Ocala, FL; email@example.com
1964 / Class of '99 / Indolent MM / Bone pain, headaches / Last Update: 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
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.