Almost 11 Months

The reason why I haven’t posted anything since May is because I haven’t experienced any benefit either.  This has been the most difficult year of my life.  I know that there are people in a much worst condition than me, but I can’t help it: I miss so much myself from not-so-long ago.  I wish someone knew what determines or what avoids the progression and feeling fatigued, besides what we all know: sleeping well, good nutrition, exercise, rest, avoiding stress and heat… Until May I went one step forward and two steps back, but suddenly everything “seemed” strange.  My physiotherapist swears that besides some days in which I was extremely fatigued, my disease has not progressed. I had tonsillitis, and became voiceless.  I experienced extreme dizziness. I couldn’t even stand up some days and they run the cranial nerve VIII test. It turned out I did have some deficiency (??)  I still don’t know why the dizziness comes back some days, but there are stable days too.  In order to eliminate any possible “something” in the brain, I had an MRI that showed even smaller scars than on March's, which according to my neurologist could translate in eventually some improvement.  He will attend Ectrims 2013 next month in Copenhagen.  Hopefully there will be anything new…

Happy springtime southern hemisphere and happy autumn northern one.

Take care

7 Months

This has been a very special month :o)  

I have been feeling much better, and  I sometimes realize that things that were difficult to do... I just did them! Some people tell me I look like before going to Germany.  

In a progressive, disabling disease, each reversal is miraculous! When I arrived I used a wheelchair, then a walker and now I've been able to use the cane! I walked barefoot in my appartment without holding onto anything (with tears in my eyes!) and I went walking on the elevator hallway with the AFO only holding sometimes to the wall :) 

I still have to avoid crowds because the hemato-oncologist said my immune system is still the one of someone with Aids, but I feel very optimistic.  One of my goals was to be able to attend to my daughter's school graduation ceremony on December using the cane and now I know I will! 

I asked my physiotherapist a report and this is it:

Much less fatigued.  Higher tolerance to 45 minute exercises

Right side of the body (the affected):

Diminishing spasticity (only some at ankle articulation level)

Fluctuating foot ankle articulation clonus that disappears with exercises.

Lower extremity:

She achieves triple flexion and is improving strength, active mobility and increasing repetitions

Upper extremity:

She achieves shoulder and elbow flexion with more tolerance to the exercise and increase in repetitions.
Hand: achieves fist with diminishing spasticity
Gait: Dynamic balance present with larger support base
Achieves walking without any technical support and fewer compensation of trunk, head and neck.

My recovery is also dedicated to someone very dear that passed away.  She must be very busy now arranging everything for her kids and her closed ones, but I know she is also very proud of me in heaven…

6 Months

My daughter noticed I was feeling better just when I got home after the hospital last month.  I've been taking  the antibiotics and I'm getting stronger.  People that haven't seen me in a while say I look more "ambulatory".  I even dared to take a cab the other day (with the walker) and went to a meeting with my son's school teachers.  Then I took a cab and came back home.  I only live two blocks away from school... but I did it!  

I'm working hard with my physiotherapist and although the antibiotics make me very dizzy, I realize I get better each session and this has been a tremendous relief for me...

I'm feeling optimistic.  I know the recovery has ups and downs, but now I understand the post transplantation dynamics.  

I think it's time to share with you the illustration made by Phoebe Scopes (who also went HSCT) that perfectly describes the situation I'm going through.

Thanks Phoebe!

Everybody take care