Another MS Blog 1/7/09 Authentic - long post

I am posting this email I sent to a friend below to hold myself to being authentic, good or bad. Something I am working on. Not that I am not authentic, well, hard to explain. I try to be the real me but sometimes I get caught up in the mask, the "I'm fine", that auto pilot. I don't want to live in the "I'm not so fine" part of life but not acknowledging it does not help either. To ignore it is to not deal with it and that is toxic. The closest I usually come to telling the truth about how bad things can get is to say "I'm doing the best I can with what I have to work with and some days that looks better than others." It is also something I try to hang on to when things are better, to keep myself from beating myself up when I am unable to make things appear to be better. Kind of a half empty, half full thing. I have been really trying to think positive, to send it out to the universe, law of attraction.....maybe I just don't know how that works.... Part of the desire to be "fine" no matter what is also a fake it until you make it kind of thing. Believe it and it will be true. Maybe that is the problem...... maybe I don't really believe it. hmmmm
Anyway, here's the email, no comments are necessary but are welcome.
START OF EMAIL I SENT TO A FRIEND
"Today has been another rough day. Since before Thanksgiving, I have been trying to reach one of my other doctors, the only other doctor that has been a part of my team for years, that is left besides my therapist. My insurance company will not recognize my therapist imput because she is "just" an LCSW and does not have an MD behind her name. Frustrating because she sees me more than any other thus she is more aware. The short version is that a friend called this same drs office to see about getting an appointment for herself. The first call she was told that he is not taking new patients for another 6 weeks. She called back to make an appointment and was told that she will have to call back at the end of the month because they "don't know what is going on until he gets back." She pushed for what that meant and was told that he is out of town. WTF! This is the first I've heard! My instinct is that he has left that practice (which happened before but he was not able to communicate with me because of legal reasons, i.e. contractually bound). His staff is rude and far from helpful so getting any answers out of them won't happen. More examples of why I think there is something major up but no need to go in to it all. The bottom line is that if he is no longer able to treat me, for whatever reason, another advocate for me is gone, leaving me with only the person that they say doesn't count. Even outside of the LTD crap, I NEED him to continue to be a part of my team, hell, he is only one of two left. The new primary care is just a little more than clueless because I am new and she doesn't really know me or my situation. She did take a very detailed history and made a lot of notes initially but only time will tell if that was for more than CYA for her files. The endocrinologist probably has no clue I am on LTD even though it is in my file and I've mentioned it more than once, and her focus is not really the big picture. She has given me signs of hope, in that she has indicated an understanding that I have a lot going on and that she intends on making a positive difference one way or the other. Does that mean she will advocate for me when it comes time for the insurance company, I don't know. Now I am faced (as therapist pointed out) with finding yet another sleep doctor. I've been through many as there was a time when this last dr did not take my insurance but I've always gone back to the original, even if that meant paying out of pocket to see him. The others were not interested in helping me. One did not even read my chart, almost prescribed something contraindicated (sp?) to another med I was taking, and flatly refused to even read my chart and the information, including labs and sleep study results, he had been given. I am so angry, hurt, and scared. I just want to say FUCK IT ALL. If I could ignore my health and just put my big girl panties on I would, would have long ago. Maybe I should just force myself to do so and deal with the consequences, which in my heart I know will not be good, not at all..... I spent so many years, from a very young age, with nobody, seriously and literally, in my corner. Nobody to advocate for me when I did not know how and when I was not able, like most kids should have in their life. It was quite the opposite, so for me to stand up for myself has been a serious challenge, after all I am not worth shit on the bottom of their shoes so why should I bother. It is only because I have had moments, though few and far between, that I have found some worth in myself that I have continued to fight. I am just SO tired. I don't know if I have any fight left in me. When I had my girls (cats) it was only because of them.....and I do mean only. Fighting to survive, that's what my whole life has been about literally and figuratively. I'm SO tired. When my mother was on her death bed, I remember so clearly her saying that and it wasn't the I need sleep/rest kind of tired. I understood even in that moment, at 17, exactly what she meant. Maybe that is why I seemed to be the only one that really grasped the severity of the situation? The rest of the family just did not want to get it even though I was trying to tell them, of course to get it would have meant with dealing outside of themselves and growing up. It was like I was the grown up and they were children. The option of being a kid was never really there for me. Oh my.... I am SO not ok.... and no, I don't know what I might ask you to do to help (other than letting me vent and listen while I sit on the pitty pot a bit). I do know that you are there, which does matter and I do appreciate more than you'll ever know. END OF COPIED EMAIL
Please understand, anybody reading this, that while I do struggle, a lot lately, I do not intend on just letting that be the case. I know that I must change the equation. I must take risks. I must push through whatever the fear. To not change the equation means to live like this and that is not ok. Right now I am physically, mentally, and emotionally exhausted - in large part because I have been trying so hard to put on the mask, or at least not admitting how bad it has gotten. In a strange way, it helps to let it out. I actually cried (not the sobbing I really need to do to purge) for the first time in a long time. I don't usually allow myself to do that, even in private.
Add in the whole impact of strong emotions to the Narcolepsy and it can be paralyzing but I am a human with good and bad thoughts and emotions. To not process those things is toxic so if that means staying close to home, making sure I am sitting, so that a catapletic attack will not injure myself or others then so be it.
Ok, there, I've pushed myself out of my comfort (well, not so comfortable but what I am used to) zone. I hope I have the courage to leave this one up as I do feel very vulnerable having shared all of this....
I've also said that my baggage has baggage and that baggage has carry on bags. Blogs like this is in part how I am learning to pack a little lighter so that I can enjoy the trip.
If you've made it this far, thanks for taking the time and letting me practice being authentic in real life. Hopefully, I'll be off of the pitty pot before the nasty butt ring becomes permanent. (wink)