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.

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.

Lack of Insurance

I watched Sicko today. Here’s a summary I found online:

Note to the president: Here’s your chance to lock up Michael Moore. The radically fierce and funny fireball he aims at our health-care system is a flat-out invitation to steal. First, Moore shows us how France, England, Canada and – yikes! – Cuba actually help sick people instead of letting them wither and die for lack of health insurance. Then he instructs us to loot those places for ideas. Anti-American? Hell, no. Moore argues that if another country builds a better car, we buy it. If it crafts a better wine, we drink it. Why not free universal health care?

As the agent provocateur of modern cinema, Moore is a moving target. Three of his docs (Roger & Me, Bowling for Columbine, Fahrenheit 9/11) had the bad taste to be box-office hits instead of slouching quietly to oblivion like most documentaries. Look for the reform spirit of Sicko to spark fresh attacks from haters who smear Moore as a fat, shambling, condescending grandstander eager to shade the truth to force a laugh or simplify an issue. Back off, guys. For one thing, he’s dieting. For another, Sicko is a movie whose time has come, even if the Treasury Department is already on his case for illegally taking a boatload of lung-sick 9/11 rescue workers to Cuba for free medical care they can’t get at home. Another dumb move from the Dubya camp. While political candidates sidestep the real health-care issues, like puppets of the pharmaceutical industry that finances their election campaigns (take that, Hillary!), Moore brings a blunt clarity to the table. In an era when the mainstream news media have lost the public trust to Jon Stewart and The Colbert Report, Moore’s brutally comic take on matters of life and death is just the ticket.

To prep for the film, Moore used the Internet to solicit health-care horror stories, not just from the 47 million Americans who don’t have insurance but from those who do. It’s hair-raising, especially when we watch an L.A. hospital dump a dazed patient at a homeless shelter because her insurance has reached its cap. In France, no resident is denied care; that’s why the World Health Organization ranks it number one (the U.S. is thirty-seventh). Moore, who shot 500 hours of film that he had to whittle down to two, puts a human face on those statistics. He traces the privatized health system back to Nixon, who figured, “The less care they give them, the more money they make.” He got that right.

Does Moore cut a few corners? Sure. Some of the European hospitals he visits might be spiffing up for the camera. The drugs an American patient buys in Havana (five cents there, $120 at home) might not be up to FDA standards. And maybe the French are pushing it by doing a patient’s laundry. But the weight of evidence Moore marshals for taking the profit motive out of medicine is overwhelming. In a summer of dumb, shameless drivel, Moore delivers a movie of robust mind and heart. You’ll laugh till it hurts.

It was brilliant. And I believe I am the perfect example of what happens to someone in this country who doesn’t have health care. And can not afford medical coverage.

You have a disease that many people are able to control and live with. I’ve read blogs about people with R.A. who own businesses, run marathons, have a family full of little ones to take care of.  People who are dealing and coping, and can be positive.

But the reality is that when someones ability to fight their disease is based on their ability to pay, then something is wrong. Something is very wrong. I am the perfect example of a disease taking over when it never needed to be that way. I have been denied help over and over. I have a file full of paper work. I have denial after denial. The reasons I have been denied vary from my age, to my education level, to the fact that I am not pregnant. The reasons never make sense. I’m telling you, I still cant make any sense of it.

Every month I have to worry about how I am going to pay for my medicine. It’s humiliating. And no one makes it easy. This month my father told me he just didn’t have the money. That’s it. Just said no.

Then my doctors office called me and said they couldn’t fill my prescriptions anyways because I haven’t had labs done. So I had to make an appointment. Which means my seven hundred dollar tab is now going to be well over a thousand. And that’s just with the bare minimum. I cant afford extensive blood tests, or cortisone shots. Or the Xrays I need taken of my neck which tends to get stiff. Or Physical therapy to help my knees. Or a dermatologist to see whats causing this outbreak I’m having.

My sister sent them the minimum payments for May June and July. So she cant help me anymore this month. My doctors office is really great to let me make payments though. None of my other doctors ever let me. But they will come after you if you miss payments, or if the tab gets too high. They call and say “How would you like to make your payment today?” Oh. If it was only so easy.

Not to mention the gas. Lord, its going to cost me over thirty dollars just to get there.

All the money I had left from my younger brother is gone. It went to paying bills. My autistic brother lost a hundred dollars when I sent him in to pay our electric bill. A hundred dollars is such a big deal right now. So it took every last cent I had to make it up. Wait. That’s not true. We have eighteen cent left in the bank.

And its only mid month and there is no way our food is going to last until the first.

Oh yea, and my car insurance lapsed.

Sometimes its very overwhelming. And the stress doesn’t help.

Rheumatoid Arthritis and Dieting II

I’ve actually managed to gain another seven pounds.

Skirts are no longer an option because the stretch marks are now very bad behind my knees and now reach half way down my calves.

I no longer own a bra that fits. I never thought I’d be annoyed by rapidly expanding breast. If it wasn’t for the stretch marks I wouldn’t be.

I am now down to 5 mg of Prednisone and I am miserable. I cant move. I hurt. And I’m heavy. So far the diet has not been successful. I’m going to keep trying.

I have a doctors appointment in a couple days. I cant wait to hear about all the things I cant afford to do.

On a lighter note, my feet stopped swelling.

 

A different sort of pain

Today I was hit by a car.

Ha. Ok, So maybe the story isn’t quite that dramatic. But I was injured. And there was a vehicle involved. In fact, it was highly embarrassing. And now I am in a large amount of pain. And for the first time in years, its not because of my R.A.

I went to the movies today. I haven’t been since Sweeney Todd came out. And it had been about six months before then. So I was relatively excited. I haven’t been out of my house in a couple weeks. So my cousin drives, and she drops me and my other cousin off at the front. Well, I had just stood up and stepped out of the car and she starts to drive off. Problem being I was still only halfway up and didn’t have my cane yet. So I yell at her to stop, and in her panic, she mistook the gas pedal for the break pedal. And I went tumbling. I literally though I was going to die. Ha. Its really pretty funny looking back now. But man is my pride hurt.

The funny part of course is that two younger semi attractive males saw this happen. They were walking up as we pulled up and at the time I was thinking how I hated people seeing me and I wished I could wait for them to get inside before we got out. But we were already 10 minutes late to the movie. Now I’m sure they saw me. Of course they saw me, at one point my cousin screamed my name as I was falling down. Hahahaha.

Anyways, my knees bent like they hadn’t in years. My calves actually touched the back of my thighs. My left leg was twisted quite a bit, and I think I bruised my tailbone. And my back, oh my poor back. It hurts to sit here at the moment. Im just thankful I landed on the curb and she didnt run over me with the back tire.

Lord what a day. It took me several minutes to lift myself up. I had mascara streaming down my face. I finally pulled myself together and insisted we see the movie anyway. Now I’ll never know what happened in  the first 10 minutes of Baby Mama. It didn’t hurt as bad at the time. Maybe it was the adrenaline. But it’s getting sorer and sorer.

It’s still kind of funny.

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.

It’s not me. It’s you.

OK, maybe this is selfish of me. But I just going to go ahead and say it.

I am so unbelievably sick to death of people.

I feel like I spend my days taking care of everyone else. I have had an awful week. Full of pain, lack of sleep, and extreme nausea. I just want to be left alone. Wednesday I was trying to sleep off my nausea and I kid you not; my phone rang thirteen times in under 3 hours. I could not make this crap up. Everyone wanted something. The same people would call over and over. Everyone wanted to complain about their problems and whine incessantly about every little problem.

I cant sympathize with them. I can not make myself care. And it isnt their fault.

I just want to be a recluse.

One of them even decided to just showed up after I ignored her calls. She came to my house, and when I didn’t answer the door, she walked into my home. She walked all the way to my bedroom. When she opened the door, I put my head under the blanket. She came in anyways! She sat in there for two hours. Even after I told her how terrible I felt. She still kept talking….

I mean, my God, I was not even wearing pants! I was in bed of course, but that is not the point. No pants=no visitors. Don’t people understand this? In what culture is that ok?

So, Im just going to have to be less nice. I want to be left alone to wallow in self pity.

I do ok alone. I am not one of those sad miserable people who shouldn’t be left alone because they become depressed or suicidal. I’m one of those people who become depressed when I don’t have enough alone time.

But I can not do that. Because the people in my life think it is all about them. Everyone thinks it’s about them.