Surzy Life & Health Update

Surzy

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#1
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. :p

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 :p

-Surzy
 

EvanTech

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#2
Your story has always hit deep Surzy and I hope you know we are all here to support you the best we can. I hope you continue to stay strong and do your best despite the unthinkable. Always feel free to reach out <3
 

Surzy

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#3
Your story has always hit deep Surzy and I hope you know we are all here to support you the best we can. I hope you continue to stay strong and do your best despite the unthinkable. Always feel free to reach out <3
Thank you so much, Evan, you and so many others here in manacube have really made this server feel like home for me. I will continue to push forward, even if it's one day at a time, working to improve myself and the world around me. Thank you for always being there to listen and talk, it's been good to see you again lately! :)
 

gabby(turt)

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#4
Hi surzy poo
I am so proud of u for posting this, I know it was hard. As your friend, I want you to know that I am always here to talk about anything that is bothering you or if you just need someone to talk to. You can always dm me if you need anything :).
I am so sorry that this is happening to you and I hope that you can find medication or anything that can help with your pain. I know you will continue to stay strong through this journey!!!
I love seeing you online and I hope you continue to play survival when you can. <333
 

Surzy

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#5
Hi surzy poo
I am so proud of u for posting this, I know it was hard. As your friend, I want you to know that I am always here to talk about anything that is bothering you or if you just need someone to talk to. You can always dm me if you need anything :).
I am so sorry that this is happening to you and I hope that you can find medication or anything that can help with your pain. I know you will continue to stay strong through this journey!!!
I love seeing you online and I hope you continue to play survival when you can. <333
Gabby, thank you very much for the kind words. I am so thankful to have made friends like you and so many others here that I know I can depend on. As difficult as it was to openly talk about this, I'm glad the people I care about are able to more clearly understand my situation.
People like you make survival such an enjoyable place. I don't plan on leaving or giving up anytime soon, so don't worry! :D

Thank you, friend. :)
 

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#6
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. :p

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 :p

-Surzy
Damn, that's tough. Hope you get better.
 

Surzy

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#8
DECEMBER UPDATE 2022:

It has been a very wild ride the last few months. Unfortunately, things haven't improved much. Whatever good news there has been, always comes with unanswered questions or more issues.

Since my last post, I'm now seeing Neurology, Pain Management, and Behavioral Psychology (specifically therapy for those with degenerative diseases or disorders). Just with the other doctors, I once again was subject to months of testing. Nuclear medicine bone scan, MRIs, a sleep deprived EEG, etc. The good news is, they have not found any serious issues, especially in my brain. Unfortunately that also means they don't know what specifically is causing me so much pain, and don't have any answers for me. They've also begun giving me different medications to try out, which has been messy. I've had to be very aware of what things I could and could not take together. For a while, there was a risk of serious bodily injury from taking Ibuprofen and some other common medications while on one specific prescription. Another issue was the side effects of the medications, while most were manageable (dizziness, difficulty concentrating, constantly tired, more erratic emotions), others were not. Specifically, for a few weeks my heart would pause multiples times each minute, the entire weeks, without ceasing. Coincidentally, I stopped taking the med that started causing that, and the pausing and corresponding pain dissipated. I am on new meds now, which do not seem to be causing any major issues, but they also are not reducing my pain.

Good news is I am now enrolled in college and have a job of sorts! I am taking 1 course at a time, each taking 6 weeks, all online. It is a slow process, but at least it's progress. I am pursuing a Bachelors degree in Psychology, and after that I plan to go to Law School and become an attorney. School is certainly taking up some time, but not as much as I first assumed it might.
As for my job, I am an author! Specifically, I am writing poetry ebooks, and release a new one each month. Writing has always been a passion of mine, and I picked up poetry 6 years ago, and after years of it, I figured I might as well monetize it. I do not plan on advertising my writings on Manacube, specifically because all my works are published under my legal name, and not my online persona/alias. I am certainly no "New York Times Best Selling Author" but I enjoy what I do, and it's nice to be payed for something I already did.

I've been reluctant to make an update post, because frankly these last few months have been the most soul shattering, discouraging months of my life. Outside of my health, many of my interpersonal relationships have been disastrous, and I've been slipping into a deeper and deeper depression. I am working my way out of it slowly but surely. Being more active on Manacube is part of my attempt to do something to stop isolating myself, and forcing myself to do something. My hope is that soon I may feel okay to rejoin discord calls, and return back to my normal self. December is always a difficult month for me, especially around my birthday on the 23rd, so it may take some time.

I consider many of you good friends, and some of the people I am currently closest with I met on Manacube. Hopefully, I continue to make more friends and memories with you all while I continue my journey!

Thank you all for your time, and your understanding!
 
Last edited:

HollowShell

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#10
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. :p

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 :p

-Surzy
damn man that's really sad, I lost a uncle to ED a few years ago. I hope you eventually find a specialist somewhere who's willing to take you in.
God speed surzy my thoughts are with you and your family. And save that money for doctors.
 

Surzy

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#11
damn man that's really sad, I lost a uncle to ED a few years ago. I hope you eventually find a specialist somewhere who's willing to take you in.
God speed surzy my thoughts are with you and your family. And save that money for doctors.
Thank you very much, I'm seeing a lot of specialists for different things now, but unfortunately there's not many Ehlers Danlos specialists in my area, and with the test results all looking inconclusive, I may have an entirely new variant. There's one doctor who does specialize in Ehlers Danlos, and I'd see him like once a year, but he's reviewing my charts right now to see if he wants to take me as a patient. I'm sorry to hear about your uncle, it's especially painful to lose family, especially knowing there's nothing you can really do to help them before they pass.
 

HollowShell

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#12
Thank you very much, I'm seeing a lot of specialists for different things now, but unfortunately there's not many Ehlers Danlos specialists in my area, and with the test results all looking inconclusive, I may have an entirely new variant. There's one doctor who does specialize in Ehlers Danlos, and I'd see him like once a year, but he's reviewing my charts right now to see if he wants to take me as a patient. I'm sorry to hear about your uncle, it's especially painful to lose family, especially knowing there's nothing you can really do to help them before they pass.
yeah, I just like to take comfort in remembering how he was in the years before he got really ill. Also take comfort in knowing that hopefully his experiences will contribute to eventually finding a cure down the line
 

Surzy

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#13
March Update 2023

Hi Manacube, I hope you're all doing well! I'm back with a health update for March, because we have finally learned what is causing the pain, and unfortunately its not good news.

Last week I finally got the opportunity to meet with an Ehlers-Danlos specialist locally. He will unfortunately not take me on as a patient, but he was willing to take the time to see me as a favor to my family. We learned a few things while I was there.

Firstly, my body does not produce energy properly. On a cellular level, the food we eat is turned into nutrients and our cells absorb those nutrients in the mitochondria to create energy. For some reason, my body's cells are not allowing the nutrients in, and cannot absorb it for energy. This is somewhat of an issue, because the body needs a certain amount of energy to maintain homeostasis (keep your heart pumping, keep your body temp regulated, etc.) and so my body is prioritizing homeostasis for the little energy it has. This is why I am tired all the time. To deal with this, I now have to take like 5-7 supplements every morning, and in a few months, I should hopefully have a lot more energy. (The supplements give my body the enzymes it needs to allow the nutrients into the cells and process them for energy)

The headaches I've been having are a result of the ligaments in my neck being weakened (because of the lack of collagen). Your head is connected to your neck and shoulder through your spine, your muscles and your ligaments. Some of these ligaments are weak, and my scalene muscles in my neck have to compensate for the improper weight distribution, but the scalene muscles are struggling to do so, and having spasms. The spasms give me headaches of varying intensities. Interestingly, he was able to confirm this by pressing on a part of my scalene muscles, and instantly the pain disappeared.
The next step for dealing with this is getting a DMX scan (Digital Motion X-ray of my cervical spine. I am not sure what can be done to treat the ligaments in my neck and strengthen them, but it may eventually come down to surgery.

The chest-pain I have been experiencing for nearly 3 years was determined to be the result of my heart. Specifically, my aortic root. My aortic root is enlarged, and when I am experiencing chest pain, it is because my aortic root is blocking arteries that give my heart the blood and oxygen that it needs to sustain itself. My heart is unintentionally depriving itself of oxygen, which makes sense why it hurts more when I am exercising or doing physically demanding work. Unfortunately, this may pose a severe threat to me. If my heart enlarges any more than it did in 2021 (it likely may have) I will need heart surgery to prevent my heart from essentially exploding.
I am scheduling a CTA of my chest and heart in the coming weeks, and we will see how severe it is getting.

I also asked him which variant of Ehlers-Danlos he believes I have, and he said that I am likely either Classical-Atypical or Vascular-Atypical, since I share symptoms of both. We are hoping it is NOT vascular, since vascular is one of the most lethal variants.

Other relevant but less important information is that I was diagnosed with inappropriate sinus tachycardia, which just makes it more difficult for the doctors to prescribe me heart related medications without it dropping my blood pressure and activating my Neurocardiogenic Syncope and Collapse/POTS.

If I am being honest with myself, I am seriously struggling with this new information. I am definitely glad to have some solid answers but these are definitely not the answers I wanted. The existential discomfort is finally hitting me and causing bad anxiety.
Once again, I'm not sharing this for pity or sympathy, but because I feel like the community that has become a family to me deserves to know. I may be less active now while I struggle with this new information, but I am not quitting. I just need a minute to come to terms with this all.

Thank you all for your time. I love you all immensely.

-Surzy
 

Hallowqueen

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#14
Surzy, my dear I am so sorry to hear that it is not good news. I can't begin to imagine what you're feeling right now, although I can imagine in some ways it is a relief to have some answers.

You are a credit to the community, and I am truly honoured to have met you and consider you a close friend. Take as much time as you need to process things, I and the rest of the community will be waiting with open arms for when you feel ready to return! If you ever need anything at all, you know you can always reach out to me and I will be more than happy to listen and help wherever I can.

I wish you the absolute best of luck, you deserve nothing but positivity and light in your life. It is incredible that you're able to stay so positive throughout all this despite the cards you have been dealt.

Love you, Mr Surzy Surz <3
 

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#15
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. :p

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 :p

-Surzy
We love you Surzy
 

Surzy

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#17
May 2023 Update
So we got the results of the scans. Fortunately, the heart related results have been good. I am still experiencing aortic ectasia (my upper aorta is enlarged) but it went from 4.1cm to 3.9cm, which is good. If it went to 4.2 I would have likely needed invasive heart surgery, but fortunately it seems like I will not need heart surgery for a while.
Unfortunately, the scans showed that all of the ligaments in my neck are extremely unstable. We are still looking to see what we should do about it next. It could require physical therapy, perhaps steel rods in my neck, we don't really know. I'm not even supposed to crack my neck anymore (something I am not thrilled about but its better than damaging myself further lol).
We do not have any other health updates, and I have not been seeing as many doctors as usual, since most of them are unsure how to treat me, and I've gotten just about every test I could.
Unfortunately, things aren't going great in other respects either. My mental health and interpersonal relationships have been strained, especially lately, However, I'm continuing to see my behavioral psychologist/counselor who specializes in working with people who have degenerative conditions like mine.
I will try to be more active, however it's been difficult to motivate myself to get on my computer, still, it's great getting online and saying hello and catching up with everyone :)
I appreciate everyones time and support. Thank you again, my Manacube family <3
-Surzy
 

Spogger

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#18
May 2023 Update
So we got the results of the scans. Fortunately, the heart related results have been good. I am still experiencing aortic ectasia (my upper aorta is enlarged) but it went from 4.1cm to 3.9cm, which is good. If it went to 4.2 I would have likely needed invasive heart surgery, but fortunately it seems like I will not need heart surgery for a while.
Unfortunately, the scans showed that all of the ligaments in my neck are extremely unstable. We are still looking to see what we should do about it next. It could require physical therapy, perhaps steel rods in my neck, we don't really know. I'm not even supposed to crack my neck anymore (something I am not thrilled about but its better than damaging myself further lol).
We do not have any other health updates, and I have not been seeing as many doctors as usual, since most of them are unsure how to treat me, and I've gotten just about every test I could.
Unfortunately, things aren't going great in other respects either. My mental health and interpersonal relationships have been strained, especially lately, However, I'm continuing to see my behavioral psychologist/counselor who specializes in working with people who have degenerative conditions like mine.
I will try to be more active, however it's been difficult to motivate myself to get on my computer, still, it's great getting online and saying hello and catching up with everyone :)
I appreciate everyones time and support. Thank you again, my Manacube family <3
-Surzy
Surzy, I think I can speak for everybody in the ManaCube community when I say that we all hope that you end up all right in the end. It is so unfortunate to be hearing about your state, really do hope that you can make it through. We love you too surzy <3
 

Guki

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#19
Always been a pleasure to share the server with you, Surzy! I have had nothing but positve things to say about you from the day I met you, up until the moment writing this. I hope that in the near future, you and your medical team will be able to figure some solution out that will help better treat the symptoms you are dealing with. I am glad that you have not allowed this diagnosis to alter who you are as a person. This diagnosis may have changed your life, but it hasn't changed you. Hope nothing but the best for you right now, and in the future.

Hopefully see you soon,

- Guki
 

xStephie

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#20
Hi surzy. Always a pleasure seeing you in game. Sending prayers you can get something worked out medicate help. Don't forget to take time for your mental health. Whether that be escaping into minecraft or taking a relaxing bath. Mental health is always the most important in these situations. Wish you the best surzy