advice?

[meerkatsara]

Hello!

My name is Sara, I'm 23 and living in italy at the moment. I'm Polish American though, and was diagnosed with indolent systemic mastocytosis in the states, when I was visiting my parents for the summer two years ago. I have struggled a lot with the diagnosis, and started getting symptoms shortly after, (maybe from excessive stress?). Anyway, I am having a really hard time figuring out the medical world abroad away from both my home countries, and I was wondering if anyone had any advice on how to accept a life with chronic illness I am really struggling mentally with accepting it as a new part of my life, and my doctor suggested I reach out to support groups to find people who understand the situation a bit more. Happy to read any replies. Thank you,

Sara

[JayCeon]

Hi Sara, good to see you reaching out in your difficult situation.

Yeah, I can imagine a diagnosis that "early" feels "unfair", and we might be going thru all the "stages" of grief for the life we imagined, like denial, anger, sadness, depression etc., praps alternately or all at the same time.

And on the other hand the diagnosis doesn't come from nowhere, we have to live with the symptoms anyway. A diagnosis appears to finalize something we thought we might solve. But it's also more of a chance to solve what's there anyway.

If we consult the Serenity Prayer, chronic rather than acute means accepting, more than being able to improve things. And yet there are many things we can work on, by tracking symptoms, identifying our triggers, trying various doc treatment suggestions, and our own ideas based on all we read, whether more the med route or like me (MCAS) the supp route. Personally, I play this game patiently, keep looking for new possibilities (recently found one, after 2 years of MCAS full flare and 4 years of fibromyalgia full flare), based on "radical acceptance" (from various belief sets, but also Acceptance and Commitment Therapy, ACT).

At the same time as doing one helluvalot to get improvements, that radical acceptance helps me embrace that new life, cos it's the only one I've got, and make the very best of it. Like prioritize how to get and keep quality of life, which is an attitude of learning to be happy about all the many little "reasons to be cheerful" which I collect on my blog every day. But also make sure I corner those symptoms which are most annoying, like insomnia. I've solved so many symptoms, even many I've had life long. Still can't do much, but am happy...

If any of this strikes a chord, I'd be pleased to deepen on it, if not, maybe more about yourself may help.

Maybe someone with SM can chime in, I know there's quite some differences to MCAS.

I think the medical worlds in all countries need figuring out, and changing all the time, anyway. Some things we may be able to apply to the different foreign conditions better than people living there who may just accept what they believe, but that has to be done carefully by researching and testing what things may more possible than others think (I know the UK a bit, and am in Germany).

[Mastomum]

Hi Sara, sorry to hear this. I have mast cell disease but still trying to get diagnosis. Have lots of symptoms but I am learning to live a new life with careful diet and avoiding triggers such as stress, scents, food etc. I also take various meds. I would suggest you join Instagram and search for masto friends. I have several on there similar to you. One young mum. . It is much more supportive and active. This sight is quite unresponsive so hardly come on here. I am on insta as @ajsdeliciousglutenfree because gluten was a major factor that made me so ill. Also after hospital admission and constant diahorrea and rashes realised histamine is a major trigger. Didn't realise how much histamine there is in the world haha. Best wishes, Amanda