Never in a million years did I think I would be creating a blog.
It also never occurred to me that I would have something to say that was “blogworthy” if that’s a thing.
Starting this HSCT journey with the hopes of curing my MS has made me realize that this is an experience that should be recorded and shared.
HSCT stands for Hematopoietic stem cell transplantation. “HSCT is the type of stem cell therapy in which a patient’s existing immune system is completely eradicated through the use of powerful chemotherapy drugs and is then rebooted via an infusion of their own stem cells. Some of the results reported have been nothing short of astounding, and even previously skeptical neurologists are now being forced to consider HSCT as a potential game changer that may significantly impact the MS treatment landscape sometime in the not-too-distant future.” (http://www.wheelchairkamikaze.com/2015/06/recent-research-on-hsct-stem-cell.html)
Reading the blogs of the others in Dr. Burt’s study has inspired me. The more stories I read of others who are experiencing, what I hope to experience, this miracle of HSCT, the more comfortable with the process I become. Even the parts that look painful, or scary, or just awful. They’re all parts of the story.
Like all stories, mine has a beginning.
So here it is:
In 2003 I was diagnosed with Multiple Sclerosis (MS).
I had been sick for several years but it didn’t have a name that stuck- I think it started with mono in my early 20’s and I just never got better. My other theory is that maybe the Norplant birth control thing I had implanted in my arm just messed me up somehow. I had it removed after a couple years due to the weight gain and not feeling well. At the time it seemed like a great idea….I was a month shy of 18 when my son was born in 1992 and when the doctor suggested it I thought it was a great idea. It’s since been taken off the market and I still wonder if it didn’t trigger something.
I was always exhausted. My doctor sent me to an endocrinologist….”it’s hypoglycemia” he says. “Read the book Sugar Babies.” Then when I complained about the pain in my arms he sent me to a rheumatologist…..”it’s fibromyalgia” he says…..”I have it too.” You know how they test you? They poke you in some trigger points and if it hurts then you have it. I decided to change doctors. The new doctor thinks it’s subclinical hyothyroidism. Nobody knows for sure what it is and I’m busy raising a little boy by myself so I just walk it off.
In 2002 I began working at a Supportive Living community in Chicago. I met one my now best friends Marilyn, a nurse, who I worked with closely converting an independent living community into a supportive living facility model. She remembers me telling her about falls that occurred when I went away to weekend retreats with the youth groups I led at my synagogue. I don’t remember falling but I must have had a fall or two if she remembers me telling her. The defining moments that I remember are when I would be walking down the hall with Marilyn and push her into the handrails on the wall and she’d exclaim “why are you walking me into the wall?” And I would tell her “I don’t know I’m just clumsy lately.” She knew that all too well. We would walk across the street to Burger King for a break and get our King size Diet Cokes. Mine would slip, right out of my hand, because i couldn’t feel it….and it would splash all over the floor and make a mess. To this day she won’t let me carry any beverages. One day after I pushed her into the wall while on our walk, she asked “do you have numbness and tingling in your extremities?” I told her “no, why?” She said “don’t worry about it if you don’t have it.” Of course I pushed her for more information and she said those were MS symptoms. But I didn’t worry about it, because I didn’t have those symptoms. Until two weeks later.
Early 2003 I woke up and couldn’t feel my feet. I called my nurse friend Marilyn and told her “you know how you were asking if I had any numbness or tingling? I do now.” She told me to go to a neurologist and get a diagnosis. I found one in my insurance plan. I remember very little about her- I just remember being 28 years old being in an exam room with her and my parents and her telling them I have Multiple Sclerosis and that she found 3 lesions on my brain. I guess she had ordered the MRI before I even met her? I don’t even recall. My mom remembers the doctor saying I could quit working on go on disability. I don’t remember that either. I remember my dad buying every book he could find about MS and he passed them out to the family and told us to read them and trade with each other so we could all learn about this disease. The only thing I remember reading in one of the books was “it’s okay to be in denial, as long as you take your pills and do what you need to do.” So that’s all I needed to read. I sold the books on Amazon. Dad found Dr. Stefoski at Rush in Chicago. It wasn’t far from my job and he had an excellent reputation- “the best” as my dad was told. When he looked at my MRI he said “that neurologist only saw 3 lesions?” and he started pointing and counting “1, 2, 3, 4, 5,6, 7, 8….” and I told him to stop counting. I didn’t want to know. I started on Avonex. Marilyn injected me on Fridays at work so I could recover on the weekends from side effects (until I learned that Aleve before and after fixed the flu symptoms) and then when I changed jobs I had other wonderful nurses who would “stick me.” I never felt “well” I just felt varying degrees of crappy. Which may not be a feeling but it should be. Over the first several years there were a couple times I didn’t feel well and there would be new lesion but he felt Avonex was ok. Until this year.
In May of 2015 I noticed my lip was numb. I remember telling one of my mangers that it felt weird. Then it spread to the left side of my entire face. I got an MRI and my neurologist told me he was admitting me to hospital for a few days for IV steroids. I refused. I told him I was covering multiple departments and working out my notice period with my job and it was bad timing and that was impossible and to just give me pills. We argued, I’m stubborn, so he prescribed 100mg of predisone a day for 2 weeks. But it didn’t work. i kept getting worse. I couldn’t drive to work- my mangers took turns picking me up and dropping me off. Then I was walking arm in arm with them into the building and holding onto the hallway rails designed for our elderly residents….and the staff who were crying because I was quitting were now crying because I was a mess. So I agreed to go inpatient.
In June I spent a week in the hospital getting IV steroids. Dr. Stefoski came to see me and told me Avonex was no longer working for me. I had just seen him in March and everything was fine. He said I should leave the hospital with very few symptoms. Unfortunately that wasn’t true. I still couldn’t drive. I could barely function. I had a week off inbetween the hospital and my new job. It wasn’t enough. I ended up resigning from my job after only 3 1/2 months in October. It was too far away and the time lost in my car with the energy I had already lost was just not a combination I could live with. I decided to take the rest of the year off and focus on my health and live off of my savings and take some online classes.
In October i decided to look at the clinical trials website to see if Northwestern still was doing a study. A friend had told me about the Northwestern study for stem cell transplants 10 years ago but my son was young and I didn’t think he could deal with me going through chemotherapy and it just wasn’t possible. Well sure enough I found the clinical trial and it’s now in phase 3 and i decide “this is it!”
Loved reading your blog!!! Wanted to PM you. whats the best way?
Maybe on Twitter? Chicago_ellie