I had no idea what was wrong with me, but I knew I was different. I had pain, everywhere, for no reason. I always felt weak and couldn’t keep weight on. Thus my candy addiction began. Helped with the weight thing, and it was delicious.
I still remember hiding from Mrs Aroldie as a child. She was our neighbor / nurse who came by daily to give me my shots for allergies. Allergies and asthma two of my top reasons for hating hide and seek. I was allergic to everything, especially the things in my front yard. I was "IT" all the time, always the first to be found. They followed the wheezing.
Mrs. Aroldie was the reason I hated shots. That, and shots hurt!
As a teen, I had constant bladder infections. I had myself convinced I got them from toilet seats. Thus began the OCD. Six paper gaskets weren't enough. (Ever spill your own glass of water on your own lap to cover your own, accident?) Me. TEN times. I became McGuyver. Blond McGuyver. (Still am to this day... I can do anything! Make a bong out of an Apple. Hell, I even figured out how to turn my new Apple Computer on.)
Then in my twenties I began tripping over imaginary steps. I fell a lot. Thank God we live in California, sometimes I pretend we just had another earth quake. "Did you feel that?"
In my thirty's I was tripping over baby steps, and in my forty’s, I tripped over the "Big" Book on my way up the 12 steps. Hi, my name is Sandi I have MS. MS has effected me my whole life, I only wish they had figured it out a whole lot sooner. I thought I was a Hypocondriac.
In college I had my perfectly good appendix removed, from what I have learned since, is simply called the MS hug. I had also heard it called girdling. Which is more like what it felt like, like someone was tightening my girdle, a little too tight!
In 1987, right after my first son was born, I began fighting fatigue. Not just your "I'm a little tired", fatigue. The, "I can't get out of bed, even if there is a huge piece of chocolate cake sitting on the counter." kind of fatigue.
Then in 1989, I hurt my back. OK, I ruptured two discs in labor with my second son. Two surgery's later, I was feeling a little better, because I had the feeling back in my legs, but I wasn't feeling great.
In 1995 I developed numbness on half of my face. At first I was told that it might be Bells Palsy. Then they thought it might be a brain tumor, or possibly MS. I didn’t even know what MS was. I didn't know anyone with Multiple Sclerosis, so I wasn't able to clearly comprehend how frightening, debilitating, and serious this disease really was.
Had an MRI and spinal tap, that’s all it took. Diagnosis Multiple Sclerosis. I couldn’t even read the books about it, because of my double vision, also from the MS. I got on the internet. Didn’t like what I saw. I needed to know more. What was this disease all about? How did I get it? When? Where? Why?
MS sucked. I was loosing bladder control. Had double vision, and walked with a cane. My doctor put me on Avonex, a drug that helped slow down the progression of the disease. Except, I had to give myself a shot. I am still hiding in the closet from Mrs. Aroldie. I am not giving myself a shot.
OK, I tried it once. Poked myself and said, “Yep shots still hurt.” I couldn’t do it once a week. Plus I threw up for days after. My husband stepped up. He gave me my shot’s. I still owe him for that.
A couple of years down the road. I had been on one long exacerbation. I began to get worse. I kept every symptom I knew, and a few I didn't. They showed up and stayed.
My gait was sporadic. I had muscle spasms in my legs, arms, and back. My double vision had gone from eighteen feet to four feet. I didn’t know if I needed the cane to walk, or to just find the ground. My speech was slurred, and the shaking in my hands became so bad that I couldn’t hold a pen, or paintbrush. Which meant I had to give up my mural painting company.
I had become "Progressive."They told me that I would be in a wheelchair within 5 years. I couldn’t imagine it.
I was angry, frustrated, and scared. This f’in disease is diabolical. No two people get MS in exactly the same way. They have no idea how you get it, why you get it, when you get it, or how to get rid of it.
I saw what was in store for me. I did not like the odds. I heard about experimental stem cell research in early 2000, through an angel named Deb (new millennium, new beginning). I went through mine March 31st. Ground Zero. She passed away some 7 or 8 months later.
I had an autologous transplant using my own Stem Cells. First they took my stem cells out through a Pharisees machine. Put me through radiation and chemotherapy; to kill my old immune system. Then gave me back my own stem cells. Theoretically it would stop my MS. No rejection factor. Oh! And by the way, most insurance's won’t cover a penny.
It wasn’t easy. But, it had only been a year and a half years since the transplant when I realized I no longer had double vision, I no longer needed a cane to walk and my speech was no longer slurred or garbled. Sure I had signs of MS, but I was so much better. The procedure worked.
At my 5 year MRI, I still had the lesions on my brain, but just as they thought, my brain has found new pathways to get around them. I am getting better and better by the day. When they did the new nerve conduct test, the doctor couldn’t find any damage.
I had my Gall bladder removed, August 2004. They found it riddled with Vasculitis, a new autoimmune disorder. Disease #352. So far, that is the only place they have found the Vasculitis. I feel better without it.
Then my thyroid acted up. On November 16, 2005, I had it removed. After the chemo and radiation treatments it never worked correctly. First it was Hypo, Hashimotos disease, then Hyper I was then diagnosed with Graves disease. My body began producing an antigen which began attaching to the tissue behind my eyes which caused the muscles to swell. So, with my bulgy eyes, I made Marty Feldman look normal.
I had to have decompression surgery, May 11th 2006. To stop the pulling on my optic nerve (I was going blind), they do this by making two slits at the corners of the eye, break the bone, remove my eyes, take out the material from behind my eyes and then putting them back. My left eye was looking down my nose, while the right eye looked straight ahead. They call it a lazy eye.
July 5, 2006 Surgery was done to reattach the muscle on my left eye. It didn't work!
March 26, 2007 I had the second surgery to reattach the muscles in my left eye.
In July 2008. Third eye surgery. Third time was not a charm here. This surgery did not go as well as we had expected. Close my right eye, everything appears to be going down hill. Close my left eye and everything is straight.
So they gave me an eye patch and sent me on my way. To therapy. Thank you Dr. K. I am getting used to the eye patch. Without it I see double, with it I am a scary thing little kids run from in the store.
Any Questions? You can e-mail me at firstname.lastname@example.org
I do not know how to thank Dr. Mason enough for giving me this second chance at life. My MS lesions on my brain have stopped multiplying since my Stem Cell Transplant, March 31st, 2000. And, my MS symptoms have almost gone away completely. Sure there have been a few complications, but therein lies the comedy.
Without Dr. Mason I would not have had this chance at comedy.
Thank You Dr. Mason for everything!
You can contact him:
Telephone # (858) 554-8597
Or write him @: Dr. James Mason
Scripps Green Hospital
Bone Marrow Transplant Unit
10666 North Torry Pines Drive
La Jolla, Ca 92037