Update
So yeah, it's been a while.
I haven't been posting here due to the circular sameness of my life. More doctors appointments, more problems, no answers, false hope, the usual. But an update is probably due.
Tomorrow I have an apt. to have my hair chopped off. I hope it is long enough to donate. I guess we'll see. In any case, having it cut off isn't something I want to do, but my thinning hair is so bad now that long hair just makes it look worse. I'm telling myself that it is a control thing and my way of saying F.U. to my body, but really it is just giving up. It's just a step closer to either shaving it all off or using a wig.
I ditched the GP who thought I had the crazies and switched to a nurse practitioner who thinks outside the box. She doesn't think I am crazy (a plus) and is concerned that the c-diff I had a few years back damaged my intestines, so she ordered a lovely stool test to look at possible malabsorption issues, the results of which should be ready in a week. I'm sure she will have me do a detox diet for awhile, but honestly my diet is already so restricted that I just don't care.
A few weeks ago I had an apt. with a neuro opthamologist, as my eyes are seeing double/flashes/palinopsia. I can't read well or look at a computer screen without dimming the brightness, and driving is becoming a problem. He seemed certain it wasn't M.S. based on last year's MRI results, so that was a relief to have been ruled out. Likely more a serotonin problem, which really sucks because I have to go off of what I was taking to see if this eye stuff clears up. However, something tells me it won't, just as everything else gone wrong has stubbornly stuck around. Sorry - but when you've lived with something chronic for a while, the cynicism kind of gets out of control.
As for lab work, rheumatologist #4 wants me back on Plaquenil due to possible Sjogren's disease. There are two blood tests for that - one came back positive and the other negative, of course. I'm holding off on this until the results come back on the digestive system.
So. I'm pretty much in the denial stage. So much has deteriorated in two years that I just cannot cope with this any more. Everything that is happening to my body, I have to passively observe as if it were someone else's. There is no getting "better" unless a miracle happens, and until then I have to accept it and stop fighting it. I hate giving in. I hate it. My days are fairly useless - broken up only by doctors appointments and the nearing rush of incoming private students. I do try to keep up with reading LJ, but to be honest reading about others' functional and productive lives often depresses me, so I can't always handle it and back away.
As for coping, my cats help keep me grounded. When I really want to give up, Jasmine especially gives me "the look", and I can't let her down. I have a personal trainer who I see twice a week who is keeping me in shape at least, and that psychologically helps knowing that I can still work out with everything else going wrong. I've gained weight and am now where I should be weight-wise, so I know that is a good sign. Doing what I can to enjoy this new external body while it internally falls apart. My skin is already changing (like old lady skin- ugh) - so I guess it's good winter is here in a few months and I have an excuse to cover up.
Depressing post is depressing. But, that's why I don't post every day. It would get old pretty fast, I think. I'll try to keep these posts limited to updates here and there, or other topics if they come up.
I haven't been posting here due to the circular sameness of my life. More doctors appointments, more problems, no answers, false hope, the usual. But an update is probably due.
Tomorrow I have an apt. to have my hair chopped off. I hope it is long enough to donate. I guess we'll see. In any case, having it cut off isn't something I want to do, but my thinning hair is so bad now that long hair just makes it look worse. I'm telling myself that it is a control thing and my way of saying F.U. to my body, but really it is just giving up. It's just a step closer to either shaving it all off or using a wig.
I ditched the GP who thought I had the crazies and switched to a nurse practitioner who thinks outside the box. She doesn't think I am crazy (a plus) and is concerned that the c-diff I had a few years back damaged my intestines, so she ordered a lovely stool test to look at possible malabsorption issues, the results of which should be ready in a week. I'm sure she will have me do a detox diet for awhile, but honestly my diet is already so restricted that I just don't care.
A few weeks ago I had an apt. with a neuro opthamologist, as my eyes are seeing double/flashes/palinopsia. I can't read well or look at a computer screen without dimming the brightness, and driving is becoming a problem. He seemed certain it wasn't M.S. based on last year's MRI results, so that was a relief to have been ruled out. Likely more a serotonin problem, which really sucks because I have to go off of what I was taking to see if this eye stuff clears up. However, something tells me it won't, just as everything else gone wrong has stubbornly stuck around. Sorry - but when you've lived with something chronic for a while, the cynicism kind of gets out of control.
As for lab work, rheumatologist #4 wants me back on Plaquenil due to possible Sjogren's disease. There are two blood tests for that - one came back positive and the other negative, of course. I'm holding off on this until the results come back on the digestive system.
So. I'm pretty much in the denial stage. So much has deteriorated in two years that I just cannot cope with this any more. Everything that is happening to my body, I have to passively observe as if it were someone else's. There is no getting "better" unless a miracle happens, and until then I have to accept it and stop fighting it. I hate giving in. I hate it. My days are fairly useless - broken up only by doctors appointments and the nearing rush of incoming private students. I do try to keep up with reading LJ, but to be honest reading about others' functional and productive lives often depresses me, so I can't always handle it and back away.
As for coping, my cats help keep me grounded. When I really want to give up, Jasmine especially gives me "the look", and I can't let her down. I have a personal trainer who I see twice a week who is keeping me in shape at least, and that psychologically helps knowing that I can still work out with everything else going wrong. I've gained weight and am now where I should be weight-wise, so I know that is a good sign. Doing what I can to enjoy this new external body while it internally falls apart. My skin is already changing (like old lady skin- ugh) - so I guess it's good winter is here in a few months and I have an excuse to cover up.
Depressing post is depressing. But, that's why I don't post every day. It would get old pretty fast, I think. I'll try to keep these posts limited to updates here and there, or other topics if they come up.