Tuesday, February 28, 2017

Rare Disease Day: MCAS


So, in Oct. last year I let you all know I had a form of dysautonomia (this post) for dysautonomia awareness day. Well, today I will do the same for rare disease day. I am rare (and not because I often feel like my brain is undercooked!) and I have MCAS (mast cell activation syndrome) which is considered rare and hard to diagnose. In very short, incomplete terms MCAS is a condition where my body thinks I should act allergic to things I have no allergy. There is a lot more to it, but since it is considered rare, it won't have much impact on you so I don't want to talk about my diagnosis. This is really going to be a short acknowledgement that there are people out there with rare diseases and disorders. Anything that has under 20k (in the US) citizens diagnosed is considered rare. Besides getting funding to help one rare disorder or disease helps more rare disorders to get recognized and diagnosed.

*Warning* Rant about to happen (but it is short)...

I do want to say somehing... I wouldn't have gotten diagnosed without the ACA. This is the main reason I was unhappy that Lord Dampnut (anagram of 45's name from the comedian Colin Macherie) and the republicans won in the last election. They were after the ACA and I believe them. I figure once Ryan guts it enough (already happening and has not only started to gut medicaid but also medicare with more down the road) he will probably implement his version in which those with preexisting conditions get put into a pool and get their insurance from that group. Yea, not affordable at all and quite frankly it sounds like the Hunger Games for medical help. Medical Games? Do not bet on me (just an FYI). So, I already know I will have to decide which medications I can keep and which will go. I have already made that decision but will only worry about it once my ACA is completely gone. I can't do anything else at this point. I will worry what will happen if something major happens but there is little else I can do at this point. Many of these decisions will be out of my hands. Others will be hurting as well and are even worse off than I am. Even if they keep some semblance of the ACA, I figure it will be so confusing it will be unusable. Seems to be the way this regime is going about everything. The insurance has less restrictions then I've ever seen, and so many people will be hurting so much more than even before the ACA.

Okay, soapbox is over. You can come out now. 😉

Here is the official Rare Disease Day Video:


I agree, getting a diagnosis is hard. Even if you aren't rare, it can be a hard thing to do especially when it runs afoul of a doc's ego. This is why the ACA (or good affordable health care) and research is so important. Also, while you are trying to get that diagnosis and are frustrated, remember this: 


Sometimes this is more important to remember than those that say never quit. Sometimes you just have to have that melt down. Forgive yourself and move on. 💖

I also want to address something else. I have migraines so everyone (it feels like that on social media) is an expert on migraines... even those that don't know what they are exactly (other than a bad headache... if you believe that I have a bridge to sell ya!). So for those of you who don't hold a medical degree, please do not give unsolicited advice about a problem you know nothing about. [Edit: I'm really talking about those that insist that their way is the only way and to do otherwise means you are faking it. Generic posts do not bother me] Plus the cure you have found that your second cousin's ex-sister in law's best friend's aunt's uncle who knows a guy just may not be the cure the person you are talking to is looking for. Even though it usually comes from wanting to help, the best thing to do is just say "I believe you". When you have an invisible illness (rare or not, it doesn't matter) you are often told that you are a fraud. Hell, you tell yourself that enough times that even in the midst of pain you start to question it. Fakers are easy to spot so don't assume that everyone is faking it especially when there is evidence to the contrary. If you feel they are just in it for the attention then disengage instead of insult someone who might be genuine. Okay, off that soapbox for now. 😁


Okay end of post. I know there are so many other things I could have taken on, but since I know how it feels to be overwhelmed, I just took on a couple and hope I made some sense. I also hope you took something away from it. 

If you want to get more involved with Rare Disease Day:


44 comments:

  1. working in a hospital (i'm a pharmacist btw), I get to see one form of are disease, its a small hospital. It is hard not only for the patient, but the support group as well. So I want to say that you are doing well, and hope you get that in control.

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    1. What docs forget is that it is rare, not impossible. That is why they use the zebra as a mascot. Look for the horses but don't forget the zebras.

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  2. When I started getting migraines I was afraid they would keep on coming, but they stopped. Which I am eternally grateful for. They are horrible. So no, I do not have a cure ;) They are different for everyone. it might have been my birth control, it might have been my sore shoulders/neck etc etc etc etc

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    1. YaY! I'm glad you found relief! I don't mind the posting of remedies but there are people who INSIST that if it doesn't work for you or you don't try it then you are faking. Those are the ones I'm speaking about. :P Hope your relief continues!!

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  3. I love your advice about melting down because it is so true, sometimes in any situation, you need to just let go, get it all out and then be stronger for it the next day. ;) Thanks so much for sharing this with us!

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    1. Yep. Sometimes I had to say "I quit". It got a load off and then I was able to pick the baton back up with renewed strength.

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  4. Thanks for the education on MCA, I also didn't know today was Rare Disease Day. The human body is such a mess and I'm thankful for scientists for working so diligently to diagnose and treat these diseases. My father in law has a pretty rare disease as well and it's both scary and fascinating to see doctors work to so hard to come up with answers for why the body reacts a specific way.

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    1. Well, I didn't really educate about MCAS and there is so much more they are currently learning but I didn't want to overwhelm everyone with so much info. So, I thought I'd take what is familiar to everyone. I'm glad your father in law has a diagnosis and at least some sort of plan (hopefully). Sometimes that is the biggest hurdle. Hope he feels better.

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  5. I just watched a thing on the local talk show about the gutting of the Affordable Healthcare Act. We all need to start contacting our congress people and complaining and if they don't do the right thing, vote them out. Our best chance to fight Dampnut is so stick together, fight and vote in a Democratic Congress next time to lock horns with him every day. Hang in there. I get migraines every once in awhile and they are miserable, but I know that works for someone won't work for someone else and there are sometimes when you just have to wear them out.

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    1. What has already been gutted is horrifying (I mean they even already hit the vets and kids by taking away securities of coverage!). Yep. The only way I'll get the Rs in the state's house and senate is to vote them out (one senate member is on the list of no shows for town halls) and I'm hoping for a more forceful showing from our Ds. I don't care if they are R or D but it seems they have divided themselves in that way in terms of showing up, what they voted for and whom they are listening.

      Sorry you get migraines. :( As I said with B's comment, I don't mind the posting of remedies in a generic way, but there are those that insist that they are right or you are faking. Yea, not good there. :)

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  6. Thanks so much for posting this. Awareness is a big deal. I have a less well known allergy that doesn't act like a regular allergy so it's not fun getting people around me to understand when it affects daily life stuff. The 'I believe you' is such a nice thing to hear. :)

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    1. What is normal? :D I hope you are doing well. I do believe you. 💙

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  7. I laughed at Dampnut. Awareness is so important, and is accepting that just because we can't see things, doesn't mean they aren't real.

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  8. It's a really interesting post Melissa, thanks for sharing!

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  9. Firstly let me send you a hug *hugs* - second I don't know if you intended it but whilst tackling very real and serious problems you manage to keep humour in there and made me lol.

    There is a bit more awareness of late, certainly on my social media timeline/friends posts about invisible illnesses and feel for those who experience rudness, idiotic "advice" and just general lack of understanding or empathy. xxx

    Lainy http://www.alwaysreading.net

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    1. I'm glad for the lol'ing. 'Twas my intention. ;) I think there is an increased awareness so I that is probably why you are seeing it more. Thanks for the input! :D

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  10. I have allergy issues as well - something called OAS (Oral Allergy Syndrome) which used to be called Birch Pollen Syndrome. Basically, my body thinks certain proteins in fruit is birch pollen and I have horrible reactions. Apples, peaches, kiwis, pears, plums - they all make my lips swell and my throat itch like crazy. Not fatal, though. So I eat fruit and just look like a leper for a little while. :) SOrry for being so random.
    Rebecca @ The Portsmouth Review

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    1. I do know about OAS and I'm sorry you have to suffer through it. I know several people who do and it isn't pleasant. ((HUGS)) I know it won't get better but I hope you do feel better!

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  11. I love when you post about this each year. I've had several friends with rare/lesser known diseases and any help to educate and spotlight them helps enormously.

    As for ACA - it seems no one remembers all the horror stories of enormous personal debt (sometimes foreclosing on houses, suicide) or being dumped from insurance once you got sick.

    If you don't have money there is no freedom of choice.

    Karen @For What It's Worth

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    1. Oh you could so get me to rant right now. ;) I have no idea why they don't just take the problems of the ACA and fix it from there and continue to do so as problems come up. Nothing is perfect and even the fixes would have problems... but there would be a plan in place. They have no comprehensive plan yet. :( *sigh* All I will say... for now. ;)

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  12. gosh I almost wish I have not read that thing about ACA , but it's better to know what's going on instead of sitting here ignorant. There is only one hope for us tho that in two years we can vote in more democrats and in 4 , we vote in a democrat who will reverse all this damaging bullshit that the republicans are causing. God I cannot stand to believe how many people - who use these programs - are cheering them on. It's sickening.
    I believe you about the migraine, I won't tell you what to do about them. My sister gets them regularly and nothing helps. My mom likes to tell her what to do, what to try, but she has been to doctors, chiropractors and nothing worked.

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    1. I don't mind knowing what works for others with migraines, but I do know mine are connected to my specific problems. When it improves so does the frequency. It is harder to not know what to do (I've been there as well). I hope your sister finds answers and some relief.

      As for the ACA... I don't think the Rs will listen until their jobs are at stake. I actually will say the same for the Ds. Ds need to have a more forceful, definitive, and united showing. I hope they have the fire lit under them to pull it off. Right now I'm not sure... but I do hope. I'm actually more upset about the racism that has gained a footing in the WH. That is still changeable and I'm not sure what has been done to the ACA is at this point. :-/

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  13. I often try to find ways to help friends (and others) that I know are hurting (I do believe). I think because I feel so helpless and just want to make that person feel better so that they aren't suffering. Your post is a good reminder that sometimes the best help is just being there, listening, and believing.

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    1. You can't take on someone's suffering so they do not suffer, but yes, you can still be there for them. That is the biggest gift to give. ((HUGS)) You rock!

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  14. While my auto immune diseases aren't rare, it was hard to get a diagnosis. It took three years before we had answers and could begin treatment. I worry for those with pre-existing conditions and hope our senators listen.

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    1. Yep, you don't have to be rare to have problems getting a Dx. Sometimes we just aren't text book cases and I think docs forget that.

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  15. Thanks for sharing your story (and "rant")! I know how frustrating it can be when you can't seen to get a diagnosis and therefore start a treatment! I can only imagine how much harder it is for a rare disease to be overlooked and not treated right!

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    1. I mean there aren't as good of options out there than if you had a disorder that is recognized, but you still have a outline to go by for treatment. :)

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  16. Thanks for sharing and couldn't agree more about the ACA. Is it perfect? No but it helped with a lot of problems, and I honestly think the R's hate it so much that they're going to try and repeal it just to make their point. so shortsighted (and not serving America's interests). I honestly don't undertand that party and anyone who votes for them...

    Anyway... nice post.

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  17. Great post Melissa. I love that you are spreading awareness and are giving us all a small piece of you.

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  18. I believe you. And I'm happy you were able to get a diagnosis and I pray that the ACA, Medicaid and Medicare aren't so thoroughly screwed up that it hurts you and others who need these programs. Thanks for sharing about yourself, Melissa. {{{HUGS}}}

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    1. Aw thanks! ((HUGS))

      It actually has already been tampered with so next year should hold some interesting discussions... :)

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  19. Thanks so much for sharing! It must be indeed so frustrating to have an invisible disease and have people constantly give unsolicited advice and act like they are experts.
    Also, I'm sorry to hear about the ACA and I hope it still works out for you and everyone else. In Belgium affordable health care is a given, a basic need so it's hard to imagine there are actually people who are against it. Thanks for sharing your insights!

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    1. Well, I have a hard time imagining it too and I live here. :p

      I'm actually lucky and don't get too much unsolicited advice but I know others who have been hurt by it so I included it.

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  20. Thank you for sharing your story. I think this is important for all of us to read.

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    1. Thanks. I didn't really share too much, but I appreciate you reading it. :)

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  21. Great post. I have something that many haven't heard of. I'm not sure if it fits in the "rare disease" category that you've mentioned. I have Sjögren's syndrome. It's similar to Lupus, as an autoimmune disease. I know that I've had conversations with people about the fact that just because someone looks healthy, it doesn't mean they are healthy. There are many kinds of diseases that make it difficult for people. Mine isn't too bad, but there are bad days. I hope that yours isn't too bad either. Thanks for spreading the word. So many don't realize.

    Melanie @ Hot Listens & Rabid Reads

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    1. It isn't rare but it can be hard to diagnose. I have a cousin who has that and that is one of the things I was mistakenly diagnosed with (there are a lot of miss diagnoses in rare disorders) so I have looked it up. :) Perhaps I should do a post on invisible chronic conditions. That is common to a lot of folks.

      I hope you continue to do well and the bad days are minimal if at all! ((HUGS))

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  22. I went on a few rants the last few days so rant away. However I feel like I now should refer to him Lord Dampnuts.

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    1. Perfect name, no? XD

      AND their plan was even worse than I thought! UGH.

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