Need help... and stories

[tiregrl19]

I have not posted in a while because I was trying to deal with my
CF in my head as well as physically.... that being said I am now in
a 'happy place' and am ready to start fundraising again. I trying
to shed some light on what people with CF go through on a daily
basis, things that most people wouldn't know about. Since every
person is an individual and has a story, I want to hear them. All
of them!!!  I am looking for any funny memories, sad memories
or any memories in between that you wouldn't mind sharing with me.
I am looking for your memories and experiences with CF that most
normal people wouldn't have had. Experiences with doctors,
hospitals, pills, bowel issues, weight issues, mental health
issues, physical health issues. What ever you are willing to share.
Memories about when you were diagnosed (or your child/spouse), what
your first thoughts were when you were told about CF, what
struggles there have been because of CF. Like I said before I want
to hear your stories and get to know you better!! If you feel more
comfortable you can send me a message or just post it here... I
look forward to hearing from you!!<br>
<br>

 

[anonymous]

Hi I have a child that is six years old living with cf. We found out he had cf just before Thankgiving about four years ago, we had aready had a daughter five years earlier but she was healthy. The reason why he was tested was because they naturally thought it was asthma. Non of the meds worked that was giving to him. That's when the doctors decided to test him for (cf). They told me that the test might come back negative. The reason why they said that was because he was not the kind of (cf) patient that they usually see. So I didn't think nothing of it. Iwent on by my business. But at the same time it kept popping up in my mind the word (cf) what the heck was that and how you get. See before than I have never heard of it. I started asking around and come to find out alot of people knew about the disease. After I got a little educated, I got the call to come in the get the test result. When they told me that my son had (cf) I broke down and cried my eyes out.<img src="i/expressions/face-icon-small-sad.gif" border="0"> It was so bad that they had to take my son out of the room so that I could gather myself together. I still sometimes cry but I don't let no one see me. I'm trying to be stronge for everyone especially for him. I am lucky because he have alot of goods days and a few bad days. I know someone is watching over him.<img src="i/expressions/face-icon-small-smile.gif" border="0">

Tee.Tee

 

[momtoCory]

Hello-
I am the mother of a wonderful 20 year old. Although it hasn't always been a wonderful 20 years, I blessed every day for the struggles we have been through as it has made us grow closer.
I remember when Cory was dignosed as if it was yesterday. I was 18 years old. I had a 2 year old at home. He was so sick from the beginning. Failure to thrive. The first doctor wanted to do surgery on him to keep him from throwing up. Surgery on my 3 week old baby, Are you nuts????? I went to see another doctor. He diagnosed him right away. CF was the first test he ran. My entire world shut down. I cried and cried. But at the same time I was 18. I had an 18 year old's attitude to go with it. I grew up fast. Luckily I we had some great nurses and RT that made sure I would grow up. They told me " this child isn't going to leave our sight until you learn to take care of him, so GROW UP". Grow up I did and eventually ended up working as an RT myself right along side of them.
I remember when Cory was 4. He told me he knew why he coughed. he coughed because he had a 6 pack of roses. his version of CF. Today, I will still ask him "How's the six pack". It has been a special way for me to ask about things without him feeling embarressed.
At 7, he told he was going to die when he was 10. He had no understanding of death or CF. Boy, when it came close to his 10th birthday, I held my breath. I just wanted to get to 11.
I have treated Cory like any other person throughout his life. He wasn't secluded or kept from anything. Often Cf got in the way, but we always gave it our best shot. Basketball tryouts were a nightmare as it was requirement to be able to run 2 miles. Cory cried himself to sleep that night.
Cory is now 20 and amazing. The things he has been through, I consider him an inspiration and my personal hero. He is the strength that gets me through every day. We cry together, laugh together. I am thankful everyday that I was given him to love.
When Cory was younger I wrote a personal story about Cory and when he was diagnosed. It was very healing for me. I was so afraid to say "I hate Cystic Fibrosis". I was afraid if I said it, I hated my son. So I dealt a great deal of burden. Writing that story really began a healing process for me. I learned the enjoyment of writing. i don't spell well, I have horrible grammer but I love to express myself. On that note, I can also be very long winded.

 

[anonymous]

Dear momtocory,
Your letter sound as if I wrote it myself alot of what you felt is how I feel now. My son illiness made me grow up very quick. I already had a child before him but I still was in that kid like stage. CF made me a better person. I wish it didn't have to come to this to find out what the disease was. Before this I did'nt know what it was until my son came down with it. Now I ever time someone in the family get sick I encourage them to get tested. One thing your letter made me see is that my son has a fighting chance against this disease. He could still have a future even with (CF) effecting his life.

Thank You
Mcc.

 

[EnergyGal]

Hi Steph

You can look through all the blogs and you will find some interesting stories. If you go to their first few entries that will sum it up for you. Hope this helps.
That is wonderful that you are fundraising.

 

[tonrsoul82]

I got plenty of time to spare so I will write a nice lengthy
"report" for you on my life with CF.  ATM I am in
the hospital but will be getting out a little later today.<br>
<br>
I was born on December 16, 1982 in Miles City, MT.  From what
my mom has told me shortly after I was born I started getting sick
and was in and out of the hospital for the first 6 months of my
life.  At around 3 months old I got deathly sick and no one
could seem to figure out what was wrong with me.  My Dr. at
the time had tried several tests.  Out of the blue one day he
decided to test me for CF.  It came back positive.  From
about 6 months old until I was about 2 years old I was in and out
of the hospital every month or so for a few weeks.  Again at (
I think a 7 months- 9 months old) I got deathly sick again.
 Well my Dr. was out of town getting some more training.
 So the other Dr. that I was seing didn't know much about CF
and was unable to treat me well.  Well my sodium level was
dangerously low.  My Uncle told my parents about a Dr. in the
city where he lived and said he was a great Dr.  He made me a
appt. to go to his city to see the Dr.  The Dr. their did a
test on my sodium level and said if my parents had not gotten me
their sooner to get the test done and get some sodium into me I
probably would have died with a week.  From about 2 years old
until 15 CF really did not effect me at all. I still did treatments
and stuff and was the runt of the group.  In middle school
seventh grade if I remember right I could run the mile in 6 minutes
flat.  I never quite "fit" in with the rest of the
kids, so I kept to my self mostly.  I grew up with about 2
friends and in middle school they went their way and I went my way.
I met a guy In middle school who, to this day, is still my good
buddy.  But I always strived to be like the other kids to run
just as fast as they could play sports just as good as they could.
 But being a little guy my parents would not let me play
football or any contact sport.  I did play baseball though for
3 years.  I can recall for most all of my life I did neglect
to do my meds and before I got the vest I would always try to hide
when it came time for my dad to do my chest precussions.  It
was not until my sophomore year in High school that I had my first
hospitalization ( that I can actually remember) for antibiotics via
IV.  It was also the year that I got my Make A Wish.
 With my wish I wanted a truck ( In Montana we can get our
drivers license at 15) but what I did not know was they would not
give people a vechile for a wish cause of insurance purposes. so
they gave me my second wish, which was a computer. I kind of regret
getting a computer, cause my last wish was to meet Dan Marino.
 I remember my first hospitalization real well.  It was
almost like it was yesterday.  I neglected to go in cause I
did not want to be away from my computer for 10 days.  But it
got to the point where I would get up at 7:00 go to school get out
of school at 3:30 and go to bed and sleep until 7:00 in the
morning.. After a week of this I decided it was time to go in.
 After 2 days in the hospital I asked the Dr. if I could have
my computer brought in.  She said she did not have a problem
with it.  So I got my computer brought in and played games the
next 8 days probably 16 hours out of each day.  I didn't do my
school work got behind and was almost to the point of failing.
 When I was a junior in High school one of the
hospitalizations which was about second semester I decided I had
enough of school.  I had 1 friend in school alot of the kids
made fun of me because I was different and the teachers treated me
differently.  By different If I went in the hospital I would
not have to make up some work mainly tests. So I decide to quite
and dropped out of school at 17 years old.  When the next
school year came around my only good friend got me to go back to
school and I decided to.  It was a repeat of my junior year.
 Half way through the school year I gave up.  I started
to work at Wendy's and met some people that were a bad influence.
 I started drinking then.  I got pretty bad about it I
was to the point where I was getting drunk about 3-5 times a week.
 I thought it helped me cope with the knowldge that I would
die young.  It only made things worse I got depressed real
depressed. But later that summer I met a guy and he us a few years
younger then I am.  We hung out alot partied alot.  When
the next school year came around he told me I should try to get
back in school and finish up.  I was 20 years old and thinking
yeah right they won't let me back in.  Well they did.  I
am happy to say that I graduated high school. I was 2 years late
but when I got that diploma it was one of the happiest days of my
life.  While that final senior year of mine though was one of
the worst years of my life as well.  I got in trouble with the
law.  I was at a party that was about 2 blocks from the high
school.  One night I went in the high school drunk and took
some stuff and got caught.  I confessed and nothing really
came of it except for me to pay for the damages.  Well that
was the begining of the trouble.  About 3 months after that
incident I was driving home drunk and put my car in the ditch. Well
I got out and was walking home and I don't know why I did it but I
got in my neighbors truck and the keys were in it so I took it for
a drive.  I ditched the truck down by the river and woke up
like a mile from the truck and passed out.  Well during my
whole partying days I rarely did my treatments and It got to the
point of where I was in the hospital every 3 months or so. I think
what opened my eyes the most was when I sat in jail for 11 days.
And while I jail I had to do my treatments ( By then I had the vest
foregot to say that I got the vest about my sophomore year) as
normal.  When I got out of jail I was put on house arrest for
about 5 months.  Well in them 5 months I had time to think
cause if I was not at work or chemical dependancy/angermanagement
classes I was home.  So I did my treatments as normal and went
6 months without a hospitalization.  Also when I was I think
21 years old the Dr. decided to test me for Diabetics because I was
unable to gain one pound of weight, just the opposite I was slowly
loosing.  So then I was told I had CFRD.  That was like a
kick to the balls.  I was in denial for the longest time I
would not test my blood sugars or take insulin no way no how.
 Although I am not on top of my CF and CFRD like I should be I
do the best I can and am slowly getting better.  That is about
my story of my life with CF.<br>
<br>
Hope I didn't Bore you all to much.<br>
<br>
some other highlights:<br>
during the 9-11  incident I was in the hospital.  I
remember turning on the TV and watching the second plane fly into
the tower.<br>
Was also in the hospital for my 20th Birthday.<br>
  

 

[tonrsoul82]

Oh yeah kinda got off what you wanted to know I think ( I hope
not)<br>
About pills and meds ( you will have to excuse my spelling some of
these meds are impossible to remember how to spell)<br>
I grew immune to leviquin.<br>
Predisone  gives me god awful injestion.  to the point I
can't take a drink of soda without it burning all the way down.<br>
Paxil  has some weird sexual side effects, made real jittery
also when i would yawn it would feel like my heart was gonna jump
out of my chest.<br>
<br>
<br>
Worst Expierence with a Dr. was one new one I was trying..  I
got a cold he put me on leviquin even though I told him my body
grew a immunity to it and it don't work.. HE told me to drink alot
of water.  A week later I was in the hospital.  14 days
later I had myself a new Dr.<br>
I think my biggest mental health issue was always growing up with
the knowledge when I was young being told average life span was 18
years old.  I know during my partying days that probably was a
main reason to party.  I figured I was going to die in a few
years so what the hell.  I am unable to gain weight.  I
can not get over about 130 lbs.  I average about 125.  I
know when I start to get sick I loose weight.