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.

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 🙂

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?

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

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.

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.