Skip to main content

Letter from my sister

I didn't want this post to get mixed up in with my other Christmas stuff, because it truly deserves a post of its own.  My 14 year old sister, Callie, wrote the most amazing thing and wrapped it up as my Christmas Present.  She had a school project where she had to write about her most influential person, and she chose me. What? I was flabbergast to say the least.  As I read the title, then began to read on and saw my name...the tears began to flow.  I don't know how I made it through reading it all because the more I read the more I cried.  The sweet words were so pure and heartfelt.  




*Pardon the messy hair, it was Christmas morning...and the puffy eyes, I was crying ;)

Since the picture is hard to read, I had Callie send me it so I could include on my blog:


My Influential Person 
By: Callie Barthelemy
        Checkups, vests, pills, more health precautions everyday.  Caston, enzymes, and more medicine than I can count.  Coughing up mucus, getting winded easily, setbacks that would break down a normal person.  Running 5K’s, taking bike rides, pushing through your disease.  Graduating college, getting married, reaching your 9 year anniversary, living your dreams before it’s too late.  These are things my sister has to go through as I watch her live her life to the fullest while I can’t do anything to make time go any slower.  My sister Dana is 32 years old and is living with Cystic Fibrosis, otherwise known as CF.  It’s a hereditary disorder where your mucus is very thick and it gets into your lungs and other intestines often making it very hard to breathe.  Dana has such a big impact on my life.  I watch her living her life to the fullest, making every day count, and taking every opportunity given to her.  She has the best attitude toward life and takes nothing for granted. If you asked me when I was five years old where I wanted to be when I was 32 I would say some childish thing like I wanted to be a fairy princess, a childish dream that has no real meaning.  But as I’ve grown older and I watch what Dana has gone through, that dream has changed.  
        Having CF means that you have to take care of your body.  This means eating healthy, working out, and doing all of your treatments.  Remember that awful feeling when you’re sick and you won’t stop coughing? My sisters lived with that for the past 32 years.  My sister has a blog called cf stinks and on there she has a bucket list.  Crossed out on there is to run a 5K.  Luckily, I got to do this with her.  I’ve never been a big fan of running but this was something that I would be able to do with her since I don’t see her that often.  So we got up early in the morning and drove to the 5K where a lot of people were preparing for the long run ahead.  I could tell as we drove up that this is what she loved.  We ran and ran so that finally the finish line was near.  When she crossed, I saw that look again.  She knew she had done something great that most people without a disease can’t even do.  I was so proud that I had a sister that can live her dreams, and I was glad that I got to do it with her.  
        CF is a scary thing to live with.  Dana has great opportunities where cameramen follow her around for a day, so others can see the daily life of someone with CF.  At the end of her video, Dana says, “I hope one day there’s a pill that I can take and I won’t have CF anymore and I hope that I can live to see that day.”  I want her to see that day too.  I want her to be healthy and I want her to stay around for a long time.  Her influence on me has been greater than anyone else’s could have ever been.  She teaches me how to love and care for people and she teaches me to never give up. She doesn’t realize she teaches me these lessons of life.  Maybe she doesn’t realize that I cherish every second I’m with her, never knowing if it will be my last.  So if you ask me where I want to be when I’m 32, I’ll tell you that I want to be sitting here, reading this with my healthy 50 year old sister Dana.  


I wish I had the words to express what she means to me.  All I can say is, I can't wait to sit down with her when she is 32 and read it together :)  Love you, Cal!!!

Comments

Popular posts from this blog

SmartVest Review & CF Appointment

Well, here is the long awaited official review of my new SmartVest SQL.  I don't have any current or updated vests to compare this too, so my feed back is based upon what I like/dislike versus the old and out-dated vest.

Pros:
Weight - it is MUCH lighter than my ancient Hilrom Vest.  By all means, it isn't light but definitely a great improvement from my older model.  I can at least carry it myself!Comfort of vest - the fabric is much softer and less scratchy when wearing it.Technology - it has a digital screen, so I can set the time and know for sure how long I'm using it (the old one had a knob to turn).  Also, I can set different programs based on how long I want to use it, etc.  It's quieter!!  Will still doesn't enjoy watching TV with me while I vest, but I don't have to turn the TV to its max volume!  And, the dogs aren't scared of this one as much!There is only 1 hose...so I'm not tangled up :)And it comes with a rolling case (that looks like a re…

CF Updates

Greetings friends!

I had the pleasure of going to my quarterly CF appointment on Tuesday.  It was originally scheduled for 11/15 but being that my sinus funk is still lingering around, I wanted to move it up a bit.  (the original funk started here)

I finished my round of Cipro on 10/29.  And still had a head full of congestion, sore throat and ears. Bummer.  I thought I was starting to feel better for a split second, but it didn't last.  Thankfully, my lungs were still feeling good :)  We were at our cabin in WV that weekend and I skipped my vest and HTS, but thankfully didn't suffer.

So, I headed in to the doc on Tuesday.  My PFTs are holding stable so that makes me happy!  More on that in a minute.  During my exam, she could see there was still fluid in my ears along with my red throat.  Plus my face was super puffy and my eyes felt as if they were going to pop out of my head.

So, the plan of attack is this:

1) Take Levaquin 750mg for 14 days
2) Get back on my Claritin dail…

Feeling Good Guilt

Having Cystic Fibrosis is not something that consciously crosses my mind on a daily basis.  I take pills and do breathing treatments throughout my day, but I just do them out of habit.  I don't sit down to eat a meal and say, "oh, I have CF, I better take my enzymes".  Instead, I just subconsciously walk to the cabinet and pull out the bottle, or if I'm out to eat, I reach in my purse and grab them.  It's just like brushing my teeth before bed every night.

While I know I have a disease that is incurable.  I find myself just living life and doing the many things that I want to do.  While this seems well and good, it's also unfair.  There are other CFers fighting for their last breath, waiting for a second chance at life with a lung transplant, or being hooked up to an oxygen tank and dragging it with them wherever they go.

I often tell people that I am a bad example of CF.  When explaining CF to someone, I talk about the deterioration of the lungs, challenge…