Health Update

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This update is a combination of an email I sent on August 14th and some newer info.

There's no way to predict how I'm going to feel from day to day. I can feel pretty good & get some things accomplished one day and then end up spending the entire next day in bed. I hurt so much that I can't sleep on regular beds anymore. I have a queen size temperpedic type pad that I fold in half and put on top of whatever mattress I'm sleeping on. Chairs are not my friends; I have trouble sitting anywhere for any length of time (other than my bed) because of my neck. The now "non-existent"osteoarthritis makes my neck hurt and then I get a bad headache.

My nausea was finally under control with 2 medications but has gotten bad again. Although surprisingly I am able to tolerate the Methotrexate without a problem. For about 2 months I have been having weird stomach pain. By weird I mean that the methods (medication, positioning, etc.) I spent 3 years figuring out and successfully using for about 7 years doesn't work for it. I haven't found a medication that seems to help and instead of lying on my right side with a blanket to put pressure on my stomach, I have to sit up. Sitting up is a real pain though since when it happens, it's usually around 4 am. So I fold up a comforter and pile 2 pillows on top of that. Then I can sit next to it, so I'm sitting up, but still rest my head on my pillow. If I'm not having a severe episode then I can usually end up falling back to sleep.

For about the past 2 months I have also had no interest in food, which is really a pain when you are hungry and NOTHING sounds good. I pretty much live on Instant Breakfast and Ensure. In the evening I try to eat something solid, like a sandwich, so I don't wake up starving at 5 am. I have lost some weight because of this but not as much as you'd expect. The last time I saw the rheumatologist, he said that if I wasn't absorbing protein well then that could be a contributing factor to my fatigue/tiredness. I need to ask him if I should add some kind of protein supplement or if the Instant Breakfast & Ensure are enough.

As far as being tired, they just had me do another sleep study (my first was in 2000). They diagnosed me with RLS (Restless Leg Syndrome) and PLMS (Periodic Leg Movements of Sleep). I have not been able to tolerate Mirapex, Requip, or Stalevo. (For some reason these days I've been having a terrible time with new medications; I end up with horrible side effects! They did put me on iron - I'm not anemic but my levels were too low for someone with RLS. I talked to my rheumatologist about adrenal fatigue and he agreed that I needed to see an endocrinologist. I also need to have all my hormone levels checked again (by the endocrinologist) since we know I used to be low on DHEA and testosterone. I scheduled an appointment but of course they can't see me until February.

If I could ever get the other stuff under control, then I might be able to deal with my mental health stuff - depression, anxiety, social anxiety disorder, etc.

As you can tell I'm just tons of fun these days. Can't stay up late, can't afford to eat out or wear clothes, can't eat beef, pork, etc, can't really drink, can't sleep unless the stars are aligned just right, etc., etc.

All I can say is 12/21/2012.