Absolutely Positively Fed Up

Just to inform you dear reader, this post is going to be nothing but a huge rant. This morning I called RX Crossroads pharmacy to get my Enbrel shot prescription refilled. After waiting on the phone for what seemed like forever, I finally got to speak to a representative. She told me she could not refill my prescription. So, she connected me to The Encourage Foundation who kindly pays for my prescription because I can not afford a thousand dollar shot every week. So I get on with this woman who explains to me that my application has been temporarily discontinued because they want me to apply for Medicaid and basically prove that I am denied coverage from them. This is the part that makes me FURIOUS!!!!!!!! They took away my coverage, and didn't notify me AT ALL! They "said" they sent me a letter in the mail informing me of the change in my application, but they DID NOT. I have NEVER received anything from this Encourage Foundation. I never even got anything when I was approved for a year of coverage when I applied this last November. I had to call them and ask if I was approved after waiting a month only to find out I had been approved two weeks prior to me calling. J checks the mail EVERYDAY and we are super organized. We keep everything that has to deal with my health in a folder. It just makes me so mad that they can approve me for a year and then take it away just like that. I mean I need that medication. I just don't understand why a "Foundation" who is supposed to be helping people like me, goes out of their way to make life a living hell.

On the other hand, I am very thankful for the opportunity that I have to get my shot paid for. I don't want to come off like I am not grateful because I am. I just hate it when you get on the phone with these people and they treat you like a liar. This whole experience with Medicaid, Disability, The Encourage Foundation, and the "Doctor" I saw for Disability, have really been heart breaking for me. In my experience, talking and dealing with these people, I have found to be treated like I'm a free loader, liar, and trying to get something for nothing. It really cuts me to the core because I am NOT one of those people. There are people out there that want to abuse the system, and are liars out to get anything for nothing. It really ruins things for people like me who really genuinely and desperately need help. I never thought I'd be someone who would need to beg. If I could go to work and hold a job like a normal person I would be so happy! I would give ANYTHING to be a normal functional person. There is not one little ounce of me that wants to be sick, and I don't think these organizations realize that. I am so sick of being treated like a common criminal. It is really eating me alive. I am really hurt, and it is hard to be constantly beaten down and analyzed at every turn. Oh how I wish I wasn't sick! I HATE jumping through ridiculous hoops!

RA Tip Tuesday

When you have an autoimmune disease like RA, you learn to adapt to new and easier ways of doing things. For each person these ways are a little different. Here are some things that have helped me:

1. The Pampered Chef Jar Opener
     This nice little tool was introduced to me by a family friend, and my goodness is it helpful! I use it to open every jar, and even the milk jug. It has these tiny little teeth on either side that can pretty much grab any kind of lid. The best part is its only $11.50! I can't live with out this one!

2. Office Max Medical Stool

       This stool is a little on the expensive side, but for me it has been money very well spent. It costs about $100, and J got it online from Office Max. I need both of my knees replaced, and can't walk at all. The doorways in my house are too narrow for the wheelchair to fit. So, J bought me this stool to scoot around the house with. Even if you can walk, this is super helpful, and can save anyone with RA some energy. Use it in the kitchen to rest while cooking, or in the laundry room to sit while folding laundry. This stool is made very well and sturdy. I know I will contunue to use it even after my surgeries!

The 5 Stages of Grief

I had to take a week off from posting. I've gone through every emotion a person could have in the last week. I found it kind of funny that I can't physically get on a roller coaster, but I cant seem to get off this emotional one. Do you know the 5 stages of grief? They are denial, anger, bargaining, depression, and acceptance. When I was first diagnosed, I knew I'd go through these stages, but I had no idea It would be a constant cycle. I never went through the stages only once. I have found that once I get to accept of the roll RA plays in my life, something else traumatic happens. I then get the joy of starting the whole cycle all over again.

 A few weeks ago, we got a letter in the mail from SSDisability. We have already jumped through every hoop. (Or so we thought) It stated that they wanted me to go see one of their doctors for a physical exam and blood work. I rolled my eyes, but I was fine with it. I don't have anything to hide. So, this last week was my appointment. On the way to the doctor I thought my heart was going to jump right out of my chest. No one could understand why I was so nervous. I didn't mind being examined, but this doctor's opinion on my health was going to make a huge impact on the decision of my case. It was hard to trust that he was going to report the truth. So, J and I got there and went into this big southwestern pink building. When we walked in, there was a small waiting room. The place was neat, but dusty. It smelled like yesterday's lunch. It was a pretty small office, and hard for J to maneuver my wheelchair around corners and hallways. The nurse called me back. She was nice enough, but was quick and short with us. First she checked my eyes. It was hard to understand her thick accent. I couldn't understand her questions. Then she wanted to check my blood pressure. She grabbed my arm and started twisting it so my palm would face up. I started to tear up since my RA wouldn't allow my arm to turn the way she wanted it to. She took my blood pressure 4 times, and commented on how high it was. (I wonder why. My heart was beating so quickly!) Then she asked about my work history. She wanted dates and names. I was still choking back tears. The whole thing seemed like an interrogation. She had us wait until the doctor was ready to call us into the exam room. As we were waiting, J and I had a chance to observe our surroundings. The room we were in had furniture circled and lined up against all 4 walls. There were stacks of green SSD papers all over the room. It was dusty, and looked and smelled like a thrift store. Every piece of furniture (even the medical equipment) looked like it came from a garbage dump. I'm all for trash to treasure, but I find it hard to trust a doctor who doesn't take pride in his office. I would expect a doctor's office to be clean and sanitary. I started noticing the diplomas on the wall that belonged to this doctor. My fast beating heart sunk into my stomach. Under this man's name it said "Medical Examiner" on all of the diplomas. I took a second look at his name. I noticed there was no "M.D". Then I found out that the guy wasn't a doctor. He was just someone hired to examine me, and determine whether or not I was disabled. Now, I am not trying to be cruel, and say he wasn't smart or qualified to do his job. However, autoimmune diseases are tricky. Even a specialist like a Rheumatologist can sometimes be stumped. How was this man going to make an educated decision if he wasn't familiar with my disease? So, the "doctor" called us in. He started off by arrogantly asking me in a very strong accent that I could hardly understand,"So, what is your problem?". With tears in my eyes I started telling him about my RA, what joints hurt, what I can and can not do etc. Then he asked me to move my legs this way and that way. Afterwards he moved on to my arms, neck, feet, hands, etc. the whole time acting like he was trying to catch me in a lie. He looked at my knee and hand X-rays as well. He tossed a dirty cut up piece of fabric with buttons on the exam table, and asked me to button it. It was difficult for me, but I was able to button one of the buttons before he ripped it out of my hands, and tossed a old white baby shoe on the table. "Tie it.", he said. I couldn't choke back the tears. One tear fell down my cheek though he hardly noticed. I took the shoe, and struggled a minute, but I managed to tie a very loose bow. Next he put an empty jar of mayonnaise on the table. "Open it.",he said as he was writing on his little worksheet. That's when I lost it a bit. I looked at that jar knowing I would not be able to open it. At home I have a tool that helps me with things like that. Tears ran down my face as I struggled to turn the lid. It hurt so bad, and I couldn't do it. So, he took it away, and didn't say a word or look at me at all as he wrote notes. Next he looked up and asked,"Can I get you to get up on the exam table?" I was SHOCKED. After looking at those X-rays, any doctor would know I would not be climbing up on anything. So, I thought to myself... Okay Guy, you want to see me climb up there? I'll let you see what I hide from everyone. I asked J to help me stand up. We usually count to three when I stand up. It helps me prepare for the pain. "One,... Two,... THREE!" we exclaimed together. Up I went, and was half standing. I immediately felt the familiar, excruciating, and grinding pain in my knees. I let out the loudest, most heart wrenching shout of pain I think he had ever heard. I started to cry uncontrollably. This was NOT a show. I saw in his eyes that he knew I was for real. He simply and quietly said, "Sit her down." I continued to sob for another minute as the pain slowly faded to a pulsing heartbeat in my knees. After that I started crying for a whole other reason. I had been completely humiliated. In that very moment, I finally realized how desperate I was for someone...anyone's help. I was disabled, broken, and it was the first time in a long time I saw myself that way. All in one single little minute, I found myself at the beginning of my "grief cycle". The whole week I've been going through all of the emotions again. Denial, anger, bargaining, depression... And Im not quite back to...ACCEPTANCE. (but I'm working on it!)