On Friday, I got a letter from Social Security. The date of my hearing is November 6. Three days after my knee surgery. Like I've said in another forum, I honestly can't tell which is the more fun prospect - Having to show up for the hearing in the wheelchair because I just got the surgery, trying to argue that despite the surgery I'm still disabled because my mental illnesses are the reason I'm here anyway, or trying to do all this on heavy painkillers.
Though it turns out this conundrum is more a philosophical debate, as my wife suggested that I push back the hearing because of the surgery, and my lawyer said there is no way I'm going to court that day. Both because of the surgery and so he can work on the case.
So, I've been waiting since (I want to say I got the letter saying I was on the docket in...February? Really, February? Ok) February for my hearing date, and now that I finally have one I'm going to ask to shuffled to the bottom the list again. At this rate I'm never getting Social Security.
Right now my bipolar is Slightly Depressive.
Right now my pain level is 6.
Tuesday, October 20, 2009
Monday, October 12, 2009
Surgery And Fears That No One Will Understand
My knee surgery is three weeks from tomorrow. And Jesus Christ I'm conflicted about it. On one hand , I can't wait. Especially on days like today, when I'm in excruciating pain, when I'm at least a 7.5 on the pain scale even through the vicodin. On the other, I have feelings about the surgery that are very hard to explain, but I'm going to try in this post.
In August of 2001 my life changed. I became physically disabled. I'd been mentally disabled for some years before and to some extant I guess I was physically disabled, too. My heart problems, my asthma, etc - invisible disabilities. My point is, I became seriously and visibly disabled. My ability to walk was, I was told at the time, irreparably impaired. And I've discovered in my time in the Disabled Community that there is a world of difference between those with visible disabilities and those with invisible ones. But more on that later.
In the past eight years I've become fairly active in the Disabled Community. I fight for Disabled rights whenever and wherever I can. In fact, I've become pretty militant about it. I am a Disabled Person. And I'm proud. But I'm getting surgery in three weeks that if all goes well will end my reliance of canes and wheelchairs. Why? So I don't hurt all the time.
I just want to not hurt anymore. Is that so wrong? Why do feel like some sort of Cripple Uncle Tom? It's not fair that I feel this way. I feel like I'm betraying everything I stand for. Well lean for and sit for. There's no reason anyone should have to feel guilty for not wanting to feel pain, and yet I do.
And then there's the identity issue. If I'm not the guy on the cane, who am I? I've been the cripple so long, if I'm not I don't think I'll know who I am anymore. I've tried to explain this fear to friends and family, even my therapist, and no one knows what I mean. They all think I'm being ridiculous. But this really bothers me. Sometimes it keeps me up at night.
And there's the reactions from the Disabled Community. I feel like like I'll be shunned. Yes, I'll still be disabled, I'll still be mentally ill and I'll still have tons of other medical issues, but I won't be visibly disabled anymore. And a great many visibly disabled people look down on invisibly disabled people. They're like the light-skinned of the community. They can "pass." As a friend of mine put it when I was talking to her about my fears regarding the surgery, the invisibly disabled are kind of like bisexuals. They don't fit with either group. Just as bisexuals aren't really gay or straight, the invisibly disabled aren't crippled, but certainly aren't not crippled either. I'm not looking forward to explaining to people that "Yes, I am disabled. I'm mentally ill." Having the visual shorthand of a cane is much easier.
The worst part is the surgery might not even work. There's a 25-33% chance that I'll end up worse than I was when I went in. That I'll have less ability to walk and more pain. I'll be using a wheelchair almost full-time. But these things have already been getting worse. If I don't get the surgery, I'll be using a wheelchair almost full-time in a year anyway. So there;s no reason not to take the chance. I have to try. I need to try. I want to not hurt. Even if it means I might end up hurting more.
But if it works, I hope the other crips forgive me. And I hope I forgive myself.
Right now my bipolar is Kinda Level.
Right now my pain level is at least 7. 5 through vicodin.
In August of 2001 my life changed. I became physically disabled. I'd been mentally disabled for some years before and to some extant I guess I was physically disabled, too. My heart problems, my asthma, etc - invisible disabilities. My point is, I became seriously and visibly disabled. My ability to walk was, I was told at the time, irreparably impaired. And I've discovered in my time in the Disabled Community that there is a world of difference between those with visible disabilities and those with invisible ones. But more on that later.
In the past eight years I've become fairly active in the Disabled Community. I fight for Disabled rights whenever and wherever I can. In fact, I've become pretty militant about it. I am a Disabled Person. And I'm proud. But I'm getting surgery in three weeks that if all goes well will end my reliance of canes and wheelchairs. Why? So I don't hurt all the time.
I just want to not hurt anymore. Is that so wrong? Why do feel like some sort of Cripple Uncle Tom? It's not fair that I feel this way. I feel like I'm betraying everything I stand for. Well lean for and sit for. There's no reason anyone should have to feel guilty for not wanting to feel pain, and yet I do.
And then there's the identity issue. If I'm not the guy on the cane, who am I? I've been the cripple so long, if I'm not I don't think I'll know who I am anymore. I've tried to explain this fear to friends and family, even my therapist, and no one knows what I mean. They all think I'm being ridiculous. But this really bothers me. Sometimes it keeps me up at night.
And there's the reactions from the Disabled Community. I feel like like I'll be shunned. Yes, I'll still be disabled, I'll still be mentally ill and I'll still have tons of other medical issues, but I won't be visibly disabled anymore. And a great many visibly disabled people look down on invisibly disabled people. They're like the light-skinned of the community. They can "pass." As a friend of mine put it when I was talking to her about my fears regarding the surgery, the invisibly disabled are kind of like bisexuals. They don't fit with either group. Just as bisexuals aren't really gay or straight, the invisibly disabled aren't crippled, but certainly aren't not crippled either. I'm not looking forward to explaining to people that "Yes, I am disabled. I'm mentally ill." Having the visual shorthand of a cane is much easier.
The worst part is the surgery might not even work. There's a 25-33% chance that I'll end up worse than I was when I went in. That I'll have less ability to walk and more pain. I'll be using a wheelchair almost full-time. But these things have already been getting worse. If I don't get the surgery, I'll be using a wheelchair almost full-time in a year anyway. So there;s no reason not to take the chance. I have to try. I need to try. I want to not hurt. Even if it means I might end up hurting more.
But if it works, I hope the other crips forgive me. And I hope I forgive myself.
Right now my bipolar is Kinda Level.
Right now my pain level is at least 7. 5 through vicodin.
Friday, September 4, 2009
Two Ends Of The Spectrum
Last month I went on vacation with my wife and her family. We went to Myrtle Beach, in South Carolina, in August. It was upwards of 90 degrees with upwards of 95% humidity every day. My knee was not happy about this. I spent the entire vacation in excrutiating pain despite being heavily medicated. I also spent a whole lot of time using my wheelchair.
Here's the crazy part, Myrtle Beach might be the least disablist place I've ever been. Almost everything was accessible, and the people (both locals and tourists) were ridiculously helpful. They held doors for me and blocked traffic so I could cross the street. Store employees went above and beyond in their efforts to help me. And this happened everywhere we went. It was amazing. Now, granted I didn't use the public transportation down there, but if it's a viable option for getting around then Myrtle Beach might be some sort of cripple Shangri-La.
On the other hand, this happened the other day. At a town hall meeting for the health care reform bill, a woman in a wheelchair was shouted down and heckled by opponents of the bill. When she said she was afraid she might lose her house because of medical bills (not because she took on a mortgage she couldn't afford), a man shouted "Good! Lose your house!" One person (though I use term only technically) whose voice stood out among the crowd, when asked later why he heckled her, said "I don't know how a handicapped woman in a chair has more rights than I do."
You asshole, much like the argument for gay marriage, it's not about more rights, it's about the same rights. And to be perfectly honest, since I already get government-run health insurance, I want everybody to have the same rights I have. And clearly, listening to his tone, his problem with her rights (and by extension, mine, and possibly yours - if you're disabled) isn't that she has more than he does, it's that she doesn't have less.
Semi-related, it amazes me how many people with Medicare are protesting the idea of government-run health insurance. If you're not willing to put your money where your mouth is and voluntarily remove yourself from The System, then shut the fuck up.
Now, on to the updates on my health. The dizziness and headaches I mentioned last time have an explanation. Well, three really. My Ear, Nose and Throat Doctor says it's vertigo. BPPV to be specific, but I'll find out more when I get a balance test on the 16th. My Cardiologist says it's likely vertigo, but it might also be the insane number of meds I take or it could be my blood pressure has gotten too low. So he took me off my heart medicine, which should help with both of his theories. I have to go back in six weeks to follow up and if my blood pressure has gone up too much he's putting me right back on it.
I also had an appointment with my Orthopedic Surgeon today. I'm getting the knee surgery. I'm just waiting for a call back with the date. I have a post about that planned, but I'm going to wait until I have the date.
Oh, and I had a kidney stone last weekend. The pain was unbelievable. Which is impressive, considering how much pain I'm in all the time. For it to stand out as especially painful really is saying something.
Right now my bipolar is Kinda Level.
Right now my pain level is 7.
Here's the crazy part, Myrtle Beach might be the least disablist place I've ever been. Almost everything was accessible, and the people (both locals and tourists) were ridiculously helpful. They held doors for me and blocked traffic so I could cross the street. Store employees went above and beyond in their efforts to help me. And this happened everywhere we went. It was amazing. Now, granted I didn't use the public transportation down there, but if it's a viable option for getting around then Myrtle Beach might be some sort of cripple Shangri-La.
On the other hand, this happened the other day. At a town hall meeting for the health care reform bill, a woman in a wheelchair was shouted down and heckled by opponents of the bill. When she said she was afraid she might lose her house because of medical bills (not because she took on a mortgage she couldn't afford), a man shouted "Good! Lose your house!" One person (though I use term only technically) whose voice stood out among the crowd, when asked later why he heckled her, said "I don't know how a handicapped woman in a chair has more rights than I do."
You asshole, much like the argument for gay marriage, it's not about more rights, it's about the same rights. And to be perfectly honest, since I already get government-run health insurance, I want everybody to have the same rights I have. And clearly, listening to his tone, his problem with her rights (and by extension, mine, and possibly yours - if you're disabled) isn't that she has more than he does, it's that she doesn't have less.
Semi-related, it amazes me how many people with Medicare are protesting the idea of government-run health insurance. If you're not willing to put your money where your mouth is and voluntarily remove yourself from The System, then shut the fuck up.
Now, on to the updates on my health. The dizziness and headaches I mentioned last time have an explanation. Well, three really. My Ear, Nose and Throat Doctor says it's vertigo. BPPV to be specific, but I'll find out more when I get a balance test on the 16th. My Cardiologist says it's likely vertigo, but it might also be the insane number of meds I take or it could be my blood pressure has gotten too low. So he took me off my heart medicine, which should help with both of his theories. I have to go back in six weeks to follow up and if my blood pressure has gone up too much he's putting me right back on it.
I also had an appointment with my Orthopedic Surgeon today. I'm getting the knee surgery. I'm just waiting for a call back with the date. I have a post about that planned, but I'm going to wait until I have the date.
Oh, and I had a kidney stone last weekend. The pain was unbelievable. Which is impressive, considering how much pain I'm in all the time. For it to stand out as especially painful really is saying something.
Right now my bipolar is Kinda Level.
Right now my pain level is 7.
Sunday, July 26, 2009
Ugh.
Sorry it's been so long since my last post, I really didn't intend for this to be a monthly blog. I really do need to update this more often, especially as I have had things to talk about but just haven't.
I'll start off this update with The Big Issue right now, certain aspects of my health situation have been getting a bit worse lately.
My knee pain has gotten worse, and it's been going out on me completely more often. I find myself having to take my vicodin more frequently. Whereas before I was taking it once a day or maybe every other day, lately I've been taking it at least once a day, often more. And this is after my doctor upped the dosage a few months ago. I've been having a harder time walking and standing, and getting up from chairs for that matter, since my knee seems even less inclined to support my weight than usual.
Also, there seems to be something wrong with my head. Well, something else wrong with it. I've been getting awful headaches and dizzy spells. Really terrible ones. I feel like I'm falling over, usually to the right, and I can't help but try to hold myself up. This happens when I'm standing, sitting or lying down. It's led to me falling into walls and things, though thankfully I haven't hit the ground yet. Even though I just saw her, I have an appointment to see my neurologist again in a few weeks, as my primary doctor was stumped by the problem.
On a probably-related note, I've been sleeping much more than usual. I've been, both, taking more naps and waking up later. Generally, no matter what time I fall asleep, I wake up at about 8:00. On my own, no alarm, everyday. Recently, though, this has not been the case. If I want to get up before like 11 I have to set an alarm. Hell, the other day I slept til 2. This never happens. Something is very wrong.
Both my psychiatrist and my neurologist have upped meds for me recently. My psychiatrist increased my neurontin, and my neurologist increased my topamax. This did not surprise me, as both of these doctors raise these meds every time I see them.
My neurologist also wants me to get an EMG test. She wants to figure out why my hands go numb so often and why I get tremors. I've heard nothing good about the test, only that it's very unpleasant. Oh, and it's the day after I get back from vacation, so yay.
I have no news on my Social Security case or my knee surgery. The knee surgery because we don't know when to schedule it yet, the Social Security case because, well, it's Social Security and there's no knowing when they'll contact you.
Right now my bipolar is Kinda Level.
Right now my pain level is 6 (And I can already feel it getting worse).
I'll start off this update with The Big Issue right now, certain aspects of my health situation have been getting a bit worse lately.
My knee pain has gotten worse, and it's been going out on me completely more often. I find myself having to take my vicodin more frequently. Whereas before I was taking it once a day or maybe every other day, lately I've been taking it at least once a day, often more. And this is after my doctor upped the dosage a few months ago. I've been having a harder time walking and standing, and getting up from chairs for that matter, since my knee seems even less inclined to support my weight than usual.
Also, there seems to be something wrong with my head. Well, something else wrong with it. I've been getting awful headaches and dizzy spells. Really terrible ones. I feel like I'm falling over, usually to the right, and I can't help but try to hold myself up. This happens when I'm standing, sitting or lying down. It's led to me falling into walls and things, though thankfully I haven't hit the ground yet. Even though I just saw her, I have an appointment to see my neurologist again in a few weeks, as my primary doctor was stumped by the problem.
On a probably-related note, I've been sleeping much more than usual. I've been, both, taking more naps and waking up later. Generally, no matter what time I fall asleep, I wake up at about 8:00. On my own, no alarm, everyday. Recently, though, this has not been the case. If I want to get up before like 11 I have to set an alarm. Hell, the other day I slept til 2. This never happens. Something is very wrong.
Both my psychiatrist and my neurologist have upped meds for me recently. My psychiatrist increased my neurontin, and my neurologist increased my topamax. This did not surprise me, as both of these doctors raise these meds every time I see them.
My neurologist also wants me to get an EMG test. She wants to figure out why my hands go numb so often and why I get tremors. I've heard nothing good about the test, only that it's very unpleasant. Oh, and it's the day after I get back from vacation, so yay.
I have no news on my Social Security case or my knee surgery. The knee surgery because we don't know when to schedule it yet, the Social Security case because, well, it's Social Security and there's no knowing when they'll contact you.
Right now my bipolar is Kinda Level.
Right now my pain level is 6 (And I can already feel it getting worse).
Monday, June 15, 2009
A Much Overdue Update
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.
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.
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).
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