February 8, 2009

A long awaited update ...

I apologize for not updating you all on my progress sooner. It has been somewhat of a whirlwind since the beginning of the year. I have been getting phone calls and responding to emails daily asking about my stem cell treatment experience.

I have continued to experience good results since having the stem cell treatment in Costa Rica last November. My balance is excellent and I continue to see well out of my right eye. The best is that I still have not had a bladder or bowel "incident" since coming home! The fatigue is noticeably less and my stamina continues to increase. Cognitive function is clearer, some days clearer than others. Numbness continues to lessen.

As of tomorrow I will have been off my MS medication, Tysabri, for 17 weeks. I wasn't sure if I was going to continue the medication when I got home, but so far, so good.

I call my boyfriend Sergeant Raj. He set up a regiment for me to follow to help the stem cells keep working (per his conversation with the doctors at ICM). He bought me some weights and some stretch bands and a new beach cruiser. Basically I am doing somewhat of the same physical therapy routine I was doing there. I didn't have a choice, the drill sergeant made me, but I am glad he did

The physical therapy is simple and not too overwhelming. I spend about 40 minutes in the morning using light weights (2 lb.) with my arms and legs. I stretch and I also use "chip clips" and "hair clips" to strengthen my fingers. I also either ride my bicycle or swim everyday as well. It seems like a lot, but I'm not giving this a chance not to work. I can tell that the daily exercise and movement really does help.

Because I am back working, sitting at my computer, reading, writing, and being on the phone again, I am noticing changes. I type better because of the increased sensation in my fingers. I'm reading better because I can see better. Before I left for Costa Rica, I was having trouble working at all. Couldn't concentrate, frustrated with the difficulty in typing, and was having trouble seeing out of my right eye.

Because I was feeling so much better than before I had the treatment, I did try to "push the envelope" and had to step back and reassess. If I sit too long, I notice the tingling and cold feeling coming back into my hands and feet. That was the same sensation I had before being diagnosed. The first few times it happened, it really stressed me out. But after readjusting my behavior, I realized that it wasn't permanent and that I can't go back to my old habits and work environment of before I was DX with MS just because I am feeling better. The stem cell treatment wasn't a miracle. It is a medical treatment and I need to keep remembering that I need to help my body help itself. Sounds so cliché, but it's the fact and science of how the cells work.

I am happy so far with my progress. I am still doing the "alternative" stuff I was doing before I left, like acupuncture, massage therapy, yoga, and diet. I was drinking a Chai Tea Latte mix during the holidays that was warm and sugar sweet, but I had to stop. My fingers would tingle and feel more numb the days I drank the Chai, so again I paid attention to my body and stopped, and felt better immediately.

I finally am feeling comfortable enough to increase my liquid intake. I am up to about 32 oz. of water a day. I know I NEED at least 64 oz., but I will get there. I had stopped drinking water all together before the stem cell treatment because I did not want to have bladder incontinence. I am educated and do know that just because I didn’t drink water, it didn’t mean that I still wouldn’t have incontinence. It was just a subconscious act of not wanting to deal with the bladder urgency and incontinence. The more people I talk to, the more I realize that so many of us have the same feelings, same behaviors, and same symptoms. I didn’t think I would ever feel comfortable taking about the bladder and bowl problems that sometime come with MS. The topic used to make me cry

Now I have had the opportunity to talk to other patients who have had treatment at ICM Costa Rica for MS, Diabetes, Spinal Cord Injury, and Autism. I have also spoke with patients who have been to Europe, Russia, Israel, China, and Mexico for stem cell treatments. I have been told more good thing than bad, and trust me, I had looked for the bad before I decided to try this because I didn’t want to make a mistake because of being blinded by false promises of miraculous cures. I am fortunate that I was not at such a desperate place yet because of immobility or total loss of function so that I did not just take internet stories of wellness and success with stem cell therapy as fact. I did the research, listened to classes at Stanford and other Universities about stem cells, called medical specialists ad researchers. I am lucky that I had the resources available, the clarity to still understand what I was learning, and the desire to not give in. I’m glad I made the decision to give the stem cell treatment a try.

That’s all of my update for today. Sorry it's so long and sorry it's been a while.
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