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?

Follow

Get every new post delivered to your Inbox.