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!