The weekend I have planned:
Saturday
-Watch movie and make DV vigil ribbons
-Visit the library and get more movies
-Skype with J
-Doll myself up, take photographs with a sign for a friend
-Play with kitties
-Go to Classics By Moonlight concert (classical music outdoors by the light of the full moon!!!)
Sunday
-Browse the newly opened Farmer's Market
-Tidy the house
-Watch movie, make more ribbons if need be, make earrings if not.
-Play with kitties
-Skype with J?
-Call my mom
-Give kitties a bath
The weekend as it will probably go down:
Saturday
-Watch movie, make a few vigil ribbons
-Skype with J
-Doll myself up, take photographs
-Concert
-Hold down couch/bed/pay for the active day
Sunday
-Pay for Saturday
-Play with kitties
-Watch movie
-Hold down couch/bed/continue to pay
Thank the high heavens that my GP gave me a script for pain meds, because even after 3 days in a row of contacting my rheum I never heard back from her. This, after she has told me two visits in a row that if I'm having a hard time in between visits with my pain or going into crisis not to self-medicate but to call her. Hmm. It was going to be a special kind of hell, going into the super busy DV vigil week with all of my speaking engagements and such with no pain killers.
(I was worried about not being able to get it filled, like that whole fiasco I had a couple of months back, but they filled it with no problems and no questions. I hate going for pain pill refills because I always have this horrible feeling (not from anything they do, really, just because) of being a druggie and that they're going to refuse me my meds and I'm going to have to try to eke out an existence without them... and the thought is absolutely horrifying. I think it has to do with my experience with that jerk pharmacist who wouldn't fill my prescription even though he was supposed to. He is the head pharmacist of that place, so he's god apparently... I really dislike him. Clearly.)
Anyway, here's an excerpt from an email I wrote J in the wee hours of the morning. It's nice to know that even delirious from lack of sleep (couldn't sleep 'cause pain and ptsd stuff), I can form intelligent run-on sentences. :)
"But when I visited my general practitioner today, we had a really good conversation. She brought out the connection between my autoimmune diseases and my insufficient adrenals, telling me that the insufficient adrenals makes it harder for me to fight the autoimmune stuff, and also the meds to fight the immune stuff are immune suppressants, and my body has a hard time handling that because it's already deficient in stress-handling materials. Also, she pointed out that my weight gain can partially be attributed to the steroids that I'm on for the adrenals (which I can't get off of, handily enough, or it could make me seeeeriously sick-- I should be getting my medic alert bracelet for adrenal insufficiency, food and adhesive allergies soon!) and the fact that I'm now pretty much completely sedentary due to the pain. The meds have some to do with it, but the sedentary lifestyle is the bigger part. She did make it a point to emphasize that I'm still within healthy BMI limits, just heavier than I was a year ago by 30 lbs. She completely believes me about the autoimmune (and brings it up and points out connections between symptoms at every single appointment), supports me in my decision to switch rheumatologists (she even said that she hopes this new doctor is more aggressive in treating my autoimmune problems because we can't just hang on to an undiagnosed connective tissue disease label forever and call it good, especially since I'm just continuing to decline and not even in a holding pattern), and told me that I've had a special place in her heart ever since she first saw me because I'm so young and suffering from so many different problems.
It really just kills her that I'm in so much pain and so sick at this stage in my life. She travels a lot, so I think she is looking at me and seeing my opportunities for adventure completely disappeared, much less a typical fulfilling life for a twenty-something... you know, a family and work and such. I really enjoy visiting her, because she genuinely cares and really wants to do everything in her power to figure out what's wrong and to help make it right. That's what I want out of a rheumatologist, but I'm not getting. She even said that my symptoms and diseases are beyond her scope of practice, but she'd help me if she could. I wish she could. She was the one who discovered that my titers were elevated ("very high!") and sent me off to the rheum where I got my fibro diagnosis right off the bat. She's been the aggressive tester and treater, and I hardly ever see her. My endocrinologist is a religious tester as well, and I only see her every 2 or 3 months. I get more tests done from these two than I have my entire year with the rheum, and they're supposed to be the ones figuring out what the heck is wrong with me! Shoot, I saw the neurologist all of two times, and he did more tests than the rheum had in the entire year to figure out the problem. Why did I not see this sooner? I guess I just like to assume the best about people, assume that they're working to their utmost capacity... I sure hope this new practice accepts me. They can decline me, after all."
I think that says it all. Very wordily.
Saturday
-Watch movie and make DV vigil ribbons
-Visit the library and get more movies
-Skype with J
-Doll myself up, take photographs with a sign for a friend
-Play with kitties
-Go to Classics By Moonlight concert (classical music outdoors by the light of the full moon!!!)
Sunday
-Browse the newly opened Farmer's Market
-Tidy the house
-Watch movie, make more ribbons if need be, make earrings if not.
-Play with kitties
-Skype with J?
-Call my mom
-Give kitties a bath
The weekend as it will probably go down:
Saturday
-Watch movie, make a few vigil ribbons
-Skype with J
-Doll myself up, take photographs
-Concert
-Hold down couch/bed/pay for the active day
Sunday
-Pay for Saturday
-Play with kitties
-Watch movie
-Hold down couch/bed/continue to pay
Thank the high heavens that my GP gave me a script for pain meds, because even after 3 days in a row of contacting my rheum I never heard back from her. This, after she has told me two visits in a row that if I'm having a hard time in between visits with my pain or going into crisis not to self-medicate but to call her. Hmm. It was going to be a special kind of hell, going into the super busy DV vigil week with all of my speaking engagements and such with no pain killers.
(I was worried about not being able to get it filled, like that whole fiasco I had a couple of months back, but they filled it with no problems and no questions. I hate going for pain pill refills because I always have this horrible feeling (not from anything they do, really, just because) of being a druggie and that they're going to refuse me my meds and I'm going to have to try to eke out an existence without them... and the thought is absolutely horrifying. I think it has to do with my experience with that jerk pharmacist who wouldn't fill my prescription even though he was supposed to. He is the head pharmacist of that place, so he's god apparently... I really dislike him. Clearly.)
Anyway, here's an excerpt from an email I wrote J in the wee hours of the morning. It's nice to know that even delirious from lack of sleep (couldn't sleep 'cause pain and ptsd stuff), I can form intelligent run-on sentences. :)
"But when I visited my general practitioner today, we had a really good conversation. She brought out the connection between my autoimmune diseases and my insufficient adrenals, telling me that the insufficient adrenals makes it harder for me to fight the autoimmune stuff, and also the meds to fight the immune stuff are immune suppressants, and my body has a hard time handling that because it's already deficient in stress-handling materials. Also, she pointed out that my weight gain can partially be attributed to the steroids that I'm on for the adrenals (which I can't get off of, handily enough, or it could make me seeeeriously sick-- I should be getting my medic alert bracelet for adrenal insufficiency, food and adhesive allergies soon!) and the fact that I'm now pretty much completely sedentary due to the pain. The meds have some to do with it, but the sedentary lifestyle is the bigger part. She did make it a point to emphasize that I'm still within healthy BMI limits, just heavier than I was a year ago by 30 lbs. She completely believes me about the autoimmune (and brings it up and points out connections between symptoms at every single appointment), supports me in my decision to switch rheumatologists (she even said that she hopes this new doctor is more aggressive in treating my autoimmune problems because we can't just hang on to an undiagnosed connective tissue disease label forever and call it good, especially since I'm just continuing to decline and not even in a holding pattern), and told me that I've had a special place in her heart ever since she first saw me because I'm so young and suffering from so many different problems.
It really just kills her that I'm in so much pain and so sick at this stage in my life. She travels a lot, so I think she is looking at me and seeing my opportunities for adventure completely disappeared, much less a typical fulfilling life for a twenty-something... you know, a family and work and such. I really enjoy visiting her, because she genuinely cares and really wants to do everything in her power to figure out what's wrong and to help make it right. That's what I want out of a rheumatologist, but I'm not getting. She even said that my symptoms and diseases are beyond her scope of practice, but she'd help me if she could. I wish she could. She was the one who discovered that my titers were elevated ("very high!") and sent me off to the rheum where I got my fibro diagnosis right off the bat. She's been the aggressive tester and treater, and I hardly ever see her. My endocrinologist is a religious tester as well, and I only see her every 2 or 3 months. I get more tests done from these two than I have my entire year with the rheum, and they're supposed to be the ones figuring out what the heck is wrong with me! Shoot, I saw the neurologist all of two times, and he did more tests than the rheum had in the entire year to figure out the problem. Why did I not see this sooner? I guess I just like to assume the best about people, assume that they're working to their utmost capacity... I sure hope this new practice accepts me. They can decline me, after all."
I think that says it all. Very wordily.
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