Hey everyone!
I’m still alive! Soon I will have been on steroids for an entire year and have had anaphylaxis so many times I think I have lost count. I have regained half the weight I have lost from the DS and having serious side effects from the steroids. Prednisone stopped working in August (?) so now I am on Dexamethasone and the weight really packed on and so did a whole bunch of other side effects. I had to stop vitamins again because I was hyper reacting to everything. Now I need to test them out again and see if they’re okay!!!
But I have used my epi pens 8 times this past year and the ERs suck and didn’t know what was wrong with me. I had stroke symptoms and TIA and they didn’t screen me. They also blew out 6 veins once’s and was also supposed to take blood but couldn’t so they just quit and walked out!! They told me I could walk out of there because I “wasn’t in imminent death” but I couldn’t talk nor could I walk. They couldn’t even explain why I couldn’t do these things but said this drug (Xolair) had some nasty side effects and I should follow up with my allergy dr and cardiologist. I have a pulmonologist and internal medicine dr too. ENT. I do have a diagnosis though, idiopathic anaphylaxis and so far three treatments have been awful and/or bad. I’m getting treatment from a University because it’s a rare disease and nothing seems to work. Next up is anti rejection drugs for organ transplants.
We had our flooring ripped out because the previous owners had a lot of cats and I was having allergic reactions to the carpet. So we were going to replace the wood floors and tile because they are porous and cat dander can get in it too. They demoed our whole flooring in both levels and found many spots of black mold! One contractor was just going to tile over the wood floors and ceramic tile and that would’ve been bad for me. The black mold would have spread everywhere. I also had pneumonia twice and was stung by a Yellowjacket. I wish I could ash in on my unluckiness!
I’m still weak and sick. My kids are both in school now, the boy is 17 and the girl is five. These poor kids have had to learn how to administer epi pens and have watched me stop breathing and this is not the life I wanted for them. But I have family here and so much support! I asked for help and people helped me! I’m depressed and anxious as hell and these near death experiences have been traumatic on all of us. I keep hoping that I’ll be able to wean off steroids and lose this weight but the DS will still work for me. In the mean time, the puffiness from anaphylaxis and steroids has made my face have NO WRINKLES! That’s right, I could die at any time but my face is nice and smooth at 48!
I’m still alive! Soon I will have been on steroids for an entire year and have had anaphylaxis so many times I think I have lost count. I have regained half the weight I have lost from the DS and having serious side effects from the steroids. Prednisone stopped working in August (?) so now I am on Dexamethasone and the weight really packed on and so did a whole bunch of other side effects. I had to stop vitamins again because I was hyper reacting to everything. Now I need to test them out again and see if they’re okay!!!
But I have used my epi pens 8 times this past year and the ERs suck and didn’t know what was wrong with me. I had stroke symptoms and TIA and they didn’t screen me. They also blew out 6 veins once’s and was also supposed to take blood but couldn’t so they just quit and walked out!! They told me I could walk out of there because I “wasn’t in imminent death” but I couldn’t talk nor could I walk. They couldn’t even explain why I couldn’t do these things but said this drug (Xolair) had some nasty side effects and I should follow up with my allergy dr and cardiologist. I have a pulmonologist and internal medicine dr too. ENT. I do have a diagnosis though, idiopathic anaphylaxis and so far three treatments have been awful and/or bad. I’m getting treatment from a University because it’s a rare disease and nothing seems to work. Next up is anti rejection drugs for organ transplants.
We had our flooring ripped out because the previous owners had a lot of cats and I was having allergic reactions to the carpet. So we were going to replace the wood floors and tile because they are porous and cat dander can get in it too. They demoed our whole flooring in both levels and found many spots of black mold! One contractor was just going to tile over the wood floors and ceramic tile and that would’ve been bad for me. The black mold would have spread everywhere. I also had pneumonia twice and was stung by a Yellowjacket. I wish I could ash in on my unluckiness!
I’m still weak and sick. My kids are both in school now, the boy is 17 and the girl is five. These poor kids have had to learn how to administer epi pens and have watched me stop breathing and this is not the life I wanted for them. But I have family here and so much support! I asked for help and people helped me! I’m depressed and anxious as hell and these near death experiences have been traumatic on all of us. I keep hoping that I’ll be able to wean off steroids and lose this weight but the DS will still work for me. In the mean time, the puffiness from anaphylaxis and steroids has made my face have NO WRINKLES! That’s right, I could die at any time but my face is nice and smooth at 48!
