Another attempt from the Neurologist

I saw my neurologist again yesterday morning. We discontinued the Fentanyl and he prescribed me some Lidoderm patches. I asked many questions and told him that I was sick of being on these high dose medicines that don't help. My husband asked him about something like Percocet again for break through pain. He put a note in my file and said if the patches didn't work, to call and let them know and they would do a prescription. I came home and put them on immediately and, OF COURSE, no relief. No one ounce of numbness. I have been still trying and not a difference. I called this morning and left a message for the assistant.

Before I left the appointment, he told me that I seem to be doing better. I responded by telling him that I have just given up. Of course he told me that wasn't good. I am just at the point right now where I need a break from fighting tooth and nail, every second of every day with this pain. I just need a break. If I can get to the point where if I can live in a tolerable state and do what I need to, that's where I want to be. This all affects everything in my life and quite frankly, I'm over it. I am constantly thinking about how this is affecting my family and those around me. It breaks my heart that they have to worry. I have been the person that worries about everyone else and how things will affect them for so long that I can't help but still be in that place. I even hate worrying that the Army is going to be affected by me and my health. I know that there are plenty of people who can fill in.

I know I have said this many times, but I am just sick of everything associated with my health. No one asks for these things to happen, they just happen. You hear that everything happens for a reason, but I do not believe people in pain don't deserve it.

How?

I sit and wonder how things can change so much and get so bad in less than a year? How do you go from having so much hope, getting a diagnosis, having a life altering surgery that you pray is going to help, to feeling like you can't even get out of bed? I'm sick of just being my illness. I am sick of these doctors not knowing much about what I have or not wanting to treat anything but that illness. What about all of the other conditions I have that are causing me so much pain? I know this is my life, and I accept that, but at what point do you give up fighting and fighting and fighting to try to get them to understand and actually do something that truly helps or send you to the doctors you really need to see? I have given up having a better life than what I have right now, but how many doctors appointments or hospital stays does it take before you just say this is it and try to ignore it the best you can?

In less than a year, my life has become something I don't even recognize. I don't even remember at this point what it feels like to feel good. It's not fair, and I know that anyone who is fighting any condition feels the same way. I am fed up with going to doctor after doctor. I hate that no one seems to want to really listen to what I feel inside my body. They aren't the ones living it, I AM. I am the only one who knows how I feel. I am the only one who feels that something is not right, but how do you get them to listen. I was so hopeful. In the beginning, I was actually excited to have brain surgery. I truly believed that it was going to be what I needed. Boy was I wrong.

My insurance could care less about what I am facing. You would think that they would just send me where I need to go instead of wasting money on this doctor and that doctor, here try this medicine, no, let's try this one now. Guess what...YOU ARE IDIOTS!!! Why should it be my job to have to explain to medical professionals what I have? Umm, aren't you the ones who spent all that money and time to become a doctor!?! I'm not going to be all poor me. I am just at the fork in the road where I have to chose between if I want to continue spending all my time at the doctors or suck it up and try to not let anyone know that I am hurting. I have at least 4 conditions and mainly 1 is being "treated". They aren't doing a very good job at it either. I know that what I have is not something that these doctors run into every day, but do some homework. Why is it so difficult to try to figure out what you could do to help me and others like me? I just don't get it. I thought you became a doctor and took an oath to help people.

I hate that I am 29 years old and know that I could quite possibly feel like this for the rest of my life. Sure I have my times where I wonder why I couldn't have been one of the lucky ones. I hate that I have a wheel chair and walker just incase I have another episode of not being able to walk. I hate feeling like I am missing out on my son and family. To hear your son tell you regularly, "When you feel better, you can pick me up again. When you feel better, you can do this or that." In my opinion, it's more unfair to them than it is me.

A Little Off Subject.

I have been at the point lately where I am just so stressed and frustrated. I am so sick of all these conditions. Medicine changes all the time, not dealing with my other issues if it isn't the Chiari, doctors not wanting to do anything or test for anything else, etc. I'm so stressed and that keeps my mind going constantly and then it wanders to other issues in my life that I really don't want to deal with. Things that I can't do or have. It seems like I was in a world where I was working towards things that I wanted to being stuck in a life like groundhog day. I get to the point where I feel as though I will never have the good things I want. The things that mean so much to me.

How do I deal with this every single day? How do I face that I may never have any of the things that are so important to me? I am lucky to have my support system and very lucky that I have my husband and son. I feel as though my life is over in a sense. I am fighting the best I can, but when you can't get anywhere with trying to feel better and be "normal", how long before you just throw in the towel and say this is my life? I am trying to focus on helping those like me and raise awareness but some days it's hard.

I just want my old life back. I want to be in less pain and be happy. My body is fighting me so hard on that. The outside stressors affect how I physically feel and I'm sick of it. I know that I need to figure out what to do to not let some things bother me so much, but with all that is going on, even that is hard. I just want to scream. I want to be able to just get rid of the constant mind rushing stress. I've given up on so many doctors, hopes of feeling better soon, hopes of getting the treatment I truly need.

I try my hardest to not let it be seen how much I am bothered, how much I am stressed, or how much I hate that all the things I want for my life are on hold for who knows how long. I am not playing why me, all I want is to figure out how to let all of it go. I accept that I have a lot of health issues but giving up all that I want, I can't figure that out.