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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> Support and Encouragement >> Learning how to explain http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1332726084 Message started by FarmerJane on 03/25/12 at 14:41:24

Title: Learning how to explain
Post by FarmerJane on 03/25/12 at 14:41:24

Less than two weeks ago, I was diagnosed with MCAD. I am having difficulty explaining it to others with getting a "deer in headlights" look. I am sure I am being too scientific, but I am not sure how to simplify it properly.

Tell me what works.

Title: Re: Learning how to explain
Post by Starflower on 03/25/12 at 15:27:21

Yeah... I'm still experimenting with that one ;)

What I tell my co-workers...
"I have a lot of allergies"

What I tell my friends...
"I have an autoimmune disorder that makes me super allergic to lots of things" (more if they're interested)

What I tell my family...
As much as they can stand, focusing on how I feel (nauseated, tired, in pain, dizzy, etc...)

What I tell most doctors...
"I have an anaphylactic disorder triggered by things like heat, sunlight, blood thinners, latex, certain foods, etc..." (followed by as much information as they need/want... which is often not much)

What I told my life insurance company(!)...
"I have a rare disorder called "mast cell activation syndrome." (I figured... let them try to understand what that means!)

The tricky thing is people who cross the colleague/friend divide. I want people to know why I'm tired all the time, have so many food restrictions, take a lot of medication, etc... but I also don't want them to make assumptions or feel afraid/sorry for me :-[

Most people... including most nurses/doctors... have no idea what a mast cell is and will not understand the science behind MCAD. I've learned not to waste my time. The only people I use that term with are mast cell specialists and mast cell patients.

Heather

Title: Re: Learning how to explain
Post by DeborahW, Founder on 03/26/12 at 13:14:28

Oh I think it's pretty easy to explain. I just say that the things that cause allergies are called mast cells. My mast cells are overly sensitive and yet I have no allergies. Thus when my mast cells go crazy, I get sick with various levels of anaphylaxis. Then I explain that all sorts of things trigger my mast cells, including food, temperature, stress, etc. They pretty much grasp it then.

Title: Re: Learning how to explain
Post by PJP123 on 03/26/12 at 14:44:15

I've been saying I have an autoimmune mast cell disorder that makes me tired, unable to breathe, and made me allergic to all foods I used to eat. The response is "Oh I've never heard of that". My response "Neither has my neurologist, cardiologist, neuropsychiatrist, orthopedist, gynocologist, primary care physician, rheumatologist, allergist, dentist, opthamologist". LOL.

I've also said I have a lupus-like syndrome. People understand that.

Title: Re: Learning how to explain
Post by iamnotalone on 03/26/12 at 15:26:29

Star & PJP;
LOL ;D ;D ;D !
I had to have a mammo, then some x-rays. The tech asked me what it was (thought I put it simply) then she said "oh, it's like my husband- he has MS." :o
You guys have some pretty good answers! Think I'll type some out on small cards n keep em in my purse for just such occaisions!
:D :D :D
lori

Title: Re: Learning how to explain
Post by Julie M. on 04/03/12 at 03:37:47

Oh, my gosh, too funny PJP!

Great question with great answers! I've been saying that part of my immune system is malfunctioning and reacting to things it shouldn't be, resulting in my getting sick. But, I like these other suggestions so much better! Will definitely use some of these ideas.

I find the worse part of explaining MCAS (to whomever) is that I hear myself talking and I think the listener must think I sound like Charlie Brown's teacher...WHA, WHA, WHA.... :-?

Julie

Title: Re: Learning how to explain
Post by Starflower on 04/03/12 at 17:14:33

Seriously! I get that impression a lot too. ::)

Heather

Title: Re: Learning how to explain
Post by FarmerJane on 04/05/12 at 04:07:52

I think I'm sticking to this one which sometimes brings a smile and lessens the intensity of the situation a little.

Some of my cells get really pissed off and they start a fight inside me. Sometimes I win and sometimes I loose. My EpiPen is my light saber.

Title: Re: Learning how to explain
Post by Enko on 04/06/12 at 04:39:28

F.J., I love the explanation with light saber ;D

Title: Re: Learning how to explain
Post by lynda51 on 04/22/12 at 10:16:49

Thanks to ALL of you, I declare this: "I CAN'T STOP LAUGHING DAY!!" ;D ;D ;D

What an awesome group.... :)

Title: Re: Learning how to explain
Post by mikev on 04/23/12 at 06:30:20

I had this happen this weekend with a tennis friend that I ran into. He said he heard that I had something strange, so I started to explain & I got the dreaded blank stare, which I knew would be followed by the "but you look the picture of health" line that makes me want to cry, so I just quickly turned to, I wore my feet out from so much tennis & that worked fine, as he said that he was at the same place with his knees. I agree with Heather on dividing people down, but with my work people I've settled for being the kooky hypo that they are comfortable with. My doc no longer asks me anything but what is my new plan for meds for the next 6 months as he knows but won't admit that I now know more about my masto than he does. Love the funny lines you all came up with
MikeV

Title: Re: Learning how to explain
Post by WendyH on 05/13/12 at 08:14:43

I really love the lines that ya'll tell people when trying to explain masto. My last oncologist at MD Anderson said its are very rare form of Leukemia. So when I tell someone I have ASM and I get the blank stare I just tell them that. It really stinks when you go to the ER and have to explain it all to the doctors and they have no clue what your talking about and you end up telling them how to treat you. My husband had a argue w/an ER doc because the doc didn't believe I was having a severe anaphylaxis because I could still breathe. Jeesh. Some nurses have no clue either. One time after my bmb and aspirate at MD Anderson I woke up w/a reaction to fentynal and prophynol they give you to knock you out, My husband argued wj/the nurse to give me epi and when she said it wasn't anaphylaxis (again) because I could breathe he broke out the bottle of liquid benedryl from my bag, the nurse called my Oncologist who was upstairs and he confirmed it was anaphylaxis and she had to give me the epi pen. the doc told me later that they were going to have a meeting with nurses and explain that even though you can breath does not mean its not anaphylaxis for masto patients.

Title: Re: Learning how to explain
Post by Lisa on 05/19/12 at 13:21:15

When people ask me about my illness I tell them that I have a rare disease which has made me horribly allergic. So, this people get without too much difficulty.

The tough people to explain this to are the nurses and doctors who ask me, What are you allergic to? I have always given a long sigh and then said, nothing and yet everything and then tried to reel off the things, cause these things are usually asked for when I'm hospitalized to do a procedure or something of the sort.

Well, the other day I had a doctor ask me, Lisa, what are you allergic to?

LIFE! Doctor, I'm allergic to LIFE!!!

Her eyes bugged out like this as she digested the full meaning of what I was saying. Then they bugged even further when I told her that I had tested negative to allergy testing!

Title: Re: Learning how to explain
Post by iamnotalone on 05/20/12 at 10:52:47

OH Lisa;
I'm laughing & crying at the same time ! You know my "issue" right now... Well this morning, we discovered someone had hit our beloved "outside"cat-Spanky. My son was coming home from a 12hr. shift & saw him. We were digging as hole in 90* weather. I remembered your 5lb. rule- n told my son to make a bigger hole under our statue of the BVMary- m thro my butt in w/Spanky if anything "happened". I thought the very same thing- LIFE HAPPENS. We have to treat everyone, and every day as though it's our last. I'm tryin.Meanwhile, I'm still workin on being kind to the people that think I'm "catching"....
lori

Title: Re: Learning how to explain
Post by Lisa on 05/20/12 at 16:12:23

Lori, I don´t think you quite see the OPPORTUNITY you have on your hands, sweety! If you´ve got people who are shying away from you cause they´re afraid they´re going to "CATCH IT" well, hey, why would you wish to DISCOURAGE them?! :-?

Face, it sweety, THOSE kinds of people you really DON'T want hanging about bothering you anyway. LET THEM THINK THEY CAN "CATCH IT" :o Then they WON'T WANT to come around and will LEAVE YOU IN PEACE!!! :D ;D

Remember - MAKE LEMONAIDE and be the one who's laughing your head off ;D while they're scratching theirs! :-?

ENJOY! 8-)

Title: Re: Learning how to explain
Post by Lisa on 05/20/12 at 16:23:43

BTW - Sorry about the kitty!! Not a pleasant task, I'm afraid.

Good job on the weight limit!!! Keep the good work up!!!

You know, Lori, when we really take a really good look at this disease and all it can do to us, it really is not one of those horrible diseases that we could have gotten!! I think that so very often we humans are so weak and we are always feeling so sorry for ourselves. Although I live in a really great part of Brazil, I've still seen some people who live in real hardship and now that I find myself wandering the hospitals running after doctors, when I look about me I can see many people who are facing some real hardships as far as illness goes!! Just when I'm wanting to feel sorry for myself, somehow I always see or find someone who REALLY is going through difficulties and I can't help but feel so relieved and grateful that it's not me wearing that pair of shoes!!!

I know that my living in Brazil doesn't make it an exception and that true hardship is only found here - I'm not stupid! It doesn't matter where on this earth we live, there is hardship everywhere in some form or another and when I look at my own life, I feel GRATEFUL that I have so much and that I was so fortunate not to have some really horrendous crippling disease!! It sure cuts my pitty party really short!! I've become an incredible fan of Steven Hawking for there is a man who even though he was faced with an incredibly horrible disease, he's not allowed it to affect his love for life and determination to make the very best of what he has available to him and who he is as a person!!! Oh how I wish I had half the courage that man has for he's got to be perhaps the bravest man I've ever seen!! He inspires me to continue pushing harder for if he could do all that he does with such an imprisoned life, then I've got TONS I can do with this horrendously allergic body!!! It's just allergies, after all! I think I can live with it, don't you ?!!! :)

HUGS!

Title: Re: Learning how to explain
Post by iamnotalone on 05/21/12 at 04:55:53

Lisa;
Thank you.
Well put about the "pity party" too. There is a fine line between knowing when people ask about our masto, if they're just being polite-or genuinely curious. :-/ I feel we need to let people know (especially healthcare professionals) so they become more aware.
I also show family & friends pictures of my flares when they ask. They get that horrified/pitying look on their faces ::) I don't Want that. I explain that I dont want Them to be offended when I can't commit to things, &/or have to cancel out on them. :-[ My physical therapist took the time to look it up & I am so proud of him , for he thought it was "really interesting" ! :D My dentist has also researched it, & he may never have another patient with masto, but who knows... :-? I always end my "informative" explanations with "There a lot of people who are Much worse off than I am!" :( I am blessed to have the life I have & the people, (well Most of em) ;) in it.
lori

Title: Re: Learning how to explain
Post by kimtg68 on 05/21/12 at 14:12:54

I still can't get DH to undrrstand this stuff. We've had some more major house projects that I've tried SO hard to help out with. Never mind JUST the MCAS issues but a torn hip labrel, carpel tunnel in both wrists, tennis AND golfers elbow on both elbows.I started out gun ho and felt better then I had in a long time........UNTIL I crashed. He thinks because I was doing so good staying busy working that that is the key. SIGH! He said its more like the reality of how life is anyway. So frustrating.

I really enjoyed the many answers you all gave. Thanks!

Title: Re: Learning how to explain
Post by Lisa on 05/23/12 at 15:54:51

Kim, when it comes to differences between men and women when we get sick, I REALLY think that the men are MUCH, MUCH SMARTER than we are.

We are the stupid ones who try to show how TOUGH we are! And the way that women have been told that they can do anything a man can do, I honestly think that we are out and out mental retards for WE ARE NOT EQUALS and WE CAN NOT DO IT ALL!!!!!!!!

I am NOT superwoman and never was. My body is different from a man´s and I don´ve have the strength and stamina a man does and never did, even without the masto. Well, now that it´s out and active, I´ve EVEN LESS RESISTANCE THAN EVER!!!

And yet, we´re the dodo´s who PUSH ourselves BEYOND OUT LIMITS and HIDE IT because we´re afraid of being weaker as though it meant we were INFERIOR!! Somehow this is the Feminism Movement gone awry, for although we´ve been fed this stuff since the early 60s, for the majority of us, this is almost our entire lives now, we feel GUILTY for not being able to do it all!!

THIS IS SO, SO, VERY WRONG!!!!!! >:(

Men are MUCH smarter than we are for when they are sick, they ARE SICK and they will call it quits and do nothing for as long as they need to in order to recuperate. Granted, you have exceptions to both how the women are and the men, but I´m talking generalities here, not specifics. Men, on the whole, will play patient whereas we women play MARTYRE and we will PUSH OURSELVES just to make sure that we´re not seen to be lying about in bed, for we correlate sickness as WEAKNESS.

Yes, I´m being a bit hard on us women, but I can remember when my mom would get the flu. It wasn´t often and I can´t say how many times she must have felt awful with a cold or an infection of some kind and she never talked about it and would push her way through it and make meals, etc. I´m not talking about this, for I too have pushed my way through 3 c-sections and colds and odd viruses with my 3 children depending on me. However, I´m talking about when we´re in a bad situation, not just the stupid reactings. I can remember my Dad taking over every now and again and my mom absolutely prostrate in the bed from having a bad flu or so. My Dad would put their bedroom as off limits, would jump down our throats if we made a noise above 1 decimal, and prohibited any kind of activity which might wake her or disturb her, including open rebellion against his cooking! :P The entire household would walk on tip toe for fear of disturbing my mom and we wouldn´t see or hear from her as long as Dad was around to stand guard! And she would respect her sickness and stay in bed!

I think they had a much better idea of how to deal with illness than we do now in that neither sex considered women as Iron Ladies, invincible and strong. If you were sick, you were sick and that was all there was to it. You did what you could, but if you couldn´t there wasn´t a guilt trip that either you or your partner put on you.

So, Kim, I know how you think and feel for I too do this very same self-defeating behavior! :( When I had to go into my hysterectomy 5 years ago, I had made the decision then that I was not going to do what I did with my 3 c-sections, but I was going to play the proper patient and NOT PUSH MYSELF!!!!! I´ve tried very hard ever since to follow this very same decision with my subsequent surgeries. Interesting is that with my open heart surgery, a surgery that really requires that very attitude, I couldn´t not push myself. Circumstances kept forcing me to disobey this decision and go in to work for brief periods, but for the most part I did respect it. Yet, with that surgery, the recovery is a long process and it took a full 18 months to really say I was recovered and back up to my pre-surgical strength. And having to push myself became a necessity in order to recoup that strength - babying myself would have been detrimental.

So, balance and common sense must rule.

But Kim, every now and again you need to remind your husband as well as yourself that YOU ARE SICK and living with an incurable disease. And you need to say it very seriously so that this hits home, for unless you do, they will never really get it, and neither will you, and that can be dangerous.

TAKE GOOD CARE OF YOURSELF - YOU ARE ALL YOU´VE GOT!!

Hugs!

Lisa

Title: Re: Learning how to explain
Post by ruth on 05/23/12 at 20:02:03

Agree wholeheartedly Lisa, with or without illness issues. One of my favorite (post-feminist) quotes is

"I can do anything but I can't do everything"

Title: Re: Learning how to explain
Post by kimtg68 on 05/25/12 at 03:01:34

Lisa thank you for the 'mom talk'. I NEEDED THAT. You are absolutely correct on so many levels. I don't remind him, or myself, that I'm sick. I do just the opposite and push and pretend often that I'm still that healthy hard working gal I used to be.
On a positive note, we are going to his sisters house this weekend for a cookout. They keep their house quite warm. He specifically asked them to turn there AC down for me so if I get over heated outside (temps expected in the 90's) I can go inside to cool off. WOW! He truly shocked me. I was honest with him and told him how shocked I was because it seems like he disregards so much of the things I do, can't do, react to and avoid. He clarified for me that he knows how the heat affects me because he can see me turn purple! I believe this is the first time he has ever acknowledged my illness.
ANYWAY, thanks again.