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: