- Joined
- May 17, 2022
- Posts
- 162
- Ratings
Greetings and Salutations! I hope you all are doing well!
It's been several months since my last introduction post, and since then there have been significant changes to my condition and the information surrounding it. I felt that I owed it to this community that I've become close with (especially survival) to give an explanation of what's going on regarding my health, and why I may have more frequent absences from the server in the future.
Nearly 2 years ago, in October of 2020, I started experiencing severe chest pains and tachycardia. Nothing we seemed to do would help, and after about 3 consecutive days of relentless pain, I was hospitalized. During this hospitalization, we had discovered that I also had neurological reactions to things such as needles; after they put the IV into my arm, I had gotten up to use to bathroom and my body suddenly felt extremely weak, my vision had become all white, and I collapsed to the floor with very little strength. I remember shortly after being surrounded by a team of several nurses, and my parents watching my by the bedside. My heart rate had spiked and then dropped to 10-20bpm. I have had reactions like this before in the past, however none were as severe as that. I had been admitted to the hospital and eventually discharged the next morning. All the testing they had done on me (chest x-ray, bloodwork, CT scan, etc.) had all come up inconclusive. Everything on paper looked mostly fine.
Since then, things have significantly progressed. I have officially been diagnosed with Ehlers Danlos, a very rare connective tissue disorder in which the body does not correctly produce or absorb collagen that helps hold all your cells together, because of the body having less/weaker collagen the body attempts to compensate with elastin, a weaker material that is more flexible/stretchy. It is a degenerative disorder with no cure, which means it is killing me. It is effecting my heart, blood vessels, joints and ligaments, muscles, etc. In particular, if I stand or sit for too long in one position blood begins to pool in my legs, turning them purple and the begin to feel like they're burning. My heart's upper aortic valve is bicuspid instead of tricuspid and is leaking blood, and due to the tissue in my heart being stretchy, my aortic valve is growing. This poses a potential threat to my life, as too much growth will lead to aortic dissection and tear my heart apart. At the moment, the rate of growth is mild, and since I'm not a professional athlete the rate of growth shouldn't increase significantly anytime soon. This aortic enlargement can eventually be treated with heart surgery, but that only "resets the timer" per say, so I have to wait before receiving that.
This condition also seems to be causing neurological issues. My vision seems to have a noticeable static wherever I look, and I'm often plagued with month long headaches and migraines, which also can't be treated with conventional medications. Other neurological abnormalities have manifested in ways similar to POTS, however my neurocardiogenic syncope and collapse has a list of various triggers of different levels of efficiency. I can have episodes like the ones I mentioned in the hospital if: I'm too hot, I'm dehydrated, I stand too long, I sit too long, I stand up too fast, I'm too active, a needle is placed into my skin, certain medications are administered to me (nitroglycerin and IV Benadryl cause the most severe and the most fast acting reactions). I am hoping to see a neurologist soon to potentially do more research onto how this will affect me in my future.
Unfortunately, despite over a year and a half of constant testing and doctors appointments, Mayo Clinic and Cleveland Clinic have rejected my referrals, citing they have no idea what's wrong or how to help. Ehlers Danlos is an extremely rare condition, so there are very few options for places to find treatment, and after speaking with one of the doctors from Cleveland Clinic, and various other specialists, they believe I have an entirely new and unstudied variant. My current steps are to work with pain management to attempt to find the cause of the pain and treat it, and visit a new rheumatologist for a second opinion and referral to another local hospital that may be able to provide me with more answers and treatment.
Unfortunately there are a lot of unanswered questions, such as how long I have left to live. There is no current professional estimate, since this is likely a new variant. Knowing the severity of my situation, I am cautious and take steps to avoid things that I am high risk for, such as strokes or heart issues.
As you might guess, it's difficult to be employed or pursue higher education while struggling with pain so frequently, or being absent frequently due to doctors visits, testing, or hospitalization. This is also why I am able to be so active on Manacube.
I've been extremely hesitant to post about this for several reasons, but the primary reason is because I don't want to seem like I'm using my unfortunate circumstances for peoples pity. I will not ask for anything from other players, and I ask that you'd please not treat me differently because of this new information. If you have further questions about my health or whatnot, I don't mind answering questions, but please understand that sometimes I spend the entire day talking about it, and discussing my body's decline is not my favorite subject.
I hope this explains some of my habits such as my unwillingness to sell cubits or spend irl money, or why I may be absent for prolonged times
I really do love Manacube and the community, it feels like another home to me, which is why I felt I should share this.
Thank you for your time! I hope to see you all around the server, though I'm primarily on Survival
-Surzy
It's been several months since my last introduction post, and since then there have been significant changes to my condition and the information surrounding it. I felt that I owed it to this community that I've become close with (especially survival) to give an explanation of what's going on regarding my health, and why I may have more frequent absences from the server in the future.
Nearly 2 years ago, in October of 2020, I started experiencing severe chest pains and tachycardia. Nothing we seemed to do would help, and after about 3 consecutive days of relentless pain, I was hospitalized. During this hospitalization, we had discovered that I also had neurological reactions to things such as needles; after they put the IV into my arm, I had gotten up to use to bathroom and my body suddenly felt extremely weak, my vision had become all white, and I collapsed to the floor with very little strength. I remember shortly after being surrounded by a team of several nurses, and my parents watching my by the bedside. My heart rate had spiked and then dropped to 10-20bpm. I have had reactions like this before in the past, however none were as severe as that. I had been admitted to the hospital and eventually discharged the next morning. All the testing they had done on me (chest x-ray, bloodwork, CT scan, etc.) had all come up inconclusive. Everything on paper looked mostly fine.
Since then, things have significantly progressed. I have officially been diagnosed with Ehlers Danlos, a very rare connective tissue disorder in which the body does not correctly produce or absorb collagen that helps hold all your cells together, because of the body having less/weaker collagen the body attempts to compensate with elastin, a weaker material that is more flexible/stretchy. It is a degenerative disorder with no cure, which means it is killing me. It is effecting my heart, blood vessels, joints and ligaments, muscles, etc. In particular, if I stand or sit for too long in one position blood begins to pool in my legs, turning them purple and the begin to feel like they're burning. My heart's upper aortic valve is bicuspid instead of tricuspid and is leaking blood, and due to the tissue in my heart being stretchy, my aortic valve is growing. This poses a potential threat to my life, as too much growth will lead to aortic dissection and tear my heart apart. At the moment, the rate of growth is mild, and since I'm not a professional athlete the rate of growth shouldn't increase significantly anytime soon. This aortic enlargement can eventually be treated with heart surgery, but that only "resets the timer" per say, so I have to wait before receiving that.
This condition also seems to be causing neurological issues. My vision seems to have a noticeable static wherever I look, and I'm often plagued with month long headaches and migraines, which also can't be treated with conventional medications. Other neurological abnormalities have manifested in ways similar to POTS, however my neurocardiogenic syncope and collapse has a list of various triggers of different levels of efficiency. I can have episodes like the ones I mentioned in the hospital if: I'm too hot, I'm dehydrated, I stand too long, I sit too long, I stand up too fast, I'm too active, a needle is placed into my skin, certain medications are administered to me (nitroglycerin and IV Benadryl cause the most severe and the most fast acting reactions). I am hoping to see a neurologist soon to potentially do more research onto how this will affect me in my future.
Unfortunately, despite over a year and a half of constant testing and doctors appointments, Mayo Clinic and Cleveland Clinic have rejected my referrals, citing they have no idea what's wrong or how to help. Ehlers Danlos is an extremely rare condition, so there are very few options for places to find treatment, and after speaking with one of the doctors from Cleveland Clinic, and various other specialists, they believe I have an entirely new and unstudied variant. My current steps are to work with pain management to attempt to find the cause of the pain and treat it, and visit a new rheumatologist for a second opinion and referral to another local hospital that may be able to provide me with more answers and treatment.
Unfortunately there are a lot of unanswered questions, such as how long I have left to live. There is no current professional estimate, since this is likely a new variant. Knowing the severity of my situation, I am cautious and take steps to avoid things that I am high risk for, such as strokes or heart issues.
As you might guess, it's difficult to be employed or pursue higher education while struggling with pain so frequently, or being absent frequently due to doctors visits, testing, or hospitalization. This is also why I am able to be so active on Manacube.
I've been extremely hesitant to post about this for several reasons, but the primary reason is because I don't want to seem like I'm using my unfortunate circumstances for peoples pity. I will not ask for anything from other players, and I ask that you'd please not treat me differently because of this new information. If you have further questions about my health or whatnot, I don't mind answering questions, but please understand that sometimes I spend the entire day talking about it, and discussing my body's decline is not my favorite subject.
I hope this explains some of my habits such as my unwillingness to sell cubits or spend irl money, or why I may be absent for prolonged times
I really do love Manacube and the community, it feels like another home to me, which is why I felt I should share this.
Thank you for your time! I hope to see you all around the server, though I'm primarily on Survival
-Surzy
