I know there’s probably not a huge audience for a blog specifically about mast cell disease but after seeing my last website about this topic’s popularity grow exponentially over a three year period a few years ago, I have a feeling there are more people out there looking for information about living with MCAS and mastocytosis from a patient’s perspective.
Being born sick, I unfortunately have a lot of experience living with mast cell activation and now that I know what it is, I can clearly look back and connect so many dots all the way to birth, health-wise. I was in and out of hospitals for many years in early childhood, always sick with random things from head to toe, and never a solid answer why.
Until five years ago (I’m 51 now).
And while MCAS or mastocytosis explains why we are sick, I still like to dig further and find out why we have mast cell disease to begin with. There has to be a root cause, because it seems to run in the family and there’s not a lot of research out there on that so I feel driven to try and connect my own generational dots, if only for my own curiosity’s sake.
I also love reaching out to other patients or those who are sick, can’t get a diagnosis, all the tests come back “normal” and yet they’re still getting worse, year after year, with zero idea why. I’ve helped many people figure out that their mast cells may be wonky, like mine, after being contacted by them through my old website.
It did get overwhelming back then, I was getting 10k visitors a day, mostly for the doctor directory, but I did manage to help provide a lot of support for quite a few people and I honestly miss that. I remember feeling so alone and lost when I was at my worst, and I feel so lucky to have found Dr. Petty and the diagnosis that changed my life. So I want to pay that forward as much as I can.
It does mean striking a balance, though, because I get attached to people and I am very empathic so it can affect me badly being so involved with other sick folks. Some people with this disease are far worse than I ever was and it’s heartbreaking. Since strong emotion is one of our triggers, I have to balance myself and sometimes distance myself from the worst of it which can make it hard to be a full time advocate.
Still, just writing and blogging about my personal experiences as well as throwing some research in here and there can help someone else out there, I’m well aware of the power of the internet, so it’s worth it to me to do this and hopefully help just one poor lost soul out there who is “allergic to the world” and doesn’t realize that there is help. Just a few years ago I was almost bedridden 24/7 but today I manage quite well.
I’ll be sharing what I’m using on another post, and I’ll link to the specific brands and medicines I’m using (most are OTC) but if you’re reading this and hoping that what works for me will magically work for you, too, then please realize this disease is so complex that many of us have to find our own personal cocktail of medicines and foods and lifestyle changes to make it work, so there really is no one-size-fits-all approach.
The good news is, we tend to find relief using the same things (quercetin, aspirin, H1/H2 blockers) and I’ve already done the legwork of finding the cleanest, purest forms of these I can find because I react badly to fillers and other ingredients. So hopefully my hard work will help you find what you need to feel better faster.
Anyway, like I said, that’s a future post. Also, please remember this is not medical advice, just my own personal experiences living with mast cell disease.