I have had a "medium" week. Nothing too horrible... and certainly better than being in the hospital yet again the week before last... but just not feeling myself. I have a cold and I think that is setting off a bit of mild metabolic decompensation... I feel weak and am having a lot of muscle pain and dysfunction. My urine dips have been positive for "trace" heme (as a proxy for myoglobin) all week, but haven't gotten more than "trace" so I haven't gone in to get labs checked. My brain feels "foggy" too... I call it "metabolic fog".

So I am just trying to do what I have to do in the moment, from moment to moment, and not dwell on the fact that I am not feeling 100% or ruminate about my body and how much it sucks lately.

I did get a referral to the pain clinic, and finally have an appointment, so I am looking forward to finding better solutions to both my chronic pain and my acute pain that I get with "episodes."

I also heard back from my genetic counselor yesterday that she was able to start the process of getting approval for me to have a fresh muscle biopsy with Dr Shoffner in Atlanta. So hopefully we will find out relatively soon if my insurance company (an HMO) is going to deny me. I really hope not, because both my neuromuscular doc and my metabolic doc said that I really need it.

Also, my PCP and I had the "port" conversation again, and this time he offerred to send me to a surgeon to find out about getting long-term access so I don't need to keep blowing through all of my veins every time I am sick. I kind of chickened out, though, and so for now we are not doing anything about long-term IV access.

Oh, and I finally have my nephrology appointment on Monday (about the metabolic acidosis... proximal renal tubule dysfunction). This is a good thing because I have been waiting to get in there since July, and my bicarb is still low (like 17-18), and metabolic acidosis is one of the few treatable things going on with me right now... except my PCP doesn't feel comfortable managing it himself, and my metabolic/genetics doc doesn't either... nephrology does it all the time, though, so hopefully we will get some headway there... the acidosis and the pain are two things I would really like to have a good plan for by the end of the month.