Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 overall she is well, i am concerned about her not gaining weight and despite her enzimes she has diarrea (sorry for poor spelling) the vest treatments are helping alot. dwson2 wrote:I found out on 2/28/03 at 4:00pm that my one year old son had cf. I will never forget that day/moment as long as I live. I am new to this cf disease as well. This list has been a great source of information and comfort. How is your 3 year old doing? Where will you be having her cf clinic visits? Sara- mommy to Zach 17 months wcf > i am a mother of three wonderful girls ages 10, 6, and 3. my three year old has recently been diagnosed with c.f. (3/21/03) i have a friend who had a daughter that died from c.f. about 4 years ago at 18. she had just graduated h.s. and the day she died she got an acceptance letter to a college. i don't know much of what to expect or anything so i am scared. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 HAHAHAHAHAHAHA!!! I do LOVE reading your e-mails, Kim! LOL You have SUCH a great way of putting things!! That made my day! Smiling still, S., mom to Cody (7, pwcf), DJ (9, nocf), and a (14, nocf) Re: introductions > Geez Louise, ! What kept you from gingerly grinding a > high-heeled shoe into the top of your step-mother-in-law's foot or > accidently sprinkling arsenic into her tea? > > It sounds like she was talking about hemophilia or male-pattern > baldness. Those DO come from the mother's side! > > To this day, nearly 20 years later, I still remember telling my > mom-in-law about the positive sweat test. I'd gone to her house to > pick up (she babysat for us the day we went for the > test). When I told her the test was positive, she asked what CF was, > so in a nutshell (after nearly 20 years, I've still not been able to > give a nutshell description), I mumbled something though I don't > remember what I said. > > She replied, " Well, all I can say is don't have any more kids! " > > Uh, yeah. Like that was uppermost in my mind at that moment. > > Every time after that whenever my father-in-law coughed, she'd wonder > if maybe he had CF because " he always had bad lungs. " > > Gee, and I thought it was because he smoked unfiltered Lucky Strikes > cigarettes every day since he was 11 years old that had something to > do with those bad lungs. > > Later, after my father-in-law died of a heart attack, my mom-in-law > went to the doctor for a check up. Her doctor had retired so she had > to see a new doctor. He asked her how long she'd smoked. She got > really ticked off an insisted she'd never smoked in her life. He held > up her x-ray and said, " Never? " Then shook his head, diagnosed her > with asthma and prescribed an inhaler. > > Her father was a lifelong smoker; she married at age 17 and her > husband was a smoker so her lungs never stood a chance until her > husband died and she finally got to live alone with clean air. But she > doesn't see the connection between the secondhand smoke, she thinks > she has asthma because her husband had bad lungs and because her > grandkids have asthma. > > Ya gotta love mother-in-laws... otherwise we'd all be in jail for > spiking their tea with arsenic. > > Kim > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 In a message dated 7/31/2003 9:54:15 AM Central Daylight Time, kimpayne@... writes: > , same thing happened here. > > A long time ago, someone once told me " My cousin has that CF too but > he's in a wheelchair. " I asked if the cousin had cerebral palsy -- CP. > " Oh, yeah... that's it, I knew it had a C in it. " I said, " I have a > cousin with CP too, and he also uses a wheelchair. " Thankfully, that > was the end of the conversation. > > You brought up an excellent point, though. How much of any disease or > chronic illness do we know about until it hits us personally, or > family or friends? > > My oldest sister has celiac, her oldest son has Tourettes but I only > know the bare basics of either of those afflictions. > > My youngest sister has rheumatoid arthritis... but still I only know > the bare basics of RA. I know more about seeing this once lively young > woman gradually deteriorating in pain, and how my heart would break > seeing her go through this until a new med became available about four > years ago. She gives herself a shot in the abdomen twice a week... > that's still pretty much all I know about RA other than she's now > doing 100% better. > > My father emails me details of his glaucoma and cataract surgeries, > and happy results of rectal polyp and prostate exams... Geez, Dad! > Give me a break! I don't wanna go there! > > Every time we meet someone who doesn't know about CF is just one more > opportunity we have to introduce them to our world. We never know when > someone we meet might years later put the information to use. > > A few years ago, I met a young college student; I was holding a CF > awareness event on our university campus that first year we launched > the CF Awareness Week campaign. This petite, friendly young lady with > a tatoo and pierced eyebrow came by my office to introduce herself. > She said she had a two-year old daughter with CF. > > It turns out she'd grown up in our town, a close-knit university town > of about 40,000 people. There are six elementary schools but only one > each middle school, jr. high and high school. > > She said she was in 7th grade when a fellow classmate, Marcus, died of > CF. I knew Marcus. At the time, Marcus and my son were the only people > in our town with CF. The boys attended camp together until they closed > CF camps. was in 4th grade when Marcus died; we attended his > funeral, something I'll never forget because that day I was reminded > that my son is a truly rare person with a extraordinary soul. > > I knew Marcus had been very popular, especially with the girls. The > young woman told me Marcus had been her friend, everyone's friend. > Shortly after graduating high school she found herself pregnant, gave > birth, and eventually the baby was diagnosed with CF. She said she > never would have known about CF if she hadn't known Marcus. The > diagnosis seemed to give her a sense of peace and connectivity to > Marcus. And a purpose; she embraced the opportunity to raise awareness > about CF. > > So sure we get tired of saying, " No, he hasn't outgrown it; yes, he > still needs his enzyme... " But perhaps these are tests of *our* > patience and willingness to be awareness messengers? > > Kim This is really weird because my mother in law has celiac and my husband has RA!! It just funny how you seem to find these two disease in a family that also has CF. Deb A Quote Link to comment Share on other sites More sharing options...
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