Moscow Journey May 9, 2016

     Today makes 22 months since my stem cell infusion, and I continue to see improvements.  I use the cane exclusively when ourside the home (sometimes using an electric cart in the grocery store) and actually danced in public on Saturday night!!  For those of you who really know me, you know dancing is the top of the mountain for me.  We went to a friend's mother's 80th birthday party.  We had worked with our friend and her husband  on their dancing (they used to take dance lessons from us), and we joined them on the floor.  I didn't look anything like I used to look, but my feet moved to the rhythm of the music!  It was wonderful.
     I have been following the Dr. Phil diet and have lost 8.5 lbs and feel fantastic!  On Saturday, I told John I feel like I did before MS came back to live with me in 2010.  My mood is euphoric, too.  I drove to Tallahassee by myself on Friday and actually shopped three stores.  Of course, Melanie (my sister) was with me for two of the stores, but it is still an accomplishment. Oh, I forgot to say that I can walk 10-15 feet without using my cane, something I never thought I'd be able to do again. I am still so grateful to Dr. Fedorenko for giving me a chance to regain my life.
     The only physical hold-back for me in the last six months has been my hip flexors being so restricted.  In the past two weeks, I have finally been able to stand up straight and not look as if I'm 90 years old.  I have to quit saying that as my sister-in-law's mother is 92 and more spry and feisty than I.  We should all be so blessed.
    Just felt as if I needed to record my progress for me and for my friends who care to keep up with me.  Thanks to all of you who care:-)

Moscow Journey-Day five, Friday, June 27

    Today we get the show on the road!  11:00 am steroid infusion.  Steroids do two things to me:  Rev me up and make me talkative.  Now there are those of you who think I'm loquacious normally; turn that up by 100 when I'm on steroids.  Scary, isn't it?  John and I usually take a stroll down the hall visiting with our new HSCT friends.  John has learned to let me sit on the seat of the rollator so he has control of when we leave each room.  He just proceeds to start rolling me out as I'm mid-sentence which is truly kind to our new friends.  The nurse comes at 11pm and 3am to give the neupogen shot to stimulate those little stem cells to start leaving the bone marrow and gravitate to the blood stream.  This procedure lasts four days, and then they install a port in my jugular vein to extract the stems through.  I will, hopefully, have produced two million per kilogram of weight.  There's yet another reason to hate being overweight!  I have to produce more stem cells.  Oh, the first three days I lost three pounds.  I thought, hey, this might be the most expensive weight loss program yet!  Of course, this has not continued.  They serve four meals a day: 8:30 breakfast of cream of wheat? Or rice?  Two pieces of bread and baby yogurt.  11:00: Second breakfast or mid-morning snack of 2-4 baked apples, boiled egg, and slice of roast. 2:30: Lunch of large serving of mashed potatoes (real ones), 2 slices of bread, yogurt, mystery meat unless there is cow tongue or no meat.  Sometimes they serve a small can of what appears to be baby food meat as it has a picture of a baby on it.  One patient wittily called it boiled baby head!  Wait, I'm not finished!  5:30 Dinner (or supper if you're from the southern USA) consisting of some sort of high fiber soup, more bread, sometimes mystery meat but not tonight.  Tonight we had some sort of dessert that looks like cheese cake or bread pudding, firm consistency, slightly, with raisins baked into bottom.  Quite good.  I suspect they might eat more healthfully than us Americans, except for the massive amount of bread.  It is fresh baked- no preservatives, but it is not my favorite.  Oh, they leave your dishes in your room, and you are expected to wash them yourself!

That's enough for today.  It is 11:30 and the sun has just gone down,  It will be light about 4 am.  A sleep mask is imperative.  

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.

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.

Moscow Journey-March 6, 2015

Well, I'm kind of down today.  My physical therapist said she doesn't think HSCT worked for me!  Why would an uninformed person choose to say something like that?  I've been having more leg,pain and trouble walking the past few days, and I attribute that, in part, to the negative input.  I have to push myself more to exercise and be more aggressive in walking and doing all the exercises they have given me. It's so easy to sit and not get up and deal with the pain, but I know if I do that I might as well resign myself to a life of NOT walking!  I admire my HSCT friends who have been so aggressive in their exercise programs.

Moscow journey February 26, 2015

   Well, I'm obviously not very good at blogging since I'm confident I posted in January and once in February and cannot find either post.  That means I need to catch up on what has happened since December.  After being told I have a recent fracture in my pelvic bone and that I could not go to physical therapy, I was given permission to start physical therapy in the third week of January.  I feel I've made progress since I started therapy with Dawn and Marjorie.  I am still having problems with spasticity in my left leg which affects my agility and flexibility.  Dawn suggests that I have a Botox injection in my left hip to reduce the tone in my leg.
    I am pretty mobile around the house and have resumed some cooking and clothes-washing but am not able to get out of the house by myself.  John has constructed a temporary ramp with which he helps me get outside on my rollator.  My immediate goal is to regain independence and be able to get outside by myself, put my rollator into the car, drive to a store or someone's house, get the rollator out of the car, and walk into a store or house alone.  That sounds so simple, and I was doing all of that before we left for Russia in June.  I was regaining those skills but my fall in November threw me back into the ditch.  I am attempting to get back to the place where I was in October physically.
    I can see Dawn's skepticism when I told her about HSCT, and I told her today that I will print out some info from George Goss, the knowledgeable man who has spread the word about this procedure, to convince her that HSCT is a proven process.  She stated that she isn't convinced that it has been effective for me.  I told her that the effectiveness doesn't fully manifest itself until 8-12 months after HSCT.  She then indicated that I should work hard at my exercises to use this window of opportunity to its best advantage.  I agree with her on that issue and need to get busy!

Moscow Journey-December 11, 2014

    I continue to use the wheelchair (lent to us by a close friend) and I walk with my back bent like a 95 year old.  On the bright side:  I've lost 24 pounds since I weighed in the second day in Russia.  For how many years have I fought to lose weight?  Of course, when I weighed 123  pounds in high school, I thought I was fat!  In any case, I now weigh what I weighed four years ago when M.S. Came back into my life.  I can't enjoy the fact that I've lost weight because I'm so inactive that nothing is toned.  I just live on the belief that I will heal, begin to walk normally again, and my fractures will heal.  Here's where my faith in God comes into play.

Moscow Journey- December 2, 2014

     I saw the orthopedist today, and the pelvic fracture is"healing nicely".  He saw no signs of another fracture, so I guess all my pain, whining, and complaints are in vain.  I told him about having difficulty straightening my left leg and problems in walking. The doc explained that using the wheelchair and sitting too much causes the problems I'm having with my left leg, BUT he cautioned about being too enthusiastic about walking!  Soooooo, I need to walk to keep my leg limber, but I must be careful not to overdo it!  I need to use my level of discomfort to determine how much is too much.  I am grateful to know I have no new fractures.

Moscow Journey- November 26, 2014

It turns out I do have a hip fracture but it's in my left hip and the right hip is the one that is/was hurting. Did you reread that?  The right hip stopped hurting after 2 X-Rays, 2 MRIs, and 4 doctor's appointments.  I was told that I should sit or recline to let the fracture heal.  I thought, "That's all I do anyway."  Well, one has to move if one is going to live a normal life, so on my way from the wheelchair to the throne, I had a small fall.  Of course, it was on the left hip where I already have one fracture.  By all signs, I might have another fracture.  The hip and upper thigh are swollen and are extremely painful. I called my orthopedist today, and I was told to come to my scheduled appointment on Monday.  As if I would miss it!  I'm praying it is a very tiny fracture because the doc mentioned hip replacement if I had another injury.  I've had my share of hospitals this year!

Moscow Journey-November 15, 2014

      Well, I seem to be the queen of bad luck.  After getting Dr. Fedorenko's recommendation that I have X-RAYS because of my extreme hip pain, I did so and learned I have three fractures in my spine; they did the hip x-RAYS later and don't have those results yet.  I have MRI scheduled Monday morning and apt. with orthopedist Mon. Afternoon.  Looks as if I'm headed to procedure to inject cement(?) in vertebrae to prevent collapsing.  I'm okay with this because in three days I've gone from walking with rollator to being unable to lift right foot off floor due to excruciating pain in lower back; therefore, John is pushing me everywhere as I sit on the seat in rollator. I need to find a wheelchair for temporary use until I have this procedure. Praying I'll be able to walk again after the procedure is done.  Your prayers are appreciated.

Moscow Journey-November 13, 2014

     Well, after being positive in my last post, I'm back to whining again.  Terrible pain in both hips to the extent I've declined attendance at several events I really wanted to attend because It hurts so badly to walk, even with the rollator. At this point I'm not ready to say I regret having HSCT, but I'm really ready for some positive results.

Moscow Journey-November 3, 2014

I just read my post from Oct. 3 which makes me so pleased with the progress I'm making.  I hurt so badly from the hip and back pain I was actually taking Percocet every four hours for the pain.  Well, now I take one Alleve every 24 hours, so my risk of becoming a drug addict is alleviated! The pain I have now (usually back) is a level 2 or 3 as compared to a 10 a month ago.  God's blessing again!  I see the chiropractor and PTA twice a week.  I practiced walking with the cane, and on Thursday I actually walked about 20 feet with my cane in my hand but not touching the floor.  Tonight we went to a Sunday School dinner and were there for about 3 1/2 hours.  I'm joining the living again!

Moscow Journey, October 9, 2014

Well, I didn't plan to be posting again so soon, but I just want to say,  Goodbye Bursitis!  The pain from the bursitis seems to have left, and I can't express how great that feels.  I am still having some muscle spasms in upper left leg-referred pain from hip, I'm told-but not having the hip pain will slow me to make progress in healing from the HSCT and, hopefully, regain and surpass the walking skills prior to Moscow.  My physical therapist is aiding me in balance and walking and says she can see improvement, so I'm encouraged.

I just felt compelled to share since I've done so much whining in my last few posts.