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.


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.


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Posted by on June 4, 2018 in Daily Update


So much new pain

Something has been changing. I wake up during the night with pain in my right hip, right knee and sometimes left wrist. When I get out of bed in the morning I have such intense pain in my knee, I can barely get down the stairs. I cry. I have so much to do and such a great life I want to keep up with.

I have my beloved horse and it makes me cry that I can’t be the active person I usually am with him. I have my wonderful husband that I love to cook for and go out to dinner with.

Sometimes my right knee is warm to the touch, swollen but not always. My right hip area aches almost constantly. But strangely, most of the pain decreases during the day. I have been going to yoga trying to coax my body into feeling normal and flexible. But this morning after 3 days of yoga class, the pain was worse than ever.

So here I am at urgent care center. My rheumatologist is out of town on vacation. But I haven’t had to visit the office for over 6 years. So, this is why I am wondering and scared about what is going on with my joints. All this pain is very different from AOSD. AOSD flares always started with throat pain, a rash, high fever. I do get a fever around 4am (weird), and severe joint pain upon getting out of bed.

So, here I sit in the waiting room of the urgent care, with a bunch of people who obviously have the flu hoping all these symptoms go away soon so that I can live my wonderful life again .

Wishing you all good health,


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Posted by on February 12, 2018 in Daily Update


Knock, Knock, it’s 7pm….

For the past 2 nights, around 6:45pm I begin to feel very lethargic. It’s not the typical, “Gee, what a long day its been, Im tired!”. It’s more like, as the minutes go by, at 7pm my throat feels like Ive been shouting all day, my body feels so exhausted and my eyes can no longer stay open.  By 7pm, I am cold, wearing a long sleeve shirt, leggings and thick socks and I go to sleep under 3 blankets.

I do not have any teeth chattering, rash, swollen lymph nodes (that I know of), constant headache, abdominal pain in the liver quadrant, frozen joints. Thank goodness. But, the 7pm marker time was the exact time my body used to flare and I would begin to scream out ion pain as my husband and I could see my joints turn tomatoe red and I would start to cough and then vomit. Thank goodness, thank goodness I do not have these symptoms. I pray to never have those again.

The low grade fever and extreme fatigue are worrisome and it is happening at the same time as the pattern that took over my life for years at 7pm.

I dont like 7pm. I feel that anybody with Stills has a clock hour that brings fear and a quick scan of their body for signs. I am hoping to ride this little blip on the health radar out and that it is nothing serious. I will get labs done very soon.

Stay healthy my friends,


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Posted by on July 12, 2017 in Daily Update


The dragon seems to lurk in the shadows. 

Ive had a good amount of energy for quite a while now, a few  years. But for a few days I have felt cold and tired. I push to keep myself doing what I usually do, workout at the gym, visit my horse at the barn, clean the bird fountain, errands, dinner with friends. 

Today the extreme fatigue level started to frighten me. Zero appetite. Today I could not do anything. Fever, joint pain, extreme fatigue and very cold. I put on sweat pants, a sweater and slept under 3 blankets. The fever broke at 3pm. 

Last night we had dinnner with friends, and I ate a burger and the bun. I rarely do this, since I stick to fish and chicken and vegetables. The sweats came on at bedtime, by 11pm, fever, achey wrists. Thank heaven no teeth chattering. I woke up at 7am, fortunately, I was not scheduled to work today. I went back to bed at 10am and slept until 3:30. 

I’ve been having more joint pain lately that I’ve been ignoring. It’s time to get some labs run. It’s time to see what’s going on. 

I know the anti-inflammatory diet works. But cheetos and quesadillas start calling my name and I fall off the anti-inflammatory diet. Today for the 1st time in years I downloaded the IF factor app that I lived by for years. It is time to follow the diet strictly again.  The more positive the food ranks on the list the less inflammation it causes. Negative ranked foods inflame me. I do not want to relapse, ever. I never want to be on high steroids and methotrexate again. 

I will keep you all posted. 
Stay healthy my friends, 



Posted by on July 10, 2017 in Daily Update


Low energy, poor energy, then exhaustion

Ive been working hard around the house, the usual tasks that need to be done around here. My days seem to start off with energy to spare and then the following day I push the boundaries of my endurance. I keep up a non-stop pace again and again and again, until I can’t realily decipher if I am truly fatigued or did I just not eat right the day before. I begin to feel very tired for a few days in a row and I begin to rationalize that perhaps the day before; I didn’t hydrate enough? Maybe my sleep was not thorough the night before? Maybe I worked out the gym too long? Maybe I ate too many carbs? Not enough protien? Need vitamins? More Cheetos? The weather? Until there are no more excuses….only my heard-headed habit of going, going, going until I collapse.

My husband, so caring, so patiently shakes his head. He doesnt know why I have a compulsion to do so much. He simply says “honey, Ive tried to have you slow down for years, but now, I just wait until you come to a painful rolling stop and cry from exhaustion, fever, sweats”.

But in reality, I just dont watch my fatigue level close enough. I push my body to the end limits and then here comes the crash, the exhaustion that leads to 18 hours of sleep and teeth chattering, fever, drenching sweats. I changed my nightshirt twice last night and had to sleep on a towel because my sheets were soaked as well as my pillow case. I have crossed over the line of simply needing to slow down for a few days to complete fatigue, exhaustion.

As the years go by, since my initial flares, I have thought and felt that I am truly fine. But then the “baby dragon”, thank goodness, not a “full grown dragon” creeps into my life to remind me and let me know, “you can always have another flare, maybe bigger, maybe more harsh, maybe permanent, maybe death”.

The peculiar aspect about this fatigue is the rubbery feeling legs. I dont think I have ever written about this before in all of these years writing this personal journal. But the last endurance drop I experienced, I had this feeling also. Maybe Im become more aware of the vague signals I get to stop doing so much.

So today, I rest, sleep, eat, hydrate very well, rest some more sleep and then I rise and shine and greet all of you with an energetic smile.

Stay healthy my friends,


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Posted by on November 11, 2016 in Daily Update


Arizona heat but sometimes I am cold

Arizona gets hot, very hot. We have had many monsoons lately which brings the sweltering heat below 100 on some days. The evenings can still be as high as 95, which has always puzzled me, since most deserts get very cold at night, but I understand that it’s due to the large amount of concrete and buildings. I understand that once a person gets AOSD there is always the probability of a flare again. The 1st few years were the worst of my life, ongoing flares for several years, and then they became less often and less often until lately no huge flares (Thank goodness, praying for ongoing good health). But it is not unusual for me to have strange moments of feeling extremely cold in the evenings, around 7pm when I used to have my flare onset. I take my temperature, no fever. I assess my fatigue level, low. I evaluate my diet, clean and unprocessed. But why do I need to bundle up in sweat pants and a long sleeve shirt and sit outside in the 98 degree weather on the patio to warm up? I end up going to sleep, later in the evening still freezing cold, extra blankets, but no fever really ever breaks. My husband feels it is the Stills remnants. I imagine it as the Stills monster tossing an invisible bucket of ice water on me, to remind me that it’s never really gone. I wake up feeling normal the next day and then it might be a few weeks or even months before this happens again. Oh well….keep calm and be stills free is the goal.
Stay healthy my friends,

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Posted by on August 27, 2016 in Daily Update