July 9th – been too long since my last blog – Day 25

*** not edited, just written***
I had an interesting bunch of days here in Moscow.  So absolutely delighted to meet everyone from all over the world who are here to improve the quality of their lives.  I’ve never met anyone with Primary Progressive Multiple Sclerosis in person EVER.  There are 4 of us here.  One I have actually not met.  I was already in isolation when he arrived;  New friends from Australia, New Zealand, Norway, Canada, and the US is represented by MD/DE  me : ), Indiana, Georgia, Texas and Montana.  All different stories and backgrounds to  learn about which is so interesting for me, who  does not get ‘out’ much at home.  We have a variety of different autoimmune diseases, one patient did find out she had a 2nd autoimmune disease until after complete testing.   We are a variety of ages, maybe 34  to 64 years old,  many varieties of disabilities and pain levels that we  all started out with and have had for various lengths of time.  100% of us know that this is where we need to be to improve the quality of our lives.  Many more able bodied patients have been able to go sightseeing as they go through their testing and ever afterwards for a bit.  Unfortunately, my rollator and I have only gone outside on the hospital grounds to seek some sunshine.  Once, a dear friend, Ali rolled me all over the hospital grounds in one of the hospital wheelchairs.  I am grateful for that experience!!!

I can’t stress enough that all I’ve read and learned  about HSCT through the various facebook groups, phone conversations with previous patients and Dr. Fedorenko have been invaluable.  There is a support system in place in case anyone who had HSCT anywhere in the world can reach out and ask questions.  Dr. Fedorenko is also available by phone or email.  Anastasia, his liaison is the best person for the job. She gives so much extra time to also works tirelessly to ensure everyone is well cared for on all levels.

There is a language barrier for sure and I’ve been learning more Russian daily,  Recently, if there has been anything that’s not extremely simple to communicate, I’ve used google translate.

Anastasia and all the nurses can contact Dr. Fedorenko at any time day or night.  He also comes in on the weekends to check on all his patients.  Anastasia goes to the airport with a driver on any day a new patient arrives, so she can greet them personally.  She does this on the weekends too!!!

Any fears or concerns that family or friends brought to my attention were not warranted at all.  I know everyone had my best intentions at heart, but it did cause me unnecessary stress.  I wanted to arrive as strong as possible, but instead my stress level caused my disability to further decline.  I did extensive research, I was not ‘catfished’ or scammed in any way.  I’m not the smartest person in the world. But as a retired/disabled dentist, I was perfectly capable of making an informed decision.

I’ve been extremely fortunate during my treatment.  Besides some intense lumbar problems that were extremely painful during my MRI testing, I had absolutely no problems.  I ‘d done so well with all the other testing, I asked if he MRI could be done the same day.  No idea if I would have had the same problem the following day. For anyone not familiar with lengthy MRI’s, you are placed on your back, call button in hand and mechanically rolled into a long machine. Some are open, some are closed.  This one was closed. It can be noisy and I was given headphones. You still hear strange noises, but the sound is diminished.  So, I needed a brain, cervical and thoracic MRI.  Midway through the procedure, ALL my extremities got numb, burning and uncomfortable.  But, I wasn’t done yet.  I was rolled out and given a routine injection of gadolinium to check for enhancements and rolled back in for the second half of the MRI.  I just kept breathing in and out and knew I was halfway done. I finished the MRI and was glad I did not press the button for the tech to stop.  I was in miserable pain and got freezing cold.  After being wheeled back to my room, I was really glad Marian, my sister and Robert, my brother-in-law were there.  They asked for an extra blanket. Dr. Fedorenko was called and he agreed I could take my own 800 mg ibuprofen (advil) and an ice pack for my lower back was delivered quickly. I fell asleep and was better in a few hours.

That was my total discomfort during the entire chemo/HSCT procedure.   So many people experience more severe side effects that can be painful and exhausting.  From what I heard, the sooner you ring the nurse that you are in any kind of distress, it will be handled ASAP.  I know everyone will not fair as well as I did during  treatment.  I WISH my lack of difficulties would mean my recovery will go smoothly.  I know for a fact that there will be extreme fatigue, ups and downs with symptoms and patience, good food, good mood and family support are essential.  If/when  I have a terrible day, week, month etc, it’s all part of the roller coaster recovery that I’ve learned is normal and appropriate.  I will, in time, have more good days than bad days and that is my goal.  Please be as patient as I will be and be as encouraging as possible! I have real hope….not to be an able bodied person, but to be able to finally strengthen muscles that will actually respond to hard work and dedication : )

I know this is not my typical blog.  It’s too wordy and not enough of the photos that I love to add!
Here goes some of the highlights before my isolation started.

I know this must not look too exciting to most of you, but I eat extremely healthy at home.  This was a tasty, flatbread/cracker from Gro Larson.  Full of fiber and love and she gave me more before I  entered isolation.
I don’t  even  remember what it’s called.  Thank you, Gro!!!  She also brought yummy treats for all of us : )

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This was taken on Friday July 4th, but after 5pm.  After 5, the easy door with the ramps is locked.  There is a convenient alternate exit, but there are a few stairs.  There is a railing which helps.  I’ve done this with Marian and Robert and after they left with other people nearby in case I needed help. This was the first time, I was alone and I felt ready.  I love my lightweight Euro Rollator, made by Drive Medical and comes with a basket for water, sunglasses, light jacket in case the sun goes down etc. The small  pouch was added on right before I left for lipgloss, tissues, reading glasses.  It’s perfect for little essentials.

Anyway, I locked both wheels and easily manage both myself and the rollator easily.  This time I was meeting Brendan who had been out with his dad.  The hardest part for me is pushing open the heavy door.

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I  met Brendan outside. He found a lovely sunny spot and we got to chat about our lives for a long time while we enjoyed the gardens, statues and beautiful sunshine.  And of course a selfie.  Brendan’s hands are much more stable than mine! I always appreciate his company, his insight and his wisdom too!!!

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