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Hi my name's Bruce, and MCAD is my middle name. (Read 3002 times)
Bruce Hart
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Oklahoma, USA
Hi my name's Bruce, and MCAD is my middle name.
04/08/13 at 23:16:56
 
My life is completely dominated by this disease. Or so I'm assuming, and hoping that I have an MCAD, otherwise I think I have something currently unknown to medical science. Which is what I thought for over a decade. I came across the controversial multiple chemical sensitivity 10 years before I came across MCADs so never tried to go to the doctor when I was more able because I thought nothing could be done.

For the past 4 years I've been isolated in my grandma's garage with the door leading to the house sealed up airtight. I can't go into the house or  any building, car or outside even when the air is fresh. I have to use a bare toothbrush. I can't tolerate any kind of soap and so have to use a special baking soda that comes in aluminum foil packaging to scrub with outside with a water hose being my shower. Thus I can only take showers during the warm months of the year.

I can't hang out with anyone or my cats. It's really hard to get clothes or covers tolerable for me even when my mom uses unscented laundry detergent exclusively in her washing machine. So I've just had to freeze through winters because I also can't tolerate heaters(smell). And I'm miserable all summer too. I can't tolerate mattresses (smell) so I have to sleep on a hard cement floor with only a thin blanket for cushioning.

Usually within seconds virtually any smell triggers brain fog, pressure behind my ears, irritated & stuffy nose, headaches and pressure in my whole head when it's worse and chest tightness from some triggers  like tobacco smoke. Nearly anything I ingest also gives me GI symptoms. Once ingesting a new supplement triggered behind-the-ear pressure and faintness within 2 seconds, but that's the only time I remember getting faint from a trigger. faintness passed within a few min, but ear pressure lasted for 4 days. My worst reaction caused pressure in my head for 2 weeks and months for my brain to recover. I've joked that an easy way for me to know beforehand if something is a trigger is: if it exists, it's a trigger.

Even at my best I wasn't able to work or go to college much, but the past 4 years have been nearly completely wasted time of me just hoping I'll get better to where I can then start making progress in my life again. I always have brain fog and mental fatigue so I usually can't do anything significant on my computer either.

I'm a little down right now. Can I get the most-disabling-case-you've-ever-heard-of award, or something, to cheer me up? jk
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« Last Edit: 04/09/13 at 20:14:27 by Bruce Hart »  
 
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angelloz
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Re: Hi my name's Bruce, and MCAD is my middle name.
Reply #1 - 04/09/13 at 06:34:57
 
I am so sorry that you are struggling so badly at such a young age. You must get to a mast cell doctor to rule it in or out. Then you can begin a process of hopefully, improvement. Please check out the doctors tab. If you cannot travel at least call them and plead your case. What tests have you had done? A tryptase test done locally would be a starting point.
Give us some more information if you can, medications tried etc...
Hugs, Angelloz
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Bruce Hart
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Oklahoma, USA
Re: Hi my name's Bruce, and MCAD is my middle name.
Reply #2 - 04/09/13 at 09:56:39
 
Hi. Yeah I'm considering going to the doctor for it and try to get some meds for the brain fog. Here's a link to a post I started about it: http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1365506265
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Re: Hi my name's Bruce, and MCAD is my middle name.
Reply #3 - 04/09/13 at 19:37:24
 
Oh it's so horrendous

I can relate to many of the things you are saying and the near homelessness.

Have you read about how some people manage environmental illness and multiple chemical sensitivity? I'm on the MCAS treatment and react to all chemicals/scents and I have to move but can't find anywhere that I can breathe. .....I've found coping skills from the people with EI/MCS have helped me while I experiment to see if these meds help. I also have anaphylaxis if I don't get away from the trigger

It's a brutal existence, but we are alive and I am thankful to be alive. The hard days are intensely horrible and it shows amazing strength that you have found the ways to cope that you have so far
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mikev
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Re: Hi my name's Bruce, and MCAD is my middle name.
Reply #4 - 04/11/13 at 04:58:28
 
bruce:
I'm only an expert on the skin portion of what you said. I wear silk on anything that touches my skin, then microfiber on top of that. Silk holds in your body heat but is light weight. Microfiber is light weight but holds no body temp, so it won't irratate your skin but does nothing to keep you warm. I as well use nothing but unscented detergent & fab softner on my clothes. hope this helps.
mikev
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