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........

Saturday, January 2, 2016

Day +151: How has it been 5 months?

Days home: 142

Sunday Jan 3, 2016 is my 5 month immune systems post-transplant b-day. A special shout out to the transplant vets before me who said "patience is key - it will get better".....were they ever right.

I bought an upright bike to get better cardio than I got on my recumbent bike. I watch free spin class videos online and ride (to the best of my ability). Today I started crying 6 minutes into my ride. It was tears of pure gratitude. It dawned on me that 6 months ago I never would have been able to pedal intervals of standing up and sitting for 15 minutes straight. Don't get me wrong, the riders in the video are on level 406, and I'm on level 3...but still......I will get there. In my golden fitness days, I did spin, kickboxing, yoga and worked out 5-6 days a week. I plan to get back.

It just all hit me at once. I AM HEALING.

I met with my hematologist Wednesday. We both got emotional. I was her first bone marrow transplant patient for auto immune disease vs. cancer. She was skeptical, but hopeful. In her words: "I'm just overjoyed. Your blood work is perfect. You are fairing better than all my other transplant patients". She has been my educator, cheerleader and comforter. She knows this procedure and its symptoms so well, having monitored cancer patients for 10+ years. If she is happy,.... I'm ecstatic.

I also met with an amazing GI doc last week. After all the ER visits due to stomach spasms from hell (I have never had these before) he wants to find out the "why". Chicago officially diagnosed me with Celiac disease, and I have been lactose intolerant for a decade. He wants to take it a step further and test me for all dietary intolerance and get the official diagnosis(es) on paper. From there my entire diet will be modified (for good) and ensure that I never ingest things that make my tummy unhappy.

PT and OT are very happy with progress. In 2.5 months I surpassed their expectations. I did their "homework" every day. I pushed myself. I was competitive. I wanted to get better. It worked. They have all but discharged me. They want to see me 1-2 months after returning to work, to ensure I am doing ok.

*Bay area peeps: if you need or know someone who needs either a heamo or a GI doc, email me.

I head back to work Jan 8th. Yep, its a Friday. I figure I will be overwhelmed, physically and emotionally, and might need the weekend to recover. Plus the majority of the day will be spent on the phone with IT trying to recover email, voicemail, going through 6 months of emails ACK! LOL

For my colleagues: I am looking forward to more shenanigans, problem solving, innovation and laughs when I return. I love my job and my colleagues.  Let's see what 2016 has in store for m professionally........

- Caught my first post transplant cold Dec 22. Still recovering. Luckily I never developed any fever, and got lots of rest. My coughing fits caused me to throw out my neck. It required visits to a chiropractor, PT and a masseuse just to be able to hold my head up. Very painful. I so hope my work colleagues stay home when they are sick. I'm really not interested in another cold.

- Overall not much change from the last post. Stamina,  strength & mood are all better. I will continue to struggle with several issues mentioned before (hand palsy, hot flashes, numbness, weakness, fatigue). Two things I hope to recover are jumping and a quick sprint (like to dart and catch something). The nerve message to my calf muscles and lower legs have not healed enough to be able to do either. It's entertaining to watch me try. I think I am jumping, but I am just bouncing...feet still on the ground. Although I can do some interesting dance moves and hold my balance. LOL

- I can also stand with my feet together, close my eyes, and not step out for balance for 30 sec. This may sound ridiculous, but when I started PT, I couldn't stand with my feet together with my eyes open. My inner ear nerves that control balance are also improving.

- I no longer walk with a cane. I have an awesome foot brace (TurboMed Orthotics) for long walks and any incline....but I can now walk cane-free.

Only time will tell if  there will be more improvement. It's up to me to modify as though there will never be improvement, with the hopes that there will.

Wishing you all a happy, healthy and prosperous year. Chase what brings you joy. Live to make great memories and spend time with people who make you smile. Be grateful for what you have, but fight for what you want. Not trying to be soap-boxy, just all my revelations of the 2015 calendar year.

Life is very very short. If you get to spend a second of that time healthy, then its up to you to be happy.