Welcome to the group!

Taking some time off is an excellent idea... you already know that

Having you shock at work... especially if it's due to an environmental sensitivity... is a major liability for your employer.  Hopefully HR will understand this and move you without a hassle.  If not... you should seriously think about looking for a different job.  I know this is easier said than done (especially in this economy), but isn't it better to work than go on disability?  Going through severe anaphylaxis three times in one month is very hard on your body.  

And definitely... do increase your medications!  We're lucky that our basic treatments are so safe.  Antihistamines are not addictive and rarely cause dangerous side effects.  Ditto for Gastrocrom.

Heather

Oh Hon, Im so glad youre here!! You found the right place. Asking for time off work doesnt come under the heading of SSD or SSI but it sounds like you already have that covered with your work insurance and plan.. You DO need some time off for your body to reset and relax again--ask for it.

The next think is this, I dont know all meds yyou are on but.. it isnt enough.. or you wouldnt be trying to shock like you are continually. Im a shocker and a leaker too.. been there done that LOL...

You need both H1 and H2 antihistamines twice a day. You need mast cell stabilizers like Ketotifen and Gastrocrom too. You need a "rescue" drug(s) for when you start to go into shock, like Benadryl or Vistaril. (besides your epi pen).  I know you are afraid to take too many meds but remember this--our bodies NEED wayyyy higher levels than most people do--and what is more dangerous to you? Going into shock OR being a bit sleepy?  

We're here to help you wade through all this. No.. go read the list of foods high in histamines--and for now, keep to it like a bible.. you can test foods later when you are more stable.

Start a diary--Food/activity/how you feel, to start figuring out all your triggers--that is a longggg process and this is very important to do.

Also I ant you to start a "work" diary all about how this disorder affects your life on a day to day basis--no matter how small the symptom. It will help you TREMENDOUSLY when you finally file for Disability.

OK enough for one day LOL Ask anything, we here to help!!
Hugs,
Ramona

Good girl!! and YES, UTIs are often a reason I trigger!! Keep track of those religiously--I hate to say it but the are often caused by mast cells not an infection.. what were the results of the urine test?? if it came back with leukocytes, no or few bacteria then youre heading toards IC (Intersticial Cystitis). That diagnosis alone is reason to get Disability.. ok now I want you to keep another diary--one for UTIs or symptoms of them.. that helped me get disability. I'll give you an example of what I did soon.

Be careful with the Cipro.. I react to it--most masto people need 3rd generation antibiotics, remember to tell your doctor that. I can take Cipro BUT.. I take a smaller dose and add an extra antihistamine when I take it... You cant ignore the UTI but you dont want to react either--I know how it is!

Hope you feel better soon
Hugs,
Ramona

Okay so I started Cipro on Wed and reacted on Fri morning. Now it's another big dose of steriods for a week and added Bendryl.  I only took the Cipro for two days so I know the uti is still there. Plus, I am still uti symptomatic. Now I don't know what to do. What are 3rd generation antibiotics? If masto is often a cause for uti's, is there some precautionary steps to ensure these do not happen. As I understand, cranberry juice is out.

Well my dr. said it was a UTI and I thought cranberry juice was high in histimine. Maybe I misread the histimine food list. I'll recheck. I am worried about it being more than a uti such as IC.

We are all so different--as we are the same on many things too.. I went into shock after drinking craberry juice last year--it as the final straw in "filling my barrel to overflowing" and I crashed.. maybe it has to do with the brand I was drinking Ocean Spray cranberry Blueberry--it looked soo good on the commercials LOL.. so I cant drink it either. I drink water, over crushed ice ith a small slice of lemon when I have a UTI.. I dont get them that often now--I recognize them as IC... (few or no bacteria on the lab result)...

IC is after youve been through bouts of diarrhea (which makes mast cells buzz around and migrate to the bladder--it only takes 3 days for that to happen). IC feels like the commercials you see about over active bladders... except ours is caused by mast cells in the bladder. You have urgency, frequency, pain in the bladder, bloating and spasms. I take Vistaril and Ditropan for it and it has helped me soooo miuch! The Vistaril is the best for it--I like to troll NIH website and read their research and found it on their site, what they were using for it.  It just about changed me from LIVING next to the bathroom to being much more normal life style again... from 20 to 30 bladder spasms a day down to 1 or 2 and some days ZERO!

Hope this helps
Ramona

Is there any stats on how many masto patients go on disability? And, once on disability, do masto patients find that they can get on a good healing path so they eventually get off disability. I'm a shocker and have been off work for the past two months on and off. I'm not sure where this flare is taking me as I cannot seem to shake it but I love working. Right now I cannot work but I don't see this (hopefully) being a forever thing.  I'm also not sure how to navigate the work thing.  They think your nuts when you tell them your having anaphylactic reactions but you don't know what to. I'm know they think I'm lying. I'm so grateful to have a dx from Mayo so at least they know I have been to one of the most respectable hospitals in the U.S.

Thanks for the feedback. I know it's one day at a time which is hard for the planner/organizer in me. I tend to think 6-12 months out. For example, I have another site open right now where I'm planning my July/Aug camping trips because "of course my mcad is going to be completely under control" lol.