I as knowledge, that I should keep up with this blog more. 

In recent news, I am still more or less a wandering nomad in Georgia and despite being here for almost nine months, I have not leased an apartment. I have been fortunate enough to live off the kindness of my neighbors who let me stay with them for various amounts of time, a month, six months, 2 months… I should think more about laying routes, but more and more I realize I am a family girl. It breaks my heart to not be near my parents and be a part of their lives. They’ve been my only constant in life, no home has ever been permanent.

I’m not sure what my priority is, or what I am actually doing. But I’m still moving so that’s good. 

For the last nine months probably more Pseudomoas has been growing in my body, and we realize Tobi was no longer kicking its but. This the process to get Cayston ensued. Now that I finally have it I am a firm believer in it. In less than 24 hours I have less mucus production and don’t feel as crummy. I’m not wheezing and I’m breathing easy. I’m so thankful this medicine has worked for me. 

The only annoying part is the cleaning. No one got time for that. But since it works so magically I’m making time.

Whew. Praying for all my CFers & their families today. Love you mucho.

Sleepless Nights

For the past week and a half I had been struggling getting a full nights sleep. Nothing seemed to help the drowsiness leave my body. Not 12 hours of sleep, not a coffee, nothing. 

I was constantly distracted, I couldn’t focus. I had a headache that would not end. I made an appointment to see my doctor and he prescribed me an antibiotic. And when I picked it up there was also a steroid. 

“Great, I am really gonna kick this off my body!”

Now, I lie awake begging for sleep to come knowing tomorrow will be such a full day. But I know it won’t. Sleep won’t come for four more days. Not until I have completed the steroid will I be able to slumber. 

I know I need it. I know I need the antibiotic. This was no cry wolf to the doctors. Something is/was attacking my body. I had to be seen. My lung function fell five percent. Not a big worry, but the sleep. That’s the worry. When you lose it it’s the straw that breaks the camels back. When I am not getting energized from sleep the weight disappears, my blood sugar levels become erratic and my body shuts down. 

Now, what I wouldn’t give to start the steroid on Monday and actually sleep this weekend. As the steroid surges through my body I get hot flashes and dizzy and starved for water and can not sleep. 

This will end, I know. But I wish it only for the end of my life. Not at 23.  Not today. Not tonight. Good night.

Happy to announce

I have been PICC line free for the past four hours! Praise! 

Learned something interesting today. FEV does not tell you how well your lungs are personally functioning. WHAT. The doctor tried to explain how FEV1 really works, and that its a measure of you against your peers. It’s not that I’m doing a % better than them, but 93% of my peers have my lung function or worse and can force the same or lower amount of air out of their lungs than me. I think. Gee. Cystic Fibrosis! And I thought there wasn’t more to learn!

I’m happy that my brother who often has low function doesn’t mean his lungs are only functioning at 42%. That would really stink. 

Okay enough talk. 

Fev1: 93%

Goal: 104%

Bottom line: WHEN YOUR PICCLINE IS OUT YOU ARE FREE. 

Amen!

Disruption

We interurpt this post for a pee break.

Actually, it’s mostly just my sleep it disrupts. As a young twenty-something I have to use the bathroom tops four times a day. Healthy? Don’t know, don’t care. But when I am on an IV I use the bathroom upwards of ten times.

DANG IT, HOW CAN ANYONE DO THIS JOB AND STILL HAVE A JOB?

Seriously! I am on five IV rounds a day right now of 100ml each. Two of them run into my veins in thirty minutes, and then three are slowly dripped over the course of an hour. It would be nice if the IVs were the only added thing to my day, but they’re not. There’s six more pee breaks I have to take, there’s the added liter of water I have to drink due to dehydration, but my bladder is so full? Of salt. And then there is the side effects of five rounds of antibiotics in a day. 

America should give more sick leave. But I didn’t take any. At all because, I can’t afford it. I have student loans, had to buy a car, have many car related payments… There’s more I am forgetting. Thankfully I don’t have children or I would probably leave them at the play ground. (This would be awful! But I wouldn’t blame a momma for losing her wits every once in a while! Y’all are moms (and dads) you have to remember for so many people!).

I didn’t take sick leave, because I would rather be normal, I don’t want special treatment, but I can’t lift more than 10lbs right now so if everyone could please open all the doors that are heavy, I would be incredibly thankful!

There are so many nuisances, disruptions, living semi-independently is hard. (I live with a friend of my family, but we don’t interact much…) I can still drive with my left arm, I can still get my own 3am IV and not snooze the alarm, I can still do my laundry, and feed myself. 

Can we talk about those people who can’t for a second? I am incredibly thankful I can, and am abled(noun), so that I can take care of myself. But those who have to humble themselves and let others dote on them hand and foot, that takes some real strength in this day when independence is praised so loudly and the family is cast aside for individuality. 

You are amazing. 

And every care giver who anticipates the needs of the dependent, and who works relentlessly to make sure needs are met, you are amazing. 

People like you are such a beautiful disruption to society that remind us we all need to be humble. Thank you for your love. 

In conclusion, we need more disruptions in our day to remind us to not just think about our own lives. There are so many lives! And every one is incredibly important. 

Did anyone see the picture of the doctor who broke down after losing his 19 year old patient? It brought me to tears. I thought of my doctors, and thier reaction to my death one day (I cried).

I realize now that’s a side effect of Cystic Fibrosis, and I pray I will outlive them. I’ve always been so narrow with my life, I have made all the plans, I have written a will, it’s always been when I die young, and never if. 

All those care givers, your heart beat is the strongest we will know.

Love, 

All of the Dependents

Three Weeks

Two weeks ago I participated in a half marathon, I didn’t get a PR, or set any records. I didn’t run the whole time, and I didn’t hurt the whole time just at the end a whole lot. But dang it! I went 13.1 miles and didn’t stop to catch my breath!

On the flip side… Tomorrow, I am going to get hospitalized. My lung function hasn’t improved despite running 13.1 miles two weeks ago. Infact it’s gone down 5% since my last CF appointment three weeks ago. Which is just a, “dang, that stinks.”

As I have gotten older I feel like my CF is less predictable. Any other CFers or CF lovies feel this way?

Can I get an AMEN?

I need to work harder, I’m not doing everything I can. There’s more that can be done for better results. 

Cystic Fibrosis is one big go big or go home. I’m going to the hospital so I can go home for the rest of my life.  

No Rest For The Weary

That’s right. There is zero. 

When you have a genetic disease that affects your entire body, lots of things go wrong all the time. When you are the child of two parents with random medical problems on top of it, you’re basically a walking nightmare. 

Someone should probably put me in a bubble, a tinted one specifically. 

I am prone to sunburn (a curse of the French Canadian), likely to have weird complications from everything bad that happens, and most recently have ocular migraines. 

I have had tiny ocular migraines in the past, flashing of dots, zigs and zags across my vision, never any pain. Until now. 

I was at work today and stood up from my computer on my way to Mass. All of a sudden my eyes had a flash shadow in them. Like I had just been photographed. 

“Well, that’s a weird sensation,” I thought aloud to my coworkers. They didn’t seem to notice. The shadow of the flash stayed for five minutes and then my upper vision blurred. 

I was going to be the reader for Mass so I went to in hoping it would go away. I went to read and could barely read the page. I had to look at the top of the page to see the bottom, “why was this happened?” That was humbling. 

I walked out of mass to make a doctors appointment. My coworker made me come back to sit in with Jesus the rest of mass. That’s when the headache came on. As I was driving to my appointment in the sun it got way worse. I started crying so hard, my make up streamed all the way down my face too! I called my old neighbor to see if she could drive me the rest of the way. Her dad, Joe did. Such a God send. I got to close my eyes the rest of the way. My headache didn’t break until after I saw the doctor. He muttered, “severe ocular migraine.” He told me to take over the counter pain killers, luckily I had some. 


In all it totally sucked, and it’s likely to happen a million more times. 

But for now it’s over. And that’s what is important. 

Hiccups.

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It’s feeling impossible to take my TOBI Podhaler at the moment! I have hiccups and want to sleep!!!
Yesterday, I ran the Disney Princess Half Marathon. It was awesome.

Finishing time: 3:32

I am proudest about shaving 16 minutes off my time between 15k and the finish line! My boyfriend got text updates every 5K with my expected finish time so he would know when to be there to cheer for me. (I came a little early.) People were getting swept off the course for being too slow! I was told I was 45 seconds away from being cut off if my time didn’t improve. My cousin and I did it together, we walked together until that point and we split up admits the chaos. We were mostly walking by that point. It took everything to finish. I’m so proud of her and how far she has come to finish the race.

Check out my splits! (and the random bit after 13 where I forgot to stop the clock.)

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But now I’m exhausted. The last mile I made a goal to finish before 10AM. I finished officially at 9:59:30.

Never stop fighting.

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