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

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Another Battle

My life has changed so drastically in the last few months. Sometimes I go an entire week without even thinking about this blog. And when I do, I never have time to update anyway.

I have found it both thrilling and challenging to adjust back into the “real world”. The last few years were all about the things I couldnt do. The steps I couldnt make. Both literally and figuratively. I was so wrapped up in my illness and what I was missing out on. For years, my heart ached when I thought of everything that was passing me by. 

And while I usually have a very upbeat attitude, Im not ashamed to admit there are many many times when I was just plain angry, and resentful. I’ve felt cheated and sometimes downright grief-stricken. My R.A. was so severe and so fast acting, that within just a year I had very little cartilage left in my knees, and things have continued on in the same way for the last four and a half years.

I realize that since I was first hit with R.A., I’ve treated every problem that has come my way as a type of battle while completely ignoring the war. I’ve  fought for medication, health insurance, and knee replacements. I viewed them all as an end all. Something that would save me, fix me, make me whole again.

I’ve found it very very difficult to face the fact that this is my life. It’s something I’m still struggling with. After four and a half years, it is something I still want to fight against. Dont get me wrong, I still love my life. I love who I am as a person. And I love the support I have around me. But my biggest struggle with R.A. has always been accepting my life as it is and not how I want it to be. That this problem is long-term and will be one struggle after another. That I have had major victories like getting health insurance, or new knees, but that in the end there will be another struggle.

Im coming to grips with this though. Looking forward to my next battle. Haha. I think I like that term. I think it deserves a capital letter. Battle. My next Battle will be for my hands. I have an appointment in two days to set up everything for my new Rituxin infusions.

If anyone has read my blog, you may know of my complete and absolute terror when it comes to needles. And how I almost didnt want surgery because of the I.V.! I agree. It’s completely ridiculous. But….just the way I am. So to agree to IV infusions, I really have to be losing my Battle. And unfortunately I am. R.A. already won my knees. I’ll be damned if it gets my fingers.

My fingers. I can’t even think about my fingers “going”. I find myself holding up my hands for daily inspections. I can already see slight deformities. Knuckles so swollen that the tips of my fingers never touch. So I need drastic help. My rheumatologist is even talking about joint therapy with Rituxin, humira, and methotrexate. At this moment, I’ll try anything that helps.

So that where I am at the moment. Still greatly improved after knee surgery, but fighting another Battle.

Dreams Deferred

Im going to have to drop my drawing class. Im so crushed. I feel like a part of me just died.

I just keep picturing myself when I was eight years old and drawing Disney characters. I wanted to be an animator when I grew up. And my parents used to tell me I could do anything I set my mind to. As long as I worked hard enough at it…….

I’ve been waiting four years to get back to classes.

But swollen joints, elbow contractures, and shaky hand are not conducive to achieving this particular dream of mine.

I was just so angry at the world today. I usually have a good outlook on life and my illness. But today I’m angry. Today I’m crushed. Today I am so very very tired of dealing with this illness. I cried a lot today.

I feel like I’ve been robbed.

________________________________________

A Dream Deffered:
Langston Hughes

What happens to a dream deferred?

Does it dry up
like a raisin in the sun?
Or fester like a sore–
And then run?
Does it stink like rotten meat?
Or crust and sugar over–
like a syrupy sweet?

Maybe it just sags
like a heavy load.

Or does it explode?

Cowboy Up

I had a follow up with my surgeon this  week.

So, we decided that the hip definitely needs to come out. He says it’s at the end of its life, and I agree. It’s also problematic in that it is keeping my new knee from getting straight.

The only thing is that now that Im finally back in school, I dont want to have to take a semester off. Christmas break isnt long enough to recover, so I want to try and hold off until I get out for the summer in May. Thats eight months though. It seems like an eternity.

The thought of it really scares me. Which is a bit odd since my knee replacements went so well. And have literally changed my life dramatically for the better. I guess it’s irrational and the secret pessimist in me, but it’s almost as if Im scared that theres no way it could go so well three times in a row. Haha. I know. Silly.

But life has been wonderful for me lately. I have to stop myself from overdoing it sometimes. I have to remind myself that I have other joints that arent acting the way I want just because I have new knees.

But my legs are still getting stronger and stronger. I can stand for so much longer. Before the surgery, 20 seconds would feel like torture. I can walk pretty far too. Before the surgery I couldnt get across the apartment without a break. I stood on my bed tonight to dust off a shelf. I havent been able to do something like that in years. So I’m still doing these tiny things that just overwhelm me sometimes.

As far as the other joints go, it looks like Humira is just not cutting it. Shoulders, elbows, wrist, and fingers are becoming very problematic for school. I have to do something if I want to continue in art courses.

So I’ve had a lot on my mind lately. I dont really have a plan yet. I guess I’m just going to try and cowboy up and deal with the hip issues for now and see how it goes.

Small setback

My R.A. is making my drawing class very difficult. While drawing, you need to use your whole arm. Not just your wrist. My professor keeps saying “Draw with your shoulder.” My shoulder wants to yell back “Leave me out of this!”

Even the thirty second drawings have been hard for me. I’m trying to grin and bear it. But when the three minute drawings come up, I want to throw down my charcoal, stomp my feet, and yell in frustration.

With my R.A., me and my doctors have always focused on my most painful joints. These are the weight bearing joints. So everything else has kind of been pushed aside. I cant imagine how my physical therapy sessions would go if I had to focus on every joint. It would take like 6 hours a day! 

It’s making me very nervous that my R.A. will ruin this for me. That will crush me.

This is so different from art classes I had pre R.A. I have made so much progress lately. But there’s still so much more I have go.

I asked my physical therapist for a list of exercises I can do at home. Maybe that will help some.

My new life

So many little things have been happening lately.

I can make it to the living room in time to answer the phone when it rings. I had gotten to the point where I never even bothered attempting it.

I’ve stopped watching and monitoring every drop of liquid I drink in fear of needing too many trips to the bathroom.

I went on a short shopping trip. No wheelchair, and no cane!

In fact, for the first time in about two years, I rarely leave the house with it.

I started school today, and besides my slightest limp, nobody gave me a second glance. Do you know how exciting that it?

I walked up a flight of stairs. Not easily, but I still did it.

My knees are actually beginning to look like knees. There’s a distinct knee there as opposed the the enormous swollen blob that has been there for years. I haven’t been able to see the shape of my knee since the very beginning of my illness.

I’ve been able to regularly visit my grandparents. Almost every week. I love my grandfather so much. He has such a special place in my heart. My mother loved him so much when she was alive. He was her hero. And he’s been pretty sick the last few years. I just haven’t been able to see as much of him as I’d have liked. But I do now.

Here’s a big one.

I finally finally got a scooter. I’ve wanted one for years, but have never been able to use it. I can now. I’ve been zipping around, practicing for the driving test for my motorcycle license. It’s so much fun. It feels amazing to drive off by myself on country back roads and just relax.

Here’s a bigger one.

I felt pretty today. Even with the extra weight. That’s never happened….

And the biggest thing of all, I’M BACK AT SCHOOL!

I went to my first two art classes today. I’m beyond excited. I’m thrilled. Beyond that.

Getting back to school is what I’ve wanted most for four and a half years. Meeting new people. Getting back into the real world. I’ve been in a cave like state for years now. I’m finally getting out again.

My health is still far from perfect. But these new knees have completely changed my life. It’s been four months since my first surgery, and I am still as amazed as that first day I woke up with a new knee. I still wake up everyday thankful just to be able to walk again pain free.

When I was twenty, before I became sick, I never stopped to think about things like that.

Such little things that everyone takes for granted. This post is one big list of things that seem small to some people. They’re huge to me. They’re not little. They are enormous obstacle and goals to me. Sometimes I couldn’t imagine that I would ever accomplish them.

I’m beginning to feel like the old me again. The pre R.A. me. Although, surprisingly enough considering the condition my body is still in, I still think it’s an improved version.

Now that’s saying something, isn’t it?

scooter

Why yes. That is my scooter. And you are correct in your assumption that it is inside my apartment 🙂

Back to school

I’ve been out of the loop due to a dodgy Internet card, but I’ve finally gotten a new one.

Things have improved alot since I last wrote. My hip pain has decreased. A mixture of physical therapy and drugs are finally giving me some relief.

I have been getting out alot lately. It still feels odd to be able to just get up and go when I want to. It used to be that I would go weeks without leaving the house. Now that only happens once or twice a week.

Im  feeling better lately. The R.A. is still active with my other joints at the moment, but it’s getting better than a few weeks ago. My blood test showed that all my markers were through the roof. Lame. It’s better now.

So…….Big news.

I signed up for classes this fall!!!

I’ve been waiting four years to get back to school. I’m unbelievable excited, but still a little scared out of my mind. I met with a woman in the human resources office who runs the Access program for students with disabilities. I just let her know about my concerns as far as the distance I could walk. All my classes will be in the same building which helps, but the parking is a huge issue. Its a tiny lot with only three handicap spaces. And that is one thing I remember from classes before. The parking is always insane. The next closet parking lot is about 200 yards away.

There isn’t  they can do about it. They cant reserve a spot for me or anything, but they were so nice and helpful. I’m going to go ahead and file paper work with them, so that if any problems do arise from mobility issues, they will be able to talk to the professor on my behalf. They were extremely nice. It just felt good to know they are there if I need them.

So I’m taking a painting, a drawing, and a jewelry and metalworking class. I haven’t had an art class since high school. It’s always been my favorite thing though. Then I will have an on-line human rights course, which I did not at all need, but sounded extremely interesting to me. I’m just slowly trying to ease myself back into academic life. It’s been four years after all. And I think my schedule will be easy to handle.

So, I’ll be starting on the 24th. I just really hope my hip holds up and that I can make it through the semester. I really really really want this to work out.