About Me

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I'm Amber... Born July 15. I was born with a genetic disease called Cystic Fibrosis (CF). CF is a progressive disease of the lungs and also affects the digestive, reproductive, and endocrine systems. All my life I have been a fighter. I've had to fight for something most others don't even think about, to live and breathe from the day I was born. I'm stubborn and I can be a huge handful. I'm very strong willed, but easily pleased. I love putting a smile on peoples' faces and making them laugh. I believe in second, and sometimes third, chances. I wear my heart on my sleeve and I tend to trust too easily. My family and friends mean everything to me. <3  I try hard not to judge people because I hate when others judge me. I am who I am and that's all there is to it, but that doesn't mean I always like who I am...
 

Sunday, June 23, 2013

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! 

Friday, June 21, 2013

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. :)

Monday, June 17, 2013

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!


Wednesday, June 12, 2013

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. 
Speaking of milestones, in about a year, I will be marrying the man I love! We don't have an official date yet, but sometime in June 2014. I am so blessed to have met Justin. He's helped me with so much! Sure, we've had our ups and downs, our fights, and moments when we get on each other's nerves, but we've never gone to bed angry with each other and apologies are always made. 
Wedding planning is quite the task! There are SO many options to choose from and choices to make! It's almost overwhelming, but I love looking at different ideas, colors, and styles! Justin wants to wear camo... Go figure. Haha... I don't know about that, but I told him we'll think of some kind of compromise. Maybe cowboy boots and hat because we're planning a country-ish wedding as we both grew up "country."
Well, that's all the updates I have right now! I'll let you know if anything changes!