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.

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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?