So here is my story.  Since I was 30 (I am 60 now).   There was always something off with my health.  Heart palpitations, bad back, IBS, panic attacks, strangely tired, complete loss of energy, flushing for no reason.  In my  late 40′s/50′s I had to go to the emergency room for turning red and nearly passing out after falling down, having sharp pain, taking penicillin, taking NSAID’s like ibuprofen. And worst of all….. I would get bloated and bad hangover like feelings after a beer or a glass of wine.  Despite all that, I kept fairly active from my 20′s till about age 50 with backpacking, x/c skiing, sailing, bicycling, hiking, raising a family, get a MBA,  running, swimming. working out.

But it got harder and harder to do that stuff.  It seemed like anything that got to be close to being aerobic would make me tired and dizzy.  I remember one day I was biking home from work.  It was a 7 mile ride to the light rail and then to home.  It was about 100F outside.  But when you are riding you don't notice the heat.   But about 3 miles into the trip I felt tired.....then more tired.....then even more.   It got to the point where I could not pedal....I had to pull over, find some shade, and rest.   I was flushed all over too which made no sense.....

So eventually my doctor said “something is not right”.  She sent me to an Allergist who said it could be one of a few things.  Then some tests including a visit to the Cancer Center for a bone marrow biopsy  (that was fun).   All that verified that I had Indolent Systemic Mastocytosis.  

So I got started on antihistamines.....For some reason they really messed me up in the morning.   I had a terrible time feeling tired, dizzy, nauseous.   I finally, after a couple of months, got on a regime of zyrtec and zantac that worked.   That was 5 years ago.   I usually end up in the ER once a year.  Its usually because I could not keep up with a fever and would start to flush badly.   My bad times start with a flush, a worse flush,  then the shakes, followed by nearly passing out along with forceful D and vomiting that won't stop.   When I get to that point only an IV of benedryl gets be out of it.  What I have learned is that keeping up with the symptoms with lots of zyrtec and benedryl will keep me out of the ER.  Also Tylenol and cold baths to keep the temperature down.

I have lost about 20% of the quality of my life.  No alcohol     .   I find it hard to exercise.  My afternoons I feel tired and have some D.    Travel is complicated.  I have found that I need to limit my air travel and pre-medicate a bunch when I do it.    We used to do Home exchanges in other countries.   But the last two times had to cancel at the last moment as I was too unstable.  I have not given up on that one though.   I live in Sacramento where we can have 2 weeks or more weeks over 100F.   That's a killer for me.   If its cool outside I can enjoy the sun but from about 75 F and up...add some sun and I start flaring.  In the shade I can only take up to about 85F.   So during the summer I stay in my AC home, my AC car, and AC stores/restaurants.   We are thinking of moving this year to the Pacific Northwest to get to a more MASTO friendly environment.

So that's about it.  I work half time but will retire this June  

I do a lot of photography for fun and microstocking.  I have a blog on it.  In fact I just wrote about doing photography with MASTO.   I will post it in another section.

Good to have you here Bob!   Was wondering where you'd run off to!!!

I can really relate to that heat!  We've been having about 2 weeks of upper 90s heat here near Rio and I've been a prisoner of my home and having stepped a foot out to go anywhere in at least 3 weeks and only to go to church for at least a month!  My house isn't air conditioned and nobody else's is either so there's no visiting even !  My home, thankfully is build in such a way as to keep the heat out and I know tricks to keep it cool, but there are days when the tricks don't work so well and that's when I start getting t-shirts wet and rung out and wearing them about the house with a fan always blowing on me!!  

Ugh, I'm so tired of the heat that I can't wish it up your way any quicker!!   But I've got another 2 months more for our hot weather goes for about 6 months here!   So, patience is the key word to survival!!!



Hey Bob, in your descriptions of your more recent situation, you talk about not being able to travel as much and having more issues with the weather.... I can't help but wondering if perhaps your doses are not strong enough for you.   I've noticed that I've had to have increasingly larger quantities of anithistamines but it's not because the antihistamines is wearing off, but because I'm needing more.  Adding Singulair was like a miracle for me and it took my anaphylaxis from 1 a week down to 1 every 6 weeks or so!!  

I can't help but think that you're needing more meds.  Have you thought perhaps this may be part of the problem?   Remember, Bob, being ISM means that your disease is connected to a proliferation disorder.  As time goes by, you get a high burden of MCs which means that the party has gotten bigger with you.  You've got to compensate for the larger crowd by having higher doses, at least from what I'm understanding about it.  I'm not talking about the masto going aggressive or smouldering or anything like that, I'm talking about the natural progression of the disease.   Maybe you need to talk this over with your doctor!

As to going to a more masto friendly place - well, that is debatable.  You may find the weather more friendly Bob, but remember, I don't believe doctor wise it's any more friendly up there.  In fact, it's a lot more sparse!  I can't help but think that it's not bad where you are in Sacremento, but that you'd be happier living up in the Mountains where it's cooler but still not way too distant.    Just a thought!

Hugs!

Lisa