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?

Advertisements

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.

This one hurt

I really didn’t want to do this, but I need to take a little time to respond to this last comment someone left me.

                   Sorry, but you are wrong. I remember the first time I saw someone suffering with RA. I remember it as  clear as day. It was in Los Angeles 35 years ago. I was taking a report from a lady who had it real bad in both knees. I saw her suffering and it went right to my heart. It was one of the strongest feeling of empathy I had experienced up till that time. It hit me physically and emotionally so hard I was taken aback as though I had been struck. Even thinking of it now I have the same feelings. I am looking for the person who wants to be proactive because you either sit and feeling sorry doing the same things that got you sick in the first place or you take action. I am not talking about going to a doctor and taking medication I am talking about making changes in what you are doing. There is something you are doing or something inside you that brought this on and it has to be undone. Every disease can be cured it is not about the disease it is about the person. 3 kinds of people who cannot be cured are 1 does nothing, 2 likes to be sick, 3 it is their time God is coming. Everyone else can be cured even cracked pots, they just need the information on how.

This is the stuff that you have to put up with if you are sick in the world.  This is the EXACT thing that I have been blogging about for a year now. People who like to tell you all the things you are doing wrong. If you would only do this or that. I’ve had just about all I can stand of it.

This man has taken it upon himself to judge me and my situation. He has made quite a few false assumptions.

Assumption 1: Im not proactive about my disease. I sit and feel sorry for myself.

Assumption 2: I do this while doing the things that got MYSELF sick in the first place.

Assumption 3: There is “something” inside me that I’m not doing right. It’s MY FAULT

Assumption 4: I am one of the following types of people. A)I am doing nothing about my situation B) I actaully ENJOY being sick C) It’s just the way things are because God is coming to get me

Assumption 5: He has magic information on how easily I can be cured.

If I only cared enough, right? So he believes there are magic alternative herbs that with fix everything. Let me guess…. he makes a living selling them, right? He has to make money off it.

He claims he has sympathy for R.A. sufferers. But I think he doesn’t know the meaning of the word.

I am so tired of people like this.

R.A. is a horrifically nasty, brutal, painful disease. But what is MORE hurtful, and MORE painful, and MORE brutal is people like him judging me and people like me. He doesn’t know me. He doesn’t know anything I’ve been through. And he has no right to boil my entire life and disease down to such a silly silly conclusion.

Sometimes things just happen. Sometimes people get diseases. It isn’t because they are bad people. It isn’t because they wanted it. I feel( not that it actually matters apparently) that bad things sometimes just happen. I personally feel that to think otherwise is a bit self indulgent. And a bit arrogant.

I don’t need to justify myself here.

But for God sake, if you are reading this, try not to do this to anyone else. Trust me, it isn’t helpful.

It’s hurtful and cruel. And you might be sincere and concerned. But it’s not coming off that way. It was like taking a punch to the gut. That there are actually people out there that can think and say such a thing to another human being.

Rheumatoid Arthritis and Religion II

 

Ok, I’ve broached this topic a few times in the past.

Religion and Rheumatoid Arthritis

So there are these people in my life who every time they see me, cant help but offer me platitudes on the struggles of the soul in regards to illness. They offer truly thought provoking philosophical insights into the questions such as ” Why does God lets bad things happen?”.

Um- Ok, so I exaggerated. What usually comes out of their self righteous uneducated mouths is something along the lines of…

“Hey, ya know if you’d jus’ trust God a bit more, he’d sure heal you up just lickety split.”

“I’m real sorry to hear ‘bout you gettin’ turned down for surgery. But if you’d jus give for to God, he could heal you”

“Pssh, what do them doctors know anyhow? All a bunch of thieving’ crooks if you ask me.”

Me: “Yea. But wouldn’t they make more money if they actually did the surgery?”

“Yea, well they’re just so darn lazy, ya know?”

I get emails from my best friends mom. I know she does it because she loves me and it’s the only hope she can offer, but it’s just frustrating to me. It always comes back to the fact that I’m only sick because I’m not doing something right. I don’t trust enough. Or I am just not a good enough person. I am an example for everyone else on how not to be.

It’s funny, because off all the many religious people I know, I haven’t done the following:

( I’ll even just stick with the preachers, chaplains, youth leaders, and preacher’s wives I know.)

I haven’t done drugs.

I haven’t slept around on a husband or wife.

I haven’t blown 400 dollars a pop on coach purses from the tithes of the congregation

I haven’t treated my entire family to a trip to Hawaii on the tithes from the congregation.

I haven’t paid for a new car from donations.

I haven’t spent time in jail for theft.

I haven’t stolen money.

I haven’t had a baby out of wedlock.

I don’t drink and act like an idiot.

I haven’t turned my back on someone because they didn’t believe exactly like me.

I can manage to accept people for who they are and not how I think they should be.

I don’t tell a sick young woman that they must be sick because they are a bad person.

And they have the nerve to talk about me. They have the nerve to tell other people that I could have gotten that surgery if I had even bothered to attend services.

I am the only one out of my many religious acquaintances who has actually lived a moral life. Yet, I am the bad person.

I know there are many many religious many who are wonderful and do good things. I just don’t know very many.

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.

Rheumatoid Arthritis and Stress

Arthritis and Stress: The Reverse Cause and Effect

People with arthritis must confront the same kinds of stress as everyone else. Additionally, living with chronic arthritis creates another medley of stressful problems. Chronic arthritis adds the stress of pain, fatigue, depression, dependence, altered finances, employment, social life, self-esteem and self-image.

During stressful times, the body releases chemicals into the bloodstream and physical changes occur. The physical changes give the body added strength and energy and prepare the body to deal with the stressful event. When stress is dealt with positively the body restores itself and repairs any damage caused by the stress. However, when stress builds up without any release, it affects the body negatively.

A vicious cycle occurs in the relationship of arthritis and stress. The difficulties which arise from living with chronic arthritis create stress. The stress causes muscle tension and increased pain along with worsening arthritic symptoms. The worsening symptoms lead back to more stress.

You can read the whole article at this link: http://arthritis.about.com/cs/indexcope/a/effectofstress.htm

I have found the above information to be very true. Usually I am a laid back person. I don’t let very much bother me. But when things get too bad, and when I’m confronted with a bad situation, or a fight, or become too worried about things in my life, I literally start to feel ill at my stomach. Since the onset of my R.A. I’ve noticed that when things become too stressful, I tend to get the worst flares.

Pain wise, the worst night of my life was at the end of August last year. My father had just remarried, and me and my siblings drove the six hours to watch him remarry someone we didn’t really know. The car trip was hard on me, but the stress of the event was unimaginable. There were huge disputes between my brother and father. Between my new step mother and us. Between our father and her. Everyone was arguing over everything. She was making ridiculous demands and our father was backing her up. Long story short, I was stressed.

Not only that, but I also had to be in my best friends wedding in another week. I had been stressing over the fact that my health was very bad, and I very worried about not being able to make it down the aisle. She went ballistics when I mentioned it. Understandably so. She started crying hysterically. Saying I had to. It would ruin her wedding. Etc. I felt disgusted with myself and my body. I wasn’t on any heavy medication at the moment. And I was already suffering. (In the end I was a bridesmaid. I was walked up the aisle, but instead of standing up with the bridesmaids and the bride, I was dropped off in the front row next to her mother and father. It was a bit humiliating really. Because everyone saw it of course. Then after the ceremony, my partner picked me back up and everyone watched me some more)

So when I got back from the wedding I sat on the couch to relax. I was staying with my best friends parents at the time ( Another reason I was stressed.Temporary housing and all…) I was hurting pretty bad by the time I sat down. Me and my friends mother watched some t.v. and I fell asleep. She covered me with a blanket and went upstairs to sleep. I woke up about three. I still have never felt such pain in my life. I woke up because I had to pee. The second I moved I started crying. At the time my doctor had recently started prescribing me pain medication. But I had left my purse about twenty feet away on the table. I don’t think I can possibly explain pain like that. I started to panic because I literally could not get up. I couldn’t push myself off the couch like usual. I usually push up with my arms. My hand and arms and shoulders were worse than they had ever been. I could not get off the couch. My arms were too weak. My legs were in so much pain they were useless. I thought about crawling, but knew I’d never be able to get back up. Not to mention I wouldn’t be able to kneel or use my knees. It was three a.m. And I thought about the humiliation I was going to face if I had an accident on their couch. It was beyond depressing. I felt like a child. A helpless thing. And I don’t like to feel like that.

Luckily I found my cell found underneath me and as much as I hated to, I called upstairs and apologized profusely and asked for help. They came down. Even with their help, it took me about ten minutes to stand. Every time they pulled or tried to lift, it was agonizing. I eventually stood, and it was even worse. I have had alot of pain in my knees through the past couple years. I have had endless amounts of mornings that felt like pure torture. But nothing compares to that night. Its hard to explain. It almost feel like getting a sledge hammer to the knee with every step. They eventually carried me to the bathroom, then to my bedroom. I took a couple pain pills and went to sleep.

The next morning I went to the doctors and have been on steroids ever since. So when I am hurting, I always look back to that night and remember.

___________________________________________________________________________________________

So I’m having a bit of a flare now.  Things have been looking up lately. Health wise. The last shots I had really seemed to help. They’re beginning to wear off though. But they have been great. And the Enbrel must be working too. I felt better than I have in awhile. So I know it must be stress that’s making me feel to terrible.

I got in a fight with my younger brother. I have never been in such a fight in my life. I have never flown off the handle like that. I am always the peace maker. But I snapped. I don’t know what happened. And now I feel terrible.

It was all terribly silly looking back. But at the time it wasn’t. I have never been in such a rage. I said such horrible things to him. My brother. Who I’ve always been so close to. I said such unforgivable things. And so did he. The ironic part was that the reason I finally snapped was because I was so mad at him because he never can control his temper! And to prove how mad it made me, I acted much worse than he had. We broke things. He got angry and started throwing things, and I hit him with my cane and it seems so ridiculous now. It was so white trash of us. I mean, I beat him with my cane? That’s something we always joke about. Shut up or I’ll beat you with my cane. Haha, right?

I mean, this is so far out of character for me. I’m disgusted. I cant even call him because his phone is broke, and I don’t know where he is. He lives 4 hours away and was down waiting for my dad to return so he could get some money he was owed. I don’t know where he’s at or if he’s ok.

I wouldn’t even let him get all of his stuff. I wouldn’t stop screaming. I told him I never wanted to see him again. I said terrible things. He said I better give him back every penny he has ever given me for doctors. I know neither one of us meant any of it.

I don’t know what made me explode. He’s always had a terrible temper, but usually I just let things slide. But this time he was rude, and I just snapped. Maybe I was just on edge because of not sleeping. I don’t know. But he was in a bad mood, and kept slamming things, and slamming doors, and I got angrier and angrier. Then he threw my sisters keys across the street and let her dog out. And she proceeded to attack some more of the neighbors cats. And that’s is why I exploded. It was all just too much.

Anyways, its all very silly. I wrote him an email. I don’t know when he’ll get it. He is the type of person to drop people when he argues with them. He didn’t speak with my father for 3 years.

 Long story short. I’m in pain. I was doing so good too.