November 30th marked 4 years of MS. My annual MRI's showed zero progression--which is a blessing! I'll take that!
I've been on Tecfidera since July, and after a hellish start, the medication seems to be working and my MS symptoms are minimal. Unless symptoms surge, I'm on twice a year visits and annual MRI's.
However, I had fallen a few times this Fall...on hikes, going up stairs, in the hall of my school, lol--mercifully no one saw that one! Falls are serious with MS because they can indicate progression. When I saw Kelsie, my Neuro PA, she said that because my scans were clear, it might just be an MS symptom and I could benefit from Neuro Rehab to help the PT's there pinpoint the issues and give me tools to walk better and stave off further problems.
On Neuro Rehab
Enter Anrqiue and Nanette--I couldn't have asked for two more kind, understanding, rock star physical therapists. I did about 6 weeks in NR from Jan-Feb. where I gained serious tools for the future.
They work with MS patients and the level of their understanding was astounding. Because I look normal, appear chipper and healthy, most people don't get the struggle, but they did. It wasn't my walking gait that was off, it's managing fatigue. MS fatigue is a beast. Evidently fatigue is also an RA thing, so I have a double-whammy. When I get tired, I get sloppy and I fall. From changing how I hike (the Anrique 15/5 method is my new go-to--ask me if you're curious), to how I walk, to how I stretch--I've made some big changes that are helping me.
It was really humbling to be there. Neuro Rehab is where neurological patients are sent, so whether it's stroke recovery, TBI or life-long disability, that's where they go. Oftentimes I was the youngest and/or the most able-bodied there. I saw patients with disabilities do the most amazing things, I saw stroke victims learn to walk again. It made me profoundly grateful and in awe of what the human spirit can accomplish. They inspired me. Being able to walk is a gift that I never want to take for granted again.
On Acceptance
I'm confronting some larger issues. I feel a lot of shame and embarrassment because of MS and now, RA. I don't like being the sick one; I don't like having to walk slower (I used to be the fastest walker/talker); I don't like taking the elevator; I don't like people looking at me like I talk about having a disease for sympathy or attention. It's been a lot of work to accept that I have a disease that isn't going away. In fact, it might progress and I do have symptoms to manage every day. It never, ever stops.
But, it's ok.
It's ok that I adjust as needed. It's ok if no one understands. It's ok to slow down and take care of myself. With the recent diagnosis of RA (see below) and major, major challenges on the home front with my kids, I feel like my dreams have shifted a bit. My ambition is tempered right now, and that's ok too. I think this is one of the most difficult seasons of my life, but I remind myself that this too shall pass and I'm going to be ok.
Yes, I'm still teaching high school and it's my calm in the storm. It's the one place where I feel less stress, fairly competent, and pretty happy. I get asked if I'll retire on disability. Nope:) I feel my health is not negatively affecting me at work and teaching gives me purpose. It's my life-calling and I really love it.
On RA (sigh)
Speaking of ok, I'm now a triple threat: MS, Hashimoto's Thyroid and now a diagnosis of Rheumatoid Arthritis (RA).
There's not an eye roll long enough to sum up my feelings here.
However, I also feel incredible relief because a lot of things now make sense. 4 years ago the intense joint pain/fever/fatigue/nausea that would come and go without pattern was what I deemed an MS "flare". My neurologist was a little iffy about that and said that join pain usually isn't an MS thing because it's not neurological. This led me on a path of trying to figure it out.
The joint pain sickness is what keeps me home, why I cancel events, why I feel sick, why I might have to spend time in bed on vacation (I hate that one), and continues to give me a lot of grief.
My amazing internist and I have tried to figure this out. Based on join pain, we fixed my thyroid, balanced my hormones, but still the pain and symptoms persisted.
Dr. Paradela looked at in October and said, "We've got to send you to someone smarter than me." Lol, is there anyone smarter? Doubtful.
She sent me to Dr. Pickrell, Rheumatologist, from SLC who visits St. George. Paradela assured me he's the best in the business and would figure this out.
Sure enough, mercifully a week later, I was sitting in front of Dr. Paul Pickrell. He was sharp, funny and talked a mile a minute--I loved it. As I started to tell him my symptoms (which are so weird and sporadic that I felt a little crazy) he just nodded his head and rapidly felt the joints on my hands and feet.
He confidently told me I met all the markers (intermittent joint pain accompanied by fever, severe flu-like symptoms, fatigue) for a rare form of RA called Palindrome Rheumatism. It tends to be found in MS patients with Hashimoto's thyroid. Sigh.
Dr. P ordered bloodwork and hand ultrasounds, but said I might look good on paper (of course I do, ha ha) and that sometimes the other conditions will mask PR. He said he enjoyed the validation, but regardless, I'd be diagnosed with this and treated accordingly--immediately.
He smiled (at least I'm assuming that what was happening under the mask) and said it is totally treatable with a medication with little side effect, will give me energy, mental clarity, take away the joint pain and even throw in some weight loss. Oh, and it's an anti-malaria in case I want to expand my travel options.
I thought to myself..."is this meth?"
Then Dr. P went off about Trump letting these secret out on this wonder-drug and if everyone used it we'd run out. It's the drug that Trump pushed to treat Covid.
Yep, it's hydroxychloroquine.
Dr. P then went off on Trump and I won't lie, I loved every minute of it and nodded my head in agreement. I might have given an "amen." Y'all know I am not a fan of Trump.
Now, here's where it gets interesting. Dr. P told me his weekend gig was with Pfizer and he's a medical supervisor for the Covid vaccine trials--what, what? He told me he was on the phone with Dr. Fauci and they were having some disagreements. I was just laughing at this point. Pickrell did tell me that in trials, auto-immune disease patients had massive relapses on the vaccine, so ponder that one.
I will not be taking the vaccine.
You've heard of the 6 Degrees of Separation from Kevin Bacon? Well, now I'm 2 degrees from Fauci. Very exciting.
Dr. P looked me in the eye and said that the 2nd week of February will be the best week of my life.
Huh? My 24th anniversary? I mean...
Evidently wonder drug takes a couple months to build up in your system and reprogram the troops.
I didn't freak out. It wasn't full-on RA, just a weird subset that doesn't cause damage and the medication would cure it. Yay!
December...my diagnostic appointment was cancelled.
January...it was cancelled again. In a strange turn of events, Dr. P left SG to work fulltime for Pfizer and I talked to a new doctor.
I found out that Dr. P jumped the gun. I don't have PR, I really do have full-on Rheumatoid Arthritis. I'm negative factor, which is good-ish? It's another AI that doesn't leave, must be managed and can cause permanent joint damage, heart/lung issues, etc.
Because I had set it my head that this wasn't a big deal, getting a full diagnosis was shocking--not MS shocking, but upsetting..
I had a flare in January that put me down for 2 weeks. I could barely walk into my school in the mornings, had to take a couple of days off and spent that time completely dropping the ball in every aspect of my life until it passed. I was in more pain with more severe nausea than I'd ever had. I started to get very worried.
Luckily it passed. It's February 20th now and I haven't had pain for almost a month. I'm assuming the hydro-meth is doing it's job.
Current Status
Yes, the cold bothers me considerably. The desert-cold feels like a sharp knife. Because of MS, I can't regulate my body temperature and warm-up & the RA allows cold to seep into my joints and it's unpleasant. Yes, I realize I'm literally in the warmest place in America, but it's still hard for me. Heat is way easier to manage. Yes, my end-game is still to retire to Hawaii.
For the record, the second week of February was great. Justin and I celebrated in San Diego. He took me to the sea, it was lovely. We ate vegan food, went to all our favorite beaches and I didn't hurt or get sick...not even once!
What I'm worried about is having 3 diseases and I'm worried that maybe the immuno-suppression drug I'm on for MS is protecting my CNS but then pushing my immune system to attack my joints. What happens when my immune system is reprogrammed away from joints? Will it attack something else?
I'm researching and praying about perhaps stopping medicine to see if it can be managed otherwise.
I've always been an Eastern-medicine lovin' kinda gal and I am not thrilled with being on more than one medication that is doing who-knows-what inside of me.
I'm frustrated because I can't seem to lose weight either. Sheesh, with having so many food restrictions, I should at least be thinner, but no luck. However, the more pressing concern is feeling well and praying the RA tsunami doesn't return.
So, life goes on. My focus is on researching the next step, connecting with God to guide me and trying to be the best parent I can be as I support my kids with some very difficult issues.
If you made it to the end of this, thank you. Thank you for being my friend (some are family too) and supporting me. Thanks for seeing me despite the acronyms and believing in me. I appreciate you.
I'll continue on, as you are, and continue to have faith that things will work out and appreciate the small victories.
God bless:)
I've gotta give a shout-out to my 2nd cousin, Katrina. We are a week apart, both teachers and both have MS--crazy, huh! Katrina was diagnosed earlier this year and handled it like a rock star. She came down in January and visited me when I was so, so sick from an RA flare. I treasure her friendship and support!!
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