Confusions

  Everybody has confusions in life...

Confusion for family:
I recently got back from Dale Hollow Lake where I visited my Gram, and two aunts (my mom was my driver). My family understands that with my AVN I have pain and it limits my mobility. What my family didn't understand is why I am going to a therapist on a regular basis. I had to explain to them it doesn't just affect me physically but also mentally. It has changed relationships with my friends. It has changed my outlook on what I will be able to do when I get older. Will I be able to have children and run after them? Will a man love me even though I am in constant pain and a wheelchair? To be honest why would you want to be around somebody like that all the time? They have limitations. It is like in my head I know that I am still me but so much as been taken. Not just the physical but the mental. Try going from working a job that never stops (teaching third grade) to no job besides making your body better. I know doesn't sound too bad does it? But remember making your body feel better costs money. You don't like to drive in the afternoon because your tired and in pain. You literally have to depend on others to drive you down the road or help you make yourself lunch. You cannot grocery shop on your own or run to the mall to get a new outfit for a party. Then the party, hope one of your besties is coming with you because wheelchairs, buffets, and drink cups do NOT mix. Just explaining this to my family who I love and who has always support me made me start to flinch, my anxiety of everything I can and cannot do has changed me forever.

Confusion with health insurance:
Obviously I use my health insurance a LOT. Well, somehow I got put on a list there and they will call me and ask me if I want to use this free wellness coach. The wellness coach will talk to you on the phone and help you loose weight. My head said, "O, that is nice." My mouth said, "I am doing weight watchers sorry I don't need this." Well my insurance company talked me into saying, "Well, if I need any extra help I will give the line a call." (I just wanted them to SHUT UP.) Also, on the phone I explained to them I am not a normal case. I am in a wheelchair and I am in constant pain. Apparently, by saying I would call them if I needed extra help meant I wanted to join, so in a couple of days I received a package. I was very excited, I love getting mail. My health insurance company sent me a pedometer to help me get started on my wellness kick. REALLY? HAHA. So my parents and I have decided that I will send it back with a letter stating, "I am waiting on the approval of my new wheelchair. I do not think I will be needing this. Thanks anyway." But I mean I get it. They are trying to get a person who is definitely using their health insurance back to being healthy or at least that is what I think the ploy is.

Confusions with Doctors:
The main thing with AVN that I have learned is you have to be your own advocate. My parents and I have argued with doctors, waved facts about AVN in their faces, and we have had to get new doctors (many times over).
So, I wrote in my last post about some of these VERY frustrating doctors!! I have been telling my parents for the last few months that I am not sure I trust Dr. Ankle. At first he really seemed like the first doctor to really care and have compassion for the situation I was in. He is the one that filled out the paperwork and helped me get on the Family Leave Act to try to recover some. More recently he just seems like he is talking out of his ass. The second to last time I saw him he told me that there was no way he AVN would be able to show up anywhere else besides where it was at the time. At that time it was only in my shoulders, ankles, and knees. And umm...where do I have it now? O, that is right in my hips. This past time he told me that there is a 90% recover rate for the ankles when it comes to AVN. Which, from my research and information from other doctors is TOTAL BULLSHIT! The ankles is one of the worst places to have AVN because it is so hard to get good blood supply down there. Dr. Ankle also told me that I might be able to recover from this by just using "protective weight bearing". Now I am going to quote the brochure that was sent to me from, The National Osteonecrosis Foundation sent me in the mail today. "Limiting weight bearing may also play a role in limiting progression while associated medical conditions are managed. However, protected weight bearing alone is never an adequate treatment for ON nor will it result in a cure of the condition, no matter how long it is maintained." So I am confused by what my doctor is telling me and what he has planned for me. I am extremely pissed off. O, and by the way I wonder...what he is going to say when I bring in my brochure on Tuesday when I see him. I wonder if he himself will be confused by what he said.
Hope all of you are having a better day than I am. I am in so much pain I want to scream.