Well guys, I got a letter today. A letter that I knew would come yet, really hope it would not. A letter that held something essential to my life. I got my first denial letter for IVIG. The doctors said that this would happen. After all it is a $20,000 treatment. But IVIG is my whole future. My life practically depends on this. It just really sucks. I wonder what that person typing up the letter or mailing it thinks. Do they know that my life won’t get any better until I try this treatment? That the years of sweats, pains, and aches may settle down after having this treatment? Probably not. Nor do I think insurance really understands it. I mean they do, but they don’t. It’s just not fair. I know I am going to keep pursuing the treatment until I get it but nothing about this horrendous disease has been easy.
I was sitting in the adult pool at my swim club today looking around at everyone else. Obviously most all of them were older than me but much in better health than me. Then I did my typical list in my head. Evaluating everything wrong with me of course. The top of the list was why do I have to be fat and sick? Why is weight a part of this disease, and why do my meds take control of my hunger? This disease LITERALLY wrecks havoc on my whole system. My hair will start falling and thinning out. My legs will feel so weak they’re like spaghetti (especially, while trying to get exercise today). Not only am I fat, but you can see every blemish on my pale skin (my skin biopsies, bruises from giving blood or IV’s, cellulite, etc.) My body hides NOTHING.
I am sure to everyone else I look like a normal girl but sometimes I wish I could scream out and tell everyone why I look a certain way or why I do certain things. It’s truly frustrating. But it has really taught me to never judge a book by its cover. You never ever know what’s going on in someone’s life.
I know I have to learn to deal but I think that is also one of the hardest things with being chronically ill. I may look like I deal but I still don’t deal. I just brush it off and act like everything’s okay. I really don’t like to really get in deep on the topic because I just don’t deal or I don’t have words for certain parts of my illness, I simply just shrug it off. And when I can’t have something or go somewhere or whatever, I don’t cope I just say in my head “it’s fine, of course it would happen to you, you’re used to it anyway.” Obviously, I need better coping tactics but it’s not even like I want to try. I guess you could say my blog is the way I cope. It’s easier for me to just put my words into a post. Although, since I do have pseudo-dementia I do forget a lot haha.
Pseudo-dementia is a form of depression oddly. I did some googling and it was very interesting to see why and how people develop it. I obviously know why I did. Being sick will put you through the ringer mentally and emotionally. The built up residue of everything it has socially did to me has formed into a depression. While I may not feel depressed or upset sometimes, the pseudo-dementia is always there. It’s quite embarrassing too. I think people think I am dumb and it’s really annoying because I am not going to go around telling people why I am the way I am.
Basically I went on a rant tonight and I am very sorry but I hope you could take a little bit away from this whole thing. An chronic illness will effect you in every way and you may not realize it.