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

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I’m still amazed

I’m still amazed what a difference insurance makes. I just bought my months supply of prednisone and methotrexate. They used to run me about fifty dollars(which I didn’t always have).

It only costs me $2.10 now. 

I haven’t been sent any obnoxious-ulcer-inducing bills in months. Now that I’m receiving SSD I don’t have to sit and worry about how I’m going to have enough to eat and also see my rheumatologist. No more decisions of whether or not to pay for medicine or electricity.

I think the lack of stress is helping just as much as anything else.

I don’t have to call my dad or sister every month and ask for money. And then have them say they wish they could, but just couldn’t spare anything.

I am very very thankful for the change in my life lately.

I’m going to be 24 soon. I haven’t done a thing with my life since I was twenty. It’s very hard for me because I have always been an overachiever. I went from having a full time job, a part time job, and going to school full time to nothing.

I want to finish school so bad it hurts. But I also don’t want to push myself too hard too soon. My doctors say I just need to focus on my health at the moment.

I’m thinking that if I feel up to it, I may take a couple art class at my community college this summer. Just to get back into thing.

My posts always get off subject.

ANYways, Im amazed……

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.