I'm really good about the triggers I can avoid... gluten, histamine, sun, heat, exercise, etc...  Unfortunately, right now I'm stuck with a bunch of triggers that I can't do much about!!  It's the end of a very busy semester (I'm a professor), mold and pollen counts are through the roof, we've been having wave after wave of stormy weather, our washing machine needs to be repaired or replaced, and... to top it off... it's that time of the month when I'm extra reactive and I get attacks of severe abdominal pain.

Today the pain hit around 2:00  I took a Lortab and it faded away... I got some grading done.  Around 4:00 it started coming back again.  So... as per my doctor's instructions... I took a second Lortab.  That helped, but around 5:00 I started getting really tired.  Really, REALLY tired.  I had to concentrate on things I usually take for granted... like breathing and staying awake.  UGH!  Around 6:00 I took 50mg of liquid Benadryl and 40mg of emergency prednisone  The pain was coming back and I had maxed out on pain medication.  I probably should have gone to the hospital... I was on the verge of asking one of my colleagues if they could drive me over there    And then thankfully... the pain and the horrible fatigue/dizziness started fading away.  I'm still not quite back to normal, but doing much better than I was.

I was so close to going over the edge!!!!  I wouldn't say I was scared, but oh... some days I really, really wish I could just be normal.  I'm so grateful that I have an appointment coming up with Dr. Castells.  I can really use her advice.

Heather

Yeah... I sure do know what you mean.  Part of it is my fault, because I haven't told my colleagues much about this disorder.  Yesterday I told one of them, "Boy... I really felt like poo last night at dinner!  I probably should have gone to the hospital."  And she said, "Really??  You seemed fine to me.  I couldn't tell that anything was wrong."  

I started telling her about how I'm "allergic to myself," but then the meeting started... and we never made it back to that topic.  When it comes to telling other people about your mast cell disorder, I don't think it matters what kind you have.  They're all complicated to explain!  My colleague asked, "Well can't you do something to make yourself less allergic?"  Good question.  Unfortunately... NO.  If I get really desperate my hematologist has a couple of ideas, but for the most part it's just a matter of preventing/treating the symptoms.  

My colleagues know that I can't eat gluten (no big deal... everybody is on a gluten-free diet these days, right?)... and I've tried to explain the foods that are high in histamine... but that's as far as the conversation ever gets.  They don't know that sunlight makes me exhausted... or flying makes me bleed... or sometimes even just standing up to have a conversation makes me dizzy!  Most people don't have the time or inclination to listen to a long list of CRAZY triggers and symptoms... not even doctors.  I come here when I need people to understand  Still... now that I have job security I really should make an effort with at least one or two of them.  

I'm sorry that you're going through such a rough time, Jill!  Sometimes it's so hard (and frustrating!) to say, "No... I can't do that," especially when you're in a flare and you don't know when/if you'll get back to a more "normal" state.  

Heather

Hi Heather, Sweety... I have one suggestion.. I know our sources of pain are different but i think both of us get worse in pain levels because of the masto--so here is a little trick that helps me.. take a pain pill AND one antihistamine--I find that kicking the masto in the hiny with a med, also lessens my pain level--and it makes it easier to control. Hope this helps

As far as people just not getting it and being so judgemental.. sometimes you have to start at the biggest point for us and say--"I have an incurable , life threatening disease, my immune system is abnormal and may throw me into shock at any time. I realize this may cramp your style, so let me know now and I can always pass on going with you, if its an issue you cant deal with."  I know this sounds rude, but.. their non-comprehension and attitude IS a type of prejudice and they need to see it for what it is, bluntly truthful.

The ones who react positively to what I said--I will give them Kudos and thanks later

Hugs,
Ramona

Jilli, youre singing my song--or should I say OUR song LMAO... Yes, it sure shows who cares and who doesnt --and I have done so many favors for the same people who now refuse me... it gets to me.. and I find myself thinking its time to be selfish and put ME first, cause nobody else does... as rude as it seems.. I have to love me enough to respond in kind to those who truly dont care... time to cut ties with people who take but never give emotional kindness. That is why ALL OF YOU HERE are my best friends, my only true friends, and I love you all so much. And that is, as they say, "The rest of the story." LOL
Love you Hon,
Ramona

Riverwn wrote on 05/02/11 at 04:26:55:

Hey Ramona,

The first thing I tried for this recurring pain was a mixture of Tylenol, Benadryl, and Zantac... it wasn't nearly enough!  That's why I asked for something stronger.  I still take Benadryl during these attacks to keep the nausea at bay, but it doesn't touch the pain.  That's why I'm going to see Dr. Castells... it could be a different type of angioedema like HAE or APD.

Heather

Thanks Ramona  I'm feeling fine right now... I'm in the good part of my monthly cycle!

Heather