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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3 Responses

  1. I hope this makes a difference for you. You have been down a hard road and deserve a little time off. Keep your goals. Sometimes that is what saves us!

  2. Thanks for sharing your story, and stay strong! Your goal of getting new knees is way above and beyond the norm, and you accomplished that!

  3. You have done a great job creating a picture of what life with RA can be like: the diagnosis journey, the quest for a good doctor, the way nobody “gets it”…
    Im coming to believe that we must all work to help the world to “get it” so that people can get the help that they really need. You are doing your part, Dear. Keep it up! ~ Kelly
    P.S. Goals are healthy and so is your realism.Go girl!

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