Rocky Road...

Wow, I was feeling so great what the heck happened!!!!! I started the vest two days ago and I feel like I have been beaten with a bat and have had my head held under a vat of water. I can't get a good breath and am hurting like crazy. I feel terrible because I can't do anything with Amanda, I see the worry on her face when I sit here and have my coughing 'fits' I get in my moods too, I can't help it I feel so stressed out. I just don't know what more I can do to get the mucous out of me. I am on 4 different nebulizer meds about 6 pills which is 5 less than I'm supposed to take, I just can't afford all of them! Ray's working his butt off to pay for stuff around here and I still seem to always have to ask him for mor money by the end of the month. This month is was for 4 other meds and gas to get my diabetic training education, tomorrow it's pulmonary rehab. That's another thing. This weather; I'm supposed to stay in when it's this hot but what do you do? I have to go if I want to make my lungs healthier. I just don't have much hope with a lung volume of 27% is that so wrong of me. I went to the library to find more info on cystic fibrosis and came across a book named, A Little Love Story by Roland Meruilo. He's a weird character in the book, a little hard to read but the story has touched so many cords. His charater has fallen in love with a gal w/ c.f. She's like 27 and he's a yr or so into the relationship and her lung volume is 27% like mine and she talks about the fact that most people she knows w/ that lung volume are dead and now I'm to the point where she has left the hospital to die. The problem I see with my situation is that I don't want to be home to die. I don't want my family to see that. Especially Amanda, Ray can't handle it either. He doesn't know how to care for me in that way. I am so disappointed. I was on such a 'high' this past weekend I cleaned the house and such and now I'm down and out physically and mentally. I want to organize my craft room, maybe I can sit in there and get some stuff done? It's good to have goals. Time for more meds... Well, till next time.

Just a quick blog

I just thought I've write a quick blog. I started a new treatment today and I am sore and wore out. It's a vest that puffs up with air and it vibrates hard and shakes me. I wear it for 20 minutes and I feel like I've been beat with a bat in my back and ribs. I'm trying to get up enough nerve to do it again!!! So, I've been sitting here trying to make some thank you cards but.... not as much success as I would have liked. So, tomorrow's another day! I have diabetic teaching at the hospital tomorrow and am nervous because it's supposed to be 88 degrees and humid. So, I plan on parking as close to the door as possible and pray for a good day! Maybe I'll learn some alternatives so I can not only keep my sugar under control and let me learn how to make the right choices for me and my family!!!

Feeling some relief

I have been on such a whirlwhind since I've come home from the hospital I am so ready to just relax. It's like when you go on the long anticipated holiday and get home and unpack and get everything done, sit back and realize "there's no place like home" feeling, and fall asleep hard cause you're in your own bed. That's how it feels. I have alot of 'work' to do, so I hope I'm strong enough to do it all. He tends to think I can kinda get my life back to some extent. At least he didn't take all hope from me. I am so lucky to have the online friends from my scrapbooking groups, at least if you don't have reliable people 'in real life' it's nice that I have such a great cyber space world. I used to tease my son about his online friends, but now I realize; yes you do have to be careful out there, but when you sit and chat and scrap with these gals you get to know them. I have gotten some of the most beautiful collection of cards and well wishes. I tell you it sure can turn a day around. I've gotten out of bed and felt so 'woe is me' and received a card and it has turned my whole attitude around! Here are the last ones I have received and her are some University of Chicago pics. Some of the buildings and landscaping are beautiful..

Back from Chicago

I am back from Chicago I feel so much better having a 'plan' They did a genetic test to see what type of gene this is. I'm starting a bunch of different inhaled meds thats supposed to thin my lung secrections and that iwll help to help produce a productive cough which should help me get it out. I will write more later, I'm over tired and ready to go to bed. I will try to write a better update tomorrow.

Hello, it's me again...

Well, I'm off to Chicago Tuesday, going to see a specialist for my newly diagnosed Cystic Fibrosis. My new cuss word of the week. I've always known the name of the disease and the face I see with it has always been my brother. Now, it has a new face and it's me. It's something my mom always said I had 'borderline' but I never knew or believed her. So, now I have to face some new challenges and I get angry about it because I feel like what have I been paying all of these 'Dr's' all this good money for? I am not a 'sueing' person or one to play the blame game, yet I find myself wanting to blame someone for such a huge oversight. I guess all the what ifs and shoulda coulda's won't change the fact that it's here and I have to deal with it. Hell, I still am cancer free after 10 yrs, other than my precancerous bouts so who's to say maybe I'll be the oldest living survivor of Cystic Fibrosis.
I haven't scrapbooked in so long so finally I did a layout there is a plan to this... I have asked my husband to take me fishing, something so nostalgic about fishing and a picnic, it reminds me of my childhood. My grandpa was a fisherman, boy did he love to feesh.... so here's my layout, now I have to go take some picnic pictures so I can put it in my book.




Each item (the ketchup, labels etc was cut piece by piece and layered, it's called paper piecing) So this was a timely yet theraputic project, I love paper piecing)

Up out of the bed.

I lost a day somewhere, they tell me it's Tuesday, I actually thought it was Monday. I was in bed for like 20 hrs, I think. I got up around 11 p and sat on a shower chair, barely remembering washing the sweat from my body. I just knew the chills had finally subsided long enough to tolerate coming out from under the blankets long enough to be upright to rid myself of the spoiled milk odor I had become. Thank God for Soap, bubbles and girly smells. Thank God for indoor plumbing, thank God for the sun and another day. I really wonder how much longer my life can go on this way. Unable to enjoy life anymore, I can't even hug my husband, he smells like a cigarette and my daughter I fear is afraid of me and just the 'knowing' It lingers in the air. Every breathe, every emotion everything is painful. This used to be my joy, the computer, crafting, my family life....now I strive to find joy. I cannot believe I have spun so far into an abyss. My sugar is so out of control I am cold and shaky again....279 more meds... Oh my I just read this back to myself..... I have no business rambling on this, you all must think I'm nuts. All this medication all this diagnosis all this .. Maybe I am well on my way. I just feel fear, anxiety and so much more. The fear for me now is thinking back to people who have passed away and always thinking, "she knew" "they kept saying" Just the 'knowing' now. I have been trying to see the silver linings; I always have, but somehow it's like old paint, it's turning grey instead of having the silver glimmer to it... I think I understand 'Ramblin' Rose' That could be my alternate ego today.... Well, enough is enough, I thought I'd post today, yet I have 1/2 the mind...to delete it than I would not have accomplished a damn thing today. I don't really care, raw emotion is allowed sometimes and I think it could be theraputic. If not, well than I'm none the worse.

I'm home

Happy Fourth to most, I am just happy to be home. Although home has been chaotic. Any who, I just wanted to wish all a beautiful Safe Fourth. God Bless You all!

Laurie's Life

I am an avid scrapbooker, cardmaker and general crafter. I have a limited lung capacity so I don't get to get out and play much. I make the best of the talents God has given me in creating, it's theraputic and keeps my mind busy. It's good for the soul. Thanks for stopping by.

MyNiceSpace.com

Update

My Best friend in the whole world!!!
Well, one of my doc's came in today to finally (7yrs later, 3 tests..all inconclusive) to tell me I have tested positive for Cystic Fibrosis. Which all along I pretty much explained it to people that it is an adult type onset of c.f. I'm for some reason feeling like I'm in shock! I feel so emotional today and I am having trouble understanding my feelings Maybe I am going nuts! You would think that something you have lived with for many years wouldn't really change so much by adding The Label to it? Emotions, wow they can stop even the most proud leaders of countries... I am reminded of the old commercial with the Indian looking across the land full of garbage and debris ( a pollution commercial) Anyone remember that one...boy I'm showing my age. Any how the silver lining, I am one of the oldest survivors to cystic fibrosis. You know how bad things seem there is always a silver lining. Thanks for letting me ramble.. Here I am in all my glory...Here I am, ALIVE... I'm Laurie.

Well, here I am again

I believe this was the culprit day that landed me here...hot humid sticky, but a beautiful memory...so worth every moment. I love the water & my daughter and making those memories!!!
My return visit to the doctor landed me here again. Not in the best shape of my life I might add. I am back to my old hospital and NO the OTHER hospital that everyone kept telling me to try STINKS!!! I felt like Dorthy..... there's no place like home... (Hey guess you won't know if you don't try.) I just never can feel any better at home. DELETED; TO MAKE HOMELIFE LIVEABLE!!! This section of blog did come off wrong. My husband is a good father, as far as my daughter and him go they just don't get to spend enough time together and he's more strict than I am. I am the pushover. There, hopefully that is clarified as not to offend anyone! I can totally see where that would hurt him. Men don't get the blogging thing, telling your personal feelings, for me it's theraputic, but I totally understand where you have to be careful what you 'put out there' My intentions were not to hurt him, he is and has been an awesome dad, I would never try to take that title from him. I apologize publically for hurting him. I really feel bad, I just need to re-read things sometimes, cause when they're in my mind and I'm typing them, I know what I am trying to convey but it doesn't always come out right. I love him and don't want to hurt him. We don't always agree on stuff but I know it's ok to 'agree to disagree'....My son on the other hand feels like my stranger, we were so close once upon a time. I sure miss him more than I can ever express, they can't stay young forever, it's so hard to let go. I've never dealt with letting go well. Well, enough rambling, I've been up all night long and it's 7a.m. est and I am gonna lay my head here till breakfast, of course I'm on EXTRA steriods so yes, I'm EXTRA starved... Just what the heck I need!!! Thanks to my cyber pals for readin' my ramblin' if I didn't lose ya a mile back... Hugs xxoo