Moscow Journey, August 2, 2014

So, am I allowed to skip so many days?  oh, that's right!  It is my blog!

  We arrived home about midnight on July 29, and it felt so good to climb into OUR bed.  Our trip home couldn't have been better.  Dr. F certainly knows how to care for his patients.  His driver, Vladimir, took us to the airport, set me up with the wheelchair transportor who then helped us get our boarding passes, escorted us to a special lounge, and then escorted us to our seats on the plane.  We were fed three meals between 2:30 pm and midnight. I am afraid to weigh!  We were well taken care of.  We were also served breakfast before landing in ATL.  We had a very brief layover and very courteous assistance before boarding the flight to Tallahassee. We were fortunate enough to have wonderful neighbors, Bobby and Sue Jackson, and friends, Jim and Lesa Cannon, who met us as we came down the ramp.  What a blessing!  Bobby and Sue got us home quickly, for which we were very grateful.  We piled into bed and I am not even sure how long we slept.  Since we arrived home five days ago, I have slept more than I can remember.  I can barely stay awake more than four hours, but John reminds me I've never been through chemo and stem cell transplant so I just need to give in to it. Never have I been so willing to take someone's advice to be lazy!

I am still so grateful to have had the opportunity to take advantage of this treatment.   I still don't know what God has planned for me, but I will listen to him and hope that He will use me in some way to help others

Moscow Journey, August 18, 2014

     There seems to be little news in my life.  I am not going out in public much yet because of my fear of coming in contact with anything causing infections.  I've only held my eight month old grandson once in the three weeks I've been home because he has a cold he can't get rid of.  I haven't seen our two Mississippi grandchildren yet.  It's so hard to know how cautious to be, but one former HSCTer said one can end up in the hospital with what seems to be a fairly mild infection.  I've spent enough of 2014 in the hospital!

     I have had pain that I attributed to inactivity and thought was muscle pain.  Then I read about bone pain following HSCT. I am still in conflict about starting physical therapy and general exercise.  I started doing stretching and I do feel the benefits.  At least I am a little more flexible.  This is an ongoing process, and one on which NO one nearby can give authoritative advice!

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.