Good news! It worked! Three weeks in the hospital, being bombarded with chemotherapeutic drugs, getting blood transfusions and losing all my hair was worth it! I’m no longer on any medications for my MS and it’s been a year and half and my MRI shows no new lesions.
Okay now for the bad news…
I can’t walk! My walking is worse than what it was before the transplant. Why? I don’t know! Could it be all the chemo , maybe it’s an effect from the 24 vaccines I received post transplant or maybe it’s because of COVID! I really don’t know! It’s quite annoying. Here is me scooting down the stairs because I have no energy to walk down.
I’m still wearing diapers because I keep having accidents. I’m just waiting and hoping things get better! But in the meantime, I am working my butt off! I’m going to physical therapy 4 times a week. And I’ve decided that I’m not going to wait around for things to get better. This summer I went on a hot air balloon in Cappadocia, Turkey. It was AMAZING 🤩 Getting on and off was an adventure (basically my husband and brother in law had to carry me!) but I did it. 🥳
I also went on a fun Disney cruise with my family! Now you might wonder how a person who can’t walk or hold her urine does these things… hehe 😜 well basically it takes a lot of support and also not caring what other people think
So that’s my update!
Take away point:
Am I glad I did HSCT? Yes!👏 It was the best decision for me, my MS was worsening and it needed to be stopped
Would I recommend it to everyone? NO! Think twice before you go through this. If things aren’t bad, don’t rock the boat
Hang in there fighter….. say “All is well”… and have fun…. I am sure things are going to be better, soon….
Thanks Anil! All is well! 😀😀😀
You are a warrior. Prays for healing are being offered up for you.
Thanks so much Kathy!!
So very glad I have read this it gives me comfort to know that there is someone in the exact same position. (Transplant March 2022) just as you said I will not give up and I’m working hard every day exercising to get my legs back! but as you know time is always ticking so I have booked a holiday in December 🙂 you are right without My husband this would be a much harder journey but I can tell you as well Are determined to keep fighting
Aww yea!! I’m glad you are booking a holiday in December! We got this 😋
Great to see your update . Am in the same boat and I totally relate to you. Sometimes when people update that they could cycle miles or run , I wonder what did I do to even not been able to walk , but patience and time is the key:) take care
Thanks so much!! We both will recover soon! 😀
Things will get better soon..
I really hope so, Unni!!
Veena, I am very happy for you for the good news part. You are a very courageous and determined person and a role model for how to fight back against a very challenging disease.
Thanks so much Dr. Feinberg!!
Congrats on enjoying the summer! So happy you figured out that MS does not take your joy!
Haha I won’t let it! Thanks so much!
Dear Veena, you are an inspiration to me. You are doing all the right things and it will pay off soon. MS already said goodbye to you because of the courageous step you took. Enjoy life as you are doing already. As you mentioned we can not think of tomorrow and stop from what we can do today…I myself is trying to practice it. You are my hero!!! Kudos to you and your loving support team!!! Lots of love. aunty
Thanks so much Sreedevi aunty! You are a definite inspiration for me!