I’m still amazed

I’m still amazed what a difference insurance makes. I just bought my months supply of prednisone and methotrexate. They used to run me about fifty dollars(which I didn’t always have).

It only costs me $2.10 now. 

I haven’t been sent any obnoxious-ulcer-inducing bills in months. Now that I’m receiving SSD I don’t have to sit and worry about how I’m going to have enough to eat and also see my rheumatologist. No more decisions of whether or not to pay for medicine or electricity.

I think the lack of stress is helping just as much as anything else.

I don’t have to call my dad or sister every month and ask for money. And then have them say they wish they could, but just couldn’t spare anything.

I am very very thankful for the change in my life lately.

I’m going to be 24 soon. I haven’t done a thing with my life since I was twenty. It’s very hard for me because I have always been an overachiever. I went from having a full time job, a part time job, and going to school full time to nothing.

I want to finish school so bad it hurts. But I also don’t want to push myself too hard too soon. My doctors say I just need to focus on my health at the moment.

I’m thinking that if I feel up to it, I may take a couple art class at my community college this summer. Just to get back into thing.

My posts always get off subject.

ANYways, Im amazed……

The new place

Okay, well we are finally settled in. Everything is lovely. It was definitely worth the trouble. But Lord was it frustrating.

First of all my computer crashed the night before we moved. Three computer guys, way too much money, and three weeks later it’s finally up and running. But I lost all my files. All my photographs. All my digital drawings. All of my music and videos and all my little notes and junk I’ve accumulated over the past 5 years. It’s very heartbreaking. I had about 8GB of photography I had never printed off. It was a big part of my life before I got sick. And its one of the things I’ve missed the most. Now its all gone. And I feel like I’ve lost a part of me. I’m sure that sounds completely silly. But there is so much that I’m not able to do anymore. And now I don’t even have a record of what I was once capable of. Bleh. I don’t want to think about it anymore. It makes me sick to my stomach.

Anyway, the actual move was quick. I had to pay three guys I didnt know to move me. I live in a small town, so theres nothing even close to professional movers. I spent weeks packing slowly and labeling every box to which room they needed to be placed in. When I got to the new apartment, I found out they had stacked boxes on top of each other in the livingroom almost up the ceiling. Some of the boxes I found on the bottom read: Very Fragile. Be Careful! or Precious Memories. Break and I’ll cry.

They clearly did not read them. On top of all of that, it rained. Yep. It had not rained in a month, but it rained on my things. And there was no covered trailers. It was not a fun day.

But now I’m here. All of my pictures are hung. Last night I finished organizing my walk in closet. I havn’t had a decent closet since I lived at home. In fact, since I was seventeen, I’ve always kept my shoes in an enormous orange decorative bucket. They are finally laid out. And I havnt been able to hang up all my clothes since then. Ive kept them in boxes and drawers. And now they’re finally hanging. Its actually pretty funny though because I havnt been able to wear anything but slip on shoes in a year, and I have an enormous amount of clothes and none of them fit. I counted twenty three pairs of pants( which sounds obscene except for the fact that they range from size six to eighteen. Thanks alot prednisone!), and I cant squeeze into any of them.

My bathtub is amazing. A friend of mine bought me 4 different bottles of bubble bath and I’ve been soaking that up. I also bought a little bath pillow, and I’ve soaked my knees alot. I didn’t realize how much a very hot bath could help.

The best part about the new place is the pool. And no one is ever in it between the hours of 11 am to 5pm.  Ive been swimming several times a week.  I recommend anyone with arthritis to exercise in a pool. I feel weightless. Which is saying something.

Rheumatoid Arthritis and Stress II

I’m in for a very stressful next few days. My brother and I are moving.

Last year the town I live in built an apartment complex for low income renters. Its not like anything else that’s available. Its very nice. They have a certain minimum monthly income you have to meet. Which is also good. They say it keeps crime down.

The day I found out I would be getting disability, I called them to see if they had any two bedroom ground floor level apartments available. They said they didn’t have anything at all available and that there was quite a waiting list. She told me I could bring in a deposit if I wanted to be placed on the list.

The conversation went something like this

Me ” No that’s ok. I really am going to need a downstairs apartment since I’m handicapped. And I think it would take far too long. Thank you though.

Her: “Really? Hang on one second” She placed me on hold

When she returned she said ” You wont believe this but we do have one two bedroom ground floor handicap apartment. The current owners are moving out in August, and the people who were supposed to move in didn’t bring their deposit in on time, so if you want to bring it now, the apartment is yours”

Amazingly good luck, right? So of course I did.

Here are a few reasons why I am ecstatic to move.

#10 I wont have to worry about our lawn anymore. I wont have to pay someone to weed eat and rake, etc.

#9 We will be within walking distance of a large retail grocery store.

#8 We will be within walking distance of my pharmacy. My brother will be able to pick it up for me.

#7 The neighbors cats wont be making babies under our house at 3 o’clock in the morning.

#6 The neighbors cats wont be defecating on my porch.

#5 We will no longer be living next to the car stereo and tint shop who plays rap music as loudly as possible well past midnight. In fact, I hear bass as we speak. Instead we will be surrounded on all sides by large empty fields.

#4. I will have my own bathroom. And there will be a garden tub so I will finally be able to soak my knees( The bathtub here is tiny and my knees wont bend under the water. Also, it runs out of hot water quickly.

#3 There will be a large swimming pool and hot tub. There are already two little old ladies who use the pool early in the morning for their water aerobics. The were in the office when I filled out the paperwork, and said I could join them. Haha.

#2 It will be much less expensive. We will not have to pay water or gas. Just rent and electricity( which should be much more reasonable than this old poorly insulated house). It gets very hot here. I think there have been 30 some odds days this summer with temperatures over 100 degrees. So needless to say, I’m unhappy with the current electrical situation.

#1 People will not come to my house at all hours of the night looking for K-dogg and G-Money so they can buy dope.

I’d like to elaborate on my number one reason I’m glad to leave. Apparently the previous renters of this property were widely known for their dope selling. Almost immediately we had….. how should I say it? We had some of societies less….valued members knocking at our door all the time. The worst time was shortly after moving in. I heard a pounding on the door. It woke me up immediately. It also woke my dog up and she started barking incessantly. We have two front doors. One leading to my bedroom, another leading to the front door. He was banging on my door. I knew no one I knew would be banging on my door without calling first, so the first thing I did was check to see that both doors were locked. Then I peeked behind the blinds and saw a complete stranger. His ensemble consisted of extremely baggy pants, an over sized white tee shirt, and white sneakers. Typical I would say. He saw me look and started yelling and jiggling the door knobs to get in, then he took off. I grabbed my cell and hobbled to the back door. I don’t think I’ve moved so fast in years. Talk about adrenaline. I had been bed bound for the whole day.

I could see before I got to it that the back door was unlocked! I had told and told and told my brother to keep them locked. I got to it and quickly bolted it. The scary part is that the back porch is screened in with walls of windows, and the backdoor that leads to it had a huge pane of glass. We hadn’t put curtains up. The door that leads from the back porch to the backyard is only a screened door, and if you tug on it it will open. Regardless of whether or not it’s locked.

I dialed 911 as soon as I got to the back door. The operator was so sweet. Got my information and stayed on the line. The cops were there in about one minute. I was shocked. The caught him in my backyard. Im sure he was going for the back door. The operator gave me his name. Carlos something. Asked if I knew him. I did not.

The cops came in afterwards to get a statement. I asked them if he was on crack or something. They said no, but he was intoxicated. They took him “downtown” Haha.

Since then we’ve had loads of people knocking and asking for K-dogg or G-money. I swear to god. I couldn’t make it up. The situation could not be more stereotypical if I tried. Usually I just tell them wrong house and they leave without trouble.

One night we had two visitors, one guy knocked and asked for them so I told him he had the wrong home. He was very nice. Said he was from the circus that was in town. (That’s right. A genuine Carney came to my house! How exciting.) He apologized profusely for bothering me and letting my dog out.

I sat down afterwards but apparently forgot to lock the door. I heard another knock about an hour later. Before I was even out of my chair, someone walked into my room! I just stared at him. He was a very angry looking young gentleman. I asked him what he wanted. He said he needed to talk to g-money. I told him it was the wrong house, and he turned around and slammed my door and stormed off.

That’s when I decided to leave when our lease was up. Conveniently enough, it was up in August.

So here we are. Schedule move in day is Monday. Unfortunately I have a doctors appointment at 7:15 am, and physical therapy at one. It should be ok though. I have labeled everything very specifically.

I have several strong guys lined up. They have been promised beer and pizza. We have been packing for two weeks. A little bit at a time.

I’m rather excited but I am dreading the level of stress that I am sure will accompany this. Wish me luck!

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.

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.

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.