Ok, so I started this blog in an effort to find the positive things in my life and to maybe help others with a similiar diagnosis do the same thing. Problem is, once I set the blog up I realized I really didn’t have much to say about my life that was positive. And I didn’t want to talk about the negative. I created a blog to talk about a disease, that I don’t like to talk about. I didn’t like to think about it and above all I didn’t want to complain about it, because I can’t stand those complainy whiny people who all they do is talk about themselves and it’s always the,”poor me oh why oh why poor me….” I didn’t want to be one of those people. So I won’t be whining about my disease here. If at any point I seem to be getting whiny, reread my post then deal with it! No seriously, tell me, because that is simply not who I am and if I get to that point, it may be time for a med check. Seriously.
Before I tell you about my disease, I’d like to tell you about myself. Maybe ease into the whole OMG I’m DYING and I’m so YOUNG and blah blah blah. Heh, see what I did there, I just blurted it out so now we don’t have to wonder anymore do we? Yes, it’s terminal. No I’m not dying today. I’m working towards being listed for lung transplant, you wouldn’t believe what all a person has to go through just to get on the LIST. But that’s a different post alltogether. But enought about my disease already, let me tell you about ME. Because I’m awesome and if you knew me you’d undoubtably agree to my awesomeness. Even my kids think I’m awesome, most of the time and so does my husband, enough of the time haha.
My name is Annette, which I gotta tell you, growing up in the 80’s and 90’s it was quite the burden. You can’t find it on anything and in a room full of Amber’s, Elizabeth’s, and Katie’s with their names on their shirts, jewelry and pencils, life was tough, man. Of course I didn’t realize we just didn’t have the money for special order crap like that back then so naturally when I had my own kids I was sure to give them nice normal names you could find on stuff.
Except for my only daughter. Yeah, her name is Alien.
But I can explain….my ex is was an idiot stoner and I was on a good deal of morphine. They have you sign all the paperwork before surgery. I had an emergency cessarian with Alie, and actually ended up needing a blood transfusion after she was born. Anyway, Mr. Donor man who will remain nameless puts her first name down as Alien, kept the middle names but changed her first based on a bad joke about her sonogram picture. Although, she really did look like a “gray” in that thing! So yeah, my daughter was saddled with an equally unappealing first name but like me she’s grown into it, she owns and likes it now. My grandmother never used it. She always called her Sandra, which is her middle name, and consequently my grandmothers first name. She bought her things with the name Sandra on them. But that was just my grandmother. Ornery and one way about, well, everything. We still miss her terribly.
I actually have three kids, Christopher is the oldest. He went to live with his father when he was 8 and I barely know him. I only hear from him when he wants something, and he’s 24. Yep, I was barely 16 when he was born and I made mistakes, but I was just too young. Alie’s 17 and I feel it’s a personal accomplishment that she hasn’t gotten pregnant yet. Yay us! Kyle is technically my middle child, but since his older brother didn’t live with us he never got middle child syndrome. Kyle got the one where he’s second but acts first born. Yeah, he’s got a serious Alpha type personality, but so funny. He’s got a sense of humor like my dad used to and he’s really really good at calming situations down. Don’t get me wrong, he’s equally adept at situation escalation, but I like him best in his funny peace keeper mode. He turned 18 this past June and has enlisted in the Army for after graduation this comming May. He’s due to ship to basics the day before his 19th Birthday. I’m terrified. Proud as hell, but terrified. He laughs at me. He doesn’t understand the always my baby thing.
Speaking of birthdays, mine is in four days. This is significant since I nearly missed my 29th twice. Since my diagnosis with Alpha-1 Antitrypsin Deficency and Early Onset Emphasema, which was caused in part by smoking but in larger part because of said deficiency, every birthday has been a blessing. This one no less than any other, the big four-oh doesn’t bother me. I’ve been married leglally three times, but this is my first real marriage. If you don’t understand that statement, you’re probably single or should be. My husband, Jeff and I were married April 30, 2005. I had my first episode of respiratory failure on June 10, 2005. My kids were 5 and 6 at the time.
That should tell you everything you really need to know about the amazing man I married. We had no idea I was sick when we got married. When we found out I told him I never would have married him had I known. This disease is genetic and I watched my dad go downhill and my mom struggling to care for him right up to the end, and it could have really been so much worse than it was in reality. I would have done almost anything to spare him and my children going through what we had with my father. Jeff’s reaction? when I woke up on a ventilator and could only write what I wanted to say, and with difficulty as my hands were bound to the bedrails at the wrist, he told me he wanted 50 years from me. He made me promise him 50 years, and that his job was to take care of me. What do you say to that? To that type of love and devotion? I promised.
So when I said I had nothing positive to say about my life, I was wrong. What I meant to say was that I couldn’t see the forest for the trees. I am blessed and the positive things, the positive people are all arround me. My husband, my children, my friends and extended family. Maybe it’s cliche, but it’s also true. Welcome to my world, it’s a new day, and I’m breathing on my own, and my husband is at work and fall break is over tomorrow for my son, my daughter went back today. It’s a new day and tomorrow will be too. I am blessed.