Dreams Deferred

Im going to have to drop my drawing class. Im so crushed. I feel like a part of me just died.

I just keep picturing myself when I was eight years old and drawing Disney characters. I wanted to be an animator when I grew up. And my parents used to tell me I could do anything I set my mind to. As long as I worked hard enough at it…….

I’ve been waiting four years to get back to classes.

But swollen joints, elbow contractures, and shaky hand are not conducive to achieving this particular dream of mine.

I was just so angry at the world today. I usually have a good outlook on life and my illness. But today I’m angry. Today I’m crushed. Today I am so very very tired of dealing with this illness. I cried a lot today.

I feel like I’ve been robbed.

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A Dream Deffered:
Langston Hughes

What happens to a dream deferred?

Does it dry up
like a raisin in the sun?
Or fester like a sore–
And then run?
Does it stink like rotten meat?
Or crust and sugar over–
like a syrupy sweet?

Maybe it just sags
like a heavy load.

Or does it explode?

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.

I’ll just try again

Ok. Now that I’ve managed to drag myself out of bed and stop the crying I’ve a bit of progress today.

Im going for a second opinion. I made an appointment with the doctor who did one of my close friends replacements. She was only nineteen at the time.

I understand the reasoning behind waiting, but at this point its just a matter of quality of life. The surgeon said my knees were bad enough to warrant surgery. Its just a matter of me being too young.

To be honest, I cant make myself care about what will happen in the future. All I know it that I can not keep going the way I am now. I cant. Eight months of physical therapy hasn’t worked. My therapist said if I was older he would tell me to give up. Which is ironic since the surgeon said if I was older he wouldn’t give up.

I’m twenty four. I want to finish school. I want to have a career. I want to date and socialize. These are the years I need to be pain free. Not when I’m sixty. I cant sit around in this apartment rotting away until I get old enough to have surgery.

I just have to be more aggressive with the next doctor. I sort of just sat there in shock on the last one. I made some attempts to make him listen but he wasn’t having it. I’m just going to have to make the next one see.

They said no

They said no.

They said no!

They said I’m too young. I always get that excuse.

They said they want to delay it as long as possible because replacements don’t last long and I’m only twenty four.

They said they want to wait a few more years! They said if I was older they would schedule me immediately.

They said that my knees are bone on bone and that it has locked them into place. Therapy wont get them any straighter.

And they still want to wait years.

They want me to sit in this apartment for YEARS! Rotting away. Wasting my life. Waiting to get OLDER so they can replace my knees then.

This was my last shot.

WHAT THE HELL AM I SUPPOSE TO DO NOW!!!!!!!!!!

I give up. I give up. I don’t know what else there is.

I thought for sure it would happen. I feel like I’ve been kicked in my stomach.  I feel devastated. I am beyond devastated. There is no word for what I am right now.

Reflections

I began having symptoms in the spring of 2005, and since then I have not gone a single day without pain. It’s become such a normal experience for me. It’s become a part of me.

When I first started feeling pain I thought it was the worst pain I would ever feel. I couldn’t imagine ever hurting any more.

After several more months and no improvement and only steady decline, I wished more than anything that I would only hurt as much as in the beginning.

Whenever I thought it couldn’t possible yet worse, it always did. No matter what I did or what I tried or who prayed for me or anything. It always got worse. This has been going on for a very long time.

It’s astounding what one person can get used to.

I am finally beginning to feel like I’ve stopped sliding down a slippery slope. I feel like I am finally beginning to climb my way back up. And I know this will be a much harder and longer process than falling down it.

I remember many times when I would be in so much pain and would get so upset I’d yell, “I give up! I give up! I can’t do this anymore”

It would make me laugh afterwards. Because of course I cant just “give up” R.A.

My neck used to swell up and get stuck in one position. If you pull your chin in and try to give yourself a double chin you’ll understand what I mean. It would get stuck like that for hours on end. Sometimes all day. It was almost impossible to swallow, and I almost chocked a few times. The absurdity of the situation was never lost on me.

I’ve laughed out loud many a time over my situation. It’s always better than crying. I am a very upbeat person usually. But sometimes I felt like I didn’t have a choice.

Being anything other than upbeat makes people unconfortable. NObody likes to hear someone complain(even if they are in alot of pain)

I remember that after my mother died when I was fourteen I was crying, and my father told us four kids that crying didn’t help anything. That anytime I felt like crying, I should just get mad instead. Well, even at fourteen I knew that was bad advice, but I did agree that crying never helped anything. It only made me feel weak.

Another lesson taught us soon after was the “life goes on- turn the page” lesson. My father was not himself after mom’s death. He became a completely different person. He could not stand being alone. He remarried very quickly to a very bad woman. Yes, my life was the overly cliched Cinderella-evil-step-mother story. Except without the prince charming and fancy shoes.

When she started getting rid of all of our mother’s things, we of course were very upset. My dad said it was time to move on. To turn the page. I was very bitter about that. I knew it was a very bad thing to say to a child within a few months of her mother’s death, BUT it still stuck with me.

So I’ve never been one to dwell too long on my set backs. I push them to the back of my mind, and think about other things. Because life does go on.

And no one wants to hear you complain.

Everyone seems to have this romanticized vision of how sick people should act.

1) They should never feel sorry for themselves. Of course this is perfectly normal and is part of what makes them human. No matter. They should never ever be caught being upset about their circumstances. And under NO circumstances talk about being upset.

2) They should always be an inspiration to those around them. People like to mention that “they know so-and-so who has it so hard, but never ever complains” They should comfort those around them with their inability to help. Example: “Don’t feel bad! I’m just dandy!”

3) Seriously, under no condition are they ever to be angry! And if they are angry, they should never show it! Never talk about it. Just bottle that rage up and leave other people out of it. Even though any counselor will tell them that anger is a perfectly normal reaction to a painful chronic illness, it will make other people look down upon them.

People are not like this. No one is! Nobody makes a choice to make the best of things, and then NEVER think anything different. If there is, I would love to meet them. They must be some sort of christ like superperson.

I shouldn’t write things like this. I know it will annoy people, but it’s WHAT I FEEL.

And I’m not wrong for that. And if I can’t get it out here, I wont get it out anywhere.

I’m not sure this post will make any sense. But it helps to get things out.

And if you stop and think about it, it’s all very true. And absurdly funny.

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.