Realizing Still’s is still here

I have been feeling really good. I mean really, really healthy. I even started going to the gym, working out 20 minutes on the elliptical machine, 20 minutes with weights and walking on the treadmill almost daily. My parents came up to visit from Tucson yesterday and look for a home. I looked forward to the visit, to see them. They are so caring and wonderful. We met the Realtor at my place and then went to look at homes. We returned to my place, a few hours later, and then my mother and I went to go run some errands, buy some frames for the new paintings I finished, buy some varnish for some clay charms I’m submitting in a art magazine show and then to the grocery store for some vegetables and vitamins. When we returned to my place, I felt tired from the day. My parents could tell I did not feel well and suggested I go take a nap, which desperately needed. I only had 20 minutes to sleep since we had dinner reservations in an hour. I fell asleep quickly.

The disturbing thing is I realized I am not 100% if I can not get through an entire day without fatigue or sickness. After we had dinner, I felt extremely fatigued, the restaurant was noisy, I could barely hear what our table was talking about, my stomach felt queasy after eating a few bites of fish and mashed potatoes. We left the restaurant and I drove my parents car to the hotel so that they could check in and continue looking for homes the next day. But on the way to the hotel I felt nauseous, tired and weak. Right as soon as we parked I went into the ladies room and got very sick. I threw-up twice. I started to cry because I knew I had over-whelmed my body today.

It is confusing to me to feel so well, so healthy for days on end and then attempt a full day of tasks and errands only to find out that my endurance is still so poor. I am not aware until, my husband brings it to my attention that I am at home most of the day, sitting in my art room working on my art, perhaps going to the grocery store and then several hours later I may go to the gym for 45 minutes. And this entails my day. I do not realize, I guess, that there are many hours I am sitting doing my art, and most of my day is not filled with constant walking or demands.

I have it brought to my attention by family that it has been only 30 days since I have been feeling well. It was not until December 22nd that the medication took effect and my daily vomiting, horrible body rash, nightly, swollen glands, fevers to 103, excruciating muscle pains and joints red and swollen have left my body. I was reminded yesterday that when I squatted down to pick up some things that I dropped on the floor how weak my quadraceps muscles are. I could not stand up without the help of holding on the counter and pulling myself up. I felt like an old feeble lady. My legs muscles are very poor still.

I am going to be having blood tests very soon to monitor my methotrexate levels and medrol levels, and ferritin levels as well as other chemistry. I wonder where my ferritin level is? I hope it is back to normal


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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.

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