Who says stuff like that?

I had a bit of a setback these past couple of weeks. Both physically and emotionally. I’ve been trying to stay upbeat, but am still a bit down.

The hip pain that I’ve mentioned seems to only get worse and worse. The option of another replacement has even been tentatively put on the table. It’s something I really would like to avoid. My knee replacements went very well, but I know hip replacements are even more complicated and painful. On top of the R.A., I also have bursitis on my right hip which is making it worse. My rheumatologist gave me a steroid shot, but I think she missed, because it didn’t do any good.

On a brighter note, my knees almost never hurt anymore. Especially the left. Unfortunately, I still haven’t been able to get the right knee completely straightened. It took over a month of intense therapy to get it from 18 degrees from straight to 4 degrees. I had a week and a half break while switching from home health to outpatient therapy. In that one and a half weeks, my knee went back to the eighteen degrees. As you can imagine, my frustration levels are through the roof. As I’m sure anyone who has ever been through this type of surgery knows, the physical therapy has been a very difficult and painful process, and I’ve worked very hard. And all that work went down the drain. Even though I kept up with the exercises I could do. But…. I’m back in outpatient therapy. At the end of the month, it will be a year of almost constant physical therapy and at this moment in times, my knee is still bent. 

So, if anyone has been reading my posts, you’ll know how much I’ve been looking forward to shopping for clothes to show off my new knees. In fact, I’ve thought of it as a sort of gift to myself for making it through these past few months of surgery and recovery. I haven’t wanted to buy clothes until I lost some of the Prednisone weight, but decided to buy a few things to try and cheer me up from the setback from my knee.

I swear this story is true. I couldn’t make this stuff up. After you read this, you might understand why I hate leaving my apartment. Oh, if it was only a one time thing……..Alas, it is not.

So…..I take my wheelchair because of the ever increasing hip pain and because I’m still not at the point where I can stand for a long time. Nowhere near enough time to shop anyway. I felt really good. I had gotten my hair colored and cut a few days before. I had whitened my teeth, and gotten new make up. I felt like I looked better than I had in a long time. And for the first time in an extremely long time, I put some effort into my looks. So I found a few things to buy and went to pay.

The cashier asked for my I.D. because I payed with my debit card. She looks at the I.D. (which was taken pre-prednisone) and she sort of laughed and looked at me like I was trying to play a trick on her.

She said ” This isn’t really you.” giggle giggle.

I knew where this was going, because it’s happened to me several times. So I reply curtly “Yes, its me.”

“Well you’ve certainly put on some weight haven’t you?” I felt like someone punched me in the gut. There were several people behind me in line and my cousin was with me and there were several other cashiers and customers in the immediate area who could hear it all.

I was horrified, and just replied with a sarcastic “Thank you so much for that…..”

This is were it gets bad. You could tell she wasn’t  being hateful. She was just genuinely dumb.

She looked a little shamed, and as if to make it better she looked at me in my WHEELchair and says, “Oh, dont worry hon, you can run that off in no time”

I just looked at her in genuine amazed shock and noticed the other cashiers’ eyes bug out as they quickly averted their gaze. My cousin was really angry and says “She obviously cant.”

So the woman once again realized her foot was in her mouth, and so once again tried to make me feel better by saying ” You know it’s ok you’re in a wheelchair. Sometimes I really wish I was so I wouldn’t have to walk so much.”

I had a million retorts running through my mind, but was just so angry and mortified, I just hightailed it out of there. I tried to laugh it off, because honestly it’s a bit funny looking back. WHO SAYS STUFF LIKE THAT?!

I tried to put it out of my head, but it really upset me. For years, I’ve dealt with this sort of thing. Strangers looking at my legs like I was some sort of circus act. Gasping, and asking what was wrong with me.

In another post about a year ago I wrote about a woman who kept looking at me and then at my I.D. back and forth, and then asked me pityingly, “What happened to you?”

I had thought that once my more obvious signs of R.A. were gone, people would bother me so much. But apparently my weight horrifies them now. People, from strangers to my own grandfather, wont leave me alone about my weight.

It’s like they think I don’t know. That they need to bring it to my attention so I’ll do something about it. Trust me I know. I can’t even stand to look in the mirror. I’m nearly one hundred pound heavier than I was less than two years ago. Im horrified by it. I haven’t been able to lose a single pound no matter what I’ve done. But the only thing keeping me from being completely bed ridden was the Prednisone and I would do it all over again. I would take every pound. I don’t know anyone who can understand the concept of that kind of pain. How can you even begin to explain this sort of thing to a dumb cashier? So I just give up.

All of my friends tried to reassure me, but when I go in public, there is usually a high chance of all my insecurities being pointed out to me.

It’s just so hard to live with this disease and have no one understand it.

My best friend’s sister ( who, like the cashier wasn’t being hateful, just extremely ignorant) was once talking to me about R.A. drug commericals. She was trying to make small talk so she brings them up and starts laughing and said “Aren’t they ridiculous?! I just want to say, God, just take a freakin aspirin and get over it.” Giggle giggle.  She said that to me. Knowing my full story and  struggles. She wants to say that to them. So in other words, she wants to say to me. It’s just ignorance. And usually, I can let these things slide. But this cashier the other day, just wrecked me.

I cried for hours. I’m crying now just thinking about it. Everyone says not to let some dumb cashier get me so down, but I cant help it. My friends were so mad. They wanted to know the store and her name so they could get her fired. I declined the offer. It certainly wouldn’t make me feel any better. They were mad because almost every time I get the confidence up to start going places, something like this happens, and like some sort of turtle, I just pop back into my shell. It’s frustrating to them I’m sure. And rationally, I am perfectly aware of how dumb it is to miss out on things because of my own pride. But I just can’t help it.

Pre-Registry

I pre registered for my total knee replacement surgery yesterday. Just six more days! They drew some blood, took some xrays and sent me on my way.

There seemed to be alot of  mis communication between the doctor’s office and the hospital though. But in all fairness, my doctor wasn’t in town yesterday and I knew that. So they were mostly communicating through secretaries.

But the hospital didn’t have a copy of the E.K.G. I had done a couple of weeks ago. They also had the right leg down for the first replacement. That was also my fault. It’s up to me and I hadn’t given them a definite answer. But I’m sure now. They need to cut this left knee out soon! Lol. I’m hating it more and more. Everyday I have to go without medication is beginning to take it’s toll. I’ve been almost completely wheelchair bound for the last couple days.

Good thing I have a handicap accessible apartment! It’s going to be such a help after the surgery. It’s already fitted with bars and everything you can imagine. I could live from this wheelchair at this point.

The only thing I’m beginning to worry about is the fact that I have a platform bed so it sits much lower that normal beds. It’s been hard to get out of lately.  I need to figure something out in the next couple days.

I’m still not nervous in the slightest.

Vacation

I’m going on my first trip since I became sick.

I’m all sorts of nervous. I wrote an email to another blogger who responded with this post.

http://typeawithra.wordpress.com/2008/09/16/traveling-with-ra-part2/

I’m traveling from Texas to Oregon with my father and new step mom. They are going for a church conference, and thought I could use a break. So they are letting me and my sis tag along. They upgraded to a two bedroom cabin.

I’m not sure what all I will be able to do. I’m taking my wheelchair, so I’ll be able to do much more. But there is a layover in Colorado and I’m nervous about it.

There are alot of things I would like to do. So we’ll see how handicap accessible they are!

-The most exciting part of the trip is that I get so see the Redwood forest.

-And we are taking a trip out to the Roloff farm from Big People Little World. I shall buy a pumpkin. And most likely do nothing with it. 🙂

-I saw a special on the travel channel about the top ten wonders of the west. The Columbia River Gorge is on the list. Its only as couple hours from where we will be.

I really hope I can do everything.

What I’m most worried about is the fact that there wont be anyone there who can give me my shots. I’ll be gone eleven days, so I can’t go that long without it.

I have such an irrational but completely real phobia of needles. If it came down to me giving it to myself or not going, I would still be too scared to do it. I would opt out.

I leave at an ungodly hour on Sunday morning.

Please wish me luck. I don’t want to miss out on anything. I’m very happy to be going.

Why no one sees me anymore

I hate hate hate hate going in public.

I can not wait until the day I can go out in public without people staring at me. I was always a relatively confident person. Not anymore. I don’t understand why people are so rude.

I would never stare at people the way people stare at me.

I would never go up to a complete stranger and ask them “Hey, whats wrong with your knees?”

GGGGRRRRR! I just want to scream. I am already unbelievable self conscious about myself right now. I don’t need confirmation that I have turned into such a freak, that people can not help but ask me what the hell happened.

And it would be one thing if it was just once. But it has happened so many more times than I can count.

I am sure anyone who has had a physical handicap can understand.

And who knows, maybe some people get some sort of comfort out of talking about it with complete strangers. But I do not. I get embarrassed. And annoyed. The more it happens, the harder it is for me to even be civil. And maybe that says something about me. Maybe that is something I need to work on. But what it does to me at the moment, is confirm all my fears about my body image.

I has happened so often, that it is has become a running joke with my friends and family. I’ll walk into a public place….Target, the movies, the doctors office, etc. Someone will spot me. And I can recognize the look on someones face when they want to come up to me. ” Oh no. Ive been spotted” I will immediately look away, put my head down, and try to shuffle in the opposite direction. But alas, they always catch me. And they never get the hint. And some version of the phrase “Whats wrong with you?” always comes out of their mouths.

Don’t people realize how cruel they are? Whats wrong with me? Whats wrong with me is you. You are what is wrong with me. When I am away from people like you, I can function A lot better. But of course, I don’t say anything like that. I try to blow it off. Something along the lines of, “oh, you know. I have arthritis, blah blah blah.”

The majority of the time though, this isn’t enough for them. The majority of the time I get a detailed run down of every medical condition they have ever had. It’s like they are trying to compete.

” Oh, arthritis eh? Well Yea, I got me all sorts of arthritis. Know what else I got wrong with me?….etc.”

Complete strangers try to confide to me their most personal and intimate medical problems. I kid you not. I don’t know anyone else who has any physical limitations, so I don’t know if this is a common thing. People who haven’t been with me when I’m in public don’t believe me. They absolutely can not wrap their mind around the fact that people would act like that. I was telling my best friends mom about it. She just kept saying no way! No way! We stopped at an antique store a few days latter. I walked into the store in front of her. The first lady we came across stared me down. Just up and down, like I was some sort of side show attraction, I hobbled into the next room, and the first person I saw asked “What happened to you?”

We didn’t stay long. I made my point. So the result of all this is that I always have my head down, and am always trying to make a conscious effort to keep a scowl off my face.

And this is why I hate public places, and avoid them at all cost. It not just my physical limitations at the moment. It the mental ones. Plus, I pretty much always need a wheelchair if I have any amount of walking to do now days, and that doesn’t stop them either.

Now add an additional seventy pounds into the equation and maybe you will understand why I avoid everyone. I live in a pretty small town. You can not go to the grocery store without recognizing a few people.