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.


Now we wait

I dropped my medical records and X-rays off to another doctor. He wants to look them over to see if he even wants to bother seeing me.

If afraid he’s going to take one look at that file, see I’m 24, and say no.

I don’t like the feeling of having the course of my life and future in the hands of a stranger. Or anyone for that matter.

And apparently second opinions are tricky with my insurance.

What if he wont even see me? Or sees me and then says no. Will my insurance even pay for it if I manage to find someone else? I’ve had a knot in my stomach all day. Now I have to wait until they call me.

Oh, and in the medical records, the last doctor wrote that i showed signs of scoliosis?!

And now with Insurance

I had my first visit with my rheumatologist with insurance. My card came in the mail Saturday! I’m in such a good mood. I’m sure I looked like some sort of nut job. I was smiling the whole time. Everyone in the office was excited for me. My doctor had a list of things shes been waiting to do.

I finally had Xrays taken. Two of my neck. Two of my chest. ( I’m not sure what those were for) 3 for each hand. 2 more each knee. 2 for each hip. I couldn’t get into some of the positions though. My right hip wont bend outwards. And my knees wont straighten. The worst part was for the Xrays where I had to stand. The technician was so sweet though. She helped me stand. She held me up because I couldn’t stay balanced when they made me stand straight. I had to take a break after the second Xray. I was in an ungodly amount of pain from standing. But I got through it all. I wish I could have seen them though. I’m curious. The last Xrays I had were two and a half years ago. And the cartilage was almost gone then.

I also had tons of blood tests done. I don’t even know what all. There was something for thyroid. Something for vitamin b deficiency? Definitely something for calcium. And I had to pee in a cup for some odd reason. Ive never done that there. I should get the results soon. My doctor also wants me to see my endocrinologist about my thyroid. She said that may explain some of my fatigue.( Though she thinks it may be depression. Nope. Not it. ) I haven’t been to him in nearly three years. He found a goiter about 4 years ago. But the last time I saw him he said it had not changed sizes and that I should come back in a year or so. So I’ll call tomorrow about an appointment.

I have an order to start physical therapy too. She says its the most important. The order is for 3 times a week for six weeks. I have an appointment tomorrow for evaluation. Im kind of scared though. I mean, just standing makes me scream out in pain. How am I going to be able to handle therapy? I guess I’ll find out.

I also have an order for a bone Density screening. Because of my prolonged steroid use. The osteoporosis center is closed until after the 4th of August though.

 Oh, and I saw a dermatologist yesterday. He gave me a prescription and said it would go away completely. So that’s a relief. Just a rash that is in no way medication related. Woo!

Oh, and my rheummy said she was going to give Enbrelone more month and if it doesn’t do much better then we’re going to try Humira. If that dosn’t do much, then onto Orencia. Or some other medicine I’ve never even heard of. And now I’m going to taper off prednisone completely.

So I’ve had a very busy day. A fantastic day overall. But now I’m exhausted and sore and I’m going to try and go to sleep early. We’ll see if it works.  🙂

The waiting game

I am so good at the waiting game. I’ve been waiting for years….

Ok, I finally got my Medicaid card in the mail. Along with my Medicare prescription drug card. I have not however, received my Medicare card. Its all very confusing. I also cant seem to find any doctors offices that take Medicaid. Though some do take Medicare. But not without a card. Bleh.

My rheummy’s office doesn’t take either, but since I’m already a patient, they agreed to let me continue. I’m glad. I really like the one I’m seeing now. She replaced my beloved doctor a few months ago. I hated her at first. She nearly had me in tears the first meeting. Shes very up front and harsh sometimes. The more I’ve seen her, the more Ive realized that she doesn’t mean anything at all, and I’m probably just being too sensitive. She is obviously a very caring doctor. She goes above and beyond in my book.

Anyways, back to Medicare. Now I can call for a replacement card, but I can only get a recording. There is an option to have a replacement card sent to the address they have on file. But there’s no option to see what that address is. And that’s a huge problem for me in the first place. I’ve gotten dozens of letters lately. Some have made it to my address. Some they sent to a really old address. I still haven’t received those. Some they sent to my sisters address, and I don’t even know how they got that address. I’ve called the office, but cant seem to get anyone on the phone. I’ve left messages. They are never in a hurry to respond.

I talked to a physical therapist. She said Medicare is very picky about what they will and wont pay for. So they are going to evaluate me and see what they can do. But I still need a medicare card before they can see me. I have about five or six letters that mention my Medicare coverage. But none of them are the actual letter I need.

I called a dermatologist. They also need a card. At first they scheduled me for an appointment two months from now. Then I told them about the rash ( the drugs my rhemmy prescribed didn’t manage to do anything) and they rescheduled for first thing Monday. I need to get ahold of a card before then. Bleh.

But anyways, this is a temporary setback. I’m probably just rushing things. But my god, I’ve had health coverage for weeks! And I still havnt been to the doctor. Haha.

Also the girl that gives me my shots went on a vacation with no warning. So I’m really overdue on both my Enbrel and my methotrexate. So there are some tight tight tight knees right now.

Oh, but a change is gonna come 🙂

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.