First, to catch up on the situation with my insurance and my County Assistance caseworker. When last we spoke, I was told that if I sent in my paperwork again on May 18 there would be no problem. We faxed it all over again on the 18th as instructed, then called every day to see if she had received it. She finally called my wife again on the 21st, and said that just got it and I'd get a letter in 7-10 days telling me if I still had insurance. Keep in mind my insurance was due to run out on the 24th. I called her back several times that day, and never got through. I also left some very rude messages that in retrospect I probably should not have left. Though to be fair, I had done everything I was supposed to do, and there is no reason for me to be penalized for the inefficiency of their office.
So the next day, since I never got to speak to my caseworker, I went down to visit after my appointment with my orthopedic surgeon (more on that in a minute). When I got there I spoke to a Very Nice Girl at the front desk who could not figure out at all why there was a problem with my account. My caseworker, however, was not there. Very Nice Girl told me to wait while she found out what was going on. She eventually got back to me and told me that was all handled and I had nothing to worry about. I never saw my caseworker.
I never heard anything back from Septa.
As I said earlier, I had an appointment on May 22 with my orthopedic surgeon. We discussed the surgical options for my left knee. He told me that he'd be scoping my knee, and once in he'd decide if he'd be doing a lateral release or microfracture surgery. Lateral release has a 80% success rate, while microfracture has a 67-70% success rate. The recovery is about three months of very intense physical therapy.
Apparently, however, when the surgery fails, it fails bad. In those cases, people frequently come out worse than when they went in. But since my knee has been getting worse to the point where I had pretty much accepted the fact that I'd be using a wheelchair almost full-time within a year or so, and the worst case scenario is the CRPS I'm already in the early stages of, there's really no reason not to get it. I just have to decide when it will be and set up the appointment. I'm looking at either late August or late December.
If anyone has had this surgery, or knows anyone that has, please tell me about the experience in the comments.
Right now my bipolar is Kinda Manic.
Right now my pain level is 5.
Monday, June 15, 2009
Saturday, May 16, 2009
My Disablist Week
I had some unpleasant disablist experiences this week that I feel I should share. There will be an update on two of them later as they are ongoing. Well, there might be an update on one of them, because I doubt they'll actually get back to me.
The Big One really goes back to last week, when as I mentioned, I had awful conversation with my County Assistance caseworker. On May 1, I received a packet from County Assistance that I had to fill out in order to keep my insurance. Not a problem, I have to do this all the time. We all do, it's part of being In The System. It had to be in the office by May 8, not postmarked, on her desk. I also had the option to fill it out online. Not trusting the post office, I went with that.
So I do the online form on May 7 (I admit I procrastinated a little but I got it done on time), and when I finish I'm confronted with a page that lists all the stuff I need to mail or fax by May 8. Are you fucking kidding me? I did it online so I wouldn't have to mail anything in. And it's a long list, including stuff we don't even have and can't even get. I call my caseworker the next day (May 8 - The Deadline) in a panic - "What do I do? I don't have this. I can't get it. I can't lose my insurance. I can't go off my meds. I can't stop seeing my doctors. I did it online so I wouldn't have to mail it in." Her response was basically "Yea, well, not my problem." She did, though, eventually agree to extend the deadline to May 13 (more on that in a minute), which was something. But she said if I didn't get it in by then I would lose my insurance and "no one wants that to happen." If I can be literary for a second, the word "wants" was practically dripping, that's the only way to describe it.
Over the weekend we rounded up as much of the stuff as we could and bright and early in the morning Monday (May 11), my father-in-law drove almost an hour down to Philly to get me to drive me a half-hour to Trenton to get my birth certificate (he's awesome and I can't thank him enough). After which, my wife faxed what we had to my caseworker from work. Again I say, this was May 11, two days before the new May 13 deadline. I called the caseworker to make sure she got it and had to leave a message on her voice mail. I did this again on Tuesday, May 12, and again on Thursday, May 14.
On Friday, May 15 I received a letter from County Assistance saying that my insurance was to be canceled on May 24 because she did not receive my paperwork. This letter was dated May 12, one day before the new deadline. I called my caseworker and left yet another message. My wife called and left some messages. The caseworker called her back. They continued to play phone tag and never actually spoke to each other. Though the caseworker did eventually say that if we fax over the paperwork again on Monday (May 18) everything will be fine and I won't lose my insurance. My wife saved the voice mail, as I said before, she's awesome. We'll see how this plays out.
Less important, though more embarrassing, was my grocery shopping trip on Thursday. When I go shopping I use one of those folding grocery carts, because, well, I can't really carry anything. Most of the bus drivers let me get on in the back on the bus, where I sit in the seat closest to the back door and hold the cart by said door. It's easy and it's out of everyone's way. Sometimes I get a driver who feels like being a dick. Once a driver wouldn't let me on and made me wait for the next bus. My ice cream melted. This time however, the driver made me unload my cart and put each bag individually on the bus then bring the cart on folded, then do the same in reverse when it was time to get off.
He said it was Septa's policy and that it was a safety issue. How is it safer to make a person on a cane get off and on the bus repeatedly while carrying bags heavier than his doctor wants him to be lifting? Oh, and the driver didn't even kneel the bus when I was getting on and gave me a dirty look when I demanded he kneel it when I was getting off, in fact, the driver was incredibly rude to me throughout the whole incident (which, by the way, is not the first disablist incident I've dealt with from Septa, not by a long shot). I would, however, like to give some points to the woman that helped me get my stuff off the bus, thanks.
When I called Septa's customer service number to complain, the woman I spoke to told me that it was their policy and that is no exception for disabled passengers. Her attitude also told me, not in so many words, to go fuck myself when I pointed out the discriminatory nature of their policies. I simply can't understand why they want to make it hard to disabled people to buy food. When I asked for a number for someone higher up to ask why these policies are in place, she told me someone would be calling me back. I don't think anyone will, my wife and friends think they will though. Again, we'll see what happens.
On a much, much less serious note, on Wednesday, we went to the Franklin Institute. I used a wheelchair because, well, I can't walk for that long. While looking at an exhibit, a man tried explaining said exhibit to me like I was an idiot. Why do people always make that assumption - that if you're in a wheelchair you're stupid? It happens all the time, and from what I hear it happens to everyone. Baffling.
I do have some positive, not-me, health news while I'm posting. My mom got the results back from her PET scan and her cancer's gone. This is obviously very good news.
Right now my bipolar is Kinda Level.
Right now my pain level is 4.
The Big One really goes back to last week, when as I mentioned, I had awful conversation with my County Assistance caseworker. On May 1, I received a packet from County Assistance that I had to fill out in order to keep my insurance. Not a problem, I have to do this all the time. We all do, it's part of being In The System. It had to be in the office by May 8, not postmarked, on her desk. I also had the option to fill it out online. Not trusting the post office, I went with that.
So I do the online form on May 7 (I admit I procrastinated a little but I got it done on time), and when I finish I'm confronted with a page that lists all the stuff I need to mail or fax by May 8. Are you fucking kidding me? I did it online so I wouldn't have to mail anything in. And it's a long list, including stuff we don't even have and can't even get. I call my caseworker the next day (May 8 - The Deadline) in a panic - "What do I do? I don't have this. I can't get it. I can't lose my insurance. I can't go off my meds. I can't stop seeing my doctors. I did it online so I wouldn't have to mail it in." Her response was basically "Yea, well, not my problem." She did, though, eventually agree to extend the deadline to May 13 (more on that in a minute), which was something. But she said if I didn't get it in by then I would lose my insurance and "no one wants that to happen." If I can be literary for a second, the word "wants" was practically dripping, that's the only way to describe it.
Over the weekend we rounded up as much of the stuff as we could and bright and early in the morning Monday (May 11), my father-in-law drove almost an hour down to Philly to get me to drive me a half-hour to Trenton to get my birth certificate (he's awesome and I can't thank him enough). After which, my wife faxed what we had to my caseworker from work. Again I say, this was May 11, two days before the new May 13 deadline. I called the caseworker to make sure she got it and had to leave a message on her voice mail. I did this again on Tuesday, May 12, and again on Thursday, May 14.
On Friday, May 15 I received a letter from County Assistance saying that my insurance was to be canceled on May 24 because she did not receive my paperwork. This letter was dated May 12, one day before the new deadline. I called my caseworker and left yet another message. My wife called and left some messages. The caseworker called her back. They continued to play phone tag and never actually spoke to each other. Though the caseworker did eventually say that if we fax over the paperwork again on Monday (May 18) everything will be fine and I won't lose my insurance. My wife saved the voice mail, as I said before, she's awesome. We'll see how this plays out.
Less important, though more embarrassing, was my grocery shopping trip on Thursday. When I go shopping I use one of those folding grocery carts, because, well, I can't really carry anything. Most of the bus drivers let me get on in the back on the bus, where I sit in the seat closest to the back door and hold the cart by said door. It's easy and it's out of everyone's way. Sometimes I get a driver who feels like being a dick. Once a driver wouldn't let me on and made me wait for the next bus. My ice cream melted. This time however, the driver made me unload my cart and put each bag individually on the bus then bring the cart on folded, then do the same in reverse when it was time to get off.
He said it was Septa's policy and that it was a safety issue. How is it safer to make a person on a cane get off and on the bus repeatedly while carrying bags heavier than his doctor wants him to be lifting? Oh, and the driver didn't even kneel the bus when I was getting on and gave me a dirty look when I demanded he kneel it when I was getting off, in fact, the driver was incredibly rude to me throughout the whole incident (which, by the way, is not the first disablist incident I've dealt with from Septa, not by a long shot). I would, however, like to give some points to the woman that helped me get my stuff off the bus, thanks.
When I called Septa's customer service number to complain, the woman I spoke to told me that it was their policy and that is no exception for disabled passengers. Her attitude also told me, not in so many words, to go fuck myself when I pointed out the discriminatory nature of their policies. I simply can't understand why they want to make it hard to disabled people to buy food. When I asked for a number for someone higher up to ask why these policies are in place, she told me someone would be calling me back. I don't think anyone will, my wife and friends think they will though. Again, we'll see what happens.
On a much, much less serious note, on Wednesday, we went to the Franklin Institute. I used a wheelchair because, well, I can't walk for that long. While looking at an exhibit, a man tried explaining said exhibit to me like I was an idiot. Why do people always make that assumption - that if you're in a wheelchair you're stupid? It happens all the time, and from what I hear it happens to everyone. Baffling.
I do have some positive, not-me, health news while I'm posting. My mom got the results back from her PET scan and her cancer's gone. This is obviously very good news.
Right now my bipolar is Kinda Level.
Right now my pain level is 4.
Wednesday, May 13, 2009
On My Anniversary
I'd been meaning to write a post about a rather unpleasant encounter with my County Assistance caseworker regarding my health insurance for a few days now. I'm still going to write that, just not today. There's something else I'd like to discuss today, my wife. As I've mentioned before, she really is the most supportive person I could have ever hoped to find. And today, on our fourth anniversary, I'm going to elaborate on that.
We met when I was still able-bodied, though we didn't start dating until after my injury. She knew about my mental illnesses and my physical disabilities before we got together and didn't care at all. This is an important point because they were an issue for the girl I was dating when I hurt my leg. My girlfriend-at-the-time complained often about my using a cane to walk and my wanting to use a wheelchair for long days out. She frequently made offensive comments about my mental illnesses. I was miserable. When we broke up and I started dating the-girl-I-ended-up-marrying my life took a definite step in the right direction.
My wife, however, is amazing. She makes sure I go to my doctor appointments and take my meds. She pushes me if I'm using my manual wheelchair and yells at me when I say that I feel guilty about it. She's yelled at people on the bus for me and argued with ignorant disablists all over the place on my behalf. I honestly don't know what I'd do without her.
One of the most impressive things is that one of the aspects of my disability that really bothers me doesn't matter to her at all. I can't work. It kills me that I can't. I loved working, I really did. I enjoyed it and was good at it. But now I can't do anything to contribute financially to the household and she has to support us both. I'm still fighting with Social Security so I don't get any money from the government yet. My wife is ok with all this though. She says things like "I always wanted a housewife" and "When we have a kid, you'll be a great stay-at-home dad."
My wife is wonderful. She's the most loving, supportive ally a disabled person could ever hope to find. She's my partner, my advocate, my teammate and my friend. And I love her more than my powerchair.
Right now my bipolar is Slightly Manic.
Right now my pain level is 4 (the vicodin is working well).
We met when I was still able-bodied, though we didn't start dating until after my injury. She knew about my mental illnesses and my physical disabilities before we got together and didn't care at all. This is an important point because they were an issue for the girl I was dating when I hurt my leg. My girlfriend-at-the-time complained often about my using a cane to walk and my wanting to use a wheelchair for long days out. She frequently made offensive comments about my mental illnesses. I was miserable. When we broke up and I started dating the-girl-I-ended-up-marrying my life took a definite step in the right direction.
My wife, however, is amazing. She makes sure I go to my doctor appointments and take my meds. She pushes me if I'm using my manual wheelchair and yells at me when I say that I feel guilty about it. She's yelled at people on the bus for me and argued with ignorant disablists all over the place on my behalf. I honestly don't know what I'd do without her.
One of the most impressive things is that one of the aspects of my disability that really bothers me doesn't matter to her at all. I can't work. It kills me that I can't. I loved working, I really did. I enjoyed it and was good at it. But now I can't do anything to contribute financially to the household and she has to support us both. I'm still fighting with Social Security so I don't get any money from the government yet. My wife is ok with all this though. She says things like "I always wanted a housewife" and "When we have a kid, you'll be a great stay-at-home dad."
My wife is wonderful. She's the most loving, supportive ally a disabled person could ever hope to find. She's my partner, my advocate, my teammate and my friend. And I love her more than my powerchair.
Right now my bipolar is Slightly Manic.
Right now my pain level is 4 (the vicodin is working well).
Friday, May 1, 2009
An Open Letter To People On The Bus (Blogging Against Disablism Day)
Dear people on the bus,
You see the sign that says “Please give up this seat for elderly or disabled passengers”? It's there for a reason. It's there because it's incredibly painful for people like me to stand at all, let alone stand on a bus that's swerving and stopping suddenly. You see me standing there, hanging desperately on to the strap with one hand while my other hand holds my cane to support the weight that my leg refuses to, as well as holding my shopping bags. And yet, you do not give up that seat, I would like to know why.
I understand that I don't fit your idea of what a disabled person looks like, so you might not think I'm really disabled but sometimes people get hurt young. It's true, it happens. To be honest, when I was 20 I might not have thought it either, but at 21 I knew it all too well. While no, it is impossible for you to know my life story and to know why and how I came to be in so much pain, it is clear what my story at the moment is. It's written in the wincing expression on my face, it's told in my grunts and exasperated breathing. How a person can look at another human being and not say to oneself “You know, perhaps he needs this seat more than I do,” I simply cannot grasp.
Perhaps your not getting up is my fault. I admit I don't ask you to. I'm not much of a “squeaky wheel type” and my mother raised me better than to take a seat away from a senior citizen or a woman (chivalry or chauvinism - you decide). Although, she did raise me this way before standing was an endurance challenge. How did your mothers raise you? She had to have taught you to give up your seat to a disabled person. No, that's not fair. It's not her fault or your fault, I'm the one that doesn't ask you to get up. I don't want to be rude. I don't want to impose. I don't want you to think I'm another cripple demanding special treatment. It has to be my fault.
But I don't think so, for I see your faces. You don't think I see them. The way you look absolutely any way but in my direction, the subtle guilt that always confuses me – why if you obviously feel bad about not getting up do you still refuse to do so? I really don't understand this.You clearly know that you're being assholes, and yet you do nothing to remedy the situation. It wouldn't be that difficult to assuage the guilt that is written all over your faces. All you have to do is say “Excuse me, would you like to sit down?” But you don't, you never have. I've been riding the bus for four years and not one has one of you ever asked me that question. And it breaks my heart every time.
The worst times are when I fall. Someone cuts off the bus and the driver stops short or he takes a turn too fast, it happens all the time. And if I'm standing when it happens I fall. And still none of you offer me your seat, usually none of you even offer to help me up. It's then that I lose my faith in humanity. Not even because I'm disabled, but because I'm a person who fell and no one seems to care.
So next time we're on the bus together and it's a bit crowded, if you see you me standing there wincing and wobbling, I would really appreciate it if one of you would let me sit down. It's not going to cause you any discomfort and it's just common courtesy. The upsides for you are you get to go around all day telling people about the "good deed" you did and you won't have to make that shame face.
Crippled Carny
Please take a look at the other, better B.A.D.D. entries here.
Right now my bipolar is Slightly Depressive.
Right now my pain level is 4.
You see the sign that says “Please give up this seat for elderly or disabled passengers”? It's there for a reason. It's there because it's incredibly painful for people like me to stand at all, let alone stand on a bus that's swerving and stopping suddenly. You see me standing there, hanging desperately on to the strap with one hand while my other hand holds my cane to support the weight that my leg refuses to, as well as holding my shopping bags. And yet, you do not give up that seat, I would like to know why.
I understand that I don't fit your idea of what a disabled person looks like, so you might not think I'm really disabled but sometimes people get hurt young. It's true, it happens. To be honest, when I was 20 I might not have thought it either, but at 21 I knew it all too well. While no, it is impossible for you to know my life story and to know why and how I came to be in so much pain, it is clear what my story at the moment is. It's written in the wincing expression on my face, it's told in my grunts and exasperated breathing. How a person can look at another human being and not say to oneself “You know, perhaps he needs this seat more than I do,” I simply cannot grasp.
Perhaps your not getting up is my fault. I admit I don't ask you to. I'm not much of a “squeaky wheel type” and my mother raised me better than to take a seat away from a senior citizen or a woman (chivalry or chauvinism - you decide). Although, she did raise me this way before standing was an endurance challenge. How did your mothers raise you? She had to have taught you to give up your seat to a disabled person. No, that's not fair. It's not her fault or your fault, I'm the one that doesn't ask you to get up. I don't want to be rude. I don't want to impose. I don't want you to think I'm another cripple demanding special treatment. It has to be my fault.
But I don't think so, for I see your faces. You don't think I see them. The way you look absolutely any way but in my direction, the subtle guilt that always confuses me – why if you obviously feel bad about not getting up do you still refuse to do so? I really don't understand this.You clearly know that you're being assholes, and yet you do nothing to remedy the situation. It wouldn't be that difficult to assuage the guilt that is written all over your faces. All you have to do is say “Excuse me, would you like to sit down?” But you don't, you never have. I've been riding the bus for four years and not one has one of you ever asked me that question. And it breaks my heart every time.
The worst times are when I fall. Someone cuts off the bus and the driver stops short or he takes a turn too fast, it happens all the time. And if I'm standing when it happens I fall. And still none of you offer me your seat, usually none of you even offer to help me up. It's then that I lose my faith in humanity. Not even because I'm disabled, but because I'm a person who fell and no one seems to care.
So next time we're on the bus together and it's a bit crowded, if you see you me standing there wincing and wobbling, I would really appreciate it if one of you would let me sit down. It's not going to cause you any discomfort and it's just common courtesy. The upsides for you are you get to go around all day telling people about the "good deed" you did and you won't have to make that shame face.
Crippled Carny
Please take a look at the other, better B.A.D.D. entries here.
Right now my bipolar is Slightly Depressive.
Right now my pain level is 4.
Wednesday, April 29, 2009
An Introduction
I'm starting this blog because I thought it would be a good idea to get my thoughts about my disabilities down instead of just letting them fester. Well, that's not entirely true. My wife suggested it, I think because she thought it would be a good idea for me to get my thoughts about my disabilities down instead of just letting them fester and then unloading them all on her. Awesome and understanding as she is, she really doesn't need all that.
I guess I should probably tell a bit about myself and said disabilities. I am 29 years old and I have walked on a cane since August of 2001. I hurt my left knee at work in what I was told was a repetitive motion injury. Doctors can't seem to come to an agreement on exactly what the hell I did to my knee. Past diagnoses have included torn ACL meniscus, torn cartilage, arthritis and that there's nothing at all wrong and all the pain is psycho-somatic. My current orthopedic surgeon tells me it's patellofemeral pain syndrome and the early stages of complex regional pain syndrome. I have an appointment later this month to discuss surgical options. All I really know for sure is I am in constant pain, I can't put weight on it and I can't stand or walk for anything even vaguely resembling an extended period of time. If I'm going to be out for more than a short trip I have to use a wheelchair.
I recently found out that my liver is all kinds of messed up. I have auto-immune hepatitis (which basically means my body thinks I had a liver transplant and is attacking my liver as a foreign body) and NASH (nonalcoholic steatohepatitis – I don't drink and never have but my liver is acting like I'm an alcoholic, it could result in cirrhosis). I'm a carrier for hemochromatosis (an inability to correctly process iron) and might have Wilson's disease (an inability to correctly process copper).
I might be epileptic. Or I might have some weird kind of migraine that mimics the symptoms of epilepsy but not the brainwave patterns. But the meds are the same so it doesn't really matter I guess. They should also help with the regular migraines I get too so that'll be nice. I get what may-or-may-not be absence seizures when I see flashing lights or flashing color patterns. This means I drift out of consciousness (absence seizures are what used to be called petit mal seizures), I don't get the flopping-around-on-the-floor kind.
I have bipolar disorder and obsessive-compulsive disorder. My bipolar is very rapid cycling, with swings usually lasting a few days, though the changes are sudden and very extreme. My OCD exhibits itself mainly in contamination obsessions and mysophobia (fear of germs), obsessions with symmetry, groups of 3, perfectionism and finding patterns in numbers. I wash my hands a ridiculous number of times in a day and I can't stand to have others touch my food unless I know they've washed their hands immediately before.
In addition to that I also have several congenital heart defects and asthma. Less seriously I also have a hiatal hernia, a torn esophagus, arthritis in my neck, a bad back, shitty peripheral vision and I wear glasses. I also probably have central auditory processing disorder (it's kind of like dyslexia but with hearing) but we don't know for sure because they only found it recently and they can only test for it in kids. In short there's so much wrong with me that when I die I plan to just donate my body to the Mutter Museum.
I'm currently in the process of fighting with Social Security to try to get benefits. I'll keep you all posted on how that goes.
My plans for this blog are to talk my experiences as disabled person, to discuss disability issues, and to not start so many sentences with the word “I.” I chose to finally start this blog now because I wanted to take part in Blogging Against Disablism Day on May 1.
Right now my bipolar is Slightly Depressive.
Right now my pain level is 5.
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