Thursday, March 10, 2016

It's Hard to Stay Alive (Fragile, yet Strong)

Putting my sneakers on:

Sorry, I haven't posted in a couple weeks! I have been pretty busy with work, which is GREAT! It's nice to see my client list build and to actually get a paycheck! YAY! The first paycheck I received was from my 1st closing! YAY! (check HERE to see the picture)

Since the last post, I've been really focusing on life. Yep, life. Just living. It can be hard work sometimes. I work, keep the house clean, maintain health, and even try to work out! But it's hard. These new kicks I got help motivate me though.

Rock' em CF sends out new kicks to CFers that want to work out/jog/ and get in shape! I just filled out a form, had my doctor sign it, sent it off, and BAM- my new kicks arrived! Thanks Emily!

Fragile, but Strong...

Which is perfect timing, because I want to get stronger. Working out will help me gain muscle and improve my lung function. Win-win! This really helps strengthen my health, which is super important!

As I get older, it gets harder and harder. More nebulizers, more vest treatments, more sick days, bones tired, joints hurting. I may only be 30, but my body is a lot older than that physically speaking.

Some days it's hard to do even stairs, both lung and joint wise. Having Cystic Fibrosis can be exhausting.  So finding time to work out is difficult. I try to hit a certain number of steps daily with my fitbit and calorie count to gain weight. I do a dance workout maybe 2x a week. But's its tough finding time and energy. Energy is key.

The older I get, the harder just living gets. I don't mean normal living like keeping up with bills, etc. But just staying alive in general. I don't mean this to sound harsh or scary by any means. But, I have to work hard to stay alive. I wake up 2-2.5 hours before work or my first appointment of the day, just to do my nebs. I do nebs again in the middle of my day for an hour, then again for 1.5 hours at night. I try to eat over 3,000 calories a day to keep up my energy, and have to drink constantly, so I don't dehydrate. Overall, I've got it worked out so it doesn't stop me from working or enjoying dinner time (Andrew & I's favorite part of the day), but there isn't much extra/ or free time.

It takes some scheduling and planning, but is it doable with effort and work. What makes it harder are the "sick days." Days where my breathing is wheezy and I can tell I need extra treatments. Or days where my arthritis is flared up and I can't move around much. The not-so-fun days are the GI problems days. Having bathroom issues is never fun. So for every 5 good days, I usually have 1 bad day during the week. A day where I'm so run down, I plan not to leave my house. I do light cleaning and stuff, but otherwise just focus on meds and food! Plus, I nap a lot those days. I do try to be in bed asleep for 10 hours a night. But sometimes I need a catch up day.

10 hours that's a lot. I know, I sound pretty lucky. To be honest though, I could sleep a solid 10 and my husband sleeps 5 and he has more energy than me. While we are sleeping our body heals, well my body has lots to heal. Also, on an average night it takes me an hour to fall asleep, I wake up 5-7 times, and according to my fitbit I'm "restless at least 25-30 times" a night.  My fitbit sleep bar looks crazy. The longest solid sleep period between bars(awake or restless) is never more than 2 hours... I just never get solid sleep.

My coughing does wake me up and I do cough during my sleep.

This is just a normal night/ day in my shoes. Add in when I get infections or a cold. A single cold or virus can kill my lung function and I end up in the hospital. I have really been struggling more and more the last couple years with bouncing back after these instances. I'm allergic to all antibiotics that can be given orally, I didn't repsond to IVs last time. So nebs, that's it. That's all I got to fight back with. I do so many, I need to save the few I don't do every day for when I  need to fight infections. Our bodies start to build resistance to nebs we do all the time and therefore, don't help me when I have an infection. But the scary part is... besides the nebs I normally do, only  ONE other neb is used to treat my psudeomonas (which is the bug I culture, that I have to keep suppressed as much as possible). I'm running out of options for when I get sick. So there will come a time, when I can't bounce back. Which means I have to try super hard to not get sick and take care of myself. I want to push that day as far into my future as possible.

 It's really hard and a lot to wrap my head around. It takes a lot of patience (which I struggle with- you all know) and lots of scheduling, but I love my life so much, it is completely worth it. But I want everyone to be aware of what it is like. I think people who don't know about CF, may not know what we go though. I also, sometimes think those near to us, forget how rough CF life is (family & friends- in general). Most people always see me smiling and enjoying life and forget sometimes how hard and frustrating my life can be most days.

THIS is WHY I'm sooo passionate about Great Strides and fundraising!!!!

I struggle to work, I struggle doing laundry, I struggle carrying groceries, I struggle knowing I can't have kids, I struggle knowing I may not bounce back healthwise in the future, I struggle realizing I may need new lungs someday, I struggle with staying alive...   I don't want others to struggle, I want future generations to live longer, enjoy life more, and have more opportunities!

I WANT TO MAKE A DIFFERENCE!
Help me make a difference!

I'm walking at several location this year and really want my walk in Princeton, IL to succeed!!!

CLICK HERE for LINKS to donate or sign up!!!

I'm nervous we don't have many signed up on my team for Dekalb,Quad Cities,or Champaign yet!

And I'd love to add a few more teams to Princeton's Walk! We have a few past teams that haven't signed up yet.  I'm still looking for raffle and lunch donations too (Princeton and Champaign)! Contact me on Facebook or email me if you can help!

I've seen so many friends struggle and lose their lives. I'm not just walking for my future, but for all CF patients! We can make a difference, just by donating, or walking and fundraising (no cost to you)!

Help me change future CF patients lives!!! Please :-)





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