My view …

February 2, 2010 at 11:40 pm

I feel compelled to join in this discussion for many reasons, so here we go …

• This is Alice’s story – to tell as she chooses
o She brought it to the attention of the forum – I had not heard of this before
o She kept all of us informed through her (and Sophie) updates
o She gave us the links and information so we could research for ourselves
o She explained the difference between this and treatment for cancer
o She inspired many and gave hope
o And she states she is cured – her story, her words, her realization

• I’ve seen the results up close and personal and they are REAL and amazing
o I contacted Alice as soon as I read her posts about this in the forum
o We became fast friends and Skype daily
o When I met her, she was severely limited in agility, strength and energy
o As she went through the stem cell process, I saw each and every step
o I witnessed each and every high and low
o The resultant changes I continue to see daily are nothing short of amazing
o She is off all “treatments” and continues to progress daily
o She is working out again
o I flew to Chicago and visited with her, Sophie and Jim (now going through this process)
o I am a living witness of her amazing recovery

I am what many would consider a “success” story … from my lowest point; I’ve come a long way. The horrible, horrible, horrendous pain is under good control; I’m back working full time and even dancing a few nights a week!

However, I am living a diminished life.

I was very high energy and very active. I was my mother’s primary care giver. Now, I have to take extra pain meds before and after dancing. I am tied to an IVIG treatment chair every two weeks. I require more sleep. My mom had to be moved out of state to be near my sister. It takes me twice as long to do anything involving my hands/arms. I can’t retire to the location of my choice due to needing to be near good medical care. I can’t travel with my daughter – who lives half way around the world. I can’t retire and enjoy what’s left of the “good years” because I need my insurance and, oh yes, a biggie – the $6,000 out of pocket I get to come up for this year on top of my share of the premiums, which goes up each year.

I take 10 prescription pills per day to control the cramping and pain, not including the extra pain meds I need to take occasionally – especially if I do anything physical. While I can dance, I cry if I spend more than 20 – 30 minutes pushing a grocery cart. I cannot do my gardening, my eyes don’t have enough left in them to read after working all day (and I LOVE to read) and I find my beloved pets sometimes to be too demanding when they just want to be in my lap when the pressure of them on me causes me pain.

And, at some point, it is understood that the IVIG treatments and pain mgt could become less successful. Oh yes, I live alone, have no family in the area to help me and must depend solely on myself financially.

I also recognize I am very lucky in very many ways. I have a good job, flexible hours, an amazing community of friends that help me whenever I ask, insurance, my own home and many, many blessings. I know that I am NOT in the worst situation and that many in this forum would trade with me.

However, I don’t want to be treated. I WANT TO BE CURED!

And Alice’s story gives me the hope I will be. Some damage from the ravages of our illness cannot be reversed, so it is best to do this sooner than later. [B]I don’t see this as a last resort effort [/B] – in fact Dr. Burt’s interview clearly states it is not as helpful after much damage (still stops the progression, but can’t make the repairs).

With hope that there is already a cure for these diseases, I am in the process of applying for this program.