Im moving on

Hey everyone.

It’s been four months since my last post and just about that long since I’ve had time to read anyone elses.

I started this blog in March 2008. Which was probably the lowest point in my life.

I’m now five years into this disease and I feel like I have experienced more ups and downs than some people experience in a lifetime. This blog was the single greatest source of comfort for me in a time that I had nothing else. Connecting with everyone else in the R.A. community has been a truly life changing experience. And, more than anything else, I give it credit for saving my sanity and pulling me out of a deep hole of despair.

But I feel like it’s time to move on. It’s been one year since my first knee replacement, 11 months since my second, and three weeks since my hip replacement, and I am pleased to announce that I feel half way human again. I’m still fighting the war, but these key battles have changed my life completely. I started back at school in the fall, and have completed two full time semesters with a 4.0 average. I’ve won awards for my art work, and I am all set to transfer to the University this fall. I’ve moved into a new apartment, and finally feel like I have my life back on track.

I still struggle daily with my R.A. but I have improved drastically. It has been a long hard road to recovery after three and a half years without insurance. I still feel angry about how our system failed me, but I’m feeling less and less like a victim with each new step.

I’m going to take a break, and someday I may be back. But for now, I dont need this blog. I’m making it out there on my own and it feels great.

If anyone with R.A. ever stumbles on this blog, I want them to know that everything will be ok. I promise.

And I am still always available if anyone needs me or just needs someone to listen. raandme at gmail.com

Where did the pain go?

My knee is healing so quickly! It was so stubborn at first so I thought it was going to be more difficult than the right knee. But some of the exercises I wasn’t even able to do with my right knee until week five, I’ve been able to do with the left within the first three.

And it’s almost straight!¬†Just a few more degrees. I had my stitches removed Monday. It wasnt quite as pretty as my right incision, but Im not complaining.

In fact, I think it’s time to post before and after pics. I’m hesitant, because my legs aren’t the prettiest right now. Or then. But I’m excited so here it goes.

Before

DSC01245

After

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You can see the right leg poking out just a bit, but it’s almost there ūüôā

Can you understand how happy I am? I had to walk around (and not very well!) with those bent knees for years.

I wrote a post once about how sometimes I used to wake up and for a split second before I was fully awake I forgot and I would move to hop out of bed and was surprised that my body was in so much pain.

It’s the opposite with my knees now. Every time I stand, I’m still expecting that excruciating pain I used to feel. And it’s just not there. And it still surprises me. The pain from the surgery is starting to wear off and my knees almost don’t hurt at all! Four years of unbearable pain. Pain that was so bad sometimes all I could manage in a whole day was making a trip to the bathroom.

Two summers ago I was staying with my best friends parents. My best friend came home from college for her birthday and was so excited to spend the day with me. She had all sorts of plans for shopping and movies, and dinner. I woke up early and shuffled so very very very slowly and painfully to the bathroom. Then I sat down in the vanity chair and tried to recover. Everyone woke up an hour later and I was still sitting there. They went out to eat and I said I would try to make shopping latter. When they came back I had managed to walk the ten or so steps to the dinning room table. I sat to recover. I told them I wasn’t going to make the shopping. But I’d try to make the movie. Three hours latter they came back and I had made it to the kitchen eat in counter. I missed the movie. I felt so terrible that I missed her birthday. And then by night time I had finally made it back to bed. I literally sat¬† all day. And I’ve had so many many many¬†days like this.

Days before the insurance, and medication. Before the steroids and Enbrel. Before the physical therapy and the surgeries. I know what R.A. is at it’s worst and it is horrific. I wouldn’t wish it on my worst enemy. And it’s not just pain that it brings. It’s embarrassment and shame, self pity, frustration, anger and disappointment and a whole lot more.

But do you know how lucky we all are who have this disease now? Can you imagine what it was like to have R.A.  even a few decades ago? Treatment plans are so drastically different. We have so many different and more powerful medicines available. I think about that sometimes. If I had been born in my grandmothers time, would my life have been nothing but those kinds of days?

Reflections IV

So I have this voice in the back of my mind whispering that the worst is almost over.

But if four years of battling rheumatoid arthritis has taught me anything it’s that I shouldn’t let my hopes get too high too quickly. Isn’t that a terrible way to view the world? I know it is. But it’s just more practical.

I’m generally an optimistic person, but four years of perpetual disappointments can change anyones point of view.

Since all of this mess has started I’ve always had these goals. Like I would be ok as soon as this or that happened.

When I was twenty and my symptoms started I was working my way through college and had no health insurance. I was just so sure that I would be ok once I paid for all the blood work and got on the right meds. Looking back, it was incredibly naive of me. I had never really been sick before. I didn’t really have any experience with inept doctors. I had never had to deal with costly medications or blood tests. Oddly enough, when I was first diagnosed I was still wildly optimistic that the whole thing was just a small inconvenience. Something that I could easily control and manage.

When it became painfully obvious that my small savings account wouldn’t make it past a few visits, I looked for programs that could help. Or insurance I could afford. I have a file full of denial letters. Full of ugly words like pre existing condition. Government letters full of excuses like over eighteen, or too young, or non immigrant, not pregnant, education level too high. Just silly silly things.

I learned far too quickly that all doctors were not made equal. But most of all, that the only thing that mattered was the amount of money in my wallet. Sympathetic and helpful if there was money. Cold and rude when there wasn’t.

I knew I needed to see a specialist. I needed to get to a rheumatologist. From what I read online, I knew I wasn’t getting the right treatment from my family doctor in my small town. It was my new goal. I just knew that if I could make it to the specialist, I would be back on track.

But specialist cost about three times the rate as my family doctor. It took months, but I eventually made it. I knew I would be ok! In fact, on my first appointment, the nurse told be the doctor would have me running within months. I would have my life back.

A few months went my. The initial medication wasn’t cutting it at all. I had an aggressive case and it hit me hard and very quickly. Within a year I lost almost all the cartilage in my knees. Medications were so expensive. So was the doctors visits and tests. I lost everything. Car payment or medication that might take the pain away? It wasn’t even a real choice. Rent? Or something that will have me walking again? I lost my waitressing job. I thought it would be temporary.

So getting to the specialist wasnt a magic cure all. It didnt get me anywhere. What I really needed was the stronger medication. Enbrel was being called a miracle drug. Enbrel would save me. If I just got on Enbrel. But Enbrel cost thousands of dollars a month. I eventually was able to get on a program that covered the cost, but my this time, almost three years of my life had been wasted.

When Enbrel didn’t save me, I was more focused on winning my appeal with Social Security Disability. The whole process took nearly three years. If I would be accepted, then I would finally have health insurance. I would get real care and not the bare minimum I had had the past three years. Health insurance would solve everything. I would finally get my life back. Back to school! Back to work. But after so long, insurance alone didn’t help.

My knees were already bent and deformed. I could finally afford physical therapy but it was too late. There was no fixing me. The only thing keeping me out of a deep dark depression has been the fact that I have always had these goals. These stepping stones. Lately my goal has been new knees.

And it’s happening. And so I have this voice in the back of my head saying “The worst is over. You’ll get your life back”

But honestly, I’m terrified it will be like everything else.

I’m feeling better than I have in years. But it’s hard to let myself get too overly optimistic. That’s one of the biggest things R.A. has stolen from me.

But I really really think I’m going to be ok now. I know I still have a hard road. I know this. I know my R.A. is still something I will have to deal with. But without my knees being so bad, I think it’s something I can handle. I think I’m going to be ok….

 

P.s. If anyone is curious, I have a picture of my knee without the bandage on. It’s quite disgusting, so if you have a weak stomach, dont click. Lol.

http://i69.photobucket.com/albums/i73/ashleynicole_999/londonjordan915.jpg

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.

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.

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.

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.