Wednesday, July 21, 2010

Talked to paitent advocacy.

By nature I am not a confrontational person. Don't get me wrong I can be a total bitch when it is called for. In general confrontation ultimately feels like a lack of diplomacy. That said, this time I don't think I am the one lacking diplomacy. After my recent doctors appointment I have really struggled. Could I try harder? Am I doing enough? Is this just in my head? I just don't know anymore. I do try, I do the best I can, but my body just gives out. I got up the nerve to gather some information from reputable sources about both Fibromyalgia and Myasthenia Gravis. I then wrote a three page letter outlining our conversation and what specifically I felt about it that was inappropriate. I went down to patient advocacy but the person I needed to speak to was not available. I left my name and number. I came home and was getting Alynna's pool blown up so we could sit outside in the sun and she could play. I got a phone call from a PA rep and explained what had happened and how frustrated I was. After listening to my concerns she said that she would discuss it with her supervisor. I explained the package I had put together, including the research. I asked her if she would like to me to email my research and letter to her and she said that she really didn't need the research because this really wasn't about my medical problems. This was about what I felt he did that was inappropriate. She asked me what I would like to have happen, if I just wanted them to talk to him, if I wanted to file a formal complaint, if I wanted a call back or what. I told her that I really wasn't sure, that I wasn't trying to get him into trouble, that I just feel like he was extremely insensitive. I finally asked her if we could set up an appointment with me, a patient advocate, and him so we could discuss some of the things said that I felt were so problematic. Honestly just discussing the appointment gave me a headache and made my body start hurting worse. Stress kills me. I don't want to talk to this guy again, he really upset me and I know he will try to justify everything he said. He will say the reason he told me how much they have spent on testing was to illustrate that they have tried everything they could. Doesn't change the fact that it felt like he was trying to put some kind of price tag on my health. I am sure he will say the reason he suggested more anti-depressants is because I am at the point where I need Klonopin. That is for the anxiety associated with the escalation of my pain, which is still not under control. These are just a few examples of what I know I will be facing and yet I invited this. Am I an idiot to go through this again? I know I will have to defend my feelings which is one of the most difficult things to do. He is going to walk in there with his years of education and experience and I just know I am going to be reliving this over and over again. I have to discuss and defend all the things that upset me. Honestly, this entire experience has been almost as traumatic as the original appointment.
So I got off the phone, finished blowing up Alynna's pool and started filling it up. While I was waiting Mark came home. We discussed what had happened and I asked him what he thought. He was kind of ambivalent. When I asked him what he thought about it for the 8th time he finally turned to me and asked what response exactly I was expecting. I told him that I just needed someone to tell me that I was doing the right thing. He said that of course I was...with his back to me. I don't know how he really feels about it. Am I making a big deal out of nothing? Does he think I am wasting my time, or his? Of course, he finally said that he would have just filed the complaint and burned his house down. That he was just and arrogant asshole that thought he knew it all based on seeing me for an hour. I wish that made me feel more comfortable with my decision. Mark had to leave to go to PT and Alynna's pool was filled so I took her outside and let her play in the water while I sat in the sun. My neighbor came over with her girls and they all played for awhile while we visited. Alynna had a blast and it was nice to sit in the sun. We were getting ready to clean up and go inside to shower when Mark came home. We got everything drained and put away and honestly I was just exhausted. I came inside thinking Alynna would crash with me but I couldn't get her to lay down so I finally called Gavin in and asked him to watch her. I can't believe how much this whole thing has stressed me out. I slept for a few hours but it wasn't very restful. My body is hurting and I feel like crap. I am still waiting on fucking orders, which might take for fucking ever, I am confronting the only doctor that can perform the botox treatments, we are starting to miss my income, my husband has been oddly distant, and both my kids have had attitude problems. Fuck, I just want to crawl into bed and pull the covers over my head.

1 comment:

  1. I think you are doing the right thing. I wish i had the balls you do to tell them off and do something like this. I am proud of you carly for standing up for yourself and your health. no one else is going to ever really care for you, the way you care for yourself so remember that. and about your family, I know you hate how much this effects them, but they're family, so they need to just deal. your husband signed up for sickness and in health, and heres the sickness, it may not be when or how he expected it, but its here and it needs to be taken care of. and i know everyone is trying very hard, and that alone can cause stress, so dont worry, keep yourself calm, so you're not in more pain. im here for you <3