Happiness

I had a doctors appointment today, and I’m going back on enbrel!!!!!! Side effects be damned.

Starting……..tonight!

My white blood count is dangerously high, therefore i must get off the prednisone!!!!!! Oh happiness, happiness, happiness.

Good things can happen. Haha.

Breakdown

I had a complete mental breakdown over a pair of pants today.

Not the pants so much as my inability to get them on.

I couldn’t stand long enough to get them on.

My hand hurts to bad to pull them up.

My ass was too big to get them up over.

So I had a breakdown. I screamed. I yelled. I cried until I got a migraine. I scared my poor dog, and my brother.

Its almost funny looking back. Almost.

Problems

I want to be positive. More than anything I want to be positive. I want to put on a brave face.

 

But sometimes its so hard. Its so damned hard. Sometimes it is impossible.

 

I just want to be normal. I want to be able to talk to people without getting depressed.

My best friend for the last 14 years called me today. Told me how depressed she was. Guy problems. She always has guy problems. Even when she has no problems, she invents some. She thrives of problems. The whole time she was talking, the only things that was going through my head was:

 

“ I wish I had your problems. I haven’t even  had a guy look at me in years. Who would want me? Who would want me? Who the hell would want me?”

 

I cant even look in the mirror. Who would want anyone with my problems? Who would choose that?

The crazy dosnt fall too far from the tree

I think one of the hardest parts of dealing with chronic pain is the fact that I can’t talk about it like I would like.  People get tired of hearing about it. I don’t blame them. If I heard someone say ” I hurt” everyday for years, I’d get sick of it to. There is just so much you can say in response.

So I find myself keeping it bottled up to make it easier for everyone. Especially with my father.

Not to go into detail or anything, but there were a few years in my life when we did not speak to each other. After my mother died, my dad sort of lost it. He made some bad choices and he really really hurt his kids.

Now all of that is in the past now. He has asked for forgiveness. I have forgiven him. We have a fairly strong relationship now and he is there for me whenever he can be.

Now though, he has gotten it into his head that me being sick is somehow his fault. He has read alot about how trauma and stress may trigger chronic illness in some people. I have read about it alot, and I find it very interesting. It is something I’d like to read more about. But there is no way I can blame my father for my being sick. But that is the way my father is. He is a very hard man to explain. He somehow borders between being very rational and very superstitious and religious.

After my mom died, he honestly thought it was his fault because he had stopped going to church. So now that I’m sick, he somehow thinks he caused it.

To be honest, I find it a bit self centered of him.

Long story short, I try not to complain too much around him. He takes it too personally.

It is not just him though, I just hate the way I sound when I talk about it. I sound like a hypochondriac. I mean, its so damned redundant. ” I hurt. I’m miserable. I feel like death.” Those phrases are as common as “Hello. Good morning. How are you?”

I have a friend who was genuinely offended once. I asked if we could stop and get some bottled water before we left town so I could take my meds. His response was ” Oh, don’t do that. Why would you talk about it? Are you trying to get me to feel sorry for you?” I don’t think I have ever been so hurt. You could tell it was something he had tried to keep back and finally had to say. And that’s how he thought of me. And I’m sure he isn’t the only one. And it’s so ridiculous.

Why would I talk about it? Because it is the single biggest thing in my life. Because I don’t go ten minutes without thinking about it. Because I always hurt. Because people treat me differently. I am someone with R.A. It’s in everything I do. It affects everything. It influences all my decisions. I feel it in every single step I take! How the hell do I not think about it?! You tell me how I should feel. And I will gladly try to feel it.

But of course I did not say those things. I calmly explained to him that if I did not take my pain meds before we got to the movies, I literally would not be able to walk into the theatre. I told him that I thought since he was my close friend, that I could talk to him when I had problems. He didn’t say anything in response. And this was from one of my closest friends.

It’s just very isolating. No one can understand this unless they’ve lived through it.

So its almost turned into this taboo subject you should not mention. The giant purple elephant in the room. For the good of the whole, keep it to yourself so the rest of the world can be less uncomfortable with their inability to help.

And the results are?

I wont know for another two to three months.

I can not help but laugh. After over two years, I finally had my court date. It went really well. There is really no way they can not rule in my favor. There was a vocational specialist in the room. By the end of the session, they had determined that there was not a single job in the national economy I could perform at this time.

And then they tell me I will have to wait another two or three months to get my decision. Hahahahahahaha.

I mean seriously, the thought of having to wait that much longer for medicaid makes me want give up. I don’t think it will happen sooner than 4 months. Hahaha. Its insane.

 

Disabilty

I am so nervous. I am so unbelievable scared.

I just spent an hour on the phone with my lawyer. My case is Monday, and my entire life is dependant on it.

I know I should not have anything to worry about. I have always been honest about everything I’ve written and said to the social security administration.

But I’m still so nervous, I’m fighting back tears. My hand are shaking so bad I can hardly type. The knot is back in my stomach. I can not even think about this going badly. I honestly can not do this any longer if I don’t get help. I am so proud of myself for holding myself together for so long, but I know I can not keep going if something big doesn’t change. I absolutely can not continue like this.

God, I never think like this. I’m an emotional wreck right now.

But you know, since I became sick, Ive always held it together because I’ve had something to look towards. At first, I just focused on the fact that I would be ok once I was able to start seeing a rheumatologist regularly. Then it was “I’ll be ok once these meds kick in.” When these hopes started vanishing it became “I’ll be ok once I can afford better meds” When it became clear that was not going to happen it became “I’ll be ok once I get Medicaid.” Then there was “Everything will be better once I get on Enbrel.” Its supposed to be a miracle drug.

So those hopes have held me together through over two years of pain and misery. And they have all failed me. They have all come to nothing. And in the back of my mind I always have the hope of returning to school. And over the past few months, I have had to come to the realization that I may never be better.

And all my hopes, and all my dreams, everything I wanted for myself…..they may never happen.

And I had some big dreams.

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.