You'd think someone who never leaves the house would be better about updating once in a blue moon.
Then again, we're talking about me here, and well.
So, I'll go ahead and throw out the pertinent info from the last few months.
The tests that I was having done on my heart came back showing a problem called a-fib (atrial fibrillation, which is where the top part of my heart doesn't beat a steady lub-dub, it just kind of flutters or vibrates). That's what was causing my blood pressure issues, heart rate issues, dizziness, nausea, anxiety, fatigue, etc. There aren't really a lot of cures for this, but we started with the simplest solution first: medications. The first one didn't work and I felt even more tired on it. The next one the doctor suggested is more dangerous and FDA requires a minimum 3 day hospital stay to be monitored constantly (because it can improve the problem, but it could also make it much worse very quickly, as well as cause some potentially fatal rhythms). So I was in the hospital for 3 days early in October. Got a better feel of which symptoms were from which rhythms (I have more than one arrhythmia, but the a-fib is the most serious problem). I responded well to the medication and got to go home after my 7th EKG came back good/normal.
Since then, the medication has really been working well. I'm still having some fluttering, but it's less than it has been for the last year. The medication can still be dangerous and I have to be mindful of my diet to get enough salts (sodium and potassium), and I can no longer take any of the nausea medications I was taking before, as they can cause the heart medication to stop working properly. But it feels nice to feel my heart beating nice and steady in my chest most of the time.
Pain has been an issue lately. I had been getting injections into the joint where my hips and spine meets - the SI joint - but there's a limit on that, so I have to stop for a year to give my body time to recover. I did get the same injection in my tailbone as well recently with good results too. However, it did NOT work on my neck and I had a side effect that my doctor had never heard of, so we're not going to try it again. But earlier this week, I had a spinal nerve bundle block (they just inject something similar to the novocaine you get at the dentist right into 4 major nerves coming from the bottom of my spine). If the block helped with the pain, it meant I could have a more permanent-ish procedure done to burn the ends of those same nerves. Luckily, the block worked, and my lower back felt great for about a day. Now we just have to see if my insurance company will pay for the other procedure.
We're not really sure what's going on with my neck. Looking at my MRI, there's really no reason I should be having the pain and other symptoms I'm having (I have a herniated disc, but nothing severe to look at). But I am. And right now, the only thing that's working is pain medication. I'm currently looking for a diagnostic facility that is equipped to do the test I want/need to get a better look at what's going on. There aren't many of them in the US though, so it's not going to be easy to find or get in.
Last month, I had gotten an appointment to go to the Mayo Clinic where there is an entire team of specialists who focus on what I have and how it effects the entire body (instead of treating each part of it separately like I do now). My insurance company wound up being jerks though, telling me they would not authorize it until/unless I saw another doctor on their list. It basically goes like this: my early diagnosis of HEDS was made by a rheumatologist (who then sent me to a specialist for the official diagnosis). I saw that rheumatologist for pain management for a year until I changed insurance. Then I saw a new rheumatologist who didn't know about HEDS and didn't want to be the one responsible for that part of my care. I wound up asking my current pain management doc to take over the prescription I was getting from the rheumatologist, since it was a waste of time and resources to only see her for that. But my insurance company feels that that's not enough, and they think I need to see another rheumatologist. I don't actually NEED the rheumatologist because I was seeing that doctor for pain management, and now I have a pain management doctor. However, they still said no and told me to see the university hospital rheumatologist. And they can't get me in until the end of January. There's a good chance I'll have to see that doctor many times before they give the 'ok' for me to venture on to Mayo Clinic. I am likely looking at not getting to go until next winter now.
And in case things weren't fun enough, I'm having some kind of skin problem. I mostly just refer to it as the mystery rash because there is no other way to describe it, and it's been going on for almost a month. I'm taking two different antihistamines to help with the flare ups, but we don't really know what it is. And I don't have the time or energy to add a dermatologist to my list of doctors and list of things to do. The mystery rash will be on hold until other things get sorted out a bit more first.
I have quit working because of the medical chaos. When I was diagnosed with a-fib I decided it was time for me to quit, for the sake of myself and my patients. Even though the a-fib is better, I won't be going back to work for a while. My pain is still not controlled and I'm dependent on far too many medications that I can't take at work, nor could I even function on. My pain level is lower because I can rest now and don't have to force work on my body like I used to, which is nice.
But I miss work. I hope to get back to school some day and finish. I don't know if that will be in nursing or if I find something else that pleases me that I can do without further injuring myself. But for now.
Finally, I have an odd request. I can't explain much and I can't deal with it for whatever reason, but I would like to beg people to please put any kind of talk about animal abuse under LJ cuts with a warning/tag. Even if it's something to help put away the awful people who are doing these things, I still need a warning. Just mentioning this makes me feel like I might throw up and I'm already fighting back tears. This has been a trigger for me since long before I knew what a trigger was.
There have been a few stories and images floating around the various social networks lately, and I happened across the same one twice in a week and didn't sleep for a while, and cried every time I looked at my dog. I'm begging everyone, please please please put triggers or anything that might be difficult for anybody under a cut with appropriate warnings. It's just way too hard to deal with. (and please don't even mention that this part of the post was ever here. Only acknowledge it by appropriately warning people with tags/cuts/labels/etc)
So, I'll go ahead and throw out the pertinent info from the last few months.
The tests that I was having done on my heart came back showing a problem called a-fib (atrial fibrillation, which is where the top part of my heart doesn't beat a steady lub-dub, it just kind of flutters or vibrates). That's what was causing my blood pressure issues, heart rate issues, dizziness, nausea, anxiety, fatigue, etc. There aren't really a lot of cures for this, but we started with the simplest solution first: medications. The first one didn't work and I felt even more tired on it. The next one the doctor suggested is more dangerous and FDA requires a minimum 3 day hospital stay to be monitored constantly (because it can improve the problem, but it could also make it much worse very quickly, as well as cause some potentially fatal rhythms). So I was in the hospital for 3 days early in October. Got a better feel of which symptoms were from which rhythms (I have more than one arrhythmia, but the a-fib is the most serious problem). I responded well to the medication and got to go home after my 7th EKG came back good/normal.
Since then, the medication has really been working well. I'm still having some fluttering, but it's less than it has been for the last year. The medication can still be dangerous and I have to be mindful of my diet to get enough salts (sodium and potassium), and I can no longer take any of the nausea medications I was taking before, as they can cause the heart medication to stop working properly. But it feels nice to feel my heart beating nice and steady in my chest most of the time.
Pain has been an issue lately. I had been getting injections into the joint where my hips and spine meets - the SI joint - but there's a limit on that, so I have to stop for a year to give my body time to recover. I did get the same injection in my tailbone as well recently with good results too. However, it did NOT work on my neck and I had a side effect that my doctor had never heard of, so we're not going to try it again. But earlier this week, I had a spinal nerve bundle block (they just inject something similar to the novocaine you get at the dentist right into 4 major nerves coming from the bottom of my spine). If the block helped with the pain, it meant I could have a more permanent-ish procedure done to burn the ends of those same nerves. Luckily, the block worked, and my lower back felt great for about a day. Now we just have to see if my insurance company will pay for the other procedure.
We're not really sure what's going on with my neck. Looking at my MRI, there's really no reason I should be having the pain and other symptoms I'm having (I have a herniated disc, but nothing severe to look at). But I am. And right now, the only thing that's working is pain medication. I'm currently looking for a diagnostic facility that is equipped to do the test I want/need to get a better look at what's going on. There aren't many of them in the US though, so it's not going to be easy to find or get in.
Last month, I had gotten an appointment to go to the Mayo Clinic where there is an entire team of specialists who focus on what I have and how it effects the entire body (instead of treating each part of it separately like I do now). My insurance company wound up being jerks though, telling me they would not authorize it until/unless I saw another doctor on their list. It basically goes like this: my early diagnosis of HEDS was made by a rheumatologist (who then sent me to a specialist for the official diagnosis). I saw that rheumatologist for pain management for a year until I changed insurance. Then I saw a new rheumatologist who didn't know about HEDS and didn't want to be the one responsible for that part of my care. I wound up asking my current pain management doc to take over the prescription I was getting from the rheumatologist, since it was a waste of time and resources to only see her for that. But my insurance company feels that that's not enough, and they think I need to see another rheumatologist. I don't actually NEED the rheumatologist because I was seeing that doctor for pain management, and now I have a pain management doctor. However, they still said no and told me to see the university hospital rheumatologist. And they can't get me in until the end of January. There's a good chance I'll have to see that doctor many times before they give the 'ok' for me to venture on to Mayo Clinic. I am likely looking at not getting to go until next winter now.
And in case things weren't fun enough, I'm having some kind of skin problem. I mostly just refer to it as the mystery rash because there is no other way to describe it, and it's been going on for almost a month. I'm taking two different antihistamines to help with the flare ups, but we don't really know what it is. And I don't have the time or energy to add a dermatologist to my list of doctors and list of things to do. The mystery rash will be on hold until other things get sorted out a bit more first.
I have quit working because of the medical chaos. When I was diagnosed with a-fib I decided it was time for me to quit, for the sake of myself and my patients. Even though the a-fib is better, I won't be going back to work for a while. My pain is still not controlled and I'm dependent on far too many medications that I can't take at work, nor could I even function on. My pain level is lower because I can rest now and don't have to force work on my body like I used to, which is nice.
But I miss work. I hope to get back to school some day and finish. I don't know if that will be in nursing or if I find something else that pleases me that I can do without further injuring myself. But for now.
Finally, I have an odd request. I can't explain much and I can't deal with it for whatever reason, but I would like to beg people to please put any kind of talk about animal abuse under LJ cuts with a warning/tag. Even if it's something to help put away the awful people who are doing these things, I still need a warning. Just mentioning this makes me feel like I might throw up and I'm already fighting back tears. This has been a trigger for me since long before I knew what a trigger was.
There have been a few stories and images floating around the various social networks lately, and I happened across the same one twice in a week and didn't sleep for a while, and cried every time I looked at my dog. I'm begging everyone, please please please put triggers or anything that might be difficult for anybody under a cut with appropriate warnings. It's just way too hard to deal with. (and please don't even mention that this part of the post was ever here. Only acknowledge it by appropriately warning people with tags/cuts/labels/etc)