Part of the reason I started this website was to bring awareness to mast cell disease. I also wanted to share my own personal experiences as a patient/sufferer because from the first moment I learned about this disease, finding and reading forums and blog posts really helped me a lot more than anything else possibly could have.
The medical descriptions helped, of course, but I learned so much just reading page after page of first-hand accounts. I remember wanting to cry happy tears more than once while nodding my head in amazement. It wasn’t because I was thrilled to have this disease. It was because I felt like a child who had been adopted out to a foreign family and finally found my way back to my birth land.
Back to my people.
These really were “my people” and they understood me. They knew what it’s like to feel like you have a head cold and a stomach flu at the same time, all the time. They know what it’s like to have an intolerance for shoes and roller coasters and hot tubs. They know what it’s like to be “allergic to the world”.
They know the feeling of the itchy, burning dermatographia we get wherever we scratch, even on “good days”.
They know what it’s like to wake up itchy and red and swollen for no apparent reason, too.
They know what “brain fog” feels like from the inside of my brain. They know what it’s like to cry because you miss cheesecake and you’re craving it so bad you just want to freaking die!!
Then it passes and the next thing you know, you are craving blueberry muffins and want to cry again.
For me, knowing I could finally relate — finally! — with others who were going through the same or similar experiences made me feel like I wasn’t alone or crazy anymore. Even if we have vastly different symptoms, and some of us do present quite differently, we can at least know that someone out there understands from a point of view only a fellow sufferer of mast cell dysfunction can relate to. I’m sure there’s a study somewhere showing that having this connection, even with complete strangers, is good for your overall prognosis and quality of life.
Now that I’m blogging about living with mast cell disease, I get a lot of emails (which I love by the way, so please keep sending them, they really do make my day!) so I have a few online pen-pals who have either been diagnosed or are in the process of being diagnosed with MCAS (I believe this is an epidemic in the making here, folks!). We talk about symptoms as well as medicines, doctors and diagnostic tests. We talk about foods and coffee and shampoos. We talk about getting better and maybe even finding a cure someday.
What I don’t talk about with anyone very often is the dark reality of what it’s like living day-by-day with a disease that has literally halted my entire existence. I can’t believe I am the same person I was just three years ago.
Yes, I am doing much better since my diagnosis and yes, I am grateful to my immunologist for finally finding the name of what’s wrong with me, but my reality is still the same, diagnosis or not. I am completely and utterly crippled by this disease, even on my best days, and I rarely leave the house anymore.
The truth is, I still can not go out without being triggered and when I’m triggered I am really sick for a week or more so it’s just not worth it. I seem to get hit worse with symptoms each time I do get sick and it takes a huge toll on my body, mind and spirit. It’s a living nightmare and I hate to admit it but I get so sick of being sick I just want to go to the Dignitas clinic in Switzerland and end my misery, it gets that bad. I am not exaggerating when I say this, either. The pain is almost unbearable at times, yet I bear it because I know it won’t last. Plus, I love my life (what’s left of it) and I love my family!
I don’t love mast cell disease, though. I really don’t love that it makes me angry and cynical when I want to be cheery and upbeat. It has definitely changed my personality for the worse, so I’m working on that. The Doxepin helps (I’m not depressed, just angry and cynical now haha) and so does blogging about it.
Using a bit of humor definitely helps:
Then I think about karma.
I wonder sometimes, could this be my own karma coming back at me? I do believe we live in an “interactive universe/reality” so it’s a definite possibility that I brought this on myself.
If so, how big of a jerk must I have been in a past life to deserve this as punishment?!
A huge one, obviously.