Tired
I have a rare illness called Systemic Mastocytosis which is a rare autoimmune disease that can cause me to have random reactions to random things. For example, could be fine eating/drinking/wearing a certain thing one day and then end up reacting to it the next. It can cause some other things to, but I don't want this post to be too long. Anyway, because it is rare obviously not a lot of people have heard of it. Including most doctors so it's really hard trying to find someone who understands or at least tries to. I've been accused of faking it or lying about it for attention and it's frustrating. I've had some weird reactions. I don't blame people for thinking that it's fake 'cause I know how bizarre it sounds. But still. Even more frustrating when a family member won't take it seriously. My illness has definitely calmed down a lot over the years which is good. I just wish people at least would try to understand and actually take it seriously and I'm so tired of people who don't. (Sorry for the long post)
@Ghostlykay Hey Ghostly, welcome to the community. No need to apologize at all; I hope writing this post helped you out. I can definitely understand your frustration and tiredness; how have you been coping? If you ever need to talk to someone, feel free to reach out to the listeners at any time. Feel free to also let us know if you have any concerns or questions regarding 7Cups.
Best wishes, and feel free to also keep us updated on how you are doing whenever you wish. :)
@lovelyWhisper66 Thanks. I've been coping well
Systemic Mastocytosis, huh! (
Where did the frickin rest of my post go?
Systemic Mastocytosis, huh! (
(eye twitch)
Alright, in parts this time!
Systemic Mastocytosis, huh!
(^ thoughtfully)
That sounds interesting, and like a big pain in the butt!
Do you mind answering questions about it?
For example, I am curious about how long a reaction to a certain thing usually sticks around - months? Years? Days? Permanently?
And by reaction, I take it you mean allergic reaction?
@GoldenStrawberry7100 Usually a reaction doesn't last to long. It can be a few minutes to maybe a few hours. At least that's how it is for me. It's different for everyone so I'm not sure how it is for others
That's so interesting! ¶ I work in the medical field, in surgery. It's funny to imagine how that time out (confirmation of information just before the procedure) would go: "Alright, this is [YFN] [YLN], date of birth [M/D/Y], here for a [procedure name] by Doctor [who]; allergies depend on the minute, and antibiotics were given at [time]. Do we all concur?" ¶ It sounds funny to me.¶ I hope the reactions to food are not too severe, that would be so disruptive. :(
@GoldenStrawberry7100 Thankfully the reactions I get aren't too bad. I think that when it comes to food, it's more of a histamine thing where if I end up eating something high in histamine then I'm more likely to have a reaction. I don't really know how to better explain that. It's weird
Thank you so much for answering my questions, and satisfying my medical-nerd curiosity! I will probably research more about this later, in case I encounter someone, especially a patient, with Systemic Mastocytosis. I am glad that it has gotten better now that you are older, and I'm sorry that some people don't take you seriously. I wish you a super-great weekend! :)
@GoldenStrawberry7100 Lol no problem. Also, thank you. Hope you have a great weekend too
It's alright if you would rather not answer these questions, I can research it later if that would make you more comfortable.
Thank you!
(cringe) So-so-so sorry for the spamming. Hope I didn't annoy you.
@GoldenStrawberry7100 It's okay. I don't mind at all :)
@Ghostlykay- It is understandable why you feel unsupported by others and especially family members. For what reason do they discount your illness? So many people are uncomfortable learning about a disease or disorder- and their ability to be empathatic to your situation. Heaven help them if a chronic illness affects them. Glad to hear your symptoms are decreasing. Hopefully you will find support on this site. Take care.
@barncat The reactions that I've had including the things that I've reacted to don't sound like they make sense. For example, when I was younger, I ended up being allergic to the sun for a year. I haven't had an allergic reaction to it since. I can have reactions to things that I've been fine with before or to things that are new. It's pretty random which is why I think people just assume I'm lying. Doesn't help that it's also rare so not a lot of people have even heard of it. Also, thanks. Hopefully it continues to get better