Playing Defense Against Life, Happy Thanksgiving, and Starting MS Treatment
- At November 22, 2017
- By Jeannine Gailey
- In Blog
- 3
Happy Thanksgiving, and Thanks for this review!
Thanks to Brian James Lewis for this kind new review of Field Guide to the End of the World at Hellnotes just in time for Thanksgiving gratefulness!
I got to visit Margaret Rhee’s class on pop culture and fan fiction and that was really fun – I even came up with a flash fiction exercise! And the class was really bright and asked good questions. Thanks, Margaret, for asking me!
I am also super grateful to my friends and family for the love and support they have sent my way, keeping me tied to the “real world” while I tried to recover from the sudden onset of severe MS symptoms. I’m also thankful for sunbreaks in November, my cuddly kitten Sylvia, and gardening stores that have cheerful displays despite the oncoming dark of winter.
Playing Defense Against Life
You can’t really do it, can you? I used to be on defense on my soccer team and I was pretty good at it – so far, not so in the “life” team. I’ve been trying to practice the best self-care I can lately, but last week I cracked off a large part of a back molar on one side, then two days later, chipped off part of a totally different molar on the other side of the mouth. Dental work (just an exam, xray, and grinding down the sharp points – the real work won’t happen til later) meant a resurgence of tooth pain and TMJ, and following it the next day with an MRI meant even more tension and grinding. And then I gave myself a concussion getting into the car in the rain. Nightmares every night this week – and did I mention a different doctor and dental appointment every day of last week – and today?
MS Treatment Begins
So I got the results yesterday through e-mail from my most recent MRI and not only does the neurologist think it’s definitely MS, enough for the insurance men to be happy with the official diagnosis, but I’ve actually increased the number of lesions in the last four months, and the inflammation hasn’t decreased the way the neurologist had hoped. Now the “lesion load” has gone from “low” to “moderate.” Seems like my brain is really angry. I went in for the neurologist visit today and he’s recommended gabapentin for the nausea and dizziness (which he believes is caused by inflammation on the brain stem lesion) and immediately starting a new MS drug called Tecfidera. We’ll see how I do – they both have a couple of nasty side effect but Tecfidera is one of the most effective treatments they have. (meaning it’s about fifty percent effective – still pretty pathetic in terms of effectiveness, in my mind.) First the doctor has to convince the insurance I can skip trying two other drugs most MS patients have to try before taking Tecfidera – he’s using the unusual ferocity and quickness of the onset of lesions this year as his reasoning. So much busy work has to be done by doctors – and because of required testing, patients too – just to get care. It’s insane.
Anyway, needless to say tomorrow is Thanksgiving, I can barely chew on my broken teeth and because of the TMJ. Wah wahhh. I’m trying to be thankful, I really am. Tomorrow it’s going to be just me and Glenn, and we’ll take it easy and watch “Charlie Brown’s Thanksgiving” and maybe the parade. It’s supposed to pour rain. But as you can see from the pictures above, we’re still trying to take advantage of every break in the rain to get out into nature – to my mind, one of the most healing things around. We will try to create opportunities for celebration and joy in what has been a trying season. I wish you and yours a peaceful and joyous Thanksgiving weekend, however you choose to celebrate – or just relax.
Deborah K Hammond
Hey there. You are such excellent people, you and Glenn. I am constantly impressed with team Hall-Gailey. I don’t know how MS has a prayer in this fight but it’s clearly doing its best. The “winning’ comes in how you deal with it all, I think, and you two getting out in the air and occasional sun, and Glenn cooking, and you continuing to write and engage—and in a deeply authentic way—I call you inspiring. And I am so grateful. And rooting for you every day.
Brian James Lewis
I am grateful I discovered you as well! Feels like having a person on the “home team” A lot of people will tell you that they’re sorry that you are in pain and have troubles, but only a person who is going through the same thing really gets it. Wishing you the best and I hope there are times when you can enjoy this day.
Jeannine Gailey
Thank you, Deborah and Brian. Wishing you a wonderful holiday season and plenty of light!