I have been feeling stuck recently when it comes to my health. You see for all intents and purposes I have arrived at a stalemate in my battle with Erdheim Chester Disease.
The thing is it may not really be a permanent stalemate so I have to go get a mri or ct scan or fb scan once every 6 months. And so now I survive from one 6th month period to the next each time praying that I'll be granted another 6 months until my next exam.
Meanwhile I am still trying to finish seeing all the doctors that the NIH suggested.
1. I saw the gastroenterologist who grave me a drug called Creon that was supposed to cure my Pancreatic problems but instead has just caused unnecessary side effects. It was like 8 pills a day (for the rest of my life ) and I just decided I wasn't willing to go down that road. So I am trying to maintain my weight more naturally but I just don't have the appetite except for when it comes to frozen yogurt.
2. I have an appointment to see an immunologist in June, but I don't trust he'll see my health issues as anything more then a long term consequence of ECD that I am just gong to have to learn to accept.
3. After that I just have to schedule an appointment with a hematologist.
4. I have an appointment at MSKCC in July (testing me for the B-raf mutation while reviewing my biopsy slides and then having a whole set of scans done) for tests that if confirmed negative will mean I am not eligible to participate in a study at MSKCC that is "curing" people with ECD and the B-raf mutation. Thus ending my hope for a cure (at least currently).
I feel Guilty.
I feel like I should be happy with how well I'm doing but I feel like I'm really just pretending like everything is okay while we all wait for my next health disaster to occur.
This along with all the elements of my real life (as it existed prior to ECD) that draw my time, attention, and energy have left me unable to express my thoughts clearly about how I feel. Tired, Energetic, Blessed, Scared, Tense, Angry, Gracious, and Burnt Out.
My future seems great, it just doesn't feel that way yet.
The thing is it may not really be a permanent stalemate so I have to go get a mri or ct scan or fb scan once every 6 months. And so now I survive from one 6th month period to the next each time praying that I'll be granted another 6 months until my next exam.
Meanwhile I am still trying to finish seeing all the doctors that the NIH suggested.
1. I saw the gastroenterologist who grave me a drug called Creon that was supposed to cure my Pancreatic problems but instead has just caused unnecessary side effects. It was like 8 pills a day (for the rest of my life ) and I just decided I wasn't willing to go down that road. So I am trying to maintain my weight more naturally but I just don't have the appetite except for when it comes to frozen yogurt.
2. I have an appointment to see an immunologist in June, but I don't trust he'll see my health issues as anything more then a long term consequence of ECD that I am just gong to have to learn to accept.
3. After that I just have to schedule an appointment with a hematologist.
4. I have an appointment at MSKCC in July (testing me for the B-raf mutation while reviewing my biopsy slides and then having a whole set of scans done) for tests that if confirmed negative will mean I am not eligible to participate in a study at MSKCC that is "curing" people with ECD and the B-raf mutation. Thus ending my hope for a cure (at least currently).
I feel Guilty.
I feel like I should be happy with how well I'm doing but I feel like I'm really just pretending like everything is okay while we all wait for my next health disaster to occur.
This along with all the elements of my real life (as it existed prior to ECD) that draw my time, attention, and energy have left me unable to express my thoughts clearly about how I feel. Tired, Energetic, Blessed, Scared, Tense, Angry, Gracious, and Burnt Out.
My future seems great, it just doesn't feel that way yet.
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