I was recently asked what the hardest part of having CF is. For me, the hardest part is wanting to go out and do all of the things I want to do, but being restricted because the physical energy just isn't there. I could have all the mental ambition in the world, but without the physical part not much can be done.

I wrote a post within the last week about the days I was grateful for. The days I don't experience often. The days I can do what I want to do. Well, these days are the complete opposite, and are what many of my days are like.

On days like this I have to set my alarm a half an hour earlier because it takes me that long to gain the strength to get out of bed. Did I take a shower today? Nope. All I did was throw my hair up in a ponytail, slap on some mascara so I don't look like the walking dead, and jump into some comfy clothes. 

On days like this I have to always be aware of where my rescue inhaler is or if I have extra change for a candy just in case my blood sugar drops unexpectedly.
I have to ask for help to do my laundry because I cannot carry my clothes basket to the washer without gasping and coughing; and forget taking the clothes out of the washer and putting them into the dryer. I'd be sitting there for an hour trying to catch my breath because clothes are so much heavier when they're wet.
The thought of having to climb even the four front steps to get into my house is a terrifying one.

I recently read a blog post dealing with what its like to live with an illness. It helps to explain how it feels to a healthy person. Its called The Spoon Theory. I will link the site here. But if you have 5 or 10 minutes, check it out. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

My Bucket List- 100 To Do's Before I Die

This is my bucket list. 100 different things I want to do before I die. I am working on completing the list and I'm sure I will end up adding more at some point.

1. have a baby
2. get married
3. go skydiving
4. visit all 50 states- in progress
5. take a road trip
6. do something people will remember
7. grow my hair long enough and donate it to Locks of Love- in progress
8. dine at a 5 star resturant
9. get dolled up just to dance in the rain
10. drive through a cornfield in the middle of the night
11. go scuba diving
12. go on a cruise
13. visit the Bahamas/Caribbean
14. get a poem published
15. give motivational speeches
16. go hang gliding
17. go para sailing
18. plant a garden
19. shower in a waterfall
20. learn to drive a clutch-DONE
21. learn to shoot a gun-DONE
22. go hunting
23. experience zero gravity
24. get a tattoo-DONE
    
25. go white water rafting
26. see a cure for Cystic Fibrosis
27. pay for the stranger behind you at the grocery store
28. ride shotgun in a convertable
29. cover someone's car with post-its
30. draw funny faces on all the eggs in the fridge
31. visit Four Corners
32. be someone's inspiration
33. have a photo shoot
34. own a motorcycle
35. send a letter to a soldier
36. watch the sun set on the ocean from the beach
37. go cliff jumping
38. visit the Grand Canyon
39. be in the audience of a Steve Wilkos show
40. write something in wet cement
41. kiss under water
42. be retweeted by someone famous
43. find a four leaf clover
44. go bungee jumping
45. send a letter to a random address and see if they write back
46. win $100 or more on a scratch off
47. make a hand heart with him-DONE
48. go shopping and spend more than $500-DONE
49. throw a drink in someone's face
50. have a paint fight 
51. sleep in the bed of a pick-up truck, under the stars with him
52. visit the bridge in Paris where I can hang a lock with my name and his
53. lay in the road in the middle of the night
54. ride in a limo-DONE
55. smash a pie in someones face
56. donate blood
57. go to a country music festival
58. pay for a strangers gas
59. visit 20 state parks- in progress
60. pick a pumpkin from a pumpkin patch-DONE
61. attack someone with silly string
62. leave an inspirational message on people's cars at Walmart
63. prepare a three course meal for my family
64. be in a play
65. learn to play guitar
66. learn to play piano
67. learn archery-DONE
68. learn how to figure skate
69. earn a black belt-DONE
70. join a church choir
71. take belly dancing lessons
72. ride in a helicopter-DONE
73. ride a machanical bull
74. take a canopy tour (zip lining through trees)
75. ride the largest roller coaster in America
76. go on a cross-country motorcycle trip
77. go to Mardi Gras
78. see the Northern Lights
79. walk through a rainforest
80. take up photography
81. learn to make pottery
82. learn magic tricks
83. learn how to juggle
84. paint my bedroom blue
85. learn calligraphy- in progress
86. make a scrapbook
87. read 100 novels- in progress
88. graduate high school-DONE
89. get a degree- in progress
90. be in a newspaper-DONE
91. join a big brother, big sister program
92. donate children's books, arts and crafts, and games to a children's hospital
93. write a children's book
94. write my story- in progress
95. spend a week at a spa
96. win big at a casino
97. start a blog-DONE
98. find the love of my life-DONE
99. milk a cow
100. live life to the fullest- in progress

I have so many dreams and hopes for the future, and I used to think because I had CF that I wouldn't be able to do those things; however, I now know I can do what ever I put my mind and heart to. I have CF, CF does NOT and never will have me. My blessings out weigh my problems.

Resolutions, Making Life Beautiful, and Giving Thanks

Yes, I know we are still a little over a month away from New Years, but I want to get a head start on my resolutions that way I can get used to it before the new year, 2014, arrives.

Resolutions:
My first resolution: I NEED to take better care of myself. I need to stay on top of my therapies and medications for sure. I also need to get in tune with my body a bit more. When it says, "I'm tired," I have to listen. I have a tendency to push and push and push until I can no longer push. And I am so blessed to have an amazing man (along with many others) in my life who cares enough to help me stay on track.
My second resolution: I am going to make my life beautiful. I will do my very best not to judge others. Positivity is a huge factor in my physical health. When I feel good mentally, a majority of the time I feel good physically. Taking time for the simple things is something I want to improve on as well: Watching squirrels play, children play, leaves blowing. So from now on, I am going to do everything I can to continue on a positive path.
My third resolution: I want to start doing something to benefit the community. Since I can't work due to frequent hospitalizations and illness, I want to find something that can occupy my time. I do so much better with structure. I want to start volunteering. Animal shelters are at the top of that list. Maybe shelving books at the library or doing projects for the elementary school. There are so many possibilities in the world of volunteering.
My fourth (and final) resolution: I want to be a better person. There is ALWAYS room for improvement there. Kindness goes a long way and it isn't hard at all, yet most of us seem to be too busy with our own self-indulgence to notice that we aren't being who we should. One of my favorite quotes goes like this: "A little spark of kindness can put a colossal burst of sunshine into someone's day."

I know that anyone can leave this earth at any time, whether they are ill or not, but I think the outlook of people with a progressive, terminal, or chronic illness is different than those who are "healthy." I am currently working on my bucket list (which I am going to try to post on here soon). There are so many AMAZING things in this world and I am going to do as many of the 100 things on that list as I can before my time here is up. I used to think that because of my Cystic Fibrosis I couldn't do many of the things I dreamed of doing, but I realize that is in no way true.

A Short Update

PFTs today showed some improvement, although not as much as I would have liked to see. At least we are going in the right direction. I was transferred to TCU(Transitional Care Unit) today because I am not "sick enough" to be in the hospital.

I was lucky enough last night to get a visit from my brother, Lucas, his girlfriend, Bri, and my friend, Dan. We had fun and shared some good laughs with each other. I feel so blessed to have Lucas as my brother. I know I can go to him with anything. And he can come to me with anything.

Mom was also down yesterday morning with Nick, my older brother, and Tiffany, Nick's friend. I spent a majority of our visit helping Nick with his Algebra homework and playing with Buddy, our family's dog.

I am excited about Thursday. Its Thanksgiving and Dan, his parents, and Isaiah are all coming down to visit me! If I could I would skip tomorrow and go straight to Thursday.

I hope you all have a wonderful night and I will post again soon!

Thankful For Days Like These :)

I am so thankful for days like these. These are days I don’t need to fret about where I put my rescue inhaler. These are days I can laugh without coughing until I vomit. I can walk up my four front steps without having to take a break. I am able to go to the store and not have to wait for a closer parking spot. These are the days I can play with my little sisters, days I can goof around with my brothers. I am not constantly thinking about where the nearest bathroom is just in case I need to throw up my lunch. On days like these, I don’t get people telling me I look tired or asking me if I need to sit down for a while. I don’t have strangers coming up to me asking if I need a cough drop or telling me I should stay home with a “cold like that.” I have energy and ambition to do things. I don’t wake up gasping for breath all night or wake up the entire household with my coughing fits. These are the days that I don't need to ask others for help. I don't have to worry about overdoing it.

So many people take so much for granted. Most don’t give a second thought to some of the things I think about every second. They don't have to force 4000 calories down their throat just to maintain their already low weight. They don’t need to think about where they’re going to do their next vest therapy when they’re out and about. The thought of having to take 50 plus pills everyday has never been through their mind. They don’t spend weeks or months in the hospital away from family, friends, and pets. And there’s no thought of IVs, oxygen, feeding tubes, needles, toxic medication, or surgery.

Life is beautiful. Enjoy it. Don’t take what you have for granted. Don’t ignore the blessings in your life. There are people who would do nearly anything to live a healthy life. These kinds of days are days that I don’t get to experience all that often, but even in the middle of a bad day, a rough week, or a difficult month I am still blessed to have amazing people in my life who care so much about me. Without them, I don’t know if I could keep such a positive outlook. Yes, I do have my negative moments, but someone always knows just what to say or do to help me pick myself back up, dust off the dirt, and get going again.

Being sick doesn’t have to control your life, but that doesn't mean you can't or shouldn't have a bad day. Lord knows I have them more often than I'd like; however, it is the attitude that you have through these hard times that matters. Always remember blessings are greater than struggles. Be thankful for the good things in your life and pray for resolution for the difficult things.

I hope everyone has an amazing day today! 

Did You Say Crazy?

Got a little behind on updating again. (Sorry) 

My last update was in August when I was having major hemoptysis, which has now resolved. Since then life has been kind of hectic in both good and not so good ways. Unfortunately, I am no longer engaged. And, I'm sorry, but I won't go into detail out of respect. I am quite happy that I have been able to spend more time with my brother, Lucas, since the break up. I have not been able to bond much with him the past few years as we've both been kind of busy with our own things so being able to sit and talk to him and just hang out is something I've been treasuring. (He even let me drive his diesel, 6-speed truck!)

This past week has been kind of difficult. The 20th was one year since my beautiful grandma received her angel wings and yesterday would have been her 71st birthday. I am so thankful to have my own personal angel looking out for me.

I am currently in the hospital. I was admitted via ER with chest tightness, shortness of breath, and low O2. Tomorrow will one week. Doctors are suspicious of a new bug growing in my lungs, called Mycobacterium, because of something they saw on my chest CT. Now we're just waiting for the cultures to come back. 

I will try to get back on and update more soon. I have visitors coming so I need to get ready. :) I hope you all have an incredible day!

Bleeding Lungs and Puppy-Dog Tongues

The past few weeks have been a challenge for me. I've been having major hemoptysis (coughing up blood) and I have needed more blood transfusions. Currently my docs are trying to let the antibiotics kick in to hopefully eliminate the bleeding.

My blood pressures have been running pretty low because of all the bleeding which is causing me to be light headed even sitting down. I'm also needing more oxygen because I am struggling for air quite a bit. 

They also put me on vitamin K and a high dose of IV steroids daily. Because of the steroids, my blood sugars have been running extremely high so they've had to put me on an insulin drip which means they are checking my blood sugar every hour. I'm pretty sure I won't be able to use my fingertips soon because they will be so sore from all the pokes. 

To add to my already complicated list of problems, I now, again, have to worry about blood clots. Since my last ultrasound, about a month ago, I have made two new clots. Which means that I am forming them without any kind of IV access and that is even more dangerous. 

Tomorrow, I am scheduled with Interventional Radiology to have a BAE (Bronchial Artery Embolization) since we've been waiting so long for the hemoptysis to stop on its own and hasn't. 

I got a lovely visit from my family and Mr. Buddy Bones (our Shih-tzu) yesterday. He was a bum the entire time he was here. All he did was sleep on dad's lap...  He did pull my IV pole for me though when I walked to the tunnel with my family before they left. 

Justin also spent the night with me this weekend.
Other than all of that, I can't think of anything else to say. If I find out anything else, I will try to update again! Until next time, farewell!

Colorful Pictures, Mismatched Socks, and Fuzzy Blankets

Hey! I'm just bored... So, I thought I would make a new blog posting.

Random information: I think its funny that the first things people ALWAYS comment on when they come into my room are the pictures I draw, my mismatched socks, and my fuzzy purple blanket. 

When I am in the hospital, I love to draw and write quotes and sayings and draw little doodles. It helps me to stay positive and helps the room to feel more like its my own. I seriously bring an entire suitcase full of artsy things to do while I am in the hospital. 
One thing that really helps me stay upbeat when I am having a rough day is making a picture with the names of everyone that inspires me or everything I am thankful for. Sometimes I just want to give up fighting, but I will NEVER do that. Every time I feel like I can't do it anymore I look at my left ring finger and see my beautiful engagement ring. Or think about my future children.
Tomorrow is PFT day. If my numbers have increased then I can go home on Tuesday! So, please, keep praying for good numbers! I've been in the hospital about as long as I can stand to be. This current stay has probably been the one I've struggled the most with. It's been a little bit harder to keep my positive attitude up, but I am still doing it! I refuse to let my illness define me and rule me. 
We'll it is close to midnight. I'm off to bed. Goodnight all!

Dinner of Champions...

I've been at TCU since Friday afternoon. So far, I still don't like it, but its not horrible. I will have PFTs tomorrow and as long as my numbers haven't gone down, I can go home on Tuesday. 

Even though it has been a difficult eight months, dealing with the GI bleed and low PFTs, I am so thankful to have all the support from family and friends, even some people I don't know. No prayer or words of kindness go unappreciated. Each one has a special meaning and they are so much more valuable than anything someone could physically give me. 

I would not be able to do any of this if it weren't for having God in my life. When I was younger, I believed in God one hundred percent, but going to through much of the things I've experienced, I was tested in my faith and after I got a lot of thoughts sorted out, I began on my journey to find Him once again. The Lord is definitely my savior. I know He has been the one to guide me through the hardships and trials in the past eight months, and even before that when I was struggling with my faith. I also know, He has been there for every triumph and accomplishment and that He is the reason I could achieve them. 

Since I've been sick, I've not had an appetite at all. I will go 24+ hours without eating anything. I do have my tube feedings running continuously, but I only get 750 calories a day from that. I am supposed to have a minimum of 2500 cal/day, but if I eat when I feel like this, I just end up vomiting right away. My tube feeding rates are also up as high as I can tolerate them. 
I have been able to, at least, maintain my weight. Granted, it is not where my team wants me to be at, but thinking positively, I am not losing. 

Now, I mustache you a question. How long do you think you could be in the hospital before you go insane? 
I think I have finally lost it. In the past 8 months, I have been hospitalized for about 6 of those months. It's pretty sad when you have been in the hospital so much that you can just say, "I'm used to it..." I try to keep a positive attitude and a smile on my face, which I feel have done a pretty darn good job of, but on occasion I have breakdowns/cry sessions. And I am 100% ok with that. I've learned from past experience that holding it all inside will lead to feeling worse because you stuff it and pack it until there's no more room to stuff it and when it gets too full, it bursts. 

                 Over the course of 8 months, I have had over 80 peripheral IVs and over 120 lab draws. My arms and hands are so bruised it hurts when anyone touches them. I would be thrilled if I could get a PICC line right now... Well, I hope you all have a great day! Be careful if you are in the areas affected by severe thunderstorms or tornadoes! 

Swallowing Anxiety

Sorry, I've been slacking on updates. Since Monday, I've had PFTs twice. Thursday's numbers were the same as

Monday's. So I am hoping and praying that I have not plateaued here. I still need to gain another 10% to reach my baseline.
I want to tell everyone who has been supporting me this whole time that I am so thankful for all the prayers and encouragement. It means so much and it helps get through the rough days; much like today.
Today, I am being sent to the Transitional Care Unit (TCU) to finish out my three week course of IV antibiotics. I would normally finish up at home with a PICC line, but because of my GI bleed, I can't be put on anticoagulation that I need for the clotting issues I have when I get lines.
I've been to TCU only once before and I did not like it. I really can't put a finger on why; I just know, it is not a place I want to go back to. At first mention of going, I felt my anxiety level shoot through the roof and I broke down and cried. I am still extremely anxious about going. My transport will be here in about twenty minutes. And as the clock ticks, my mind is filling itself with dread. I know I'll be fine, but for whatever reason, I am absolutely stressed out about this...
I am hoping I won't have to be there too long. I have PFTs again on Monday. If those number show improvement, I will be able to go home Tuesday. So, I am keeping my fingers crossed and praying hard for God to help me with strength and the ability to stay on the up and up.
I've been struggling lately with my depression and borderline personality (BPD) because of everything that has been going on with my health and other personal things. For those of you who don't know, I struggled a lot with depression, anxiety, BPD, PTSD, suicidal tendencies, self injury, and eating disorder throughout my teenage years. I went to treatment 8 times from ages 14-18. I am currently almost two and a half years cut-free. This is a huge accomplishment for me. I used to self harm multiple times a day, so I never thought that I could find the strength to stop completely. I am even more proud of myself because during the past 8 months, things have been pretty difficult in my personal life, but I have managed to find something to hold on to and that something has gotten me through it all withOUT hurting myself.

Well, time to go... Transport is here. I'll try updating later. :)

I Lost Count.... (And Started Counting Again!)

It's been a long few days for me. I've had a ton of lab draws. So far they've taken 24 tubes of blood and  still counting. They're testing for different things that could be the cause of all of my bleeding and clotting. I now have another blood clot in my left shoulder/neck area which the hematology doctors are kind of concerned about and want to put me on anticoagulation, but since my GI bleed has decided to become worse they can't do anything right now. 
I ended up needing another blood transfusion on Thursday night. My hemoglobin has been steadily dropping for the two days before. Tuesday I was 9.4, Wednesday I was 8.6, and Thursday morning I was 8.0. My ten o'clock labs included another check and at that time I dropped to 7.4. I've been pretty wiped out for the past few days. I am contributing most of that to being anemic. 

Friday, I am had yet another scope. My doctors thought that it may be helpful because I am bleeding more than I have in the past. They hoped to find something that will help them to figure out this bleeding issue. I don't even remember what number this one is. I have had so many scopes that I've lost count. The worst part of it all is getting the GoLYTELY while prepping for the scope. The YouTube video above is about a colonoscopy and GoLYTELY. I thought it was funny so I shared it. After my scope on Friday, I ended up having a really large bleed so I had another emergency scope to see if the bleed could be located. A small area that MAY be the cause of bleeding was found; however, the doctors have to wait to talk to IR (Interventional Radiology) to see if anything can be done about it from their involvement. So, hopefully, we will find out today! I also had a CT scan done on Saturday, which did not show anything different.

So far my lung function has been getting better. My PFTs show some good improvement, but it's hard because symptomatically, I don't feel much better. I am still on O2 about half the time. Usually at night and anytime I am up walking around. My sats run 93-95% on 2.5L.
Lately, I have been having low blood pressures. This is probably what is causing my lightheadedness and dizziness. My lowest so far has been 86/42 and that's while I was up in bed  after I had just come back from the bathroom. My highest recent BP was right after a vest treatment and that was only 101/56.
I have finally stopped running fevers. For a while I was having fevers daily, often times above 102. So, I am thankful that those have subsided.

My brother, Lucas, and I about 4-5 years ago. 

Other news: In a little less than a month, I will turn the BIG 21! Often times people are celebrating being able to buy and consume alcoholic beverages; however, for me, that is not the case! I will be celebrating because I have seen another birthday and I have hit another milestone. I am STILL kicking some CF ass! I will never let it beat me! And I will never give up because someday, I want a family. I want to have babies and be there to see them grow up.
My baby brother also just had his birthday, yesterday. So happy birthday, brother! I can't believe you are already 19! It's so weird to think that not so long ago we were racing your hot wheels cars down the kitchen floor. I really miss the times we used to share together.

I guess that is about all I have for you guys. I'll update again when I get anything new!

Another Round...

Well, I am back in the hospital. Low lung function and GI bleed again. I also have a blood clot in my left shoulder/neck area. They're hoping it will dissolve itself with the help of a warm pack since blood thinners are not an option at this time.
I am currently on O2 constantly as my sats drop into the low to mid 80s on room air. My heart rate has been pretty high, enough to make the nurses and doctor a little concerned. I did have PFTs on Monday which were slightly better than they were upon admission. 
I am being treated with four antibiotics, two IV and two oral. I'm also on continuous tube feedings with a protein bolus several times a day. I was on an insulin drip for a few days due to my body not responding well to insulin because of the rapid decline in PFTs. Other than that, there's not much new with my health or medical care.

I am so excited that in one month and three days, I will be 21! Not because I can go out drinking because I really don't find it all that fun, but because I have hit another milestone! Doctor told my parents I wouldn't see the age of 12 and I did. 16, I surpassed. 18, yeah I made it. Now, I will reach 21! I thank God everyday for giving me the will to fight, even when I felt hopeless. I also thank Him for giving me an INCREDIBLE support system to stand and fight with me when I feel too weak to do it on my own. 

Well, that's all the updates I have right now! I'll let you know if anything changes!

Faith is here!

OK... Soooo, I know I've been awful about keeping you all updated. Here's the last three weeks worth! I was admitted to the hospital via ER Sunday, April 28. During my stay I had another major GI bleed which led to yet another scope and capsule study, but this time they actually found something and were able to clip it and cauterize it! For the past four days, my hemoglobin has remained stable! I hope and pray that this is the end of the bleeding! Today, I am being discharged from my three week hospital stay. While in, I received antibiotics for extremely low PFTs, the lowest I've ever been. Amazingly, I was able to go above and beyond my baseline and goal yesterday when I had a repeat PFT! Words cannot even begin to describe how blessed I am! So many of you are the reasons I have fought this long, difficult battle and you will continue to be the reason I keep fighting. Yes, sometime I want to give up, lay down my weapons and wave my surrender flag, but I know so many people are praying for me and supporting me throughout my trials and triumphs. Most of all, I know GOD and my guardian angel are guiding me and showing me the way. I have made a promise to myself, my friends, my family, my future husband, and the child/children I've not yet been blessed with that I would never give up! No matter how tired I get, I WILL keep fighting. I will fight as long as it takes to be granted my miracle cure! I have faith and hope that someday, in my lifetime, God will answer my prayers, but should that not be his plan, I will graciously accept and follow Him in whatever direction he wants me to go.
I am going to try to update more often as I love sharing my triumphs with all of you. Your encouragement means everything! Thank you!

At my wits end....

This last month has been a difficult one. Between my tummy issues, my rapidly declining lung function, and various other personal/family issues I have really been tested emotionally. I have been visiting the Mayo for the past month. They've done several different tests/procedures to try and figure out what's going on in this belly of mine. An MRE showed an area of Intussusception in my small bowel which led to a balloon assisted endoscopy. The scope was done on Tuesday and I am currently waiting for results.

My lung function is definitely suffering from all this GI stuff as well since vesting is pretty painful. I saw 23% FEV1 about two weeks ago; this was an all time low. I've managed to get my numbers back up to 34% as of one week ago.

Is an answer too much ask for? I just want this all fixed!

Hopeless...

Hey everyone... I know its been a while since I've last updated, so I am very sorry about that! It's been a long, difficult past 4 months. I've been in the hospital more than out; 2.5 months of the past 4 have been spent sitting in a hospital bed with a GI bleed. I was just admitted again last night to the U of MN for several reasons. I have not been able to do any airway clearance due to abdominal pain and nausea/vomiting. I've hardly been able to keep anything down; whether its water, juice, or soft foods. Dehydration is also a factor.

I feel like my doctors don't care at all. I was told to stay out of the ER at my last clinic appointment and that I would just have to learn to live with my symptoms. They are refusing to give any pain or nausea medications because "they will shorten my life." I would rather feel better for a shorter amount of time then be miserable for longer. I've never been as angry with doctors as I am right now! It feels like they just don't want to try to figure out the problem anymore, which is doing nothing for my mental health.

Because of the attitudes that my doctors have, I am starting to not care how much longer I am around. I am more than miserable ALL the time. Nothing I am able to do is working. And the doctors are not doing a single thing about it... I am near tears ALL the time because my abdominal pain is so bad. Every time I vomit or cough the pain doubles. I've tried the only other hospital in MN that treats my issues, but they won't do anything without a referral and my doctors here are taking their sweet time.

I will try my best to keep you updated more and let you know how I am feeling and what is happening.