Friday, February 10, 2017

Day ~445: The 18 month update!!

It is hard to believe I have been back to work for 13 months. Recovery has lasted the full 18 months and in my opinion it continues.

My oncologist officially released me from her care in January 2017. She is so happy I did this, I was her first autoimmune patient that had a bone marrow treatment. She has been watching bone marrow transplants saved the lives of cancer patients for over a decade.

My neurologist, was never told about my decision to do this treatment, until six months after I did it. Just had my 17 month check up with him. He is blown away and in his own words: "is convinced that the treatment works".





Been cane free for a while now, can't say I miss that life. I owe so much gratitude to my physical therapist, occupational therapist and especially my personal trainer at the gym. Even when I was released from therapy my trainer really helped me work on balance, gait training, increasing my strength and mostly increasing my confidence in myself. Erik! I know you're reading this. Thank you.



It's been nice to get back to work and use my brain in a creative and useful way. Things are crazy busy as usual, but it beats sitting at home thinking about limitations and what I wish I could be doing.

There is a lot of credit due to my tribe. Without my friends and family, who have stood by my side and been the best support system on planet Earth, I don't know that I would have recovered so well.



My beau Chad has also been there from the beginning: diagnosis day. He never wavered, never showed stress, and never had any doubts that I would get better. But even if I hadn't improved; I know he would still be by my side.

The stomach issues that kept sending me to the ER (GERD attacks) seem to have finally subsided. I did catch what I thought was a cold back in December, and it turned out to be walking pneumonia. That took several weeks to recover from and was not fun at all. I do not recommend catching it- lol.

I now enjoy long hikes with my beau, we have some great reservoirs in the area that we get to spend a few hours exploring. Getting lots of friend time at the gym between steam rooms and spin classes.

While I am not 100%, I am also accepting of the fact that I may never be. But I'm 90% better than I was when I had a cane, infusions every two weeks, and fatigue that literally had me printing disability paperwork.



I continue to be an administrator for several support groups on Facebook and elsewhere. Paying it forward is something that I enjoy because I am so grateful to the mentors that I had through the process.

My favorite non-transplant group is my GBS/CIDP exercisers group. We encourage them with coping skills, motivate them to keep moving and building their strength, and help connect them with doctors that specialize in these diseases. This group brings a lot of joy to my heart, laughter to my soul.

My gratitude is through the roof. I count my blessings and wanted to thank all of you for your love and support and being the amazing people that I choose to have in my life.




Steph


4 comments:

  1. You have come so far in your journey Steph.

    It's been an amazing journey that you've taken us all on - the nervousness about reaching the decision to have the stem cell treatment; the reality of participating in ground breaking research with CIDP and its treatment regime; the ups and downs of the treatment and your recovery - look at where you are today beautiful girl - streets ahead from where this all started

    So very proud of you for your courage and so thankful you have come through the treatment and have reached your achievements to date. I know you won't stop achieving either. There is so much more ahead for you. The sky is the limit - the light at the end of a very dark tunnel is shining brighter for you.

    Thank you for continuing to share your accomplishments after HSCT with us. You are the beacon of light other patients with CIDP can hope to achieve. Anything is possible when you put your mind to it.

    Congratulations on your 445th day post transplant and here's to a lifetime more of setting your goals and blowing them out of the water.

    You've got this beautiful girl. Reach for those stars.

    Much love, as always

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  2. You are so rad in so many ways! I'm so glad you have health, happiness, love and laughter filling your life. 😘

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  3. Steph,
    Not only are you an inspiration to the CIDP community, but also to me, your HSCT veteran "roomie"! I'm so proud to have met you and watched your journey back to work - rollercoaster and all! I am at 18 months and still can't even imagine being back in the Corporate world already!!! Love you girl and so glad to read such a wonderful update ♥️

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  4. Congratulations my friend on a journey of a lifetime. You'll have many journeys, but I am so lucky to have had you share this one. This journey gives hope to many of us who are contemplating our own special "journeys". It has been a great joy watching you challenge yourself and enjoy your successes and figure out ways to deal with the challenges. I am so glad we are friends. I wish I could have been there for you more physically, but the body just wasn't up to it on many days. I know you understand. Can't believe how many days its been already! Congratulations and am looking forward to seeing you soon!

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