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.

LOST: A loved one to chronic incurable disease

I lost a friend today, someone I've taught with in the science fiction convention world in the past, someone who has a daughter the same age as mine, someone who shared my literary sensibilities, someone I have laughed with countless times and admired for his stubborn desire to live life on his own terms.

We met 11 years ago last April at a regional event, when he was just starting to break in as a SFF writer. Now his bibliography includes hundreds of short story publications, credits in anthologies and collections and more than a dozen books, including a potent memoir about surviving cancer.

Today he died of cancer of the liver after 6? 7? years of fighting different onslaughts (stage IV colon cancer among them).

He kept going, though. He kept working until disability was his only option. He jumped through the ridiculous flaming hoops of our heartless insurance system. He traveled when he could, and wrote until he could no longer pick up a pen or read the words on his laptop.

He was in pain much of the time, he had moments of all-out depression or hair-raising anxiety. He lost functionality in his body that many of us, even with MS, still enjoy or take for granted.

He did not live long enough to see his daughter graduate, which makes me terribly sad. She is a beautiful, strong young woman and they were intensely close. She will survive this because she is cut from his cloth, but it is still heartbreaking to accept.

I was always hopeful for him. He had a relentlessly sunny outtake on life and had made it a practice to turn the bad stuff that happened to him into something he could use to strengthen his resolve. I would see him at a convention and he would look great, then he would disappear between convention seasons as the cancer claimed other parts of his body. Then he would go through the rigors of chemo and radiation, tamping down the cancerous uprisings, and return for yet another season of sci-fi conventions. In between, he continued to write and publish and won some well-deserved accolades. The guy is talented, after all.

He also tattooed his radiation and chemo exploits on his scalp and his wrists and wrote often about his cancer struggles in a way that made it possible for us all to manage its horrors. So public an approach no doubt made it harder for him in some ways, but the response to his words was broad and resoundingly supportive.

He became a hero for so many of us. A small video house is still in the process of making a movie about him, and he has already starred in smaller videos that walk viewers through the experiences of his active involvement in the Human Genome Project. (What else would an SFF writer do but use cancer as an opportunity to take a live role in studying the science behind cancer?)

Well, a lot of others would give up or recede into obscurity, by my friend didn't. He decided instead that he would dance with this new partner, call it names, have fights with it, laugh at its face, have it tested and treated experimentally via the NIH.

Perhaps his biggest challenge was losing his cleverness to the vagaries of pharmaceutical side effects; even working at 50%, his brain was still quicker than most of ours could ever be. Certainly most did not even notice his cognitive slippage, though he was likely hyperaware of it.

He and I emailed back and forth about this annoying "cog fog." It was something we both shared periods of together about a year ago. When he described what was happening to his thinking and creative processes, I could relate. I think it helped that I could share my same experiences honestly with him, that I didn't just pooh-pooh his fears of literally losing his mind because I was also experiencing the same sense of derailment.

When you spend your entire life working in intellectual pursuits like creative writing, the idea of losing your mind is WAY more terrifying than losing your legs. There are no wheelchairs for broken brains. And nobody can see a brain as it atrophies... it's a long, cruel process of gradual decomposition. Meanwhile, others continue to expect you to function at one hundred percent when, in fact, your brain has dipped to less than fifty and all you can think is "THIS IS IT... I will no longer speak again, or be able to understand spoken language directed at me, or find the right words and then be able to transfer them from the jail cell that is my broken brain to the page because all the mechanisms that allow me to type or write by hand are also compromised."

He didn't believe in Heaven, nor do I, not in the religious sense. He was far more convinced he would become worm meat and that will be all, which he was comfortable with. And why not? He lives on through his published words and tens of thousands of people whose lives he's already touched through his writing, his teaching and his inspiration as a speaker and blogger.

I still hope he is pleasantly surprised to find his soul bathed in white light in this moment, moving to the next level of his life pain free, fingers flying on his celestial laptop even now.

I'll be looking for a new star in the sky tonight.

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.

Wordless Wednesday: In honor of "Memory"al Day Weekend

Step right up, get your tickets to some GOOD NEWS...

Today, my MRIs (all 1.5 hours of them, complete with an IV full of gadolinium dye) showed the following:

• All previously active lesions are now officially inactive (yay)
• All previously "questionable" lesions are no longer present (yay)
• I have no new active lesions (yay)

Blood tests will confirm that my body has adjusted well to the Tecfidera; I will have those results by the weekend. Previous tests when I wasn't feeling as good as I am now showed my liver was metabolizing the medication just fine, so it's a safe assumption that my liver is still functioning well and I will be able to continue to use this new oral med, as it seems to be working for me. The manufacturer has proven to the FDA that it is safe to use 4 years out, so I'm feeling great that I might NEVER have to go the route of injectible medications with side effects. 

I will get a neuropsychological screening done this summer to establish a cognitive deficit baseline, and I will review my arthritis and carpal tunnel issues in both wrists also this summer to see if I still need surgery. I will also have my left big toe checked for arthritis or gout and move forward accordingly. 

I also have permission to double my wakefulness medication (modafinil) if I should get hit by a period of super fatigue (like I had last April, which caused me to miss both MS walks I had signed up for, in fact). 

I'm psyched to hear this news, of course, and it means I can let my energy levels shift away from concerns about disease progression so that I may invest more of my focus/attention on my work in the sleep medicine field. I've discovered that the more I work and the more I involve myself in other intellectual pursuits like writing, which don't shine a glaring light on my MS, the less I am stressed by it and if I'm having symptoms, they are barely noticeable if they are present at all. 

And that's what I'm going to leave you with, dear reader, as a closing bit: the less you examine your illness, the less it seems to bite back. I know I am lucky in that I have a mild form of MS which is not physically apparent to people around me, and I know that others with major mobility issues will be challenged to NOT always be thinking about their illness, because being out of balance or lacking movement in an arm or the sight in one eye can be terribly present... but in the end, we still can choose where to focus our attention, and if it's toward things that are life-affirming, positive, and helpful in some way to the community, then how can that NOT be a better approach? 

Thanks to everyone in my life--family, friends, doctors, nurses, technicians, pharmacists, insurance payors, MS cohorts--for buoying me up through this challenging year. And thanks, to, to Biogen Idec, which manufactures Tecfidera. I have been hearing all kinds of good news from my peers who started "Tec" before I did; I am so pleased to be part of the good news community now! 

One year MRIs TOMORROW...

About an hour and a half in the White Tube of Death (WTD) means I'll be taking a lil' somethin' something'...

We will be looking for the following in my films:

• Lesions that used to be active but are now smaller and/or inactive (yay)
• Previous "questionable" lesions which are now smaller and/or inactive (yay)
• New active lesions (boo)
• Old lesions that are STILL active and the same size or possibly larger (boo)
• Previous "questionable" lesions which are larger and/or active (boo)

This will require contrast dye which explains the long time spent in the WTD and which feels, as my friend ES accurately described to me last night, as if you are a carry-on suitcase jammed into the luggage compartment of an airplane.

If I get more yays than boos, then I'll chalk it up to my disease modifying therapy (Tecfidera) working for me (hey, I've adjusted to it--the least it can do is work for me, right?) and overall good management of my disease course through healthy lifestyle (stress management, good sleep habits, nutrition supplements, primarily).

If I get more boos than yays, we might have to go back to the drawing board on the DMD to see what else might work.

But I feel pretty good these days and expect the former, not the latter, to occur. I reallyreallyreally hope I don't have to change pharmaceutical course because that will probably mean going from oral meds to injectables and that's not really in my plans...

Wish me luck!

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.

Join me for the SEATTLE AND/OR BAINBRIDGE MS WALKS THIS COMING WEEKEND!

BAINBRIDGE ISLAND MS WALK (TEAM || ROCK WALKERS)
Date: Saturday, April 12, 2014
Location: Starts at BHS and going through Winslow, as I recall (map online is not working)
Address: 9330 NE High School Rd, Bainbridge Island, Washington (BHS)
Site Opens: 9:00 a.m. - 1:00 p.m.
Opening Ceremony: 9:45 a.m.
Route: 2.5 miles

SEATTLE MS WALK (TEAM || BENAROYA RESEARCH INSTITUTE)
Date: Sunday, April 13, 2014
Location: University of Washington campus, Burke-Gilman Trail
Address: 3870 Montlake Blvd NE, Seattle, Washington
Opening Ceremony: 9:45 a.m.
Route: 4 miles

Links
Here's the link to the local team, the Rock Walkers. Go there, read the stuff there, click on Join Our Team or Donate to Walk MS. And here's the link to the Seattle Benaroya Institute Team. OR... you could go to my local personal page or to my Seattle Walk page to read what I have to say about the local MS Walk here and either Donate To Me or Join My Team.

I hope to nab a few friends to put in some time walking. It's so much fun and the weather is always nice. Donate or not at your discretion. I'm less about fundraising this year and more about teambuilding and building my support network. And heck, the more the merrier! So please consider helping a friend out so she doesn't have to walk alone, with the fire.

Walk with ME! An invitation for YOU, to join ME, in the battle against MS... it will be fun, I promise!

BAINBRIDGE ISLAND MS WALK (TEAM || ROCK WALKERS)
Date: Saturday, April 12, 2014
Location: Starts at BHS and going through Winslow, as I recall (map online is not working)
Address: 9330 NE High School Rd, Bainbridge Island, Washington (BHS)
Site Opens: 9:00 a.m. - 1:00 p.m.
Opening Ceremony: 9:45 a.m.
Route: 2.5 miles

SEATTLE MS WALK (TEAM || BENAROYA RESEARCH INSTITUTE)
Date: Sunday, April 13, 2014
Location: University of Washington campus, Burke-Gilman Trail
Address: 3870 Montlake Blvd NE, Seattle, Washington
Opening Ceremony: 9:45 a.m.
Route: 4 miles

Links
Here's the link to the local team, the Rock Walkers. Go there, read the stuff there, click on Join Our Team or Donate to Walk MS. And here's the link to the Seattle Benaroya Institute Team. OR... you could go to my local personal page or to my Seattle Walk page to read what I have to say about the local MS Walk here and either Donate To Me or Join My Team.

I hope to nab a few friends to put in some time walking. It's so much fun and the weather is always nice. Donate or not at your discretion. I'm less about fundraising this year and more about teambuilding and building my support network. And heck, the more the merrier! So please consider helping a friend out so she doesn't have to walk alone, with the fire.

National Multiple Sclerosis Awareness Month || American Cities Show Their Love

These images do my heart a lot of good.

Boston MS Awareness

Times Square MS Awareness

Salt Lake City MS Awareness

Seattle MS Awareness

Vegas MS Awareness

Chicago MS Awareness

Niagara Falls MS Awareness

Minneapolis MS Awareness

National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 3: Worry, uncertainty, permission to be grumpy and choosing the life you want

Here are more tips for overcoming the challenges of an MS diagnosis using a positive attitude.

(see Part One: Steel yourself, look away from the belly button and cut some cords)
(see Part Two: Gratitude, going outside, the Paradoxical Commandments and the New You)


7. Stop worrying
One of the most common behaviors that follows on the heels of an MS diagnosis is the seemingly incessant need to worry! Stop it! Others smarter than me have already addressed this bugaboo:

• Worry is a cycle of inefficient thoughts whirling around a center of fear.--Corrie Ten Boom
• Worry never robs tomorrow of its sorrow, it only saps today of its joy.--Leo Buscaglia
• Our fatigue is often caused not by work, but by worry, frustration and resentment.--Dale Carnegie
• It makes no sense to worry about things you have no control over because there's nothing you can do about them, and why worry about things you do control? The activity of worrying keeps you immobilized.--Wayne Dyer
• If you know how to worry, you know how to meditate. It means to think of something over and over.-Joyce Meyer

Anxiety and worry are two things that really need to be addressed if you are going to move forward with optimism. They both take up way too much energy to ignore and may require that you seek out counseling to conquer them. Please do so, if necessary.

8. Learn to expect and to live with uncertainty.
People who grew up in truly dysfunctional households probably already have this skill in hand. I know someone who grew up with a loved one who was/is very likely bipolar, but their loved one refused to acknowledge it (which means their mood disorder remains, to this day, untreated).

My friend's childhood was a series of days in which he walked on eggshells in his own home. Talk about uncertainty. If he didn't walk on eggshells, he could easily attract the wrath of his mood disordered loved one. This is how he moved through childhood... tentative, leery, expecting the worst while hoping for the best. Don't feel sorry for him; from this, he learned survival skills by way of necessity. Now that he has MS, he knows better than to demand that life be predictable, but because of the unfortunate circumstances of his childhood, he also knows how to keep moving forward anyway.

However, this isn't the case for a lot of people, I'm discovering as I move through different forums and hear people's different stories about how they are dealing, or not dealing, with an MS diagnosis.

Others can be way more challenged to deal with the loss of control that uncertainty possesses. You can't control anything in life (with or without MS)... not really. You can work hard and still lose your job. You can walk across a quiet street and get hit by a bus. You can try to have children over and over again without success. You can practice an art or craft and never master it. You can tell someone you love them a million times and still lose them because they don't believe you. You can make all the best laid plans o' mice and men and still find yourself in the center of a tornado where everything you cobbled together in your life is lost.

How you deal with this uncertainty depends upon how you relate to the way you manage time, energy and resources. The more flexible you are with your time, energy and/or resources, the easier it will be to manage uncertainty. But if you live by a rigid and inflexible schedule, if you still continue to "push through" periods of fatigue because you still believe you can (P.S., the secret is out! With MS, you can't), or if you are stingy when it comes to using your resources to guide changes in your life (being willing to spend more money for convenience products or pay for help, for instance), then you will be challenged to manage the uncertainty that comes with MS.

A suggestion here... make some plan Bs for specific situations in your life where you know that uncertainty can derail you. In example, make contingencies for days when you're hit by a wave of fatigue or a major migraine or temporary blindness in one eye. It may happen on that day when you had major plans (going to work, taking care of a lot of complicated errands, volunteering for your kids school, attending a critical board meeting). A plan B is your way to be part of those major plans even if you are waylaid by MS symptoms.

You could, for instance, work with your boss to make up for lost time at work or issue a protocol for rescheduling or reassigning tasks as a plan B.

You could ask for help with your errands from a handful of friends who have offered their support in the past; make a plan B phone tree, even, for such situations.

You could have a backup volunteer in place for those times when you can't do the school bake sale after all.

You could attend the board meeting via cell phone or iPad or get someone to record it or read your presentation in your stead.

Some of the most successful people I know in life are those who regularly anticipate the need for a plan B and use it when something happens. Not just MSers, mind you, but people in general who see the value of moving forward and not letting obstacles get in the way. You don't always have to jump over the hurdle, see? You can always walk around it, hire someone to do it for you, or push the darn thing over and walk ahead. There's more than one right way to do something.

This is not to say that a plan B will always fix a problem. Sometimes MS hits and there's nothing you can do. Then your plan B really needs to be one of surrender and acceptance; tomorrow will be another day to try again.

9. You don't have to smile all the time!
It's okay to admit that you feel like shit. It's okay to say, crap, I need help today. It's okay to recognize that your energy is nearly depleted even if you just got out of bed and, acknowledging this, go back to bed. You don't have to be Miss Happy Face all the time. That's perpetuating a lie. People who only see you has Miss Happy Face will not have an accurate portrayal of MS, which is a disservice to all who do suffer terribly at the hands of this disease. You have permission to feel grumpy. You have permission to cry. You have permission to be snarky and to call the disease nasty names. You even have permission to be annoyed by well meaning people who seem to argue with your diagnosis when they say "But you look fine!" when you are feeling Not-So-Fine-At-All.

You didn't ask for this. Still, it's up to you to decide how much grace you want to apply toward managing it. Some people are saintly about it, but most of us are more provincial... we get pissy or depressed or disappointed. And it takes its toll, for sure. People who put on the perfect happy face and never complain are repressing legitimate emotions and denying themselves an opportunity to deal with the dark side of their chronic condition. It's normal to feel negative emotions, even healthy. Don't shortchange yourself an opportunity to more precisely hone your coping strategies... by getting these feelings out in the open, acknowledging them and dealing with them, you are going to be a much stronger person. If you don't, you can only expect resentment, anger, frustration and outrage to consume you over time.

But you don't have permission to hurt others. Responding to their insensitive comments with information and education is a far better approach. And you don't have permission to lash out or to make comparisons with other people's pain or health issues. Comparing apples and oranges is never helpful for anybody. And you definitely don't have permission to use your condition as an excuse to make everyone else around you miserable. Nobody ever has the right to do that, no matter what's wrong with them.

Just be honest and keep it classy. If you are having a crap day, and somebody asks how you are, and you know they can tell you are having a crap day, just say it: "I'm having a crap day." Shrug. Move on. Do or don't do as determined by your body and your energy level. Don't make it everybody else's problem, just find help when you can, defer what you can, and tend to your situation until it turns...

Because with MS, it usually does turn itself around... three days of blindness in one eye forces you into bed and then, boom, you can see again, your headaches are gone and you feel great! We often focus only on our relapses but how often do we celebrate the end of relapses and the beginnings of remissions? If you have energy and you feel good, use it while you can! And if you have nothing to work with, well, then it's time to lie fallow until the pendulum swings back in your direction. For the vast majority of MSers, symptoms come and go and our biggest job is to just manage them. That means making the most of the best days and riding out the worst ones.

And finally...

10. Choose.
Repeat after me. I have MS, it doesn't have me.

People all around you are dealing with chronic illness, not just you. They are diabetic, they have asthma or terrible allergies or arthritis or fibromyalgia or mood disorders or a host of other health problems that can create barriers to living a full life. Find those people, ask them how they push through it all. The fact is that multiple sclerosis is two words, not a sentence! And you still have opportunities to choose how to live your life. You can set your terms. You can even revise your terms. It's all up to you, as long as you remember that you have a choice. You can choose to live with MS or be its victim. What will it be?

MOST PEOPLE WITH MULTIPLE SCLEROSIS
LIVE TO THEIR ANTICIPATED LIFE EXPECTANCY

Given this fact, why choose to be its victim?

Here is where choice is everything: you can choose to curl up into the fetal position and stop living, or you can choose to move forward hesitantly, or you can just decide, what the heck, I'm just going to go back to LIVING MY LIFE because there were always obstacles to whatever it was I wanted to be doing anyway, EVEN BEFORE DIAGNOSIS.

Even those with extreme disabilities can CHOOSE to continue to do what they can do, can CHOOSE to focus on ableness, can CHOOSE to keep moving forward as a whole human being. Watch the Special Olympics sometime. Be inspired. Even better... be empowered.

When you actively, consciously choose to move forward with positive energy and optimism, you are choosing to live an empowered life. An empowered life is lived when you are educated about your challenges and have come to accept them and persevere in the face of them.

MS is only one obstacle of many that can befall a human being. If you learn to live your life believing that obstacles are opportunities to learn, grown and improve, then even something as monstrous as MS can't keep you from living the whole, rich and interesting life you deserve.