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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Denied

I’m so bitter about health care right now. I’m so bitter that my worth as a human being and the amount of treatment available to me is based on the amount of paper in my wallet.

My feet are really bad because of the years my legs were messed up. Now I can’t stand more than a few minutes without a large of pain. Just like before the surgery.

They want seven hundred dollars for custom foot inserts. Nothing else has worked and my insurance wont cover it.

I started a new medicine called Rituxin. I havent seen any improvement. My doctor wants me to try a combination of Rituxin and Humira but my insurance wont cover it. What if my hands go like the rest of my body? They hurt so bad all the time. I find myself just staring at my swollen fingers. Terrified that they’re going to be irreparable like my knees and hips and elbows. Every day I just imagine the amount of cartilage that was destroyed that day.

On top of that, my right knee is already grinding down after only 6 months because of the position of my hips and knee. I will probably have to have it repaired. But my surgeon is in no hurry to do it. He wants to exhaust all other options. At this point I don’t see myself being able to go to school next semester.

Oh, and I was diagnosed with Fibromyalgia. She pressed several points on my body and they were so tender I yelped.  My body hurts all over to the touch.

I feel like I’m falling apart. I’m so frustrated right now. I’m so disgusted with this country’s health care system. How can anyone be proud to live in a country that lets a 20-year-old woman suffer from a disease with no medical treatment until she has suffered so much irreversible damage that she will feel the effects for the rest of her life? How can this still be happening?

I want to give up. I’m so tired. I’m so unbelievably tired of all of this. And I feel so powerless.

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.

Is it finally over?

I finished my post surgery physical therapy.

I’ve been doing physical therapy now for almost fourteen months. Almost continuously. So it feels good to be done for now. 

My right knee never did get much straighter though. It’s still about ten degrees from straight while I’m standing. It’s frustrating, but it looks like something I’m just going to have to deal with for now.  It’s still better than the forty degrees it was before the surgery!

I have an appointment with my surgeon in about three weeks. I’ll see then if he wants to do anything about it.

But until then, no more physical therapy!!!!

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 🙂

Ups and down

Its amazing how you can be on top of the world one week, and the next week, R.A. can bring you so far down.

The initial relief I felt from my meds have slowly stopped working and Im in the midst of a hard core flare. The last few of my joints that haven’t been affected have finally jumped on the R.A. bandwagon. Now that my shoulders and ankles are in the mix, the only unaffected joints are my new knees. Jaw, neck, shoulders, elbows, wrist, fingers, hips, ankles, and toes.

On top of that my recent Xrays show joint damage not only from Rheumatoid Arthritis, but from Osteoarthritis as well. I dont even know how it’s possible. Im only twenty four. How is this happening???

I feel, like once again, I let my  hopes up too high.

I have amazing new knees, and I’m still very grateful, but its like my white blood cells want to make it up by attacking my other joints even harder.

Im still so frustrated at the simplest things I cant do. I actually had to miss a grave side service yesterday. Now I’ve missed alot of things in the past couple years. Birthdays, graduations, dinners. But never a funeral. And so that is a whole new low for me.

Im desperately, desperately, trying to stay positive. But I feel like Im loosing the fight right now.

My knee still isnt straight. And my hip pain has made walking almost as painful as before. My rheumatologist gave me the name of a pain management specialist. Im so frustrated I just want to give up. I dont even want to try anymore. Why did I think everything would be solved after my new knees? I never thought everything else would fall apart. But of course. Of course.

There is still a chance that the meds will start working again. It’s only been two months. Im still doing my physical therapy at the clinic and here at home. Im not going to stop of course, but it’s hard to stay motivated right now.

I went out to eat with a friend a couple night ago. The retraunt is right off the highway so it was really loud. A very large man started yelling at us across the parking lot. I looked at my friend and said ” Is that crazy man yelling at us?”

As we got closer, he kept gesturing at me, and said “What happened? Whats wrong with you?”

I swear on my life this happened. And so I tell him and he calmly said “Oh, ok.” and climbed into his car and drove away.

Is this happening to anyone else?

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

2

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

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?