It has been now 18 months since my HSCT at the Chicago with Dr. Burt. We shot this short video from our road trip to share and talk about current happenings and just reiterate some thoughts and to answer some question too.
As always – please do not hesitate to send us your questions and comments. And even concerns, as you might have some, about HSCT and whole MS situation.
Thank you very much for watching, for talking to us and for following my journey.
The flu has passed, really felt like Black Plague! Had fever for 6 days, walking was pretty much out of the question, see post previous to this, all the old symptoms were out to play. So! Once the fever dropped, after 6 days, I was able to recover. So here I am, I even skipped for you in the video. Life is good again!
Sergei and I wish everyone a healthy and Happy New Year! May your all dreams come true! Wishing you all never ending love, to be at peace and creativity to flow like a river! Your families to be healthy and happy!
As for the update: I am doing great guys! For four and half weeks been at the gym five days a week lifting weights. I am stronger and happier (loosing weight helps too). I am starting my new job on January 3rd, very excited, Tier 1 Automotive company, woot! Life is good and we should not waist a moment. I am forever thankful for Dr. Burt and his team.
If anyone needs to talk about HSCT, please do not hesitate to reach out to me.
Yesterday we saw Dr. Burt for one year follow up of HSCT. Drum Roll please! I am still in remission! No new activity, which means no new lesions or active lesions 🙂 Unlike my 6 month follow up, where my lesions shrunken, this time there are no changes, just as I was. This is my first year after a decade, more then a decade where I had no active lesions, or any new lesions. This is amazing and I am the luckiest!!!
We been holding onto updates for whole summer, one reason or another, but it is September!
So lets start autumn with talking about how things are and also do some heavy and may be a bit non-traditional thoughts about HSCT as a cure for MS.
We will be in Chicago October 25-28 (most of the day on 28th), we would love to see everyone who is going to be there, also please see link if you would like to participate in this Faces of Auto-Immune Diseases .
If you see my post for the first time and would like to see my journey from the beginning, you can find it here Journey to there and back.
While we were in Chicago, we met up with amazing people in different phases of HSCT process. Some of them are in the hospital, either had a transplant or about to. Others were waiting for evaluation, few gals were awaiting insurance approval.
It is amazing to meet everyone and feel such hope, full of dreams and possabilities. It was truly an honor to meet each and everyone of you.
Sergei and Lana
Happy Birthday to all the peeps!
Carina, came in for her 6 month follow-up
Bobbie Jean you stole my heart, what a beautiful soul you have!
Lee Lee, saucy and spicy lady! At the time of our visit, awaiting transplant, you go sister!
Jackie, sweet, kind and beautiful woman, had her transplant the next day of our visit. Happy Birthday gorgeous!
Jay! An inspiring young man, so much fire! Just finished his mobilization.
Tonya, beautiful young woman, has a whole life ahead of her to be free of the monster! Just finished her mobilization.
From left to right, Ellie, Maureen, Daniela, your truly, Bonnie, an amazing group of women, you made my heart so full. I cannot wait to meet all of you when I come back for a yearly check up!
With Boys! Daniela’s hubby, what a sweetie!
Jordan, sweet and smart young woman, had her transplant that day!
Realized today that I have not updated my blog.
Met with Dr. Burt and Dr. Balabanov last week on Wednesday.
I stressed my self out to the point where I had ice pick headaches, pain in my ear, just drove myself nuts. It was truly scary, did it work, did I do this for nothing, what if I still have active lesions and on and on. Sergei was thinking same thing, making plans for what if.
So my appointment day. I do not even remember what Dr. Burt said or asked. I just remember him sitting down and saying no new activity and old lesions shrinking. That moment I collapsed into Sergei’s arms and tears poured out. So much relief, bricks fell off my shoulders. HSCT, stem cell transplant worked, sweet words of remission. Since my diagnoses I have not been in remission, it was a relapse after a relapse. I do not have enough sufficient words to express accurately how it feels. It is surreal, I can dream of things I use to dream, I have a chance at life without limitation. Feels unreal.
Met with Dr. Balabanov next, he confirmed what Dr. Burt said, he was elated with how well I am doing. My EDSS score dropped down so significantly.
With all of those news, I do have to see a bone doctor and get an MRI on my hips. Steroids and chemo might have did them in, hip replacement is one of the options if it will be confirmed. However, I am not looking to do it until I cannot move!
The news of remission cannot darken anything, I can live with bone pain, I am not progressing, I am regressing 🙂
So news are fantastic!
Thank you to everyone for your support, all the kind words,to everyone who lifted my spirits and showed me so much love, Thank you!!!
We are going to be in Chicago on Monday the 21st of this month until Wednesday for 5 months follow up with Dr. Burt. A month ago new symptoms started to come out, feels like a relapse, but who knows! So, got a call from Dr. Burt and he asked me to come in. So here I come! While we are there would love to meet anyone and everyone who is there in Chicago. Please, see the video and leave a comment if you are available or would like us to come by.
So…4 months post HSCT. I think for a lot of people, can’t speak for everyone, issues do come out after month 3. I happen to be one of them. Perhaps it is due to steroids wearing off or chemo, I don’t know, it is not my field of expertise but it does happen. My balance has started to shift again, the gate of a puppy or a baby, looks funny. Legs feel like led, by the end of the day I truly do not want to move. The crazy fatigue is back into it’s full force, some days it is truly worse then others. UTI is back, woot! I suffered from incurable UTI prior to transplant, and seriously it was incurable, I could take huge dosages of antibiotics for it to return in two weeks time at best. So here we go again!
I am going back to Chicago this month to see Dr. Burt. He called me out of the blue asking me questions and wants to see me now, to evaluate the current situation, lets hope this is not a relapse, hope…
But hey, it’s life, it throws curve balls at you and I take it, one hit after another, sometimes I even come out stronger, and sometimes it takes me down, down on my knees, whipping, begging for it to stop. Bring it, I take it, I can do it all, right? Yeah…sometimes I can. We are all allowed to be weak once in a while, otherwise, we fight, we move forward and we make lemonade out of lemons.
This post is for the ladies, and gentleman those of you that might be effected as well by multiple sclerosis.
As many of us know the struggle is real and has effected our sex lives. Does it get better, do you get the feeling back?
For me it did, oh it is so nice to have the feeling again 😀 I hope it is the case for many.
Menopause is a nasty bitch and got to ride that wave.
Here is a short video for you all, sexpost HSCT and I would love to hear your story. Please, leave a comment!