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

Meds part 2

Hey guys,

Thanks for the feedback. I really really appreciate it!

So I’m actually looking for anyone else who is on all four of the following meds.

Rituxan, Humira, Methotrexate, and prednisone.

I really didn’t word the question right on my last post 🙂

I’ve been on a combination of humira(or Enbrel), methotrexate, and prednisone.

Im currently on Rituxan, Methotrexate, and Prednisone. And my inflammation markers are still very high, so Im about to add Humira to the mix. Apparently the combination is still very rare so I was hoping to find someone else who is on all four.

Or at least Rituxan and Humira. Since thats the combination I’m most concerned with.

Thanks!

Meds

Has anyone else had experience with a combination of the following drugs?

Rituxan

Humira

Methotrexate

and Prednisone as a treatment for their R.A.? I would really love to ask you a few things…….

Fill up

I’m in much better spirits after a great holiday with my family. I had a really good Christmas. One of the best in years. All of my sibling made it, which hasn’t happened in many a moon.

I’ve started taking Lyrica and am shocked by how well I’ve slept the past couple of nights. It’s a drastic difference. I’ve been taking Ambien to try and help but it just wasnt cutting it. I havent had such a solid nights sleep in a very long time.

I’m working on getting my Humira through a assistance program.

But I’m still stuck on the custom orthopedic insoles. I’ve tried several kinds off the shelf, and several months ago I bought an expensive pair of shoes but nothing has cut it. I really don’t know what to do about it.

My last post was just me at a very low point. I’m sure everyone reading this understands how difficult it is to always be fighting. Sometimes it just feels like the whole world is trying to bring you down. Insurance companies, pharmacies, and your own body. Sometimes I feel like I just can’t take another blow and I dont want to fight anymore. I get tired of struggling just to have enough to eat every month. Let alone come up with seven hundred dollars for something  to stop the pain.

But my happy tank is pretty full now after seeing my family. It’s a bit cheesy and the cynic in me usually balks at such sentimentality, but I enjoyed myself anyway.

I hope everyone else had a great holiday!

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.

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.

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!!!!

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?

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

Hallelujah

I can take showers now. Honest to God, standing up, fifteen minute long normal showers.

It’s been so long since I’ve been able to do that. I’m always on a shower seat or in a bath. I know its a very small thing, but it made me feel human again. It must be close to four years since it’s happened.

It really is the small things that mean the most.

I was so excited I texted everyone I knew. Im such a dork 🙂

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.

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?

New Knees for Lisa

I just got this link from Rheumatoid Arthritis Guy’s Blog

http://newkneesforlisa.blogspot.com/search?updated-max=2009-07-06T21%3A15%3A00-04%3A00&max-results=4

This is from Lisa’s Blog:

     After 12 years of living with rheumatoid arthritis, I need total knee replacements I can’t afford. So I decided  to throw myself at the mercy of the internet. Can the kindness of friends, friends of friends, and total strangers raise $7,600 and give me my life back?

Lisa has currently raised almost $3,400 towards her goal of $7,600.

________________

Let me say, I understand where she is coming from. I understand the enormous burden of medical bills. There have been many times when I couldnt even afford the bare minimum in medications. Or visits to the Rheumatologist. If it wasnt for me finally getting Medicare, I would still be in the same position. 

And now that I have so recently had two total knee replacements, and know the relief they will give her, I wish I could give her every penny she needs. And now only $4,200 stands in her way.