I love getting emails from readers because they offer me new ways to look at mast cell disease and how it affects each of us in similar yet different ways. Sometimes our symptoms and triggers can be almost identical or polar opposite from those of the next patient, and so can our co-existing conditions, which is partly why this disease is so complex.
As Dr. Afrin says:
Isn’t that the truth?!
Just recently I’ve chatted with a couple of different patients who have some pretty serious co-existing conditions that are probably related to their MCAD, just like my granuloma annulare (which I believe is caused by the tumor necrosis factor dumping from my mast cells).
I heard from a lady with Dercum’s (bless her heart!!) and I had to Google it because I hadn’t heard of that. I didn’t find it on the co-existing conditions list, but of course that doesn’t mean much. She told me Dr. Afrin believes it is MCAD related. When I saw the pictures and read about the disease and saw what she is going through it really put things into perspective for me.
I also heard for the first time this last week from another MCAD sufferer who also has granuloma annulare, so that was a total surprise. I just knew (I knew!) there had to be others since this blog gets a lot of search traffic from people using terms like “granuloma annulare and mast cell disease”. So while I felt awful for her I was happy that I’m finally connecting with others who understand and see things from my perspective. 🙂
It’s so important that we know we are not alone in life, I think we all agree on that, and in particular with this disease because when you feel utterly alone, and even your doctors don’t understand (or worse, think you’re a hypochondriac!), it gives you a very different perspective on the world and life in general which can negatively affect your emotions which in turn can actually trigger more mast cell degranulation and that can cause you to get sicker and sicker, compounding the problem until, well, I guess until you die.
Then you have zero perspective because you’re dead(!).
Once you realize there is an entire community out there just like you it helps a LOT because you also realize that hey, I’m not alone and I’m NOT CRAZY (omg!)! I know from experience that it can completely change how you look at your own life and disease.
This disease has changed how I interact with and view myself in the world, too.
I quit almost all social media years ago because it was too emotionally triggering (both good and bad), and my close friends in real life now can be counted on one hand, which is okay with me and pretty typical of someone with a chronic illness, really. I don’t take it personally and I try to look at it from a healthy person’s perspective. I understand why they don’t want to be around sick people. It can be a real downer.
I envy them and at the same time I am so very happy for them. Happy that they may never see things from my perspective because honestly, between you and me, it’s a pretty crappy view sometimes, which is why I try to find ways to look at things from a different angle as much as possible. I know I can spiral down into self pity very easily. Seeing things a different way always seems to reset my mood and make me feel more humble and grateful rather than bitter and angry.
Luckily humble and grateful are two emotions that don’t seem to trigger this arsehole:
Ironically, bitter and angry does trigger him so I have to contain myself, which takes some real self control, believe me (thanks universe)!
Do you know what does still trigger him like mad no matter what I do or think or feel, though? My hormones (grr!). Yep and I’ll be writing all about that (again) soon in a post that my family doctor inspired this time, entitled: “MCAD & Hormones: So Hey, How’s Your Sex Life?”.
Oh yes, you won’t want to miss it.
And remember, we’re in this mast cell craziness together! 🙂