Thursday, April 1, 2010

I Have a Ribbon!


I know, I know- you're probably all thinking, "yeah right, it's April Fool's Day!" But I promise it's just bad timing on my part! LOL! I'm usually really into April Fool's but for some reason this year I'm not!

So the other day I was kind of pressured into signing up for a 12 sessions with a personal trainer at my gym.  I initially wanted to do it, but I decided that I'm not ready for that just right now.  I just enjoy going whenever I want without having the stress of trying to schedule appointments in my busy week.  But nonetheless, I signed up.  I told Donna (the trainer) about a condition I've had since childhood called Systemic Mastocytosis (It's a mouthful- I know).  Basically I wanted her to be aware that while I'm not forbidden to working out my stomach muscles, I can't over-do it, otherwise I might go into anaphylaxis shock, which isn't super fun! LOL!

Well the day came for our first appointment and I was supposed to meet her at 6:00pm.  It is next to impossible for me to leave work and get home by 6:00pm but I was trying! Of course, I was late like 20 minutes, traffic was bad, I was stressed, and I realized even more that I just wanted my money back because I really didn't want to do this! So I walk in and explain myself and ask for the money back.  Well she is very accomodating and keeps asking me please not to stress over this, it was completely fine, and that I should just relax and she would take care of everything.  There was even a sense of urgency in her voice.

So the next day she comes up to me as I'm walking on the treadmill and says that she had looked up my condition online and had been doing a little research on it.  She said that stress was a major trigger and that I should really be careful driving back and forth so far to and from work.  She chatted some more about it and offered her services as a nutritionist because she really thinks I could use some help with it.  Well I went into the locker room when I was done and googled "Systemic Mastocytosis." No wonder she gave me my money back and even seemed to be over concerned.  Reading the websites makes it sound as if I'll drop dead any second! LOL! Poor lady thought I might die right there in her office! LOL!

I was stoked to see that there is a whole lot more information on the disease (although I don't like to call it that- it makes me sound sickly! LOL!).  When I was a child they had no clue what was going on! I even have an awareness ribbon! Which I'm way stoked about! LOL! I might wear it every day now! (I know- they one for everything)!

But now you're probably wondering what the heck is SYSTEMIC MASTOCYTOSIS?

Well I've included a link to a great website that will explain it pretty thouroughly. But warning: it does kind of make it sound like I'll die any second- don't worry about me- I haven't died yet- it's not gonna happen from my condition- I promise!

Basically, my body produces too many MAST CELLS.

Mast Cells are part of the immune system.  They release chemicals like histamine- which has a lot of functions but the most common ones are like symptons of allergic reactions. 
This little video shows what happens when a Mast cell comes in contact with an allergen:



Pretty Explosive huh!? Well Mast cells are located in all connective tissue and Bone Marrow, Intestines, skin, lots of places.  Basically my Mast Cells can be triggered to respond like the one you just saw by a plethora of triggers: from heat, cold, stress, spicy food, exercise, sudden blow to the stomach, medications, and just about anything.  It can even vary from day to day.  The reason they can be triggered so easily is because they don't die when their supposed to and become unstable.  Because they don't die when they are supposed to is also another reason my body has too many! LOL!

A Mast Cell can either leak its contents slowly, or rapidly, like the exploding one above. In both cases the silly little guys seem to give me trouble.  They can cause lots symptoms, including but not limited to:

Abdominal pain
Anaphylaxis
Blood pressure changes & shock
Bone pain (mild to severe/debilitating)
Chest pain
Cognitive difficulties/brain fog
Degenerative disc disease
Diarrhea
Dizziness/vertigo/lightheadedness
Faintness
Fatigue
Flushing
Gastroesophageal reflux
Hematological abnormalities
Hives & other rashes
Inflammation of the esophagus
Intestinal cramping and bloating
Itching, with and without rashes
Irritable bowel
Liver, spleen and other organ involvement
Malabsorption
Migraine headaches
Muscle pain Nausea
Osteoporosis/Osteopenia
Peripheral neuropathy and paresthesias
Rapid heart rate
Vomiting


Sounds like fun right! LOL! It's one of the reasons my stomach occasionally gets in a rather loud growling mood.  It's really quite embarrassing because it always seems to happen at the quietest times. LOL! It also explains why I'm extra protective of my stomach, why I can be really sick one day and better the next, why occassionally I get migraine headaches and why I am just a little extra cautious about some of my activities!

But I was really quite suprised when I found this offical website: The Mastocytosis Society

In my entire life I've never met anyone else with Systemic Mastocytosis. I have met 1 person with a Mast Cell disease, but only a skin one.

As I explored the site a little bit I stumbled upon a blog of guy titled: living with Mastocytosis or something like that! LOL! The guy is 40 something years old and has had Systemic Mastocytosis for the past 13 years and he writes about his struggles and fears and stuff! In one post he even talks about how he was worried he might go into anaphylaxis shock (oh- no...with sarcasim) I guess I don't understand what the big deal is! That may sound insensative, but I've had Systemic Mastocytosis since birth and throughout my life I've gone into anaphylaxis shock probably 11 or 12 times! I mean it's definately not a fun experience or anything, but it's not something that's at the forefront of my mind ALL the time! It all seems a little silly to me! But hey- I have a ribbon now and that's what counts! LOL!

And I guess it's a little cool to know that there are others out there like me- even if they do sound a little exaggerated! LOL!

In case you don't know what anaphylaxis shock is...watch this video...




...mine doesn't swell up my air passage and cause me to stop breathing though! It does cause my head to feel like it's about to explode- probably swelling- and then have extreme hypotension (low blood pressure) and pass out.


And here's a little more scientific picture of a Mast Cell and it's role in the Immune System- It's way too complicated for me though! But I thought, maybe you're a science person and would like it!


4 comments:

In The Doghouse said...

Are you hinting that you want me to buy you that T-shirt? Don't forget to join the Mastocytosis Society Facebook page at this link too! http://www.facebook.com/group.php?gid=155824303735

The ribbon is so exciting!

Caryn said...

Wow, Greg, that's crazy! Please please take care of yourself; that list of symptoms is no joke!!

The Biting Gnome said...

I was just diagnosed...I've been sick off and on since I was a newborn, but the last 7 years I've been really bad(skin& internal issues). My doc prescribed Gastrocrom, but with insurance it's $700 for 24 days. Which for obviously ridiculous. Do you take meds to help control the mast cells? And if so, is it anything affordable?

Greg Dowden said...

Sorry that you're not feeling well! I took Gastrocrom for a while...it was nasty stuff! Not sure if it's changed at all but when I took it, it was expensive and only in liquid form 4 times daily! Not to mention the liquid tasted like metal. I don't know of any other medicines that stop mast cell production, but my doctor has me take 1-2 Claritin (or generic antihistamine) everyday. It really is only treating the secondary symptom (histamine release from the mast cells) but it has helped me. Let me know if you find a better medicine! Good luck!