I am Loved

I had a birthday this month. I’m twenty four now.

I decided I wanted to go out to eat for my birthday this year. I haven’t really done anything the past couple years. I casually mentioned it to a few people. 16 people showed up to my favorite Thai place. I felt very loved.

I just found out my dog needs double hemorrhoid surgery. Almost everyone I know has pitched in a few dollars. They know I would be a complete wreck if anything happened to her. My dog is like my child. She’s been the one constant in my life for years. She makes me smile everyday. Every morning I wake up to her little wet nose burrowing into my neck and her tail wagging. Everyone has really come through for me. My cousin has been on a crusade to find donors. And she has! And I feel very loved.

I live with my older brother. He has a form of autism. He is high functioning, but needs someone around as a caregiver. But he is the most wonderful person I know. He cares for me more than I could ever care for him. Everyday he asks me if I need anything. If he can get me a drink, or if I’m hungry. He is everything that is good in this world. Of course he is not perfect( none of us are), but he always makes me feel loved.

My best friend has been staying with me for the last month. She is trying to save up just enough to get into her own apartment. Every Thursday I have to go to aquatic therapy. I find it humiliating, and difficult. Every Thursday(even if she has to leave work) she makes sure she is there with me. She gets in the pool with me and keeps me company. She does the exercises with me and keeps my mind off of the pain. I know it isn’t always convenient for her, and that she’s busy. But no matter how much I tell her she doesn’t have to come, she knows I like it so much better when she is there. So she makes sure she is. She makes me feel loved.

I have some very precious people in my life. I wasn’t as close to anyone before I got sick. I was very much a loner. A very independent person with a one track mind set on accomplishing all my goals. In a way, being sick, and learning to accept help has allowed the people in my life the opportunity to show me how much they care. I never allowed it before. I never gave them the opportunity. I had to reach my lowest point to let people in. It seems so silly looking back now. 

As long as I can remember, I have always thought that the best thing I could ever do was rely on myself. If I was completely self reliant, then I could never be disappointed in people, because I would never need them.

I didn’t even give them a chance…… They haven’t all disappointed. Some of them have made me feel very lucky to have them in my life. So I know at least some good has come out of all of this.

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.

Vacation

I’m going on my first trip since I became sick.

I’m all sorts of nervous. I wrote an email to another blogger who responded with this post.

http://typeawithra.wordpress.com/2008/09/16/traveling-with-ra-part2/

I’m traveling from Texas to Oregon with my father and new step mom. They are going for a church conference, and thought I could use a break. So they are letting me and my sis tag along. They upgraded to a two bedroom cabin.

I’m not sure what all I will be able to do. I’m taking my wheelchair, so I’ll be able to do much more. But there is a layover in Colorado and I’m nervous about it.

There are alot of things I would like to do. So we’ll see how handicap accessible they are!

-The most exciting part of the trip is that I get so see the Redwood forest.

-And we are taking a trip out to the Roloff farm from Big People Little World. I shall buy a pumpkin. And most likely do nothing with it. 🙂

-I saw a special on the travel channel about the top ten wonders of the west. The Columbia River Gorge is on the list. Its only as couple hours from where we will be.

I really hope I can do everything.

What I’m most worried about is the fact that there wont be anyone there who can give me my shots. I’ll be gone eleven days, so I can’t go that long without it.

I have such an irrational but completely real phobia of needles. If it came down to me giving it to myself or not going, I would still be too scared to do it. I would opt out.

I leave at an ungodly hour on Sunday morning.

Please wish me luck. I don’t want to miss out on anything. I’m very happy to be going.

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.

What would I do different?

What would I do different, knowing what I know now? (Ill keep this strictly R.A. related, or I’d be here all night)

Knowing what I know now, I would have stolen, cheated, begged, borrowed, scammed; done whatever it took to get myself proper medical care when I first learned about all this. They always say how important it is to catch this disease early. How important it is to be aggressive with treatment. And I am a testament to this. I never had to get this bad. I never had to get to this point. Everything in this life boils down to money.

I’ve always considered myself non materialistic. Even in high school, I argued with my friends over how silly things like big TVs and expensive cars and clothes were. Things like that never have, and still don’t hold any appeal to me. I’ve always thought I would be ashamed and disgusted to spend money on petty and insignificant things while there are so many people in need in this world.

The point is, I’ve never really been very bothered by lack of funds. I’ve been working since I was old enough. I’ve always been very responsible with my money. I’ve taken care of myself since a young age, and when I haven’t had enough, I did without.

God, I wish I could go back. Those first several months, when I lost everything. I should have begged everyone I knew to help me. I was way too full of pride. I suffered instead. I would have rather suffer than beg for help. Oh the depths we sink. My father helped when he could. He was going through a nasty divorce, he lost his business. I didn’t want to burden him. I should have begged him. I should have asked for him to do whatever it took. But I downplayed it. Of course I can wait to go to the doctor. He was broke, he had to take care of himself. He needed to get out of that awful marriage that destroyed our family. That’s all that mattered. She took everything but my mothers house. She took everything that wasn’t bolted down. She took everything down to the kitchen cabinet knobs.

My older sister moved away as soon as she graduated. She also moved out of my fathers house while in high school. I eventually moved in with her. But after a year of that, it was too much on her. She couldn’t take care of herself and me. She made decent money, but I didn’t bring in anything. She is not like me when it comes to money. She does not save, she is not responsible, and she likes to buy things of no use. Every time she bought anything I’d feel a little resentment, and then guilt for feeling that way. It was her money to spend however she wanted. I had no right to say anything to her. I’m already mooching off her. Already eating her food. Already jacking up her utilities. So she didn’t have money to help with with meds or doctors visits. Who was I to say anything? I should have begged her. I should have pleaded with her to do whatever it took. Nobody understood how serious this could get. They still don’t get it. I shouldn’t have kept it inside. I should have told them to make it a priority because it never was.

My younger brother is my biggest help these days. He’s made sure I’ve had relatively steady doctors visits lately. Even if they are just the bare minimum. At the time all this happened, he wasn’t really in the picture. In fact, I spent more time worrying about him than anything. He and my father had a huge, nasty, violent falling out after I moved out. It was bad. Very bad. He moved in with me and my grandmother. He has always been a very loving funny person. He was so sad. I’m crying just thinking about all of this. I received more than one call from him at the time that he wanted to die. Well, he moved in with us. I took care of him. My grandmother couldn’t. She was living on a very low fixed income. She couldn’t afford to feed and clothe two high school students. So it’s always been me and my little brother. Eventually he started acting out. He had some serious anger issues. He was diagnosed with bipolar disease. He dropped out of high school, and moved here and there. Different states. He would just up and move. So at the time all this happened I didn’t want to bother him. He had enough on his plate too.  He was barely keeping his head above water. But a small part of me hoped he would see how much I needed help. Without me having to beg. A small part of me hoped he would help me because we were always a team. I always took care of him. Even when he didn’t appreciate it. Even when he was so full of anger and depression to even care. So maybe I was a little bitter. And then of course I would feel bad for that. He always had it so much worse that the rest of us. He doesn’t need a sick sister to hold him down. I know if I had begged him he would have helped. I know if I had sat him down and told him I couldn’t make it unless he pulled it together and helped me, then he would have done anything he could. But I didn’t. I wish I had.

This is no ones fault but my own. But hell, even I didnt know how bad it could get. And how quickly it could go bad.

Rheumatoid Arthritis and Religion

And here it is. In case anyone was wondering what I find to be the most frustrating part of chronic illness, I’ll tell you. It’s not the pain. It’s not the inability to do the simplest things. It’s not even the feeling of having your life on hold. The single worst thing is the way people treat you. And the worst way people can treat you is to act like its your fault you are sick.

I live in the bible belt. Very few people that I come into contact with in day to day life are not religious. And more often than not, they are very religious. I was raised by a very religious man. And even though my mother was more of a free spirit, my dad took his religion very seriously.

My best friends parents are the most religious people I know. They are also unbelievably wonderful people. They are truly amazing people, and I believe that everything they do they do out of the kindness of their heart. That being said, I have to say that they hurt me very very much. But I’ll talk about that later.

I have been around religious people all my life. I even briefly worked for a gospel station. I didn’t last long. I refuse to do into detail about the things that happened there. Lets just say that I was disgusted.

Now, I don’t want to get into a discussion about my own religious inclinations. Or dis inclinations. I have seen a lot of wonderful things happen in the name of religion. But I have seen alot more bad. A lot more.

If you have ever been around the self-righteously devout then you will know that they always believe they have the answer. There is always a reason for everything. There is always a lesson to be learned from suffering. There is always a way to be delivered from suffering. If you have enough faith, God can do anything, right?

So what if you have been prayed for by every preacher you can? What if those claiming to have healed others in the name of God fail to heal you? Well than there must be something wrong with you. Right? Well that’s what some would believe.

So here are the possibilities.

You either don’t have enough faith yourself. You are keeping you from being healed. ( I get this the most)

You have bad influences in your life. God is punishing you for reading your horoscope, or reading Harry Potter, or something equally silly. ( I also get this alot)

God is punishing you for not attending church.

Or even better, God is doing this because he loves you and by making you completely miserable, he is teaching you life lessons.

It couldn’t be, it just absolutely couldnt be that I just have some really stupid white blood cells. My older brother is autistic, I don’t hear anyone blaming him for it. ( And I better not ever).

The point is that it is hard enough dealing with disease. It makes it so much harder when people think its your own fault. It’s so silly. It’s so completely ridiculous. People are so insensitive.

Even the new age shop I have visited makes the same assumption. The native American holistic healer says the reason he wasn’t able to heal me is because I am not letting go of some inner hurt. And that I don’t really believe he can heal me. The latter is probably true. It’s all so ridiculous. But I guess I shouldn’t have been in there in the first place. Maybe that’s also keeping me from some  miraculous healing. Hahaha.

 

 

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.