Reflection II

I have serious issues with sharing with people.

And sometimes I get angry and want to blame other people for that, but the truth is that I am the one who doesn’t feel comfortable sharing things.

I am the one who does not like appearing weak. I am the one who hates to cry in front of people, and I am the one who always puts on a happy face.

That’s why I find this blog so helpful. I’m able to say all the things Im thinking but would be too ashamed to say out loud. Even to my closest friends.

I can say things here and people know where I’m coming from. People understand and tell me they feel the same way.

I feel like I focus so much on the negative here. But this is where I can let those sorts of thoughts out. This is my one good outlet.

I have outlets for the good things in my life.

But I’m going to take a page from Cateepoo ( http://thelifeandadventuresofcatepoo.blogspot.com/) and lists some things that have made me happy lately. Her posts are always upbeat and are constantly inspiring me.

 

The sky turning pink before the sun sets

Wind blowing in my hair, and sprinkles of rain falling on my head

My dog being scared of thunder and snuggling up to me as we watched Mr. Smith goes to Washington

Teaching myself to knit. And being outrageously terrible at it. Lol.

Conversations with my father that last for hours and still leave us completely disagreeing with everything the other person said. It gives us an excuse to argue more:)

An old man driving with a little dog in his lap

A new pair of pink shoes I was given as a gift. Theyre just my style.

Netflix and getting a new amazing documentary in the mail.

Having a safe warm place to come home to each night. Because I know so many people are not so lucky.

Garish Christmas lights hanging on my bathroom ceiling year round.

A really hot and very bubbly bath

Hmm. Very nice. Makes me want to get my camera out again. 🙂

Physical Therapy Results

I finished my second round of physical therapy in six months. I made good progress. When lying down, and after she pushes on my legs enough, they can get within 15 degrees of straight.

When I’m sitting and extend my legs outwards, I can get within 25 degrees of straight.

But when Im standing, I’m still stuck at a forty two degree angle.

I know this sounds completely superficial. But what is the point of all this hard work and pain if I still look completely the same?!

All I want-ALL I’m asking for in this life is to have straight knees. I can deal with everything else. I can deal with the pain. I can deal with the limitations, I can be broke and struggle. All I want is straight knees. And two round of physical therapy have not gotten me one degree straighter while I’m standing.

I’m tired of being embarrassed of going in public. I’m tired of everyone I know avoiding even looking at me.

I was so embarrassed to even have my friends over on Christmas. Several of them haven’t seen me since I put on all the weight. They kept looking at me then looking away. Every time I go anywhere people stare at me when I walk.

I just kept telling myself that when I got insurance everything would get better.

And it is. I’m not ignoring all the progress I’ve made. And how much better I feel. And how much less pain I have. But I hate to say this-but Im going to because I want to be honest- but I would give up all the progress to just have straight knees. And maybe that makes me superficial, but I cant help the way I feel. And it’s easy for everyone else to say to me that it doesn’t matter as long as Im feeling better. Because it does matter to me.

I just dont want to look like this for the rest of my life.

People

Warning: Self indulgent post

Am I perpetually disappointed in people because I expect too much?

I don’t think thats the case, because I dont expect too much. I dont expect anything from anyone.

Am I perpetually disapointed because Im too critical? I know I am. But I usually keep my critical observations to myself.

It is very hard for me to rely on people. In fact, there is not a single person in my life that I can be one hundred percent completely open with.

I have a group of friends who are very intelligent and funny who are very fun to be around, but the slightest hint of actual emotions makes them very uncomfortable.

I have a couple friends who like to come over and get a pick me up. Who are very needy and just need someone to tell them that they are going to be ok, but could never return the favor. Or even notice that other people in this world have problems too.

I have a close friend who was basically raised by an older brother. She’s a great listener, and we can tell each other most things. She is the least judgmental person I know. But we dont have anything in common anymore. We have fundamentally different beliefs about religion, and life, etc. In fact, everything about her life is the opposite of what I want for mine. When she gets on a religious kick, she avoids me because according to her psycho church, Im a bad influence for making her question things too much. Even though Im the only one of her friends who hasnt ended up drunks, or on drugs, or worse. So our conversations can be great but dont seem to last too long.

I have someone who I thought was a close friend. We made plans to go to school in England together for a year. We made all the arrangements right before I became sick. He is there now and has been for two years. He came home for Christmas and I hadn’t seen him since last christmas. I was so excited. He was supposed to get here on the fifth and said he would call me when he got in. Well a few days passed and I didnt think anything about it. I figured he was busy with family and whatnot. Well a week went by and he still hadn’t called. Then my best friend M-who he has been in love with since god knows when- says that he called her on the fifth and came over to see her a few days later. He also called my brother and they hung out. He left today and never did come by. Im a little heartbroken. But I was far too stubborn to call him after I knew he was avoiding me. I got him a book that I was so excited to give him for Christmas. Guess Ill just keep it.

I have another friend who comes over when she thinks theres a high chance of seeing my little brother. You would think she would be the best person to talk to because she has been through so much. She had lukeimia when we were in high school. She made a full recovery after three years, and her joints were destroyed from the medications she used. So shes had knee replacements, etc. But mostly she just wants to talk about my brother and why he wont return her phone calls.

My mother’s sister has always been around. She is the least dependable person I know. Recently she borrowed my car for a week, and left me with so little gas that I ran out before I could get to a gas station. That is very typical behavior for her.

My father had to go through Dallas on his way back to Houston so I drove me and my brother up to meet him and my sister. He is so completely oblivious to how hurtful he is sometimes. He told us about how when he moved to Houston it was because he was running away. He said we were just too much for him to deal with. And that that is also why he married so soon after my mother died. Because he just couldn’t handle us four kids.

Usually I can just compartmentalize all these things that bother me so much, but every once in a while I just have to get it out. And thats why I am writing this rant. Because I wont get it out otherwise.

This and That

For one month my medication costs were just under $1600. With my new insurance, I only paid $6.25.

Enbrel is the biggest expense. It runs a little $1500 a month, but I now only pay $3.1o. It’s still hard to get used to.

Also, I’m almost out of visits from my home health physical therapist. My right knee went from a 31 degree angle to a 22. And my left leg went from a 29 to an 18. They don’t look any differently though……

I walked across my apartment 3 times in a row on the last visit. Also, my balance is getting much better. I stood up with my feet as close together as I could and was able to stand up about 25 seconds before I began tilting.

Its odd that lately my muscles have been much more sore than my joints! If any of you thought joint pain was harsh, get a deep tissue massage to knots in your calves and flexion contractures behind your knees. Ugh. Almost enough to make me scream out in pain. And sometimes she presses down really hard in one spot for about thirty second. She says it forces the muscle to relax.

I don’t care how much it hurts though. All I want right now is straight knees. I don’t care if she tortures me. I feel alot better though. Its just that I don’t look any differently.

Not to mention, I still have not managed to lose a single pound. Literally. Every single morning I weigh myself, and every single morning it says the same exact thing. I was beginning to think my scale was broken, but nope. It works perfectly ok.  I bet my knees would feel amazing if I lost all theexcess weight. But nothing is working! I ate only vegetables and fruits for three weeks and still didn’t lose anything.

I keep having these dreams where I’m running and bouncing around like everything is just fine and dandy. Oh man, to be able to run…..or even jump! Wouldn’t that be amazing. To just take off as fast as I can and run until I cant anymore? That would be beyond amazing.

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……

Things I can do now that I couldnt six months ago

Stand up long enough to make a sandwich

Sleep on my side a few hours a night.

Lay on my stomach

Carry my 15 lb dog across the apartment

Blow dry my hair easily

Walk to my car without a break

These are HUGE things to me. Im excited about adding bigger things to this list.

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.