Just wanted to say hello

PJMak1985

New member
Hello everyone,

My name is Peter jeffrey Makris. I am twenty seven years old and I have Cystic fibrosis, two copies of delta F508. I have been reasonably healthy for a large part of my life. I grew up healthy with the yearly visits to the hospital for my "clean-outs". I made myself sick for many years with drugs and alcohol for one reason or another. But I made it thru to the other side for now. I have been sober for three years in April 2013. My PFT's are close to normal. 98% or so and other than a cough and excess mucous production and the occasional wearing down from work, I live a normal life. I have a job I work 35-40 hours a week to maintain my apartment that I live in with my girlfriend. I am very grateful to my family and friends for supporting me for a long time. emotionally, and somewhat financially. It is hard raising children with CF. I understand that now. It was always so hard for me to even admit that I was in any way different than anyone else. But my days of wanting to live in the wilderness off of the land are over. Thats not for me. I have accepted that. I have accepted that there are some things in this world I should not do. Not only for my own sanity but for the people that love me as well.
People used to ask me in grade school if I was going to die, they still do. When are you going to die? they say. I dont know, when are you going to die? Ive read that someone born with CF in 1985 had a life expectancy of 25. I dont know if thats true but I feel as if I have surpassed my life expectancy. Maybe its the same way someone feels when they turn 100, like they've beaten the odds. I am going to live to be an old man. For some reason I know that, dont ask me why. I suppose I am more scared of growing old with CF than people without CF are. Oxygen, Drugs, Pain, Not Sleeping(Thats the worse) Coughing. God I hate coughing. Coughing symbolizes everything unhealthy about me. It reminds me once ive forgotten. I suppose thats why I hate it, a constant reminder I am living on borrowed time. That any day my PFT's could start plummeting and I could be hospitalized and die. Im actually kinda laughing as I wrote that, that doesnt scare me. What scares me is hurting the ones i love. Watching them watch me decline. Thats what scares me. Death to someone with CF is beautiful. Death is peace. I do not want death, I love life. For the first time in my life I am the man I was supposed to be. I just want to live as long as I can as healthy as i can. Thats my goal, and have as much fun as possible but aslo dealing with the responsibilities a man must deal with. Life isnt easy but who's is? People ask me what its like having CF, being sober, having to deal with everything. I say its like brushing your teeth. We all have to brush
our teeth if we want good hygiene. Well I have to do certain things everyday to remain healthy. It may take a little longer than brushing your teeth but its the same. Im just brushing my teeth. Any ways. I love all of you, I know none of you, but I love all of you. Thanks for reading my first blog ever. God bless
 
G

Guest

Guest
Beautifully written! I can relate to everything you write here (I'm 33 w. CF). Part of the journey w. CF is acceptance. And not wanting others to feel pain. Glad you're here. Keep writing -- you're not alone!
 

azdesertrat

New member
Boy, I can sure relate to you Peter!
I suffered a lot of self-destructive tendencies when I was younger. I think it was partially due to being told I probably wouldn't live to see 'This Age' or 'That age'.
Now, if I knew I was gonna live this long I sure woulda taken better care of myself!
I'm certainly happy you out-lived your self destructive habits. Maybe now, you can get down to enjoying life. At least, I certainly hope so. I think one of my major problems is now, I'm OFFICIALLY, an Old Guy with CF!
Welcome! I hope to hear from you often. If you'd like, at some point we could exchange e-mail addresses & compare note.
May God bless & be with you, 'Pat'.
 

PJMak1985

New member
Thank you all for your kind words. Its good to know there are people out there dealing with the same issues and problems of life. I never really reached out to others with CF, but now with social media it is a lot easier and safer. i suppose I never wanted to get or give any unwanted bacteria. Being brought up in the world around so much western medicine you become painfully aware of the silly dangers that come with close contact with other CFers. Anywyas, thanks again all. And Id love to compare notes Pat. Hope all is well, peace and love. And call me PJ
 

azdesertrat

New member
PJ- Like you, I never reached out to others with CF until I found this forum.
There are times when this is unbelievably therapeutic. I've been prety amazed at that; I never thought that associating with other 'CF'ers' would actually help. I
'll send you a private msg with my e-mail address.
Take care, I'm looking forward to hearing from you. 'Pat'.
 

Kxray328

New member
Well said, the no sleep part really grabbed me. What do you do when u can't sleep??? I have the same two genes and my oft is pretty awesome too. I suffer more GI issues like blockages but when it's manageable my weight is great. It's good to hear your doin good! Keep up the good work!
 
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