Tuesday, August 9, 2016

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!


  1. Wishing YOU love, laughter and wellness. It's been one hell of a journey.

    Love you to the moon and back my daughter from another mother.

  2. Its been a hell of a year but you have been my inspiration. If you can go through what you've been through, so can I. Love you Steph, always have, always will. Its been what 16 years? 10 years at Merchant, 5 or 6 years here in Wholesale. I will always carry you in my heart in that little place for my special people! You know, lately its getting pretty empty too! Lol. Keep on, keeping on my friend, I hear there's some pho calling us!!

  3. I love you sooooo much. I am so grateful you made the scary steps to live a healthier happier life. You are one of the strongest ninjas I know. xoxo

  4. Great update and fantastic progress made. I knew you had this because I know you and your unending determination. I understand the work/healing was hard and it challenged you to your core. You are a true hero and an inspiration to others. Love you toots!

  5. Great update and fantastic progress made. I knew you had this because I know you and your unending determination. I understand the work/healing was hard and it challenged you to your core. You are a true hero and an inspiration to others. Love you toots!