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 ūüôā

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!

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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.

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.

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 ūüôā

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?