Hi, I'm Stephanie... I'm 18 will turn 19 this year. I have cystic fibrosis.. Why, else would I be posting in this CF help topics. I'm also a diabetic. I do the whole poke myself 6 times a day to eat those foods I love so well. I count my crabs even though I'm not fat nonetheless. I mean people with CF. CF Fat isn't there problem. Our problem is keeping this fat on us. I do weigh the best I have weighed in a my whole entire life. I'm 115 pound baby and counting. I got weight after I became a diabetic. I put on 20 pounds. Yea 20, so b4 I look like a one of those kids u see on t.v to feed the hungry children of the world commercials. I do believe without this weight I wouldn't be here now. I have a port. My port is a god sent! Without my port I would have been object to many IV's that wouldn't have last more than 2 days and pic lines that would have more scars on my arms and blown my veins. Had the loving feeding tube but, it didn't do to well with me a year ago? So, now a hole lays within my belly. I have an extra belly button as people tend to tell me. I look normal enough. But within me. This mucus lives and grows and causes me to go in and out of the hospital my whole life... I have since 2000.. . Here are my hospital stays written down..Here's the truth of my life. You want to know where I spend my time well. Here. Read all of the date's I went into the hospital. Since 2000, well part of 2000. Went into the hospital< Stayed in 4 how long > Got out of hospital14-15- years oldYEAR 2000Hospital StaysAdmitted__stayed in__discharged. 6-9-00 > 10 > 6-19-009-17 > 11 > 9-28-0010-12 > 13 > 10-25-0011-6-00 > 15 > 11-21-0012-5-00 > 19 > 12-24-00Total days spent in hospital since 6-9 > 68Stayed out a total of days since 6-9 > 29715-16- years oldYEAR 2001Hospital stay'sAmitted__Stayed in__discharged.1-26-01> 10 > 2-5-013-15-01> 14 > 3-29-015-1-01 > 17 > 5-18-016-28-01> 18 > 6-16-018-2-01 > 26 > 8-28-019-4-01 > 24 > 9-28-0111-7-01 > 14 > 11-21-0112-12-01> 12 > 12-24-01Total days spent in hospital for the year> 135Totals days for the year staying out > 23016-17- years old YEAR 2002Hospital Stay'sAmitted_Stayed in_Discharged.1-15-02 > 13 > 1-28-023-1-02 > 14 > 3-15-02Sinus surgery time3-22-02 > 11 > 4-1-024-24-02 > 10 > 5-3-015-31-02 > 20 > 6-19-027-16-02 > 15 > 7-31-028-29-02 > 26 > 9-23-0211-15-02 > 10 > 11-25-0212-10-02 > 20 > 12-30-02Total days spent in hospital for the year> 139Total days spent out of the hospital for the year> 22617-18- years oldYEAR 2003Hospital Stay'sAmitted-stayed in_Discharged.2-10-03 > 11 > 2-21-035-19-03 > 18 > 5-27-036-13-03 > 11 > 6-24-037-25-03 > 18 > 8-118-30-03 > 16 > 9-15-0310-8-03 > 12 > 10-20-0312-8-03 > 14 > 12-22-03Total days spent in hospital for this year> 100 Year 2003 didn't go into as much but hospital stays longer.Total days spent out of hospital for 2003> 26518-years old as of right now ... will turn 19 on 10/2 later this year.Year 2004Hospital Stay'sAmitted_stayed in_Discharged1-25-03 > 15 > 2-9-033-12-03 > 17 > 3-29-034-21-03> ? > ? In the hospital right now.. hoping to go home someday soon...I added all the hospital days I spent in the hospital since 2000 and I got a sad yet, this my reality results....Since June of 2000 I have been in the hospital 474 days ... that's more than 1 year of my life locked up in these white towers of hell...That's 1 full year and 109 days of my life spent in a hospital. And this is only 4 years and counting. This isn't counting how many times I have been in the hospital since. I have been born. I wouldn't want to know the result of those findings. I only get 1 month out of the hospital it seems. I need something to put an end to this hell. I go through.So far for this year it's started off rough. Been going back and forth from the transplant center seeing what they can do for me.As of right now, I'm not on the transplant list as of yet. My next apt. May-20th. I'll see what happens when I go in may. it does see my hospital stays are becoming longer. It's taking longer to recover. Yet, the good point is I always recover and get out. I still respond to treatment. That's one thing the Transplant center looks at. This is my life spent in the hospital. You also have to think that half of those days spent out of the hospital b4 I go into the hospital I was sick. So that means those days healthy were few but, worth the world!Yea, I'm not trying to be depressing just, Setting my facts down in writing so, My time spent in and out don't go unnoticed. You may think this should go unnoticed. That by me writing this down to an exact date makes one know where there life has gone. I seem controlled by my disease. I'm not controlled by it. Yet, I am and don't want to know the truth. I want to live life in an imaginary world and play with my trolls or beanie baby's and watch teenage mutant nija turtles for the rest of my life. I just want others to know how much time I spend in and out of the hospital. The hospital is a part of my life. Just like Port St. Lucie Florida is, I have two home's. My home in psl, Than my Hospital home in west palm. Living in a hospital and coming home is hard. I deal through all of this. Some Cystic's may know what it's like to have two homes. I just know, That maybe a transplant would be a stop to all of these hospital stay's I have.Put an end a hospital and let me live a life.. I don't anything about. But see it and hear all about from my friends whom.. I love so very much.I do live my life and try not to let CF control me yet, it seems I succumb to being control by my own illness.I don't know if they will find a cure for CF in time for me. I don't know if a "CURE" will come in my life time. My damage to my lungs are already done. The scar tissue is formed and sugar levels are high. The bones are aching and the migraines are there. There are so many obstacles that anyone with CF have to overcome and go through. Even if you don't have CF but, know and live with someone who does. They have obstacles just as well.Well, all suffer from CF even if you don't have it. We all suffer when anyone you care about is in pain.I hear people say, CF is a tragic and Sad situation. Yes, it can be. But, you know what. I have friends with CF and us cystic. I believe our some of the only people who can keep a sense of humor when it comes to scary and gross situations. When you cough and fart at the same time.Maybe you're have sinus surgery and when they rip those tampon looking things out of your nose. Or maybe when you cough so much mucus up and than Look at your doctor or nurse or mother and Say GOT MUCUS?Yea it's a cystic thing....That's why I really need to talk to someone who's going through CF problems like I am. Have any of you been in the hospital as much as I?I do my treatments. I have a nurse and Rt. that come to my home. I don't go to school the teacher comes to my home. Never went to high school and never have I found love.I think I have become numb when It comes to someone loving me more than family love.I am just having so many, emotional ups and downs. That I don't know what to do.If anyone wants to give me hey.. please E-mail me atCfkitty101@aol.comMy name is Stephanie and I just want help in some way. B/c I know I can't deal alone. Yet, when I talk to family and friends about. death and my feelings. They get upset and I see them in pain.I think this is a better way to find a person to talk to about my emotions and make life seem more hopeful and not hopeless...
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Ever feel as if.. your cf over comes u and you feel hopeless...
- Thread starter anonymous
- Start date
HEY STEPHANIE,MY NAME IS CHRIS.I'M 36 AND HAVE CF.DON'T GO TO HOSPITALS OR DOCS UNLESS NECESSARY.ALSO HAVE DIABETES AND TAKE SHOTS AND LOTS OF INSULIN BECAUSE I EAT LOTS OF SWEETS.SORRY TO HEAR ABOUT ALL YOUR TROUBLES.IF YOU NEED TO TALK ,LET ME KNOW.KEEP A POSITIVE OUTLOOK PLEASE!!!!!!!!CHRIS
Stephanie: I can understand your anger and sadness. It is very important to be able to express what you feel, and to get outside validation. (in other words,we all need someone to say: you're right to be angry -- you've had a hard time!) A very obvious suggestion: ask your CF center for a referral to a therapist/counselor. As you say, sometimes it is hard to share our sadness and anger with the people who love us, because we don't want to add to their pain. I've found great comfort and validation and ultimately knowledge and insight from working with my therapist. I wish you hope and courage and good luck.
Stephanie, I hope you realize what a strong person you really are. I don't have CF but my fiance does. I am 24 years old and have never had any severe health problems myself. I don't know if I would have the strength to endure everything that you have. You need to remember that even though you have this really crappy disease you are not only the disease. You are a person outside of having CF. I hope you can distract yourself from your sickness to find out who you are. Do you have any special talents; writing, music, listening, people skills??? Whatever your passion is, use it to fight the CF. You will get much further along if you stay positive. I know its hard, almost impossible at times but you can't let the disease win. This may sound like bulls--t but its how I feel. Take advantage of your strength. I wish I could say that I could be as strong as you. I don't know if I could endure everything that you have. YOu have my admiration and respect. I hope you all the best. Good luck with your health. I know that you will be okay. I also know that you will find someone to love and who will love you back. If you ever want to talk my e-mail is ASander6Atampabay.rr.com. By the way I live in FL too.