The care and feeding of this sick person

I have been depressed lately because of something that happened recently. So I decided that I needed to write a letter to my friends and family.

Dear friends and family,
This letter is for all of you; but I have two different messages, so there will be two parts. For those of you who support me by sending emails or calling me to check in...for those of you who help raise awareness about cystic fibrosis or walk with me during Great Strides...those of you who fundraise with me or on your own...and the ones who make me laugh when I feel like crying...THANK YOU. I'm not sure if I tell you guys enough; but I appreciate you and your support. It means the world to me and to Frank and Kate. Your encouraging words mean more to me than you know.

For those of you who don't know how to offer support to some one with a disease I have somethings to say. I may not understand what it is like to watch someone you care about get sick over and over, but I do understand what it is like to be that person. Because; I am that person. I need to know that my friends and family have my back. That they are thinking of me, praying for me...I don't expect you to drop everything and focus on me but that you get me. You may not get cystic fibrosis or my mitochondrial disease but that you get *me*. I don't want sympathy; I want a little bit of understanding. I'm about to say things I don't say too often...but I am scared. I'm worried about my future, I'm stressed because I feel like a burden.
I hope I don't sound whiny or needy, but I can only assume since I don't get support from some of you that it is my fault. It is not fair for me to expect you to know what I want or need. So this is me telling you.
-I enjoy spending time with you, I know that you all have busy lives and families. But a phone call or an email is always appreciated. I don't like complaining or dumping my problems on people, but I'll gladly tell you about test results or just talk about the weather. Heck, I'd love to hear about the funny thing that happened on the way to work yesterday.
-I don't want pity, just a little understanding. Have you read about CF? Mitochondrial mutations?
http://www.cff.org/AboutCF/
https://health.google.com/health/ref/Cystic+fibrosis
http://my.clevelandclinic.org/disorders/Mitochondrial_Disease/hic_Mitochondrial_Disease.aspx
When I was 21 an article was written about me:
http://www.ncbi.nlm.nih.gov/pubmed/12400067
(I can even copy the full version if anyone is interested)

-I don't want you to come to the Great Strides walk with your money; I just want to see someone fighting to help cure a disease that will end my life one day. People show up just to walk with Frank, Kate and I.
-I don't want you to come over because I need anything from you, but rather because I *want* to spend time with you. Again; I am about to make reference to something that is not a secret but something that I don't like to think about...
I don't want to die wondering if you knew how I felt or "what if"; I could die before I'm 37. Only 50 percent of us make it farther than that. I know that many of you aren't worried about dying and I probably sound morbid; but the reality is that I am not the healthiest person. Not because I woke up one morning and decided I want to be sick; but because by some cosmic alignment I got CF, two mitochondrial mutations, a thyroid that doesn't work well, and blood that clots fast.

While we are on this subject, I also want to ask you a favor. When you are sick and you need someone to vent too, call me or drop me a line. I can lend a sympathetic ear or maybe give suggestions; but do not tell me that I don't understand. That I just don't get it; because you may not see me wake up in the mornings and cough my head off, many times until I vomit. But I do, You may not see me fall over or run into a wall while I'm trying to walk, and you probably don't have a clue of what is in my medicine cabinet...but trust me...this is real. It is a big deal for me, for my friends and family. Please refrain from telling my husband and daughter that they don't get it either, or that they don't have it tough because they do. More than people realize.

I'm sorry if this sounds selfish or bitchy; that is not my intention. I guess I'm hoping that by admitting to you all that this is what I need; maybe I'll get it from more people. I hope that I offer all of these things, and if I don't...tell me. I will be better.

I'm not speaking for every one with a chronic illness, just for me.

Love,
Chrissy

Just another day...

I haven't updated recently as we have just been supper busy here. I had an NIH appointment, which went well. My FEV was 82% (up from 79%)! I got all my meds refilled and had some bloodwork done. On the muscle front things seems to be getting achey again and weak; just like before. BUT I'm just taking it one day at a time!

A few weeks ago a friend of mine had a Cystic Fibrosis Fundraiser, I was a speaker. I took the time to go over a list of people with CF who had died recently and all of their ages. It's tough when you go over the list, I started crying while reading them. Only a handful were older than me. The sad fact is that the median life expectancy is 37.4 (as of 2008). I usually don't focus on that myself; but it is always in the back of my mind. When I fundraise or try to spread awareness I always add it in and make sure people know it. I want them to know what CF is, what it does and that there is NO CURE. I just want to scream it so that people will donate money to the Cystic Fibrosis Foundation. The foundation supports a lot of research in new medications to help us have a better quality of life and the chance for a cure.

I would be lying if I didn't add in that *I* want a cure. I want to see my daughter graduate and get married... I want the people with CF that I have met online to get better (although a cure would not repair damage already done), I don't want children to suffer...

I have a whole list of other things I want; but a cure, is something patients and families want too. It's what keeps our hope alive.