Monday was Rare Disease Day and Lady Sif's birthday!!
I was gonna update of Rare Diseases Monday but clearly I am a few days late though on all of my social media, and Wonder Woman's I have posted about rare diseases.
To come under the umbrella of the rare disease title there must be less then 100,000 people diagnosed with your disease. Theres much debate on whether or not POTS and MCAD is truly a rare disease, cystic fibrosis how ever is. Also my niece has Steven-Johnson Syndrome. Which is even rare then what I have. When I heard she had this I was just heart broken. Yes my allergic reactions are bad, but hers are pretty crap and way more dangerous then mine. My understanding of all this after in-depth research on what I can find, is the top layer is skin essentially just peels off, and leaves open wounds that can cost a massive infection and lead to death. She's OK and back to her normal self but this is not something you can just look at and say "you have this." This is something that has to be triggered and activated and now she has to be careful about what she takes.
As for the rest of the diseases if you follow me or know me you hear about quite a bit. They effect my daily life and I am not sure if I updated lately my PFTs showed how bad my lungs truly have gotten. I will update more on this later.
These diseases as you know effect every aspect of my life. I had to give up things I love (like concerts) because people smoke or do drugs, which gives me an awful reaction. But it has also introduced me to many things I love. Video Chatting, Coloring, Sewing, Cross Stitch, Reading, and Baking. Yes I am a Chef but I am a real chef not to offend anyone but I do more then just pastries. I try everyday to over come this, to maintain my IV and treatments well trying to lead a normal life. To balance breathing treatments and going out with out getting sick.
But what people do not see how Rare Disease effect every one around us. Every missed phone call, Wonder Woman worries that something serious is wrong, every missed t ext she is more worried. Poison Ivey has volunteered her time to run a page to get awareness out and raise funds for me. Wonder Woman educates people on what my daily regimen is like. Everyone works together as a team to keep me healthy, to keep me stable, and to just keep my spirits up.
If I miss to many days at a place I frequent people get worried that I am sick again. People worry constantly if I am ok, am I sick, how I am doing. I always send people here and when I know I can I give them my FB because every now and then I post on there to keep people up to date or at least let them know I am alive.
But most importantly Rare Disease Day this is a day we as a community can join together and get our voice heard not just for our illness but for everyones. Thanks to the internet we can hashtag and can learn about other peoples diseases, we can join together across the world and get our voice heard!! Which is a huge step in finding a cure or just getting education out there.
But I am gonna hop of here and enjoy my coffee
Love Y'all
Poppet
I was gonna update of Rare Diseases Monday but clearly I am a few days late though on all of my social media, and Wonder Woman's I have posted about rare diseases.
To come under the umbrella of the rare disease title there must be less then 100,000 people diagnosed with your disease. Theres much debate on whether or not POTS and MCAD is truly a rare disease, cystic fibrosis how ever is. Also my niece has Steven-Johnson Syndrome. Which is even rare then what I have. When I heard she had this I was just heart broken. Yes my allergic reactions are bad, but hers are pretty crap and way more dangerous then mine. My understanding of all this after in-depth research on what I can find, is the top layer is skin essentially just peels off, and leaves open wounds that can cost a massive infection and lead to death. She's OK and back to her normal self but this is not something you can just look at and say "you have this." This is something that has to be triggered and activated and now she has to be careful about what she takes.
As for the rest of the diseases if you follow me or know me you hear about quite a bit. They effect my daily life and I am not sure if I updated lately my PFTs showed how bad my lungs truly have gotten. I will update more on this later.
These diseases as you know effect every aspect of my life. I had to give up things I love (like concerts) because people smoke or do drugs, which gives me an awful reaction. But it has also introduced me to many things I love. Video Chatting, Coloring, Sewing, Cross Stitch, Reading, and Baking. Yes I am a Chef but I am a real chef not to offend anyone but I do more then just pastries. I try everyday to over come this, to maintain my IV and treatments well trying to lead a normal life. To balance breathing treatments and going out with out getting sick.
But what people do not see how Rare Disease effect every one around us. Every missed phone call, Wonder Woman worries that something serious is wrong, every missed t ext she is more worried. Poison Ivey has volunteered her time to run a page to get awareness out and raise funds for me. Wonder Woman educates people on what my daily regimen is like. Everyone works together as a team to keep me healthy, to keep me stable, and to just keep my spirits up.
If I miss to many days at a place I frequent people get worried that I am sick again. People worry constantly if I am ok, am I sick, how I am doing. I always send people here and when I know I can I give them my FB because every now and then I post on there to keep people up to date or at least let them know I am alive.
But most importantly Rare Disease Day this is a day we as a community can join together and get our voice heard not just for our illness but for everyones. Thanks to the internet we can hashtag and can learn about other peoples diseases, we can join together across the world and get our voice heard!! Which is a huge step in finding a cure or just getting education out there.
But I am gonna hop of here and enjoy my coffee
Love Y'all
Poppet
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