Moscow Journey-March 20, 2015

    Well, the saga continues.  Since posting last, I had my yearly physical and my doc noted that my WBC and platelets have declined since my last blood work.  He said he'd like for me to see a hematologist if the counts continue to decline.  I said, and doc concurred, that I'd like to go ahead and pursue that idea.  So the next week consisted of a visit to the hematologist, blood work in which 18 vials of blood were drawn, a visit to the pain specialist (again) in order to get a refill on my Baclofen, scheduling of a bone marrow biopsy, and scheduling of two MRIs.  Embedded in all of that I had two physical therapy visits which went well.  The hematologist said the blood work is to determine if I have any vitamin deficiencies, any viral infections, or autoimmune diseases.  She called me the next day to say a slight deficiency in B12 and folic acid levels was found. It is my prayer that nothing else will be found.  It is not uncommon for people who've had HSCT to develop a second autoimmune disease, so I'm praying that won't be found.

Moscow Journey June 17, 2015

    It has been almost 2 months since I wrote in the journal and much has happened. After running all the tests, the hematologist did not find anything except my platelet count is still low. We will monitor it and make sure that it maintains the level at which it now stands. I saw a pain specialist and in searching for ways to help me sleep more than four hours at night he had me try OxyContin which did not allow me to sleep at all  for several nights. I am now going to sleep with one Oxycodone and 25 mg of Benedril which allows me to sleep for four hours before being awakened with pain again. I then take another oxycodone which gives me another 3 to 3 1/2 hours of sleep. I am grateful to have something that will allow me to get adequate sleep. It is amazing how important sleep becomes when you cannot sleep. 

            As the date of June 23 nears, the date I left for Russia last year, I stop to assess where I am in my MS journey.  I have definitely lost ground in comparison to my mobility status before I left for Russia, but I am getting better weekly and hope to be back to my original health shortly and begin gaining ground-improving-soon.  I have ceased working with the physical therapist and have begun working with my personal trainer at the gym.  She and I have seen some improvements in my mobility in the last 6 to 8 weeks that I've worked with her.  I have recently begun driving which gives me a certain amount of independence. I have mastered taking  my rollator out of the car but need help putting into the car.  That gives me the independence to drive to the gym as long as I have someone help me put the rollator into the car.   I am now sorting, washing, drying, and folding clothes, and I usually cook at least one meal a day. Strange that I am grateful to resume housekeeping duties.

Moscow Journey Oct. 3, 2014

In  In another month, or less, I hope to report positive changes.

          I can't believe I've been home one month plus three days. My progress in terms of walking, which is my goal, has been delayed significantly because of bursitis in my hip due to a fall.  I should probably read my precious posts since I might be writing the exact same thing!  I have had a cortisone shot in my hip-all to no avail, taken five days of steroids, and have begun physical therapy.  The shot only helped for about twelve hours.  The oral steroids have helped, and I hope the benefit remains as I complete the prescription.

       I really like the physical therapist.  She pushes me just a little but not too much.  I've only seen her twice, and the first time I saw her I told her my goal is to walk comfortably with the cane again, not to compete in dance competitions!  I was surprised when she suggested that I bring my cane for the second visit.  Well, I did walk with the cane on the second visit although I was leaning on John's arm the whole time.

    I am optimistic about the eventual outcome of HSCT  and physical therapy.  Right now I am still recuperating from the whole procedure and am walking kind of wonky due to left hip pain.  As I get out of pain, I hope to regain my normal walk, even with a cane.  My stamina is not great, so that is something I need to work on.

Moscow Journery - March 24, 2016

March 24, 2016
   Man, I've been negligent about keeping up with this blog.  There have been so many improvements since December:   * walking with the cane more than the rollator
                    * dancing with John (not good enough for public viewing yet)
                    *  having the ability to bend over and wipe up spills on the floor
                    * comfortably loading and unloading the dishwasher
                    * waking into Wal-Mart and shopping using a buggy, not an electrical cart (first time today)
                    * raking leaves and pine straw in the yard (not a huge spot, but still.....)
   At the gym I've begun to use the elliptical, which was something I did before HSCT.  The most I've done so far is 8 1/2 minutes, but I have to start somewhere, right?   I do that and then work out with Erin, my trainer, for a half hour or a full hour.  My stamina has greatly improved.
    It is such a relief so have NO pain of any kind and to be able to sleep 8 hours without getting up to use a pain reliever.  I am making it a point to share knowledge of HSCT anywhere I have a chance.  In April I will speak to the Tallahassee chapter of the MS Society about my Russian Adventure.  I've actually thought about notifying the newspaper or television station to come observe and maybe get the word out.  It is amazing how few people actually know that there is a procedure that will halt MS and likely heal damage.  It seems unethical that neurologists aren't informing their patients about this procedure.
    I hope to post next time with more and more good news about my progress.

Moscow Journey -December 14, 2015

     This is what happens when you began to get better. I forget to post in my blog.  So now I just been almost 2 months since I last posted and I continue to improve.  My last post was about vacuuming, mopping, and, ironically, that is my post today.  On the 11th, I again vacuumed and mopped.  That sounds very minimal, but our dining room is about 20 feet long so it takes a lot of energy, and NO it hasn't been two months since I mopped!  I am remarking because I noted that I was extremely sore when I resumed cleaning but this time I had no after-effects.  Also, pre HSCT I would get fatigued if I made a bed but now have the stamina to clean house in 30 minute blocks.  I see improvements weekly and will try to remember to post them.  We went to a small holiday party last night, and I remembered that I was in a wheelchair (remember the fractured pelvic bone?) when we went last year and this year I walked in with a cane and John's arm.  Now, that's progress.

Now journey October 28, 2015

    Who knew Mopping and vacuuming could make your butt hurt? On Friday, the 23rd, I undertook doing more housework that I have done in four years!  The lady who cleans for me is taking leave which means that I must resume cleaning house!  For the last four years I have not been in physical shape to do much around the house.  Since having HSCT in Russia, I am regaining some lost abilities. That means I am using muscles I had forgotten I had!  Some of you women are thinking I am crazy to regain the ability to clean house;-). Yes, it has made me sore: buttocks, waist, abs.  And to think I am paying a personal trainer to MAKE me work those muscles!  I am grateful and celebrate the ability to do those things which I had been unable to do, but I think I'll take it slower from now on.  One room at A time!  John says he thinks I am now in better shape than I was before going to Russia.  Now, he doesn't mean I have a better shape;  he is referring to my physical capabilities😉

  I am grateful for improvements.  Remember, I went to Russia to stop the progression of this monster, MS, and that has happened and I am improving.

Moscow journey July 27, 2015

   Since my last post, I have been able to put the rollator in the car and take it out which means that I can go places by myself since I am now driving. I see small improvements in my physical ability, but I do not think that I am where I was before I left for Russia. I notice slight changes in my ability to maintain my balance while I perform certain tasks around the house for which I am very grateful.  Unfortunately, I have regained 10 of the 31 pounds that I lost. My plan is to take those 10 pounds off again.  Sometimes, I make smaller advances and later realize that I have done something without the fatigue that I used to have. Prior to going to Russia, if I made up a bed it took me 15 to 20 minutes, and then I had to lie down and rest afterwards. Last week I took a shower, washed my hair, Got out of the shower, and dressed and dried my hair. I was not tired when I finished. That is another small step for most of the world but a giant step for Judi.