Aimee's Entry - Thank You!

Evan... I quite simply adore you. Seriously. I already said this but I think you're amazing. Thank you baby.

g_c... I am a survivor… far more than you know. Thank you for reminding me of that. Your sunshine? That's the sweetest thing anyone has said to me in God, I don't know how long, thank you. Te quiero también... con todo mi corazón.

Castor... My relationship with my mother is lovely, she's my mother as well as my best friend. And although I rarely follow her advice (much to her dismay) until it's too late, I do respect her opinion and her advice immensely. I hope you have a great weekend too.

As for the swelling, well, it's still here as big and puffy as yesterday. I’m still in pain and I'm still grouchy. My mother is still riding my ass and still spouting off things like blood clots and pulmonary embolisms but I promised I would take care of it first thing Monday morning. And I will.

I don't openly talk about my medical problems very often, of course, if someone asks me about them, I'm more than happy to tell all (my doctor once told me that discussing my illness was a good way to get past my hang-ups about it and it educates those who don't understand). Plus, I have nothing to hide, I'm not ashamed of what I have, it's just that I don't like to push a lot of medical bullshit off on people who could really care less about it. But I'm going to talk about it now. If you care then keep reading, if not then feel free to tune out here.

When I was 22, I started having some serious problems with my health. I'd always had problems but nothing that severe, you know? It was scary but in my typical "fuck-it" attitude, I just shrugged it all off but unfortunately, it didn't go away, it only got worse. My wake-up call came one night on the way home from work. I worked for Publix and they decided to send me home because they didn't see any point in keeping me there when I was darting off to the bathroom every 5 minutes. On the way home I had to pull over on the side of the road, it was fucking awful, I was so weak I couldn't get out of the car so I just sort of hung my upper body out of the door while I vomited. I had another 25 minutes of driving before I made it home but my parents lived about 5 minutes from where I was so I decided to go there. They weren't home so I was just going to lay down on the porch and wait for them. I was numb from head to toe and it was freaking me out. I got out of the car and started walking toward the house, I was halfway up the driveway when I went down. And that's where my Uncle found me when he came home, passed out, my upper body on the lawn and my legs in the driveway. He carried me inside and waited for my parents to come home.

It was time to get serious. There was something wrong with me and my "fuck-it" attitude wasn't going to fly anymore.

I won't lie and say the next few months were a walk in the park, they weren't. They were miserable. I was tested for everything from a thyroid problem to Crohns Disease and they found nothing. I had a slew of blood tests, numerous intrusive and uncomfortable examinations, an Upper GI, a Lower GI, an Endoscopy and a Colonoscopy. After the last test (Colonoscopy) my gastroenterologist was baffled, he didn't know what the hell was wrong with me. My upper and lower GI track was covered with polyps (they were benign) and he told my mother, "I don't know? I've never seen anything like it. I'm not sure what to do."

Do you know how awful that is? To know that there is something wrong with you and nobody can figure out what it is. You're left in some kind of torturous limbo... Will they ever figure it out? Is it serious? Am I going to die?

I was a fucking wreck.

But the man was vigilant, he wasn't going to give up without a fight. There was something wrong with me and he was damn well going to find out what it was. So, he went to the Pathologist (bless the man) and told him my sorry tale. The Pathologist studied my blood tests and he noticed an abnormality. My T-cells were too high. They were way above normal level. Dr. P. told us the Pathologist shook his head and said, "You need to test her B lymphocytes, she has an immune deficiency." -
A what? What the fuck is an immune deficiency? And after all these hellacious tests how the hell could he tell that by looking at some damn blood test? I wasn't convinced.

But the man was absolutely correct. I have an immune deficiency called Hypogammaglobulinemia (tongue twister), doctors typically refer to it as CVID (common variable immune deficiency) or just CVI (common variable immunodeficiency).

Let me tell you, I wasn't happy about it. At all. I rebelled something fierce. I became moody and withdrawn. I refused to accept it as my reality and my parents finally forced me into counseling. It didn't help. Fuck her, fuck this disease, fuck it all. I was a very bitter woman and harder than hell to deal with. But I came around. What choice did I have?

There is no cure for CVID but it is treatable. I have to have intravenous immunoglobulin therapy. It's miserable. I fucking hate it with a passion I couldn't possibly describe. It's long (about 4 hours), painful and you feel like hell for days after it's done. I have to be pre-medicated before the infusions because I have a nasty reaction and that shit knocks me into a drug induced coma that's harder than hell to come out of, I lose a couple days every time I have an infusion. I have an infusion every three weeks.

As I said, I came around. I've fully accepted that this thing is a part of my life now and if I don't take it seriously, it could kill me and that's not an option because I have a little boy who loves me and depends on me, I can't let him down.

The only thing that I still have trouble accepting is what it might mean for that little boy who loves and depends on me. When they first told me that I have this, they said it wasn't hereditary but we've recently learned that more testing has shown that it is hereditary. Not all children who's parents have CVID get the disease but some of them do. I've tried not to think about the possibility of Cameron having to go through the same nightmare that I do but my immunologist told me that it's time I bring him in so he can get tested.

I've accepted that this is a part of my life but I wonder how the hell I'll be able to live with myself if he has to accept it as a part of his?