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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> A little venting about triggers http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1304042841 Message started by Starflower on 04/28/11 at 15:07:21

Title: A little venting about triggers
Post by Starflower on 04/28/11 at 15:07:21

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

Title: Re: A little venting about triggers
Post by jbean on 04/30/11 at 02:34:49

Hey Heather. I know how you feel. I'm having a "blowout" here too, and it is getting me down as well. I wish I could be "normal' too. This whole thing can be a discouraging mess at times. It's so "up" and "down", and sometimes the stupidist thing will set you off.

What I am having a hard time with is the lack of understanding I am getting from others. They don't get it when you tell them you are reacting to something. Everybody thinks your being melodramatic. They don't get it that you really ARE having a reaction and have to do something ASAP. I'm finding really it really hard to get that message to some of my friends. We will be out on the town somewhere, and we go in some place, and I know right away somebody has heavy perfume on or something, so I say I can't sit in a certain spot. Then I get "the look" like I am some kind of paranoid baby or something. It gets to me because I am a really tolerant person of other's limitations, and it would be nice to get a little bit of that coming back at me once and awhile. The lack of compassion is a real eye-opener, if you know what I mean.

Title: Re: A little venting about triggers
Post by Starflower on 04/30/11 at 03:11:38

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

Title: Re: A little venting about triggers
Post by Susan on 04/30/11 at 06:50:52

Heather, I think you are right, people don't have time to listen to all the symptoms. But I also think some people find it very threatening to try to get it that someone who doesn't look any different than them has such a hard time.

It is so mysterious, and what if something like that happens to them? Then the rationalizing kicks in to protect them, and they figure it is just because you are weak, or whiny, and THEY are strong, so they are safe from this. maybe somehow you deserve this, because you aren't tough enough, or strong enough, or good enough. It lets them push away the thought of how vulnerable the body (their body!) can be. I don't think this is a conscious decision by most people, but that doesn't matter as to how they respond to you.

I find even people who are mostly compassionate get tired of finding how rarely I can honestly say that I feel well. And if you ever say you are doing a bit better on a certain day, they jump on it as you are cured, and they no longer have to worry about how you are reacting to things.

Title: Re: A little venting about triggers
Post by Riverwn on 05/02/11 at 04:26:55

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

Title: Re: A little venting about triggers
Post by jbean on 05/02/11 at 07:04:40

I have to say that having a chronic condition like this has a way of ferreting out a lot of hidden "attitudes." My recent round of difficulty has been a real eye opener to me as to who is really in my corner.

As I didn't want to stay by myself at night when I was shocking, I asked a few of my friends (who didn't have family obligations) if I could maybe stay over at there house for a night immediatly following my hospitalization. I was actually surprised by the number of people, who I thought I knew really well, who refused. I also got refusals from immediate family members. Now in all honestly, any one of these people, I would have helped without hesitation, and HAVE helped without hesitation in the past. I must admit to having felt very "dumped" because I had a medical problem. It really emphasized to me how easy it is for people with medical problems to be "thrown under the train" and fall through the cracks. I must admit to feeling very disappointed in some of the people closest to me right now. I am truly awestruck at their lack of compassion and coldness.

Hate to say it, but it taught me who my friends were.

Title: Re: A little venting about triggers
Post by Riverwn on 05/02/11 at 07:12:13

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

Title: Re: A little venting about triggers
Post by Lisa on 05/02/11 at 12:28:41

Yes, Jilly, it is a horrible slap in the face we experience when our supposedly closest friends and even family turn their backs on us! This is why so many people find that those people who are of their own religious faith are more "family" to them than their own family! I know you have a church you attend to, my friend, and it's to them I hope you can turn to. Yet, as a Pastor's wife, I also know that even those people will also turn their backs and this is when it is saddest!!! Unfortunately too many people are incredibly SELFISH and they don't know it - they are blind to how selfish they are and they never realize how hard it is to be in such need until they find themselves in need as well!!! Then they complain without realize that they should be including themselves in their complaints!

Yet, my friend, you will have those who will surprise you, people who will reach out to you whom you never expected and through this you will find people who REALLY care - invest in those people!!!

I'll be praying for you Jill, that you will have people who will come to your aide and support!!!

Sorry I can't be there to help, but I'm here praying for you sweety!!
:-*

Lisa

Title: Re: A little venting about triggers
Post by Starflower on 05/03/11 at 15:07:15

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

Title: Re: A little venting about triggers
Post by Riverwn on 05/05/11 at 16:26:43

Hi Heather :)
I do think you need something else for pain. I dont think our antihistamines alone will cut it.. I just think it helps to take both, to try to hit at the cause of the pain if our mast cells are involved with it. Im sending good thoughts you way Hon and I hope you feel better soon.
Hugs and love
me

Title: Re: A little venting about triggers
Post by Starflower on 05/06/11 at 00:36:41

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

Heather