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.

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.

RESOLVED FOR 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: http://www.jleukbio.org/content/69/4/522.full. 

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: http://www.ncbi.nlm.nih.gov/pubmed/22844861

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. Fine...my 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. 

How I am feeling at the end of 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. 

Quarterly Gratitudes from an MSer || Top Ten GOOD THINGS in my life right now

Burning Bush, September 1, 2014. 

Welcome to my front porch!

Plumbago blossoms

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.





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.

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.

Rose of Sharon

   3. I just spent 10 days in New York and I lost weight. 
   Not a lot. But enough that I can sigh with relief and 
   know I won't have yet another 5-10 pounds to add to 
   my list of things to take care of. It wasn't all hearts
   and flowers, though: the heat got to me on two 
   separate occasions, and I had a violent tremor 
   that I'm sure was my body's response to muggy high 
   heat and the stress of travel. But I'm feeling much 
   better now that I'm home. 

False spirea

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.

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.

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.

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!) I'm thinking about writing about my MS now, more formally, as well as other topics. 

Pansies popping!

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.

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.

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.

New MS drug approved!

This one's from the maker (Biogen Idec) of the drug I use (Tecfidera). From the MSAA article: 

"On August 15, 2014, Biogen Idec announced that the United States Food and Drug Administration (FDA) had approved Plegridy™ (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."

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 disease modifying therapies (DMTs). 

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.)

FOUND! My mind

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.

Gratitudes from an MSer: Top Ten GOOD THINGS in my life right now

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.

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.

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.

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.

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!

5. Great weather! I use sunshine as fuel. Warmth improves my mileage. What's not to be grateful about?

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.

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.

8. A freezer full of wild-caught salmon. I'm having some of it tonight. On the grill. AWESOME.

9. DVRs and Roku. There are times when I just need to ESCAPE!

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.

CHAOS MONTH: a 4-week contest to see who is stronger... Me or the MS

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!

I will:

• 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.
  
• 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)
  
• find out if I need to get wrist surgery for my arthritis/carpal tunnel issues
  
• 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!)
  
• 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)
  
• 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
  
• 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
  
• 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?)
  
• plan a graduation party as well as get announcements and invites out and create a Brag Board and slide show for my daughter
  
• finish two essays related to sleep medicine
  
• try to keep up with several blogs
  
• complete my sleep health clearinghouse website, which is woefully behind in production

My husband will:

• perform in several private band gigs as well as our hometown parade
  
• travel to Dallas for the annual business conference
  
• power wash, restain/repaint the deck and complete other major home maintenance repairs
  
• set up for the graduation party
  
• 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)

My oldest daughter will:

• complete her last season of high school water polo, which includes wild card and state tournament games covering 6 full days
  
• 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 team 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.
  
• attend prom (thank goodness she already has a dress!)
  
• interview for a scholarship
  
• attend the senior awards banquet (at least they will celebrate her accolades there)
  
• graduate!
  
• start Junior Olympics water polo training in earnest (4 days a week at a pool 50 miles away)
  
• pick up her lifeguarding job when polo season is over
  
• start physical training to be ready for Div I level water polo in September
  
• practice driving and get her driver's license

My youngest daughter will:

• attend the band end-of-year-banquet (which she also organized)
  
• vie for color guard captain title for next year
  
• complete another 4-day drum corps camp
  
• play in the band for graduation
  
• perform the winning show with Winter Guard one more time for the public
  
• prepare for a 2-month, cross-country drum corps tour
  
• attend a field trip to Wild Waves with Winter Guard

Somewhere in there is the whole emotional underlayer of:

• 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. Yes, I'm bitter.)
  
• 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. Yes, I feel robbed.)
  
• 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?)
  
• dealing with the unknowns of having MS*** (I live with this daily, but that doesn't mean it ever gets easier)

As well as the usual and sundry activities of daily living:

• yardwork*** (getting some help now and the worst should be over soon)
  
• laundry (it will lighten just by having one kid away from home)
  
• housekeeping*** (gonna start paying for this again)
  
• paperwork
  
• eating right
  
• exercising*** (literally NO TIME)
  
• sleeping
  
• medicine maintenance

After which I will probably collapse. If I don't before then...

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.

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.

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.

[Media Resources] Greater Delaware Valley MS podcasts

"Why Everyone Needs a Power of Attorney"
is the most recent program to be
broadcast and archived by the
Greater Delaware Valley Chapter
of the National Multiple Sclerosis Society.

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.

One of the best podcast series I have found for learning more about MS comes from the Greater Delaware Valley chapter of the National Multiple Sclerosis Society. 

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."

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.

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.

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.

Raising ourselves to be warriors: The Water Polo Match

My brain lit up like a roman candle last night at my daughter's water polo game.

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.

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.

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.

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.

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!).

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?

It was like these people were drunk. (I finally had to look behind me to check. What did I find? Obese, ugly, poorly dressed, toothless White Trash. Parents. Parents behaving badly.)

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.

I texted my husband: "The XXX team parents are shitbags." He texted back: "F them."

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.

Shitbags, indeed.

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.

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.

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.)

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. He was not obese, ugly, poorly dressed, toothless White Trash, either. 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.

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.

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."

It's always better to keep it classy in water polo, as in life.

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?

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.

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.

In my mind, our girls took home the win for the night for that reason. They get it.

As for the other team's parents? Not so much. Their loss AND their children's loss.

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?"

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.

They are playing polo together on the same team right now, training for JOs. No hard feelings whatsoever.

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.

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.

Sorry MS, but that's 15-0, in my favor, this time around.

Nope. Didn't do it.

So I was all gung-ho to participate in two separate MS Walks this weekend. And didn't do either one.

I'm telling you, fatigue is a sum-bitch.

I got home from my vacation Monday night. Exhausted.

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.

So Wednesday rolls around and I'm at the hospital all day with my mom who had major shoulder replacement surgery (she rocked it!).

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.

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.

Fugettabotit, there won't be no MS Walk for me this weekend.

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.

So today I'm up at a regular time, have done some laundry, revised my To Do List and have been tackling little this and thats 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.

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 this and that.

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.

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.

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.

I didn't really say anything in response because, guess what? I was too frickin' tired.