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Toxic Treatments are not a Cure!!
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Top 15 Visited Pages (October 24, 2008) 13. Lupus Headaches 15. What is Lupus?
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My name is Kaitlin. My story begins back when I was barely a teenager
in the early 1990s maybe even earlier. It began as sun sensitivity,
migraines with odd visual symptoms, and pain in my right side so bad
that I wanted to die. I was diagnosed with an ulcer, trust me this was
almost the stupidest diagnosis I ever received, and was told to avoid
sun exposure. I was also told that the ulcer and migraines were from
stress and that I should relax and be a kid. The symptoms continued and
new ones were added- mouth ulcers, pain in my chest, pain in my legs,
fatigue, the list goes on and on. All this was before I was even 17. I
had 3 babies all requiring months upon months of bed rest. I got
pericarditis with the last and was told I should not become pregnant
again. By this time I was in constant agony. I had no energy. My life
was a dark hole and despite multiple doctor visits I was getting no
help. I was sent to a psychiatrist and diagnosed as depressed. I tried
anti-depressants and got no relief- in fact I had a very nasty reaction.
The suddenly in 1999 I got a few month of being almost a normal person.
My symptoms were gone as mysteriously as they had appeared. I became
pregnant again. The pregnancy was very difficult and my symptoms
returned. When my baby died I was devastated. I had been through this
once before in 1996 with my second child. The loss drove me into a deep
depression at the same time my health was going down the drain. The pain
became so bad that I was basically an invalid. Since all the doctors I
saw believed my problems were mental and suggested activity to take my
mind off my loss I began taking college classes. I did very well in
school, first getting my Associates and then my Bachelors Degrees. Yet
my health continued to fail. By the time I entered graduate school I was
extremely weak and in so much pain that my life was bed and classes. I
was dying, no one believed me but that is exactly what was happening. My
husband was quite sure of what was wrong with me because of an article
he had read about lupus and pushed me to keep trying to find someone who
would listen. I joined an online lupus community. Many of those there
sided with the doctors who said I was crazy. Yet, one saw in what was
happening to me a similar story to what had happened to her. She gave me
the name of her old rheumatologist. I made an appointment intending this
to be my last try for help. If this failed I figured maybe I should just
give up and live like I was for the rest of my life because I was sick
of being treated like trash by doctors. I had no belief in or respect
for the medical community. The day I saw this new doctor I again took my
list of symptoms and past history. I also took pictures of the rashes,
especially the butterfly rash I had been dealing with for more than 14
years straight. She looked at the symptoms on my list, at my pictures,
at my past medical history, at my family history of deaths from lupus
complications, and at those symptoms visible that day. My hands were
swollen so that they were nearly claws, red, and warm. Other doctors had
seen the facial rash and my hands and still said I was imagining my
problems. She looked past the negative ANA blood test and saw that I had
more than enough of the 11 diagnostic criteria to say I had lupus or
another autoimmune disease. She began treatment that day with plaquenil,
NSAIDS, and a low dose of prednisone. It took a long time but some of my
symptoms improved. Then the pain in my right side returned with a
vengeance. The ER sent me home saying I had IBS, but the pain was right
where my liver and gallbladder were located. My rheumatologist sent me
to a different hospital and told me to ask for a special nuclear
medicine scan to see if my gallbladder was working. It wasn't and worse
it was 3 times the normal size. I had bile backed up so badly my stomach
was full of it. I could not hold down anything. I was in so much pain I
told the doctors flat out I would rather go through natural labor again.
Finally a week after the test showing my gallbladder was shot I had it
surgically removed. The pain I had lived with since age 14 was suddenly
gone. No evidence of my ever having had an ulcer was found. I was
extremely weak after the surgery, but had it been put off even one more
day I would likely have died from what the surgeon said. It took more
than 18 months to recover a portion of my strength and aggressive
treatment. During that time in addition to SLE I was diagnosed with
Raynaud's, Sjogren's, and Rheumatoid Arthritis. I even ended up
diagnosed with psoriasis. The crippling pain in my spine was finally
reduced to bearable levels using first Humira and then Enbrel. I had a
breast reduction to help manage the pain further. Yet one extreme source
of pain remained. Finally after 2 months of physical therapy and a year
of being bounced from specialist to specialist by my primary care doctor
my rheumatologist referred me for pain intervention. A simple nerve
block to 2 peripheral nerves in my upper right thigh brought the pain
under control. We began shifting my medications because finally after
more than 2 1/2 years of fighting I was achieving a remission of the
SLE. I wanted to try one more time for a baby. I did rounds of
specialists and all felt it would not be a problem. I am currently 13
weeks pregnant and due in May. After more than a decade and a half of
suffering I have achieved a level of disease control neither I nor my
rheumatologist ever expected. Yes, my liver enzymes rise if I am taken
off certain medications, but no permanent organ damage has occurred-
something miraculous considering my family history. I have hope for the
future. I may be unable to work now, but I am in graduate school
studying to become a librarian. I am making very high grades and won a
fellowship to pay for this school year. The road ahead may be rough, but
I know that thanks to my rheumatologist I now have a future. If it
weren't for her willingness to diagnose based on at least 7 criteria and
possibly 8 (the blood tests come back different every single time so it
is hard to know for sure if the positive readings on some of the tests
are a fluke especially given the low level positives I get). She saved
my life quite literally. She has given me a chance to do something more
than suffer in silence. Her treatment of me has even opened the eyes of
my family- who had always ignored those members with symptoms like mine,
something that likely contributed to the death of two family members
from untreated lupus related complications (neither person ever received
treatment for their lupus and until they were very close to death their
ANA blood tests were negative causing doctors to claim the problems were
mental). Now when symptoms like mine are found in members of the family
they are urged to see a doctor instead of being ridiculed and called
hypochondriacs.
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