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

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.

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.

The Next Knee

I had my follow up appointment with my surgeon. My knee is looking great. I’ve been getting around without the walker and now I’m back to my trusty cane.

I looked like a complete goob today but couldn’t make myself care less. I got the usual stares that seem to accompany me wherever I go, but I can’t even blame them this time. First of all, my gait is completely hilarious. Since I have one straight leg and one bent leg, I’m looking a bit like this:

pppppTo compensate for the height difference, I now have to stand on my tip toes on my right leg. And since my knee replacement was only two weeks ago, Im still a bit wobbly. I feel like a new born horse. When they’re all shaky and unsure of themselves.

In addition to my lovely physique, I had a decidedly unusual fashion delimma. After surgery they make you wear these super tight bright white stockings to prevent clots. I have to wear them literally all the time with the exception of showers. So this morning I realized that I couldn’t wear jeans wince the surgeon would want to examine my knees.

My wardrobe is very small at the moment because of the steroid weight I’ve gained. I don’t own a dress that fits at the moment, so my only option was a pair of green cargo-esque capri pants. Over my white stockings. With a pair of sparkly black slippers since my usual flip flops weren’t an option, and my feet have been too swollen for normal shoes.

It was pretty funny.

But I found out my second surgery wont be until June 1st. It was a bit disappointing. It’s going to make physical therapy an issue since I only get so many visits a year covered on my insurance. Not only that, but it will be an additional three weeks with no R.A. meds. Ugh. Ugh. Double Ugh.

But the longer I think about it, the more I think it will be for the best. My left leg should be stronger so it should make the recovery that much easier.

The reason they are delaying is because they want to make sure the left leg is completely healed because of the infection risk. My silly immune system would not be helpful. And I know what a big deal an infection can be. One of my closest friends had her knees replaced when she was nineteen. She had leukemia and all the medications and steroids destroyed her joints. When she had her knees replaced, one got infected. And it was not good. So even though I’m disappointed my surgery wont be next Monday, I can see why they’re waiting. If it wasn’t for Memorial Day, I could get in a week sooner. But what can you do?

Anyways, I’m pretty upbeat today, it felt so good to be out of the apartment. Everything is so green. Im missing so many lovely photo opportunities! At least it’s for a good reason.

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

Therapy once again. And again.

I have been super busy these past few weeks. I’m in the middle of my third and fourth physical therapy sessions.

I have been going to one facility in the town I live in, three times a week. And I’ve been doing aquatic therapy one or two times a week in a town about 35 minutes from home. It was the closest place with an indoor pool.

This time around we have been focusing on strengthening exercises.

Like the other times I’ve done physical therapy, its very beneficial on several levels. But my knees are still not a single degree straighter while standing.

And after nearly eight months of almost continuous dieting I’ve only lost 7 or 8 pounds. So at this rate it will only take another seven years to lose it all. Hahahahahah. Ridiculous.

Anyways when I showed up for my first session of aquatic therapy I didnt know what to expect. The brochures the doctors gave me looked nice and said it would be a one on one therapy session.

Well I walked into the building that day to find two pools. One was nearly empty. Just a little old lady and a very large man. On the other half of the building was an entire high school swimming team that consisted of about 30 very fit and in shape teenagers. Talk about humiliating. I had to sit on a bench and wait for the therapist to show up. He came in and asked me if I was ready. (While waiting I decided there was no way in hell I would ever swim there)

I told him that I didn’t think I wanted to do it anymore. And that I didn’t know that there would be so many people there. He just looked at me with a confused look on his face and asked me why that would matter…

Because….they’ll see me…..(duh)

He just looked confused again and asked why that would matter.

Is he really that unfamiliar with disabled people having……I dunno…insecurities? Apparently it was a completely foreign concept.

I felt stupid and let him show me where I could change. I sat in a stall crying for a good fifteen minutes. Then I finally emerged from the stall and looked in the mirror and started up all over again.

I’m sure I looked completely ridiculous when I finally emerged. Haha. It’s a wee bit funny looking back, but it was terrible at the time. I had to walk through the front lobby. I had wrapped a giant pink towel around me. And I was hobbling about with my cane and trying to carry my purse and bag of clothes, while trying to walk with my head down so no one would see my tear streaked face.

By the time I got back into the room with the pools, about a dozen more people were there. The life guards were all changing shifts and a bunch of kids had arrived.

And of course, like everytime I go anywhere people had to stop and stare at me struggling to get in the pool.

I could have just died of humiliation.

But I did it. And have done it several more times. I enjoy the actual therapy part.

I just wish I could see the difference. I might be more excited then.

I also had another doctors visit. I told my doctor about the trouble I’ve been having with sleeping. She prescribed me some muscle relaxers. Which only manage to get me extremely relaxed while staying very much awake. Haha.

Also, my inflammation markers are still high after nine months on Enbrel. Im not sure what the next step is.

I like my new physical therapist in my home town. He is this older man that seems to genuinely care. And he seems to actually know what he’s talking about. And the nurses are very sweet. What is it about nice nurses that make can make or break a doctors appointment? Its amazing what a kind word or a pat on the shoulder can do sometimes. A little compassion can go a long way. And I’ve met quite a few people in the health care world that could work on having a little.

Besides that, not much has changed. I’ve been out taking photos a couple times. We have been having a very unusual temperature spikes lately. Its the middle of winter and eighty degrees one day and thirty the next. That’s Texas though.

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.