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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,

Claudine

 
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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,

Claudine

 
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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, 

Claudine 

 
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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,

Claudine

 
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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,
Claudine

 
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Posted by on August 27, 2016 in Daily Update

 

Compassion on high alert

I worked at the hospital yesterday. It is not uncommon for me to spend extra time motivating and gently encouraging py patients to participate in therapy. I have found through my many years of being an occupational therapist, that a automatically decline to participate with a therapist has much more to do than just a complaint of “being tired”, or angry at their situation, or regret, or pain, or many other reasons. Sometimes, it can also be all of these reasons at once too.

My patient yesterday, declined to work with me. This is when I gently ask if there is anything I can get her, perhaps the nurse to medicate, some water (if they are allowed), positioning their arms or legs more comfotably? Since many of my patients are trauma patients or severe illlness in ICU or neurology floors, they often can not move themsleves independantly.

This patient seemed calm, quiet, but she simply declined. I offered to help her get to the side of the bed, ‘for a chance to look around in a new position, upright’. She had extensive surgery in her lower body area, which made it very painful and difficult to sit upright without a lot of assistance, but I slowly gained her trust and we began to move, slowly moving her legs the edge, then lifting her torso, supporting her shoulders. After 20 minutes to get to sitting. She sighed and began to cry. I asked why she was crying. She told me that she had been refusing to work with therapists because she felt rushed and hurried and embarrased of her extensive surgery area around her buttocks and inner thigh area due to severe infection, a flesh eating bacteria.

I had her sit upright, slightly shifting left and right to reduce pressure and decrease pain. She did well. She tolerated 10 minutes sitting upright. The best thing of this session, she found courage to try, now she will feel more confident to keep trying. She was so thankful and appreciative.

Having been on the other side of the hospital bed rails, as my patients are, has hightened my level of compassion to a level that somebody who has never been hospitalized. Every time I work my compassion is always on high alert.

Stay healthy my friends,

Claudine

 
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Posted by on October 25, 2015 in Daily Update

 

Everythings fine…..until it’s not

Pompous. Yup, that’s a good word for the day. Well, actually that was the word of the day last Wednesday (july 22nd)  when I decided, “Everything is going so well, I don’t need these STINKIN’ methotrexate pills any longer!!!” I’m done!!!!!!” I have felt fine for so long that I truly felt that I could stop taking the medication. And I felt great, for several days. I mean seriously, since I had tapered down to only measily, miniscule, tiny pill, how much was it doing anyways? It was a superstitious dose anyways right? I’m not sure that it was doing anything anyways. But…. maybe that is why I was feelling so well the tiny dose was all I needed.

Justifying small signs as, “fatigue”, “out with friends late”,  “maybe dehydrated?”, “mild sore throat for 2 days, probably just a little virus”, ” low appetite…”, “sleeping more, maybe I need rest”.   Until last night…………drenching sweat and cold and freezing goose bumps, teeth chattering. “NOOOOOOO!!!!!!!”.

I changed my night t-shirt and then flipped my damp, cold pillow to the dry side, since I was too tired and cold to change the pillow case last night at 2am. When my husband asked me how I slept, I told him about the drenching sweat and feeling cold. He gave me that look of ,  “I didnt think it was a good idea for you to just stop your pills”.  Every spouse knows that “I TOLD YOU SO” look from the other spouse.

I started the methotrexate again this moring. I am hoping that this is not a slippery slope and will not be able to catch the methotrexate train.  To start getting the signature rash, intense joint pain, voimiting, etc, etc is too much to ever go through again.

I understand there are several types of AOSD. The ‘one time flare’ that never returns, The ‘chronic flare’ that never stops.  And the flare that goes away with medication but keeps returning when even the smallest dose of medication is stopped. This, I understand, is the edition I own. It’s like a book. Yes, it’s been read several times. It’s a stupid book. I can’t stand it.  It’s on the shelf, but it can fall of the bookcase and hit me really hard if I ignore it.

Stay healthy my friends,

Claudine

 
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Posted by on July 27, 2015 in Daily Update