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.