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Roller coaster living

Jun 22, 2016 3:04 PM

Some days on most days, I feel like I live on a roller coaster.
I find the treatment that seems to work for the new allergy, I'm slowly starting to get better -
And then CRASH!!there's a new allergy, the treatment stops working-and we start over.
How do I find the strength to fight each battle?
How do you trust your doctor when you aren't getting better?
How do you find the strength to go on when your body and emotions are spent?
If you are wondering what triggers this post,i am not responding to my new meds. Give it a few days is what they will tell me-but I am so sick of being sick!!!

Jun 22, 2016 3:21 PM

Hopetobe, it does take time to find the right method of coping, including meds, for all of us; was are all different & so is out treatment. If you are not sure of your doc then maybe a second polonium is in order.

Two years ago my pulmonologist started dealing with allergies & allergy shots. I went through the tests and then started injx. After the 7th one I started feeling worse 3 days post injx, and each injx after that I'd stay sick longer. On the day I was to get the 10th injx I asked to see the doctor, and while trying to explain how each shot seemed to exacerbate my symptoms I suddenly had an asthma attack in front of him. Needless to say he stopped my injx treatments. I then went to my asthma doc who asked to see the test results, and he hit the roof. He said that my allergy levels weren't high enough to receive injx therapy and they could have killed me. He said a pharmaceutical company in AZ was training doc offices to test & treat allergies, in order to use their meds and they weren't training properly. It took him 2-3 months to get me feeling better, but we had to change meds several times. I'm sending (((hugs))) & prayers you will spin begin feeling positive results and feel better! 🙂💕🙏🌼

Jun 22, 2016 3:26 PM

I understand how you feel, personally I've been on my own roller coaster too. It takes time to find the right treatment. Took forever to get my mental meds straight but it did happen. I'm sure it'll take time to figure it out now. I pray you get better

Jun 22, 2016 8:12 PM

I hear you. It's very hard for me to trust doctors and physical therapists as well, considering none have been able to help me. You know your body best. When it comes to health care- find the very best you can, experts in their field. And go with your gut- always

Jun 22, 2016 9:59 PM

Thanks for the support,guys. It means a lot to me.
My doctors are amazing, the best in their field. Unfortunately, I have a disorder that is very recently discovered and untreatable. My allergist, who is one of about 5 doctors in the country who specialize in it,had told me that I am her most complex patient,because I present very weirdly, and don't respond to most standard meds.
My protocols have been made, ripped up,and made again over and over again bec the things that stop me from going to anaphylaxis always stop working after some time. 1 experimental treatment landed me hospitalized for 5 weeks with a heart infection and talk of open heart surgery.
At this point,we don't even have a protocol bed we are all out of options. But I know that despite everything,I will be ok. So thank you for the support do i can pick up and try again. I may never get over this illness, but I will get over today.

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