What It Means To Be My Caretaker

"I dont really do that much."

This is what my sister, Sarah, said to me when i was trying to explain to someone how much work she does to help me out and keep me healthy. I couldnt help but just nod and kind of stare at her because i didnt quite know how to tell her that in all of her 28 years shes never been more wrong than she was in that moment.

See last year in the beginning of August my lung collapsed while out at dinner with some friends. She knew what was wrong immediately and insisted we go to the ER when my stubborn self didnt wanna go. Of course we went because shes very persuasive and im glad we did. By the time we got there i was barely breathing and in lots of pain, she stayed in the room and by my side the whole time till they kicked her out because they needed to put a chest tube in. What we didnt know in that moment was that i wouldnt walk out of the hospital until almost Thanksgiving. 

After the first week i was sent to a different hospital to be put on the transplant list as they didnt think that my lungs were good enough to heal this on their own. As i signed all the papers to be put on the list she was handed a paper as well, she was agreeing to be my caregiver through the transplant process and help me afterwards. She was agreeing to drive me to appointments and help make sure my med schedule stayed on track. She was agreeing to help keep my bedroom and living room clean and to help with meals and errands till i was healed. She left her research position and put school on hold and it began.

She next few months she came by a few times a week and took my dirty clothes and brought me new ones, changed my pillow cases because im a diva and insist on having my own pillows and cases in the hospital, she threw me a big party in my hospital room for my 25th! Decorations app trays and all!! She came and slept over and had movie nights with me, she brought the kids to hang out and took walks outside with me. She brought me home cooked food and we ordered pizzas when the hospital food became too much. I wouldnt have been able to handle those 3 months as well as i did without her. 

I was lucky enough to receive an experimental surgery and be fitted with a device that allowed the chest tubes to be removed and i could finally go home, and she didnt skip a beat. I couldnt lift more than a gallon of milk and i was very tired all the time. Getting worn out super easily keeping up with everyday tasks became a chore and a half but she was right there. Laundry was done and meals were made and our home, like usual, was kept super clean. That alone makes a huge difference in my health. To not have dust and germs in my home keeps my lungs clear and my crappy immune system happy.

Today my health is back to normal, my lungs are inflated and i was able to work hard enough that im currently not active on the transplant list (to the surprise of everyone!). She still will make me meals when im not feeling good or pick things up from the store for me. She keeps the house super clean which is a chore in itself. When i have a hard day or my symptoms become too much she listens to me and i can see it in her face that shes genuinely sorry i have to go through this. All of this is more than she had to take on, let alone the fact i live with her and her family. Living alone got too hard for me years ago and i truly believe I would not be as healthy as i am had i never moved in with them. 

All of this plus the million other things she does is what she considers as "not much". However to me its everything. Being my caretaker isnt an easy job. Right now things are good, im healthy as ill ever be and i can babysit and take care of myself for the most part, but i will get sick again. I will be active on that list again, ill need her a lot more than i do right now again. The real kicker here is that im not worried even slightly, because i know for a fact shell be there and that im in the best hands i could ever be in. My sister is more than my caretaker, shes my best friend and i couldnt imagine life without her. Sick life sucks, but with the right people, its also a wonderful life. 

My Illness is Invisible, But I am Not.

This morning i woke up and took the puppy out like every other morning, made a cup of tea to drink while i do my treatments, and got all my meds ready. Suddenly i had a coughing fit and when it was over the tissue i grabbed was filled with bright red blood. Yet i dont panic. I throw it away and i finish strapping on my vest and filling my nebulizer cup with the vial of albuterol i pulled out along with all my other meds and start my treatments with a few extra tissues on hand and an old t shirt so i dont stain my pj tank if i cough more up suddenly. This is my CF life. This is something i dont worry about unless it gets worse. This is just something ill mention at my next appointment, but its no big deal. This is what nobody sees. People look at me and see a fairly normal girl, sure i have oxygen on, but i dont look sick. My face is full and i laugh and smile and run errands and go out with my friends. What they cant see is how hard my heart is working to keep my lungs moving. The strain makes my normal heart rate in the 100s at times. They cant see the build up of secretions making me work for every breath i take. Thick sticky mucus that clogs my airways and chokes me on a daily basis. Strangers on the street dont know that ill spend hours today inhaling medicines and working out my lungs just to stay stable at a measely 28% lung function, they dont know that by the end of the day ill have taken close to 30 pills to maintain my weight, mental stability, vitamin levels, digestion, control pain, and fix various other things that my body cant maintain properly on its own. Yet youd never know. This is where the term invisible illness comes from, There are 30,000 other people with CF in this country going through this similar routine and youd never guess. The things we go through seem impossible to most, yet this is our life. This is normal. Lately ive been really aware of the lack of awareness to invisible illnesses, not just Cystic Fibrosis, but so many others as well. Ive gained friends with struggles youd never know about yet they're barely hanging on. If you take anything away from reading this today its just be aware. Be aware of everyone around you. When you see a young girl park in the handicapped spot your not a hero when you tell her she should be ashamed to take that spot from someone who needs it because she probably needs it more than you know. When you see a man coughing dont assume hes a bag of germs and give him dirty looks his lungs may be doing the best they can. Next time you make fun of someone for being skin and bones because "real women have curves" keep in mind all the women who struggle day in and day out to eat as much as they can but their bodies refuse to take the nutrition they consume. Be aware that these struggles exist and just cause you cant see them doesnt make them non existent. My disease is very real and i feel it every day.

Appointment/Health Update!

Its been a little bit but i hope everyone new year has started off on the right foot so far! Just to update everyone on how im doing I had a doctors appointment today at 3 and it didnt go as well as i hoped but i wasnt admitted so I definitely not complaining. I lost 2 pounds (down to 96 now) and my oxygen levels seem to be staying right around 94 now. My FEV1 was the same 28% as my last appointment and although its disappointing that its not higher im glad it hasnt dropped. The last 2 days ive been coughing up blood as well but its under a couple tablespoons a day so its not a huge concern right now the doctor just said to call him back if it doesnt stop or it gets worse and hell set up an admission right away. Also ive had a bit of a cold for over a month now but since that seems to be clearing up too im not worried :) all in all i think it went okay but it was a pretty disappointing feeling to have worked so hard like i did and still have lost weight and to have my lung function stay the same...i thought for sure id made a difference! This just means i have to work even harder before my next appointment. My weight goal is 100 lbs (i wont be healthy enough for transplant till i can gain and maintain my weight so is really important) and i wanna get my FEV1 up past 30%, its gonna be really difficult and take a lot of time and work to get there but i have an amazing support system full of people who help motivate me and keep me on track and im so thankful for all of them! Heres hoping guys!
xx

Last Post Of The Year!!!

Goal achieved. I was home for Christmas! I wasnt too sure if id be able to stay home for the holidays this year as i came down with a pretty bad cold, sore throat, runny nose, horrible horrible cough, couldnt catch my breath for anything, the whole 9 yards. Its hitting me pretty hard and just tonight my lungs have decided they had enough and have all but given up on me, i have 1 day till NYE and im very determined to make it till the new year at home! I need to tone down my stubborness, im well aware. Im once again hooked up to my oxygen concentrator cause my oxygen levels without it are dropping down to the 88%-89% range (down from 94%-95% last week) and im thinking an admission is inevitable no later than Jan 2....boo. On the bright side i had an incredible week! Christmas Eve at Sarahs was...well...entertaining haha. It was kind of a clusterfuck but hillarious at the same time, i had a great time! Then i slept most of the day on Christmas day then that night Joey came by and we watched a movie. Thursday night we went to dinner and then watched Hot Rod, which is hillarious and one of the best movies ever and he didnt really agree..but then again he likes Adam Sandler over Will Ferrell so Im not gonna read too much into his opinion there haha, Friday he met up with me and Michelle at Tobys and it was a great night and then we put Harry Potter on and were lazy all Saturday morning and went to Maki Sushi tonight :) Definitely the best few days ive had in a while! I havent been so happy in a loooong time! Tomorrow will be spent planning NYE with Allie and sitting veeeery still lol.

                               

me?? oh ya know, 29%. FML.

    WARNING : PITY PARTY ALERT AHEAD!!!
     PROCEED WITH CAUTION!!!
Im excited to start the new year and hope its just as amazing as this one was with him, Allie, Michelle, Sarah, and everyone else who made every day incredible. Im hoping my lungs dont fail me too quickly so i have time to make that happen, and im hoping all the friends ive made in my CF communities are happy and healthy too, it breaks my heart when i log on an almost everyday someone else is gone, someone else lost the battle, and im scared that it might be me next year. The breaths i take are shorter and my heart is beating faster and im tired more than im not, I wanna go out and keep up with everyone but my body wont let me. It makes me sad but not for myself, for Sarah who loves and cares about me more than anyone i know. For my mother who doesnt always know how to be my mother but would be devastated none the less. For my niece who lights up my world and my brother in law who im so glad joined our family! Hes good to Sarah and Gwen and they deserve the best :) Im sad for my best friends who are positive to the point of pure denial. The only person im not sad for is myself because ive had just about enough of not being able to breathe, not sleeping at night, eating all day just to lose more weight in the end, hours of meds and tons of pills, and missing out on life because im so tired i just cant move. Maybe im just having a rough patch...a year long rough patch...and i will fight as hard as i possibly can to the very end but if i should lose, im at the point where im okay with that.  Heres to making the best out of this new year, whatever it should bring, i resolve not to let a single day go by that i didnt make the absolute most out of.