Wednesday, May 27, 2015

WORLD MS DAY: Diagnosis anniversaries: what is the point in celebrating?

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.

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.

My husband thought it was weird that I should even want to celebrate. "Celebrate what?"

More than 50 friends joined me in
a virtual celebration that night
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.

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.

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.

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.

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.

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.

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.

The fact is, despite the alarming news about the continuing high cost of DMTs that has been at the center of controversy in the media recently, 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...).

But I got to thinking about what would happen if my insurance company really wouldn't cover my therapy anymore.

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.

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.

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.

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.

  • Would I be willing to take higher risks with the other orals?  
  • Would I be willing to try one of the injectibles? 
  • What would happen if I could not tolerate any of the other medications? 
  • What would happen if I didn't take any medication?

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.

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.

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.

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.

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.

Remember, these are lifetime medications. I must take them as long as I have MS.

Or must I?

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.

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.

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.

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.
Demyelination is caused by the immune system
attacking nerve cells in the central nervous system,
which results in the brain being less able or unable
to send critical messages to all other parts of the body.

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.

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.

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.

Other therapies are in the pipeline but even with great results in large, longitudinal studies, they still won't be available for years.

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.

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.

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.

So what happens, then, if I decide to not take any medications at all?

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.

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.

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.

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.

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).

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 presumably for the dispensing of these services.

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.

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?

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.

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.

Friday, April 3, 2015

MS Warriors are Heroes, too

After yesterday's rant, I found this today. Made me feel a little better. Haven't received any hate mail yet either after I dissed the pink ribbon establishment. Maybe the trolls are on Spring Break? LOL

Thursday, April 2, 2015

RANT: Can you put away your pink ribbons just this once so we can get some MS awareness here, please?

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:

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.

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 know 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.

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.

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?

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.

And yet, who is wearing the prism ribbon? Hmm?

(Oh, and PS: orange is the awareness color for Leukemia as well. Another kind of cancer.)

I have friends who have survived 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 are because they are alive. That sounds suspiciously, to me, like a cure.

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).

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.

(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.)

Let's face it, MSers are guinea pigs. 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.

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 edu-ma-cation here, sharing some examples of ordinary people with MS and how it doesn't kill them, but neither does it make them stronger:

* 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 or safely care for her children.

* 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.

* 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.

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.

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.

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.

Imagine telling a cancer patient to just "power through it," "buck up" or "learn to live with it."

That's what MSers hear everyday. That, and... "At least it's not cancer."

See original infographic to read more
about appropriate conversational
etiquette for those who don't have MS
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.

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.

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."

There is a luxury to that which can never be enjoyed by someone with MS.

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.

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.

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.

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, that is heroism, not racking up big bucks in some ribbon campaign and women walking around in pink tennis shoes.

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.

If only an MSer could do this. Let's be clear: while a minuscule handful can do this, the vast majority cannot. It is not because they aren't trying hard enough, or that they aren't strong enough warriors, it's because they cannot.

You would not ask someone with a broken leg to run laps. That would not be fair.

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.

I need to point out here that I have amazing loved ones who don't 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.

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.

Yes, people die 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 worse.

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 does die. Your life as you knew it is gone. You do not get to go back to it. Ever. Even breast cancer survivors I know have said they are back to normal. For MS, that is never possible. Not without a cure.

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 95 percent of them survived and are cancer free today, or if they did die, they died cancer free.

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 survivors today than there are MSers. Period.

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 zero 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 zero 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.

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.

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.

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 granted by the Susan G. Komen foundation, whereas multiple sclerosis was given $112 million in research money from the NIH, plus $48 million from combined efforts by the NMSS.

Not making this up.

There is a significant difference between $924 million and $160 million, is there not? Like, a more than fivefold difference?

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.

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.

Wednesday, January 7, 2015

Napping. I can relate. [MS Fatigue]

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.

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.

From the Dose: 15 People Who Just Needed a Nap

For this to work, just click on the link to see the images, then follow along with my comments below.

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.

I have also slept in those overstuffed chairs at the mall. And whoever decided these were a good idea deserves eternity in nirvana.

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.

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 that irresistible.

3. I have fallen asleep in yoga classes, but only in the corpse position. And snored. I am not ashamed.

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."

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.

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
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.

8. Who hasn't slept while using public transportation? Trains, planes, ferries, automobiles. Yes, yes, yes, and yes.

9 and 10. See #4 anecdotes.

11. This girl would never fall asleep in any place where food would be readily available and deliverable.

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.

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.

14. That is just too adorable. That is all I have to say on that matter.

15. I'm pretty sure I wouldn't be able to do this. Still, I am impressed.

Thursday, January 1, 2015


I used to do resolutions which were top 10 lists for personal, career, health, writing life, etc. (see below). I was way 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?
And because I'm serious, here are my top 1 lists (2 different categories for body, mind or soul). You can create your lists according to your needs. This just works best for me.

1. Health (body) -- Exercise more regularly, even if it's easy. Just make it regular. MS means I shouldn't 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.

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:
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:

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 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. goal was never to be Queen Sleep Tech.

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.

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. 

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 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. 

Friday, December 26, 2014

Quarterly Gratitudes from an MSer: December 2015 edition

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. 

Second, I'm happy to wish everyone a fabulous holiday season!

Third, I'm gonna get right to it because it's redundant to start a list with a list, no? 

Just one of many
great resources
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. 

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. 

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!

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. 

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.

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.

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.

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.
Tesla 3 MRI: Extra roomy!!! 

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. 

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.