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. 

National Multiple Sclerosis Awareness Month || Three of my MS heroes

I recently posted about celebrities who have MS and who have done some things to get the word out, but I would be oh-so lost without the work of three individuals in particular who have made a huge effort to put good information and support out there for other MSers through their excellent use of media.

Amy Gurowitz || MS SoftServe and MSUnplugged

Amy has lived with MS for more than twenty years and is now bringing that experience, as well as her great sense of humor and sharp mind, to a new nonproft, MS Softserve. MS Softserve is a customizable, interactive online learning environment for people trying to make sense of their MS in a way that's empowering to the user. MS Software received the first grant ever awarded by the National MS Society. It makes sense that Amy should want to build MS Softserve, as she works as a consultant and guest speaker to help healthcare professionals better understand the patient experience and to be a stronger link in the patient-to-doctor communications chain that is health literacy. Amy has worked tirelessly with pharmaceutical companies, physician organizations, nurse educators to find ways to improve the lives of patients with MS. She's also the lively and likeable host of the radio program, MSLOL (Multiple Sclerosis Life of Learning) Radio and companion to the Two MS Chicks Radio program (now known as MS Chick and Ms. Diagnosed).

Deanna Kirkpatrick || MS Chick and Ms. Diagnosed and MSUnplugged

Deanna is a radio deejay by trade and a formal pharmaceutical salesperson, but she is also the amiable other half of the wonderful MS Chick and Ms. Diagnosed radio program with Amy Gurowitz. Deanna also teams up with Stuart Schlossman for the information, cutting edge radio program, MS Views & News. Both programs are part of a larger MS education media effort, MS Unplugged. She is also the chief administrator for the excellent Facebook group, MS Unplugged. Her story is a bit unique: she has lived with and treated her multiple sclerosis for several years until, in 2013, she was "undiagnosed" with MS and given a new diagnosis, Transverse Myelitis, which is a very rare autoimmune condition with many of the same symptoms as MS. Like Amy, Deanna's is a cheerful voice on the air and she works diligently to discuss the day in and day out experiences of living with a chronic, disabling medical condition in a way that helps others to understand their "new normals" and to do so with a measure of positive energy and a sense of humor.

Stuart Schlossman || MS Views & News and MSUnplugged

Stuart's work appeals to the journalist in me! He runs the highly informative radio program, MS Views & News, where he interviews all kinds of doctors and experts about specific issues related to MS, with Deanna Kirkpatrick as his sidekick. Stu's is a major nonprofit multimedia effort, which includes the MSBlog, a major website hub, a weekly newsletter and a YouTube page. Stuart was diagnosed with MS fifteen years ago, his efforts to develop these useful, informative educational media programs came after he was unable to locate the kinds of resources he needed on the internet. He also serves as a patient advocate for the pharmaceutical company, Biogen Idec, which produces several of the major DMTs for MS: Tysabri, Avonex, Rituxan and Tecfidera. Perhaps the greatest favor he does for the MS community is to ask the hard questions and to challenge or expose "snake oil salesmen" as well as those who would spread misinformation and build false hopes in the millions of patients with MS.

Personal note: You can have a bazillion organizations out there like the National Multiple Sclerosis Society and the Multiple Sclerosis of America, and they can jam their websites chock full of information, and they can be really good at this, but their websites are still voiceless and faceless... great for looking up information, but not great for getting the full human experience that these three MS superheroes provide with their tireless voluntary efforts.

We live in a great world when we see people like Amy, Deanna and Stu come forward with their passion, their skill sets and their willingness to put themselves out there in the combat zone for the rest of us to learn from. I have learned more about MS and the experience of having MS from these three than from all the books, magazines and organization websites out there COMBINED. My hat is off to all of them, as well as to the emerging new armies of bloggers, speakers and video artists who are inspired by the efforts of these three to bring real human experience to the conversation. Without these people, I would just feel like a helpless victim, but because of them, I aspire to do more, to be more and to take better care of myself.