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!



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.

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.

How rude!

I decided to go to the local health and human services office yesterday to see if they could give me a temporary insurance card while I wait for the one from social security to make its way through the mail. I hate going in there. The people obviously hate their job and don’t want to be there.

So I signed in and the lady in the front made a copy of my driver’s license( it was taken when I was 18 and tiny) and said it would take about an hour. So I sat down to wait. A few minutes later another woman came in and picked up the paper and looked around the waiting room and I was the only one in there. She sat down. About 40 minutes later she held the sheet up and said ” This isn’t you, is it?” I said yes it was and I was waiting for a temporary card.

She just looked back and forth between the paper and said “What happened to you?”

I just sort of stared at her in shocked. Muttered out something about weight gain and being sick and then went and sat back down. I was so embarrassed. I don’t know if she knew how f-ing rude that was.  She said it all sickly sweet and pityingly. Bitch.

And after all that, they couldn’t even find me in the system. So I called S.S. They said I’ve been covered since the beginning of June. But I’m not in the system yet. That doesn’t even make sense. Bleh. I’m supposed to try again Wednesday.

It was a really crappy day. But when I got home and weighed myself I saw I’ve lost 4 pounds! Ahh! I actually lost weight! I haven’t lost weight in like a year. I dropped my prednisone from 5mg to 2.5 several days ago. I haven’t told my doc yet. But I’m actually losing.

The storm is finally passing…..

I hardly have words for such wonderful news. I’ve never cried out of relief before. This big black cloud I’ve had over my head for the last few years is finally going to go away.

I officially have health care coverage.

Lets just let that sink in……

I have health care coverage. I now have medicare and medicaid.

Can anyone understand my relief? The weight being lifted from my shoulders?

I’m going to be able to get medicine whenever I need it. I can start physical therapy.

I’m going to be able to have Xrays. I’m going to be able to have my swollen neck looked at. I can have cortisone shots in me other knee.

I can go to the dermatologist! I can have my hypothyroidism treated. I can go to the dentist! The eye doctor! I can have real blood work done.

I don’t have to beg my family for money every month. I don’t have to be a burden on everyone I know.

I cant believe that after over three years with this disease I will finally be able to be treated like I need to!

Now I just have to wait on my card. The social security administration sent it along with my official acceptance letter to a very old address. For no apparent reason. Hopefully it will still be forwarded to my sisters address.

I’m so excited. I AM SO FRICKIN EXCITED!

Life is going to be so very different for me soon.

Oh, thats just perfect.

I received a letter in the mail today dated May 27th 2008. It was from the Foundation who supplies me with Enbrel for free.

They just wanted to inform me that I have been dropped.

No explanation. I will have to call Monday.

Lack of Insurance II

I went to my doctors Wednesday. Its been a few days, but I think I have sufficiently recovered. In fact, I’m feeling pretty good.

My father had to come to town to do some work on our family home that is up for sale. It’s been on the market for almost a year. Apparently, we couldn’t have picked a worse time to sell. Ha. Anyways, his wife sent her credit card with him and said I could pay a hundred dollars on the doctors tab, and then my medicine. I’m raking up quite a tab for Dad and her too. When the house sales, I am supposed to get a small cut. My father owed all of us kids some money from when he used the money our aunt left us when she died. So, we’re just waiting for the house to sell. My step mom has been helping us all bit by bit though, and its coming out of our “house money”

I was also able to drive his truck, so that was another load off my back.

So anyways, normal appointment. She was ecstatic that I was able to lower down to 5 mg of prednisone. She asked me how the Enbrel was working, what hurt, how much etc. Then she asked if I wanted injections. I really should have said no. Even with a discount, they’re are still over $150. But I said yes. I had two. One in my right knee since it’s the worst, and one in my right hip for my bursitis. Left knee and hip would have to wait. So between the doctors fee, labs, and procedures, my bill for just that day will be $650-ish. Add that on top of my $700. Minus the $100 I put down that day.

I don’t care. I was feeling rebellious. And yay for ridiculously overpriced shots! I feel loads better. My right knee is my good knee now. I’ve never had a shot hurt so bad though. I actually cried on that one. I’ve gotten really good at holding that in check. I never cry in public. Oh man, not this time though. The bursitis shot wasn’t too bad. But it took a couple of days to stop hurting. It was very tender for awhile.

Oh, and my feet swelled to massive proportions. My doctor said there wasn’t really anything I could do but keep them elevated.

The biggest kicker all day, was the fact that the reason I was taken off Enbrel for five months was because of a rash that had nothing to do with the medication. Or any of my medication. My doctor isn’t a dermatologist, so she’s been going through a huge book trying to find what she thinks its from. (because I have an amazing doctor) Well, they found it. It looks very similar to the type of reactions people can get from the medicines I’m on. But apparently, its supposed to be relatively contained. And almost always clears up on its own within 3 months. Mine started 8 months ago. So they gave me a prescription that only cost $4, and after two days, its already going away.

I could have been on Enbrel the whole time! My doctor said it was just rotten luck. Yea, and the fact, that I couldn’t get to the dermatologist. My family just kept saying I could wait until I was on Medicaid. Even if that is several months away. Ha.

Anyways, I’m feeling much better now. Feet back to normal. Right knee feeling pretty good. Hip feels pretty good when I’m not sitting. I think the Enbrel is kicking in. I should get my blood results back soon. I’m curious to see how the inflammation markers look. So, yea, I’ll worry about the bill later. Scarlet O’Hara always says ” I wont think about that today. I’ll think about that tomorrow” I like that concept.