Day 365: One crazy (and wonderful) year

Aug 3rd was my 1 year post transplant birthday. I spent it in Chicago for my one year checkup and have been reflecting on my improvements since March 2015 when I came for evaluation.

I didn't start to see promising changes until 8.5 months post. At my 6 month, while some things had improved, I didnt feel they were that significant. Going back to work on month 5 was very hard. I was lucky to have had a very supportive management team that helped me ramp up my time in office and projects.















Flash forward to today. As I sat by a window last week waiting for Dr. Burt's nurse to call my name - I realized how far I have come: No wheelchair at airport, my cane is at home, no more IVIG infusions, down to ONE medication (that I should be off in a few months), no longer limping, walked over a mile to dinner last night, took 11.5k steps yesterday, more energy, more joy....

miles of myelin repairing

We (HSCT patients) all came in with different levels of disease or damage and we all heal at a different pace. Some (shout out Matt) build decks at month +5......some are starting to feel better at month +21. This is my path and I am ok with it. It can always be worse. And more than anything, I am grateful to be walking unassisted.





I still have challenges with: fatigue, fine motor skills in hands, numb hands and feet (I cannot operate a zipper without looking), occasional balance issue and strength. However the improvements outweigh the challenges.

this heart is overwhelmed with gratitude

Enough cannot be said about my support at home and abroad. As I may not post for a while I have to dedicate so much of my success to them.  I never used to be much of a crier, but I am emotional writing this.

My friends and family listened, never doubted my illness or ability. They offered to help when it was needed and to back off just the same. In the darkest of days they picked me up of the floor after a fall and subsequent breakdown. They walked the 0.25 mi with me until it became 1.0+ miles, took me to appointments, did test drives with me, brought me soup, lent me their ears, brought a smile and giggles.


They sent messages, cards, care packages (a giant flask and great books were in the mix), left voicemails and sent emails daily, weekly, monthly - from near or far just to let me know I was on their mind - while they were busy with newborns/ toddlers, ill family members, work, vacations, family events, deaths in the family or their own medical issues.



Current friendships grew deeper, new awesome friendships were born. They, to this day, are my biggest cheerleaders. I am blessed with the love from this group of amazing souls. They need not be named, because they know who they are.

I love you endlessly. My cup overfloweth. I hope to return the favor in any capacity some day.





Had a blast in Chicago meeting up with fellow patients. We visited inpatients at the hospital - it was Matt (+6mo), me (+1yr) and Kasia (+2yr). Kasia was one of my mentors and I tried to do the same for Matt; but in the end Matt inspired the hell out of me (he's the one who built a deck at +5 months). Below we are in order second to fourth and on the far left is a patient that was still inpatient. She was discharged the next day.

my view when I was inpatient

There was time with Bree - my hairstylist/friend who I have been with since the uber short cut a year ago, two weeks prior to the shave off. We as always had a blast and I got to bring goodies for the baby girl she is due to have this October.

baby bump  photo bomb

Kasia, her family and I caught the Wed night fireworks

A work colleague/friend of mine left this for me while I was in Chicago - she is now on maternity leave so I didn't even get to hug her and say thank you. She has been photographing my hair growth since month +5 when I got back to work. People donating headbands and bows etc. for me to wear and I "modeled" them for her a few days a week. Well she put them in a beautiful keepsake box. *Sniff!

Chicago will always have a special place in my heart and I will gladly contribute to their economy. Wouldn't mind a place here for the Spring/Fall- ya know, when I become a millionaire. Don't think I'm not working on it. Lake property is calling my name

In September I head to Texas for the CIDP/GBS Foundation summit where Dr. Burt will speak about the treatment. I am looking forward to meeting many members of some of the support groups I admin or attend online. Plus - nothing like spreading the word!

Added-bonus- there is a wedding in Chad's family that same weekend   - guess who is meeting the family...  :)


Here are some other pics of the visit:

I had no idea this was in Chicago - (hint;  Al Bundy)

Planetarium is a must - I'm a science nerd!

That is all for now folks! Thanks for following my journey.

Wishing you love, laughter and wellness!

Day +272: It's my 9 month birFday!!!

What a great few weeks its been. My beloved pooch turned 5 years old April 12th. My physical body turned 40 on April 18th. My immune system turned 9 months old today, May 3rd.

Duke has been enjoying day camp, a couple days a week. They take such great shots of him. He cant wait to get out of the car when we arrive, and passes out in the car on the way home.

Employment
It feels good to use the brain again! I continue to plug along at work. I really like my job and my new projects. They continue to be understanding about my work restrictions. I repay the favor by being my typical workhorse self.  I've been "promoted" by the docs to three days a week in the office and two days at home. It's been great reconnecting with my colleagues.

We had our annual Senior Leadership meeting and I got to catch up with colleagues that came from across the country. I also got to enjoy this beautiful view. Not complaining,

Alcatraz, Coit Tower and the bay

We are having some fun at the office taking silly pictures of me with headbands and watching my hair grow. Its coming in, although it feels slow....but length is there! I've come a long way - baldy picture alert!

twins much? the baby bro
week of Aug 15

May 

April

My AZ girl - Angie (March)

Fitness
I started attending a spin class once a week. I am going to try a second day this week. I attempted a
half spin/half weight class and strained a shoulder muscle, so that may need to wait. My average step count on my fit bit is slowing rising, which shows that my stamina is increasing. I still attempt to swim, but the pool has been a bit crowded for my taste. 5 people and 4 lanes is too much for me.

I am convinced that my homeopathic treatment (MacaRoot) is to thank. Its easier to be motivated to workout hard when you aren't having a hot flashes and sweat fits throughout the day. This is also helping me sleep through the night FINALLY. I had forgotten what it felt like to be well rested.

Celebrations
My girlfriends threw me a dinner party for my birthday. It was quite fun! A great way to celebrate and be thankful for another year enjoying life and laughing my way through it. Thanks to my friends for planning and spending the evening with me. I had a lot of laughs!

40 flowers from my roomie

Friends for a LONG time

candy cigarette

mi amor

Birthday Trip
The beau took me to Cambria, CA to celebrate the big four-oh. It is a coastal town (known for its proximity to Hearst Castle). We ended up there last minute after weather reports showed that Mendocino was rained in. What an incredibly beautiful area. We met a  local artist: Rick of Rick Gallery has some great work, the owner of Black Hand winery (we got some bottles), and we visited the 300 yr old Oak in the open space that the city acquired. We even attended a wildflower exhibit, where volunteers collected hundreds of local wild flowers and plants (some poisonous). We learned where they grow and if they are edible or medicinal.

Morro Bay

Healing
PT/OT are reduced to once a month. I am beginning a PT swim program that has a treadmill in a pool. I am still having issues with my gait, so hopefully gravity free walking will help me lose the limp.

Still have the upper GI issue unfortunately. It has been four months since my last attack, so my hope was that it was settled. But the weekend brought another attack, so we just wait for the day it never returns. The doctors don't have many options. I keep my medication on me 24/7 so I have it when I need it.

Otherwise all healing is slow but steady. I'm pleased. Still impatient, but pleased!


Follow Ups
Chicago called and scheduled my one year follow up this fall. Looking forward to the report.

Then I'm off to the International GBS/CIDP Symposium to hear Dr. Burt spread the word!!! Proud of our foundation for recognizing a non-pill form alternative for auto immune issues. Take that Bayer!

He just finished speaking at the Vatican spreading the same word. Its a BIG deal.

Lots to be grateful for!!!!

Day 229: Updates from the Windy City

Sorry I am behind:

I can remember following other people's blogs, and being so bummed when they didn't send an update regularly.  And I remember them talking about getting so busy with life once they felt better.  Now I know exactly what they mean.  Sorry, I've been busy with life.  It's pretty awesome to be able to say that.

Chicago bound:
March 3rd was my 7-month immune system birthday.

I was back in Chicago for my (late) 6 month follow up the first week of March (about day +211).
Got some great shots from the plane....and an idea of how chilly it is in the sky.

Forgive the sideways photos- I have resaved them twice right side up,
but Blogger is having none of it~



approaching Chicago @ nigt



-54F? Brrrr!



Lake Tahoe from 39k feet

 

 

 

 

 

 

 

 

Its the same awesome city it was last summer, only with ice on the ground

Visiting with the docs:
I met with Dr Burt & Paula first, who had this to say:

"You are doing better than you think you are and what you describe. Honestly you are in the 'best case' side of things. Keep it up, we hope to see even more improvement in August at your one year"

Dr. Allen did the EMG Amd Nerve Conduction tests. Heres the thing...they hurt when I was at peak numbness.....so now it really freakin hurts.

I am still waiting for Dr. Allen's formal write up of results, but he said that at rough glance he saw "some nerve improvement and some nerve worsening" so we will see what that even means.

My CA Neuro:
Before I went to Chicago, I met with my Neuro in CA. He confirmed that every 3 months since transplant he has seen "tiny improvements", but informed me that since nerves heal in tiny increments, I am right on track. He also did the vibration and pin prick tests. Long story short: extra sensation brewing. (Ouch!!) - this is a good thing.

Beautification:
While in Chicago I went to see my hair dresser Bree. She used to live in the BayArea and later moved to Chicago. I met here during mobilization when I cut my hair short in preparation for it to fall out. I had to go back. We had some fun shaping my fro, pitting in very subtle clolor and playing around with some punk rock styles.

I have yet to repeat this perfection of "punkrock" but I keep trying.


Advice for future applicants:
For those of you planning to come to Chicago for transplants I cannot recommend this salon enough. Look up HAIR LOFT on West Huron Street. Make your appointment ...you won't regret it. Bree Spaethe is the best....but I am sure everyone is great.

A good laugh:
My Chicago funny- I had reserved transportation to take be back to the airport and in the email confirmation my name was spelled like so:

Status Check:
Apr 4th is my 8 month birthday. I am starting to have more good days than bad. Once Chicago lifted the pool restriction, I was at the gym swimming. It wipes me out with just 30 minutes, but I swear it makes a difference.

Apr. 4th will be just about 3 months since I have been back to work. I think the "brain joy" from working aids in healing too. My wonderful manager announced her retirement (cancels out brain joy) - so there is mild stress about the change in regime. She has been so kind and accommodating, but I am truly happy for her. Good souls like her are hard to come by so she deserves all the R&R she wants. For the first time in my career I am interested in leadership. Not management, but true leadership; thanks to mentors like her,

Duke has been to "camp" a few days a week so he can stay occupied. This who experience was hard on him. But camp keeps him active and socialized until I can actual take him on 2 mile hikes again



.

morning bike ride

hunting squirrels

lining up for play yard entrance

Who knows what I will be reporting in August, but I am hoping its a little something like this: "sorry this blog is late, went for a jog with the dog and forgot". That is all any of us hopes for with HSCT. A little bit of our life back without constantly wondering how much more attack our bodies will experience in the next year. Its clear that progression has stopped...now we wait to see how much my body wants to heal

My 40th birthday is approaching (April) and I was thinking about how grateful I am to have a 40th. If I were still healthy I'd likely be complaining about how old I am getting. But my new motto is "bring it universe: you have NO idea who you are messing with".

Until next time.........

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.

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.

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........

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.

EPIPHANY
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.

WHAT THE DOCS SAY
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.


WORK
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........


HOW'S STEPH
- 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.


2016
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.