My first flare occurred in 1990. I was
recalled for operation desert storm as a reservist to active duty military at the time.
The docs did not know what was wrong with me. I initially had what was
thought to be
conjunctivitis and when it did not get better the military docs sent me to see the eye
docs that I worked for at the time and it was discovered that I had Iritis. That was
my first symptom. Prior to being recalled, I had just moved to California and was
working for an Ophthalmologist so in order to see my children that weekend I called him
because the military docs wanted me evaluated by an ophthalmologist---anyway I drove the
100's of miles and met him in the office about 9 pm and sure enough, he diagnosed the
Iritis. That next morning, I woke up with a stiff neck, didn't think anything more
than
that I had slept funny or something. As the day wore on, I felt tired and began to
swell all over. I was pretty frightened as being in the medical profession--I could
not imagine what was wrong with me at the time. My
husband and I had reservations to go eat at a nice resturant and when we were getting to
go I noticed that my wedding rings were getting tight on my finger
and also a ring that my grandmother had left me. My husband of course wanted to stay
home but not knowing what was happening to me, I insisted we go and
have a good time----probably some denial in there too. Anyway, we got to the
resturant ordered our meal, I had a couple sips of the wine---I have never acquired a
taste for alcohol so sips is the best I can do anytime. lol. By
the time we got our steak, I had to ask my husband to cut mine as my hands were so swollen
and painful I did not have the strength to cut it. My husband kept trying to get me
to go, but I still kept insisting "Iam OK". I
know we both had worry and fear on our faces---even though I was trying to hide mine.
We finished our meal and HA! HA! then I wanted to dance, much to
the insistance of leaving from my spouse. We walked to the dance area of the
resturant, sat at a different table and watched others dance. I really was worried
to tell my husband just how bad I felt so I continued to attempt to
hide it until he wanted to dance to a song and I could not get up out of the chair without
him lifting me up. By now the swelling was in my neck, shoulders, elbows, hands,
fingers, hips and knees. We left immediately after
that. lol. When we got home, he called a doctor at the clinic where he worked on the
base at China Lake. He came over to the clinic to meet us and after he saw me, he
perscribed Prednisone and Darvocet for the pain. He then sent us out to the local
hospital emergency room expecting the doctor there to admit me and well, it was not a
favorable experience----coming from a
nurse. The doctor ran a few blood test---some of which were helpful, some not.
My sed rate at that time was in the 50's and going from memory, my WBC's were
elevated, and my liver enzymes(remember I said, I am not a drinker). The RA factor
was negative. I don't know if an ANA was done at that time or later but it was + ,
like 1040. The doctor suggested one of the rings on my finger be cut off as it was
really tight and the Nurse that came
over to do it treated me as if I was a drunk because my liver enzymes were elevated.
I was really scared by this time and all I could do was cry. She took my arms
and flung them around as I could not lift them by myself, I
could not even go to the bathroom when I was sent home without the help of my husband---a
truly humbling experience if you will. I was able to walk once
lifted from the recliner---forget getting in and out of the bed at that time. I
could not sit down by myself, I could not unbutton buttons due to the swelling in my
fingers and I basically felt like a vegetable. I was suppose
to be back to Lemoore on Monday morning for my duty assignment and was unable to drive
myself back there. The doctor in the clinic called and told them
how bad I was----they did not believe him. I think that with the war being on and
all they thought I was trying to get out of it. Little did they know that I love my
country and would never do that. Anyway the hospital I was
assigned to sent a driver to come pick me up. He drove crazy and I was in so much
pain---I felt every sharp high speed turn and every bump ten fold. We
arrived at the hospital and when I told them at the ER I was still having trouble doing
for myself, My fingers still did not work to well. So, I was finally admitted to the
hospital. I think I had been on the Prednisone about
4 days by this time. I was evaluated by a medical internist who had
"suspicions" of various diagnosis to explain what was wrong. He worked me
up
for everything from A to Z seems like. Since my ANA was + and the rheumatoid factor
negative he was thinking at the time SLE, Reiters, Sarcoidosis, Serum Sickness,PSS, and
Viruses. After I was discharged from the hospital, of
course I was expected to return immediately to work. It did not seem to matter that
I was still swollen and still in pain. Though my swelling and pain was
considerably less, it was still there. So on my admission evaluation the doctor
wrote:"Acute onset of polyarthralgias with minimal
physical findings of joint swelling or synovitis". Approx. four days after
being on the Prednisone! However the initial evaluation I had done at the clinic
revealed a completly different picture. Anyway, I felt helpless and
hopeless and that my care was completly mismanaged from the getgo. After that the
hospital I was assigned to wanted me to follow up with a Rheumatologist in Oakland
California. I had to drive myself there countless
times in a flare when my fingers could hardly grip the steering wheel.
Sometimes, a girlfriend of mine would be allowed to take off work and drive me there.
Then the stairs of the barracks I was staying in. There was not
an elevator to use. It seemed to take so long to get up those flights of stairs to
my room. Finally I think it was in December, I told the doctor how hard it was for
me and they moved me to the first floor. My friend moved
along with me and she was truly a God Send. She was from the same unit as I and
lived in the same town----she worked where my husband worked prior to the
recall and she really took care of me. I would not have made it if not for her
dedication and support. Later, when we went home on the weekend, she would either
follow me or she would drive so I could see my children---my
husband was also called away to Kuwait a few months later. After the "war"
was over and I got home, first of all--I did not have the job I had when I left---it had
to be filled with others as I was away for 7 months. So I kinda filled in here and
there in the clinic I worked in and continued to
have problems. My husband and I drove as far as San Diego to find a
Rheumatologist---this was quite far from where we lived. There was not a local
Rheumatologist in the area. It became evident that the primary doctors
in the clinic where I initially had been treated would manage my care as we were not able
to make the 100's of mile trip to San Diego when I was actively flaring. This
resulted in the Rheumatologist never seeing me until days later---once again on high doses
of Prednisone for 3-4 days and the swelling/pain(s/s) minimal to what they had been.
Then my spouse was transferred to Virginia. There I found a doctor that would
inject my hip
with Cortisone when I was having difficulty walking and prescribe prednisone with the
flare. Still, I did not have a diagnosis. My diagnosis at that time was
Sero-negative Arthritis. And at another time it was possible
palendromic rheumatism. On and on it went. I continued to feel hopeless, that
the Doctors would never figure out what was happening to my body. It seemed that I
was simply being treated for the symptoms I presented with
without a desire from anyone to find out the cause---other than from myself, my family
and the Docs at the clinic in California (who always saw me at my worst).
Then we moved to PA. My spouse now retired from the military after 20 years.
YEA!!! No more moving. I found a doctor here that actually took
interest and seemed to listen. And he did. When I was in RN school one day
near the end of my schooling, I was in Psych at the time. I woke up to a red rash on
my face,neck, upper chest, and upper arms. Later this red rash spread also to my
forearms and thighs. I mentioned it to the Rheumatologist where I live now and he
was curious. Of course by the time I saw him, the
rash had faded some. It was still on the forearms and thighs a bit though. He
began to take my temp when I came in and interestingly enough, I had a low
grade temp. In the 99's. I had a temp last night at work----99.6 (easy access
to the themometer) lol. Mine never seems to go that high. Anyway in
August, I had a small flare which resulted in my missing yet another day of work. I
was on orientation at the time with my new position of an RN so I showed up anyhow.
I could barely walk the pain in the hips was so severe.
The person precepting me, said go home and I did. Next day, my hips were injected
and I was back to work that night---still a bit sore and stiff---kinda just shuffled the
ole' legs. I made it though. Then I was back to myself and the End of November
my neck started to swell. I felt like
I was trying to hold 8 heads on top of my shoulders. My stubborn self went to the 3
day trauma nurses class though and just leaned my head against a
wall when my arms got tired of holding my head up. Again the rash was back.
I called my doc. and started on 80mg of Pred. only this time, I did not get better as
usual. I ended up in the hospital right before Christmas on Pulse
dosed steroids and IV pain RX. I had become short of breath, my chest and back was
painfully swollen. Incidently when we lived in Virginia---My lung
had collapsed twice requiring a pleuradesis to repair it. The BX showed nothing.
My pulmonary function test were great. That happened within 6 months of each
other and right after a flare. The second lung collapse
episode, I was at work in the ER. That is where I worked at the time. I did
not even notice that I was short of breath until a patient that came in every weekend for
me to refill his portable antibiotic IV pump said to me; "What is
wrong with you, I think you need to be on this gurney." I had learned to just
deal with the pain until I could no longer stand it or no longer move my
extremities. Can't take pain medication and then go to work as a Nurse---treating
other patients. That just would not be safe, and since I like most folks have to
work----------well, that meant I had to learn to deal
with it. So to answer your question as to when I was diagnosed. Just this last
December 1999. I think he suspected it sooner as he did mention the
Diagnosis I think in November. I had no clue as to what Stills Disease was at the
time. I did however know all to well the symptoms. Those I've had on and off
for greater than 9 years. And I was lucky at one point I had
absoutely no symptoms(except for the collapsed lungs) for a little over 1 year. I
did not know that was a symptom at the time. Neither did my Rheumatologist in
Virginia. So this is my story
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