I'm so sorry you're going through this with Blue Cross and this obviously ignorant doctor. It's terrible to be in so much pain and have to be your own advocate. I've not had this experience, and hope that I never do, and even more hope that you'll find the light at the end of the tunnel soon.
I know what you mean about the crying. This disease is so personal, and so totally misunderstood. I know how hard it is to face the ignorance, knowing that the person you're attempting to convince of your reality could never begin to know what you're dealing with. It's so likely that this jerk of a dr could deal with the level of pain you deal with everyday; it's maddening.
I was in a flare up for the last 3 weeks or so (had a nerve block today and am feeling so much better already), and yesterday had an argument with my daughter. Of course, I cried. Emotions run so high when the pain is bad. And of course, her first reaction? "Don't try to make me feel guilty by crying." Made me cry even harder; it just brought home how totally disconnected my family is from this disease and what it does to those of us who have it.
I'm praying for you. I know how hard it is to keep your head up and to keep trying to just live, let alone find a little happiness and comfort. Still, you have to try. Try to center yourself, spend some time with a cup of tea and something, anything, that makes you feel good in your heart and soul.
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Originally Posted by hopeful
I haven't been on in a while because I just have not been feeling real great both emotionally and physcially. I had my second appeal hearing with Blue Cross on Friday and the MD (director) of my appeal could not have been more of a pompouos ***! (sorry for the language).
He treated me like I did not know anything. He asked me why I was not in Dr. Schwartzman's ketamine research that was currently being done. I asked him if he read the research I had sent him previously for which I got a rude I read everything. I told him I thought the research I sent him was done and quoted in the literature. He said the literature he was reading was updated 10/09. Turns out at the end of the meeting he realized it was last updated in 4/09.
If I told you what I truly felt about the guy, I might not be able to post anymore. He actually tried to tell me I might be in the study and not know it. I'm a nurse and know that this is impossible but ask me why all I could do at the hearing was cry (It seems I do a lot of that lately, like right now). Who do these Dr's think they are. I know he is working for Blue Cross and it is his job to save them money but that is no way to treat people. Let along sick people (jerk). I am not holding out too much hope that my treatments will be reinstated. By the way I have a sister-in-law that is a doc and is going to help me send a complaint to the ethical committee of the AMA. (my first time ever doing anything like that)
I am so tired of being sick and tired. I try to take each day as it comes but lately I keep thinking how I'm going to live like this forever. The pain is so bad most days. Sorry to sound so depressing not my usual self. I am starting to see a therapist next Monday. I am hoping it helps me cope. Ok enough griping!
I saw Dr. Schwartzman on Monday. He changed my meds to Neurotin 300mg at bedtime and Elavil 25mg at bedtime. He told me to stop the Ultram I was taking (50 mg two times a day). He said it will end up tearing up my stomach. I was taking Nortriptyline 100 mg before with the Ultram and for the last two days the pain has been worse. I also have a feeling in my throat in chest that feels like I have been out in the cold breathing in cold air (sound familiar to anyone?) Does anyone know if all the increased symptoms may be my body adjusting to the change in meds? Any info would be appreciated!
I thank god there are people who I can write to who understand. Everyone around me really trys but unless I experienced RSD I could never have imagined what it does to a person life.
Hanging in there (like we have a choice!)
hopeful  not sticking true to my name today am I? |