Monday, January 25, 2016

Day +174: Back into the groove

Days home: 165

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.

                                                       @ the office

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.


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.

I have a great leadership team at work and have friends in leadership roles that inspre me daily. Feeling very lucky to have the circle of friends and colleagues that I have. There is much to be learned through example. I'm looking forward to the challenge and the next chapter.

Until next time........


  1. I love your blogs. It like you're writing from inside my head. Our gbs/cidp heads. You're awesome!

  2. I love your blogs. It's like you're writing from inside my head. Our gbs/cidp heads. You're awesome!

  3. I love your blogs. It's like you're writing from inside my head. Our gbs/cidp heads. You're awesome!

  4. Did you have the stem cell transplant if so Can you tell me how it went im thinking about seeing if im a candidate for it as we

  5. Welcome back to the world of balance! That's what I call it when you try to balance your disability needs with your work needs. I remember when I had to move out of my office I needed a place to do my exercises, so I ended up using the emergency stairwell as I needed a door to hang the apparatus so you just gotten figure it out. Its awesome that we both managers who support us. It sounds like you are figuring out how to balance your day. Have you had an evaluation done of your space yet? The Accomodation team will review your set up to make sure your are sitting properly, the computer is the right height, etc. It did wonders for me. As I am writing this I am laughing because it seems that you and I do EVERYTHING together!! We worked in the same Event planning department, we moved to WFMS together, we both got some weird funky disease, we both now work in Wholesale. Its a good thing I love you! I am so proud of all the work you've done and how far you've come! I am honored to be able to call you my friend. Keep it up!!!

  6. Such a great blog! Your progress inspires my progress! Sooo wish we lived closer, unstoppable ;)
    Love you girl!
    Erin xoxo

    *we could have hot flash timers!! Ugh!! Hahahaha (so annoying)

  7. I’m glad to see that "you're in the groove" again. It's been a tough haul, but you can't keep a good gal down for long. Little by little, your balance and strength are coming back and that's what’s crucial. I can't wait to see what other progress you've made. No matter how much you advance, every step counts.

    Mathew Triano @ U.S. HealthWorks Spokane (North Side)