I am not sure where this post is going to go but I need to get some things off my chest. I feel like I am going out of my mind in many ways. Overall, life has been pretty good and if it was never any worse than today I will definitely take it. Having said that, right now I feel like absolute crap!
I have mentioned before that I don’t have a lot of trust in the medical profession because of how much they have screwed me over the years (pardon the language.) I have had to tell doctors what to do while I was extremely sick in the hospital, I have had enormous mistakes made, I have had things brushed aside only to have been right all along (and then of course the situation was a lot worse when it was dealt with, and one huge instance it couldn’t be fixed) and a myriad of other situations that all occurred when I was very young.
I think that is the case for many people who suffer from IBD or any other chronic illness since they were young. You eventually learn who you can trust. I was very fortunate that I always had my parents and my surgeon who became my primary care doctor for ten years. I stopped allowing any doctor to put his/her hands on me when I was in the hospital – even for little things like the removal of my central line, because I had been burned so many times by others in the field. I became dependent on this doctor in a way for everything. He was my protector because I not only trusted that whatever he was doing to my body was correct, but he understood me. He knew my situation. He knew my personality. He knew my family. He understood what I could handle and he was a real human being who wouldn’t put me through medical procedures or keep me in the hospital unless it was absolutely necessary.
Everything I had to go through was utterly unbearable but as long as I had my parents and I knew that this doctor would be at the forefront of my care, I at least took some comfort in that.
Anyway, let’s fast forward to today. I need to make doctors’ appointments but I cannot for the life of me bring myself to do it. I made the calls I needed to and scheduled the appointments I absolutely had to a couple of months ago but that took me such a long time. And then after, I was proud of myself because I felt like I accomplished so much by doing that because the simple act of picking up the phone, speaking with a doctor and then setting foot in an office is excruciating for me. This must seem dramatic given that I know many of you are in the hospital and suffering tremendously with things that you don’t have the luxury of postponing but please know that I am not comparing my struggles right now to anyone elses.
I just feel really blah right now, for lack of better wording.
I can’t concentrate. Is it from a medication? Possibly. Could I speak with my doctor about it? I suppose. But what would he do? Given that he barely knows my complex medical history, my inability to concentrate could be for so many reasons. So I don’t really want to change the dose of the medicine I am on (and feel fairly comfortable with) because I hate feeling like I could potentially be “upsetting the balance” since like I said earlier, things for the most part are pretty good and I know all too well the havoc medications can play on your mind and body. So what is the point of talking to him given that he truly cannot advise me anymore than I can myself. I can try to ween myself off of it and see how I feel. I know exactly how to do that. And given that he would of course recommend some other medicine to be on if I am experiencing a (possible) side effect, and knowing that I am not open to putting anything else in my body given the ten years of trial and error I have already, I am kind of at a standstill.
My menstrual cycle has also been very off as it has been since I was diagnosed pretty much. But, I would like to be able to do something about it or understand it at least a little better. When I went to my doctor a few months ago, it was a fine appointment and we tried some things which didn’t help much. I got the feeling that this is how it is and we could speculate for reasons why it is like this, I could try other things she recommends but at the end of the day, it is the same thing all over again.
I am also so unbelievably exhausted that my whole body truly lacks any energy. So given that, all of these other things could definitely be caused by pure exhaustion. I feel a lot of internal pressure and I cannot shut my mind off. My eating schedule is off. The summer weather could be causing me to become more dehydrated and thus, impacting my body negatively.
I am sure from this post you will be wondering how I can say that overall things are going pretty well in my life. But they are.
I just would like to be able to rest and get some of these things that I mentioned and a few others straightened out. I can’t seem to allow myself to trust anyone but me when it comes to my body. I would rather figure these things out on my own than deal with the frustrations of explaining this to doctors who barely know me; especially when I am not even sure what some symptoms are stemming from in the first place so how could they? And why would I just medicate when it could be lifestyle issues? And if I go to a doctor, they will want to help which will usually involve medication alterations which are always a big deal to me.
I just feel frustrated about this. After talking with someone a few days ago, it made me realize that I need to be able to trust someone other than myself when it comes to my body. I just can’t seem to. I know my body best and whenever I waivered from that, to say bad things happened would be the understatement of this entire blog.