Monday, March 21, 2016

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.........




6 comments:

  1. CIDP has certainly met its match Bethany Spamapeoos. I love you no matter what your name is. :)

    You have come through so much...........CIDP will not claim victory. πŸ’•πŸ’•πŸ’•

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  2. A wonderful report. You are one brave woman. I am so proud of you. Even in healing, it takes strength, which you muster. Bethany Spamapeoos sounds like a stripper name. I am so gonna tease you with it for years to come. I love you down to your stem cells which will not be turning 40. πŸ˜ƒ

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  3. I will be celebrating with you from Texas. I am so happy for you and the progress that you are making. Your body and mind are tough, just like Mr. Duke. :) Thanks for the wonderful update... I will be toasting to you on April 4th! xoxoxo - Melissa

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  4. So proud of you and so happy to hear of the progress you are making!!! Awesome. Love you!

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  5. Yes, indeed, the Universe has absolutely NO idea who it's messing with!!! You are such a incredible inspiration, my God-child! I adore you for the beauty of your soul, your determination, your stamina, and your kindness (when you want to inspire others to action). YES! YOU ARE A LEADER!!!! A natural one: born with the gift.
    PS: tell you Dad the spelling of your last name on the ticket: he will get a kick out of it (it's strictly a...man's thing! lol)


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  6. Greetings. I included your blog and or video in my website. It's a list of first-person accounts of people who are battling GPS and its variants.

    http://whatyourdonotknowbecauseyouarenotme.blogspot.com/2015/12/what-you-do-not-know-if-you-do-not-have.html

    ReplyDelete