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 : )

IMG_0125

 

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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17 Comments on “July 9th – been too long since my last blog – Day 25”

  1. Gro Larsen says:

    He he, Nancy in Norwegian it s called knekkebrød. 😉 Glad you liked it! 😉

    Like

  2. Barbara Gewirtz says:

    Those crackers look like they might be similar to GG Bran Crispbreads.
    http://www.brancrispbread.com/#

    Like

  3. msedita22 says:

    Always honest, who could ask for more.
    Glad to hear you are doing better and it is great to hear that the wonderful Anastasia and Dr F not only have this under control but are as compassionate as they are. Wonderful!!
    Looking forward to the next post. Rest and take it easy….

    Like

  4. Brendan Friel says:

    Wonderful post moya Sistrah!! Happy to have spent some time with you before ISO, Nancy! You are a beautiful person, stay strong in there! (seems by that update, you are doing just that!). You got this! You will be out of ISO just before I go in…maybe…:) I know you’re a dentist and all, but no flossing in there..;)

    Like

    • As a dentist with great gums – shameless plug for daily flossing… got special permission from Dr. Fedorenko for a few extras to use that I brought from home just in case. But, no flossing for sure!
      Hope to see you when I’m out of iso and before you go in.
      Hey, since you’ll be held captive in your room…what a great day to send me some of my favorite fishing photos and you and your dad touring….with a few hand held props!!!
      Such a demanding moya Sistrah : )

      Like

  5. Joan Rhoades says:

    Hi Nancy…No disease can steal your spirit and your spirit seems to be in GREAT shape! Looking forward, optimistic, strong and having faith and of course SMILING!!!…and you know the ups and downs and are generally up for the challenge…I know you get tired and probably frustrated and yet you keep on keeping on…you are truly an inspiration to so many. keep up your good work and determination and soon you’ll be home with your loving family and friends. No need to take on any stress…your focus is YOU and your HEALING! LOVE LOVE LOVE you and I really hope to see you in August…xoxo Joan

    Like

  6. Sheryl Depp says:

    You are so brave to be so far away from home. I wish you the very best in your recovery and think of you all the time. Sending positive vibes your way!

    Like

    • Thanks, Sheryl! I do miss my family and friends. First July 4th not in Bethany in 20 years and first time EVER that I am not taking care of my weekly renters. It’s our only source of income, so I always want them to know I’m local if they need anything.
      Since, this treatment was not available to me in the US, I am actually thrilled be here in Moscow to improve the quality of my life! I appreciate all your positive vibes so much!!! ❤

      Like

  7. Eddie Nash says:

    Your post is a ray of sunshine for those that follow!

    Like

    • So glad to hear, Eddie. It’s so funny that so many people told me about my howling typo with an extra zero or two, but NO ONE mentioned that I spelled “desparate” wrong for so long. Just noticed it yesterday : )

      Like

  8. Leslie says:

    So good to hear from you. You are an incredible woman surrounded by wonderful people in Russia and the USA who love and care for you. Yes, the road will be long and hard to get to where you want to be. But think of it as all down hill (in the good sense). You have been climbing a huge mountain for years. It got tougher every day. Then you went to Russia and finally hit the summit. Now, Nancy, you’re headed back down that mountain. It will get easier day by day and eventually you will be on that flat ground again and back to enjoying an easier life. I hope the journey down continues to be pain free.

    Liked by 1 person

    • Leslie, You have been a constant support of love, positive energy and encouragement for me. I really appreciate your continued inspiration and your thoughtful donations as well. xoxoxox

      Like

  9. brookeslick says:

    What a lovely post, Nancy. I can tell you’ve come under the enchanted spell of Pirogov. Life-changing, really. 🙂

    Like

    • Thanks so much, Brooke. It is a truly magical place like I’ve never experienced before. Everyone knows I’ll be missing them on their day off, so we always discuss when they’ll be back. There is so much love and nurturing from the staff. Questions about a smooth transition back to the ”normal’ world are bouncing around in my head. Will talk tomorrow if you have time : )

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      • brookeslick says:

        Any time, Nancy. You know where I am. I can honestly say I’m still getting used to living without any fear of the future. You think it would be easier than it is. But, living with MS reprograms your thought processes to be in fear of what you might wake up to the next day. Living without that fear is such a gift. Now, you will get to live with that gift as well.

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