Rheumatoid Arthritis and Jail-Discrimination in Action

I believe I was detained in unnecessarily cruel conditions as a result of being discriminated against because of my physical disabilities.

Thursday, I turned myself in because I had two old minor traffic violation tickets. I decided to take care of it and scheduled an appointment to turn myself in because I could not afford to pay for them. I talked to an officer about what I needed to do and what I could bring. I explained that I was disabled and lived on a very small income, therefor I would have to sit the tickets out. I explained to him my concerns about my physical limitations and whether or not I would be able to handle it. I was assured that it would not be bad and that. He failed to tell me about quite a few things.

I was not informed ahead of time that I would not be allowed any medication. I missed three doses. On top of that, some of the medication they confiscated was supposed to be refrigerated. My sister had the foresight to call and check. It had been left out for nine hours. Ruined.

When we arrived at the jail they placed me in the Female Detox holding cell because it was the only one empty. I had to be in a cell alone because I need a cane to walk and they said it could be considered a weapon. Since the bench was just a few inches off the floor, I could not get on it. So they brought me a hard plastic chair.

The nature of my disability is severe rheumatoid arthritis. The worst joints affected are the hips and knees. I also have flexion contractures on my knees so my knees are permanently bent and it makes walking and standing extremely difficult. And it makes kneeling or crawling physically impossible.

They placed me in the cell and left me. I was placed in at about 3:30 p.m.

After about an hour of sitting in one place I started having severe pain in my hips. I tried adjusting my positions. I did not want to be a nuisance so I held off my complaints until about 7:30. I had noticed that all of the woman who came in about the same time as me had already been processed and taken to a cell hours before.

I pushed the buzzer and an officer came to the door and asked me what my problem was. I told him I couldn’t sit in a hard chair for this long, especially since I was not able to have my medication, which included pain pills and steroids to help the inflammation. The officer told me it was too bad that I had it better than the other inmates because I had a real chair. I asked him when I was going to be taken to a cell where I could recline and stretch my hips, and he told me that they didn’t have any room for me because I had to be placed alone. I asked if I could see the paramedic then so she could explian to them the nature of my pain. He shrugged his shoulders and walked off. Half an hour later I buzzed again, and he came up to the window and yelled at me for pushing it. I asked him if I could just call my family so they could come get me. I told him I hadn’t realized how much pain I would have to be in.

I never asked for special treatment. I want that understood. I only wanted to be processed like all of the other inmates. But since I was handicapped they did not take me out of the detaining cell. I had to sit in the chair for a total of eighteen hours in severe pain. I tried holding myself up off my hips using my arms. At one point I let myself fall to the concrete floor so I could at least stretch my joints. A couple hours later I pushed the call button because I couldn’t get up off the floor. The woman who answered the box sighed angrily and cussed at me. They helped me back in the chair and told me not to get in the floor anymore. I told them I had been sitting in the chair for fifteen hours and was in alot of pain.

Throughout the afternoon, night and morning I asked for a doctor four times and was denied. I was denied all medication(including the non-narcotics). I asked to see the judge in the morning and they would not allow me to do that either. My sister was able to post bail and I was allowed to get out of the chair at 9:30 the next morning.

I was never processed like every other female to come through the jail. I know it was because I was disabled. If I wasn’t I would have been processed like everyone else and allowed to sit without pain. No matter how I tried to explain to the two officers about how much I was suffering, all I was met with was sneers and disdainful comments.

I just think that it was an excessive punishment for an expired car tag. I think it was excessive to place a person with a disease that attacks joints in a hard chair for eighteen hours with no medication. I was also told that if no one came to bail me out I would have had to stay in that same cell, in the same chair, until Saturday morning.

I forfeited the eighteen hours I spent in jail because I cant even imagine how bad I would feel then. I’m already in so much pain right now that I cant even sit.

If they didn’t have room for me, they should have released me. I turned myself in.

So to sum up:

-I was denied the right to see the judge when he came in.

-I was denied the right to see a paramedic

-I was not told my medication would be confiscated

Because I was disabled, I was not allowed to be processed like everyone else. Because I was disabled I had to stay in extremely painful conditions, while I watched person after person be processed.

Apparently, this is how people with disabilities are treated. Not as equals, but as inconveniences, that are too bothersome to be dealt with.

I have filed a complaint with the Texas Commission of Jail Standards,

The Federal Department of Justice,

and my congressman,

I know nothing will come of it though. These things never do.

 

 

Getting out and getting over it

I found this wonderful blog from a woman who left a recent comment. I wanted to make a special post because one of her posts touched me so much.

http://thelifeandadventuresofcatepoo.blogspot.com/

She has a weekly post called “The Simple Things” where she writes about all of the small yet wonderful things in her life. It just really hit me hard. Because that is me. It’s always been me. I have always been the type of person who appreciates the small things in life. I used to get drive around for hours trying to get lost so I could see new places. Every time I had some free time I would hop in my car and take pictures. And I haven’t been able to do that for a very long time.

And I think that because I haven’t been able to do things like I used to, I haven’t put as much effort into trying.  But I hopped into my car yesterday evening. And just drove around some of the back roads near my apartment. I didn’t get any spectacular shots. And I had to take them all while sitting in my car, but it was really nice. I had forgotten how nice it was.

I have to try not to be such a perfectionist. I couldn’t take the pictures I wanted, but I had a wonderful time anyway. It put me into a much better mood.

So thank you Cathy,

and here’s a picture for you.

 

Breakdown at the doctor’s office

So, I’ve never actually cried in front of a doctor before now. In fact, a problem of mine is that I always try to downplay my pain to people around me. ( There are only a few people close enough to me that I can actually be honest with)

After the worst night of my life last year ( You can read about it here) https://raandme.wordpress.com/2008/06/27/rheumatoid-arthritis-and-stress/ , I called my doctor. She asked me how I was doing and I said something along the lines of  “Oh, I’m ok. I’m just having a bit of a bad time” I have no idea why I do that. The woman I was staying with told me to cut it out and to at least me honest with my doctor for goodness sake. How can I expect to get the right treatment if I don’t even tell her how much pain I’m in. I had to admit she made sense.

So I had a doctors appointment last week and I had to see a new doctor. I’m so upset by the visit, that I haven’t been able to make myself write about it. I just start crying again. The poor woman. I still feel like a complete idiot. But after she told me there wasn’t anything she could do about the weight right now, I asked her what the plan is with my knees.

I recently went through six weeks of physical therapy. I havnt updated with pictures from week 4-6 because of the coma my computer was in. And unfortunately it is suffering from complete organ failure. Not to mention amnesia. So I cant upload at the moment.

ANYways, there wasn’t much of an improvement after week three anyway. I feel better. I’m able to walk farther and longer. I actually made it a block and a half last night after a play! I barely made it, and I’m feeling the pain today, but my god! What a difference. It would never have been possible before therapy. So while there were improvements, they are still permanently bent. I still look like I’m preparing to jump. People are still staring at me, and I still hate it.

My physical therapist said my knees will probably never straighten fully again. And that they wouldn’t even get much straighter. Apparently it’s not exactly reversible. The reason it got so bad was that apparently, unconsciously I was protecting my knee by keeping it bent a bit. Because it hurt to bad otherwise.

I had a ton of Xrays taken two months ago and I’ve been waiting for the results. She pulled of the radiologist report for the eighteen Xrays, and it was exactly two sentences and said that there was evidence of R.A.

I said ” Thats all it said? Eighteen Xrays, and they tell me I have R.A. I already knew that. What was the point? ”

The other sentence said something about the bones in my knees. Fortunately the bones were not too damaged. Its everything surrounding it that’s damaged. Ligaments, etc. So since the actual bones are not that bad, I don’t qualify for knee replacements. So basically what it comes down to is that I have to keep looking like this! For god knows how long!

Now I’m upset again. The only way I made it through the wait to get on Medicare is by hoping that once I got on it and had proper medical treatment, I could get better. Not healed of course, but better.

I guess I’ve been painfully naive. I guess it was silly to think that. It comes down to the fact that its just too late. They have been like this too long now to do anything about it.  I don’t want to complain and sound like I’m pitying myself. But I do want to be honest. It’s the whole point of this blog. And I dont mean to wax melodramatic. I keep trying to put it out of my head.

It just that now I don’t have anything to look forward to. No next step to make it to. And now I don’t know what to do.

Rheumatoid arthritis and Dieting VI

I haven’t updated my blog about my weight loss for one reason only. I cant loose any. When I dropped my steroid dose to almost nothing I lost 11 pounds immediately. They fell off. Since then I have not lost a single pound. Not a single stickin pound. I weigh myself every morning. And every morning it says the same damn thing. I haven’t actually gained anymore but that’s hardly enough to console me right now. And even though the puffiness in my face and double chin( its a family thing!) is almost gone, my stretch marks still continue to increase.

My new doctor lifted up my arm and pointed at my stretchmarks and said it was just because of the prednisone. I asked her if there was anything I could do about the weight. I’ve been dieting for months. I’ve been eating an ungodly amount of fruits and vegetables. Practically drowning myself in water. I’ve been swimming several times a week. I had six weeks of physical therapy, and not a single pound is gone!

She said there’s really not much to be done. She said it can take up to nine months after you are completely off the steroids to start loosing weight. Every time I feel like I get close to a goal, another longer one comes along.

I think I want to go back to the awful doctor I went to when I first got sick.  At least I could get some diet pills. Bleh. But I know, I know. There is no easy fix. Im just extremely extremely disappointed. It was a bad visit altogether.

I had a visit with my endochronologist about my thyroid. It went from being a bit undersized to a bit oversized. But he still dosnt think its bad enough to be on medication for. He dosnt think it’s affecting my weight. So I dont know what the problem is. Surely it shouldnt take this long to loose weight. I dont know what else to do.

Computer woes

My computer is falling apart.

Out of 6 USB ports, only one works, and I have to use it to plug in a mouse, because the port were I usually plug in my mouse isn’t working either. I tried to charge my MP3 player, and it froze. It has now been frozen for two days( the MP3. Not my computer) On top of all that, the computer wont read any Cds.

The last person to work on it said it was only a matter of time before it crashes completely. A problem with the motherboard apparently? He said if he was me, he would buy a new one. I was a bit suspicious and asked him if he happened to sell computer. He doesn’t though.

And there’s definitely no money for a new one. Especially since I had to spend so much to get this one going again. Which I wouldn’t have done if one of the three people who worked on it had said there was no point.

I have a feeling there may be a long hiatus soon.

R.A. Nightmares

I fell asleep today and had some very odd dreams. Ever since I got sick, I have had the same dream. It usually varies in someways, but it always comes down to the same thing.

Im always doing something mundane. Walking my dog. Running, Gardening, walking across campus, shopping with my friends.

At some point during the dreams I always realized that something is terribly wrong. Then in my dream I hear my own voice saying ” Wait, I can’t actually do that.” In one dream, after I realized this, I started walking slower and slower. My feet started hardening, and my body started turning to stone. First my feet, and it started to slowly make its way up my legs, until it was over my knees, and up to my hips. And I would feel this horrible anxiety wash over me. Then, I started apologizing. I was pleading to everyone around me to stop it, that I was sorry. I was just trying to do what everyone else was.

Another time, when I realized something was wrong, I started sinking into the ground. Its always slow enough for me to actually think I can get out at first. Then the panic I fell is very real.

When I dreamt about walking my dog, she jerked the leash out of my hand, and I started chasing after her. Then I hear my own voice screaming at me. ” Wait! You don’t have your cane! You can’t get her without it!” And the cane is just hovering over my head. And all of a sudden my dream self can feel pain, and I’m mad because I wasn’t feeling it until I remembered that I should be. I try to jump up to get the cane. But since I’m aware of my limitations I can’t. And my dog is on the other side of the park, just waiting for me. But my voice tells dream me that “It’s no good. Even if you had the cane, you still couldn’t get to her”

It dosn’t exactly take take Freud to analyze these. Pretty obvious. But what’s odd, is that even while I’m awake, sometimes, I am genuinely surprised to find myself in pain.

When I woke up from my nap, I had actually forgotten for a few moments. I tried to jump up out of bed like I always used to do, just to fall back down, as I yelled out in pain. For a split second I was actually shocked. What was wrong? Before it all came back. How could I actually forget? After over three years of this? It doesn’t happen often. Its a very surreal feeling. Almost like I was back in Spring 2005. Like none of it ever happened. Like maybe, I dreamed the past 3 years up.

Medical Update

I’ve had three issues in the past couple of weeks.

One being frustration with my pharmacies. Another being frustration with my body, and the last is complete sadness about my doctor.

I’ll start with my pharmacies. I had too order my Enbrel through a pharmacy for the first time. I never expected it to be so complicated. I had to wait until my blood work came back to see if she wanted me to continue on it. She decided to keep me on it for the moment. My doctor sent it to my usual pharmacy. I called to confirm that they received it and to see when it would be and how much. They said they didn’t have it and would have to order it. Since it was a Friday, and Monday was a holiday, they said they couldn’t order it until Tuesday, and expected it by Thursday. Which would make it roughly over two weeks since my last shot.

I called every other pharmacy within thirty miles and no one had it in stock. Surely its not that uncommon?  I decided to stick with my usual pharmacy because I had never had any problems with them.

So the next Thursday I called them to check on the order and they said it wouldn’t be ready until the next day. I called back then and they had the nerve to tell me that they couldn’t carry Enbrel because they were not a specialty pharmacy. So they apologized and said they would fax it to the specialty pharmacy in town.

I had called them before and new they didn’t have any in stock. And since it was a Friday, they couldn’t put the order in until Monday, yadda yadda. So I called them Wednesday, and they said they never received a fax. Then my regular pharmacy said they never had the prescription on file! So I start talking to managers and I’m not happy because it’s been three and a half weeks since my last shot. Lo and behold, a miracle. The previously lost prescription appeared out of thin air. It was re-faxed, and of course, I had to wait for them to order it.

Well Friday came along again, and I went to pick it up. I gave them my insurance card and they said ” okay, that will be $1,793. I swear to god, I started laughing uncontrollably.

I called my insurance and they said they didn’t have my records updated with my income( which is insane, since I wouldn’t qualify for the insurance unless they had my income!) They had to update my file, which takes roughly one week.

I couldn’t make this up. I had been in touch with my doctor about it, and they didn’t have any samples, but pulled some strings, and eventually got ahold of two shots. So it put me at one whole month without my Enbrel. That’s not even the bad part. Onto my second complaint.

The blood work my doctor ordered in the first place came back with a problem with my liver functions. Which has never happened. So she cut my Methotrexate in half, cut my pain pills completely. Said to go back up on prednisone( I had finally gotten down to one milligram a day! GRR!) She wanted to keep me on Enbrel for the moment because she didn’t want to change anything while shes trying to figure out what caused the liver problems. So then I went a month without Enbrel too! Bleh.

The worst part is that I went in for new blood work yesterday and they told me my doctor was no longer with the clinic! I was devastated. That will be the third change in doctors in a year. My first doctor decided to leave, and trained a P.A. and that is who I’ve been seeing and she has been amazing.

Since there have been some changes in the clinic, there are three new doctors, and they decided they that they didn’t want the responsibility of a P.A. and they fired her. With no warning!

Now I’m going to have a new doctor that I’ll see next week. And its partly her fault. Bleh. It was just so nice to have a doctor who I knew actually cared and would go beyond her duties. I have no idea what this new lady is like. If I don’t like her, then I’m going to somewhere else.

My sister works at a hospital and several doctors have told her to tell me to go to one that’s about 65 miles from where I live. The one I go to now is about thirty, and is the only one closer. So I think I’ll go for it.