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.

________________________________________

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?

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Ups and down

Its amazing how you can be on top of the world one week, and the next week, R.A. can bring you so far down.

The initial relief I felt from my meds have slowly stopped working and Im in the midst of a hard core flare. The last few of my joints that haven’t been affected have finally jumped on the R.A. bandwagon. Now that my shoulders and ankles are in the mix, the only unaffected joints are my new knees. Jaw, neck, shoulders, elbows, wrist, fingers, hips, ankles, and toes.

On top of that my recent Xrays show joint damage not only from Rheumatoid Arthritis, but from Osteoarthritis as well. I dont even know how it’s possible. Im only twenty four. How is this happening???

I feel, like once again, I let my  hopes up too high.

I have amazing new knees, and I’m still very grateful, but its like my white blood cells want to make it up by attacking my other joints even harder.

Im still so frustrated at the simplest things I cant do. I actually had to miss a grave side service yesterday. Now I’ve missed alot of things in the past couple years. Birthdays, graduations, dinners. But never a funeral. And so that is a whole new low for me.

Im desperately, desperately, trying to stay positive. But I feel like Im loosing the fight right now.

My knee still isnt straight. And my hip pain has made walking almost as painful as before. My rheumatologist gave me the name of a pain management specialist. Im so frustrated I just want to give up. I dont even want to try anymore. Why did I think everything would be solved after my new knees? I never thought everything else would fall apart. But of course. Of course.

There is still a chance that the meds will start working again. It’s only been two months. Im still doing my physical therapy at the clinic and here at home. Im not going to stop of course, but it’s hard to stay motivated right now.

I went out to eat with a friend a couple night ago. The retraunt is right off the highway so it was really loud. A very large man started yelling at us across the parking lot. I looked at my friend and said ” Is that crazy man yelling at us?”

As we got closer, he kept gesturing at me, and said “What happened? Whats wrong with you?”

I swear on my life this happened. And so I tell him and he calmly said “Oh, ok.” and climbed into his car and drove away.

Is this happening to anyone else?

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.

Reflections III

I’ve managed to make it through my entire twenty four year life span without watching What’s Eating Gilbert Grape.  Which is odd. What with my obsession with all things Johnny Depp related. I finally watched it a few days ago

Of course I loved  it.

Do you remember the scene where Gilbert wants to introduce his girlfriend to his mom. Her immediate reaction was a slightly panicked no.

She finally agrees. They are introduced and the first thing she muttered was a pitiful ” I haven’t always been like this”

It immediately brought me to tears. Because I think the same exact thing every time I meet someone new.  The first thing I always want to say is,

“It’s not my fault I’m like this”  or

“I’m only overweight because of the steroids.” or

“This isn’t me. I’m not the person I look like. I’m a different person behind the weight and the twisted and deformed joints. ”

I don’t know why but the thought of people seeing me like this is terrifying. 

It used to be easier before the R.A. made such an obvious outwardly physical appearance.

When I first got sick, I hated telling anyone. I just stopped returning the phone calls from a guy I was dating at the time. I never told any of my professors. I let my Algebra professor think I was lazy and unprepared instead of explaining that I missed class because I was in so much pain that I couldn’t drive to class.

At work when I started having to wear braces on my wrists, I told everyone it was because I was so clumsy. I was limping because I twisted my ankle.

What is it that makes it so difficult to show weakness?

And how come after everything I’ve been through I still give a crap what complete strangers think about me? I never did before.

I’ve always been very independent. I’ve always been different from people I knew. I definitely marched to my own drums. If everyone was doing one thing , I immediately felt the need to do something else. I never felt the desire to get drunk or high or sleep around when I was in school like most people. I worked in a bar, but hated the feeling of being drunk.

I always made friends with the quiet, shy, people who didn’t have anyone. I was always walking around with a novel stuck in my face even though it was “lame”

I hated people who thought they were better. I abhor social hierarchy. I abhor unnecessary and extravagant material possessions. Instead of spending three hundred dollars on a class ring I donated the money to the ASPCA. I couldn’t make myself care less if someone snubbed their nose at me.

What is it about my own physical weaknesses that is so humiliating to me? I feel like it turned me into something I hate to be. Not the sickness. But my reaction to it.

Sometimes I feel so ashamed about how I’ve gone against all my beliefs.

I’ve always considered myself a strong person.  I have been through alot worse in my life than physical weakness. But I’ve always handled it well. I’ve always been able to be proud of myself. But the longer I’ve dealt with this illness, the harder it is to stay positive.

As much as I hate to admit it, one of the hardest parts of this entire journey with R.A. is how people perceive me now.  I hate that that is how I feel. But it is.  It’s something I struggle with but no matter what I tell myself, or what other people tell me, it’s something I cant get past.

But I really really want to.

Reflection II

I have serious issues with sharing with people.

And sometimes I get angry and want to blame other people for that, but the truth is that I am the one who doesn’t feel comfortable sharing things.

I am the one who does not like appearing weak. I am the one who hates to cry in front of people, and I am the one who always puts on a happy face.

That’s why I find this blog so helpful. I’m able to say all the things Im thinking but would be too ashamed to say out loud. Even to my closest friends.

I can say things here and people know where I’m coming from. People understand and tell me they feel the same way.

I feel like I focus so much on the negative here. But this is where I can let those sorts of thoughts out. This is my one good outlet.

I have outlets for the good things in my life.

But I’m going to take a page from Cateepoo ( http://thelifeandadventuresofcatepoo.blogspot.com/) and lists some things that have made me happy lately. Her posts are always upbeat and are constantly inspiring me.

 

The sky turning pink before the sun sets

Wind blowing in my hair, and sprinkles of rain falling on my head

My dog being scared of thunder and snuggling up to me as we watched Mr. Smith goes to Washington

Teaching myself to knit. And being outrageously terrible at it. Lol.

Conversations with my father that last for hours and still leave us completely disagreeing with everything the other person said. It gives us an excuse to argue more:)

An old man driving with a little dog in his lap

A new pair of pink shoes I was given as a gift. Theyre just my style.

Netflix and getting a new amazing documentary in the mail.

Having a safe warm place to come home to each night. Because I know so many people are not so lucky.

Garish Christmas lights hanging on my bathroom ceiling year round.

A really hot and very bubbly bath

Hmm. Very nice. Makes me want to get my camera out again. 🙂

Lucky?

I just don’t know what’s going on in my head lately. I keep swinging back and forth between happy and sad.

I know I’m lucky. I say it like a mantra. I’m lucky. I’m lucky. I have amazing friends, and family. I have people who care about me. It could be so much worse. I’m so lucky. I’m so lucky.

Why is it that I can’t stay positive? Sometimes I feel so uplifted, so full of life and love and inspiration that I could just bust. And then I always seem to fall back into my a slump.

I don’t want to be like this. It has been my mantra today. I don’t want to be like this. I don’t want to be like this. I don’t want to be like this.

I want more than this. I want to travel. I want to finish school. I want so much right now and I feel like I’m wasting away. I haven’t accomplished anything for three years now.

This was suppossed to be a setback. Something I could overcome with enough positive thinking and hard work. Right? Isnt that what we are always told? Lovely inspirational stories of people overcoming the odds?

I’m certainly not inspirational.

And now I feel guilty for feeling this way. I AM lucky.

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.