my 17yr daughter struggles with daily severe depression bought on by stresses due to cf- health problems, constant iv therapies, home nursing 7 hrs/day leaves her extremely isolated. -------------- ----- Cf has contributed to her hiding from the world- she grew up embarrassed that she had cf. She tried her best to keep her secret from the small school she went to. But the more secretive she was the more kids talked and rejected her. As her mom, i tried to convince her to accept who God made her to be with cf and all. There had to be a reason I'd tell her. --------------She always limits herself to become close to one or two people and time after time they get caught up in their 'fun' busy lives and she gets left behind because she cant keep up. -- ------------- Now that she's older her limited friends are into the partying scene -drinking , pot, cigs, and because she is so desparate to fit in she tried all of these things. SELF-MEDICATING she began to love the escape these substances gave her. Wanting to constantly party. Meanwhile her dad, brother and I are flipping out! Ever since she was diagnosed at the age of 5mos we have lived every day of our lives making sacrifices to fight for her health and very survival -------------- As crazy as this sounds as I was partially happy that at least she was experiencing normal teenage stuff. She got her first boyfriend in february and for a brief time she was happy, but we were all worried about what she was doing to her body. --------------- SHE IS MRSA + AND HAS SEVERE DAMGE IN BOTH UPPER LOBES EXTREME BRONCHIECTISIS THROUGHOUT ALL LOBES. SHE IS ON CONSTANT ANTIBIOTICS, ORAL 2 WKS, IV THREE WEEKS, TREATMENT 4-5 DAY, DIABETES, FEEDING TUBE,NIGHTIME DRIP, DUE TO THIS DIFFICULT SCHEDULE SHE HAS A HOME NURSE TO HELP WITH CARE. ------------------In the movie STEEL MAGNOLIAS there was a line that julia roberts character said to her mom about having a baby knowing that it could shorten her own life due to severe diabetes, "I would rather have one day of wonderful than a life full of empty nothing." I thought maybe at least she was finding some happiness, when I would tell her she neede to get out of this partying nonsense because it would most definetly shorten her life she said I was being selfish. ------------------Next chapter: she takes pills,pot and alcohol all at once makes a mistake and cheats on her boyfriend which causes major problems for their already dysfunctional relationship. She cuts her wrists to punish herself for hurting boyfreind, which leads me to look for in-patient psych treatment . -----------------The complexity of her cf care we can not find a medical facility to handle her needs. We tried dallas childrens hospital -MAJOR NIGHTMARE she was in a unit with 90% eating disorder kids, no one there for her to identify with. She was discharged from ther after three days because she began to have a flare up and they freaked out because of the MRSA- which is so annoying because she need the protection from others germs more than them getting what she has. ---------------Which brings up a point about cross contamination-this issue has lead to making cf people even more isolated than many other chronically ill populations. It would be so wonderful for haley to have a relationship with someone with cf, sharing the commonalities of being sick, social problems.etc. Just having friends that could truly identify with what you were going through. They would understand the importance of being there for you when you were down. -------------- Party people are only there for the good times. Haley is finding this out the hard way. Thank God she has seen that drugs and alcohol are self-destructive, by her refusing this lifestyle she has lost her so-called friends. ---------------- She broke up with her problematic boyfriend who was also her best friend and that is causing the most severe depression she has ever experienced. She feels completely empty and lost and is terrifid that she will never find another guy that accepts her with all of her medical problems and bodily gadgets. This has been the most emotionally challenging time for me. ------------- I've learned to handle the physical problems of cf, fighting day to day, but when Haley is so heartbroken and hopeless I feel hopeless as well. -------------This is a long sad story and we are in the midst of a very depressing time. The depression seems to be making her body weaker and she has been having more problems breathing which has landed her back in the hospital on ivs just after getting off and out from the last hospitalization just 3 weeks ago. --------------Her doctors are arranging for her to be seen by the transplant docs in houston, just one more difficult thing to deal with. I"ll have to admit it is difficult sometimes to stay positive and hopeful. I just keep thinking "life sucks then you die." How terrible is that? -------------If anyone has any suggestions for us to find our way out of this rut they would be greatly appreciated. ---------------This reply is to share with you a story that you were not alone in your depression and I'm sure any one suffering with a chronic illness of any kind has similar experiences. --------------What can we do to alert the medical community that these issues are not being addressed. Sure psych docs can prescribe pills but we need resources to help cf families cope with the depression and help us find solutions to make the quality of life better for those fighting the daily battles fof this destructive disease. We need to find a reason to want to survive.
