Is anyone else a Stephen Colbert fan? A good ol’ Colbert Monologue, of the Late Show with Stephen Colbert, is a way for me to digest the news, with a side of humor, so I don’t get too stressed out by it. Well, this last week, the last year, the pandemic and the peaceful transition of power have all gone to shit. Are these comedians supposed to be reporting on these important topics, such as pandemics, political coops, riots and insurrection? This is where I used to come for the sweet relief from all that!!!
This is where Stephen Colbert’s segment, Meanwhile, or Quarentinewhile, comes in. I love the flow of masterful, embellished descriptions of the painstaking art of the segment. Then there is the description of the slap stick method of putting together a Meanwhile segment (during the pandemic, Quarentinewhile.) Well, as much as I do try to curate my blog into a beautiful flow of what is going on in my life, MS research, and other MS topics, every once in a while it all gets to be too much. Sometimes, I feel a like I am headed for a nervous breakdown. So, these are the odds and ends existing in my drafts. As I endeavor to craft them in a more beautiful, artistic, and well thought out way, they crash and explode in my lesion filled brain and feel me with panic, as I realize the ever pressing need to just get the information out there! So, here’s a preview:
Insurance and Ocrevus Drama
I have insurance based in California. I feel like this is a common thing, many insurance plans are based upon the state of origin, and they contract with doctors within the state. That works out perfectly, or nearly perfectly, or let’s be honest, it works out well enough to keep paying the outrageous premium that is due every month! However, MSwhile, there is a pandemic going on, and raging in California, lighting the state on fire. Hold on Covid19, wildfires and earthquakes used to be our thing!! We can’t take a pandemic on top of that!!!
So my husband and I decided, since I was high risk and since the school system situation was so up in the air, we would rent an RV, drive to North Carolina, and my parents, retired college professors, could homeschool the kids. I do the fun stuff, like teach music lessons, and work on writing a story about living with MS, from my own, and my daughter’s perspective.
I had needed to get medical care while in North Carolina before, and I thought everything was fine and dandy, insurance wise. However, when after finally finding a place that my insurance said was in their extended network, I finally had my neurologist appointment. I needed a check up appointment and am due to receive my semi-annual Ocrevus infusion, but my initial appointment with the neurologist was denied coverage! This sent me into a freak-out spiral as I was in the process of arranging my infusion this month so I can receive it as close to on time as possible!!! Ekkkkk!!!!!
Come to find out, my insurance covers urgent care visits and ER visits, but not preventative care. I called my insurance, explaining, that if I can not get my infusion on time, there could be an emergency that I am trying to prevent, a relapse. This is a pandemic, I do not want to lapse on my Ocrevus, potentially have a relapse, and go to an ER… The insurance associate was very understanding, and she got my claim appeals underway.
Next step, call my Ocrevus Access Solutions team and update them on what the situation is. I began to calm down as I realized I have a team behind me, working hard to make sure I can get my Ocrevus infusion, without being saddled with an astronomical bill. I still am paying my insurance premiums. I need this covered! MS patients shouldn’t have to choose between getting a relapse, and being saddled with debt. If you are having a hard time figuring out Ocrevus coverage, give the folks a call at Access Solutions. They are very helpful, and dealing with the financial concerns with MS is overwhelming enough to bring on a whole lot of stress. Stress brings on relapses. Don’t stress, call, find out who is on your team, and they will work with you to get you covered. Fingers crossed, I should be getting my infusion within a few weeks.
Cannabis and Spasticity
Luckily, the creative side of my brain seems fairly unaffected with MS. I have no problem with coming up with ideas for expressing my MS in a creative way, but how to get information out to patients, and how to convey the complexity and insanity that multiple sclerosis patients deal with every day? I get fatigued, a lot. I get tired, I get overwhelmed, and I have pot holes in my brain. I lack the energy to complete it in a timely manner, I come up with another idea, but I know the blog needs a table of contents and I’m trying to figure out how to do that, without having to pay $230 more year to get WordPress to do it for me. The alternative? Search for the HTML code. My cannabis for MS spasticity is sitting in my drafts folder, with a table of contents you can click on, but the links go nowhere because I couldn’t find that part of the HTML code.
So MSwhile, I’ll keep working on getting that sorted out, but the skinny version is that there are clinical trials underway for the US version of Sativex. GW Pharmaceuticals seems pretty committed to trying to get this drug FDA approval, as they are conducting five phase three clicial trials. If you use canibus to help the symptoms of spasticity, Sativex/ Nabiximols is a balanced THC/CBD under the tongue spray that keeps your cannabinoid levels a little more stable than it would be if you are smoking, vaping, or ingesting cannabis. To my understanding, these clinical trials are actively recruiting. This is the number you use, to contact someone to find out if there is a clinical trial in your area: 1-833-GBIOSCI (424-6724)
For more information, see Nabiximols on clinicaltrials.gov.
My MS Book Ideas
I have three, rather large ideas for the book on my life, my MS experience, and how to express that to a large audience.
MS Zombie Novel: See my MS Horror Story for the first chapter. I have so many ideas for where I want this novel to go, but I struggle with the enormity of writing the novel, as it comes to my brain in, you guessed it, MS Guided Bits. My large vision for the novel, is one in which MS patients will play critical roles in a pandemic of a different kind, the Zombie kind. However, I struggle with the idea of should I keep this as a short story, or should I use the limited energy I have available to pursue this dream?
My MS Story, and the Story of a Sea Anemoea Drug for MS: The other MS book in my head, is one that follows my own MS story, which is going on eighteen years in the making, with some unusual MS research of a toxin, of a different kind. This one isn’t a zombie bite, but the venom that comes from a sea anemone. My Dad discovered this research, shortly after I was diagnosed with multiple sclerosis. I was all set to go to Southern India that summer, but I was diagnosed with Multiple Sclerosis in the winter, and it derailed my plans. So, I spent that summer in Idaho and North Carolina, hanging out with my grandma, my boyfriend, and my parents. I also learned about the research going on in sea anemone venom, and how it was inspired by a woman with progressive MS that was stung by a scorpion. She had a remission of her symptoms for two weeks, and then they came back. This precipitated research to what is the most effective venom blocker for MS symptoms. As I said, it is eighteen years later now, and I am trying to follow the strands of this research that I had feared had died out. I have very few leads, but I found out from a researcher who headed up the phase 1 clinical trials for safety, that it went well, with very few side effects. The medicine was deemed safe, but they are no longer researching it at UCI, and a gastroenterologist is now heading the research. I am piecing together a story of this investigational medication, which has bounced around funded by different pharmaceutical companies. The reason I am so attached to it, is it gave me hope at a time when there were only three MS drugs that slowed down progression, but not very reliably. I’m finding out more about potassium channels, the medication, its potential to target specific T cell responses, protect axons, and perhaps even remyelinate. So why is this research taking so long, when it seems so promising, not only for MS, but a number of other neurological diseases?
A Book for Kids with a Parent with MS Then there is the book for kids my daughter and I are working on. I was inspired by Julie Stamm’s book, inspired by her and her son’s journey. It’s a wonderful children’s book that looks at MS, through the eyes of her son. My son is also four, but my daughter is seven, going on eight. I feel like she needs an age appropriate book too, so we are in the process of writing one, but MSwhile…
So I’m going to close up shop here, because my MSy brain is telling me too. But wait…. one more thing!
Saavy Cooperative Opportunities
Savvy Cooperative, a coop founded by patients, for patients, to better facilitate the exchange of information from patients to medical researchers, is hiring. If you don’t have the time to work part time, or full time, you can still sign up to be a member. I made $650 this year, not just participating in gigs, but sharing gigs within my MS networks. Every week there are new gigs, for patient experts with medical conditions to share their insights, and get paid for those insights. Check them out if you have the time. I’m going to try applying for one of their positions, but whether I’m hired, or not, I’m still going to be sharing and participating in the gigs, and to that end…
Are you a parent of a child with juvenile MS living in Canada, or are you a teenager living with MS, also in Canada? Savvy is looking to possibly get going on a gig for you. If interested, reach out to me, through a comment on the blog, or an email to firstname.lastname@example.org.
Cosmic Kids Yoga
In the meantime I need to get to my portion of homeschool instruction. I didn’t plan anything, but as I am heading up the Health portion of our homeschool, I’m going to go do a Cosmic Kids Yoga exercise video with my kids. Stay safe, take deep breaths when the MSwhile gets to be too much. God be with you til we meet again!
Thank you for writing these! I feel like I have many similarities with your MS journey and you write it up so nice in your blog to share with the world. I hope you have made more progress with having Genetech cover more of these pricey infusions. I just transitioned to Medicare and they were helpful when I called them. So thanks for putting the companies name out there. Awesome book ideas. These topics will be relevant for many and for years to come!
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Thank you so much! Genentech was a lifesaver last year when my insurance wouldn’t cover my infusion out of state. Thanks so much for the encouragement on the book ideas too! 🧡