Last Thursday was my one week follow up appointment with the eye surgeon. He said my eyes were healing better than he’d hoped, given my prior poor wound healing experiences. He cleared me for wearing my contacts again, as long as they felt comfortable to me, and told me to take them out periodically to check and see how my eyes felt without them in. Apparently having them in disguises aches and the like from your perception of them, odd but okay. He also told me to slide back into life as I felt I could. I did ask him about my left eye, which I seem to be having more issues with. Prior to the surgery I was Myopic, or near sighted, with great vision for up close things like reading. Since the surgery that has not been the case with my left eye. He said he wouldn’t worry about it yet, that he had to do “an extensive amount of repairs’ to my left eye and it would likely ‘work itself out’ as it healed. I return to see him in six weeks for a recheck.
So, I have started wearing my contacts again, not full time like I did before, but moving back into it. I seem to notice the vision change in my left eye more when I have them in than I do when I am wearing my glasses. I haven’t attempted driving yet partially because my truck has a bad tire and I do not really want to drive it until I can afford to have them replaced. They all need replacing, but the one has a bad spot that could get nasty should it blow. My vehicle is already some what off balance thanks to the wheelchair and wheelchair lift. For now, my husband is doing all the driving in his truck. It’s older and clunky and huge, and incase you missed the drift….I don’t care to drive it. It means, however, that I either don’t get to use my wheelchair or that he has to manually lift the thing out of the back of his truck bed. Since the chair itself weighs a lot, I’ve been going without it. Luckily, I don’t have to go many places. Some places, like the grocery, have the little carts available so I use those. But over all my hip has gotten a bit more use here and there, causing extreme pain and ache. On the upside, however, with me not having to leave the house daily for work my husband brought the chair into the house and I have been using it. That is something I couldn’t do before because I needed the chair in the truck to go back and forth to my job, and our home wasn’t set up in a way for me to be able to get the chair in the house by myself. I was using an office chair to push myself backwards from room to room.
Today I need to go to the grocery, but will wait for him to be done working and come home so that we can go together. I think, honestly, that I am still a bit put off about driving myself anyway, even if it’s just a jot down the road to the grocery. Not because of the tire, I can drive slowly enough on side roads that it shouldn’t be an issue for so small an errand. No, it’s my eyes. Not only for the driving, but you have to read labels in the store. I really hope my vision returns to what it was pre-surgery, but I suppose if it doesn’t I will adapt to this also. Still, it is nice to have some measure of comfort knowing that the repairs to my eyes, so far, look successful. It will probably buy me a few more years of good vision before rearing its ugly head again. Hopefully, it will do as we hope and prevent a spontaneous retina separation.
Tuesday, October 26, 2010
Tuesday, October 19, 2010
Cryo surgery for Lattice Degeneration
Cryo surgery for Lattice Degeneration
I’ve been gone for a while, so I haven’t updated my blog. I took some time off for the birth of our first grandchild. I was able to be with my daughter during delivery and it was simply joyful. She is an amazing person that made it through a natural delivery without any medications. The little guy is 3 weeks old now and I miss them all terribly, but I had to come back home to my own responsibilities. Once I got home, I made the promised call to my eye doctor, who promptly called the eye surgeon and set up an appointment for a couple of days later. So we trekked up to Columbia for the appointment, we being my husband and I, he happened to be on vacation that week.
The appointment with the eye surgeon, a retina specialist did not go as we thought it would. They did the dilatation and he spent a considerable amount of time carefully checking each eye, then asked if it would be okay for him to go check some facts concerning the combination of Lattice Degeneration and Ehlers-Danlos Syndrome. He came back and began to explain. It seems the degeneration is my eyes was much further advanced than anticipated, with the left eye being worse than the right. He said I had multiple stage degeneration in all four quadrants of each eye. He was so alarmed about it that he asked me to roll over to the hospital and have surgery on the right eye within an hour, with a return trip to the hospital the next day for the surgery on the left eye. We discussed the options, with me explaining to him that my own research showed that the cryo surgery seem to be the better option (versus laser surgery), with a higher success rate for people with EDS. He said that was what he had gone to look up and that he had found the same answer. So it was decided. His staff kicked in to full gear calling our insurance to get it pre-approved and calling someone from the hospital to come over and escort my husband and me to the outpatient surgery unit.
They do the surgery while you are fully awake, numbing the eye so that you cannot feel it. I have an issue with needles so they gave me 5mg of valium to help with the anxiety. It didn’t work, which I tried to tell them would be the case, but alas they did not listen. I have such a high tolerance for narcotics that I don’t even notice 5mg of valium. The high tolerance came into play again with the numbing agent because I was able to feel what he was doing after the first shot, so he had to do another. All in all, it is a terribly odd feeling to have your eyeballs rolled around while someone is freezing parts of the back of them, during which your pupil is dilated to the maximum so that the surgeon can see the back of your eyeball but making you, for the most part, blind. All in all, it hurt but not too terribly bad. My eye was heavily padded and tapped over to keep it from opening, while it is numb and dilated you cannot feel if the cornea is getting scraped so you must keep the bandage on until the numbing agent wears off. It was painful but not unbearable, so we checked out and headed home. Plans cancelled for the rest of the week, which were to include a long over due fishing trip.
Thursday we returned to the hospital where I was again given the 5mg dose of valium and it again, didn’t work. The numbing shot didn’t work either but the doctor decided to push on through it rather than do another injection. It hurt like bloody hell. As I said before, there was more damage on the left eye, so more work had to be done. By the time the procedure was over, I just wanted to ball up in a corner and die. I don’t know why he didn’t listen that I could feel it. He chose instead to say that it was hurting worse because I was ‘squeezing’ my eyes shut. Well, duh…it’s kind of instinctive to do that when someone is doing something that hurts like that. It didn’t matter, it was over. The eye was a throbbing, swollen, painful thing that was stuck in my head with nothing to be done about it now. It made my whole face hurt and messed up my sinuses to boot. They don’t give you pain killers to take home, by the way, so you just get to suffer it out on your own. If screaming didn’t make it hurt worse, I think I might have just let a good one go.
Home we came, with doctors orders to ‘lay around and take it easy for the next 7 days’ and to ‘stay indoors, avoiding lights’ because the dilation of the pupils would last for days.
I spent a lot of time sleeping, ironically. Sleeping is something I don’t usually do well because of the EDS. I mean really, when you sleep your muscles go lax and then you dislocate or sublex something, wake up to put it back, then repeat. It doesn’t exactly make for great rest. I guess in this instance it was purely self-defense, my mind knew no other way to get through it than to make me pass out cold for short periods. So I went with it, not much else I could do. Doing anything, like trying to watch TV, get on the computer or read just made the pain in my eyes worse. Keeping them closed made them feel a little better, so closed it was.
I started writing this on Monday, 5 days post-op for the right eye, 4 for the left. The right eye is recovering a lot faster than the left, which is sensible since less work was done to it. Still, I have to write this in even shorter bursts than normal because it makes both eyes water. I hope to goodness this surgery works because I don’t honestly think I could endure that again. They would have to knock me out completely. It was just too painful. I am glad I did it, it is much better than playing roulette with a retina separation. Still I have to wonder sometimes, how much else will EDS demand of me? I cannot keep my fingers from dislocating without the aid of special splints. I cannot keep my hip in the socket. I cannot keep my ribs in place. I cannot keep my shoulders in place. I cannot sleep for even a couple of hours comfortably. I cannot take medication to help with the pain because I have such a high tolerance to all of it that it is rendered useless. I cannot stop or even reduce the amount of pain I am in every single day.
And yet, in the end, none of that matters. It really doesn’t. It’s just hard to remember that some days, when the pain is worse than usual, when the demands are higher than normal, when people are meaner than they need to be. None of it matters one fig. What does matter, and what I cling to so dearly, is that I be the best person I can be each and every moment of each and every day, to try and be thoughtful and kind; understanding and patient; calm and accepting. Too bad most days I fail at that goal, but at least I still try, EDS cannot take that from me.
I’ve been gone for a while, so I haven’t updated my blog. I took some time off for the birth of our first grandchild. I was able to be with my daughter during delivery and it was simply joyful. She is an amazing person that made it through a natural delivery without any medications. The little guy is 3 weeks old now and I miss them all terribly, but I had to come back home to my own responsibilities. Once I got home, I made the promised call to my eye doctor, who promptly called the eye surgeon and set up an appointment for a couple of days later. So we trekked up to Columbia for the appointment, we being my husband and I, he happened to be on vacation that week.
The appointment with the eye surgeon, a retina specialist did not go as we thought it would. They did the dilatation and he spent a considerable amount of time carefully checking each eye, then asked if it would be okay for him to go check some facts concerning the combination of Lattice Degeneration and Ehlers-Danlos Syndrome. He came back and began to explain. It seems the degeneration is my eyes was much further advanced than anticipated, with the left eye being worse than the right. He said I had multiple stage degeneration in all four quadrants of each eye. He was so alarmed about it that he asked me to roll over to the hospital and have surgery on the right eye within an hour, with a return trip to the hospital the next day for the surgery on the left eye. We discussed the options, with me explaining to him that my own research showed that the cryo surgery seem to be the better option (versus laser surgery), with a higher success rate for people with EDS. He said that was what he had gone to look up and that he had found the same answer. So it was decided. His staff kicked in to full gear calling our insurance to get it pre-approved and calling someone from the hospital to come over and escort my husband and me to the outpatient surgery unit.
They do the surgery while you are fully awake, numbing the eye so that you cannot feel it. I have an issue with needles so they gave me 5mg of valium to help with the anxiety. It didn’t work, which I tried to tell them would be the case, but alas they did not listen. I have such a high tolerance for narcotics that I don’t even notice 5mg of valium. The high tolerance came into play again with the numbing agent because I was able to feel what he was doing after the first shot, so he had to do another. All in all, it is a terribly odd feeling to have your eyeballs rolled around while someone is freezing parts of the back of them, during which your pupil is dilated to the maximum so that the surgeon can see the back of your eyeball but making you, for the most part, blind. All in all, it hurt but not too terribly bad. My eye was heavily padded and tapped over to keep it from opening, while it is numb and dilated you cannot feel if the cornea is getting scraped so you must keep the bandage on until the numbing agent wears off. It was painful but not unbearable, so we checked out and headed home. Plans cancelled for the rest of the week, which were to include a long over due fishing trip.
Thursday we returned to the hospital where I was again given the 5mg dose of valium and it again, didn’t work. The numbing shot didn’t work either but the doctor decided to push on through it rather than do another injection. It hurt like bloody hell. As I said before, there was more damage on the left eye, so more work had to be done. By the time the procedure was over, I just wanted to ball up in a corner and die. I don’t know why he didn’t listen that I could feel it. He chose instead to say that it was hurting worse because I was ‘squeezing’ my eyes shut. Well, duh…it’s kind of instinctive to do that when someone is doing something that hurts like that. It didn’t matter, it was over. The eye was a throbbing, swollen, painful thing that was stuck in my head with nothing to be done about it now. It made my whole face hurt and messed up my sinuses to boot. They don’t give you pain killers to take home, by the way, so you just get to suffer it out on your own. If screaming didn’t make it hurt worse, I think I might have just let a good one go.
Home we came, with doctors orders to ‘lay around and take it easy for the next 7 days’ and to ‘stay indoors, avoiding lights’ because the dilation of the pupils would last for days.
I spent a lot of time sleeping, ironically. Sleeping is something I don’t usually do well because of the EDS. I mean really, when you sleep your muscles go lax and then you dislocate or sublex something, wake up to put it back, then repeat. It doesn’t exactly make for great rest. I guess in this instance it was purely self-defense, my mind knew no other way to get through it than to make me pass out cold for short periods. So I went with it, not much else I could do. Doing anything, like trying to watch TV, get on the computer or read just made the pain in my eyes worse. Keeping them closed made them feel a little better, so closed it was.
I started writing this on Monday, 5 days post-op for the right eye, 4 for the left. The right eye is recovering a lot faster than the left, which is sensible since less work was done to it. Still, I have to write this in even shorter bursts than normal because it makes both eyes water. I hope to goodness this surgery works because I don’t honestly think I could endure that again. They would have to knock me out completely. It was just too painful. I am glad I did it, it is much better than playing roulette with a retina separation. Still I have to wonder sometimes, how much else will EDS demand of me? I cannot keep my fingers from dislocating without the aid of special splints. I cannot keep my hip in the socket. I cannot keep my ribs in place. I cannot keep my shoulders in place. I cannot sleep for even a couple of hours comfortably. I cannot take medication to help with the pain because I have such a high tolerance to all of it that it is rendered useless. I cannot stop or even reduce the amount of pain I am in every single day.
And yet, in the end, none of that matters. It really doesn’t. It’s just hard to remember that some days, when the pain is worse than usual, when the demands are higher than normal, when people are meaner than they need to be. None of it matters one fig. What does matter, and what I cling to so dearly, is that I be the best person I can be each and every moment of each and every day, to try and be thoughtful and kind; understanding and patient; calm and accepting. Too bad most days I fail at that goal, but at least I still try, EDS cannot take that from me.
Tuesday, September 14, 2010
Hip Therapy again
9 14 2010
Hip therapy.
Today I go in for my second round of shots in my hip. I had this done a year ago and it helped a lot, so we decided to do it again. This time though, the doctor used a much ‘hotter’ solution for the injection. The injections go into my ligaments and get them to create scar tissue, which draws up the ligament and makes it some what tighter. Of course with EDS, it doesn’t last for very long. They re-stretch in about a year. The shots themselves are some what painful, but the following few days are the worst. It doesn’t help one bit that I hate needles with a passion.
Before my appointment for my shots, however, I have errands to run. I have to stop by the eye doctors and talk with them about the surgeon he is going to refer me to. Then I have to go by the MO Career Center as part of my Unemployment Benefits. Their purpose is to help me find a job. So far, I haven’t had much luck on my own. I do get interviews, but when I show up in my wheelchair I can tell by the look in their eyes that I might as well go home. No one wants to hire me. The only ones that might are the ones that ‘have to’ because of their employment guidelines. Unfortunately those are also not very good paying jobs. In my case, the chances of me finding a good paying job are pretty slim. I have a ton of training and experience, but no one wants the wheels. It is rather a downer, in some ways, because I want to work.
That’s a subject for another post, I think. At any rate, I’m dreading the shots today. Hoping they work but dreading the process. I do find it hard to move around after the fact, so it’s probably a good thing I already have to drive with my left foot. I injured my right foot on the job, dislocated some bones and stretched out the tendons, now it’s too painful for me to use it on the gas/break pedals. I had to learn to drive with my left foot while I had it in the walking boot (camwalker) for 6 weeks anyway. Interesting thing unlearning to use the right foot and learning to use the left foot on all the pedals. Luckily for me, I drove a clutch for years when I was younger, so the concept of using the left foot on the pedals wasn’t a completely foreign concept to my brain. The rotten part is that I have to drive barefoot. For what ever reason I can’t feel the pedals very well with a shoe on and have much better control without the shoe. Driving a large vehicle (because of the wheelchair lift) having good control is a must.
I’m off, I’ll write again soon. Laters!
Hip therapy.
Today I go in for my second round of shots in my hip. I had this done a year ago and it helped a lot, so we decided to do it again. This time though, the doctor used a much ‘hotter’ solution for the injection. The injections go into my ligaments and get them to create scar tissue, which draws up the ligament and makes it some what tighter. Of course with EDS, it doesn’t last for very long. They re-stretch in about a year. The shots themselves are some what painful, but the following few days are the worst. It doesn’t help one bit that I hate needles with a passion.
Before my appointment for my shots, however, I have errands to run. I have to stop by the eye doctors and talk with them about the surgeon he is going to refer me to. Then I have to go by the MO Career Center as part of my Unemployment Benefits. Their purpose is to help me find a job. So far, I haven’t had much luck on my own. I do get interviews, but when I show up in my wheelchair I can tell by the look in their eyes that I might as well go home. No one wants to hire me. The only ones that might are the ones that ‘have to’ because of their employment guidelines. Unfortunately those are also not very good paying jobs. In my case, the chances of me finding a good paying job are pretty slim. I have a ton of training and experience, but no one wants the wheels. It is rather a downer, in some ways, because I want to work.
That’s a subject for another post, I think. At any rate, I’m dreading the shots today. Hoping they work but dreading the process. I do find it hard to move around after the fact, so it’s probably a good thing I already have to drive with my left foot. I injured my right foot on the job, dislocated some bones and stretched out the tendons, now it’s too painful for me to use it on the gas/break pedals. I had to learn to drive with my left foot while I had it in the walking boot (camwalker) for 6 weeks anyway. Interesting thing unlearning to use the right foot and learning to use the left foot on all the pedals. Luckily for me, I drove a clutch for years when I was younger, so the concept of using the left foot on the pedals wasn’t a completely foreign concept to my brain. The rotten part is that I have to drive barefoot. For what ever reason I can’t feel the pedals very well with a shoe on and have much better control without the shoe. Driving a large vehicle (because of the wheelchair lift) having good control is a must.
I’m off, I’ll write again soon. Laters!
Friday, September 10, 2010
What is EDS?
EDS stands for Ehlers-Danlos Syndrome. In technical speak it’s a genetic defect of the Type II Collagen. There are different ‘types’ of EDS, broken down into categories of symptoms and doctors/geneticists lump you into the ‘type’ that lines up with the majority or the severest of your symptoms. This can lead to more confusion, however, because most people with EDS have cross over symptoms of the other ‘types’.
So, in non-technical speak- what is EDS? It’s something different for each person that has it, to the degree they have it and even to the degree that each of the individual symptoms of it manifests. To understand EDS you have to understand that Collagen is ta substance in the body that occurs naturally. It’s responsible for making things stretchy, by things I actually mean EVERYTHING. Think for a moment on everything in your body that stretches. The most obvious are tendons/ligaments that allow your joints to move. With out stretching your arms wouldn’t bend, nor your knees. That is obvious enough, right? Okay, now spread your mind out further and try thinking of other things that stretch. Collagen is a major ingredient in the cosmetic industry because collagen is what makes your skin stretchy. As you age you loose your collagen and wrinkles form. The often over looked stretchy things are blood vessels, eyes and internal organs. Think of how a doctor measures your blood pressure, it is by the expansion and contraction rate of the blood vessels as they carry the blood in pulses away from and back to your heart. Without collagen those vessels would not expand and contract.
Now, the basics aside, people with EDS actually have too much collagen. Things are too stretchy. Probably the most dramatic of the types involves the skin and leads to the person being able to pull their skin away from their underlying structures. It has been featured on television shows and medical mysteries series. It’s very easy to see and understand that there is something obviously not ‘normal’ going on. In the other cases of EDS, it’s not nearly so easy or clear. The vascular type mainly affects the blood vessels and these people are very prone bleeding, scarring and sudden death due to aneurysms. This type killed my father when he was only 29, although it was not discovered until my own diagnosis that this was the case.
In hypermobility type, which is the ‘type’ that I fall into, the joints are all very loose and dislocate or sublex (partially dislocate) very easily. This type is often seen in circus shows with contortionists who bend in ways that make a normal person cringe. Beyond the obvious joints that are affected, knees, elbows, etc, there are the ones that people do not even consider to be joints. These include the small bones in your feet and hands or your ribs. A bear hug can literally cause me hours of agony by displacing ribs. I personally dislocate just about everything to some degree, my most stable joints are actually my elbows, which is opposite of the ‘standard’ hypermobility case.
As I have aged my joints have become more unstable, and bouts of extreme stress seem to accelerate jumps in the progression. I have had difficulty all my life, but because EDS was considered to be so “rare” it was never even discussed. I do recall one doctor saying I was far to hypermobile when I was very young. I was having difficulty in gym class and my gym teacher gave me an ‘unsatisfactory’ mark, when asked to explain why, he said it was because he’d never seen a skinnier lazy kid. Every time I was asked to do something that involved running, I would run a bit and fall down. His assessment was that I was falling down to get out of the running. The doctor’s assessment was I was hypermobile and having trouble with actually physically running. The problem followed me through my entire school career.
About 10 years ago I underwent a situation of extreme stress that seemed to set in motion a rapid progression of some symptoms. My joints became more unstable, my skin thinner and easier to scar and tear, bruising came with slight touches. It has progressed in fits and starts since then, with my hip becoming the largest ‘problem’. After two years of trying to figure out why surgeries didn’t help with my knee hyperextensions and why my hip would just not stay in place I ended up at the Mayo Clinic. There was diagnosed in the Genetics Dept has having EDS, hypermobility type. It opened up a whole new world. I learned that the things I had been experiencing were common problems with EDS’ers and I began to feel less and less like I was totally alone with this. The problem is that EDS is still considered to be a ‘rare’ defect so it’s not taught in medical schools outside of a short paragraph in a book. Trying to find a doctor that even knows what EDS is, much less what to do and not to do with it/for it is a real challenge.
So, in non-technical speak- what is EDS? It’s something different for each person that has it, to the degree they have it and even to the degree that each of the individual symptoms of it manifests. To understand EDS you have to understand that Collagen is ta substance in the body that occurs naturally. It’s responsible for making things stretchy, by things I actually mean EVERYTHING. Think for a moment on everything in your body that stretches. The most obvious are tendons/ligaments that allow your joints to move. With out stretching your arms wouldn’t bend, nor your knees. That is obvious enough, right? Okay, now spread your mind out further and try thinking of other things that stretch. Collagen is a major ingredient in the cosmetic industry because collagen is what makes your skin stretchy. As you age you loose your collagen and wrinkles form. The often over looked stretchy things are blood vessels, eyes and internal organs. Think of how a doctor measures your blood pressure, it is by the expansion and contraction rate of the blood vessels as they carry the blood in pulses away from and back to your heart. Without collagen those vessels would not expand and contract.
Now, the basics aside, people with EDS actually have too much collagen. Things are too stretchy. Probably the most dramatic of the types involves the skin and leads to the person being able to pull their skin away from their underlying structures. It has been featured on television shows and medical mysteries series. It’s very easy to see and understand that there is something obviously not ‘normal’ going on. In the other cases of EDS, it’s not nearly so easy or clear. The vascular type mainly affects the blood vessels and these people are very prone bleeding, scarring and sudden death due to aneurysms. This type killed my father when he was only 29, although it was not discovered until my own diagnosis that this was the case.
In hypermobility type, which is the ‘type’ that I fall into, the joints are all very loose and dislocate or sublex (partially dislocate) very easily. This type is often seen in circus shows with contortionists who bend in ways that make a normal person cringe. Beyond the obvious joints that are affected, knees, elbows, etc, there are the ones that people do not even consider to be joints. These include the small bones in your feet and hands or your ribs. A bear hug can literally cause me hours of agony by displacing ribs. I personally dislocate just about everything to some degree, my most stable joints are actually my elbows, which is opposite of the ‘standard’ hypermobility case.
As I have aged my joints have become more unstable, and bouts of extreme stress seem to accelerate jumps in the progression. I have had difficulty all my life, but because EDS was considered to be so “rare” it was never even discussed. I do recall one doctor saying I was far to hypermobile when I was very young. I was having difficulty in gym class and my gym teacher gave me an ‘unsatisfactory’ mark, when asked to explain why, he said it was because he’d never seen a skinnier lazy kid. Every time I was asked to do something that involved running, I would run a bit and fall down. His assessment was that I was falling down to get out of the running. The doctor’s assessment was I was hypermobile and having trouble with actually physically running. The problem followed me through my entire school career.
About 10 years ago I underwent a situation of extreme stress that seemed to set in motion a rapid progression of some symptoms. My joints became more unstable, my skin thinner and easier to scar and tear, bruising came with slight touches. It has progressed in fits and starts since then, with my hip becoming the largest ‘problem’. After two years of trying to figure out why surgeries didn’t help with my knee hyperextensions and why my hip would just not stay in place I ended up at the Mayo Clinic. There was diagnosed in the Genetics Dept has having EDS, hypermobility type. It opened up a whole new world. I learned that the things I had been experiencing were common problems with EDS’ers and I began to feel less and less like I was totally alone with this. The problem is that EDS is still considered to be a ‘rare’ defect so it’s not taught in medical schools outside of a short paragraph in a book. Trying to find a doctor that even knows what EDS is, much less what to do and not to do with it/for it is a real challenge.
Thursday, September 9, 2010
Lattice Degeneration and Retina Tearing.
Months ago I noticed a black line in my left eye that resembled a piece of lint. At first I figured something was on my contact, took it out and cleaned it several times and realized that it wasn’t. I just blew it off and figured I would check it at my regular eye exam, no big deal. Well, yesterday was my regular eye exam and turns out I was wrong. In the time since my last eye exam apparently I’ve had a significant increase in degeneration and the ‘lint’ was actually a ‘floater’ caused by fluid leaking into my retina. Now, I’ve been seeing my eye doctor for 25 years, he’s an excellent doctor, and a really genuine good person. I’ve never, ever seen him that upset about something. He berated me firmly, but gently, for not calling him right away when the floater appeared and then reiterated the fact that we that have EDS are more prone to sudden retina separation. Not getting treatment in time could lead to irreversible blindness. He wrote with big letters in permanent marker “HIGH RISK OF RETINAL DETACHMENT!!!” and “GET DR. IMMEDIATELY IF PT CALLS!” Okay, that act alone sort of drove home the point.
He went through what was going on with it after the dilation and exam and told me I have some options but with me having EDS he wasn’t at all confident about which option would be the best. He asked me to do some digging for info on my end while he did the same on his. Together we will decide what the best course of action is from there. He wrote down the specifics to make it easier for me to do searches on and David and I went home.
Now, I hate overreacting to things and I try not to, but the idea of going blind just hit me like a 2x4 upside the head. I’ve dealt with fractures, surgeries, daily dislocations and been stuck in the wheelchair because of my hip refusing to stay in the socket. I’ve adapted to things in a ton of different ways, replacing glasses with plastic cups, only purchasing certain shapes of cups so that it’s easier for me to hold and less likely I’ll drop, replacing my glass measuring cups with plastic ones, buying pints of milk because gallons are too heavy, cutting my hair short so I don’t have to try and blow dry it, etc. The list goes on and on. All of them were thought out and accepted because it was/is the best course of action. I’ve done my best to just roll with the punches and not be all drama about them. But going blind?? It was just a ‘full stop’ moment. I can deal with not walking, giving up hiking, giving up my horse, giving up solo grocery shopping, not riding my bike anymore, not being able to go for a nice long stress relieving run, but going blind? BLIND?!?!
So my day yesterday rather was blah. It took me the whole day to just wrap my mind around the idea that I could go blind. Once I did get it wrapped up and plopped a bow on top I returned to my more normal attitude of ‘just another part of life with EDS’ attitude. Then I started searching for information, education is key to just about any condition. I haven’t made any decisions on what I want to do yet. For one, I don’t really want to pursue any further ‘treatments’ until after our first grandbaby arrives. After that, well, we shall see. Some of the things I read highly suggest being preemptive, having surgery to try and stop further thinning and tearing which could possibly stop the spontaneous retina separation from occurring. Others suggest the wait and see approach but if this or that happens then you are forced into a full blown surgery to try and repair the separated retina, which has a much higher failure rate than the preemptive surgery. So, for now at least I will wait. Once the grandbaby is here and I’m back home from helping out his mommy, then I will take up the cause again and make a decision.
Laters =)
He went through what was going on with it after the dilation and exam and told me I have some options but with me having EDS he wasn’t at all confident about which option would be the best. He asked me to do some digging for info on my end while he did the same on his. Together we will decide what the best course of action is from there. He wrote down the specifics to make it easier for me to do searches on and David and I went home.
Now, I hate overreacting to things and I try not to, but the idea of going blind just hit me like a 2x4 upside the head. I’ve dealt with fractures, surgeries, daily dislocations and been stuck in the wheelchair because of my hip refusing to stay in the socket. I’ve adapted to things in a ton of different ways, replacing glasses with plastic cups, only purchasing certain shapes of cups so that it’s easier for me to hold and less likely I’ll drop, replacing my glass measuring cups with plastic ones, buying pints of milk because gallons are too heavy, cutting my hair short so I don’t have to try and blow dry it, etc. The list goes on and on. All of them were thought out and accepted because it was/is the best course of action. I’ve done my best to just roll with the punches and not be all drama about them. But going blind?? It was just a ‘full stop’ moment. I can deal with not walking, giving up hiking, giving up my horse, giving up solo grocery shopping, not riding my bike anymore, not being able to go for a nice long stress relieving run, but going blind? BLIND?!?!
So my day yesterday rather was blah. It took me the whole day to just wrap my mind around the idea that I could go blind. Once I did get it wrapped up and plopped a bow on top I returned to my more normal attitude of ‘just another part of life with EDS’ attitude. Then I started searching for information, education is key to just about any condition. I haven’t made any decisions on what I want to do yet. For one, I don’t really want to pursue any further ‘treatments’ until after our first grandbaby arrives. After that, well, we shall see. Some of the things I read highly suggest being preemptive, having surgery to try and stop further thinning and tearing which could possibly stop the spontaneous retina separation from occurring. Others suggest the wait and see approach but if this or that happens then you are forced into a full blown surgery to try and repair the separated retina, which has a much higher failure rate than the preemptive surgery. So, for now at least I will wait. Once the grandbaby is here and I’m back home from helping out his mommy, then I will take up the cause again and make a decision.
Laters =)
Wednesday, September 1, 2010
Vocational Rehabilitation
Vocational Rehabilitation
Yesterday was my appointment with Voc Rehab. I made the appointment at the suggestion of a friend who was once in a similar position as I am. I do not know about other states, but Missouri has a Vocational Rehabilitation department that is a sub-department of the Missouri Department of Elementary and Secondary Education. Voc Rehab is a tax payer funded department that exists to help persons with disabilities find employment. They offer Physical and/or Occupational Therapy, on the job training, assistive devices to enable you to work- such as help purchasing or completely purchasing wheelchairs, lifts, prosthetics, specialized devices or software, and other such items as would make it possible for the disabled to obtain and sustain gainful employment. For instance, because my fingers dislocate, become cramped and are very painful when I attempt to type for longer than short periods with longer rest periods, they would purchase Dragon Naturally Speaking software for me. That would allow me to still ‘type’ letters and emails, but by speaking instead of using the keyboard.
I reported a few minutes early for my appointment and waited in the lobby with 5 others waiting for the group orientation. When the time arrived they lead us all to a conference room and gave a slide show presentation on what Voc Rehab does, how and for whom. After than we were met with individually by the counselors, so that no one had to disclose personal information in the group setting, while waiting our turns, one of the other 5 decided to just up and leave. It was a mother and son, the son was the one seeking help, but the mother seemed to be running the show. She decided, and announced loudly to those of us still in the room after the counselors had left, that this was a total waste of time.
When my turn came I met with the district supervisor. He was a very nice fellow, around my age and obviously intelligent. He asked for my pre-filled out paper work, glanced it over, then began asking me questions. Mostly his questions were regarding EDS, as expected, since most people do not even know what it is. After about 20 minutes of Q & A he stated that there really wasn’t much he could do for me at this point. He said that I should seriously consider applying for SSD and once on SSD to come back and see him again. He stated that because of the numerous restrictions they would have to ask for from a potential employer, they would need to have the back up support of me being on SSD to justify it. Also, because it is partially income based and David makes more than the maximum limit, they wouldn’t be able to help with much of anything other than job placement. Effectively one cancelled out the other. However, if you are on SSD, all of the income guidelines are automatically dismissed. So, for me to get maximum benefit from Voc Rehab I need to get on SSD.
When (and if) I get on SSD, then they can help me in all of the ways they offer. He also explained that there is an option with SSD that is basically a “work incentive”. If you want to work, you can earn up to $900 a month without it affecting your SSD benefit amount. With the additional work incentive, however, you can actually make more than that. Essentially what the work incentive is, is a form that Voc Rehab fills out and submits to SSD for you. On this form they list what it costs for you to actually be able to work. In my case, they would figure an amount for the maintenance on my wheelchair, maintenance on my lift, braces, extra medications, etc. Once SS approved it then I could actually get a job earning the $900 minimum PLUS the amount of the work incentive and not loose my SSD benefits. He figured with this set up, I could be making a month nearly what I was making working full time.
I will write more later, I’ve worked on this periodically all day long and now my fingers are just too tired. Lol. TH
Yesterday was my appointment with Voc Rehab. I made the appointment at the suggestion of a friend who was once in a similar position as I am. I do not know about other states, but Missouri has a Vocational Rehabilitation department that is a sub-department of the Missouri Department of Elementary and Secondary Education. Voc Rehab is a tax payer funded department that exists to help persons with disabilities find employment. They offer Physical and/or Occupational Therapy, on the job training, assistive devices to enable you to work- such as help purchasing or completely purchasing wheelchairs, lifts, prosthetics, specialized devices or software, and other such items as would make it possible for the disabled to obtain and sustain gainful employment. For instance, because my fingers dislocate, become cramped and are very painful when I attempt to type for longer than short periods with longer rest periods, they would purchase Dragon Naturally Speaking software for me. That would allow me to still ‘type’ letters and emails, but by speaking instead of using the keyboard.
I reported a few minutes early for my appointment and waited in the lobby with 5 others waiting for the group orientation. When the time arrived they lead us all to a conference room and gave a slide show presentation on what Voc Rehab does, how and for whom. After than we were met with individually by the counselors, so that no one had to disclose personal information in the group setting, while waiting our turns, one of the other 5 decided to just up and leave. It was a mother and son, the son was the one seeking help, but the mother seemed to be running the show. She decided, and announced loudly to those of us still in the room after the counselors had left, that this was a total waste of time.
When my turn came I met with the district supervisor. He was a very nice fellow, around my age and obviously intelligent. He asked for my pre-filled out paper work, glanced it over, then began asking me questions. Mostly his questions were regarding EDS, as expected, since most people do not even know what it is. After about 20 minutes of Q & A he stated that there really wasn’t much he could do for me at this point. He said that I should seriously consider applying for SSD and once on SSD to come back and see him again. He stated that because of the numerous restrictions they would have to ask for from a potential employer, they would need to have the back up support of me being on SSD to justify it. Also, because it is partially income based and David makes more than the maximum limit, they wouldn’t be able to help with much of anything other than job placement. Effectively one cancelled out the other. However, if you are on SSD, all of the income guidelines are automatically dismissed. So, for me to get maximum benefit from Voc Rehab I need to get on SSD.
When (and if) I get on SSD, then they can help me in all of the ways they offer. He also explained that there is an option with SSD that is basically a “work incentive”. If you want to work, you can earn up to $900 a month without it affecting your SSD benefit amount. With the additional work incentive, however, you can actually make more than that. Essentially what the work incentive is, is a form that Voc Rehab fills out and submits to SSD for you. On this form they list what it costs for you to actually be able to work. In my case, they would figure an amount for the maintenance on my wheelchair, maintenance on my lift, braces, extra medications, etc. Once SS approved it then I could actually get a job earning the $900 minimum PLUS the amount of the work incentive and not loose my SSD benefits. He figured with this set up, I could be making a month nearly what I was making working full time.
I will write more later, I’ve worked on this periodically all day long and now my fingers are just too tired. Lol. TH
Friday, August 20, 2010
Adjusting to life off work
Life goes on, as the saying goes. More paperwork filed out, more decisions made. We did receive another offer on the house, so that makes 3 now. We turned this one down also, however, because they wanted us to pay the full bill for closing costs. It was closer price wise, but when you deduct the closing costs, it was too low. I have heard of people wanting to split the closing with the seller, but never one wanting the seller to pay all of it. Since we are in no big hurry or have any pressing need to sell the house, we have opted to wait for the right offer to come along. As TDH says, every month we are here is more we pay off on it, lol, so it only benefits us to stay. I understand people ‘bargain hunting’ but get real.
Anyway, now that I’m not drop dead tired constantly I can diddle with typing this blog, take a break, diddle a bit more, take a break. It’s an ongoing adjustment, being without work. I’m adapting better than I had thought I would. Of course, so far I’ve been rather busy with all the legal issues and so forth, as that settles down the pace of life will change again. It is SO nice though, to work a bit, take a break, work a bit, take a break. I can get a bit done that way, without dislocating everything since I can stop when I feel it flaring up and then resume when it has settled down again. I can pace myself, unlike a typical 8 hour work day were you are trying to cram in as much as humanly possible. I can rotate what I’m doing too, so I’m not over taxing the same joints. One day diddle with my plants, one day clean the floors, one day dusting (who knew that would dislocate your shoulders??), one day folding laundry that TDH has so graciously done and brought upstairs for me. I spent a whole hour the other day working on my t-shirt drawer! It was dumped when the guys moved the furniture out for the new carpet to be put in, I just never had the energy or finger/wrist strength left to deal with it after working all day/week.
One perk I figured would happen, but wasn’t positive it would, was that I always feel so much better when things are organized and clean. I just feel more settled and sure about things. For one thing, when you have to seriously think about HOW you are going to walk across a space and mentally plan what you can grab if the hip gives out, or what spot you should aim for if you can’t stay up right, the LACK of clutter is very important! A straight line is much easier to walk than one that weaves around piles of stuff. Same for mail or filing, it’s much easier to flip to what I need with minimal dislocation of fingers, than it is to have to pick up a pile of junk to sift through and try to find what I need- and popping fingers and wrists out of place in the process. Yes, I DO file stuff… partially to satisfy that inner control freak, but mostly because I get tired of hearing “Honey? Do you know where ……. is?” and it never fails is something important- like the light bill, or property tax receipt- that is needed right away. So it serves dual purpose, calming the inner control freak and it keeps me from having to strain fingers/wrists trying to find it.
I am looking into things to keep myself ‘busy’, too. I can’t commit to ‘normal’ hobbies because most are too physically demanding. So I’m going to ‘un-commit’ to a few, lol, if that makes sense. I do better when I have a game plan, so I’m making myself one. I’m working on a schedule that is looking something like this:
2 days a week- 1 hour (total- not necessarily all at once) of:
writing (blog or stories);
searching out something interesting to photograph;
actually photographing them;
cleaning something in the house (ie: kitchen, bathroom, etc.);
cleaning something that needs it (ie: old files that need shredding, storing photos in archival boxes);
baking/cooking (I love whole grain breads and making pasta from scratch, etc.);
making the homemade soaps and lotions I love- no artificial crud for me- my skin is too sensitive with EDS;
and lastly
Learn 1 new thing a week.
I figure just figuring out how to get all that done without dislocating something should take me at least 2 weeks. Plus for some of it I have to enlist the aid of others, mainly TDH or my best friends. I can’t carry up the boxes of photographs that need going through and stored properly, or carry in groceries, etc. Plus I have to figure out how to do it on a very limited budget, lol, which is going to be a challenge in and of itself.
Suggestions?
Anyway, now that I’m not drop dead tired constantly I can diddle with typing this blog, take a break, diddle a bit more, take a break. It’s an ongoing adjustment, being without work. I’m adapting better than I had thought I would. Of course, so far I’ve been rather busy with all the legal issues and so forth, as that settles down the pace of life will change again. It is SO nice though, to work a bit, take a break, work a bit, take a break. I can get a bit done that way, without dislocating everything since I can stop when I feel it flaring up and then resume when it has settled down again. I can pace myself, unlike a typical 8 hour work day were you are trying to cram in as much as humanly possible. I can rotate what I’m doing too, so I’m not over taxing the same joints. One day diddle with my plants, one day clean the floors, one day dusting (who knew that would dislocate your shoulders??), one day folding laundry that TDH has so graciously done and brought upstairs for me. I spent a whole hour the other day working on my t-shirt drawer! It was dumped when the guys moved the furniture out for the new carpet to be put in, I just never had the energy or finger/wrist strength left to deal with it after working all day/week.
One perk I figured would happen, but wasn’t positive it would, was that I always feel so much better when things are organized and clean. I just feel more settled and sure about things. For one thing, when you have to seriously think about HOW you are going to walk across a space and mentally plan what you can grab if the hip gives out, or what spot you should aim for if you can’t stay up right, the LACK of clutter is very important! A straight line is much easier to walk than one that weaves around piles of stuff. Same for mail or filing, it’s much easier to flip to what I need with minimal dislocation of fingers, than it is to have to pick up a pile of junk to sift through and try to find what I need- and popping fingers and wrists out of place in the process. Yes, I DO file stuff… partially to satisfy that inner control freak, but mostly because I get tired of hearing “Honey? Do you know where ……. is?” and it never fails is something important- like the light bill, or property tax receipt- that is needed right away. So it serves dual purpose, calming the inner control freak and it keeps me from having to strain fingers/wrists trying to find it.
I am looking into things to keep myself ‘busy’, too. I can’t commit to ‘normal’ hobbies because most are too physically demanding. So I’m going to ‘un-commit’ to a few, lol, if that makes sense. I do better when I have a game plan, so I’m making myself one. I’m working on a schedule that is looking something like this:
2 days a week- 1 hour (total- not necessarily all at once) of:
writing (blog or stories);
searching out something interesting to photograph;
actually photographing them;
cleaning something in the house (ie: kitchen, bathroom, etc.);
cleaning something that needs it (ie: old files that need shredding, storing photos in archival boxes);
baking/cooking (I love whole grain breads and making pasta from scratch, etc.);
making the homemade soaps and lotions I love- no artificial crud for me- my skin is too sensitive with EDS;
and lastly
Learn 1 new thing a week.
I figure just figuring out how to get all that done without dislocating something should take me at least 2 weeks. Plus for some of it I have to enlist the aid of others, mainly TDH or my best friends. I can’t carry up the boxes of photographs that need going through and stored properly, or carry in groceries, etc. Plus I have to figure out how to do it on a very limited budget, lol, which is going to be a challenge in and of itself.
Suggestions?
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