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.
Saturday, July 16, 2011
Monday, July 4, 2011
"The Past Year in a Nut Shell"
Almost a year ago to the day I was given some medication that changed my life drastically...
After taking these medications for a couple of days I woke up with leg pain. A week later I was diagnosed with some tendon problems by Dr. A. The pain persisted and got much worse after I was diagnosed. Dr. A ordered an MRI and told me to see another doctor. About a week after that I was told there was something wrong with my talus bone in my left ankle. Dr. B ordered a whole body bone scan. When you have a whole body bone scan they inject you with radiation to help the scan see your bones. When I received the results I was told I had Avascular Necrosis (dying bones) in my ankles, knees, shoulders, and big toes. To be honest I thought it would all just go away eventually. I thought my legs would heal and I would continue with my life like nothing happened. How could I have been so wrong?
When I was diagnosed with AVN by Dr. B, he told me that he could not treat me anymore and sent me to Dr. C. Dr. C was a bit of an ass and told me he could not help me because I was not to the point of needing surgery and he sent me to Dr. D. The first time I met Dr. D I was impressed and I liked him for the most part. He ordered some more MRIs for me. The next time I saw him which was probably 3 to 4 months after taking the medication. I was in an area with lots of computers and doctors and students. Dr. D showed me the scans of my ankles and knees. He said I was lucky for where my AVN is was located in my knees. (As he said that I held in every piece of my body that wanted to scream, "LUCKY?" as sarcastically as I could.) He then proceeded to tell me that it probably would never leave my knees. He told me this just matter as fact like. Dr. D in those moments scared me more than anything. Then Dr. D said hey I cannot help you any further you should go see Dr. Ankle.
So, the following week I sat down in Dr. Ankle's room. My mother came with me since after the last Doctor's appointment I ended up crying for hours. Dr. Ankle made my mother's day by what he said but changed my mind on how I saw my condition. He said, "you do not need surgery yet and let's just wait and see what happens to your bones. Maybe it will get better on its own." When I got to the car I cried because I knew then I would have to leave my job. I would loose everything that I had worked so hard for. My mother say this as good news that I wouldn't have to have surgery right then. My mom didn't want me to have surgery. She doesn't like the idea of it. But now about 7 months later she has come to terms with the fact I will probably have to have surgery eventually I mean I do have AVN in most of my major joints.
After seeing Dr. Ankle a few times he told me I needed to get a doctor for my knees since he only treats ankles. I did just that I started seeing Dr. Knee. Dr. Knee told me pretty much up front that he had never seen AVN like this before. At this point I thought in my head "Why the hell am I here then?". He then went on to tell me that he agreed with Dr. Ankle to just continue with my wheelchair, and crutches and wait and see... Really wait and see? I have been waiting and seeing at this point for around 6 to 7 months.
I finally decided I wanted a second opinion. I did some research and I found a doctor who was listed on the osteonecrosis (another name for AVN) website. We will call him Dr. Too Smart. Dr. Too Smart said well yes you do have AVN in multiple joints. You should keep your weight off of it like you are doing with your crutches and wheelchair. Then he went on to say that if I didn't do something soon about my AVN I would probably be looking at my joints becoming disfigured and it being too far progressed for any type of treatment other than joint replacement. He then went on to tell my mother and I about a bunch of doctors up north and on the west coast that may be able to help me. Yes, we are looking into this. Also, while I was there he asked me if I had ever had an MRI of my hips done. I said no but I had a full body scan done and they had said my hips were fine. Dr. Too Smart told me that I needed to get an MRI of my hips because the Full Body Bone Scan doesn't show the hips very well.
About a month later my hips started to hurt really bad. I went and say my regular doctor, Dr. Time. Dr. Time always spends a lot of time in the room with me and makes me feel very comfortable with who she recommends for me to see. She recommended my pain doctor, ENT, and a physiotrist. The last one Dr. Idiot the physiotrist had no idea about AVN and he was suppose to see me for my hips. He sent me for an MRI and would you know it I had AVN in my hips the whole time I just didn't feel the pain of it right away.
So in a nut shell I have seen tons of doctors who have told me things I didn't want to hear. I didn't even tell you about some of the doctors I saw because to be honest it would have taken months to right this is I told you about everyone. I am just trying to get you guys to where I am now. I am not complaining about this, I just need to get it out. I need to release everything I have built up inside of me. I have all these thoughts about everything going on with me and now I am letting them all out.
I hope everyone was a wonderful day!
After taking these medications for a couple of days I woke up with leg pain. A week later I was diagnosed with some tendon problems by Dr. A. The pain persisted and got much worse after I was diagnosed. Dr. A ordered an MRI and told me to see another doctor. About a week after that I was told there was something wrong with my talus bone in my left ankle. Dr. B ordered a whole body bone scan. When you have a whole body bone scan they inject you with radiation to help the scan see your bones. When I received the results I was told I had Avascular Necrosis (dying bones) in my ankles, knees, shoulders, and big toes. To be honest I thought it would all just go away eventually. I thought my legs would heal and I would continue with my life like nothing happened. How could I have been so wrong?
When I was diagnosed with AVN by Dr. B, he told me that he could not treat me anymore and sent me to Dr. C. Dr. C was a bit of an ass and told me he could not help me because I was not to the point of needing surgery and he sent me to Dr. D. The first time I met Dr. D I was impressed and I liked him for the most part. He ordered some more MRIs for me. The next time I saw him which was probably 3 to 4 months after taking the medication. I was in an area with lots of computers and doctors and students. Dr. D showed me the scans of my ankles and knees. He said I was lucky for where my AVN is was located in my knees. (As he said that I held in every piece of my body that wanted to scream, "LUCKY?" as sarcastically as I could.) He then proceeded to tell me that it probably would never leave my knees. He told me this just matter as fact like. Dr. D in those moments scared me more than anything. Then Dr. D said hey I cannot help you any further you should go see Dr. Ankle.
So, the following week I sat down in Dr. Ankle's room. My mother came with me since after the last Doctor's appointment I ended up crying for hours. Dr. Ankle made my mother's day by what he said but changed my mind on how I saw my condition. He said, "you do not need surgery yet and let's just wait and see what happens to your bones. Maybe it will get better on its own." When I got to the car I cried because I knew then I would have to leave my job. I would loose everything that I had worked so hard for. My mother say this as good news that I wouldn't have to have surgery right then. My mom didn't want me to have surgery. She doesn't like the idea of it. But now about 7 months later she has come to terms with the fact I will probably have to have surgery eventually I mean I do have AVN in most of my major joints.
After seeing Dr. Ankle a few times he told me I needed to get a doctor for my knees since he only treats ankles. I did just that I started seeing Dr. Knee. Dr. Knee told me pretty much up front that he had never seen AVN like this before. At this point I thought in my head "Why the hell am I here then?". He then went on to tell me that he agreed with Dr. Ankle to just continue with my wheelchair, and crutches and wait and see... Really wait and see? I have been waiting and seeing at this point for around 6 to 7 months.
I finally decided I wanted a second opinion. I did some research and I found a doctor who was listed on the osteonecrosis (another name for AVN) website. We will call him Dr. Too Smart. Dr. Too Smart said well yes you do have AVN in multiple joints. You should keep your weight off of it like you are doing with your crutches and wheelchair. Then he went on to say that if I didn't do something soon about my AVN I would probably be looking at my joints becoming disfigured and it being too far progressed for any type of treatment other than joint replacement. He then went on to tell my mother and I about a bunch of doctors up north and on the west coast that may be able to help me. Yes, we are looking into this. Also, while I was there he asked me if I had ever had an MRI of my hips done. I said no but I had a full body scan done and they had said my hips were fine. Dr. Too Smart told me that I needed to get an MRI of my hips because the Full Body Bone Scan doesn't show the hips very well.
About a month later my hips started to hurt really bad. I went and say my regular doctor, Dr. Time. Dr. Time always spends a lot of time in the room with me and makes me feel very comfortable with who she recommends for me to see. She recommended my pain doctor, ENT, and a physiotrist. The last one Dr. Idiot the physiotrist had no idea about AVN and he was suppose to see me for my hips. He sent me for an MRI and would you know it I had AVN in my hips the whole time I just didn't feel the pain of it right away.
So in a nut shell I have seen tons of doctors who have told me things I didn't want to hear. I didn't even tell you about some of the doctors I saw because to be honest it would have taken months to right this is I told you about everyone. I am just trying to get you guys to where I am now. I am not complaining about this, I just need to get it out. I need to release everything I have built up inside of me. I have all these thoughts about everything going on with me and now I am letting them all out.
I hope everyone was a wonderful day!
Subscribe to:
Posts (Atom)