I just turned 53 a few days ago, and yet so much of what my body is experiencing is usually reserved for those in their elderly years - if at all. What's even stranger is that for years, I'm talking decades, I never knew anything was up with me. I always saw myself as a relatively healthy person, but little did I know what was brewing and awaited me. Exactly ten years ago my life, my health began to change, and it's been rolling downhill ever since - much to my dismay. I've done my best to take it in stride, even though I've had to walk this road entirely alone. I can't even really say I've only had Dr's. I mean I've had them, and they expressed interest in taking me on then after a year or two they would drop me. During the early years of the first major condition without the proper care I was unaware of what lie ahead although I did know none of it would be good. As of last year (8yrs into the first major condition) I finally was connected to the proper doc for it, and he assured me that he is definitely not going to drop me.
What I didn't expect was to be hit with multiple more major issues in just the span of a year. Six of them have come in just the last month. The most recent was just yesterday. I now have three more issues I need to find yet another new doc for. It just doesn't end. I don't even know if I dare talk about my issues cuz I already know most won't even know what any of it is (except maybe a few), and I totally get it. I didn't know what any of this stuff was either - until I found myself face to face with it.
It's so crazy. I sit here in tears thinking about what I just shared, and reflecting on just how isolating my life has truly been. I came into this world alone (I was abadoned at birth). I grew up alone (no family). I guess it would seem only fitting that I would endure such rare conditions alone, too. I mean, it's not like I have relateable, common issues. Some things I have are common, but the ones that have been plaguing me the longest aren't. I don't have things people can understand. I often try to educate people, and thankfully the vast majority are open to learning. This helps me feel not quite so alone, but the issues just keep piling on.
Just last month I was diagnosed with something that I need infusions for, but before those could begin I had another two issues arise, a couple complications, with one of my rare conditions, that's going to require two surgeries. I wasn't going to beat my immune system down before those. I feel like I need every fighting chance I can get, and that Dr agrees I should hold off on it for now. One of the surgeries is particularly risky given it involves my abdominal aorta. I was waiting for my annual CT scan last week to make sure there was nothing else I was contending with (and that nothing else would need to be done with this aorta), and now I found out I have other problems that are going to make doing the surgeries even more risky. So now I need to address this first before I can feel safe enough to schedule the surgeries which are desperately needed. I don't have a doc I can sit down and discuss all these things with, but I do know this - my days are numbered no matter what. To say my health is bad would be an understatement. It's just so crazy that at 53 I would have the body of an 80yr old, and even then I've known plenty of 80yr olds who were and are better off than I am.
I feel so beat down and defeated sometimes. It's so surreal that so much would come up so fast, and trying to figure out what's best for me is no easy task. Drs all have their say, but it's all with their respective specialty. Unfortunately, I don't have that one Dr that I can sit down and discuss it all with. I need to figure out where to put my time and energies especially with so much going on. With so many things going on I get overwhelmed, and then things turn out even more poorly which is why I need to keep things as simple and as efficient as possible. Drs want to get on everything right now, and while I appreciate that, surgery is what began me down one of my roads in the first place. So I have to trust they'll forgive me while I do what I can to give myself a fighting chance, especially when I realize, more fully than they do, just how much the odds are stacked against me. I had a feeling I was going to end up with more issues from this CT scan which is why I waited. I was bummed to find out what they were, but I'm glad I know now at the same time. All the surgeries are going to do is buy me some more time. My fate is already sealed. The one surgery could bring that fate about faster, too. So many decisions, so much to weigh.
The issues I deal with are:
1) Type B Aortic Dissection (Most dissections are Type A, and most dissections are very tiny in nature and are almost always spontaneous. Mine was not spontaneous, and is considered very large as it goes from the top of my right leg all the way up to my heart. In the abdominal area it branches into the left side a little bit as well.)
2) Coronary artery calcification (still mild at this point, but this is known as the widow maker)
3) Congestive heart failure (milder phase atm last I knew)
4) Artificial mitral valve
5) Axial Spondyloarthritis (This is the one I have to wait for treatment.)
6) May-Thurner Syndrome (one of the surgeries)
7) Partially collapsed lung
8) Emphysema
9) Nodule on the lung
10) Degenerative disc disease
11) I'm prone to strokes. I've already had a TIA, and have had several mild strokes despite being on an anti-coagulant aka blood thinner. I had pre-eclampsia during my 3rd pregnancy which automatically made me prone to these.
12) Ischemic small vessel disease (in the brain)
13) Raynauds phenomenon without gangrene
14) Hypothyroidism
15) Mixed hyperlipidemia
What I didn't expect was to be hit with multiple more major issues in just the span of a year. Six of them have come in just the last month. The most recent was just yesterday. I now have three more issues I need to find yet another new doc for. It just doesn't end. I don't even know if I dare talk about my issues cuz I already know most won't even know what any of it is (except maybe a few), and I totally get it. I didn't know what any of this stuff was either - until I found myself face to face with it.
It's so crazy. I sit here in tears thinking about what I just shared, and reflecting on just how isolating my life has truly been. I came into this world alone (I was abadoned at birth). I grew up alone (no family). I guess it would seem only fitting that I would endure such rare conditions alone, too. I mean, it's not like I have relateable, common issues. Some things I have are common, but the ones that have been plaguing me the longest aren't. I don't have things people can understand. I often try to educate people, and thankfully the vast majority are open to learning. This helps me feel not quite so alone, but the issues just keep piling on.
Just last month I was diagnosed with something that I need infusions for, but before those could begin I had another two issues arise, a couple complications, with one of my rare conditions, that's going to require two surgeries. I wasn't going to beat my immune system down before those. I feel like I need every fighting chance I can get, and that Dr agrees I should hold off on it for now. One of the surgeries is particularly risky given it involves my abdominal aorta. I was waiting for my annual CT scan last week to make sure there was nothing else I was contending with (and that nothing else would need to be done with this aorta), and now I found out I have other problems that are going to make doing the surgeries even more risky. So now I need to address this first before I can feel safe enough to schedule the surgeries which are desperately needed. I don't have a doc I can sit down and discuss all these things with, but I do know this - my days are numbered no matter what. To say my health is bad would be an understatement. It's just so crazy that at 53 I would have the body of an 80yr old, and even then I've known plenty of 80yr olds who were and are better off than I am.
I feel so beat down and defeated sometimes. It's so surreal that so much would come up so fast, and trying to figure out what's best for me is no easy task. Drs all have their say, but it's all with their respective specialty. Unfortunately, I don't have that one Dr that I can sit down and discuss it all with. I need to figure out where to put my time and energies especially with so much going on. With so many things going on I get overwhelmed, and then things turn out even more poorly which is why I need to keep things as simple and as efficient as possible. Drs want to get on everything right now, and while I appreciate that, surgery is what began me down one of my roads in the first place. So I have to trust they'll forgive me while I do what I can to give myself a fighting chance, especially when I realize, more fully than they do, just how much the odds are stacked against me. I had a feeling I was going to end up with more issues from this CT scan which is why I waited. I was bummed to find out what they were, but I'm glad I know now at the same time. All the surgeries are going to do is buy me some more time. My fate is already sealed. The one surgery could bring that fate about faster, too. So many decisions, so much to weigh.
The issues I deal with are:
1) Type B Aortic Dissection (Most dissections are Type A, and most dissections are very tiny in nature and are almost always spontaneous. Mine was not spontaneous, and is considered very large as it goes from the top of my right leg all the way up to my heart. In the abdominal area it branches into the left side a little bit as well.)
2) Coronary artery calcification (still mild at this point, but this is known as the widow maker)
3) Congestive heart failure (milder phase atm last I knew)
4) Artificial mitral valve
5) Axial Spondyloarthritis (This is the one I have to wait for treatment.)
6) May-Thurner Syndrome (one of the surgeries)
7) Partially collapsed lung
8) Emphysema
9) Nodule on the lung
10) Degenerative disc disease
11) I'm prone to strokes. I've already had a TIA, and have had several mild strokes despite being on an anti-coagulant aka blood thinner. I had pre-eclampsia during my 3rd pregnancy which automatically made me prone to these.
12) Ischemic small vessel disease (in the brain)
13) Raynauds phenomenon without gangrene
14) Hypothyroidism
15) Mixed hyperlipidemia
