Cystic Fibrosis is probably one of the hardest diseases I know of. It is the number one disease in the US that kills children. There is only a 50% chance that people with CF will live to the age of 37. If children go undiagnosed by the age of two, then they will most likely not live to see their preteen years.
All of these statistics are hard to read, but to me the hardest part of CF is the CANT'S. Yes even harder than the daily fight that CFers go through. Even harder than the hours of treatments, hundreds of pills, tens of thousands of dollars in medical bills each year, and weeks of hospitalizations each year.
THE CANT'S ARE SOOOO HARD ON EVERYONE!
* Lexi can not have an indoor pet, no dogs, cats, fish, bunnies, hamsters...ext.
* We can not spend an extended period of time at a home that has an indoor pet. When it is unavoidable like b/day parties, I am on her like a hawk. Making sure she doesn't put her hands in her face and washes her hands before she eats or drinks. We can't tell folks not to have indoor pets and we hate to alienate her from everyone, but immediate family members that we would visit a lot can not have them at all. Not even for short periods of time.
* We can not have any carpet especially in Lexi's room. She does not need to spend the night at a home where there is wall to wall carpet in the bedroom.
* We have to have allergen covers on our pillows and mattresses.
* She will never be able to go to a bonfire, or roast marshmallows over a camp fire.
* She can not be outside while people are grilling, unless the grill is far..far away and you can not smell the smoke.
* She will never be able to plant flowers or a garden.
* We can not have any indoor plants.
* We have to have a whole house filtration/purification system to remove any bacteria from the water.
* She can't enjoy a hot tub.
* She can't mow grass or be outside when someone is mowing grass. Imagine how hard this is living in a neighborhood. Seems like someone is always mowing.
* We can't be around cigarette smoke at all. This is easier now b/c there is no smoking in public facilities in NC, but we still have problems at outside public places. Seems like every time we go to the pool, someone is always smoking around us...uugghh.
* She can't be around 1st, 2nd, or 3rd hand smoke. The first 2 are obvious, but we just recently learned about 3rd hand smoke. It is the carcinogens and harmful debris left on smokers clothes, hair, and in their homes. So no hugs if you smoke and have not showered:(
* Lexi can not clean...no vacuuming or sweeping b/c of the dust that is stirred up. No mopping, tub cleaning, or toilet cleaning b/c of the chemicals used. She can not even wash dishes or a car unless an unscented detergent is used.
* She can't be outside in the pollen or when it is dry and dusty.
* The heat makes it hard for her to breath and can cause her airways to close.
* She can not swim in lakes or ponds.
* We have to be very, very careful when swimming in public or private pools to make sure there is no bacteria or fungal growth and that the chlorine level is accurate.
* No one around Lexi can wear fragrances. This is very, very hard! Probably the hardest part, b/c these days all hygiene products have fragrances. Her caregivers, friends, and teachers that will be in close contact have to wear/use unscented everything. Fragrance free soap, deodorant, hair spray, hair mousse/gel, lotion, clothes detergent and fabric softener, and as lightly scented shampoo as possible (can't find unscented that works or that would be used too).
* We can not use any scented laundry detergent or fabric softener.
* We can not go in a home where they have used Fabreze, air fresheners, plug-ins, candles, warmers, ect. And this is really hard b/c you have to remove these things weeks to months to get the smell out of your home and fabrics. Sometimes longer if you have used a lot of fragrances like Yankee or Scentsy. This has lost us a lot of invites, b/c most people want their homes to smell nice...and well we just can't go!
* Lexi will never be able to use Bath and Body Works, wear perfume, wash with nice smelling hair/body products. This as a girl will be brutal.
* There are lots of stores that we can not go to b/c of their fragrances. One that we love, love, love is Cracker Barrel. We were letting her wear a mask until we entered the restaurant side, but even a mask could not remove all of the fragrance. :( We have also had to turn around and leave stores before b/c of the smell.
* I can't use most cleaning products. I do still use some chemicals in the bathroom to remove mold/mildew, but I have to wait until she is asleep. I close her door and leave the fan on for hours and know she will not enter that room for at least 6-8 hours.
* We have to be persistent about hand washing and sanitizing.
* We make waitresses re clean our table while I watch.
* I am the runny nose detective during cold/flu season. Big family get togethers are very hard on us. Everyone is rarely well all at the same time. Is is fair for us not to go or them not to come????
* We are careful not to wear our shoes all over the house, b/c of the germs they carry.
* Gas powered four wheelers, golf carts, scooters can be harmful. We try to eliminate these, but sometimes it is hard. Those times we wear a mask.
* Nail polishing is a careful ritual. We have to go outside, it has to be a breezy day to diffuse the fumes, and Lexi has to wear a mask. Not too fun then, huh!
* There can be no visible mold or mildew in our home. I know that sounds like it would be gross, but look around your tub or shower door. There is mold there unless you clean almost daily. This takes a great toll on me. I clean 1 bathroom every night, so that means my bathrooms and kitchen sink are cleaned at least every other day.
* I have to vacuum my wood floors everyday to remove dust. I mop them a couple times a week. I have to dust 2-3 times a week, clean my bathrooms every other day, spray my sink and counter tops daily, spray Lysol on phones, remotes, door knobs, toys, couches, light switches, ect on a weekly basis (again all while Lexi sleep b/c of the fumes)
* Lexi has to be careful about markers, paint, glue, and any other art supplies that have an odor.
* She can't use some make up and lip glosses b/c of the fragrance.
* She can't have toys that smell.
There are more, but I am tired and you get the point. This is so hard. I mean, how do you tell your child that they can't go, or do this, or come inside there is smoke... And how do you tell your friends and family to abide by these rules?
WHAT WOULD YOU DO?
Some might say, let her live her life and be a child. Don't be over protective. Oh, and my favorite one is....you can't protect her from everything forever. But how can you willingly let your child do something that is going to ultimately lessen her life span. Can you sit by and watch knowing... Please let me know... I struggle with this part of the disease more so than the med schedule. It has literally made me OCD!
