Sunday, October 26, 2014

2do año. (¿Último post?)

Queridos amigos:
Hoy se cumplen dos años del trasplante de células madre.  Son dos años en los que mi enfermedad se podría haber detenido.  Sin embargo, no fue así.  ¿Por qué? Nadie sabe...
Gracias por confiar en mí y regalarme esperanzas.
Y a quienes siguen a mi lado, gracias por regalarme su compañía, amor, tiempo y amistad.
Disfrutemos cada día.
Eternamente agradecida...

R. Karina

Saturday, October 26, 2013

1st Year

Hi dear friends,
Today is my 1st transplantation Birthday.  
This has been a year of accelerated spiritual growth.  It began with three months wiping off the chemo and its impact, opportunistic infections, physical ups and downs, hopes and disappointments… It was a year that I lived “isolated” while life went on.
I never stopped doing my three times a week PT, and suddenly I started being surrounded by a group of angels.  Pablo  H. helps me go from one place to another with so much tenderness and patience.  Claudia R, Claudia and Taly E and Nurit  P. jumped into my life for no specific reason, but they always visit me like fairies that sprinkle their dust and leave home with a special scent … Thanks to Elin’s idea, I started doing Yoga and there I found Angeles, the Yoga teacher, and a group of sweet women.   Of course I can’t do all the exercises, but I’m happy if I do 1/8th or 1/4th of them; at least I go out of my house for another reason that it’s not a medical exam or a doctor’s appointment.  Rafael is the physical education teacher that is with me twice a week for two hours each.  He’s been essential in accepting the disability which has been so hard for me to do. 
I’ve witnessed many people with Remitting Relapsing and Aggressive Relapsing MS experience miracle improvements after their transplantation, and even some Secondary Progressive ones.  I don’t know if it depends on how long they have been progressive, their disability status… I really don’t know, but I know for sure that Heidelberg University Hospital was the best facility I could have gone to and that fully myeloablative transplantation was right for me, and as HB’s Dr. Blank said, it’s impossible to know how I would have been now without the transplantation.
There’s still a year ahead in which I could experience improvements.  So, as long as it is hard to continue being patient, being surrounded by these new angels in my life, helps a lot.
I send bright stars to Mellisa, Elin, Phoebe, Bassam, Maryam, Toni, Monique, George, Carmel, Scott, Wendy and Eddie… We’re so distant apart, but so close at the same time.
Take care,

PS: Important statement: “No matter how many times I break down, there is always a little piece of me that says ‘NO, you are not done yet.  Get back up’”.


Watch this link please.

Monday, September 23, 2013

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