Kathleen

 

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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