Day +291 – My Body Still Has To Catch Up with my Brain

The I still can’t get over that my blog has been viewed over 30,000 time.  I count my blessings everyday for all of you who love, support and pray for me.  That is the true miracle of this whole process.  I write this post as Rosie and I are flying to Philadelphia to see 2 of my besties. It is the first time I have flown alone since HSCT and it has been much easier then I remember pre-HSCT.  However, we checked bags and got dropped off, so it is basically sitting.  Lol  So, in honor of my travels to snowmageddon, I give you my latest symptom status!

MS Improvements – I am not the best person to sit and recognize all the improvements I have had.  I think I block out stuff and easily forget the pain and suffering I had on a daily basis.  Not that it is gone, but it has improved so much.

  1. Eye pain from optic neuritis – probably my worst MS symptom.  My largest lesion is only optic nerve, so it was the thing that I suffered with the most.   I know it sounds odd to think how bad can an eye hurt.   Unless you want to stick a stick through the back of your eyeball… Be glad you don’t know that answer.    I had this weekly and sometimes daily.  I would max out on any pills I could to try and touch the pain.  At one point, Dr Burt thought I may have another autoimmune disease NMO because of this, but I didn’t.   As of today, I have had this pain 3 times since the transplant. This alone was worth the process for me.  
  2. Walking – for the most part, walking has been significantly improved.   I had to use a cane a bit over thanksgiving because we were away and the walking and standing was too much on me,  but the leg pain, foot drop and numbness are almost non-existent. Walking using 
  3. MS Hug – this is a symptom I have yet to see any improvement in.  It still happens and it still hurts, but since I went into HSCT looking only to prevent progression.  I am still doing very well!
  4. Numbness – while not gone,  my numbness has improved quite a bit.   I still have issues holding things at time and fearing they will drop, but I have a long way to go before all the effects of the HSCT are shown so I still hold out hope.
  5. Hearing – this is how my MS was discovered.  I lost the hearing in my left ear.   This isn’t a frequent symptom, but it is an annoying one and one that still shows its head from time to time.
  6. Fatigue – unfortunately, I still suffer from sometimes severe fatigue.  I am however anemic and am having thyroid issues, so I still have hope.
  7. Arm pain and numbness –This is one of those symptoms that I didn’t know was MS related until it went away.  When I am tired, stressed or sick and it comes back…., i get a quick reminder of how amazing HSCT is.
  8. Speech  My cognitive issues have i proved quite a bit, but I still struggle with words or slurring now and then.  This symptom was getting progressively worse quickly, so I am so very thankful for the improvement and much more the  stopped progression of this symptom.  

I’m sure there are more symptoms, but the were some of my worst.  As for me post HSCT, I continue to recover and continue to repeat mistakes by overdoing it.  I spoke to my doctors this week and they (yes more then one of them) want me to slow down and focus on recovering, so I am going to do that. As most of you know, my recovery has been a bit complicated (not overly).  I had shingles, strep throat, countless colds, I’m anemic and my thyroid is out of whack.   All of these things and a very fast paced work life mixed with the need to pull my weight and be a mom to my daughter is adding difficulty to my recovery.  I live my life in a constant state of exhaustion and guilt for not being all I should be for my parents, Fran, my work and most of all Rosie.     I get that the guilt is stupid and my body and mind have been through quite an ordeal, but it is also something that is natural and others will go through, so I need to share the truth here. This procedure is not just physical, but mentally draining.   That is why physiological clearance is required…. I know, I can’t believe I passed either.   Lol

Besides… At least I am not Max the cat.   He is the one who has it really bad.  Lol  

 All my love to those of you in process, thinking about HSCT, suffering with any disease or just simply reading this.

Xoxo,
Colleen
PS –  I can’t believe I am flying somewhere a blizzard is hitting.  Lol. But I truly believe that good can be found in any situatio if you look hard enough.  In this case, I couldn’t think of a better crew to be snowed in with!!!

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