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9-2-08

My life changed on Sept 2nd 2008.  I work in various hospitals. I am an occupational therapist. My endurance has changed ever since I almost died of this mystery illness. On Sept 2nd, 2008, while working in the ICU, I began to feel cold, really cold. After working with a patient, 3 hours later, I had chills. But figured it was the flu coming on. Within a few hours, I had developed a huge lump under my right arm-pit that hurt like hell.  It was  about the size of apricot, sticking out from under my skin. I had trouble keeping my arm down. I was cold, very cold. I kept working but decided to leave a bit early, after my boss saw me and said it was best If I got some rest at home. It was 112 degrees outside. I walked through the parking lot to my car, shivering, freezing, my teeth chattering, muscles shaking as I walked through the Arizona blistering heat to my car. It must have been about 120 degrees when I got into my car, but I still turned the heater all the way up. I drove home, teeth chattering, frozen cold… That  night I awoke, the lymph node under my arm, in searing pain, teeth chattering, and a fever like I had never known before in my life, 103.2

I couldn’t raise my arms due to pain in my shoulder joints. They were somehow becoming frozen, red, inflamed, swollen. Every movement made me scream in pain. I could not lift my arms to drink a glass of water. When the fevers broke, drenching sweats followed with the feeling of ice water being poured over me.

I figured I had the flu. But 3 days later, temperatures still to 103, chills, body aches, muscles shaking and body aching, teeth chattering so hard I thought I would crack them. An Arizona summer, 114 degrees outside, and I would sit on the patio with a sweater, wool coat and a blanket around me. Swollen neck glands so tender I could not swallow. Tylenol gave me a 3 hour window of temporary relief around the clock. And as soon as it wore off,everything started all over again, day after day, night after night.

My abdomen was getting swollen, painful. I would push on this area to try and stop the pain. I would sit on the floor facing the sofa and push my abdomen into the couch cushions to try and find some relief for my abdomen. It never occurred to me to think of my liver.

1st visit at Mayo Clinic, both physicians who saw me felt I needed a strong antibiotic, Levaquin. So far, blood showed a normal white limit. I did as I was advised, I took the medication.

The pills gave me extreme diarrhea ,vomiting and dehydration to the point of delirium and hallucinations. Still nothing had changed. Spiking fevers, drenching sweats when the fever broke, 3 hours of  relief and then temperature went right back up again. The next day my husband took me to Mayo emergency room again, with a very swollen, tender abdomen. MD thought it was due to my diarrhea and vomiting from the levaquin. He gave me I.V. for fluids, then sent me home.

3rd emergency room visit a couple days later at 11pm to Shea Hospital. The ER doctor palpated my liver area, and I almost jumped to the ceiling as I cried out and screamed. I was admitted this night.

Tests followed for the next 10 days, along with checking for 53 different and viruses. CT scans done at 1:30 am, X-rays at 3am , blood cultures ever 4 hours, both arms,  lumbar punctures, specimens taken every few hours. Blood chemistry labs revealed that my liver enzymes were dangerously high. My Ferritan level was at the worst time 14,000. 103.2 Fevers, shaking, chills, diarrhea, drenching sweats when the fever broke every several hours and a rash was developing. I looked like a raspberry.

Dry heaving and vomiting constantly. It was 8 days without solid food so far. I was on a liquid diet. All the blood vessels in my eyes, and around my eye sockets were bloody from broken blood vessels. It looked like blood would spill from my eyes if I leaned forward.

On the 7th day in the hospital, my veins collapsed. A PICC line  was placed in my left arm to my heart. This made things easier. At least no more having puncture my arms to have labs drawn at 1am and 4am. I could not tolerate any light. My eyes were so sensitive. I felt hopeless. At points suicidal. One painful day blended into the other. My rash appeared in the evening at 7pm with all of the symptoms, but would mysteriously disappear by morning. The MD in the evening would document a rash covering my body, but the morning MD would not see it. They were puzzled.

On the 10th day I was released in a wheelchair. I could not walk more than 15 feet.I went to recuperate in another city with my parents since I could not stand for more than 2 minutes or walk more than 10 feet. They came to get me and drove me. Nothing had changed. In fact I was now worse than when I went into the hospital.  I slept 18 hours a day for weeks. I had lost so much weight, down to 99 Lbs from 130.

No diagnosis or explanation of what was wrong with me . The infectious disease doctor simply said “sometimes we just never know why some people get so sick, I wish you luck” as he wrote my discharge papers. It was September 9 when I was admitted and September 21 when I was released from the hospital.

The way I found my diagnosis was with the only energy I could muster. For 9 weeks, with blankets and frozen joints, 103 fevers, drenching sweats, a salmon colored rash that covered my entire body and came about at 7pm each night (one of the hallmarks of this disease), teeth chattering, swollen lymph nodes through my body, elevated liver enzymes. I had enough energy to search the internet only 1 hour a day. I typed the same symptoms in the computer every day. One day the diagnosis Adult Onset Stills Disease appeared. I made copies of this information and eventually, shameful, humiliating experience with another physician, I begged and pleaded for a referral. I finally found my way to a Rheumatologist, Dr. H. who has been seeing me ever since December 18, 2008.

To learn more, please read my pages:
My Diagnosis Didn’t Come Easy
What Is Adult Onset Stills Disease.
Evil Visitors

Thank you for taking time to read my journal. Maybe somehow it can help another person.

Stay healthy my friends.

 
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Posted by on October 1, 2008 in What is Stills Disese?

 

This Too Shall Pass, but the pain is so bad until it does :-(

I have been procrastinating. It’s a strange feeling of “if I don’t go to the web page, maybe I can post something more cheerful. I am sorry I waited. Things has been awful. But, I’m glad to be alive, so I guess this balances things out. My flare on 1/28/19 was a doozy.

What a nightmare of a flare. The symptoms came on like wildfire. The telltale cough. The feeling of freezing, although everyone else is warm, the evening arrives and the drenching sweats and chattering teeth so hard I feel as if they will shatter. The jaw pain from the spastic muscles of chattering.

The emergency room visit and IVs and the explaining and explaining, blah blah blah. They called my specialist and we started the labs and Medrol.

But why is the human mind like this ? Why do we think if we ignore it, it will go away. It’s a strange phenomenon.

It’s been 2 months. I have flared twice during this time.

One week when I just got sick of the Medrol and I said “SCREW THIS!!” In more colorful words.

I was fine for 24 hours and then……WHAMMO‼️‼️‼️‼️‼️I had never had a flare kick me in the ass so hard !

My fever went sky high -(102) I was vomiting repeatedly and had chills and chattering teeth and joint pain. And the strange thing, my eyes were leaking yellow pus and were so swollen shut I couldn’t see. I was terrified I was going to go blind. The other additional symptom was a raised, very red and pointed rash appears. NOT the typical rash. It was firm rash, very isolated to hips, thighs and abdomen. It went away in 2 weeks but it was odd.

I started the medrol and the MTX again and have not had a huge repeat.

Although, I cough when I get very tired and I feel like I’m going to collapse and cry from fatigue. The intensity of the fatigue is whole body pain. I drag my feet. I cry.

It sucks, but I’m alive. And if you’re reading this, then you are alive too.

And I am so glad you are here with me.

Well, time for the methotrexate injection. Live on. Love on.

Stay healthy my friends,

Claudine

 
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Posted by on April 16, 2019 in Daily Update

 

Trying to get a flare quickly is a joke

The flare started on January 28th. It came on so fast it was strange. It was like the dragon said “I’m back! And you better watch out !”

I have been on the Medrol for 6 weeks now and the methotrexate injections. It’s working well.

I am feeling better. But, foolishly, one day I was feeling fine and thought, “I must have caught this flare quickly and I can stop the meds!!! ‼️WRONG‼️. Very dumb of me. That evening I had symptoms that were so intense I was scared. The sweats and chattering teeth woke me up and when and I stood up, I started vomiting and coughing so violently.

The vomiting turned into a dry heaves nightmare. I could barely catch my breath. During this the sweat poured into my eyes from my drenched sweaty hair, burning my eyes. The intensity broke the blood vessels in my eyes. My husband held me but I felt awful that he needed sleep to be at work early. He is so supportive and loving.

Eventually the episode stopped. I was so weak. I sat in a chair I keep next to the shower due to the fatigue I have from showering. I get exhausted very easily.

I’m very diligent now. I have no desire to repeat my dumb idea of “Hey! I must be cured now!!” Only 2 weeks into a flare 🙄.

So, I know, this too shall pass. I just wish it would hurry it’s stupid self out of here.

Stay healthy friends,

Claudine

 
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Posted by on March 20, 2019 in Daily Update

 

ED with a diagnosis this time gets the ball rolling

Not at all like the years before when I flared, the doctors had no clue what to do with me. As my labs, back then climbed and my ferritin level reached 14,000. Right now we caught it 3000.

All echo and heart monitoring is normal. Thank goodness.

 
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Posted by on January 27, 2019 in Daily Update

 

Sadness and fear of this flare

I know that stress is a huge component to Stills flares. The rash has come on slowly over the last 10 days, but I justified it as hives or emotions from having these broken bones for 6 months.

I didn’t take the rash seriously until 2 days ago when I lost all appetite and got chills around 7pm. I went to sleep and drenched my night shirt.

Last night my teeth chattered all night and my body was covered in chills as my drenched the sheets with sweat. Hip joint pain has started. The routine was to use a 100% cotton robe to absorb all the sweat and change into more shirts every couple hours. Always have towels on the pillows to catch the sweat pooling up on the sheets and drenched hair.

But now it’s time to go to the hospital. Get my labs drawn. I pray that the major organ affected is anything, but please God , not my heart. I have seen 2 patients in 24 years die when the heart is attacked by the disease.

So now, I ask for prayers. I will rest and let my body return to normal with medications and IVs

The evil visitors have arrived but they will not be here long.

Prayers please friends.

Claudine

 
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Posted by on January 27, 2019 in Daily Update

 

Stress is our enemy.

It’s been a journey I never want to take again. It’s been absolutely horrible this ordeal.

In August I slipped on our flooded tile floor when I came down stairs. The floor had flooded with an inch of water everywhere. When my foot slipped on the water I hydroplaned across the floor. My left leg went under the couch where it was pinned.

My leg swelled immediately. Thank goodness my husband was home to free me. The next day I went to the doctor thinking I had a sprained ankle. The doctor didn’t do much he said just take care and use pain meds. The xrays has showed NOTHING.

A few days later of screaming all day and night I went back. They did and MRI and found my femur was bleeding out due to a severe contusion and a femur hairline fractures.

2 months later I kept telling them my foot hurt and was swollen and I cried in pain and could not walk without crutches. He sent me to a orthopedic do not that also said I has a sprained ankle.

I went home crying and in pain.

2 months later I went back again because I couldn’t walk without pain. I went to a new orthopedic MD and he found I had 3 broken bones in my foot. For 4 months I’ve suffered and cried in pain. He put me in a cast and use a knee scooter.

The stress of all of this and and now the cast for a month has caused extreme stress in my body. I was so cold last evening and could not warm up. I shivered and tries to eat dinner but went to bed instead. I slept 13 hours and had 2 drenching sweat episodes.

I prayed please no, please dear lord, do not add a flare on top of this. Please dear lord I beg.

This last month going on 6 months now, there is light at the end of the tunnel. The cast comes off on Thursday. I have not been able to stay at my home due to the stairs and only the kitchen and living room is down stairs. So I have been staying with my mother. I miss my husband , I miss my cats, I miss my horses, i miss living my life. I miss my life.

 
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Posted by on January 26, 2019 in Daily Update

 

Caution. Extreme fatigue, high and constant pain can bring on a flare

Could so many days of pain that does not subside bring on Still flare? I know it can, but I don’t want to even allow the thoughts to take hold in the universe.

My poor leg. Our 1st floor of our house flooded and I came down the stairs and hydroplaned across the white tile floor into a couch. My left leg went under the couch and was stopped my knee cap. And have 2 poor broken toes that hit the leg of the couch.

The MRI reveals I have several high grade contusions to the lateral and also medial femoral condyle. I have a 4 x2 cm capsulosynovial cyst that formed on the medial femoral condyle. The pain I feel when I take steps is light electrical shocks. I cry at night when I shift or move my leg. I wake up tired and in pain.

I must wear brace for 4-6 weeks 😣

No flexing knee for 3 weeks

No jacuzzi

No running

No jumping

No riding horse

No long distance walks

This is all very awful, but the symptoms I have at night are the most worrisome.

I’m not sure if the extreme cold I feel at night with teeth chattering and then a fevers that beaks is due to experiencing constant pain? I did have labs drawn a month ago for a different situation. The labs were normal. But I may have to go back and have lab draws again soon.

The fear of a chronic illness that lurks in the dark is always in the back of my mind.

This past year I have endured so much pain from getting a knee in the jaw, a wrenched back from lifting patients at work and a Right leg tibial contusion. Now this. I’m exhausted from being in constant pain. I try and be mindful. I try to embrace the pain because I know there are people suffering in much more pain than I am.

If I could take the pain away from abused animals by having and accepting this pain, I would do it. But in the meantime and brutal existence with pain, I take a deep breath and pray.

Stay healthy my friends.

 
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Posted by on September 9, 2018 in Daily Update

 

Sleeping 14 to 16 hours makes it hard to have a life

I have been feeling very tired lately. Is it due to the weather change? Diet change, stress? Who knows. I had my labs done and everything seems fine. But as always, if I over do my activity or if the weather changes and I exert myself harder than usual, my fatigue is so tremendous that I require a ridiculous amount of sleep.

I feel as I can fall asleep anywhere. If I just push myself to get the necessary tasks done, grocery shopping, cleaning up the house, feeding pets, making dinner, I become very cold and my teeth will chatter and I must sleep.

This weekend I slept 14 hours and then was awake for 3 hours then slept andother 2 hours. I felt fine after this long sleep. My husband is very supportive of me. He can tell when my immune system is causing some havoc. Stills disease is so uncommon and rare that very little is actually known, and it often goes misdiagnosed. Many people suffer for months in and out of hospitals and ICU and then even then a diagnosis isn’t found, as in my case. Depending on the organ affected, AOSD can take a life.

With this summer weather coming on, please be mindful of your energy expenditure  friends. Although you may not be in 110 heat as in arizona, you will need to pay attention to the humidity that can drain you.

 

Stay well my friends, minimize your activity in this difficult weather.

Claudine

 
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Posted by on June 4, 2018 in Daily Update