The time has come that I address my anger. I’m angry anyone could tell you that, but do any of you know why? A huge part of my anger comes from simply grieving. Ya know the stages of grief when you lose someone close? Denial, Anger,Barganing, Depression, and acceptance. I’ve been through those so many times when  someone close to me has died, I know them like the back of my hand. Grief doesn’t always end at acceptance I’ve learned. My Mom died when I was 12. It wasn’t like an illness we knew about, I didn’t get to say goodbye, she was talking on the phone with me making plans for SuperBowl weekend one night the next morning she was gone. That was 16 years ago, I have worked over the stages plenty. I have accepted her death but I still catch myself in every single one of those stages from time to time. I get so angry that I didn’t have my Mom at so many times in my life when I needed her. I get angry at myself for not cherishing the time, even though I was a kid and pre teen that had no idea how short life was at that time.  Obviously this leads to depression funny thing is I don’t find myself in this stage often. I’m a denial kinda gal. I don’t deny she is dead just kinda push the whole thing away and forget about it. You don’t need to tell me this is not the best way to deal with things but its the way I am. I’ve lost quite a few other people very close to me as well, like I said I know the stages like the back of my hand. So when I read recently that its okay to grieve for your former self something just clicked.

Everything I have been feeling just all of a sudden felt so totally normal. All the times I went to different doctors cause there just had to be something else wrong with me that was treatable. My absolute refusal to use my wheelchair anymore. Denial. I don’t need to give examples of Anger, but if you need one perhaps my homicidal tendencies towards jogging moms would be one? Oh I Bargain doesn’t everyone at some point? And Depression, well like Dr. Jerry always tells me “If you weren’t a little bit depressed going through this, I would be really worried” Some days its worse than others, but some days my Chiari is worse than others so it’s not something I or my doctors are worried about at this moment. (just in case any of you were concerned out there) Now the one I struggle with these days is Acceptance. Some days I think I have accepted my illness, but remember this grief thing doesn’t end with Acceptance. It just keeps getting you over and over. Pulling you in. It’s hard to master. Knowing that I am grieving though helps me understand why I feel the way I do these days. It makes it easier to let my loved ones know that it’s not you I’m mad at, I’m just grieving. I’m Angry at the world. Why did this happen to me? Why cant I be one of those people with Chiari that gets better after surgery? It’s not fair. I just want to be a good mom and be able to play with my kids again.

If you are an observant person or simply paid attention you may recall that I said “Part” of my anger was from the grief. The other reasons for my anger are a lot more simple. The other day some internet tough guy (as they are called) called me some awful names. Many of you probably saw this attack, I did nothing to warrant it but it happened just the same. I’ve met this guy personally, heck I’ve even given him extra tickets to games before. He is one of those friends of friends I’ve done anything I could for, cause they needed. The only part of the vile he typed that even got to me was when he called me Psychosomatic. This is the second time I’ve been called Psychosomatic since I have started this blog. Both times via the internet and neither time by someone who’s opinion matters to me one bit, but it still makes me irate. Seriously? There are people that think I’m making this stuff up? Are there those of you that opinions would matter to me that think this? That I would willingly go through brain surgery for nothing? Do you have doubts that it really isn’t as bad as I claim? Do you think I’m being a drama queen? This kind of close minded, un empathetic way of thinking makes me angry. Thing is what I have learned over the years is sometimes people just are not informed enough sometimes.

Did you know that I am disabled according to the State of Utah? Yes that is right. I am on disability. I get paid every month because I am unable to work. Did you know that the average person when applying for disability takes 18 months? Most people get denied the first time around. I got approved in less than 6 months. No I did not employ a lawyer to help me or anything. I just thought maybe I should apply thinking it was a long shot and one day they called me up and said I was approved. Do you know why? Because it is a cut and dry case. Im disabled. All of my doctors will tell you that. My records, my MRI’s and my diagnosis will all back me up. I didn’t manipulate the state in thinking I was worse off than I was, I answered the questions honestly, and gave them access to my doctors and records. The state did the rest. You might be thinking how nice it must be to sit and do nothing and get paid. Nope. Id rather be able to work. Besides being able to have the freedom to go and make a living for myself, the pay would be better, disability only pays you a percentage. So either the State of Utah made a huge mistake and deemed me disabled when I’m actually Psychosomatic or I’m actually really sick.

How many of you have heard of MS? Okay that was a stupid question. Everyone knows what MS is. There are walks, fundraisers and all sorts of stuff to raise awareness, money for research, treatments, the list goes on and on. You probably even know someone that suffers from this horrible disease. I do. She is a very close family friend. Did you know that I have almost every exact symptom of MS? Did you know that for a long while my Doctors were convinced that I had MS I have been tested for it multiple times? I have even asked Dr. Jerry once if he could just treat me for MS just to see if it would help. Problem is it wouldn’t help. I don’t have that disease. But if I told you I had MS not one of you would think I was making it up. No one would second guess the diagnosis, or me. There would even be hope. MS patients at least have people working for them looking for treatments, cures, people that support them. Us Chiarians have no one. There are very very few chapters of people that spread awareness for Chiari. I cant tell you how mad that makes me. When someone that has MS is able to take medication and reverse the effects of their disease and I am stuck degenerating with no clue as to why, and I am called psychosomatic. This kind of thing makes me wanna go Jazzy on everything and everyone. (you may have to ask me to get this reference)

Instead I have to use a wheelchair to go anywhere but I’m able to stand and I feel guilty about it cause there are people that cant get out of thier wheelchair. People give me the dirtiest look when I rush to get a seat on the trax trains. I know I look young and fit but I cant stand on those things. I feel like sometimes just saying to them “I have MS”, but that would be lying. And I couldn’t do that. I have Chiari. You may not know what that is but, thats what has left me disabled. That is what has made it so I cant walk. There are others of us out there like me. Some worse than me, some better. We deserve the same respect as anyone with any debilitating illness or diseases.

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