Trying not to go crazy

Posted , 3 users are following.

I have always tried to be a positive, happy person but having mast cell disease makes it difficult some days. The isolation and anxiety that comes with trying to manage is enough to drive me mad some days so I try to focus on hobbies like sewing, writing, gardening (when the bloody wasps aren't out to kill me) etc.

Just curious what all you are doing to not go crazy with this isolating disease? I used to be so outgoing and active and now I'm a recluse. Wondering how everyone else handles it?

xo Michelle Dellene

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6 Replies

  • Posted

    Hi Michelle.

    I'm sorry you are having a tough time, feeling isolated and alone. Maybe I can add a little light to your day. I was recently diagnosed with MCAD and between all the crying and fear, I found your website.

    I spent my afternoon reading every article I could. Your story made a huge impact on me. You seemed strong and confident despite our Dx. Your words gave me strength when no one else could understand. You helped me realize we don't need to have answers all the time. Sometimes, we just don't want to feel so alone. For a brief moment, I felt you there with me.

    I just wanted to thank you for lifting my mood, giving me hope and letting me know others are living some sort of life with MCAD.

    Ann Marie

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    • Posted

      Oh my gosh somehow I missed this reply! I am so sorry it has taken me a year to respond. You are so welcome, and I wish I could do more to help others. I do what I can, when I can, and now that I'm feeling much better I am able to do so much more! When I wrote this post I was in such a dark place. Thank you for your kind words.

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  • Posted

    My MD thinks I have this disease but I do not see a rash. I have some of the symptoms that I read about but were wondering what are the most common ones. I have Lyme Disease so there are probably cross overs with that. Any advise or info would be appreciated.  Bekka
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    • Posted

      Bekka, some forms of mast cell disease are systemic, and the skin isn't involved. There are also forms that manifest ONLY in the skin. My Dx is MCAD and I don't typically get rashes. I don't have UP either.

      The way I am today is no indicator of how I will be tomorrow, unfortunately. And my Dx could change. This is one of the things that makes mast cell so frustrating.

      Google "Mast cell disease fact sheet - Mast Attack" for an easy-to-read summary of all the different subclasses and the symptoms to expect.

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  • Posted

    I've been reading your website. (Just started) I'm curious, both you and your son have MCAS, how diverse are your symptoms? I'm suspecting a mast cell disease runs in my family. Ive had symptoms for years that fit well with mast cell disorders, slowly waiting on a referral to the University of Utah, (live 30 min north of SLC.) Going to call my dr and ask again if i don't hear anything in the next few days. (I'd make the appointment myself but I don't know exactly what department down there to call.

    Meh, I'm rambling here. Basically, wondering about MCAS as possibly running in my family. My sister has *much* more severe symptoms than me, esp hypotension, insomnia, fatigue, and angioedema. But these are quite different from the kind of symptoms I have. (Severe GI symptoms, bad itching, flushing, dermatographia, wasp sting allergy, among others) also my mom has her own symptoms that are quite different from mine, or my sister's, milder than mine, by quite a bit. Though my mom has gone into anaphylaxis from radiocontrast dye for an x-ray which still fits well with MCAS.

    Mostly been posting about myself so far, but exploring the possibilities about mast cell disorders running in my family, (nothing else to do while waiting on the system). So curious how similar your symptom set and your son's compare.

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    • Posted

      Sorry I missed your reply, too! Gosh, I feel awful. By now you must have your dx and know so much more about this disease. As for my son and I, our symptoms are similar in most ways except he doesn't get the period cramps and estrogen related symptoms (lol lucky guy). We are both doing much, much better these days. Again, SO SORRY I MISSED THESE POSTS! Argh!! smile

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