The Joys of having CF

The Joys of having CF

Tuesday, December 9, 2014

Big Changes This Last Year

This past year there have been some big changes. I haven't been as good at updating the blog and for that I apologize. As I reflect on how this last year has gone I should probably give you all some backround information. 

Let's go way back to August 2013:
I had been out of the hospital for a year, done with high school for about a year and a half and I felt really good where I was at health wise, so I decided to try to get a job. I had always been apprehensive because I wasn't sure how my health would handle it. So if anyone knew me they knew that my favorite place ever was Starbucks. The closest one to me was 28 minutes away. Not to bad. I was there quite a bit so some people actually recognized me by face. I applied online, had an interview, and within 2 weeks I had myself a job. I was excited and nervous. But I absolutely adored and LOVED my job. Not many people can actually say they love their job, but I did. I was so proud of myself. This job had many great perks, one of them just happened to be great health insurance, which was a bonus because since I turned 18 I'd been in appeals for my insurance. They claim I'm not sick enough, even though one of my ends cost over $6,000 a month.
Anyways...I was so proud of myself. I had accomplished so much; great job, great co-workers, new friends etc...and I was only 18.

Now let's go to April 2014:
At this point Ive been at Starbucks for 8 months, and still loving it. I've made so many new friends, I couldn't wait to go to work and see the "regulars" everyday, and work in the drive thru(it was my ultimate favorite spot). Even though I worked the morning shift so I had to be to work by 4:30 a.m. to open by 5:00 a.m., which meant me getting up at 2:30 a.m. so I could get my Meds done and leave by 3:30 to get to work on time( I only lived 30 minutes but I liked to show up early).
So at this point I still of course loved my job but was thinking maybe there was something else I could do in my spare time(like I had a lot of that) so I got another very part time job(literally like 8 hours a week) in the same town as I worked and it was after I worked at Starbucks about 2 days a week. Not bad at all, it was a good experience, but just not my fit. 

Fast forward to August 2014:
I hit a huge milestone...this month marked 2 years! hospital free. I was so proud of myself. I was thinking this job thing was a good idea. I decided to put in my notice at my other job, just wasn't for me. My last day was scheduled to be September 8th, 2014. 

September 2014: 
The month that all the craziness started. I could start to feel something wasn't right. I had that feeling of something creeping in my lungs. I put it off for a while then called the doctor. They didn't think it was anything but prescribed 2 different Meds which totaled about 6 pills or more with each dose. Yeah, that wasn't good. The first day I took them(with food) I got so dizzy/lightheaded I got sent home from work. So I had had enough of that, did my research and found someone local who actually dealt with CF(that doesn't happen often). They prescribed a different med, and said see you in a week and if it doesn't work we'll discuss it them. Well it was a little before the time frame and I wasn't feeling better. Mind you, I looked ok, I was able to work, but on the inside my lungs just Hurt. It hurt to take deep breaths. I was able to hide it for quite a while but after a while you can only do so much. I had a follow up appt, and I warned some of my co-workers and boss what may happen. Well at the appointment the decision to be admitted was made. I made my first call to work, and they were great they said don't worry about it just get better. I got admitted, got IV's and started feeling better. I them came home on home IV's with a PICC line(you can see all my hospital updates in previous posts). 

I bet you're all thinking I got better and went back to work end of story. Nope, not even close. So right before all this sick business, and after I left my previous job I actually got another part time job. I promise you I am not a workaholic. This job was at a clothing retail store as a part-time assistant manager. I was excited and knew I'd be good at this job.
Well I had every single intention of going back to work, but at another doctor appointment the dr said to me I needed to consider leaving one job, probably Starbucks because of the early mornings and even though i made sure I got enough sleep my body was still getting run down. I was upset. I was going to have to give up a job I loved, and I didn't want to work another shift, because even though I'm not a morning person, I loved seeing the regulars in the morning. So after lots of talking and contemplating with my parents I decided to leave Starbucks. Writing up my letter of resignation was probably the hardest thing I've had to do. This job meant everything to me. I know it may sound silly but it did. I had a job that I could work with people which I love and yes not everyday was great, but that's what you get when you work with people :) but sometimes as a barista our smile or small talk was the only nice thing that customer may get that day and I strived to try to have each customer leave with a smile, it doesn't always work but that was my goal. It's what I strived to do. I tried to make the customer thee most important priority. 
The day I went in to give my boss my letter was probably the hardest thing I've ever done. When I gave it to my boss, who by the was was great, she always worked with me if I had a dr appt or anything. I couldn't have asked for a better first boss. But the day I gave my notice, I cried, she cried. It was hard!
In my heart I knew it was right, but I didn't want to face reality. I wasn't just leaving a job; I was leaving amazing co-workers, and friends, and since I gave my notice right after my IV was pulled I never got to say goodbye to the "regulars". To say I don't miss this job a small understatement. October 17, 2014 that chapter in my life, my first job, closed.

Fast forward to October & November 2014:
Alright so I quit Starbucks, I now have 1 job. I still have insurance battles, now I don't have insurance through Starbucks(well I have till March), and I have my secondary. Somehow by the grace of God I know everyone will fall into place. 
Now just because my lungs for the most part are better I am now left with side affects I've never had before. I for some silly reason can't drink coffee anymore(I sure hope this comes back eventually), and I'm left with no appetite, all my favorite foods I can't eat, something will look good in the store, and when I go to make it a few days later it makes my stomach flip flop. This is no fun and gets kinda pricey with all the groceries. I'm the last 2 1/2-3 months I've lost 10+ pounds because of it. I've been advised by the CF dietician to try a drink called Kiefer, it has lots of probiotics and their thinking maybe the IV Meds messed with my stomach in a big way and I need to try to replenish good things in my body. I'm praying someday my appetite comes back. We'll see if the drink works. Anyways on a more fun note, 
For my 20th birthday my parents took me back to my most favorite place ever, Beverly Hills, CA. You can read about that in a previous post, but it was awesome. 

This also enters my favorite time of the year, Thanksgiving and Christmas. For thanksgiving we went to my moms side of the family and my dads side. My grandpa came from the nursing home for Thanksgiving. I get so happy when i see him. I miss seeing him almost everyday, I cherish every holiday with him. I love him so much! 

Now this brings me up to December 2014-current:
Currently I'm still at my part time job, I had a doctors appointment a few weeks ago, and it wasn't that good as you probably read in my previous blog post, lung function test is the lowest I've ever had 85%.  Also on the 23rd I heard back from my doctor and my culture came back showing I am now not only growing psudamonas(sp?) but also staff, and stenotrophamonas(sp?). They want me to go back on an antibiotic that makes me sick. So we'll see how this turns out. I'm also now going to physical therapy. The doctor is hoping that maybe by doing different things it could help open my airways and loosen my lungs. I'm excited to see if this helps....

Then it was time for Christmas, my most favorite time of the year. We decorate the house:
We don't go crazy on presents but we each get a few, and some of us are more curious as to what's in the package than others :) 
Then on Christmas Eve I got Bo dressed up: 
He was less than amused, but so cute. 

This year for Christmas we went by family, and just like this year being full of firsts, this was also the first Christmas ever that my wonderful grandpa wasn't there. The nursing home called Christmas morning saying he was sick. To say we all missed him would be an understatement. Our minds I think were on him all day. We're all just praying he kicks whatever bug it is and that he'll be ok, he's strong I know he'll be okay. This just makes us all remember to not take things for granted and spend as much time with family whenever possible. 

Now I bet you're all wondering why I decided to write this post. Well I decided I wanted to inform you on my interesting journey this last year and tell you all the truth. That's what this blog is about, the fun times and the rough times and you know what; life isn't always a bed of roses. Sometimes it's REALLY hard especially when your health creeps up and takes you on an unexpected journey. Sometimes you may have to give things up that you love, but in the long run its the right thing to do. I want to look back on this year as we go into 2015 as a year I learned A Lot, a year my will and strength was tested a lot, a year where I didn't always have control of everything, a year where I truly put everything in God's hands. 
But you know what, I made it. He did not fail me. Everything turned out okay. I am happy and healthy. I am ready to fight off all these bugs in my lungs and have a great new year. I have a God who loves me. I have my faith, which I rely on a lot. I have a family who always has my back and is always there when I need them, and I know I never thank them enough. Yes sometimes we sweat the small stuff, and stress out over things, but at the end of the day nothing else really matters as long as you have your faith and family. 

I know this blog post was extremely long, and maybe it's jumbled, and if it is I apologize, but going into a brand new year I wanted to make sure I had all the facts. Maybe this is more for me in the future, but I also hope that maybe it will help someone along the way. 
I can not wait to see what this year brings. I hope 2015 is the year for big things and is an amazing year. 

I sure hope I made God proud with my decisions, and I hope I can continue to serve him in the way he enables me to, and someday hopefully a very long time from now when God decides it's my time to go, I hope he greets me at the gate and says" well done thy good and faithful servant". 

Happy new year everyone, God Bless.

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