|Ocala, FL; email@example.com
1964 / Class of '99 / Indolent MM / Bone pain, headaches / Updated: 4/01
I was born in Ocala, Florida in November, 1964 and I'm a Native Floridian. I was diagnosed with Indolent Multiple Myeloma in Dec '99/Jan '00 at the H. Lee Moffitt Cancer Research Center in Tampa Florida. I was in good health up until a severe car wreck in March of 1984, in which I had injuries to my face, hip and shoulder, my neck and back were out of alignment, and I was knocked unconscious. After the wreck I had migraine headaches, a lot of bone and joint pain, and several bouts with upper respiratory infections. I went to several Doctors to be told it was in my head or due to high blood pressure, which I was treated for and still had migraine headaches, bone/joint pain, and tiredness.
Protein showed up in my blood work and urine when I was pregnant with my first child in 1991, and I was told it was due to gestational diabetes. Same thing with my second pregnancy. All this time I was still experiencing the same symptoms and feeling very tired all the time. It wasn't until I fell at work in July 1999 that it was discovered something wasn't right. I went to the Orthopedic doctor I was assigned to by workers comp. He sent me for one test after another and then to an oncologist who was very cocky and contradicted everything the Orthopedist had told me to do. The oncologist did the blood tests, urine test and called me back a week later to tell me I had MGUS. I had a feeling that it was more than that, and went for a second opinion at the H. Lee Moffitt Cancer Research Center, knowing my family history and how many relatives we've lost due to one type of cancer or another.
Dr. Saba took a look at all the tests I had taken and decided to do a bone marrow biopsy. That is the most painful procedure I've ever gone through. My two C-sections didn't hurt as bad. My husband and I then left and went home to wait for two weeks to go back and find out the results. Went back in 2 weeks and was told I had Indolent Multiple Myeloma and was sent to talk to the BMT team there. All this was within a week's time. My head was spinning from being told all these different things.
I now go to the center every 2 months for pain management and see an oncologist in Ft. Pierce, FL. I found out that the migraine headaches and the bone/joint pain and the tiredness and the different upper respiratory infections are all part of this disease and that I'm not crazy: it wasn't in my head. I worked until October 2000, when my migraines started coming more frequently, and I woke up to not being able to use my right arm. I went to the local clinic where I was x-rayed and given a shot and anti-inflammatory and muscle relaxants. I've been on Celebrex and vioxx, both which caused severe diarrhea after a while. I tried neurontin which made my face very red and felt like my face and back of my neck were crawling. Right now I'm on 800 ibuprofen, baclofen, amitripylin, ambien, and imitrex. All these seem to work for a little while and then I'm right back to square one.
My level went up only 0.7 since I've moved here to Okeechobee, FL. I've applied for disability but I haven't heard anything. My family is having a really tough time financially and I've contacted the local organizations that the American Cancer Society gave me to no avail. I've missed 2 of my doctor's appointments because our vehicle blew an engine and was in the shop. I couldn't get any help from the Medicaid office or other local organizations to help. Thank God for my parents who helped us get our van fixed. My grandmother helped us with our phone bill. We're 2 months behind in rent and I worry everyday that we're going to get evicted.
This past year has been very hard on my 10 and 7 year old boys. I've been truthful with them from the start about all that is going on. The scariest thing is not knowing if I'll be here to see them grow up and have their own families and accomplishments. My husband and I keep praying and hoping for help as well as a cure. I feel like a complete failure because I've had to put all the financial responsibility on my husband and I have a hard time being intimate with him because of the pain. He's dealt with a lot at work as well as our personal lives. It finally hit home and he broke down this morning. He has been my rock in all of this and I've known him for 26 years. We've been married for 14 years in June.
I would really like any information you can give me regarding this disease. I don't want to have to go through the transplant because the results aren't that great and it takes time away from my boys and my husband. There has to be an alternative.
Thank you for your time and God Bless You.
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