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.

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Things I want so bad it hurts

I want to be able to walk my dog.

I want to be able to work on my photography again.

I want to finish school.

I want to run. I want to run fast, and hard and until I cant breathe anymore.

I want to climb a tree.

I want to travel.

I want to fit into my pants.

I want to dance.

I want to be able to take care of myself.

I want independence.

I want to sleep through an entire night without feeling pain.

I want to be able to speak to my mother again.

I want to wake up and realize the last three years were just some terrible nightmare.

 

Im in a funk

Ive spent the past couple days painting an old dressing table my aunt gave me. I’ve been taking it slow. Just a little bit at a time. My brother helped by sanding it first and at the moment its still sitting on my porch half painted. It has this huge round mirror attached. Its pretty. I sort of hate it right now though.

I live in Texas so of course its oppressively hot already.  Which means, its tank top time. Which means that while Im sitting in front of this thing painting, I keep catching glances of myself in the mirror. Its the bright red that I keep catching out of the corner of my eye.

When you avoid mirrors and refuse to look at yourself when you undress, then self denial really can work.

These stretch marks aren’t going to go away though. They’re very deep. They are very red, and they are everywhere.  They stretch all the way across my arms, all the way to my elbows. Its the first time Ive seen them from straight on. Sometimes at night when I’m reading, and laying on my side, I can see them on the inside of my upper arm. I just pull my sleeve down more, and try to ignore it.

And its not just my arms. Its my legs. They’re all over my legs. They go as far down as my knees. Damnit! I asked and asked and asked to get off the stupid fucking pills! Damnit! ARG! I’m so angry right now. My stomach is covered. You’d think I just had a baby. My hips are disgusting. You can see where my skin was stretched too far.

I really thought I was doing well with all of this. I try not to care. I try not to be superficial. But I’m over 200 pounds now. And Ive never been over 135. And even if I lose the weight, Ill still have these marks all over my body.  Nobody wants to see that. I cant even look at it.

It took me years to become comfortable with my body. The whole time I was growing up I was always very self conscious. I was always really hard on myself. But I came to a point where I honestly became comfortable with myself, and actually came to like all the things about myself that I used to hate. My pale skin, and big butt. Freckles. I liked them. I liked the weight I was at.

And then all this shit. Even when my knees became permanently bent I was still optimistic. I still looked pretty good, right? Maybe I could meet someone who would look past that. I mean, eventually when Im well enough, and some had some insurance I’d be able to start physical therapy. Or eventually I’d be able to get knee replacements. Then people wouldn’t stare at me when I walked. I’d look normal again, and then maybe someone wouldn’t care about all my health issues if it wasn’t so blatantly obvious.

God, sometimes I just think….. I dont know. I just feel like I’ll be this way forever.

Yesterday, my little brother was sitting with me on the porch while I painted and we were chatting. He always cheers me up. Well, my little hooligan of a cousin came up with a couple of his friends. When they walked up onto the porch I heard one of them say “Ugh.” Now of course I have no idea what he was saying that for, but my brother had murder in his eye, and the little kid kept saying “I’m sorry man, I was just kidding. ” When I asked what they were talking about my brother just avoided my eye, and said nothing and changed the subject. My cousin asked him if he’d show his friends a few things on the guitar, and he told them to come tomorrow.  Now I have no reason to believe that the little 13 year old punk was talking about me, but thats where my mind immediately went. And I was sitting in front of this stupid giant mirror, and I could see why someone would say ugh to that. Poofy moon face. Stretch marks out for anyone to see.

I dont want to think about it anymore. Im going to go bury myself in a book, and try try try to get to sleep.  Insomnia is bad enough by itself. Having insomnia while in a funk is worse.

Not so new anymore

Ok, the swollen feet thing is getting annoying. It’s been happening too much lately. Last night they swelled up  when I was up cooking dinner. Even though I was on a stool. If I’m sitting at the computer too long they swell. I drove across down to the grocery store and they were too swollen to get out.

Ugh. Also, I’ve been getting delinquency notices from my doctors office. And calls, and more letters. I’m on a payment plan, and have been making payments, but the billing office keeps claiming they haven’t received anything in months. My doctors office has told them that I have. But I’m still getting harassed for $700. If I hadn’t been making payments for months, then my tab would be way higher than that. They keep threatening to turn it over to collection. Ha! They don’t know my credit is already way past repair. Whats another mark against me? I don’t care!

Which obviously isn’t true. But its easier to think that than worry. There’s nothing I can do right now. I just need to hang on. Just long enough to get some help. I still haven’t heard anything about my court date. It’s been a month. I hope its not much longer. I cant afford another doctors visit right now. Im already past due for my labs this month. But I dont have the $250.

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.

 

 

Well this is new…

So this is what swollen feet feel like.

Ive had swollen ankles. Ive had swollen knees. Ive had swollen ankles, toes, and fingers. But never before have I had an entire foot swell up. And I certainly have not had it happen to both.

Its pretty painful. I guess it was the walking yesterday. Though really I didn’t think it was all that much. It feels like my feet are about to pop. And I cant even see my ankles.

Also, my arms are extremely sore. I guess it was from hauling myself up of the ground. I had to do it with my arms only. My legs were useless. It feels like I’ve been weight lifting. Ugh.

On the bright side, my knees and tailbone seem to have made it through the incident ok.

Man, if this is whats going to happen when I get out, I may need to think this through a little more.

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.