Being patient with one's body is hard
Dec. 9th, 2014 05:16 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
alee_grrlWednesday last week was kind of horrid. Things have gotten a little bit better since then. I'm doing my best to hang on and be patient with my body and myself. It is remarkably hard.
So last Wednesday I found out that my new insurance does not cover Ambien at all, not even generic and not even with prior authorization. I paid the ridiculous amount for enough to cover a week in case my PCP had trouble finding a solution. My PCP decided the best solution was to change me to Lunestra. I've been having ridiculous trouble sleeping even with the Ambien, so I'm not sure what I think about the change or if the Lunestra is working. So that was frustrating. Then I discovered new patches of hives on one arm and on my legs. So I called my PCP, who managed to fit me in that afternoon. She gave me another short round of prednisone and expressed concern about the thickened skin and redness still visible on my neck. By this point I had already scheduled an appointment with a dermatologist as suggested by the ER doc.
Today was the appointment with the dermatologist. And it was kind of frustrating. I was basically told that in these sorts of cases the diagnosing doctor is usually right and there wasn't much more information they could provide on the causes of the rash. All they could do was give me a steroid cream to clear up the remaining inflammation on my neck. She did seem to agree with the ER doc that the inflammation and thickening on my neck was photodermatitis (an allergic reaction to sun), which can be caused by the tetracycline and commented that even the tiniest bit of sun exposure can lead to a reaction in some cases. All of my doctors other than my Lyme doc seem to agree that the combination of hives and photodermatitis was most likely a reaction to the tetracycline. My Lyme doc really does not think the tetracycline is the cause since apparently no other patient of his has ever developed an allergy to the medication after having been on it off and on for several years. He wants me to wait until all the rash and yeast symptoms have been gone for at least a week and then talk to my PCP about re-introducing the tetracycline to my system. I'm not sure what to think at this point.
I know that tetracycline is one of his preferred drugs for Lyme treatment, but I'm not at all sure I can endure another round of this misery. I suppose I will keep my follow up appointment with the original treating doctor at my PCP office and ask her what she thinks. My own research shows that tetracycline allergies are rare, but rare does not mean impossible. I'm not sure if there is a blood test that can be done to check for the allergen, nor am I certain that my insurance will cover it if there is. But it might be worth asking about.
I've been trying to remind myself that skin issues can take a while to heal, and that it hasn't really been that long despite feeling like it has been forever. I've also been working on telling myself that none of this means I have done anything wrong or made a mistake in my own care, and that it does not mean that I will be unable to continue treatment for Lyme. It's hard because right now everything feels like a make-or-break issue, which is probably due to grief as well as the physical health issues. I'm incredibly good at being patient and understanding when it's others, but suck at both of those when it is myself.
I did treat myself to lunch out after my appointment, which was kind of nice. And I spent a little bit of time wandering around the local mall (middle of the week before school lets out meant it wasn't unbearably crowded). It was kind of nice to do a bit of window-shopping and just be out of the house for a bit.
So last Wednesday I found out that my new insurance does not cover Ambien at all, not even generic and not even with prior authorization. I paid the ridiculous amount for enough to cover a week in case my PCP had trouble finding a solution. My PCP decided the best solution was to change me to Lunestra. I've been having ridiculous trouble sleeping even with the Ambien, so I'm not sure what I think about the change or if the Lunestra is working. So that was frustrating. Then I discovered new patches of hives on one arm and on my legs. So I called my PCP, who managed to fit me in that afternoon. She gave me another short round of prednisone and expressed concern about the thickened skin and redness still visible on my neck. By this point I had already scheduled an appointment with a dermatologist as suggested by the ER doc.
Today was the appointment with the dermatologist. And it was kind of frustrating. I was basically told that in these sorts of cases the diagnosing doctor is usually right and there wasn't much more information they could provide on the causes of the rash. All they could do was give me a steroid cream to clear up the remaining inflammation on my neck. She did seem to agree with the ER doc that the inflammation and thickening on my neck was photodermatitis (an allergic reaction to sun), which can be caused by the tetracycline and commented that even the tiniest bit of sun exposure can lead to a reaction in some cases. All of my doctors other than my Lyme doc seem to agree that the combination of hives and photodermatitis was most likely a reaction to the tetracycline. My Lyme doc really does not think the tetracycline is the cause since apparently no other patient of his has ever developed an allergy to the medication after having been on it off and on for several years. He wants me to wait until all the rash and yeast symptoms have been gone for at least a week and then talk to my PCP about re-introducing the tetracycline to my system. I'm not sure what to think at this point.
I know that tetracycline is one of his preferred drugs for Lyme treatment, but I'm not at all sure I can endure another round of this misery. I suppose I will keep my follow up appointment with the original treating doctor at my PCP office and ask her what she thinks. My own research shows that tetracycline allergies are rare, but rare does not mean impossible. I'm not sure if there is a blood test that can be done to check for the allergen, nor am I certain that my insurance will cover it if there is. But it might be worth asking about.
I've been trying to remind myself that skin issues can take a while to heal, and that it hasn't really been that long despite feeling like it has been forever. I've also been working on telling myself that none of this means I have done anything wrong or made a mistake in my own care, and that it does not mean that I will be unable to continue treatment for Lyme. It's hard because right now everything feels like a make-or-break issue, which is probably due to grief as well as the physical health issues. I'm incredibly good at being patient and understanding when it's others, but suck at both of those when it is myself.
I did treat myself to lunch out after my appointment, which was kind of nice. And I spent a little bit of time wandering around the local mall (middle of the week before school lets out meant it wasn't unbearably crowded). It was kind of nice to do a bit of window-shopping and just be out of the house for a bit.
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Date: 2014-12-10 06:59 pm (UTC)*sending all the good vibes*
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Date: 2014-12-14 05:58 am (UTC)*hugs*
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Date: 2014-12-14 04:04 pm (UTC)*hugs back*