Friday, September 26, 2014

Weight Down & Surgery (Tube explained)

Pre-Op Appt:

 I had my consultation with Doc C. (my surgeon). Yep, Doc B ( my CF Doc) and I were right. I need surgery. Oh, boy! (sarcastic voice) But, it could be worse. I could still need a G-tube. Let's catch ya up if you are new or don't know the details.  Here is the 3 link journey through my life with a stomach tube!

First: Why I got it and I how I feel about it: "Tu-be or not Tu-be"
Secondly, The day I got it out: "Amazing, Terrifying,& Disbelieving News"
Lastly, my problems now that it is out: "Healing & Fighting"

You may be a frequent reader and have read them, but just incase the links will fill you in!

Okay, so what's the problem? Why do I have to have the surgery. Well, #1 I've lost lots of weight since it came out.  I'm a 100.0 lbs (almost below triple digits). I worked soo hard in college to get into the 100s, I think I will cry if I drop to the 90s. I'm bummed I lost the weight. And no, it is not because I need the tube still. I didn't use the G-tube for a full 9 months and maintained 106-108 lbs easily for the last year. However, now that it is out I can't really eat. I have to be careful because the hole won't close and it leaks. If I'm going anywhere I don't want to eat before for fear it will leak. I don't mean a drippy roof, I mean if you had a tree fall through your roof and you had a big hole in it!!!!

If you are thinking about a G-tube please don't let this experience to deter you. It was still worth it and I still believe it saved my life for the 15 years I had it. AND you won't have the same experience with it healing probably. I had mine placed in 1997, which was before the Peg/ Blow-Up Balloon Tube. I had to have an acutal long tube attached and we coiled it around on my stomach skin and taped it up. A few months later I got changed to a button (but not the Peg/Mic-key) but a Bard. It was a hard plastic one where the ball end didn't deflate. They don't tend to use those anymore. AND Doc C (my surgeon) said now they can place them laporscopically, so none of these issues arise. So he has to fix the mess. My surgery in Oct 14th, so ready to get this over with, but sad I will miss a week's worth of Real Estate Classes.

The Surgery & how he is gonna fix me :-) I think my cartoon helps!

Left: me with the tube. Middle: Me now that the tube is out. See how the actual stomach organ is attached and fused into my abdomen wall. So Doc C has to go in, unattach (carefully rip it off basically) it and put my stomach back where it belongs, then stitch up the stomach organ and my abdomen/stomach skin. It will be a 2 inch vetical scar right over where the hole/tube was.

Yep, that's the surgery. He said I'll have to stay in over night probably, then a week recovery. With coughing its always sore healing and I'm preparing for a bowel obstruction. Because after surgeries I always have intestinal issues for awhile. Pain meds don't get along with me, so I usually watch a show I love like "Downton Abbey" and focus on that. 

This weekend we are going to the Wisconsin Dells for a Wedding, so I'm very much looking forward Andrew & I's mini-vacation.  My friend getting married and the weekend away will take my mind off my surgery and the past week. (read posts below to see how the week has gone & read my tribute to Laura, it is still super hard). But I'm looking forward and pushing myself. Getting my stomach hole fixed, putting all that weight back on, and getting back to classes and life!!! Focus. Focus. Focus.

What do you do while you heal to take your mind off it??????I watch marathons, design houses, surf the web, and BLOG! lol

Tuesday, September 23, 2014

2 Girls on a Mission

Laura and I :

(let this download a lil, video at bottom)

This is the hardest Blog I have ever written. I woke up this morning and I found out my beautiful best friend Laura passed away last night. I started crying so hard I gave myself an asthma attack. I couldn't and still can't comprehend this. She was struggling a lot over the last year and especially last 6 months. But in the last few weeks since moving back home to Illinois she seemed to be getting some of her steam back. She kept fighting pneumonia and lung infections that wouldn't go away, but she was starting to be able to eat more and even doing more walking. She even climbed a flight of stairs. I really believed that Laura would battle through for a few more months until she could be listed for a Transplant. I never knew whether she'd get one, but I think I always believed she would. I couldn't bare the thought she wouldn't be able to get one.

Transplants are so difficult. You have to meet the criteria and have a small window (where you are ill enough, but not too ill). It seems so unfair that we are only allowed this window of opportunity to save our lives. She was always trying to be positive, she was always so sweet and beautiful. I can't believe she isn't here anymore.

Everytime I get sick or have a surgery I call or texted Laura. She was my partner in this battle. She had a similar type of case of CF that I have. We both have lots of intestinal/stomach issues. Both have had over a dozen sugeries/procedures and some secondary problems. She had CF diabetes and I have Arthritis and minor liver issues. She just understood. I know my family and non-cf friends are always there for me, but Laura could get my weird jokes about shaky hands on surgeons and stuff. We've know each other since we were kids!!!!! We practically grew up together in the hospital and watched as all our other friends lost their battle to CF.  I hate CF because of the amazing, young people it took from the world. I know I say I appreciate CF for teaching me strengh, determination, and independence. Well, its a love hate relationship.

At the age of 10 I lost Casey, my other half. My CF twin sort to speak. Casey and I used to pull pranks on the CF Camp instructors. We put a frog in an easter egg during the hunt! We used to stay and play at each other's houses in the summer. We'd go swimming at hers and drink ensure after getting out. And I even still have a carebear pillowcase she gave me! Casey was my age and she should not of lost her life at 10 years old. Andrea was a couple years older than me. She was 17, me 12 when she passed away. Andrea actually used to stay at my house for a full week or two in the summer. My mother was like a parent to her and she was like a big sister to me. Kevin, my monkey boy. Kevin I used to race wheelchairs with in the hospital and we'd play hot wheels. We never hung outside of the hospital, but he was always in whenever I was. I used to have my nurses all sign a tourniquet and I have one that say Kevin "your monkeyboy" . He was 17 when he passed away. Then there was Danny, my first crush and kiss. He passed away in 2010, we were both 24 when he passed away. Danny and I had lost touch because when we were in junior high is when CFers were told not to be around each other anymore. I invited him to my 8th grade dance as my date (he couldn't go), but sadly in high school we lost touch of each other until I found him on facebook in my mid 20s. And now CF has taken Laura from this world. Laura and I have remained close ever since we were kids.

Everyone always says "at least they aren't suffering anymore" and yes I'm glad her suffering is over. But not really, why? Because I know I'd rather be alive and suffer every single day if it meant being with my family and friends. Laura kept on pushing. She first told me in 2012 she'd need to new lungs, but it wasn't time yet. She wasn't sick enough. She knew it would be a hard long road ahead of her, but she wanted to fight. And yes, there are times when we think "ugh will it stop, will it ever end" "does CF always have to get in the way
of my plans" BUT, we never wish for it to end if it means not being here. She was so much like me when it came to the way we look at CF. We've seen people give up, people turn to drugs, people get negative about life due to CF and neither one of us wanted to be like that. We reminded each other of what life was worth and how beautiful the world is.

I'm mad, sad, devastated, confused, every emotion and for more than one reason. First, and foremost. It's unfair. I know that nothing ever is and that is life and it seems childish to write that statement. But she was 33, she wanted a career, a family, and at 33 her life ended. She was so sick most of the time she couldn't even hold down a job the last 5 years. She was in the hospital too much to be able to get through classes, when she got her CNA I was so proud. She had dreams and things she wanted to accomplish. She didn't get a chance to even start them, she practically lived the last year in the hospital, but Laura did do this. She motivated and still motivates me every single day. There are days I don't want to do my nebs and just go out with my friends instead, but I'm reminded of Laura. She'd say to me "Girl, do your nebs, you gotta!" She used the word Girl a lot. I can hear her say it actually, with a bit of spunk and flare. So mostly I'm sad because even though Laura did do amazing things, she didn't get the life she deserved. I hope she realized what she did for everyone and what she meant to us!

Also I'm upset in a selfish way. It makes my mortality more real. We were similar, I'm the last CFer from my clinic from my age group alive. And I don't know what to do without her. For the last 10 years bascially she has been my only friend with CF (that I've known since childhood) and the only CF friend I've hung out with (in the past) in person. She knew everything about me. She was my go to for everything CF. Life will be a lot tougher everytime I'm sick or down in the dumps about CF. I don't call my friends at home (without CF) when I'm feelin down or upest about CF stuff. Even though they'd listen  and empathize, Its not the same. I feel like I lost the better part of our team, the half that was the spirit and beauty.

So Dear Laura:
I'm sorry we couldn't be together for the last 5 years in person that I never got to see your face smiling at me in person! I hate that those superCF bugs kept us apart. But I always knew you were by my side and still are. I will think of you whenever I eat good n plentys (even though people think we are crazy  for loving them). And know I'm going to take my sadness and turn it into power. I'm going to try even harder to kick CF's ass (as you always said) and to show it who is boss! I'm going to think of you everytime I run a 5K (which I'm going to start doing again), because you always were so proud of me for jogging and keeping on top of my health. In 2012 when you told me you needed lungs I made the facebook video for you, then I started training for first 5K. You were my inspiration. I always think of you while jogging and listening to Bruno Mars " You can Count on Me" and you were the reason I finished my first 5K (only one I've done) in 2012. The last 2 years I've been lazy and complacent. I promise no longer will I sitt on my butt. I will be the healthiest I can be and achieve what I want in life for myself and for you. I want to continue to fight CF and prove to CF that it won't always win!!! I'm still in battle (as you always said) and I know you are rooting for me!   I love you so much, I can't even comprehend this yet.

Your Cyster (sister with CF), your bestie, your partner in the mission,
LOVE, Cheriz

Please take the time to read about Laura's Long Journey. I have all the posts about her labeled Laura. So when you click on the link below it will show them all. Go to the oldest post and read towards the newest if you want to read them in order! Laura's Posts Newest-Oldest- read here!

 And if you knew Laura and want to pay respects. Donate to the CF foundation: you can do it online or you can donate to my "CF CLIMB" Challenge. I'm going to be climbing over 59 flights of stairs to raise money for CF & now for Laura! I'll be posting it in a week or so to my Facebook page & on here! Below was the video for Laura that I made in 2012. While she didn't get her lungs and the video is a lil old, I think it still shows her beauty as a person. Girl, I love you and miss you! Feel free if you knew Laura to leave a comment below about her!

Sunday, September 21, 2014

My Future & Family Wknd

Missin My Family:

I've been living in my current apt for almost 2 months. I love the area, the festivals, the small hometown feel. I've always been a small town girl. I like visitng bigger & busier places; but I can't deal with traffic everyday. Living in Chicago Area was difficult. My docs office was only 9 miles away, but took 40 minutes to get there. Back in my hometown I could go 9 miles in 9-12 minutes. CRAZY. I just couldn't handle it. So the move here was very welcomed. BUT, I don't know anyone around here. I'm still not able to work due to my stomach tube hole not being healed. It stills leaks and I have problems with it a lot. Which is okay, I've dealt with medical problems before. However, I can't work and I'm in a new town. Which means a lot of me sitting at home bored. I'm taking real estate classes two days a week, but that's not enough.

Why and I doing classes? Well, I went to Graduate School in the fall of 2013 (Read About What Happened w/ Grad School Here!) and I ended up in the hospital a LOT. I had to withdraw and I kinda have come to realize over the last year that I can't keep up with doing school full time. Its too much anymore for me to get through a whole Grad 2 year progarm it would take me probably 5 years part time. I don't want to dedicate that much more time to school (for a degree I'm gonna use only part time). Especially when I have always wanted my real estate license (and for it to be my main focus). I've been designing houses on graph paper and going to open houses for fun since I was 8 years old. I started taking real estate classes 2 years ago, but I got sick and had to withdraw. 2013 was a really rocky year medically. However, I'm finishing up real estates classes this December and I'm doing great. I'm completely recovered from my cold and I'm doing amazing in my classes! I can't wait to get licensed and start working. As an independent Contractor (Real Estate Broker) I can work from my home and not have to compromise my health for a job or school anymore! And I can't wait! I can still do work with non-profits and help them with PR and Media! I love planning the events and helping to update the groups' online publicity. However, its not going to be my career. Real Estate will be.

So only going to classes and being bored that last couple months put me into a funk. Just a pure boredom, what am I going to do today, ugh guess I'll watch a movie kinda funk. And I love movies, but seriously I needed to go somewhere or do something. So Andrew told me to go visit my family!

So this weekend...
I got to Princeton Friday around lunch time and I spent the day with mom. We ate up town (even got balckberry pie from favorite pie place). Then we did some main street window shopping. We worked on a "artsy project" with photography I'm doing for someone. I can't say more they prolly will read my blog in the next day or so. Then Friday Night I got to go out with my girls. A couple of my girlfriends had to work, but a handful of us went out to eat and caught up! I have 6 of my really good friends that still live in my hometown, and it was AMAZING just gabbing away all night.

Saturday I drove from Princeton to a Orchard between my hometown and where my
sister lives. She lives an hour further away. So we met at the Orchard. We ate a lot of samples, apple picked, got some cider donuts, and carmel apples. I love Tanners Orchard, we went there a lot as a kid. I mean a lot. More than the average family from Princeton (Tanners is 40 mins away). We stopped at it on our way home from Peoria (where I went for CF doc and every time I was in the hospital as a kid). So Tanners is very nostalgic to me.

I thought it would be colder out, so my long sleeves and skinny jeans really made me uncomfortably hot in the fields picking apples and I prefer picking blueberries. But it was a great trip, love it every time!

  Pic on right: Me picking apples, boy was it sunny and hot out! 

We spent the whole day saturday just chatting on her couch and we watched a movie later that evening. We went to her church (She teaches at that private school) on Sunday and then ate a delcious local cafe for brunch, before I headed back to Princeton. I got to hangout with my parents and my friend Sarah once I was back in my hometown! Sarah came over for a little on Sunday because she had to work that night we all went out. So I was glad we could still hangout. Then mom made homemade mostaccioli for dinner before I had to get on the road again for the final 1.5 hour drive home!!! I ate sooo much that I'm sure it will help with my weight gaining. I'm down to 101 from 108 lbs from my stomach tube hole leaking. If I fall below triple digits I will cry. I haven't been below them in a year and never want to go back there!

So here I am at home currently. and whew after all that driving I'm a lil tuckered out. But, here are a couple of exciting things before I call it a night.

First, it was cool be able to bring my vest with and use it somewhere other than home! Remember I got a new smaller edition that can travel in a duffel with rolly wheels :-) Check out the post showing the difference in the two vest models. Read "Shake, Shake, Shake" here!

Pic left: Check it- me doing my vest at my parent's house!!!

and secondly, I have a PRE-SURGICAL appointment made for this Friday 10:30 to see my surgeon to schedule a time to fix my stomach tube hole! YAY! So ready for this. Not about the surgery itself, but for the "being fixed and it dones with" part. Can't wait! I'll keep you all posted!

Oh and my friend Amanda gets married this coming up Saturday! The Wedding is in the Wisconsin Dells, so Andrew and I are making a mini-vacation out of it. Our first wknd trip together (other than visiting  friends, etc)!!! Can't wait! And Amanda and Jake's Wedding is going to be a blast and beautiful!    and yes I will be rolling my vest along with me :-)