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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?

 

Be mindful today.

If you want peacefulness in your life, cultivate peace. If you want compassion in your life, cultivate compassion. If you want kindness in your life, cultivate kindness. We must live what we desire.

 
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Posted by on October 9, 2019 in Daily Update

 

Kick that dragons butt!!!!!

My morning Coffee Doodle today. The steroids are kicking in. Love them/hate them. I am sure you know what I mean. The night time drenching sweats are dwindling and almost gone, the rash has not shown up in 24 hours now. We caught this flare SO early. YEASSS!! Kick that dragon’s butt!!!! — feeling hopeful.

 
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Posted by on September 20, 2019 in Daily Update

 

Kick some dragon butt!!

There is NOTHING to like about having AOSD. We feel like we are dying. But if you can catch your flare in time, before you have to go to the hospital and before the frozen joints set in before the screaming out at night due to dragons grip on us, and before the teeth chattering and drenching sweats and muscle spasms that make me cry for ours, can say I love steroids.

I consider catching this flare this early as nirvana when the high proscription of meds begin to kill the dragon before he’s taken complete control.

Strange to say Nirvana right? But, when one lives through, literally hell, with this disease, catching it before the worst symptoms sets in is pure joy.

And this time, THIS TIME, we are catching it early!!! YEASSS💪🏼‼️

Kick that dragon butt!!!!!!

Outside

And the steroids, right now I consider it the breakfast of champions, is like eating Captain Crunch with strawberries and cold milk while watching the sun rise and hearing the birds chirping!

It’s the simple things that make me happy.

Thank you for being there.

Stay healthy my friends.

Claudine

 
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Posted by on September 19, 2019 in Daily Update

 

It always starts this way 😢

Does anybody else start this way ? When you feel your body changing possibly heading towards a flare, and you can’t get warm? Feel freezing and unable to get warm? Right now, trying to avoid a flare after a very traumatic situation that landed me in the hospital overnight with heat exhaustion due to the trauma situation. It’s been a week, but have been sleeping 12 hours and today the inability to get warm. Sitting outside. 104 degrees in Arizona, wearing UGGs and a sweatshirt. 😢. Trying to avoid a flare. This sucks 😞

Mostly because after 8 years of no flare, I flare bad January 28th and got off all meds June 1st.

I thought I was free and clear. -[sigh😞]

Thanks for being there for me.

Stay healthy friends.

Claudine

 
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Posted by on September 15, 2019 in Daily Update

 

Is it the trauma or is it stills trying to break in?

It’s been 6 days since the horse incident. After the event, I slept 14- 17 hours a day. I did force drink fluids, some food then exhausted and back to sleep. I went to see my beloved horse today and my trainer was very cautious and attentive. She rode him 1st and then I did for 20 minutes. I miss him so much. He is such a good boy. I miss my mini horse too and, like my arabian they are both in the best care a horse could have.

I get so fatigued SO quickly. I know my potassium was critically low as well as magnesium and sodium. I have been drinking electrolytes. The normal feeling only lasts about 40 minutes, then so tired.

My husband felt a cozy dinner out at one of our favorite places might increase my appetite. It just made me feel queasy.

Then the chills started. UGH☹️. This makes me wonder if all the fatigue and loss of appetite, nauseous feeling is the stupid dragon trying to make an appearance. “NO!! NO!! You are not invited you stupid beast! Stay away!! I’ve suffered too much this year already.”

This all makes me very sad. It’s Arizona and I’m wearing leggings, thick socks, a T-shirt and a heavy sweatshirt. Not good. It’s 7:15pm and I’m going to bed now. 😞

I have too much that is very good coming up in the next month. I need my strength so badly.

Thank you for being there.

Prayers that you stay healthy and I get healthy.

Good night friends

 
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Posted by on September 15, 2019 in Daily Update

 

When you can’t say no in an emergency situation but it may risk your life.

I didn’t feel that well when I woke up that day to begin with, but I went and visited my sweet mini horse in the hot Arizona heat.

I’ve only been off my meds for 90 days with the fierce instruction to AVOID ALL STRESS. Easy enough I thought.

Not feeling well after seeing my horse I headed home. But felt I should call the owner of the barn and tell her my horse needed some supplements. She and I spoke and I decided to make a u-turn and go to the tack store and buy and give her the supplement for the horse. She gave the supplement. And we sat down and chatted.

As we sat watching my mini horse and the mini goats, we jumped to our feet to see her prized horse was going into colic (a life threatening situation).

It was hot out and I had to stay and help, as she was alone. She called vet offices as I walked the horse as it was trying to lay down. It took all my strength and tears attempting to keep the horse on its feet while she stayed on the phone with the emergency vet clinic. I was very upset, overheated. I had never witnessed this before and the fear terrified me.

She stayed on hold, frustrated and scared we made the decision to haul the horse in. She instructed me to stay in the horse trailer with the horse and not let it lie down or risk it hanging itself and dying. I had never been in such a situation. I was crying and over heated and terrified. We drove and I screamed and begged and pulled at her horse while it buckled to its knees. I cried sobbing tears in the hot trailer hoping this horse would not die. I was overwhelmed and drenched in sweat due to over 105 degrees in the trailer. The poor horse wrenching it’s neck in pain and slumping against the trailer wall. I used all my strength and screamed “NO!!!!!! Don’t DiE!!!! We are almost there!!!! PLEASE Hang on sweet girl!!’ We are all almost there!!!! Please DONT die!!!!

My heart was racing as pouring sweat stung my eyes. Trying to stand as the horse trailer moved on the road I was sick to my stomach.

Finally we arrived. We got the hose out and the horse buckled again and tried to collapse. We screamed for help as techs and vets ran out to save her. Finally she was in the trauma bay and getting help. In shock I walked to the bathroom and threw up clear fluid 3 times. The floor was cool as I lay down and tried to keep from passing out. I knew I had to hold it together. The horses owner was with her horse In the trauma bay. I called my husband. I told him I didn’t feel well.

I watched them put tubes in the horse and felt ill. My husband arrived and he had me follow him home as I drove my car.

We arrived home, my head was pounding. My heart was racing and my chest hurt. My husband said I stared into space and didn’t talk. He put me in the car and to the emergency room. I was suffering from shock, heat exhaustion/ heat stroke. We did tests all night. I didn’t have a heart attack. But the emotional trauma of the situation was not good for me. My brain overheated and I was extremely low in electrolytes.

It’s been 3 days days now. I’m still extremely exhausted and sleep 17 hours a day. This is scary since my flares start with so much sleep. I pray I am not entering a flare. We never know where a flare will end up.

Please lord spare me from a flare. I just ended my meds 90 days ago. I never meant to get in such a traumatic situation. But once it begins you can’t say no.

Stress kills.

I’m so exhausted. I hope I can bypass a flare from this extreme stress.

Please friends stay healthy.

Sometimes you can’t walk away from someone needing help, but with our rare disease it can cost us our life.

Stay healthy my friends 🙏🏼

 
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Posted by on September 12, 2019 in Daily Update

 

Dear Stress, I hope you step on a Lego

The last flare ended and I got the OK form the MD on June 14th, 2019 to stop the meds. YAY!!!!! Celebrate!!! I should have written about this then, but I was not sure if I could celebrate quite yet. And then after a month, I just felt fine and kept hoping that if I didn’t pay attention to any thought of Stills I could keep skating under the radar. Unfortunately, Ive noticed my tactic is, if I don’t think about it, this also means I avoid my blog, which is not good for me or anybody.

I know I have found great support with this blog and the Stills Foundation Blog when I was suffering at my lowest points, unable to walk, and function with this disease and near death. There were times I was so afraid of dying, the disease was not in control for several years. And this is how terminal thoughts arise from constant pain, and suffering. (But enough of this ). And then when things start going really well with my health and i get SO happy and I skip along like a dopey unicorn and I forget to blog. Im sorry 😦

However……things are always going well, until they aren’t. As AOSD sufferers, or as victims? I usually feel like a victim with this horrid disease. Ambushed out of nowhere.

But things go very well for a good amount of time until severe stress affects us. That’s the crazy thing about AOSD, stress can kill us. What a strange concept right. In this world of chaos, financial disappointments, personal relationships that start out fine and end up toxic, learning that friends are not really friends at all, just sorry puppets in a mascaraed, animals that are injured and needing emergency help. And this ridiculous, absurd heat of 110 🔥 in Arizona and saving a life.

This is stress. Some of it, I can avoid by just using mindfulness, other times mindful gets thrown out the window and my instincts to help activate and my tender heart must help. And in this horrid heat. This combination can kill me.

I slept 14 hours last night. The drenching sweats disgust me. Nothing worse than cold wet sheets, soaked hair and night clothes and shivering to a degree of hurting my jaw due to the shaking.

Ive never been the type that can walk by an innocent injured animal and just hope for the best. Nope. I dive in with my whole heart and do everything I can. When friends need help, Im the same way, only to find out afterwards, many times they are a selfish little crumb of a person and I just happened to have a heart and come to their aide. All off this takes a toll on the immune system. I can change this. I must change this to save my life. AOSD can kill. My animals need me. Mindfulness. Mindfulness. Where does it go when I need it most? Practice. Must practice.

The unfortunate thing about this disease is that we never know what the next flare will bring. I can handle the chills, chattering teeth, drenching sweats and fevers, rashes and joint pain. But, along with all this, yet there’s more. Sometimes it attacks the liver, the next time the lungs. One major organ is always affected. Its the heart that scares me the most. If it attacks the heart………..

I need to remove all stress. Yeah, good luck with that. I guess, all I can do, is be more mindful and celebrate each day (without the crazies) and be with nature and be with animals.

So if this flare doesn’t become a full flare and I caught it time, Im going to have a glass of wine and cheer “here’s to you stress! I hope you step on a Lego”

Stay healthy my friends

Claudine

 
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Posted by on August 6, 2019 in Daily Update