Thursday, December 19, 2013
It has been a month (and 1 day) since I got my new bling. And this morning it REALLY hit me. I am able to live now. I am able to have a new life. I can breathe, I can walk, I can live.
I had another doctors appointment on Monday and everything is still going so well. They are still amazed at what I have been able to do. They say I look amazing. They say my lungs look amazing, as a matter of fact all the extra air that surrounded them is now gone. I got all my staples and stitches out now (besides the ones that dissolve...it should take about 2 or 3 months to fully heal.)
My lung function went up 1% HAHA but hey its going the right direction! But the cool thing was when they measure the air I could force out between a certain area, pre transplant I was at 7%...yes that is a 7...and on Monday I was at a 102%!! Imagine that difference, feels amazing. It is also crazy how I can blow out air for more than 10 seconds and am still not entirely out. Before if I could do that for 5 seconds it was a good day and that would still include a minute to catch my breathe. I didn't realize how cruddy my lungs were until now...breathing is a fun thing. It never gets old seeing my oxygen at 99 or 100% either. Still makes me very teary eyed. I can breathe!
Now BLAH I have to gain lots of weight...and good weight. I now only weigh 89.9 lbs and probably look like a skeleton. Eating is getting easier and things are starting to taste normal again so no worries right now, I am getting there. I am going to throw this out there though...I KNOW I AM TOO SKINNY. I KNOW I NEED TO EAT. I KNOW THIS ALL SO PLEASE WHEN YOU SEE ME, I DON'T NEED TO BE REMINDED. All it really does is hurt my feeling a little bit. I eat what I can and am trying to learn a new life style. I will get there so you all need to be as patient as I should be :)
I started Pulm Rehab this week and eeps I have no muscle. I am like a little toddler who just learned how to walk again. Walking up and down stairs is pretty pathetic right now...but funny to watch. Again, I am getting there. Just need to take it a bit slow and really just pace myself.
My medicine is still a little crazy and still adjusting, which makes for a pretty messed up body. I shake now and always have a bad taste in my mouth. But I can breathe. I am looking forward to when things start to become normal and when things can stay the same for awhile. My body really just wants to adjust to all this but doesn't know how. I try and tell myself this was a pretty big surgery and its only been a month...but that whole healthy girl inside really wants to bust out!!!
Jeremy is doing really well, and has had 1 afternoon and 1 evening off of Cassie duty (thanks Ape and Connie for taking me out...) and enjoyed time to relax and not have to worry about anything but taking care of himself. This made me pretty happy to know he got some him time (he gets more tomorrow because I am getting my nails done for Christmas WOO HOO!) He has been so good throughout this whole thing. Amazing!
Laila is still doing well too. We got to FaceTime her the other day and after 4 weeks I finally got to see her sweet little face. I tell you what, it was the best feeling. That little girl was all smiles and questions. She wanted to show me everything and tell my everything...she was so excited she even told me a present Angie bought me....ooopps!! She is being super spoiled and calls about 4 times a day. Her phrase is, "I'm waiting to long for you to come here..." And all I can do is agree, it seems like its been forever since I have seen or hugged her (great now I am crying...) I just miss her so much. I am trying to remember that this is whats best. I can heal longer, get in a routine, rest, and she can have a wonderful Christmas filled with everything she deserves!! Its just hard when you as a Mom (and Dad) have to miss it.
Still healing and still praying!!!
Tuesday, December 10, 2013
Today was my first pot transplant doctors appointment and it went so well. I am not used to going into the doctor and getting good news. Guess I am going to have to get used to it!
We had to be in Madison (about 1.5 hours away) by 8 am this morning. But once Jeremy woke me up I had no problem moving and busting a move to make sure I got there. I was pretty excited because I got everything done I needed to do in the morning before I move on with my daily life (temp, blood pressure, meds, nebs, spiro, pep...) and we were out the door. We were a little late because of traffic but psh that was the worst thing that happened all day!
I got my labs drawn and since they had to remove my port I need to get poked with a needle everytime now. They can't use my right arm due to the blood clot so they are very limited in spots to pick from elbow down on my left arm. Needless to say my veins are getting bruised and I have been poked more than once in one sitting and am really starting to hate getting my blood drawn. But I got Michelle, who was a wizard and got an awesome vein right away and I felt NOTHING. A miracle I tell you!
Then off to chest xray, no big deal as long as the picture comes back with everything still in place and doing what it suppose to do. And of course, no junk in the shiny new gift. And since I can still feel a rattle I was worried that maybe there would be too much fluid and I may need an extra chest tube to drain it. But the good news is that it came back and everything looks beautiful, my donors lung, MY LUNGS, are beautiful. A way I have never heard the things in my body that are suppose to bring air in and out called, but now the lungs that sit there are BEAUTIFUL.
My PFTS were great too. As you can see by the picture they are already at a 53% and thats not even the full shebang yet! I have to admit when I blew that 53 I began to cry because I was jut so overwhelmed with joy. A little over 3 weeks ago I was lucky to hit in the 20s, and now on a day that my lungs are still learning how to work, I can blow a 53%. A 53 PERCENT!!!!!! Ahhhh! Crazy awesome.
The 6 minute walk was just as wonderful. I started off with my oxygen at a 100% and walked the 6 minutes with a 100% the entire time and finished with a rest result of, yeap you guessed it, a 100%!! YOU CAN"T GET BETTER THAN 100%!
I saw my PA, my new DR, and my coordinator and each said I was doing unbelievable. That I looked amazing, sounded amazing, numbers for everything was AMAZING! A girl could get used to hearing that about her new gift, they are AMAZING. And if all that good news wasn't enough...I got my stitches from my chest tubes removed AND half my staples (I had a total of 58!) It just means I am healing well, and my site looks amazing. They are thinking of taking the rest of the staples out next week, which would mean the stitches left over would jut need to dissolve. YEAH WOO!
My skin is still very sensitive, but Tiffany jut reassured me its because all the nerves that got cut and hacked are starting to grow back making it uber sensitive. And thank to my Mom and her sensitive skin, it also mean I have to watch what I wear...my shirt yesterday burned on my skin, especially where the seams where. So I pretty much live in the same shirt or the same blanket everyday. I am also on some anxiety medication now, because I can't sleep too well and then my brain starts to race. But it will all be worth it...because I can breathe in clean fresh air.
One smiley transplant patient tonight!
Saturday, December 7, 2013
We got to come home!
We have been home since Friday night and boy does it feel good. Surreal, but good. The very hard part is over and we are home to start the next chapter in the long book of transplant living. My own bed and blankets felt so good last night. I have crashed like 4 times today because I was so relaxed and happy to be home.
The first full day was a success! Now we just have to organize my life a little bit and set up a "transplant" section in our house and we will be all set. I guess Target is calling my name...better answer (who could stay away from Target!) Thanks to my family and Jeremy's (Beth and April too) for cleaning our house and getting things ready for us while we were in the joint. It was beyond nice to come back to a clean house and painted room. It was a huge weight off the ol' shoulders to come in to all that.
It has been nice to eat when and what I want (for the most part since I have to watch my sugars!) and to rest, walk, talk, really WHATEVER I want to do when I want to. I even got to shower in my own shower and the best was worshiping at church tonight! It was great being back!!
There was much to come home to! The mail had been piling up and we have had such a good time going through all the well wish cards as well as the start of the Christmas ones too. It was also fun to come home and get a present from Jeremy...look at that shirt, pretty sure I am going to rock that one quite a bit!
So for the next few weeks I am ordered to walk, sleep and eat. Literally, that is what the Drs ordered. Therefore that is what I will be doing....that and going to all my Dr appointments in the next couple weeks.
I love to be able to cross this number off my list: #88. Get out of the hospital after the transplant
Thursday, December 5, 2013
This is just a small little post to make it an official cross off on the 100 things list! I did it. I crossed off one of the most important things on that ever shrinking list!! And in order to do so (since I am not quite ready to write my story...) I am going to share a few pictures from my adventures.
This is a picture of me as soon as we got into the car on Sunday about 5:15. Phone in hand letting everyone know it was another GO. Hooked up to the current antibiotics that I was doing. I think you can tell that I was excited and scared and just not real sure. We were sitting at home thinking of where to go to dinner (because I didn't feel well enough to cook or clean after!) It was a relaxing day...well, WAS a relaxing day!
Here I am after my last shower for the next 2 weeks. I had to use special soap on my chest. I gave it one more good scrub and kissed my skin goodbye. I was waiting for my NA to come braid my hair so it would be out of my face post transplant. My nurse Kyle told me that was such a girl thing to do. HA I just thought it was smart...and I stand by that!!!
Here I am coming back from the 2nd time in the OR (yeap you read that right...I went back in to get reopened...) I am till hooked up to lots of wires and tubes and had no clue what was going on!! Jeremy told me I looked at ease. Thanks to the vent for helping my new lungs get a kick start...but my little body would be able to work them on my own soon. LOOK AT ALL THOSE WIRES AND TUBES...you can't even seen them all!
Up and walking! They got me and my IVs and 5 chest tubes, packed me up and sent me on a walk. Luckily I had some good support from the wheelchair, my goofy dad, mom ad aunt. They look pretty good in yellow don't they?! I walked at least 4 times a day while I was in...and every one felt better and was easier!
Thumbs up for getting the big IV line in my neck out! Another thing gone...more freedom! I got a blood in my arm so they wanted everything near the clot out. It felt good to have it out though. (You can tell I am a super fruit loop in this picture!)
HAPPY THANKSGIVING! This may not have been the meal people dream of, but to me it was a dream come true! My in-laws came and eat our "hospital thanksgiving" meal together. Turkey, mashed potato, gravy, pumpkin pie. It wasn't bad!! I got dressed up that day with a gown that was given to me in memory of another Cyster. I even fixed my hair and everything. It must have been a holiday!
I AM TUBE FREE! I just had all my chest tubes removed and was the first time I was able to unhook from my iv. I took advantage of it and went for a walk all by myself (until Jeremy found me!) I was starting to feel like a person again (at least a little bit.) I am rocking my MTJM sweatshirt and the pretty slippers Angie bought me. Remember, if I am gonna look bad, I am not gonna look bad. (I will have more pics of my hospital gowns soon...)
The night before we got to bust out of B4/5. I had to wait at least 48 hours after my lat chest tube was taken out to shower or consider leaving. So my in-laws pent the night in Madison and played games with us all night. The girls rocked and we won a bunch (hence the point to the cribbage board score.)
These are the pictures I had so far to show a bit of my journey. Just a little glimpse of the 2 weeks we lived in B4/564 in order to cross off #50. Get a lung transplant!
Wednesday, December 4, 2013
It has been nice to be outside of the hospital and into hotel living. No surprise, but they were right when they said that life would start out rocky and be consumed by transplant things at first. Take meds, eat, rest, control pain, repeat. May not sound that big of a deal, but when you are on a schedule and need things done 4 times a day....it seems like thats all you do. Luckily, cell phones come with alarms and I have Jeremy to help with everything.
Things that I know soon enough will only take my 30 minutes in the morning and at night time take me about an hour now because I am so new and uncertain about each step. I can't wait til I can do everything like a boss again. I have gained so many new medications the last 2 weeks that it can seem a little intense...I just have to get used to do all this because I am healthy versus all the old things because I am sick. So what if I have to swallow 8 hand fulls off pills a day..they are going to keep me alive and breathing.
Pain and anxiety come and go. It is crazy...things like my long hair touching the skin on my back can make me cringe. My back freaks out, my legs are swollen and sore, the fog the oxy leaves me in isn't fun. But again, luckily I have Jeremy to help with so much of all that...and hasn't complained once. He for sure has had a ton he could too...heck, I peed on the poor guy. What a rock!
Breathing: this subject will change over time...as I learn how to breathe and cough and use all the bling these lung have. I am asked often what it feels like, all I can really say is CRAZY! Clean air goes in and even though it may not be deep yet and I still have junk to clean out of the lungs, the air I do have is just so easily placed all over. I am not out of breathe when I walk, as a matter of fact I did my 6 minute walk and did nothing less than a 98% on oxygen...and that was me walking by myself on my own 2 feet as quick as my chubby weak little legs would let me. I can do things without having to rest for more oxygen or because I need to catch my breathe or cough. That is just crazy. I am VERY weepy when I talk about the breathing part. Especially because I know it will only get better!
Blood sugar and insulin on the other hand have me working hard. I am not a good carb counter I guess, but will for sure get better at it and the more I get used to it the more I will eat etc. I am not used to and do not like the fact that I can't jut eat a little here or there or whatever. This is something I know will just take me some time. I can do this. I can do this. I can do this.
I am bruised up pretty badly and they are so nasty thanks to the blood thinner, but I am hoping this will only be for a few months and that all can get back to more of a normal thing. My clam incision looks really clean, sore, but clean. And the "holes" from the chest tubes are the same way. When I get a glimpse of it in the mirror it actually makes me a little woozy! EESH! I think just because it is on my body, but ouch and ick. I for sure can't wait until that is all healed.
I keep getting excited because I DID IT. I got my transplant and the surgery and hospital stay are over. The worst physical part is coming to a slow down...but now comes all the mental parts. It is a good thing I got new lungs because I know I am going to need to do some deep breathing on this one. Dear Lord, again wrap me in your arms and carry me to a state of constant sanity.
Here is to day 2 of a free transplant patient over. I will mark it as a success!!
Saturday, November 30, 2013
So this is what breathing feels like.
New lungs. My new lungs. My shiny, blinged out, healthy, perfect NEW lungs.
I have so much to be thankful for this season. I have a new life to be thankful for. And even though at the moment I am still in this hard journey, and its quite the fight, I am thankful that I have this fight to do now. I have this beautiful gift, somebody else gave me a chance to be a mom, wife, daughter, sister, etc. again. I have a donor family that no matter if I ever hear from them or not, they are a part of my family. I literally carry there loved one next to my heart everyday. They gave me this new fresh air and lease on what I know will be a fabulous life.
Sorry it has been so log since I blogged, I am sure you can imagine between the emotions, drugs, and all that I have to do to stay fit in here...the time just hasn't been there. (Although I feel a few would have liked it a little more if I would have updated when I was a super fruit-loopy.) I thought that my dry run was an awesome story, but this one is a true fairy tale. I have found my fairy tale. The days have been filled with tears, laughs, food, insulin, trying to cough, chest tubes, fat legs, blood cots, walks and yes even a nail polish change. I will make sure I write down my story in the next week (with Jeremys help...I missed a good 36 hours in there someplace.) but for now I wanted to say how lucky and loved I feel. It is very overwhelming. It was so awesome to call back to Michigan on Thanksgiving to hear everyone with such a happy heart, it got me so choked up that I couldn't talk anymore.
I do feel like a minor pin cushion and get excited the more and more that things come off and out of my body. If you have never had chest tubes, please say a little prayer of thanksgiving right now. They don't just hurt your chest, they hurt your body. But as of this afternoon I am chest tube free. Which also means in 48 hours I can take my first shower since that Sunday night...as I am sure you can assume, it is well over due. Just another memory to write down...sponge baths. Never again. I will never complain about wanting or needing or being able to be clean again. I for sure went into this with the thoughts of..if you are gonna look bad you arent gonna look bad. So Thanks to Aunt Gwynn I have beautiful gowns. And thanks to a wonderful friend through Team Cassie I had a very special one I wore on Thanksgiving in memory of another Cyster gone too soon. My nails are done, my slippers are cute, my hair is rocking a headband, and my cheeks have tons of color in them now. I am a brand new girl.
I gained 20lbs in water weight, but carry nothing above the thighs...you can imagine 20 lb legs and feet, right? One day I will for sure laugh at the little sausages on the ends of my feet. My arm is finally down from the blood clot swelling. I have no more heart monitor. 1 PICC. 0 tubes. The list could go on. This warrior is fighting strong and I am no question about it...through all this pain/hassle/blah, I would sign up and do it all over again. There are a few things that will forever stick out in my memory bank...1 being Laila telling the cashier at the store that I got new lungs. My baby is so excited for me (and herself!) that listening to her happiness was well worth the things I will miss while staying strong in the beginning of this battle.
I want to once again send my thanks for everything you all have done for me and my family. For the thoughts, kind words, donations, prayers, cards, whatever it was...we thank you and appreciate it. We thank our donor and family of course too. Without them, we wouldn't have had this awesome reason to celebrate. I am sure there emotions are still running just as high as our are, just in a totally different way.
Now it is time to go strengthen my new gift....my lungs! I remembering how to breathe!!
Sunday, November 17, 2013
This is what I think my new lungs will look like!!!!
As most of you know by now...I GOT MY CALL! I am currently sitting in Madison hooked up to a few machines just waiting for an operating room to open up. This seems to be a forever wait.
We got the call about 4:30 and I saw that special word and just looked at Jeremy and said something that I can't believe I said. HAHA...oops. But Kelly my coordinator was on the other end just waiting to give me the good news. And boy was it good news, I had a set of lungs and they weren't even high risk.
I said my goodbyes to Laila (again this is something you can NOT be ready for...still not sure I was/am ready for it.) But she was such an amazing girl full of smiles and running around the house saying I was getting new lungs and was going to be able to run with her. Sweet cheeks, I sure hope you are right.
I am calm. I am scared. I am excited. I cry. I am hungry and thirsty. I am anxious. I am impatient. I am tired. I am overwhelmed with love. I am overwhelmed with thinking if this is real life. I am obviously so many things all wrapped into one.
For those people who have asked YES my nails were polished, but I took them off once I got here so they could monitor me better. But my toes still aren't painted, so on the way out the door I said WAIT and went back to grab a bottle of polish so I could get them done this week. But maybe will have Jeremy bring me a happier color...I wasn't thinking how sad the color I brought was!
I didn't cry much on the way up here this time, and really I can say that for some reason I have stayed rather calm this whole time. Granted, yes, my emotions come in full force and I let it out in a cry and an apology to Jeremy. But I pray, I look at my Breathe Smile Breathe bracelet, and I remember why the heck I am here...to gain a new life.
We are long at another 3 hour wait and I have already slept for an hour, that should tell you either how calm I am or how exhausted I am. I got a small nap in today. But sadly I didn't eat much and was about to get ready to go out to eat when m y phone rang. So I am hungry and very thirsty and a big glass of cool apple juice sounds so wonderful. I know exactly what my first wish will be for when I wake up and can drink something.
Jeremy and I have talked about all the little miracles that have happened this past week that was just perfect for a set up for the day (minus your ouchie MOM!) and thank the Lord that things are working out so far. Lets just hope this time when I wake up from the meds there will be new shiny lungs in me and a thumbs up from Jeremy and my Dad. I have already started a nice list of all the good coming from this...you know because a new life with new lungs isn't enough HAHA. But here are some good things I came up with: I will get to drink 2% milk now, I will get my GTube out soon, I will get to go back to MI to see family more often, I will be feeling pretty good for Christmas, I will push Laila on the swing, I will get to walk the Great Strides this May. These are just a few guys!!
I am also thinking about as happy as my friends and family are, somebody elses family and friends are mourning right now. They lost a loved one. They are overwhelmed and have mixed emotions for a totally different reason then we do. Please keep them in your prayers too. And thank God that a family gave such a precious gift to me and others.
Thank you all for the TONS of support I have had already on FB and texts these past few hours. I do plan on writing back and I want to thank all you personally, but right now the emotions have me and I can't sort fast enough. Hope you all understand! Next time I write I will hopefully, God willingly, have these new set of perfect lungs that will easily be able to push air in and out with no real effort.
I am now going to relax and try to get another round of some sleep.
My biggest battle is about to begin.
Dear Lord, please wrap me in your arms.
Thursday, November 14, 2013
As a kid, I never remember my parents need to sit down and explain what it was that made me different. They never said or did things that made me dwell on the fact that I was different. They were some kick butt parents and even though I am not sure at the time they knew it or not...they were doing the perfect thing for me, and for them. They were being stronger than the CF.
My mom, Jan, my comforter:
She never let me see her cry about my CF (so far I have only seen in twice in my life and they both have happened this year!) but she has seen and heard me cry, well, too many times to count. She is the person I call when I just need to vent out how sick I am of being sick. About how frustrated I am with everything that is going on, how I hate my port, how eating makes me want to throw up, how my skin broke out in a new rash, how the antibiotics are making me feel cruddy. She lends me her ear and just lets me know that she can understand how sick I am of all of it. Now that I am a mother I can not imagine the things she has had to endure with my (here is that nasty word) terminal illness. Think for a moment that you have a baby who is frustrated, hurting, screaming and literally wasting away to nothing and trying to just figure out a way to make her happy. Imagine watching your little girl have surgery at 6 for the first of many. Imagine watching your teenage daughter not grow properly. Imagine watching your adult daughter wait for lungs, which is the only chance she has to live longer...and you can do nothing for her but pray. Imagine that as a mother.
She always made sure things were a little special and also told me, "if you have to deal with the bad might as well get some good too." So on days that I would go to the doctors she would take me over to Grandmas for lunch and to watch the Price is Right before I had to go to school. After my first GTube, I didn't want to leave the house because I was in pain. So she told me that if I walked with my back straight in the mall she would buy me some new nail polish (Yes, it did work because the obsession with my nails started at a young age...I got purple and gold from bath and body works!) She would play Super Nintendo with me while I did my vest, just so the time would fly by. She would encourage me to talk about it in college and do many reports about it to help with my grades (it worked for ANY class in college...) She just always looked at the good things to come out of it. She still does.
Because of her being a mother who was scared, it has really made me be OK and WANT TO tell other mothers and fathers about my story. To show them that there is hope. I wasn't suppose to make it past 12 let alone graduate, get married and have a baby. There is hope for little ones with CF and although, yes, it is TERMINAL...it doesn't mean that is a death sentence as soon as you hear the words Cystic Fibrosis. You can still live and have a purpose, a great purpose. Heck, like I said this CF life made a new healthy lfie, and I can't even begin to explain how important that was to me for sooooo many reasons.
My Dad, Greg (Ed...hehe), my rock:
Now I have N.E.V.E.R seen my dad cry about my CF. Even when I told him I was getting lungs, he was a rock...my rock. He calmly said, "you got this." He is the one that gets the call when I need some sense knocked in to me. I won't tell you some of the names he calls me...but they are along the lines of, "you ding dong." He helps me get it together again and turn the cry back into that laughter and strength that I have deep down hiding. KNOCK IT OFF, but in a way that for some reason my dad knows how to say to me that I can listen to. I like to think that I am much like him, and can follow that motto he gave our family, "you gotta do what you gotta do when you gotta do it." I can talk myself out of pain and I can do the things I hate because he has hit me with some kind of words that strikes a cord.
My Dad will do pretty much anything to make sure that I keep up my fight with everything I can muster. (Check the blog out about my phone call from Kris Draper...) Whether it is a good home cooked meal...ok MEALS...when I come home; to a card sent in the mail with just the right message. He is the person that when I need a fresh perspective I can sit up late and talk with him and he can give me a new way to look at things...or really just a good reminder of what I had already known. I have this spot in my heart for my dad that just is there and I fight hard because he wants me to.
He was the one who would take me the the majority of my doctors appointments. We had some good bonding time (maybe this is why I feel like we still bond so well!) He taught me things, and how to listen, how to stand up for myself (which I am still working on.) and that I am my own boss in the hospital/dr office. Here is a story for you: so 1 of my doctors was known for his 3 hour wait in the waiting room. Well, I was old enough and knew things like softball practice that I could miss due to this wait. So needless to say I was getting pretty upset and since my dad was sitting there I was, like most girls do, taking it out on him. "Dad, you need to get things done so we can get out of here." "I'm getting ticked off." "This is so ridiculous." All said with MUCH attitude. So with a little chuckle Dad calmly said to me, "Cass, you need to be assertive with some besides me." HUMPH...I crossed my arms and pouted thinking how I would tell the dr (but knowing I never had before.) So when the Dr. finally came in and asked how we were Dad just smiled and said, "Ask Cassie." So as the Dr. turned around I said "Pretty crappy." Dr, "OH?" Me, "Yeah thanks to this 3 hour wait I could miss softball practice and may not start tomorrows game (big deal in high school, you know!) Needless to say, that was the last time we ever waited more than 2 minutes for him. To this day he still will quote "you need to be assertive with someone besides me." And I was, and he is a proud Dad! I have learned many lessons!
This Blog doesn't even begin to do my parents any justice for everything they have done for me and continue to do for me. If you want to know more stories, I will gladly share them with you...just ask.
They never held me back. They always told me to do whatever my heart and head told me to do and my body would tell me when my limits were met. I am positive that even though they didn't know it at the time, as an adult that very thing has kept me sane. I live life. I love life. I love the people in my life. I treat CF like its important but not that it is what should control my every move. Death was never a word used, time limit was never used, nothing to that sort was ever used. It was always LIFE. My LIFE.
Thanks Mom and Dad for EVERYTHING...let me say that again...EVERYTHING...you guys have done for me, Jeremy and Laila. Thank you for taking care of Laila when Jeremy is working and I am down. For dropping everything for the dry run. For making my childhood a perfect one. For making me look towards life more often than death. Most importantly, for just being YOU! God knew that I needed YOU as parents so that I could be strong, and live, and not back down when giving up is an easy option. He gave me YOU because YOU were the best ones for ME!!! I love you both so much!!!
Sunday, November 10, 2013
Things I do to help me with my fight:
...I sleep curled into a ball and facing down with my tummy on my knees with about 4 pillows propping me up just so my chest can expand without so much weight on it.
...I try and bottle up the negative feelings I have for as long as I can in hopes that they will turn around (and for the most part they do!)
...I take TONS of medication and do my therapies.
...I sit by my phone. Sometimes I even just stare at it in hope that I can will it to ring :)
...I have my support system that I can go to when I need to.
...I am learning how sick I am and listening to my body a little more.
...I sit on oxygen even when I don't want to, so that my whole body can stop aching.
...I write my blog so that I can get things off my chest and down on "paper."
...I have a port.
...I smile even when I don't feel like it.
...I try and find the good in something, even when it seems like everything is bad.
...I write lists.
...I speak out and often about my CF and story so that hopefully awareness become huge.
...I pray a lot
...I am accepting more and more help with things I can not do so easily.
...I eat just those extra few bites when I am able to. And I drink the chocolate shakes Jeremy brings home.
...I drink whole milk instead of my beloved 2%.
...I sit back and breathe deep just so the crackles can move for a while.
....I spit up blood and then relax.
...I laugh (when I am stronger than that cry!)
...I try and move on.
...I will go the extra week on antibiotics so that I can have a few weeks of feeling ok.
...I try and do as much as I can in my limits.
...I talk myself out of pain.
...I let my Dad tell me I am silly and that I am stronger than this.
...I daydream (ahhh oxygen in my lungs and sand under my feet!)
...I snuggle Laila instead of carrying her.
...I trust in my Lord. I have faith.
...try and live a normal life.
...I concentrate on how my nails look. If I am gonna feel bad, I am not gonna look bad!
...I think of things I want to get off my 100 things list.
...I repeat the motto "You gotta do what you gotta do when you gotta do it!"
...I accept that I am a CFer.
...I look at things in my life that wouldn't have happened if I had not had CF. I wouldn't have met Jeremy, had Laila, or gone to school with Tay.
...I look forward to something thats coming up.
...put on that brave face and tell CF where it can go :)
These are just a few things I do to help me with my fight. It may seem small, but all those things really do help when you just want to give up. Because I DO NOT WANT TO GIVE UP. I want to win this war, and the biggest battle in the one I am about to face. This is me and this is what I do. I am a CFer, but there is no way that I am CF itself! I am Cassie and I am a fighter!!
Tuesday, November 5, 2013
The dreams are starting to become a bi-weekly thing. I guess this transplant process is taking a bigger toll on me than I thought. Last night I even had one of those dreams you swear is real. I just want my phone to ring and the word LUNGS!! to come up again.
I can tell you all that I really did think by now that I would have my new lungs and fighting hard to be ready for the upcoming holidays. I thought for sure I was going to go back to MI for Dave and Trishs wedding. I thought for sure I was going to go back for Christmas. Now I am just praying that Christmas will come this way this year, just like Thanksgiving is.
I just don't think people understand how this whole process plays tricks on your mind...especially when you had a set and they weren't perfect. I would have been healed and on the road to a wonderful recovery and been gearing up for everything PLUS being able to breathe, sleep, walk, smile bigger, etc. Mind games for sure equal hard days with many tears. Poor Jeremy gets the brunt of it. What would it like to be able to do things and breathe better than I am?
I still forget how sick I really am. I wonder if I need to give in more and just decide that this is the life I have right now, dying. Should I surrender a little more, sit in the hospital more, realize that, yes, indeed my lungs HURT when I breathe? My lung function is not good, do I say I am ready for oxygen 24/7? A wheelchair when I go out for long spurts? Not going out without someone besides Laila with me? MIND GAMES.
I want to be the healthy girl that is so stuck inside ready to burst out every minute of the day. I want all this to go away. Just go away. I want the stress of it all GONE, the worry GONE, the sickness GONE, the fear GONE, the tears GONE, the dying GONE. Gone, gone, GONE! Just gone. More MIND GAMES.
What if I am one of many that I have heard about lately that have died while waiting for a shiny new pair of beautiful, well working, air goes in and out effortlessly, lungs. How can I do that? How can Laila be OK during and after that? How can Jer? How can my mom and dad? My family? Heck, How can I be OK with it...I am so scared. And knowing if that happens, I will just put a brave face on and look death straight in the eyes. Like I said not that I am worried about death, because I know for me it will be a gift of heaven and my saviors healing arms. But to watch everyone watch my die, and to make sure Laila learns as much as she can from me during that time is terrifying. To say goodbye and watch the hurt, blah. No words for these MIND GAMES.
Praying for that call as hard and often as I can. Please Lord...please.
Thursday, October 31, 2013
This was so much fun, even if I am not very creative and it looks silly. I HAD FUN!
I got to cross another item off my list last night and did it with such an awesome person! Jenni and I had so many giggles as we learned how to paint these "flowers" and even if the teacher told us we were too anal. Well, if I am gonna hang this sucker up I want it to be as perfect as I can make it.
I for sure got the painting bug and kind of want to go buy some stuff and see if I can make this painting better, now that I know all the steps and how to make colors that I love. I mean, I can't even believe that I painted this (those who know me know I have NO creative genes running through this body.) But it didn't stop me or my brave partner for just going to town and laughing when we knew we did something stupid. Maybe there is never a mistake in painting or art...just a new way too look at the same thing. (Besides that black line I didn't want there! HAHA!) It was awesome watching the painting "come to life" if you will, and become those silly flowers that you all see. And to watch how different everyone does it, or the colors that you make. It was just really fun and I am for sure going to paint again!
It was great to be able to do this with such a sweet girl who didn't care that she she felt she couldn't make a good painting (Ummm...come on people hers rocks, right?!) Jenni and I became fast friends and we help each other out emotionally as much as we can. Its good to have someone else to talk to that doesn't mind the tears that come with it. She has her own story but has always wanted to know how I am and puts that first, she is a ton braver than she thinks. Just love her to pieces!
Thanks Jenni for being with me while I crossed #57. Learn to Paint off!
Monday, October 28, 2013
I get a ton of support from a ton of people, and as my story gets out there and people learn about it and what is going on
I may seem like a strong person on the inside but, certainly as of late, I have become such a sentimental softy. And you all have touched me so much with your words, texts, messages, donations, gifts, packages, emails, calls, letters and person to person conversations. Now there are tons of them have touched me in many ways but I just want to share a few that stick out right now:
"You are going to rock out the transplant." Alyssa
Every time I see my Grandma's name attached to anything related to this.
A gift that Laila got from a wonderful family (who knows just a little bit what its like...their daughter has been in my shoes before.) so that she could have something fun to do!
The dinners that people have made. Especially the meals that a Mom of a very brave CF fighter made and drove over to my house.
The bag I got from a family with everything I will need in the hospital after my transplant.
The paracord bracelets that a 1st grader and his mom are making in order to help raise money.
The chicken dinner that all of Peace really helped with. Without you guys I am not sure what we would do!
Seeing my name in blinking neon lights at the local dentist to show their support/
The penny I have taped to a post it saying "A 2nd grader found this and wanted to make sure you got it."
My just breathe bag.
The new Team Cassie bags.
Faith and Giggles for all their support and to help get the word out through the local paper.
People helping me cross off my 100 things list.
The article Jeremy wrote.
The many letters from around the US with words of encouragement and reminders.
"You are a strong and stubborn person, you are going to do very well with this transplant."
The list could really go on so much longer, but I need to cut it off. Thank you all very much for everything you have done for me and my family. Everyone in Michigan for everything you do with the Team Cassie things and when I go back to hear how many people read my blog ITS CRAZY! To see everyone I have known since I was a little girl work hard to help raise money because they want me to outgrow them. My family for the moral support and knowing when I am blue and mostly knowing what I need to hear.
For everyone here in Hartford and at Peace. I am have said it before and will say it again. You all are amazing and have humbled us very much. We thank God for putting us in this area where people want to help as much as they can and will work hard because they know I want to live. The city and church are crazy supporters and I love when people come up just to tell me that they are thinking of me and they want to help because they are. It could be so hard and it would be another thing to stress about without you.
Please know that I cherish everything that happens and that I will always feel very blessed by what is going on, even if it doesn't always come out clearly.
I am hoping that I get the call soon (as I pause and stare at my phone trying to will it to ring.) And I hope that I can rejoice with all of you after I am transplanted and healed. Here I sit tonight, yet again, feeling blue because I am not sure when the time will be here. Yet, I can be happy to know that when it does I will still continue to get so much support from you all. This many not be beating CF, but it sure is showing it that I am not going to stop...no matter how hard I get beat up!
Thank you all again. Much love!
Tuesday, October 15, 2013
I got to go home yesterday! Holy smoly, it feels pretty good to be out of CF jail. But why do I always forget that when I get home, the 3 of us living in this house are exhausted!
I have fallen asleep accidentally twice now and was asked by Aunt Gwynn (who came to help yesterday and today...a true God sent!) to go take another one. Jeremy went to bed earlier than I did lastnight and now Laila put herself down for a nap. We all just need to relax, rest and get on with our normal life. My legs need to get used again, my belly needs to get good meals, and my body itself just needs to breathe. Its one of those few weeks that you schedule everything pretty tight so you can schedule in time to sit and do nothing.
I left with my lung function at about 23% and sadly that makes me pretty happy, even though I wish my baseline was higher....at least I have hit it again and hope to just remain here while continuing my ivs. I have learned a little that it is ok to ask for more help and to take away some things that I know I can't handle. I have to remember that I am in fact still that healthy girl stuck in a sick girls body. I also learned that I need to be getting more fluids, because in deed it does the body pretty good...that and some oxygen.
My life (in regards to how my body handles health) keeps changing every week. I realize I push myself too much in order to keep up with my the healthy person inside. I am not really sure how to calm her down and make her see that the unhealthy person I am needs her to see that sitting doesn't mean you are lazy. A handicap sticker is ok, oxygen in public is ok, a wheelchair doesn't mean you are weak. But that is all so much easier said than done. I want to be independent. I don't want the burn in my lungs, the blur in my eyes, the shakes from medicine. I want to be healthy. I want to clean, do laundry, cook, do dishes, give my child a bath, bathe myself, be an awesome stay at home wife and mother. Instead I skirt by and quote my Scarlett O'Hara and tell myself that "tomorrow is another day." I want to organize things, but know I don't have the strength to do the work, but don't have the mind power to sit and watch somebody else do it. So I look at my house and say it is what it is. One day (I hope in the nearer future...) I will have the lungs and the health to do all this.
For now I am just going to be grateful for the rest that my doctors demanded I get and for the fact that I felt well enough to at least leave D6/5 and head home to be with my family, my bed, my food, my couch, my everything. Maybe and hopefully the next time I come home from that joint, I will have a big incision to heal and some new lungs to exercise. Wow, the thought of taking a deep breathe is like thinking of opening a present on Christmas morning...you just get the exciting feeling!! Until then I am breathing my shallow breathes and watching my phone!!
Sunday, October 13, 2013
It happened once before at the funeral home for Ma's viewing. I really thought it was because of the surroundings and because it was her first time really seeing death, let alone people trying to explain it to her. But it happened again tonight and so I now know its on her mind more often than I want it to be. It is one worry I didn't want my 4 year old to have.
Laila and I were in bed while Jeremy sat in the chair watching the Tigers game (we can get the next few games, boys) and Laila started to feel sad. I asked her what was up when she burst into tears and told me she didn't want me to die. UGH. "Laila we don't have to worry about that for a long time." What else am i suppose to say! She kept crying and talking about how much she will miss me if I die and go to heaven. That she needs her Momma and won't be able to see her again if she dies. "We will see each other in heaven, girlie." Again, what am I suppose to say? But Momma is sick and she just wants her to come home. "Momma, always comes back Laila." WHAT AM I SUPPOSE TO SAY? And then she climbs into my arms and melts into my body because she just can't get enough. Her comfort is to hold on to my arm and when she is scared about things like this all she wants is my arm to wrap around her. I didn't know what else to do but give her both arms and the rest of me and just sit there rubbing her back, fighting back the tears down my cheeks while hers where coming at full force. My poor little baby.
We finally got her settled down with a few, "Jesus doesn't want us to be sad about that" "We will all be in heaven together one day" "You will be old and a Momma yourself when Momma goes to heaven." and a bunch of things like that. Like I said about how you are never prepared to kiss and hug your daughter one last time before you say goodbye for a transplant....you are never prepared enough to talk to her about death, especially YOUR death. I am not quite sure how people do it. My heart broke a bit and the guilt started up again.
It only makes me want to fight a little harder, even when I feel I have given my all...find that little extra in there and fight harder. It makes me worried a little more about post transplant and rejection. It makes me worried that I haven't done my job as a parent. It makes me sad for my daughter. She is 4 and her biggest worry should be if the skirt on her dress spins well enough, not if her Mom is going to die, go to heaven, and leave her. I asked her where she got this from...who said anything about me dying, she told me she got it from her own head. So now its our job as parents to reverse her thought. I always thought I did by telling her all the goods about the hospital, doctors, medicine, my "boo boos", and of course getting new lungs...it all means that I get to run and play and give her under dogs on the swings again (Yes, this is very big in Laila's world...Momma is gonna be strong enough for underdogs and to carry her again.) and I promise that I will do all those one day. So what gave her this idea? I for sure have to now put a little stronger face on when I am not feeling well, and make sure I watch what I say about breathing and how I feel etc. I want her not to worry about death..
Lailie, Momma promises that you will have YOUR mom, always. And just remember, “If ever there is tomorrow when we're not together... there is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.”
Thursday, October 10, 2013
There is no way around but to say this STINKS!
I am back in the hospital with a very bad infection. The last few days I was feeling like I was suffocating and just couldn't breathe. Heck, I couldn't even walk across the house without having to sit down on the floor or bed and just rest. So Jeremy and I decided it was time to call and see what was going on.
We came in yesterday to see how "bad off" I really was. My weight is at a steady 97lbs...yeap a whole whopping 97lbs...and my pfts are now down to 18%. What an awful number to see, there isn't much wiggle room to work with now. I can't drop much more without having to basically LIVE here in Madison. I am hooked up to a bunch of things....being pumped full of drugs, fluid, treatments and the dreaded tube feedings.
I had a good talk with my NP, Brooke, and it was nice to hear things she had to say. Like I am the highest on the list that I really can be for my size and blood type without getting so sick that I would be on life support. She said I needed to stay where I am now and from now on I will always start my IV treatments in the hospital for a few days. I am going to spare you all the things she said that I didn't like because I am trying to tell myself that NOPE I am not getting to that point. I am going to kick some butt this week and just realize that I can't do everything I want to do. Cooking, cleaning and taking care of my fam is my job and sadly that even gets put on hold sometimes.
Since winter is coming up I decided that I was going to save my little pennies from taking pictures and get some new boots I found....an incentive for getting out of here and staying out. I can rock my new boots out in public. Doesn't that cure any blues away? It is for sure time to stop being glum and face reality...live the little bit of life that I have left in this set of lungs. They have lasted a pretty long time and I am just trying to spoil them so they want to work a tad bit longer hehe!!
Enjoy life, if there is something you want to do...do it because you have to ability!! I know I am (boots hehe!)
Thursday, October 3, 2013
It was a crazy week. I guess me planning my funeral service was the foreshadowing of my grandma-mas funeral. Yeap, she is now with our Savior in heaven and as much as we will all miss her we can take comfort in knowing where she is.
Laila and I flew back to Michigan on Saturday. It was a whirlwind trip full of many smiles, laughs, and of course tears. She was such a wonderful woman, full of sass, grace, love, stubbornness, and just a pretty neat woman. She was so sassy and had such a great sense of humor and it stayed pretty much until the end. One of the last things we joked about was me not being able to get her lungs!! She was the matriarch of a family. My family. As happy as I am that Ma is joining her husband, son, and parents in heaven, this one rattled me a little.
Now that the last one in that generation for this branch of the family tree is gone, it means I (and my sister and the rest of my cousins) have moved up to the generation of "kids". Growing up there was the patriarch and matriarch...the parents; then my parents generation was the "kids"; and we were all the "grandkids". Well, now my Dad is the patiarch now...the parents...the PaPop. I am grown up, just a kid. Our generation has to grow up and be smart about adult choices! Many memories ran through my head, happy and sad. I passed the old house my grandparents lived in and as I am sure would happen to anyone in the family...memories and voices became alive again. I could see me playing in the ditch with my cousins. I could watch my grandpa saying his final wave as we headed home for the night. I could feel my grandmas nails on my back as she did "itsy-bitsy spider" to scratch our backs. I could hear the clocks ding, hear the old stories (and let me tell you the Zell men can tell a good story!) I could smell the warmth of their house on Thanksgiving. I was a young "grandkid" again.
She was one of my biggest supporters when it came to CF, she was always thrilled when I could tell her I was feeling better or that new medication was coming out. She was thrilled that I accepted on the transplant list. She wanted so badly for my lungs to came that she asked me not to come see her to say goodbye, or come to her funeral (shhhh what grandma doesn't know can't hurt her....especially since she is in heaven now!) But it makes my heart a little sad that now I can't share the joy of the real deal transplant, that it really did happen this time...not just a dry run. But I am happy that she doesn't have to worry about that or other things, and that she is so beyond content!
I had a great time with family and friends. It was nice to be with my cousins laughing...we haven't laughed so hard a in awhile! They are just awesome people. My health is still OK, and just have been sitting on 02 non stop since I got home. I plan on sleeping in tomorrow and getting a good night sleep...you know either that or I get a transplant call!! I want to thank everyone for all the thoughts, prayers, for coming, the memorial, the flowers, the good memories, kind words...whatever it was, it was much appreciated!
There is the throne of David,
And there, from care released,
The shout of those who triumph,
The song of those who feast.
And they, who with their leader
Have conquered in the fight,
Forever and forever
Are clad in robes of white.
Wednesday, September 25, 2013
First off I want to clarify that this is not me giving up. Not even on my worst day am I going to give up. The thought of heaven and not having CF is wonderful, but at this moment I have too much to live for.
Now with that said...
I planned my funeral service. For those of you who want to get upset at that....sorry you can't because I already told you I'm not giving up. I pray that I don't have to use this for awhile. But it will make life a tad easier for those I leave behind, there really won't be too much to talk about because my wishes are written down. I have made sure to include my loved ones while planing this and making sure there is a special something that will let them know I love them...and I am sure those I did it for will know what theres is so I probably won't spell it out for the world to see because its not important for the world, but for my loved ones.
I would like 1 "full" day of viewing and the funeral the next day. I want to be buried where Laila will always be able to go back to, just in case she needs that. In lieu of flowers I would rather have money go to the CFF in honor of my family.
I will be wearing my beautiful JCrew dress that got a number off my bucket list. That dress is me, that dress represents what I did and how I beat CF as long as I could. My nails will be polished a FAB color and better be the best mani I ever had...hey if I am gonna look bad, I'm not gonna look bad...you know what I'm saying. My eye shadow will be a pretty brown shade, but please not too much because I don't want to look like I'm trying to hard (haha....come on you can laugh at that!!!) Now my hair: this one I was unsure about, but I decided I wanted curly hair because well I was told I looked pretty with curly hair! I don't want to be buried with any jewels on besides some stud earring that nobody would want (but they MUST be sparkly!) The jewels that are put on me will be taken off and given to certain members in my family.
Now for you guys: YOU WILL NOT WEAR BLACK. There will be little to no mourning you got it. I am not telling anyone how to feel, because I know I can't...but I can ask you not to wear that sad color. If you do choose to, you better wear a pop of color that screams HAPPY...think hot pink here. This is a celebration that I beat CF as long as I did. A celebration that I am now with my Savior and feeling no pain. No "sorry for your losses" but rather a "so happy she is with the Lord now." My family will most likely need you, please take care of them and help them feel and remember joy.
I have people picked out for the service and for things in the service, but would rather just kind of keep that to myself and the 2 people who helped me plan, I just feel better about doing that. Plus is depends on when I go to heaven who is still around...if you get what I am hinting at.
My sermon text: 1 Corinthians 13: 13 (which happens to also be my conformation verse and my moms. Plus I have the symbol tatooted on my body of FAITH HOPE LOVE with my schnisters.)
Lessons: Romans 6:3-10
Revelation 7: 9-17
Gospel: Luke 8:40-42, 49-56
Hymns: 219 (sung at the beginning of service by a soloist or if they would the SEM students)
214 (but sung from the tune by thaxted and special instructions for certain verses)
120 (vs 1,2,4)
498 (sung before the sermon)
599 (but from the Lutheran Hymnal...the red one that I am pretty sure only one awesome church still uses.)
So there you got it, the gist of what I have planned. Hope you all can make it (come on you can all laugh at that too!!!) #96 Help write my funeral service
Tuesday, September 17, 2013
Starting a new round of antibiotics always makes me a little blue.
I am sure it is so many things all mixed into one, just all bottled up and ready to come out in a cry. It ranges from the fact that I will have tape on my skin for at least 2 weeks, to not being able to shower easily, to having to stay up late and wake up early, to things like...me not being normal, to be going down hill farther without a transplant, to be getting so sick that the worst happens: death.
Now let me go back and say I am not scared to die because I know what awaits me. Heaven and my Saviors opens arms. But I am scared of all the things left undone here. How will Jeremy be? (he will have to raise a crazy girl, he will have to work and then come home and cook, clean, he will have to find a new wife...yes he already said he would.) What about Laila? (I can't even start on this one...I will just say she NEEDS a mom...HER mom!) My parents? (Now that I am a parent I couldn't imagine burying my child.) My sis? (We have gone through everything together and she would have to do things without her sister now.) My best friend? (we need each other more than normal friends need one another!) What about my aunts, uncles, cousins? (I have seen what death can do to a family and feeling people have and I never EVER want my family to have to go through that again.)
It is the things that make me sad that I know I need to try and forget, or really even better (as Laila has re-taught me) to pray about it. The next 2 weeks are going to be crazy and I know that I am going to have to sit on 02, breathe, eat and do EVERYTHING for my health. It is OK to skip a moment of fun, or to eat leftovers, its OK to ask for help.
I have 2 more hours til I Jeremy has to stick the needle into my Port and I am trying to just enjoy the air on my skin, and Yes, I did take one last easy shower. This stuff can easily play mental games with you. Sorry everyone, I wish I was as strong as I can seem, but tonight I just am not. I know some of you are waiting to see what I am getting crossed off my bucket list (and it isn't the most fun and I know a few people who will get upset, but its what I want to do!)
Dear Lord, please make me strong!
Monday, September 16, 2013
It is amazing what even your 4 year old can teach you, or I should say RE-teach you. I have been very humbled the last 2 days and reminded me where to turn to when I am feeling down.
Laila's faith has grown a tremendous amount lately and as a Lutheran parent this thrills me beyond belief and makes her dad very proud. She talk about Jesus a ton and will tell us all about the lessons so has learned, what they talk about in school, and for the last month or so has been having Jeremy read her her children bible before bed. But my favorite part is how she has been turning to prayer when she is thankful, wants to ask God for help, or really and truly she just wants to talk to him. Here is a prayer she had me write down for her:
I want you to come back soon and take us back to heaven with you. I want you to pick us up to go to heaven to see us there and I want you to take everyone to heaven. I want you to take everything, carrying us first and everything second. And thank you for sending us to heaven and dying on the cross. Please help Daddy feel better and make Mommy's smelling come back. And take away Mommy's Cytsic Fibrosis to feel better. Thank you for letting Jesus die on the cross.
Just read that. How can you not see her faith pouring out in every sentence. It isn't a prayer that has elegant words, or written welll, but who cares because it came from her heart and she meant every word. (She also drew a picture of her family and Jesus too...beard, robe, and all that!) I love this and it makes me realize I need to pray a little more and put my faith with this transplant and CF with my Savior. If my four year old can do it and say it proudly, I should be able to.
Oh to have that child-like faith. I love you Laila, thanks for reminding me doll face!
Thursday, September 12, 2013
Sitting on more and more oxygen and needing to do my nebs more than I have....must mean its time to think about another round of antibiotics. I am back to the point with the transplant process of thinking how I need to lungs soon because living with this health is not a way to live.
My lungs are getting so heavy. So heavy that my posture is getting worse and I look forward to Jeremy coming home so he can lift them up for me. Sounds weird but he squeezes my chest and lift the load upwards. It takes so much weight and pressure of my chest that I can breathe for that little bit with some ease. Suffocating is very uncomfortable.
But I am trying to not think about that and stay the fighter I know I need to be. To continue to do things I love because it helps. I am still cooking. I am still taking Laila places she enjoys. Still going out with Jeremy. Still trying to keep my house in some what order. Still do things "normal" people do. Sadly, it is getting harder and I run home from WalMart gasping for my oxygen. Maybe its time to bring it with me. But then I get the looks and it just makes me so upset. I WANT TO BE NORMAL....HEALTHY.
I know that once I get lungs I will still have problems. I know that I will still have tons (even more) meds. I know its by far not a cure. But I also know that I want air in my lungs, I want to breathe, I want to feel semi healthy. On my worst day I want to feel 10x better than I do on my best day now.
I am ready...ring phone, ring.
Friday, September 6, 2013
I am finally updating my blog about my "100 list." I am so sorry to those people who have helped me and I have slacked on this. I know that none of the people are expecting a big blog so that everyone knows how wonderful they are BUT I am gonna finally write it anyways because all these people truly are wonderful and are some of my favorite people in the world.
First off, I got an outfit from JCREW! For my 30th birthday I got this awesome gift from my Aunt...with an awesome note on top! She bought me a fabulous dress (that honestly fits me like a glove, people...and thats hard to do!) and a sparkly bow belt to match. I am so in love with this outfit. I wore it for Easter, a few Sundays, I am wearing it to a wedding tomorrow, and well I plan on wearing a lot because it makes me feel sophisticated and ladylike! Thank you so much Diane. I love you to pieces and am so glad that my Uncle married you so I could have you (and your boys and Haley) as my family too! Plus my wonderful friends Jenny, Brian and Kieron have helped me be able to add to this wonderful dress...maybe some shoes or cardigan!! So thank you all for letting me cross off #16 Buy an outfit from JCrew (and rock it!)
One great thing with having a camera is taking tons of pics, the bad thing was I had no place to store or edit them. But, WOO HOO, I got a laptop and was able to do all my work on there (and not have to hog Jeremys for hours!) I still want to put a few cute little personalized touches to it, but because I am so indecisive I haven't been able to do that. But 2 sisters helped me with this purchase and I can tell you (and I know if you know these 2 girls you will agree...) you will NEVER EVER find 2 sisters that are so wonderful and giving and such amazing friends. THE GRAVES GIRLS!! Stacie (yeap, my bfff) and Stephanie (the momma to my first Godbaby and one day Laila's future Mother in law) are beyond words. Seriously I can put them into words because whatever I would say would not do it justice. Trust me! I love you both so much and miss you all the time. Thanks a million for helping me cross off #31 Own my own girlie laptop!
|This is a picture my friend Rachel took. Check out her facebook|
page Rachel Z. Photography
I am still in the process of a few of these wonderful #'s, and thanks to all those who have been helping!! I am working on a few and even though you volunteered your time and service, if you will, I am working on making them all perfect! My teeth are almost white, my skin still has ups and downs, I WILL start eating foods from all the states, I am calling my family tree as almost done, and I am waiting til after transplant to FINALLY get those awesome jeans tailored (hoping I will gain some weight!!!) Thanks so much everyone who is so willing to help me. I appreciate it and man is it very humbling!
Getting things done and it feels great!
Tuesday, September 3, 2013
I think sometimes I set myself up for disappointment. And I feel like I did that this weekend. I packed my bag to the brim including my phone charger because I convinced myself that this was going to be the weekend I got my call. I cleaned my house and painted my nails so that it would be one less thing to cry about. I convinced myself so much that I have had so many dreams about it, good and bad...even woke up in a sweat this morning.
I am trying to tell myself exactly what Jeremy has reminded me, in a nut shell to just move on because my life is the same as it was before the weekend started. I just swore my phone was going to ring early this morning. All I got was a wake up text from my sister. Needless to say I am going to try my hardest to just breathe and get the little disappointment out of my system.
My grandma is doing somewhat better and the medication she received has helped a ton more than anyone had thought. Thank you, Lord. I am excited to call her later today and talk to her myself. She can still make me laugh and we are still able to joke...glad I got come of that Zell sense of humor (even if other people think its not so funny...)
I am very homesick right now and hate that I have no idea the next time I am going to be able to go home. I can't plan it because I just don't know. I miss my entire family, my old room, nasty chili fries, game nights, schnister time, my parents deck, tailgating with my dad, shopping with my mom....ok the list could go on and on. And this disappointment hasn't helped with that.
GET OVER IT CASSIE!!
Get over it for you, your husband, your daughter and for everyone else who you are going to have to talk to. I am not going to sit here and cry anymore, I am not going to sit here and think of what COULD BE, but what WILL BE.
Wednesday, August 28, 2013
Stop Growing, Laila!! Today was Lailas first day of school this year. My little lady is getting too big, she was actually taller than some kids this year! My little peanut. Look at her writing her own name..so cute!
She is going 3 days a week this year and is very excited about it. We dropped her off after all the pictures, and first day of school traditions I have started. She was OK with all of it until it was time to say goodbye and then she started to get a little nervous. Of course it only took a, "Look, Pieper is here!" for her to hug and give a few kisses before she ran over to sit by her.
We picked her up and wasn't ready to go home, we had tears the whole walk back because she wanted a friend to come over...and Mom and Dad did NOT qualify as a friend. Whatever, I play a pretty awesome My Little Pony!!
This could be because I am feeling a little better and have enough energy to use on planning, but I am going to start a few things this school year and hope to follow through with them. More planned dinners, more reading, more crafts, more outings. I would like to continue it until my body tells me to slow down, and then slowly continue until I get "the call" and then hopefully everyone else can help continue her little routines.
I was hoping to have them by the time school started so that she wouldn't have to miss so much school while she was in Michigan, and part of the reason I was so excited about getting the dry run call when I did. But I do know that God has his plan and whatever it is REALLY is best. Luckily, Laila has one of the best teachers who understands and is willing to help. Jeremy and I are also lucky enough that her teacher is a friend and can go on a personal level can get so much help from her, this really is added to the list of blessings we have during this process.
I have signed up to do 2 CFF events in the next couple months...some very awesome opportunities. I am looking forward to them both and hope they go without a hitch. Fingers crossed and prayers sent!! I also hope all of the Team Cassie events both in Michigan and Wisconsin go smoothly too, thanks to all who have worked so hard in both states to help us and the CFF out.
I am still hanging in there, and since it is summer the color I have got from the sun and some good makeup makes it look like I am a little healthy...and would be better if I put on a little weight. I still have so many crackles in my lungs and they are getting louder and more annoying. I am not a quiet person any more and if I needed to hide to save my life, it wouldn't happen...my breathing would give it away. I am dreaming about the day I can be quiet again, run, jump, clean, cook, shower, shop, travel, and most importantly BREATHE again.
Here is to another school year, and a crazy one at that!