Sunday, March 27, 2011

For the sake of my heart.

Sometimes I wish there was a way to forget certain things happened, just for the sake of my heart. I know they all taught me VERY valuable lessons. So maybe then I wish there was a way that my heart could forget but my mind keep the lesson. 98% of the time the things of the past don't haunt me, but it's that 2% of the time where something random will make a person, a moment or memory pop in my head first followed by butterflies of that good moment, but quickly covered up by an ache in my heart I just can't describe. A ache of regret, of "stupid brianne you should of seen that coming" but the ache I hate the most is when I begin to doubt any of the good memories were real, and blame myself for everything that followed. Then there I am left in a funk that leaves me over analyzing my life and beating myself up for every stupid mistake I made that left that ache, and just waiting for something to knock some since into me and back into that 98% of the time. So sometimes I wish there was a way to forget in my heart, but NEVER forget the lesson I learned.

Monday, March 21, 2011

Magnigicent Monday

Lately I feel like I've done is complain, so I need to spend sometime showing my appreciation and blessings for everything I have in life that keeps me smiling and pushing forward even when things are rough.

I find myself getting annoyed when people complain about the little things in their life. There are so many of my CF friends, my sister, and myself who are trying to keep a sense of normality in our life while fighting for every breathe, or fighting a staph infection that puts us in the hospital but a normal person wouldn't even know they had. Little kids who will never hear or speak, or little kids that are spending their childhoods in hospitals and not in school. There are parents without jobs, homes being foreclosed on, families having to send their sons and daughters to war zones, and those poor citizens in Japan who have lost everything to a natural disaster.

So when someone is complaining on facebook about having to pull an all nighter cause they procrastinated, or getting a high B on an exam, a bad hair day or a pimple, or having to go to work for a couple hours, or having to go to school. I find myself getting annoyed. Stop to think about those who have lost their hair to chemo and wish they could have a bad hair day. Before you complain after procrastinating and having to stay up all night think about those who can't go to school or wish they could further their education but are to sick to get to campus, or are in the hospital for weeks and months at a time and when they get out they have a couple doctors appointments a week and no time for school. Maybe when you look at the bigger picture a high B is better then withdrawing and putting your dreams on hold. When you complain about having to listen to a boring professor think of those who weren't born with the gift of hearing. Before you complain about going to work think about those who lose sleep at night trying to figure out how they are going to pay their power or buy food, or those who wish they could work and not be such a burden on their family members, but are to sick to hold down a steady job. Instead of fighting with a brother or sister or complaining about a pet peeve or two think about those families whos sons or daughters are fighting in a war zone. Before you complain about not being able to buy that car or take that road trip look at our big house, the cars you already have, the food you have in your kitchen and the clothes you have in your closet then look at pictures of the devastation in Japan, or the stories of those who spend all their money on medical bills, or cant make it to work cause gas costs to much. Then maybe one missed trip to California or not spending that extra money to get your new rims isn't that big of a deal.

Sure I've been sicker in the last few weeks then I ever have been, and I have to move back home so my parents can help me with my health, and I have to withdraw from one semester and put my teaching career on a short pause and take summer make up classes, but I am able to see that there are SO many more that have it worse then me. So instead of taking my frustration out on those that can't seem to see that they have it pretty easy I want to take the time to show my appreciation for everything I have been blessed with in the mist of everything else going on.

1. My family is my backbone. My parents are there no matter what, and sit in the hospital day and night to keep me company when I am sick. My little brother is a goof and can put a smile on my face, and my sister is a best friend I will have for life. My aunts, uncles and cousins have done so much for my family that I don't even know where to begin to thank them. My Grandparents are their for my mom when things become to much and my Grandmother has taught me so much when it comes to helping and loving others. Family parties are the best days of my lives and my cousins are some of my BEST FRIENDS. I would be nothing without there love and support.
2. CysticLife. This website has been the worlds biggest help to me. I have made so many friends that have been in my shoes that have helped me so much the last few weeks when I was stressed and scared for my future. They have become like a second family.
3. I owe my life to my countless doctors that are willing to see me after hours when I know they have other things to do, and are there to advocate for me, show me the latest trials, and help with money when I need it. They taught me everything I need to know to be an independent adult with CF and how to take care of myself.
4. Route 44 Dr. Peppers during happy hour. Nothing solves a problem like a sonic drink.
5. Those friends who have been with me through thick and thin. Not many people have been able to stick around during hospital stays and having to cancel on plans cause I got really sick, but I have a handful that are there to help when I need it, and visit me in the hospital in between there busy schedules, and take me to doctors appointments when I can't get myself there. I also love when I have friends who tell people not to smoke around me cause it hurts my lungs and kicks them out in the cold snow. It puts a smile on my face.
6. The gospel. As much as I've struggled with my faith and dedication I'm trying my very best to choose the right and make the right changes in my life to keep me on the straight and narrow, but even when I am struggling I know my Father in Heaven knows my pain and is there to listen, and I know a blessing from my dad when I'm sick is just as needed as the medications my doctors put me on.

I could go on and on counting all my many blessings, but for now I will stop at six. I just want everyone to stop for a minute and find things that they are thankfully for and to think about those who are less fortunate then themselves and maybe find a way to help some of those who are struggling. Donate old clothes that you really don't wear, instead of spending money on things you really don't need donate it to a foundation, give canned good, or help serve the homeless lunch with a local charity. There is always someone that needs your help. If you take a minute to think about someone other then yourself you are able to more clearly see just how MUCH you really have been blessed with.

Wednesday, March 16, 2011

So many questions but where are all my answers?!

I honestly don't even know where to begin.... So I left off last time talking about the Tygasil and being on Zofran for nausea. Well that's done. The Zofran wasn't working and I was having nausea on top of stomach pains and I lost over 5 lbs from not eating for 4 or 5 days. So they decided to stop the meds after a week and a half and I would be de-accessed for the weekend until I saw my doctor here in vegas. I figured I had 4 days to have some fun until I was hooked up again, well wrong again! For those who don't know I am allergic to a million different medications and they all happen to be some of the best IV medications out there for us CFers. So at my doctors my oxygen was 93-94 which was great to see that it was still hangin in there but then came time for my PFT's.... DUM DUM DUM!!!!! My Fev1 was 42%. Good: They didn't drop any from not being on meds for a few days. Bad: That is still 10% below my base line. So my doctor was looking at my cultures and the medications it's sensitive to and looking at my allergy list and there is nothing. The 2 things I respond best to is IV Tobra and Merrem but I am not growing pseudomonas so he didn't want to put me back on IV's just for the sake of being on them when it won't really treat the staph that I am growing. So now the plan is for me to see an Infectious Disease doctor to see if they can find a combination of medications or if they wanna try one of my medications I had a reaction to again and see what happens. Right now I am on prednisone to help my wheeze and Bactrum to help keep everything at bay and my lung function from dropping even lower. So yes that does sound like a great plan and I am happy with it but I have one BIG problem.....

I go to school in Reno 450 miles away!!

I have already missed about 2 weeks of school, one of which was spent in the hospital. I have worked with all my teachers and had my midterms pushed to the week after spring break. I figured I would have this whole week to play catch up and get ready for school next Monday but that hasn't exactly been possible since I didn't finish the Tygasil and my doctor doesn't know what to put me on so I've been way to sick and exhausted, physically and mentally, to even think about studying and starting the 2 papers I have to write. So I decided it's better to withdraw and keep financial aid for the fall then to fail and loss all the money plus have F's on my transcript. So right now I am trying to decide if I want to withdraw from all 5 classes or if I should keep 1 or 2. In my head there is only one class that I would be able to catch up in, but then we have a problem with me keeping one class. I need to see the ID doctor and I need to see him soon, but that is here in Las Vegas which means I would be missing more classes. I already decided to move back to vegas and transfer schools to save money and be closer to my mom to help when I get this sick, but now I keep thinking I need to come back sooner. I hate the thought of withdrawing. For one, that is thousands of dollars down the drain, and two I don't want people to think I'm lazy, or taking the easy way out or just a flat our failure. My family has been really supportive but that is because they have seen me at my very worst and know how hard I've worked to get where I am today, and friends within the CF community have been supportive because they've been in my shoes before. But what about those friends who know I have CF but don't know much about it, or even what about those friends who have been with me for a few years but still just don't grasp what it's like because the sickest they've ever been is the flu. Unless you've had a terminal illness or have seen someone struggle with is for 20 years it's hard to understand. I don't want them to think "well I saw her yesterday and she looked fine" or "I wish I could be set up with the DRC so when I'm failing classes I can have someone write an excuse for me" those are both examples from real life experiences from when I got sick and failed a class last spring. Most recently I got "Must be nice to be in your pajamas all day" I should of come back with "it must be nice to be able to breath and live your life."

I'm tired. Tired of working so hard just to fail. Tired of doing everything my doctors say just to keep getting sicker and sicker. I'm tired of not looking sick but having to struggle for each breathe. I'm tired of CF getting in my way of following my dreams.

For most of my life CF never got in my way. I did what I wanted when I wanted, 2 weeks on IV's would clear up any infection. I graduated with honors from high school. Last spring semester were my first two F's EVER. This semester I've been to sick to even stand up while showering let alone go to class. I just want to find a medicine that works and get better so I can live MY life the way I want to. I think I'm allowed to be selfish when it comes down to.

For those of you reading this that are blessed to have your health never take for granite a walk around campus, a lecture with a great professor, a deep belly laugh that takes your breathe away, taking a steamy hot shower, a walk to the mail box on a nice day, a night out with friends, a shopping trip with the girls, or even a hard days work to pay the bills because some of can't do those things with such ease. For some of us just walking to the next room in the house leaves you out of breathe and needing to rest.

Enough of my rant.... Now you see my dilemma. I solved my "unable to work saving money dilemma" that is the moving home part but what about my "need to see the ID doctor here in vegas but I am going to school in Reno, but I am to sick to get to class anyways" dilemma. What a crazy few months I've had.

Wednesday, March 9, 2011

I think it's time for an update!

First things first... I'M 20!!! I am no longer a teenager. It is also an accomplishment in the CF world! I had just gotten out of the hospital the day before my birthday so I slept, literally all day then went to dinner with the girls and opened presents.

So lets seee, besides my birthday, what's been going on in the life of Brianne. Well I was sick for a couple weeks but it didn't seem like much but then one Saturday morning I woke up feeling terrible and each day it got progressively worse. I saw my doctor Wednesday and my O2 sats had dropped to 85 and my PFT's had dropped from 51% to 32% so of course I was admitted to the hospital immediately. I knew my numbers were going to turn out that bad. I was at the point where I had to sit down while showering cause I just didn't have the energy, I was out of breath just walking to the kitchen and my finger nails were more purple then they normally are. I didn't mind being admitted at all, because it meant I would have someone there to take care of me, while I couldn't do it for myself, but I was really scared because it was my first time doing it without one of my parents there with me. The first day wasn't to bad but then some of my aunt and uncles chipped in and flew my Momma up to me!! I couldn't of been happier. Having here there to keep my company and to drag my oxygen around when we went on our daily walks was so nice. If I didn't like what I got on my meal tray she'd get me something from the cafeteria and she'd eat my food and if I liked it she'd get herself something.... it was a great system we had going! After 4 days I was able to walk to the starbucks in the hospital with out having to turn up my oxygen and being out of breath and by day 5 I was keeping my 02 sats at 94 with room air so they let me go. My poor nose is still healing from wearing that the oxygen for 4 days. I don't know how some of you guys wear it all the time. Being home is great and I've slept for 2 days basically trying to get ride of my hospital hangover. I've also just decided that Zofran is a miracle drug! I was put on Tygasil for the first time and it was giving me horrible nausea. (I hate being sick to my stomach but not throwing up) I was hoping it would pass but after 4 days I called my doctor. Tonight I had a baby bowl of soup and 2 slices of cheese. That is the most I've eaten in 3 days! Before I was discharged they did a PFT and I blew a 42%. So I'm up 10 but still have 10 to go to get to my baseline. I'm mostly worried about school. I've seriously missed 2 weeks. All but one of my teachers were very cooperative and basically told me not to worry about anything till after spring break. One teacher, however, needed a letter from doctors and the DRC to even consider letting me take a test late. It's all worked out now and I've been able to rest stress free, but now my midterm week is the week after spring break and not this week like everyone else, ugh. College is killing me! Actually no my CF is getting in way of my education. Now, if only I could stay healthy till finals are over in May.

I would also like to say I have the best CF team ever! They helped so much when it came to working with teachers, and they got me a birthday present and a card saying how glad they were that I was not spending my birthday with them hahah They've helped me so much and I don't know where I would be without them these last couple months.

I fly home tomorrow night!! I get to enjoy my spring break with only 3 doctors appointments and 2 IV meds a day... which isn't that bad at all. Normally I much busier on trips home. This time around I get to enjoy time with my family and visited a couple friends. For those in vegas I have some exciting news, but I am going to wait just a little bit longer before I break the news to everyone!