Fast approaching is my 6 month immune sytem birthday (Feb. 3rd).
Back to Work
I have been back to work since January 8th, this is my third week back. My brain is beyond happy to be of good use again. Physically it is quite a challenge. My back and neck are taking the brunt of the adjustment, which is why I see both a massuese and a chiroprator once a week.
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My employer has been fantastic, letting me put in any needs with our accomodations department. I have slowly been making adjustments to furniture, tools and software to help where I struggle. There is significant palsy in the one hand still, so typing cannot be maintained for hours at a time. Now I can have Dragon software to do it for me.
Medical Tests
The good news: my clots seem to have been dissolved. There is still considerable pain in my arm, whch is likely phlebitis from the clots. Thank you baby aspirin for the help.
The challenge: hormone balance (sorry gentleman readers). My testing shows deep into menopause, and with that comes hotflashes and night sweats like something out of a horror film. I am not a candidate for synthetic hormones due to my blot clot history. Now I am researching holistic or naturally occuring hormones through food or supplement. Turns out Estriol comes from wild yam root, as opposed to Estradiol we are given synthetically. And soy also provides many benefits for balance. Also been supplementing with Chaste Tree and Flaxseed.
Physical
Physically I get stronger month over month. I still pay heavily when I overdue it. For example, on Sunday I got over 10k steps. My legs and feet were in agony that night, but the activity felt really good. I also picked back up the beloved Pilates class I hadn't attended since July. It's a mat class and a great way to get back to it. I hope to find a reformer class at some point to supplement. I ride my indoor bike at least 4 days a week, even though I max out at 15 min per ride. I have found online spin classes that I like. My elliptal machine is very stiff and difficult for me to get a long workout on, so I continue to work on that.
I caught my first post-transplant cold Dec 22 and am just now starting to feel it wean. It did brew a sinus infection for which I had to get meds. That was an unexpected urgent care visit last week. However, the anitbiotics worked quickly so I am glad I went. My new immune system has never encountered a virus before, so it will take it longer to fight them. The key is to watch for fevers and head to the ER if one pops up.
Follow Ups
I was postponing my 6 month checkup to Chicago due to them having a hard time getting back to me. Now they say they want to see me in March. Whether or not I go depends on them giving me enough notice (as a courtesy to myself and my employer). Their office staff is very busy due to the extensive media coverage over the last 6 months. The BBC just did a piece on HSCT. Unfortunately I emailed them in November and still have not received a date for my 6 month. I will have to email them next week to ensure that I get on the calendar in August for my 1 year. :)
Keep moving forward
I am starting to notice more of the pre-CIDP traits in me: craving physical activity, wanting to be out and about, my fighter spirit. I think the next year will be very telling as to how it all shakes out. My biggest wish is that I can comfortably be active and busy with little disability. Only time and the universe will tell.
I have a different perspecitve, on just about everything. I have taken on admin roles in a few support groups, and realize I like being a leader, motivator and peer. I like to show people what is possible, how to modify where they are limited. Plus, can I say, I have met some AMAZING humans on this journey. People that make me think "Steph get over yourself, you have it good". Every one of them has taught me something different.
Until next time........
