height: 24.639999389648438px;" /></span><span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;"> 3. I just spent 10 days in New York and I lost weight. </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;"> Not a lot. But enough that I can sigh with relief and </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;"> know I won't have yet another 5-10 pounds to add to </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;"> my list of things to take care of. It wasn't all hearts</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;"> and flowers, though: the heat got to me on two </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;"> separate occasions, </span></span><span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;">and </span></span><span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;">I had a violent tremor </span><br />
<span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;"> that I'm sure was my body's response to </span><span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;">muggy high </span><br />
<span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;"> heat and the stress of travel. But I'm feeling much </span><br />
<span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;"> better </span><span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;">now that I'm home. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzdrRj56YvPQeKT8HFQ9DqJ9eIlULcqWx0hMx86BvWItRxD5g0O8CHjss_ShDYLpVvCEATJG0YGZaueSdYrhA-9_vXLgIrArjL4kubwXP57DnkF9kyO-rMO1zPYxX8mMu0-YzS9qAdgoM/s1600/falsespirea.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzdrRj56YvPQeKT8HFQ9DqJ9eIlULcqWx0hMx86BvWItRxD5g0O8CHjss_ShDYLpVvCEATJG0YGZaueSdYrhA-9_vXLgIrArjL4kubwXP57DnkF9kyO-rMO1zPYxX8mMu0-YzS9qAdgoM/s1600/falsespirea.jpg" height="200" width="200" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;">False spirea</span></td></tr>
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<span style="font-family: inherit;"><br /></span><span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;">4. A repeat from my last gratitude check in: My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them.</span></span><br />
<span style="font-family: inherit;"><br style="background-color: white; line-height: 24.639999389648438px;" /></span><span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;">5. A shift in my schedule. With one kid off to college, it will be a little more quiet around here and a lot less busy (and with way less laundry to wash). I'm excited for my daughter and know these next few weeks without her will be spooky, but I'm grateful for a lighter load of parental duties at the home front. And she's gonna be just fine where she's at. I feel like I can really hunker down and get back to some meditation, yoga, walking, and even some trips to the gym, as well as eating better, drinking more water and just taking time to be with friends.</span></span><br />
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<span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;">6. Loads of DVR recordings to catch up on. It's how I get my chores done. Old stuff, new stuff, movies. And (see #5) there's potentially more time for more books. I'm reading several right now in fits and starts. I'd like to make that more consistent. My fatigue is more or less under control, so it's doable.</span><br />
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<span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;">7. I have a whole new pot of gold to develop into essays, stories, poems etc. thanks to time spent at a writer's conference in July and the purchase of numerous small journals which I have tucked into every nook and cranny so as to capture fleeting genius whenever it strikes. (Once captured, it may not be genius anymore, but that is beside the point!) </span><span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;">I'm thinking about writing about my MS now, more formally, as well as other topics. </span><br />
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<span style="background-color: white; font-family: inherit; line-height: 24.639999389648438px;">8. My neighbors stepped up and helped my husband throw our annual neighborhood bash while I was out of town. Who can claim to have such awesome neighbors?? I've never known this kind of community, having moved so often as a kid. It's pure gold. I know that, were my MS to take a turn for the worst, my neighbors would be the first line to help out my family and I.</span><br />
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<span style="font-family: inherit;"><span style="background-color: white; line-height: 24.639999389648438px;">9. I planted my yard to be awesome in the fall. And it is. The false spireas and the plumbago are just absolutely gorgeous right now, as is the Rose of Sharon. New pansies are bursting from the pots as well and will keep doing so into the late fall. Burning bushes are tipped in red as well. Fall is here! Yay! MS has enhanced my appreciation for the little things: the flowers in the yard, the birdsong outside my bedroom window, the cool breeze through the trees, the brightness of stars outside the airplane window.</span></span><br />
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<span style="background-color: white; line-height: 24.639999389648438px;">10. Recognition for my writing. I recently won a literary prize for an essay I published last spring. It came with some cash-money as well. It's no small thing to be validated in this way, and I can probably squeeze a whole year of encouragement out of that single attagirl. Again, like in #9, it's the small unexpected surprises of life that can keep a person moving forward.</span>Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-36800371811565432982014-08-18T08:42:00.000-07:002014-08-18T08:42:50.817-07:00New MS drug approved!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrMsQ52cz5-V8DgML1AkLeraEbVWDo89iOsLyNrUKgk5IDctEMsavtXp_XoApkfYr1Fdj9YE8YP5hIQoDZGNzDATfjZS4Qq9fFVS9X6jHEhhE9Q9rvJh7Vj6yKewZkS9M2aXw3x6Z1uz4/s1600/plegridy+injection.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrMsQ52cz5-V8DgML1AkLeraEbVWDo89iOsLyNrUKgk5IDctEMsavtXp_XoApkfYr1Fdj9YE8YP5hIQoDZGNzDATfjZS4Qq9fFVS9X6jHEhhE9Q9rvJh7Vj6yKewZkS9M2aXw3x6Z1uz4/s1600/plegridy+injection.jpg" /></a><span style="font-family: inherit;">This one's from the maker (Biogen Idec) of the drug I use (Tecfidera). From the <a href="http://mymsaa.org/news-msaa/1165-plegridy-approved">MSAA</a> article: </span><br />
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<span style="font-family: inherit;"><b>"<span style="font-size: 15px;">On August 15, 2014, Biogen Idec announced that the United States Food and Drug Administration (FDA) had approved Plegridyâ„¢ (peginterferon beta-1a) for the long-term treatment of relapsing forms of multiple sclerosis (MS). Manufactured by Biogen Idec, this new medication is the 11th disease-modifying therapy (DMT) to be approved for MS since the early 1990s. Plegridy is given once every two weeks through a subcutaneous self-injection."</span></b></span><br />
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<span style="font-family: inherit;"><span style="font-size: 15px;">Yet another injectable, but at least it is every two weeks, so much better than daily. People who takes injectables for MS suffer from "injection fatigue" as well as a beesting-like pain and scar tissue at all the various injection sites on their bodies. This new form of the interferon therapy should be a boon for many. It still has the flu-like symptoms as a potential side effect, but that is nothing new with MS patients taking injectable </span></span><span style="font-size: 15px;">disease modifying therapies (</span><span style="font-family: inherit; font-size: 15px;">DMTs). </span><br />
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<span style="font-family: inherit;"><span style="font-size: 15px;">Keep in mind, this is yet another treatment for the relapsing remitting form of MS (RRMS). For those progressive forms of MS (primary progressive or PPMS, secondary progressive or SPMS, and progressive relapsing or PRMS), there are still NO treatments for halting progression. (There is no cure for any form of MS, only DMTs which show a slow-down or halting in disease progression.)</span></span>Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-49807166254095166862014-07-09T17:25:00.002-07:002014-07-09T17:25:50.125-07:00FOUND! My mind<div class="separator" style="clear: both; text-align: center;">
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I know, this is a very short post, coming from me! But I wanted to share some good news... I was able to access the results of my neurocognitive tests from July 3 and am encouraged and relieved to find my results are very good. In effect, I'm not losing my mind! So today... a celebration. More about this fascinating experience in a future post, I promise.Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-32920910160547453832014-06-01T11:16:00.004-07:002014-06-01T11:24:20.148-07:00LOST: A loved one to chronic incurable disease<div class="separator" style="clear: both; text-align: center;">
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<br />
I lost a friend today, someone I've taught with in the science fiction convention world in the past, someone who has a daughter the same age as mine, someone who shared my literary sensibilities, someone I have laughed with countless times and admired for his stubborn desire to live life on his own terms.<br />
<br />
We met 11 years ago last April at a regional event, when he was just starting to break in as a SFF writer. Now his bibliography includes hundreds of short story publications, credits in anthologies and collections and more than a dozen books, including a potent memoir about surviving cancer.<br />
<br />
Today he died of cancer of the liver after 6? 7? years of fighting different onslaughts (stage IV colon cancer among them).<br />
<br />
He kept going, though. He kept working until disability was his only option. He jumped through the ridiculous flaming hoops of our heartless insurance system. He traveled when he could, and wrote until he could no longer pick up a pen or read the words on his laptop.<br />
<br />
He was in pain much of the time, he had moments of all-out depression or hair-raising anxiety. He lost functionality in his body that many of us, even with MS, still enjoy or take for granted.<br />
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He did not live long enough to see his daughter graduate, which makes me terribly sad. She is a beautiful, strong young woman and they were intensely close. She will survive this because she is cut from his cloth, but it is still heartbreaking to accept.<br />
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I was always hopeful for him. He had a relentlessly sunny outtake on life and had made it a practice to turn the bad stuff that happened to him into something he could use to strengthen his resolve. I would see him at a convention and he would look great, then he would disappear between convention seasons as the cancer claimed other parts of his body. Then he would go through the rigors of chemo and radiation, tamping down the cancerous uprisings, and return for yet another season of sci-fi conventions. In between, he continued to write and publish and won some well-deserved accolades. The guy <i>is</i> talented, after all. <br />
<br />
He also tattooed his radiation and chemo exploits on his scalp and his wrists and wrote often about his cancer struggles in a way that made it possible for us all to manage its horrors. So public an approach no doubt made it harder for him in some ways, but the response to his words was broad and resoundingly supportive.<br />
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He became a hero for so many of us. A small video house is still in the process of making a movie about him, and he has already starred in smaller videos that walk viewers through the experiences of his active involvement in the Human Genome Project. (What else would an SFF writer do but use cancer as an opportunity to take a live role in studying the science behind cancer?)<br />
<br />
Well, a lot of others would give up or recede into obscurity, by my friend didn't. He decided instead that he would dance with this new partner, call it names, have fights with it, laugh at its face, have it tested and treated experimentally via the NIH.<br />
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Perhaps his biggest challenge was losing his cleverness to the vagaries of pharmaceutical side effects; even working at 50%, his brain was still quicker than most of ours could ever be. Certainly most did not even notice his cognitive slippage, though he was likely hyperaware of it.<br />
<br />
He and I emailed back and forth about this annoying "cog fog." It was something we both shared periods of together about a year ago. When he described what was happening to his thinking and creative processes, I could relate. I think it helped that I could share my same experiences honestly with him, that I didn't just pooh-pooh his fears of literally losing his mind because I was also experiencing the same sense of derailment.<br />
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When you spend your entire life working in intellectual pursuits like creative writing, the idea of losing your mind is WAY more terrifying than losing your legs. There are no wheelchairs for broken brains. And nobody can see a brain as it atrophies... it's a long, cruel process of gradual decomposition. Meanwhile, others continue to expect you to function at one hundred percent when, in fact, your brain has dipped to less than fifty and all you can think is "THIS IS IT... I will no longer speak again, or be able to understand spoken language directed at me, or find the right words and then be able to transfer them from the jail cell that is my broken brain to the page because all the mechanisms that allow me to type or write by hand are also compromised."<br />
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He didn't believe in Heaven, nor do I, not in the religious sense. He was far more convinced he would become worm meat and that will be all, which he was comfortable with. And why not? He lives on through his published words and tens of thousands of people whose lives he's already touched through his writing, his teaching and his inspiration as a speaker and blogger.<br />
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I still hope he is pleasantly surprised to find his soul bathed in white light in this moment, moving to the next level of his life pain free, fingers flying on his celestial laptop even now.<br />
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I'll be looking for a new star in the sky tonight.Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-78810315953995410472014-05-31T15:57:00.000-07:002014-05-31T15:57:31.095-07:00Gratitudes from an MSer: Top Ten GOOD THINGS in my life right now<div class="separator" style="clear: both; text-align: center;">
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<br />
I have had a rough couple of weeks, but at the same time, I have not been without some wonderful experiences as well. Time to look away from the train wreck that symbolizes what's been going on in my personal life since mid-May and focus on the great gifts crossing my path.<br />
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1. Great children who I don't need to babysit. I know, they are teenagers, but let's face it: most parents of teens are scared shitless every time their kids leave the house. On the other hand, I am perhaps the only parent who slept well last night while my senior was off to the prom in the Big City. You know, I must have raised her right because I did not feel the need to babysit her or make her accountable for her night or shadow her. I know lots of parents who did these things last night: chauffeuring, hanging out at the actual dance, as if by doing so that would mean a better prom for their kids? I don't know... maybe it's because they can't cut those apron ties, or maybe they can't trust their kids to "make good choices," or maybe they are fearful of that business of after parties... who knows? All I know is that I trust my kids and give them a long leash and they have yet to let me down. That's no small thing when you have a condition which generally worsens under the weight of stress.<br />
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2. Despite the aforementioned train wreck, I continue to be pleased with the results of my latest MRIs and the way Tecfidera is helping me out as a DMT. Unfortunately, the train wreck began the afternoon following the good news about my MS (non)progression, but I never had a chance to celebrate. Why turn that into a negative? I am planning a celebration of my first year anniversary of taking Tecfidera in June, because I know I have friends who will celebrate with me. Plan it and they will come.<br />
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3. Obviously, I have endless gratitude for my friends. My husband is hot/cold when it comes to being supportive, and my children have their own challenges; I can't ask them to do the emotional work of adults. My extended family is going through all kinds of turmoil (re: previously alluded to train wreck) so they can't be expected to hunker down with me. But my friends are always there for me. Always.<br />
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4. My job continues to give me a reason to get up in the morning. I just took a credentialing exam and think I might have passed. If so, I can broaden my sphere of influence in ways beyond my work in the lab and even get paid for it. Woohoo!<br />
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5. Great weather! I use sunshine as fuel. Warmth improves my mileage. What's not to be grateful about?<br />
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6. My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them.<br />
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7. I am grateful that my back deck is all cleaned up and functional again. I have an instant retreat space back there and I have already put it to use and love how calming it can be sitting out there, taking in some sun, tending to my herb garden, having a fire in the chiminea or chatting on the phone.<br />
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8. A freezer full of wild-caught salmon. I'm having some of it tonight. On the grill. AWESOME.<br />
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9. DVRs and Roku. There are times when I just need to ESCAPE!<br />
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10. Solo road trips. I've had to make two round trips since mid-May (one to the Tri-Cities, one to B'ham), and I love the silence and solitude of those drives, especially since the weather was beautiful 3/4 of the days/nights. I listened to podcasts, stopped to take pictures, ate yummy food and just let my brain unwind.Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-17201632341615367912014-05-22T00:30:00.000-07:002014-05-22T00:30:02.164-07:00Wordless Wednesday: In honor of "Memory"al Day Weekend<div class="separator" style="clear: both; text-align: center;">
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<br />Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-36364455440027299482014-05-16T14:26:00.000-07:002014-05-16T14:28:06.840-07:00Step right up, get your tickets to some GOOD NEWS...<div class="separator" style="clear: both; text-align: center;">
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<br />
Today, my MRIs (all 1.5 hours of them, complete with an IV full of gadolinium dye) showed the following:<br />
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<li style="margin: 0px 0px 0.25em; padding: 0px;">All previously active lesions are now officially <b style="text-decoration: underline;">inactive</b> <b><span style="color: orange;">(yay)</span></b></li>
<li style="margin: 0px 0px 0.25em; padding: 0px;">All previously "questionable" lesions are <u><b>no longer present </b></u><b><span style="color: orange;">(yay)</span></b></li>
<li style="margin: 0px 0px 0.25em; padding: 0px;">I have <u><b>no new</b></u> active lesions <b><span style="color: orange;">(yay)</span></b></li>
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<span style="font-family: Verdana, Geneva, sans-serif; font-size: medium;"><span style="line-height: 24.64000129699707px;">Blood tests will confirm that my body has adjusted well to the Tecfidera; I will have those results by the weekend. Previous tests when I wasn't feeling as good as I am now showed my liver was metabolizing the medication just fine, so it's a safe assumption that my liver is still functioning well and I will be able to continue to use this new oral med, as it seems to be working for me. The manufacturer has proven to the FDA that it is safe to use 4 years out, so I'm feeling great that I might NEVER have to go the route of injectible medications with side effects. </span></span></div>
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<span style="font-family: Verdana, Geneva, sans-serif; font-size: medium;"><span style="line-height: 24.64000129699707px;">I will get a neuropsychological screening done this summer to establish a cognitive deficit baseline, and I will review my arthritis and carpal tunnel issues in both wrists also this summer to see if I still need surgery. I will also have my left big toe checked for arthritis or gout and move forward accordingly. </span></span></div>
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<span style="font-family: Verdana, Geneva, sans-serif; font-size: medium;"><span style="line-height: 24.64000129699707px;">I also have permission to double my wakefulness medication (modafinil) if I should get hit by a period of super fatigue (like I had last April, which caused me to miss both MS walks I had signed up for, in fact). </span></span></div>
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<span style="font-family: Verdana, Geneva, sans-serif; font-size: medium;"><span style="line-height: 24.64000129699707px;">I'm psyched to hear this news, of course, and it means I can let my energy levels shift away from concerns about disease progression so that I may invest more of my focus/attention on my work in the sleep medicine field. I've discovered that the more I work and the more I involve myself in other intellectual pursuits like writing, which don't shine a glaring light on my MS, the less I am stressed by it and if I'm having symptoms, they are barely noticeable if they are present at all. </span></span></div>
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<span style="font-family: Verdana, Geneva, sans-serif; font-size: medium;"><span style="line-height: 24.64000129699707px;">And that's what I'm going to leave you with, dear reader, as a closing bit: the less you examine your illness, the less it seems to bite back. I know I am lucky in that I have a mild form of MS which is not physically apparent to people around me, and I know that others with major mobility issues will be challenged to NOT always be thinking about their illness, because being out of balance or lacking movement in an arm or the sight in one eye can be terribly present... but in the end, we still can choose where to focus our attention, and if it's toward things that are life-affirming, positive, and helpful in some way to the community, then how can that NOT be a better approach? </span></span></div>
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<span style="font-family: Verdana, Geneva, sans-serif; font-size: medium;"><span style="line-height: 24.64000129699707px;">Thanks to everyone in my life--family, friends, doctors, nurses, technicians, pharmacists, insurance payors, MS cohorts--for buoying me up through this challenging year. And thanks, to, to Biogen Idec, which manufactures Tecfidera. I have been hearing all kinds of good news from my peers who started "Tec" before I did; I am so pleased to be part of the good news community now! </span></span></div>
Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-57122154716425054822014-05-15T16:08:00.004-07:002014-05-15T16:08:52.343-07:00One year MRIs TOMORROW... <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijUBM0F-8tsXmjfyoBoH67kZBhd5NiLueUF6My6oKl0Vh_AyXfuQQd2RQn6emD2s1jf4EtkHV5mj8V7QyTTWtpB26anpBQj7mN8vUWgw2duhXiawinclzf6X9PAoF0cq2MUuguMmd6bQU/s1600/lorazepamspongebob.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijUBM0F-8tsXmjfyoBoH67kZBhd5NiLueUF6My6oKl0Vh_AyXfuQQd2RQn6emD2s1jf4EtkHV5mj8V7QyTTWtpB26anpBQj7mN8vUWgw2duhXiawinclzf6X9PAoF0cq2MUuguMmd6bQU/s1600/lorazepamspongebob.jpg" height="300" width="400" /></a></div>
<br />
<br />
About an hour and a half in the White Tube of Death (WTD) means I'll be taking a lil' somethin' something'...<br /><br />
We will be looking for the following in my films:<br />
<ul>
<li>Lesions that used to be active but are now smaller and/or inactive (yay)</li>
<li>Previous "questionable" lesions which are now smaller and/or inactive (yay)</li>
<li>New active lesions (boo)</li>
<li>Old lesions that are STILL active and the same size or possibly larger (boo)</li>
<li>Previous "questionable" lesions which are larger and/or active (boo)</li>
</ul>
<br />
This will require contrast dye which explains the long time spent in the WTD and which feels, as my friend ES accurately described to me last night, as if you are a carry-on suitcase jammed into the luggage compartment of an airplane. <br />
<br />
If I get more yays than boos, then I'll chalk it up to my disease modifying therapy (Tecfidera) working for me (hey, I've adjusted to it--the least it can do is work for me, right?) and overall good management of my disease course through healthy lifestyle (stress management, good sleep habits, nutrition supplements, primarily). <br /><br />If I get more boos than yays, we might have to go back to the drawing board on the DMD to see what else might work. <br /><br />But I feel pretty good these days and expect the former, not the latter, to occur. I reallyreallyreally hope I don't have to change pharmaceutical course because that will probably mean going from oral meds to injectables and that's not really in my plans...<br />
<br />
Wish me luck!Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-7730561862796194072014-05-13T10:08:00.001-07:002014-05-13T10:08:06.962-07:00CHAOS MONTH: a 4-week contest to see who is stronger... Me or the MS<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxibcclp1AH4wIYkb-zNa6UCql1tsbPZKVCxI0QFqUYtrfbtX9u5ooFqx1i1-QBAzp8DDQkkR8AAl-pgnfJ4Sm5-NquG23aCGeWL8FfzKyVqqlYoIuLzYKMvNc44_nbADYrRICP0OheCc/s1600/chaos+head.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxibcclp1AH4wIYkb-zNa6UCql1tsbPZKVCxI0QFqUYtrfbtX9u5ooFqx1i1-QBAzp8DDQkkR8AAl-pgnfJ4Sm5-NquG23aCGeWL8FfzKyVqqlYoIuLzYKMvNc44_nbADYrRICP0OheCc/s1600/chaos+head.jpg" /></a></div>
<br />
Let me give you a bulleted snapshot of the next four weeks in our household. The articles marked with a triple asterisk*** indicate areas where help would be nice to receive, but the odds are only 50-50 that we will get any, even if we ask for it. Red text indicates high stress events; green text indicates... oh heck, who am I kidding... it's all red text!<br />
<br />
I will:<br />
<br />
<ul>
<li>get my annual MRI (spinal and brain, so about 1.5 hours in the White Tube of Death) to see if my MS meds are working or whether my MS has progressed despite all these meds. Your guess is as good as mine.<br /></li>
<li>participate in a grueling day-long neurocognitive test to establish a diagnostic baseline so, in the future, if I lose my mind, at least I can prove it clinically (not really kidding, this is all about qualifying for disability down the pike)<br /></li>
<li>find out if I need to get wrist surgery for my arthritis/carpal tunnel issues<br /></li>
<li>provide some of the only reliable transportation that my daughter's water polo team ever gets to their far and away games (50-75 miles one way) over multiple days*** (at least I enjoy doing this when I don't have a migraine... but what in tarnation will they do next year without me? Seriously? and I'm not even a captain's mom!)<br /></li>
<li>study for and take my sleep health educator credentialing exam*** (I am getting some help but it's really that I don't have any quiet time to even study)<br /></li>
<li>prepare to learn an entire new electronic medical records system - which has the added reputation of being WONKY - but must pass proficiency to keep my job<br /></li>
<li>continue to work as many hours as I can (schedule has been highly unpredictable since February); listen, not knowing for sure when you are working (until 4pm that day) is stressful, peeps<br /></li>
<li>start pulling together all the communications for the sleep society fall conference, including blogging and website relaunch and maintenance (oh sure, Murphy's Law doesn't apply at all here, right?)<br /></li>
<li>plan a graduation party as well as get announcements and invites out and create a Brag Board and slide show for my daughter<br /></li>
<li>finish two essays related to sleep medicine<br /></li>
<li>try to keep up with several blogs<br /></li>
<li>complete my sleep health clearinghouse website, which is woefully behind in production</li>
</ul>
<br />
My husband will:<br />
<br />
<ul>
<li>perform in several private band gigs as well as our hometown parade<br /></li>
<li>travel to Dallas for the annual business conference<br /></li>
<li>power wash, restain/repaint the deck and complete other major home maintenance repairs<br /></li>
<li>set up for the graduation party<br /></li>
<li>continue to address mother's transportation and medical issues*** (we just had her SNF up her services so she will stop calling us for things they can do easily without her needs completely blindsiding us on a daily basis)</li>
</ul>
<br />
My oldest daughter will:<br />
<br />
<ul>
<li>complete her last season of high school water polo, which includes wild card and state tournament games covering 6 full days<br /></li>
<li>attend the dreaded senior salute/end of season banquet. This should be a positive experience, right? Don't get me started on the debacle that overlooked her as team captain just a year ago, and the heartbreak and ego-swallowing and self-restraint all of us here at home have had to endure over the last 12 months as a result.... Once bitten, twice shy, as they say. I'm afraid that all the work she's done for this team will just result in her getting ignored and unacknowledged like she's been ALL FRICKIN' SEASON by at least one coach. This includes her serving as an excellent leader despite not being picked as captain; being perhaps the finest <u>team</u> player they have (and not the hot shot who is in it for the personal glory); sharing what she learns in separate clinics with her teammates--and it shows, in the games; and recruiting nearly 90% of the current team, quite a legacy. I'm just asking the Universe... just this one night, can she be gifted an opportunity to shine that's all hers to enjoy and deserve? Can it be a chance for her to cry tears of joy, for a change? Everyday has become a bittersweet teachable moment this year... it wears on her, on us. No wonder she wants to get as far away from our small town as possible... her experiences beyond the home team have been positive and encouraging and have made her feel like she matters. Here at the home pool? Not so much. And yes, it makes me angry to see someone get overlooked who deserves better.<br /></li>
<li>attend prom (thank goodness she already has a dress!)<br /></li>
<li>interview for a scholarship<br /></li>
<li>attend the senior awards banquet (at least they will celebrate her accolades there)<br /></li>
<li>graduate!<br /></li>
<li>start Junior Olympics water polo training in earnest (4 days a week at a pool 50 miles away)<br /></li>
<li>pick up her lifeguarding job when polo season is over<br /></li>
<li>start physical training to be ready for Div I level water polo in September<br /></li>
<li>practice driving and get her driver's license</li>
</ul>
<br />
My youngest daughter will:<br />
<br />
<ul>
<li>attend the band end-of-year-banquet (which she also organized)<br /></li>
<li>vie for color guard captain title for next year<br /></li>
<li>complete another 4-day drum corps camp<br /></li>
<li>play in the band for graduation<br /></li>
<li>perform the winning show with Winter Guard one more time for the public<br /></li>
<li>prepare for a 2-month, cross-country drum corps tour<br /></li>
<li>attend a field trip to Wild Waves with Winter Guard</li>
</ul>
<br />
Somewhere in there is the whole emotional underlayer of:<br />
<br />
<ul>
<li>dealing with an ailing elderly relative who can't live independently but who won't pay for immediately available services when she can call my husband and ask him to do EVERYTHING*** (by the way, we are not the only relatives that could be caring for her, there are others who just blow off their obligations so they can take their usual 2-3 vacations a year. <i>Yes, I'm bitter.</i>)<br /></li>
<li>dealing with the emotions fraught in witnessing my oldest daughter's graduation*** (I can barely even think about this for all the other stuff going on. <i>Yes, I feel robbed.</i>)<br /></li>
<li>dealing with the fact that my youngest daughter is going to be gone ALL summer*** (I'm not ready for the empty nest yet and she and I are close as two peas in a pod; what will I do without her?)<br /></li>
<li>dealing with the unknowns of having MS*** (I live with this daily, but that doesn't mean it ever gets easier)</li>
</ul>
<br />
As well as the usual and sundry activities of daily living:<br />
<br />
<ul>
<li>yardwork*** (getting some help now and the worst should be over soon)<br /></li>
<li>laundry (it will lighten just by having one kid away from home)<br /></li>
<li>housekeeping*** (gonna start paying for this again)<br /></li>
<li>paperwork<br /></li>
<li>eating right<br /></li>
<li>exercising*** (literally NO TIME)<br /></li>
<li>sleeping<br /></li>
<li>medicine maintenance</li>
</ul>
<br />
After which I will probably collapse. If I don't before then...<br />
<br />
I include all four of us in this overview because, if you are a parent, you know that all that happens to your children eventually happens through you, including the emotional ups and downs, the physical logistics and the problem solving that comes along with it all. Nothing happens in a vacuum, but more importantly, all of our kids' "gigs" are our "gigs" as well, and despite all the things slated to happen over the next four weeks, we will be there for every last event.<br />
<br />
Sigh. Still, it's exhausting to even imagine. We have no vacation planned afterward. I am attending a writing conference for 11 days in July which will be like a working vacation, and my hubs will follow suit the next week at a jazz workshop. I will take my oldest to NYC for 3 days as a graduation gift before setting her up in the dorms in upstate NY in late August. If we are lucky, my husband and I might be able to take a night off here or there to go camping. In the absence of that, I hope to resurrect the chiminea and spend as many summer nights as possible staring into campfire.<br />
<br />
Please cross your fingers for me that I don't have an MS relapse during the next four weeks. Because there aren't any plan Bs for this kind of stuff.<br />
<br />Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-82127666228701154552014-05-02T00:30:00.000-07:002014-05-02T00:30:02.124-07:00[Media Resources] Greater Delaware Valley MS podcasts<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5JgoTtkC2pvu9gDdwqRcnSvHaT5GKnQbgjwChK5PMRCtcOv6p03BZjqWtHOdEjHR7vNckOQaxRQ6f_lrPN9W-5sSM1MOjXWFifF2Qf06i3vhLOLwoj0TZAOkAnI9vLo1wBG_9dC8ePHw/s1600/msgdwc.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5JgoTtkC2pvu9gDdwqRcnSvHaT5GKnQbgjwChK5PMRCtcOv6p03BZjqWtHOdEjHR7vNckOQaxRQ6f_lrPN9W-5sSM1MOjXWFifF2Qf06i3vhLOLwoj0TZAOkAnI9vLo1wBG_9dC8ePHw/s1600/msgdwc.jpg" height="320" width="287" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><b><a href="http://main.nationalmssociety.org/site/Calendar/2103407899;jsessionid=744F1CCEAAB346F98AD13C96659E911A.app352a?view=Detail&id=329676">"Why Everyone Needs a Power of Attorney"</a> <br />is the most recent program to be <br />broadcast and archived by the <br />Greater Delaware Valley Chapter <br />of the National Multiple Sclerosis Society.</b></span></td></tr>
</tbody></table>
I love to listen to podcasts, especially when they relate to some of my favorite themes or topics, like cooking or creative writing. The podcast/talk radio community was actually the first arena of media I pursued when I was given my MS diagnosis, and it has not been a disappointing journey.<br />
<br />
One of the best podcast series I have found for learning more about MS comes from the <a href="http://www.nationalmssociety.org/Chapters/PAE">Greater Delaware Valley chapter of the National Multiple Sclerosis Society. </a><br />
<br />These are regular teleconferences recorded live, then archived to be enjoyed by anyone after the event is over. They usually feature one or more specialists in MS or other related fields and they cover, in depth, a particular category, such as "Clinical Trials and Progressive MS" or "Social Security Disability Application Secrets" or "Maintaining Cognitive and Emotional Health While Unemployed."<br />
<br />
While their programs serve populations in Pennsylvania and New Jersey, their podcasts can be accessed by anyone, anytime, and for the most part, the content is up to date and relevant.<br />
<br />
I have found some really good discussion here that's accessible to anybody who has MS or who wants to learn more about it, and the programs themselves are geared toward a general audience, so there isn't a lot of medical-ese to be confused by. Generally I have found the speakers they use are lively and interesting and personally motivated to do the work they do, so that's a plus.<br />
<br />
You can download these episodes for free through iTunes or other podcast hosting services. They usually include a section at the end which is for the live participants to grade the quality of the presentation, so since I am always listening NOT live, three thousand miles away, I know to skip this portion of the end of the presentation.<br />
<br />Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-46223604741161161472014-04-19T12:31:00.000-07:002014-04-19T12:31:01.547-07:00Raising ourselves to be warriors: The Water Polo Match<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbKvwZakuW3gTgBym0KzSDxptiOskNAYQKcw7dK-2726kHXLmowznvguiSU3Z6SavxEpv5A9tIVxtxK0q5xXphOu7yWSddwhyEXj0UDtN09S4p-3v9DdHGGWIetW7znoWOx4-WaPzJ5Hw/s1600/brainhasafit.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbKvwZakuW3gTgBym0KzSDxptiOskNAYQKcw7dK-2726kHXLmowznvguiSU3Z6SavxEpv5A9tIVxtxK0q5xXphOu7yWSddwhyEXj0UDtN09S4p-3v9DdHGGWIetW7znoWOx4-WaPzJ5Hw/s1600/brainhasafit.jpg" height="320" width="319" /></a></div>
<br />
My brain lit up like a roman candle last night at my daughter's water polo game.<br />
<br />
Their team got creamed--they expected to get creamed because they are a young, tiny team of about a dozen players from a 2A school that opts up to play at level 3A; the other team, XXX, is the state champ, has about 50 seasoned players and is most definitely a 3A school.<br />
<br />
The girls fought hard and their opponents played a really awesome game. This was all to be expected from both sides of the pool. My daughter has played with some of those girls in club tournaments and really likes them. In fact, they are practicing for the Junior Olympics team right now as I write this. <br /><br />All in all, our team took the beating pretty well, and we had much to discuss on the long drive back home (the opponent's pool is about 1.5 hours away from where we live). There were some bad calls and some unnecessary roughness but, ultimately, our girls accepted the simple reality that they were outmatched. There were churros from Jack in the Box later and lots of music played on the hands free (while I opted for my noise cancelling headphones and back-to-back episodes of Alton Brown's podcast). Eventually they all crashed and had to be woken up at 10:45pm when we finally got home. Ah, sweet youth.<br />
<br />
I needed the calm humor of Alton Brown NOT because I was driving noisy teens home from a polo game, but because the winning team's parents were HORRIBLE, and I needed some recovery time and space.<br />
<br />
There were about 50 of their fans to our 5 fans. We were SURROUNDED. They mocked our girls relentlessly, in full voice. They repeated some of our girls' field talk, a common form of communication between players, but in condescending voices. They repeated loudly, "Well, this is a ridiculous blow out!" or "We are just kicking their asses to the curb!" with gleeful voices edged in arrogance. They laughed when our goalie could not single-handedly fend off fast breaks that our defense was not fast enough to thwart (and they were trying!).<br />
<br />
Yeah, that's right... our 14-year-old goalie, who just learned how to swim and started playing polo officially one month ago, and who is now going to play on a Junior Olympic team this summer, which culminates in a tournament at Stanford this August. Yeah, go ahead, bash the newbie who shows MAJOR promise, why don'tcha?<br /><br />It was like these people were drunk. (I finally had to look behind me to check. What did I find? <strike>Obese, ugly, poorly dressed, toothless White Trash.</strike> Parents. Parents behaving badly.)<br />
<br />
At one point, I gave one of them the stink eye. She just stared back at me innocently, shrugging "What?" with an evil little glimmer in her eye. Bi-otch.<br />
<br />
I texted my husband: "The XXX team parents are shitbags." He texted back: "F them."<br />
<br />
I was sitting next to one of the parents from our team, a very calm and collected individual. He was visibly aggravated and even embarrassed, but not by our girls, who were fighting the good fight (they were awesome, actually, we were all of us very proud of them, including the coaches), but embarrassed by how poorly the other team's parents were behaving.<br />
<br />
Shitbags, indeed.<br />
<br />
Not surprisingly, the worst offenders turned out to be the parents of the toughest girl on the team, who was penalized and ejected several times for drowning, swimming over players, rolling and other brutality offenses. We learned later from the girls and the coaches how she was playing especially dirty and should have been removed from the game.<br />
<br />
I am the George Costanza of comebacks (meaning I am useless in this capacity!) and could only sit there and hold my head; I even recited the words "serenity NOW!"--made infamous by George's father, Frank--in a funny voice to myself to try to settle down my brain. All those nerve endings just lit up like sparklers, the strange cellophane-crinkly accompaniment in my ears just barely muting their harsh, voices. This is what happens when I become emotionally stressed. It doesn't hurt, but it's weird and impossible to ignore.<br />
<br />
Which, in a way, is a kind of blessing, because it's an immediate message from the universe to "let go." (Hence the Alton Brown podcasts on the long trip home.)<br />
<br />
Anyway, as we got up to leave the game (the final score was 15-0), I saw one parent still in the stands from their team who was not part of the bully pulpit behind us. <strike>He was not obese, ugly, poorly dressed, toothless White Trash, either.</strike> It was obvious he had come straight from work to watch his girl play. He had a soft, nerdy avuncular quality to him that said, "I love my kids and I know you love yours, too." He gave me a sweet, apologetic smile. Right on. There's hope for team XXX after all.<br />
<br />
Still, because I'm not nearly as gracious as I ought to be, I shared my text with the head coach; he gave me a conspiratorial wink. Apparently this is the reputation of team XXX. 'Nuff said.<br />
<br />
It also helped for me to hear from my daughter that her coach had said to the girls at the end of the game, "There is a reason we don't play like that," in relation to the other team's "dirty pool" moves, and the girls left the game understanding inherently that what he was saying was "integrity matters."<br />
<br />
It's always better to keep it classy in water polo, as in life.<br />
<br />
This is what the coach has said repeatedly across the four-year span of my daughter's career on his team, and the fact is: it's one of the reasons my daughter has been accepted by an NCAA Division I water polo team... because athletics are never about playing dirty. They're about playing smart, and teamwork and strategy, about knowing how to play an entire game without getting relief if that's what you must do. It's about jumping back in no matter how hard you lost because who cares about a mostly losing season anyway?<br />
<br />
NCAA water polo coaches acknowledge this can be a violent sport, but they also drive home the message that it must be played with integrity. High school players with a reputation for dirty tricks (scratching, drowning, kicking, unnecessary roughness, swearing, suit grabbing) do find themselves struggling to find a team that wants them at the collegiate level. No decent coach there has the time or energy or inclination to train these bad habits out of future players.<br />
<br />
The only thing that matters is that, wherever we are in life, we strive for our own individual and collective excellence; this is the interior battle we fight every day, not just as athletes, but as human beings.<br />
<br />
In my mind, our girls took home the win for the night for that reason. They <i>get </i>it.<br />
<br />
As for the other team's parents? Not so much. Their loss AND their children's loss.<br />
<br />
The message in this for MSers takes a similar vein: you can give in to the dirty pool of MS, the relapses and trips to the hospital, the emotional hijacking and all the other shitty things that MS could deliver to you, without warning, at any given moment in your life. Or you could fight back by taking care of yourself, having a sense of humor, striving to get out of bed the next day to start again, aiming to be the whole person you are as much as you can make that happen. Sometimes it's a day when the score for us is 15-0 and MS has kicked our ass, but we can still honor our own efforts to beat it. TRYING MATTERS. We can still smile and say, "I'm still here, MS. I will live to see another day and then we shall see what the score is then, hmmm?"<br />
<br />
I found out later that my daughter, upon hearing how poorly the team's parents had behaved, sent a friendly message to one of her friends on team XXX, which said, roughly... "Hey, it was a tough game last night, but we appreciated the competition and we learned a lot from you guys. Thanks! However, you might need to remind the parents in the stands that sportsmanship counts there, as well." The girl responded very kindly and respectfully and said she would pass on that message.<br />
<br />
They are playing polo together on the same team right now, training for JOs. No hard feelings whatsoever.<br />
<br />
My daughter has no idea that she shared this bit of insider info with the very daughter of the shitbags who were sitting behind us in the stands last night.<br />
<br />
Hear that sound? It's no longer the crinkling roar in my head, it's me laughing at this interest curve in the road, proud that not only am I a warrior who takes stock in integrity, but I have raised one as well. <br /><br />Sorry MS, but that's 15-0, in my favor, this time around.Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-33861899668971219132014-04-13T11:03:00.000-07:002014-04-13T11:03:22.028-07:00Nope. Didn't do it.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-hAeZVRdbbvpBhk7I7a2F64DrOH-X6hcAAXTyMfQ8hXy4DHeFPPLPzjwdT2hXHAM2vTiI47_FABJ6L0OBAN2SfpK6ut6bflhPZlcjKNxvPs53d6VgRb3Q29raULoMGbkI6stu6iKOyNw/s1600/exhausted_by_anlymation-d2z55tn.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-hAeZVRdbbvpBhk7I7a2F64DrOH-X6hcAAXTyMfQ8hXy4DHeFPPLPzjwdT2hXHAM2vTiI47_FABJ6L0OBAN2SfpK6ut6bflhPZlcjKNxvPs53d6VgRb3Q29raULoMGbkI6stu6iKOyNw/s1600/exhausted_by_anlymation-d2z55tn.png" height="480" width="640" /></a></div>
<br />
So I was all gung-ho to participate in two separate MS Walks this weekend. And didn't do either one.<br />
<br />
I'm telling you, fatigue is a sum-bitch. <br /><br />I got home from my vacation Monday night. Exhausted. <br /><br />Tuesday I spent trying to catch up on basic post-vacay stuff like shopping, laundry, email, etc. Of course, everything now takes me a lot longer than it used to, and I was wiped out by the prior 14-hour travel day. <br /><br />So Wednesday rolls around and I'm at the hospital all day with my mom who had major shoulder replacement surgery (she rocked it!). <br /><br />Then Thursday rolls around and half my day is lost to previous obligations I cannot get out of, though by all rights I should not have been driving a quarter of the water polo team to a venue 2 hours away, especially since I've never been there and I was driving in city traffic. Thank goodness my daughter helped with directions; my brain fog and a migraine pretty much melted my cognition for the day.<br /><br />Friday rolls around, I'm feeling slightly better. I get a few things done, get my hair done, which is a nice break, then I'm tending to my other daughter's preparations for her weekend of dance recitals. I looked around me, saw all the dirty laundry, the piles of clutter, the fridge without food, and my ridiculously messy office, and I just succumbed to the overarching wave of fatigue that's been holding me in its current all week.<br /><br />
Fugettabotit, there won't be no MS Walk for me this weekend.<br />
<br />
Instead, I got up early yesterday, did my grocery shopping before all the rest of the people came, so I could focus on my list, take my time, and not get wiped out by traffic and the general sense of overwhelming I get when I go to the store anymore. Then I ran a couple of errands that were grossly overdue. Then I came home and did laundry and finishing unpacking (did I say I was behind?) and then I took a nap. I overslept from my nap and threw on new clothes, grateful my new hairdo from yesterday was still holding up as well as the day's earlier makeup... I was late for dinner with my MIL and BIL before my daughter's recital! Dag. Went to the recital, which was AWESOME but also EXHAUSTING, especially since my MIL takes so much energy to be around. Very grumpy, demanding, emotionally challenging. I had some problems with speech and doing math in my head when I went to buy flowers for my daughter. I hate that.<br />
<br />
So today I'm up at a regular time, have done some laundry, revised my To Do List and have been tackling little<i> this and thats</i> all morning. Already I need a nap and it's not quite 11am. But had I gone to the MS Walk today, I would have been WIPED OUT before I even got there. At least my migraine is gone and I am feeling like my marbles aren't rolling out of my skull today, but the exhaustion is still leadening: my arms, legs, even the top of my head weigh about 100 pounds each, it seems. But I feel lighter knowing I made the right choice.<br />
<br />
Thanks to my friends and family for donating and/or walking in my stead today. I guess I have to be fine with being the recipient and not the giver, something I don't always do so graciously or willingly. But this weekend was good practice in putting my health first and following my gut, and though I wish I could have seen friends out there on the path this weekend, I'm glad my day is wide open to a little bit of <i>this and that.</i><br />
<i><br /></i>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio4S0d0hKCBoBD6Gv861C0e9-POYG0PCtQYhaJv7cRxlVtd4eq4smI9Y3Hk73dCU-CZlXKoHMNrDNS9fDHWAC1UpGVC8YvPfoeaM5QHEJIi8fI32tS0zZf9pThRGWcntXFrHBScVZXus0/s1600/snowflake+disease.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio4S0d0hKCBoBD6Gv861C0e9-POYG0PCtQYhaJv7cRxlVtd4eq4smI9Y3Hk73dCU-CZlXKoHMNrDNS9fDHWAC1UpGVC8YvPfoeaM5QHEJIi8fI32tS0zZf9pThRGWcntXFrHBScVZXus0/s1600/snowflake+disease.jpg" height="320" width="252" /></a></div>
Maybe related? A very well-meaning, lovely friend of mine revealed to me that she knew someone with MS, and that person worked out every day and did just great! Part of me is like, yeah, good for them. Sincerely. And part of me is like, hmm, I bet they didn't have mobility issues and this chronic fatigue that I have. And part of me is like, yeah, right, working out everyday is NOT the cure for MS, people.<br />
<br />
This is why we need MS awareness across the masses. MS is not a muscular disease, nor is it a metabolic disease. Exercise and eating right make anybody feel better, but they won't cure MS, and for many with MS, what MS Unplugged hostess Deanna Kirkpatrick calls "the snowflake disease" because of its widely varied presentations, the idea of exercise at all is next to impossible. Even eating at all can be problematic for those with swallowing dysfunctions.<br />
<br />
How is this related? Because we need to have more dialog with nonMSers to drive home these points. We need to have practice as MSers in educating people through these mischaracterizations of the disease.<br />
<br />
I didn't really say anything in response because, guess what? I was too frickin' tired.Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-63350320944588672382014-04-07T00:30:00.000-07:002014-04-07T00:30:03.645-07:00Join me for the SEATTLE AND/OR BAINBRIDGE MS WALKS THIS COMING WEEKEND!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-pOzq_PIUg3CJG_05E2DipWB-85ZMDjED7REkgg1Gdyd2_1bdS-Y73hcIaxOSsMo_oVidG1aWziKF-TZdu7VxlWs8GRlJoTU78yiWBenLNgY2a41YY-NtgMIUUG1RYJbwM8thQaMLTco/s1600/walkms2014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-pOzq_PIUg3CJG_05E2DipWB-85ZMDjED7REkgg1Gdyd2_1bdS-Y73hcIaxOSsMo_oVidG1aWziKF-TZdu7VxlWs8GRlJoTU78yiWBenLNgY2a41YY-NtgMIUUG1RYJbwM8thQaMLTco/s1600/walkms2014.jpg" height="640" width="524" /></a></div>
<b>BAINBRIDGE ISLAND MS WALK (TEAM || ROCK WALKERS)</b><br />
<b>Date:</b> Saturday, April 12, 2014<br />
<b>Location:</b> Starts at BHS and going through Winslow, as I recall (map online is not working)<br />
<b>Address:</b> 9330 NE High School Rd, Bainbridge Island, Washington (BHS)<br />
<b>Site Opens:</b> 9:00 a.m. - 1:00 p.m.<br />
<b>Opening Ceremony:</b> 9:45 a.m.<br />
<b>Route:</b> 2.5 miles<br />
<br />
<b>SEATTLE MS WALK (TEAM || BENAROYA RESEARCH INSTITUTE)</b><br />
<b>Date:</b> Sunday, April 13, 2014<br />
<b>Location:</b> University of Washington campus, Burke-Gilman Trail<br />
<b>Address:</b> 3870 Montlake Blvd NE, Seattle, Washington<br />
<b>Opening Ceremony:</b> 9:45 a.m.<br />
<b>Route:</b> 4 miles<br />
<br />
<b><u><i>Links</i></u></b><br />
Here's the link to the local team, the <a href="http://main.nationalmssociety.org/site/TR/Walk/WASWalkEvents?team_id=371585&pg=team&fr_id=22742">Rock Walkers</a>. Go there, read the stuff there, click on Join Our Team or Donate to Walk MS. And here's the <a href="http://main.nationalmssociety.org/site/TR/Walk/WASWalkEvents?team_id=380736&pg=team&fr_id=22696">link to the Seattle Benaroya Institute Team</a>. OR... you could<a href="http://main.nationalmssociety.org/site/TR?px=12910778&fr_id=22742&pg=personal"> go to my local personal page </a>or to <a href="http://main.nationalmssociety.org/site/TR/Walk/WASWalkEvents?px=12910778&pg=personal&fr_id=22696">my Seattle Walk page</a> to read what I have to say about the local MS Walk here and either Donate To Me or Join My Team.<br />
<br />
I hope to nab a few friends to put in some time walking. It's so much fun and the weather is always nice. Donate or not at your discretion. I'm less about fundraising this year and more about teambuilding and building my support network. And heck, the more the merrier! So please consider helping a friend out so she doesn't have to walk alone, with the fire.Unknownnoreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-54389089404693576142014-04-01T00:05:00.000-07:002014-04-01T00:05:00.298-07:00Walk with ME! An invitation for YOU, to join ME, in the battle against MS... it will be fun, I promise!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-pOzq_PIUg3CJG_05E2DipWB-85ZMDjED7REkgg1Gdyd2_1bdS-Y73hcIaxOSsMo_oVidG1aWziKF-TZdu7VxlWs8GRlJoTU78yiWBenLNgY2a41YY-NtgMIUUG1RYJbwM8thQaMLTco/s1600/walkms2014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-pOzq_PIUg3CJG_05E2DipWB-85ZMDjED7REkgg1Gdyd2_1bdS-Y73hcIaxOSsMo_oVidG1aWziKF-TZdu7VxlWs8GRlJoTU78yiWBenLNgY2a41YY-NtgMIUUG1RYJbwM8thQaMLTco/s1600/walkms2014.jpg" height="640" width="524" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<b>BAINBRIDGE ISLAND MS WALK (TEAM || ROCK WALKERS)</b><br />
<b>Date:</b> Saturday, April 12, 2014<br />
<b>Location:</b> Starts at BHS and going through Winslow, as I recall (map online is not working)<br />
<b>Address:</b> 9330 NE High School Rd, Bainbridge Island, Washington (BHS)<br />
<b>Site Opens:</b> 9:00 a.m. - 1:00 p.m.<br />
<b>Opening Ceremony:</b> 9:45 a.m.<br />
<b>Route:</b> 2.5 miles<br />
<br />
<b>SEATTLE MS WALK (TEAM || BENAROYA RESEARCH INSTITUTE)</b><br />
<b>Date:</b> Sunday, April 13, 2014<br />
<b>Location:</b> University of Washington campus, Burke-Gilman Trail<br />
<b>Address:</b> 3870 Montlake Blvd NE, Seattle, Washington<br />
<b>Opening Ceremony:</b> 9:45 a.m.<br />
<b>Route:</b> 4 miles<br />
<br />
<b><u><i>Links</i></u></b><br />
Here's the link to the local team, the <a href="http://main.nationalmssociety.org/site/TR/Walk/WASWalkEvents?team_id=371585&pg=team&fr_id=22742">Rock Walkers</a>. Go there, read the stuff there, click on Join Our Team or Donate to Walk MS. And here's the <a href="http://main.nationalmssociety.org/site/TR/Walk/WASWalkEvents?team_id=380736&pg=team&fr_id=22696">link to the Seattle Benaroya Institute Team</a>. OR... you could<a href="http://main.nationalmssociety.org/site/TR?px=12910778&fr_id=22742&pg=personal"> go to my local personal page </a>or to <a href="http://main.nationalmssociety.org/site/TR/Walk/WASWalkEvents?px=12910778&pg=personal&fr_id=22696">my Seattle Walk page</a> to read what I have to say about the local MS Walk here and either Donate To Me or Join My Team.<br />
<br />
I hope to nab a few friends to put in some time walking. It's so much fun and the weather is always nice. Donate or not at your discretion. I'm less about fundraising this year and more about teambuilding and building my support network. And heck, the more the merrier! So please consider helping a friend out so she doesn't have to walk alone, with the fire.Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-6728670288040802842014-03-31T00:30:00.000-07:002014-03-31T00:30:05.085-07:00National Multiple Sclerosis Awareness Month || American Cities Show Their LoveThese images do my heart a lot of good.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigzazjkl3BPw_7y1VvVpm4nJTqa95Z4KZo_jsH3w9LKma0CRusv4lJd8JayQRnnnCsmw6B2p652M9mVqMCegGyc0w90edrfm7Nra9dXgdXXOq-JV2qYFKqDFvRiE6svTRftFcDzc9Robw/s1600/bostonms.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigzazjkl3BPw_7y1VvVpm4nJTqa95Z4KZo_jsH3w9LKma0CRusv4lJd8JayQRnnnCsmw6B2p652M9mVqMCegGyc0w90edrfm7Nra9dXgdXXOq-JV2qYFKqDFvRiE6svTRftFcDzc9Robw/s1600/bostonms.JPG" height="396" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Boston MS Awareness</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9VmAj7Ds8qUt9YGCEL-FVPLXUKYjpeQMlhywxUvPngVNFxy6Z_GmcoD89a5A0Rbzn5OgsyIBLF1RPa3S51oC2NXgbQj_aXUHwt1TScKrJ-IqLGPdz5g77Ls4MoK9dCDfEwkq40UrvBY0/s1600/nycms.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9VmAj7Ds8qUt9YGCEL-FVPLXUKYjpeQMlhywxUvPngVNFxy6Z_GmcoD89a5A0Rbzn5OgsyIBLF1RPa3S51oC2NXgbQj_aXUHwt1TScKrJ-IqLGPdz5g77Ls4MoK9dCDfEwkq40UrvBY0/s1600/nycms.jpg" height="351" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Times Square MS Awareness</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr3x1_yC06T6HxIRs19zsj5e_TNx4dXjxl5Q5bXb3c9ZINGbM3SxQePRylbiEZBl-CtRCaH5qfnPXu53Icsv4un0VtjdWAltKAJzCCOmC3S2Lx8e61cSCCEgNAgTOpk1z6sP4MsKs2UV8/s1600/slcms.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr3x1_yC06T6HxIRs19zsj5e_TNx4dXjxl5Q5bXb3c9ZINGbM3SxQePRylbiEZBl-CtRCaH5qfnPXu53Icsv4un0VtjdWAltKAJzCCOmC3S2Lx8e61cSCCEgNAgTOpk1z6sP4MsKs2UV8/s1600/slcms.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Salt Lake City MS Awareness</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9ZtwgEsrQcwR0dGRJ2SZ_c61rwiYdG5KHWnFV1MvcwfFl3X-_a3jnXyNQuoyDID7vTeV4OPgi_B-liUvmhjFEF4uhhILf3PCw_pHmv3bjkfZA-HObkJPHMxfWO6fvG0FJZe3Ea9rCP8A/s1600/spaceneedlems.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9ZtwgEsrQcwR0dGRJ2SZ_c61rwiYdG5KHWnFV1MvcwfFl3X-_a3jnXyNQuoyDID7vTeV4OPgi_B-liUvmhjFEF4uhhILf3PCw_pHmv3bjkfZA-HObkJPHMxfWO6fvG0FJZe3Ea9rCP8A/s1600/spaceneedlems.png" height="235" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Seattle MS Awareness</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0tcSnkpvEJFyMkLObQt8Gmxa-gPdVDQMMhT6csT3spSbbpPwQp7NcbioR6I2nxqbI-pEDLj8PpNjfIupbzhsJ_B7QsAMoJfOBjrLYunCR7jnHlT1f3qMyfV89n494x-ybMWfiVXRKZbw/s1600/vegasms.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0tcSnkpvEJFyMkLObQt8Gmxa-gPdVDQMMhT6csT3spSbbpPwQp7NcbioR6I2nxqbI-pEDLj8PpNjfIupbzhsJ_B7QsAMoJfOBjrLYunCR7jnHlT1f3qMyfV89n494x-ybMWfiVXRKZbw/s1600/vegasms.jpg" height="265" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Vegas MS Awareness</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEvEMnH02ubdyyOft36U9Tlo61vkLTgTGPMv1uhPtJcOjCIjv04oKmQFgDDbeM6Vj_qB3eqqszAPMuRUVIt2n4nxF8veG0JikCXSY36Reb7WF9mibLa68xeFdiOWeKsywl5UEXlJDJq_k/s1600/wrigleyms.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEvEMnH02ubdyyOft36U9Tlo61vkLTgTGPMv1uhPtJcOjCIjv04oKmQFgDDbeM6Vj_qB3eqqszAPMuRUVIt2n4nxF8veG0JikCXSY36Reb7WF9mibLa68xeFdiOWeKsywl5UEXlJDJq_k/s1600/wrigleyms.jpg" height="210" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chicago MS Awareness</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitk8mUQoNwOySDlEVief6p7ssIo7uFToVHgz0TnPXRE9g-2gH-pT34TZdBntalEVJAhS8pmW7IsZnPOoZmHflxH3QiMnEKKg3XqdNXxGSoO30doO0MUOD6kV4h12qw1q6rC6AoTV68M2c/s1600/niagarams.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitk8mUQoNwOySDlEVief6p7ssIo7uFToVHgz0TnPXRE9g-2gH-pT34TZdBntalEVJAhS8pmW7IsZnPOoZmHflxH3QiMnEKKg3XqdNXxGSoO30doO0MUOD6kV4h12qw1q6rC6AoTV68M2c/s1600/niagarams.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Niagara Falls MS Awareness</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgfo0e7o0KadLgMBk5LrXkg19Ips9R02-Vgru3FADO3HG8HFs-IYAilwHsGh4gckUzaw-kX3iBIr1aFnjFfGTdVzb6C1oVzjW1eUHw5mIpUlrG80zNHfW4ibB_2tiW5MWWk6ZyS57RFPY/s1600/minneapolisms.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgfo0e7o0KadLgMBk5LrXkg19Ips9R02-Vgru3FADO3HG8HFs-IYAilwHsGh4gckUzaw-kX3iBIr1aFnjFfGTdVzb6C1oVzjW1eUHw5mIpUlrG80zNHfW4ibB_2tiW5MWWk6ZyS57RFPY/s1600/minneapolisms.jpg" height="166" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Minneapolis MS Awareness</td></tr>
</tbody></table>
<br />Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-24537273418559528152014-03-30T00:30:00.000-07:002014-03-30T09:20:02.179-07:00National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 3: Worry, uncertainty, permission to be grumpy and choosing the life you want<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2pccZjZpsPgfahZe-xjF69Dp0FKrHCU1wv1rLfteJ3V_ui0vTzFTgi2VGUT6fQOMIKIsYyxuarJWkj3Ps5gF55JnB6DNg6kYpbXbn1JDO3phjKXakiP1vo8XVgkYLd42qvM9c6EqV8rc/s1600/tootsiepopowl.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2pccZjZpsPgfahZe-xjF69Dp0FKrHCU1wv1rLfteJ3V_ui0vTzFTgi2VGUT6fQOMIKIsYyxuarJWkj3Ps5gF55JnB6DNg6kYpbXbn1JDO3phjKXakiP1vo8XVgkYLd42qvM9c6EqV8rc/s1600/tootsiepopowl.png" height="489" width="640" /></a></div>
<b><br /></b>Here are more tips for overcoming the challenges of an MS diagnosis using a positive attitude.<br />
<br />
(see <a href="http://mycraterbrain.blogspot.com/2014/03/national-multiple-sclerosis-awareness_28.html">Part One: Steel yourself, look away from the belly button and cut some cords</a>)<br />
(see Part Two: <a href="http://mycraterbrain.blogspot.com/2014/03/national-multiple-sclerosis-awareness_29.html">Gratitude, going outside, the Paradoxical Commandments and the New You</a>)<br />
<br />
<b><br /></b>
<b>7. Stop worrying</b><br />
One of the most common behaviors that follows on the heels of an MS diagnosis is the seemingly incessant need to worry! Stop it! Others smarter than me have already addressed this bugaboo:<br />
<br />
<br />
<ul>
<li><i>Worry is a cycle of inefficient thoughts whirling around a center of fear</i>.--Corrie Ten Boom</li>
<li><i>Worry never robs tomorrow of its sorrow, it only saps today of its joy</i>.--Leo Buscaglia</li>
<li><i>Our fatigue is often caused not by work, but by worry, frustration and resentment</i>.--Dale Carnegie</li>
<li><i>It makes no sense to worry about things you have no control over because there's nothing you can do about them, and why worry about things you do control? The activity of worrying keeps you immobilized</i>.--Wayne Dyer</li>
<li><i>If you know how to worry, you know how to meditate. It means to think of something over and over</i>.-Joyce Meyer</li>
</ul>
<br />
Anxiety and worry are two things that really need to be addressed if you are going to move forward with optimism. They both take up way too much energy to ignore and may require that you seek out counseling to conquer them. Please do so, if necessary.<br />
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<b>8. Learn to expect and to live with uncertainty.</b><br />
People who grew up in truly dysfunctional households probably already have this skill in hand. I know someone who grew up with a loved one who was/is very likely bipolar, but their loved one refused to acknowledge it (which means their mood disorder remains, to this day, untreated).<br />
<br />
My friend's childhood was a series of days in which he walked on eggshells in his own home. Talk about uncertainty. If he didn't walk on eggshells, he could easily attract the wrath of his mood disordered loved one. This is how he moved through childhood... tentative, leery, expecting the worst while hoping for the best. Don't feel sorry for him; from this, he learned survival skills by way of necessity. Now that he has MS, he knows better than to demand that life be predictable, but because of the unfortunate circumstances of his childhood, he also knows how to keep moving forward anyway. <br />
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However, this isn't the case for a lot of people, I'm discovering as I move through different forums and hear people's different stories about how they are dealing, or not dealing, with an MS diagnosis.<br />
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Others can be way more challenged to deal with the loss of control that uncertainty possesses. You can't control anything in life (with or without MS)... not really. You can work hard and still lose your job. You can walk across a quiet street and get hit by a bus. You can try to have children over and over again without success. You can practice an art or craft and never master it. You can tell someone you love them a million times and still lose them because they don't believe you. You can make all the best laid plans o' mice and men and still find yourself in the center of a tornado where everything you cobbled together in your life is lost.<br />
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How you deal with this uncertainty depends upon how you relate to the way you manage time, energy and resources. The more flexible you are with your time, energy and/or resources, the easier it will be to manage uncertainty. But if you live by a rigid and inflexible schedule, if you still continue to "push through" periods of fatigue because you still believe you can (P.S., the secret is out! With MS, you <i>can't</i>), or if you are stingy when it comes to using your resources to guide changes in your life (being willing to spend more money for convenience products or pay for help, for instance), then you will be challenged to manage the uncertainty that comes with MS.<br />
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A suggestion here... make some plan Bs for specific situations in your life where you know that uncertainty can derail you. In example, make contingencies for days when you're hit by a wave of fatigue or a major migraine or temporary blindness in one eye. It may happen on that day when you had major plans (going to work, taking care of a lot of complicated errands, volunteering for your kids school, attending a critical board meeting). A plan B is your way to be part of those major plans even if you are waylaid by MS symptoms.<br />
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You could, for instance, work with your boss to make up for lost time at work or issue a protocol for rescheduling or reassigning tasks as a plan B.<br />
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You could ask for help with your errands from a handful of friends who have offered their support in the past; make a plan B phone tree, even, for such situations.<br />
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You could have a backup volunteer in place for those times when you can't do the school bake sale after all.<br />
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You could attend the board meeting via cell phone or iPad or get someone to record it or read your presentation in your stead.<br />
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Some of the most successful people I know in life are those who regularly anticipate the need for a plan B and use it when something happens. Not just MSers, mind you, but people in general who see the value of moving forward and not letting obstacles get in the way. You don't always have to jump over the hurdle, see? You can always walk around it, hire someone to do it for you, or push the darn thing over and walk ahead. There's more than one right way to do something.<br />
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This is not to say that a plan B will always fix a problem. Sometimes MS hits and there's nothing you can do. Then your plan B really needs to be one of surrender and acceptance; tomorrow will be another day to try again.<br />
<br />
<b>9. You don't have to smile all the time!</b><br />
It's okay to admit that you feel like shit. It's okay to say, crap, I need help today. It's okay to recognize that your energy is nearly depleted even if you just got out of bed and, acknowledging this, go back to bed. You don't have to be Miss Happy Face all the time. That's perpetuating a lie. People who only see you has Miss Happy Face will not have an accurate portrayal of MS, which is a disservice to all who do suffer terribly at the hands of this disease. You have permission to feel grumpy. You have permission to cry. You have permission to be snarky and to call the disease nasty names. You even have permission to be annoyed by well meaning people who seem to argue with your diagnosis when they say "But you look fine!" when you are feeling Not-So-Fine-At-All. <br />
<br />
You didn't ask for this. Still, it's up to you to decide how much grace you want to apply toward managing it. Some people are saintly about it, but most of us are more provincial... we get pissy or depressed or disappointed. And it takes its toll, for sure. People who put on the perfect happy face and never complain are repressing legitimate emotions and denying themselves an opportunity to deal with the dark side of their chronic condition. It's normal to feel negative emotions, even healthy. Don't shortchange yourself an opportunity to more precisely hone your coping strategies... by getting these feelings out in the open, acknowledging them and dealing with them, you are going to be a much stronger person. If you don't, you can only expect resentment, anger, frustration and outrage to consume you over time.<br />
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But you don't have permission to hurt others. Responding to their insensitive comments with information and education is a far better approach. And you don't have permission to lash out or to make comparisons with other people's pain or health issues. Comparing apples and oranges is never helpful for anybody. And you definitely don't have permission to use your condition as an excuse to make everyone else around you miserable. Nobody ever has the right to do that, no matter what's wrong with them.<br />
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Just be honest and keep it classy. If you are having a crap day, and somebody asks how you are, and you know they can tell you are having a crap day, just say it: "I'm having a crap day." Shrug. Move on. Do or don't do as determined by your body and your energy level. Don't make it everybody else's problem, just find help when you can, defer what you can, and tend to your situation until it turns...<br />
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Because with MS, it usually does turn itself around... three days of blindness in one eye forces you into bed and then, boom, you can see again, your headaches are gone and you feel great! We often focus only on our relapses but how often do we celebrate the end of relapses and the beginnings of remissions? If you have energy and you feel good, use it while you can! And if you have nothing to work with, well, then it's time to lie fallow until the pendulum swings back in your direction. For the vast majority of MSers, symptoms come and go and our biggest job is to just manage them. That means making the most of the best days and riding out the worst ones.<br />
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And finally...<br />
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<b>10. Choose.</b><br />
Repeat after me. <i>I have MS, it doesn't have me.</i><br />
<i><br /></i>
People all around you are dealing with chronic illness, not just you. They are diabetic, they have asthma or terrible allergies or arthritis or fibromyalgia or mood disorders or a host of other health problems that can create barriers to living a full life. Find those people, ask them how they push through it all. The fact is that multiple sclerosis is two words, not a sentence! And you still have opportunities to choose how to live your life. You can set your terms. You can even revise your terms. It's all up to you, as long as you remember that you have a choice. You can choose to live with MS or be its victim. What will it be?<br />
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<div style="text-align: center;">
<b><span style="color: #45818e; font-size: large;">MOST PEOPLE WITH MULTIPLE SCLEROSIS <br />LIVE TO THEIR ANTICIPATED LIFE EXPECTANCY</span></b></div>
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Given this fact, why choose to be its victim?<br />
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Here is where choice is everything: you can choose to curl up into the fetal position and stop living, or you can choose to move forward hesitantly, or you can just decide, what the heck, I'm just going to go back to LIVING MY LIFE because there were always obstacles to whatever it was I wanted to be doing anyway, EVEN BEFORE DIAGNOSIS.<br />
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Even those with extreme disabilities can CHOOSE to continue to do what they can do, can CHOOSE to focus on ableness, can CHOOSE to keep moving forward as a whole human being. Watch the Special Olympics sometime. Be inspired. Even better... be empowered.<br />
<br />
When you actively, consciously choose to move forward with positive energy and optimism, you are choosing to live an empowered life. An empowered life is lived when you are educated about your challenges and have come to accept them and persevere in the face of them.<br />
<br />
MS is only one obstacle of many that can befall a human being. If you learn to live your life believing that obstacles are opportunities to learn, grown and improve, then even something as monstrous as MS can't keep you from living the whole, rich and interesting life you deserve.Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-34113302050346466842014-03-29T00:30:00.000-07:002014-03-30T09:20:39.325-07:00National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 2: Gratitude, going outside, the Paradoxical Commandments and the New You<div class="separator" style="clear: both; text-align: center;">
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Here are more tips for overcoming the challenges of an MS diagnosis using a positive attitude.<br />
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(see <a href="http://mycraterbrain.blogspot.com/2014/03/national-multiple-sclerosis-awareness_28.html">Part One: Steel yourself, look away from the belly button and cut some cords</a>)<br />
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<b>3. Express gratitude.</b><br />
When you consciously count your blessings (I mean daily), you reset your focus to looking for the good in the world. This is not a one-way ticket to Pollyanna-ville, people. It's retraining your attitude. The world can throw its worst possible ever crap at you, and you can't control that. But you CAN control how to deal with it. And attitude is how that happens.<br />
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Take a journal (or make a digital journal) and spend 5-10 minutes a night sharing what you are grateful for. Need prompts? I have included a list of prompts below. We often forget all the awesome things that we encounter in the course of a day; a short list makes these easier to recall.<br />
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List of Gratitude prompts (feel free to cut and paste onto a sheet of paper and insert into your journal)<br />
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<ul>
<li>Identify people who made me smile or laugh or feel great today... and share why</li>
<li>Describe something beautiful you encountered in nature today</li>
<li>Did you notice any "missing" symptoms or side effects today? Celebrate them here!</li>
<li>What or who inspired you today? </li>
<li>What sensory experiences were pleasurable for you today? Food, fragrance, touch, music, imagery, textures, sounds, spoken word</li>
<li>What media experiences were pleasurable for you today? Movies, television, podcasts, online activities, games</li>
<li>What social experiences were pleasurable for you today? Face time with friends, silliness online, family togetherness, special occasion or holiday, interaction at work, conversations with perfect strangers</li>
<li>What physical experiences were pleasurable for you today? Physical therapy, walking, trip to the gym, yoga class, bicycle ride, dancing, work</li>
<li>What soulful experiences were pleasurable for you today? Meditation, creative expression, attending a holy place, chanting, prayer</li>
<li>What terrible things have happened elsewhere that have made you grateful for what you have today?</li>
<li>What did you do today that made someone else happy?</li>
<li>What did you make today that was original? Cooking, artistic composition, gardening, construction</li>
<li>What places did you visit today which inspired or nurtured you?</li>
<li>Name one simple pleasure or success you encountered today... could be a "good hair" day or hitting all green lights on the way to an appointment or seeing the trees budding for the first time</li>
<li>What parts of your body, mind or soul worked extremely well today?</li>
<li>What relaxation activities helped you today... could be yoga or listening to music or taking a lavender bath or even having a martini or going to a comedy club, as long as it left you feeling better afterward</li>
<li>What do you like about your house today? your neighborhood? your town? your region? your state? your country?</li>
<li>What animals left a positive impression on you today?</li>
<li>What do you have today that you cannot live without? </li>
<li>What gifts were given or received by you today?</li>
<li>What challenges today gave you insight into your inner strength? </li>
<li>If you had a really rough day, try to find one good thing that happened all day. Big or small, write it down and tell it "Thank You."</li>
<li>What activity did you do today that you feel you are not good at, but you enjoyed anyway?</li>
<li>What challenged you today and how did you overcome that challenge (if not completely, then partially... making an effort and failing is STILL progress, after all)</li>
<li>Did you experience a triumph over some aspect of your MS today? What was it?</li>
</ul>
<br />
<b>4. Go outside and play.</b><br />
Great advice NOT ONLY for children. Fresh air, sunlight, even the diffuse light that presses through overcast skies is nurturing for your mental health. Dress for bad weather. Just do it. Even if only for 5 minutes. Or if you can't go out in it, drive in it. Ride in it. The point is to leave your house, even if you just go sit on your back porch.<br />
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Being out in nature daily (or even just leaving your house to go to the store!) is really crucial to keeping positive. It's a huge mood booster. It means that we might have to clean up, make ourselves presentable, which also has the impact of making us feel more put together, like a good hair day. If you're having a good hair day, do you stay inside? No! You go out and show it off!<br />
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I always used to cringe at the quote that a woman need only put on lipstick to feel better, but now I know the inherent truth behind that idea: if you prepare to go out into the world, you WILL go out into the world. If you hang around in pajamas all day, what are the chances? Next to nil.<br />
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Related to this are two other dynamic options for MSers:<br />
<br />
<i>EXERCISING</i> is hard when you are fatigued and/or in pain. Find even the lightest exercise possible and just do that. It's still better than <i>not </i>exercising at all. If you find yourself sitting all day or laying on the couch, and you have mobility, get up and walk around. Break up your idleness with trips to the laundry room to do a load or two, a trip to the kitchen to put some dishes away, or a trip to the bedroom to make the bed and put stuff away in your closet, or a trip to the mailbox, or a trip to the backyard to pull up some carrots. Find an activity and DO IT. I would rather do any activity with earbuds crammed into my head, listening to comedy podcasts, so that's one way I get myself going.<br />
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The point is to mix things up so you aren't prone and bedridden unnecessarily. Many MSers cannot move about, for sure, but many CAN, yet don't. They are afraid to, because they anticipate pain, discomfort or unpleasant side effects getting in the way. I know I hate to imagine going for a fast walk where there isn't a bathroom nearby. I've been stuck out in the middle of nowhere with a major urge before, and so I either walk in parks or downtown where I know of public restrooms, or I go to the woods and walk and, well, pretend that I'm a bear when nature calls and go off trail. (Haven't been caught yet.) Fanny packs, however unfashionable, are useful for preparing for this, by the way.<br />
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I'm not asking you to go out and run a marathon here. I'm saying, okay, if you feel like you need to stay where you are because you have digestive problems, then walk up and down the stairs every hour. Do some spinal twists. Practice some breathing exercises. Lift some canned goods like weights while sitting and watching TV. Go out in the garage and jump rope, counting as high as you can until you can't jump anymore.<br />
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JUST. DO. SOMETHING.<br />
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<i>PLAYING GAMES</i> is a better way to view activity for me. I hate exercise and the idea of the gym, but I love games. I'm more likely to exercise if I'm playing volleyball or trying jumprope tricks or challenging myself with Wii yoga or going for a swim at the beach or meeting my husband at the pickleball court. I'm headed to Hawaii soon and think I will give paddleboarding a shot.<br />
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Other kinds of games matter, as well. Board games. Game shows. Brain games played on your iPhone. Jigsaw puzzles, crosswords, Sudoku, card games. Yard games like lawn bowling or bean bag toss or badminton. They could be social games or solo games. They could be games that take forever or are ongoing, like Dungeons & Dragons, or they could be quick dice games played at a local coffee shop while you wait for someone to join you.<br />
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Games are about having fun, testing your skills, flirting with chance, overcoming obstacles, creative problem solving, laughing and achieving escape.<br />
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<b>5. Shut up and get out of the way.</b><br />
Sometimes we can be our own worst enemies. Try to notice any negative self-talk you engage in. It could be something you mutter under your breath, or it could be a self-deprecating comment you make in jest before a group of friends, or it could be a "voice" in your head telling you that you aren't good enough, healthy enough, smart enough, worthy enough, etc. Stop doing this. Consciously, even vocally, express it like this: "Stop it!" Don't judge yourself, don't feel bad if if happens. Just acknowledge it's there, then tell it to leave. You will, eventually, stop the negative self-talk once you are aware of it.<br />
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Getting out of your own way is a similar activity. We often stand in our own way, mostly out of fear. We decide that we can't exercise because it will hurt, for example, or we decide we are too old to learn something new, or we decide we aren't the best at something, so we quit doing it altogether. What we need to do is just do it anyway. Go to the gym anyway or take that walk. Go lightly. Don't overdo it. Just do it. Or... take a beginning foreign language class or start playing a new instrument. Expect failure. Expect to learn differently from your younger counterparts. Just do it. Or... learn to accept that we can't be perfect at anything and remember that it's the journey and not the destination that matters. Do your best at a task, and practice admiration for others who do it better. Share what you know with someone who is not as good at you.<br />
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Every day, you can decide you aren't strong enough or smart enough to go after something you want. What's stopping you? Well... you! Tell the hesitant You to move out of the way and just go for it anyway. Expect to make mistakes. Laugh at yourself if you do. Give yourself a brownie button later, regardless whether your efforts are met with success. Trying matters.<br />
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Inertia is a huge part of passive living, and it's often accompanied by fear. If there's something you are afraid to do, write it down. In example, write: I AM AFRAID TO ASK FOR HELP. Then, speak it out loud: "I am afraid to ask for help." Then write: I AM GOING TO ASK FOR HELP ANYWAY. Then, speak it out loud. "I am going to ask for help anyway." Do this enough times and you will find you are less and less afraid to ask for help and more and more comfortable with actually doing so.<br />
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I love the Paradoxical Commandments, which are related to this idea that we should just look askance at fear and do the things we are driven to do anyway. <a href="http://www.goodreads.com/quotes/6396-the-paradoxical-commandments-people-are-illogical-unreasonable-and-self-centered-love">Check them out here</a>.<br />
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<b>6. Let go of the Old You, embrace the New You</b><br />
The pre-diagnosis You is no longer You, it is a figment of your past experience which may lend great wisdom to things you do now or will do in the future. However, it is no longer You. You are a new person, reborn with a new reality.<br />
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No, you didn't get to pick the reality, but so what? When someone loses a loved one, they are also a new person, and they didn't choose that either. This is LIFE. There are lots of things that happen to people unexpectedly, and they can all either SUCK or they can be life defining in a way that can be made positive, as long as you embrace the opportunities inherent in any kind of change.<br />
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MS is not an excuse to just wallow in the past and not move forward. Instead, you need to look at what this New You has to offer. Not just as a worker-bee or fulfilling any other role to any other person or organization. You very likely have had to step out of these arenas and/or roles partially or completely. But the New You has valuable insights, experience, ideas, talents that can still be applied toward making the world a better place.<br />
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Sometimes someone will say that an MS diagnosis can really be thought of as a gift. And when someone says that in an MS forum, they are sometimes shot down by others who think it's ridiculous that any kind of diagnosis for any kind of chronic health condition could ever possibly be considered a gift.<br />
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But I do think that change is about opportunity as much as it's about loss. Yes, I have grieved over the idea that many of my life's dreams might be wiped out by this diagnosis, because that is what you do when you grieve. You let loss and impermanence roll around in your heart a while until something comes and flushes it out and then you move on. That something is usually an amalgamation of the highest of concepts: hope. Hope does return after loss, and if you can nab some, you need to stitch it to your soul so as not forget that it's always there, just in case.<br />
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Hope and dreams... these are not just abstractions, they are the seeds of anything we can aim for, goals, a horizon we build for our life's path. We just have to harvest them wherever we can and plant them when the time is right... usually after a period of fallow grief.<br />
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Why not embark on your life's path by making yourself a revised Bucket List of things you want to do or experience, places you want to visit, people you want to meet or spend more time with? You'll be surprised to find that the vast majority of things on this Bucket List are still achievable even if you have MS. Maybe some will not be 100% attainable--like, say, climbing a mountain--but you might take a training course in how to do this, or you might shoot for a similar goal, like hiking in the mountains overnight. Wouldn't it still be cool to hike in the mountains overnight, even if you couldn't climb the mountains outright? I think so.<br />
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The act of surrendering to a new reality can be challenging, I know. But once you realize that holding on to the past doesn't change the present, you'll encounter a sense of liberation. Clinging to the Old You is rather like tossing yourself into a huge bonfire, eating up all your energy, leaving only a few pathetic ashes to witness you were ever <i>there</i>. Don't do that to yourself. Step away from that fire, hold on to the flames that are perpetually kindled in your heart, your mind, your gut... you have everything you need within you to use these little flames to inspire new directions for the New You. It might mean getting some help from a counselor or therapist, but so be it. If you can arm yourself with the powers that the New You holds, you can live a ginormously enriching life.<br />
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<b>Coming tomorrow, Part 3: <a href="http://mycraterbrain.blogspot.com/2014/03/national-multiple-sclerosis-awareness_30.html">Worry, uncertainty, permission to be grumpy and choosing the life you want</a></b>Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.comtag:blogger.com,1999:blog-1578842703790428461.post-49710987203882084932014-03-28T00:30:00.000-07:002014-03-29T09:38:42.437-07:00National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 1: Steel yourself, look away from the belly button and cut some cords<div class="separator" style="clear: both; text-align: center;">
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People often comment on how remarkable it is that I stay positive even though I have MS. Well, it's not exactly the reality... I just make a bigger effort than most to approach my diagnosis on my own terms.<br />
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I have days where I'm really pissed off by this new course in my life, and some days when I'm saddened by it. I feel anxiety about my future in a way I never used to. It's not all smiley face stickers and thumbs up in my neck of the woods.<br />
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I used to be a creativity coach, and I guess I'm blessed with all of the lessons I've conveyed in that arena because they also apply here. People who are creative (in my case, I worked primarily with artists and writers) are constantly fielding rejection. Rejection sucks if you are a creative person funneling your entire identity into works of expression only to find out that someone else doesn't think they are good enough. That's like saying "you are not good enough."<br />
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If you've never created something, and then followed through like these people do--by asking someone to publish/produce/present it as part of a collaborative agent like a magazine, a performance or a galley--then you can't know just how shitty it feels for that collaborative agent to turn around and say, in effect, "You suck." And not just once in a lifetime, but many times a week for the more active and prolific creatives among us.<br />
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I have been rejected countless times. Probably in the thousands by now. I still write, and I still make stuff, and I still believe in myself. And I still get rejected. But I've been doing this for YEARS, and I've gotten used to it. That is not the same as liking the process or succumbing to its painful realities, but it does show that, over time, you can develop some personal steel and drive to move forward regardless what life throws at you.<br />
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MSers who have had MS for a very long time... they've been "doing MS" for YEARS as well, and more or less, they have also gotten used to it, which is not the same as liking the process or succumbing to its painful realities... it DOES show they have developed their own personal steel and drive to move forward regardless what life has thrown at them.<br />
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Here are some things I've taught my clients in the past which are easy to apply (almost seamlessly) to the challenges MSers face every day.<br />
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<b>1. Forget you have a belly button.</b><br />
It's called <i>navel gazing</i>, and it's a kind of unhealthy focus on oneself to the point that you lose perspective. It happens A LOT in forums where everyone is complaining about their symptoms or side effects of medications or all the bazillion other problems that hitch a ride with an MS diagnosis.<br />
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Stop it. Stop going there. Staring at your problems makes them bigger; it doesn't make them go away. Take a week off from forums; you will be surprised at how much better you feel because, guess what? You aren't focusing on your pain or discomfort or the lousy other things that are part of living with a chronic disease.<br />
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When you choose to focus on other aspects of your life, you might not "forget" you have MS, but you will push its reality further back as you push forward your awareness of other GOOD things in life, such as beautiful weather, a great meal with your family, a fantastic movie, laughter with friends over coffee, a dip in the local pool for a therapy class.<br />
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Even the simple act of noticing all of the world outside yourself is becoming part of the larger world again. You can't notice it if you are staring at your belly button.<br />
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<b>2. Cut some cords.</b><br />
Along with this idea of looking outside yourself, I like to blend in the notion that we should actively choose who we spend our time and energy with and what we spend our time and energy on. Time to cut some cords, people!<br />
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For those people in your life who require too much emotional energy and who never reciprocate, snip snip snip! Stop calling them. Unfriend them on FB or block them. Don't accept their invitations. Be kind to them when you do see them, but let the cord out, looser and looser and mentally cut it when you are ready.<br />
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For those people in your life who you can't cut away because of work or family obligations, practice the fine art of feeling sorry for them because, frankly, if they are that hard to be around, it's because of some misery that has nothing to do with you, even if they project it on to you. Having compassion puts you on the high road, a much better place to be because you can live with yourself knowing you have shown love and empathy and kindness even to people who have been hurtful to you.<br />
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For those tasks in your life that take up too much time and energy and don't require that you be the only one doing them, snip snip snip! If it's a volunteer position, politely step away and help fill your shoes if possible. If it's a job you hate, try to find a new one while still employed, and give the professional two weeks' notice. If it's household chores, get help from family and friends or pay someone. If it's projects you once loved but don't really love anymore, or can't even do anymore, offload them to people with stronger interests.<br />
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For those tasks in your life you have to continue to perform because of family or work obligations, get some help, find some alternatives that free up your time and energy or reinvent your role so that you don't have to manage the same volume of task mastery.<br />
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All this to say that re-engaging in the larger world outside your own inner one should be energizing, motivating and inspiring. If people and tasks don't fit these qualities, lose them or remodel them on your own terms. Then you will have an easier time being part of the larger world, and that will go a long way toward making you a happier person even with MS on board.<br />
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<b>Coming tomorrow: <a href="http://mycraterbrain.blogspot.com/2014/03/national-multiple-sclerosis-awareness_29.html">Part 2--Gratitude, going outside, the Paradoxical Commandments and the New You</a></b>Anonymoushttp://www.blogger.com/profile/04042342286747521090noreply@blogger.com