The Week's Events and SHOWER

Maaaan!!! Sorry for the week break followers! I've started pulmonary rehab....it's not that bad. Mostly I'm just bored. I'm not nifty like most other people who carry around their iPods and such. I have a solitaire game...which I did NOT bring and a blackberry which is essentially good for nothing. So I was bored out of mind most of the time. Only 23 sessions though! Tuesday was great because Ron and I hung out with his parents. They played wii and the laughs were just endless. I swear I'm the luckiest girl in the universe to be blessed with wonderful future in-laws. I can't wait to be Ron's wife. Gah. Not much happened the rest of the week. Friday night was pretty awesome. Ron and I decided to go to Karaoke night and I talked his best, Kathryn, into coming with. It was a blast! So nice to have us all hanging out together. We were all happy. Ron took me to see The Last Exorcism....it was good until the end. WEIRD. Left questions in my little dome piece. Sometimes it's not that difficult for me though...sadly. Today was the fundraising meeting. Still have a lot to get done but we're slowly but surely making progress ;) Having the family be so incredibly supportive is wonderful. Traci drove from Asheville straight to the meeting! That's about 3 hours! Kristina decided to come without her mom at first (I think) and then her mom wound up coming. I love having so much support. My papa taught his children well. He taught them to ALWAYS be there for one another. Even though he's no longer with us, his lessons and wishes are still living inside all of us. How marvelous. After the meeting, Danielle and I decided to eat at CrazyFire....can you say YUMMMYYYY??!! Oh my it was so delicious. NOw I'm just hanging at the house waiting for Ron to get off of work. My oh my I love that man. OH EM GEE. So today as I was going to take my shower to get ready for the meeting I noticed my shampoo was turned upside down....again. NOw, the roomie can use my stuff, as long as she asks. Recently my nerves have been worn pretty thin when it comes to her and that could just be me being me...because that's just how I am. It really ticked me off though. I'm broke as crap and her using my stuff means it will be empty twice as fast. I also noticed that my poof was on the floor of the tub upon turning on the water. I have noticed that's generally where hers ends up after her shower....meaning she probably used that too. That is crossing the line. FOR SURE. I mean, gross. How about you have some respect? This is just one little thing on top of many others. I've just had it with this chick. If she doesn't leave soon, I'm going to snap at her and I'm sure it won't end well. She never pays her rent on time is short with it usually and this wasn't even supposed to be this permanent. She was supposed to have been gone already. UGH. Ok that's all for now. Love to all.

Not Me Monday

This past week I did NOT: go drop my daughter off at daycare still in my jammies without having brushed my teeth. Not at all. I did NOT skimp on a shower because I still looked really great (and didn't smell either!) and just threw on a double coat of deodorant because of the extreme heat. I did NOT keep eating my food even though I knew it most certainly could mean losing it all later due to my stomach issues. I did NOT by any means drive to the Kmart across the street and unload the trash from my car into their trashcans sitting outside the front doors.....while being parked in the fire lane. And today you would not have caught me wetting paper towels to clean my daughter's diaper bum because I was too tired and out of breathe to walk all the way to the car where I had forgotten them. Not me. Never.

Day Off

Another weekend over. Friday night I basically unloaded everything that I've been feeling onto Ron. I've held a lot in and didn't really know what to do with all my feelings. I don't think I'm quite ready to discuss it in depth here...but soon. That's part of the healing process. I've been able to eat more than once a day and also am keeping it down! Amazing progress! I badly need to reach the doctor about that drug, domperidone, so I can hopefully start eating like a normal person soon. Saturday was pretty good. Spent the majority of it with Mira, my mom, and Andy. Dropped off my wedding dress at the consignment shop. That's pretty exciting. The owner said the only issue may be finding a girl that can fit into it! I'm sooo tiny :( Watched movies that night with Ron and just enjoyed each others company. Sunday I went to church. I met my mom, Mira, Trish, and aunt Maria there. Of course you know I cried during the very first song we sang! Darn emotions. And continued the tears throughout the service. My emotional state is just so very fragile all the time. Miracle looked at me and furrowed her brow like "Mom! What in the world??" Shortly after that, she was snoozing hardcore in aunt "Rena's" (Maria) arms. Slept through the entire service. Andy wound up popping in midway, which was nice. After church let out, we decided to have some lunch. I FINALLY got my Smithfield's Chicken and BBQ fix! Oh man....was it delish. Demetrius met us there to get Mira and she was chowing down so much, we sent her with a plate for the ride home! I tell ya, I love seeing that skinny minny eat. Does my heart good. After that, it was on to the fundraising meeting at 2pm at gmas. It was a great meeting, even though a lot of people were absent. We're really moving along :) I got to see the best which was bittersweet because we didn't have time for us really. Soon I'm sure! Then it was back to the house. Today I had Mira all day long because her daycare had a teacher workday. I was trying to plan something fun we could do that didn't involve us being in the heat, so I decided to take her to a kids museum. How about it's closed on Monday's?? Ugh. So we had lunch at OG (Olive Garden) with Amy, whom I haven't seen in FOREVER! Then we zoomed over to Target so I could buy her a movie to watch. Something other than the kids shows I have to endure when she's here. I picked Open Season....I thought she hadn't seen it and since she can quote Madagascar by heart, I figured it'd be right up her alley. I turn it on....and she immediately starts talking along with the movie. Fail. Her daddy already has that one. Oh well, lol. She loved it and that's all that matters really. She fell in LOVE with a Dora book that has this little iPod looking thing attached to it. It plays songs and the book has the words to read along with it. Of course I HAD t buy it! She was playing with it the entire way back home :) Had quite a late nap and didn't really want to get up. So now...I have down time. I won't have much from here on out seeing as how we have events for the Breathe Easy fund nearly every weekend and I'm starting pulmonary rehab tomorrow. Wish me luck! Visiting with the soon-to-be in laws tomorrow night. I'm pretty excited! Love to all!!!

My Weekend

Last night was very uneventful. I find myself really hating to be alone. Maybe it's because I feel my time is so limited. My mortality has creeped up and slapped me right across the face. Recently I thought about how nice it was at my mom's. At least there was always someone up in the mornings with me and I had Mira. Not that I don't LOVE it here with Ron....I suppose there are lots of reasons for my unwillingness to be solitary. Not having Miracle 24/7 is one. Having no money, which makes me a hermit for the moment. Everyone having a job and working, as if they need money to survive, wth?? LOL. I decided tonight Ron and I should go do something. I believe we'll be kicking it at Downtown Bar and Grill for a bit. It will just be nice to get out together. We haven't done that in forever. Then tomorrow night, we're going to the movies! Excitement indeed. I'm pretty sure tomorrow I'll be over at my mom's visiting with them and Mira because she's keeping her Saturday night. Then Sunday, we're going to church. I personally can't wait to go. I really hope the Lord speaks through Martin and gets through to me. So far, the only place I feel at home at and I really get the message is at mine and Meet's old church. Awkward....haha. Hmmm, OH! Sunday night going to Les' Mary-Kay party at 8 pm. Should be fun :) Just wish I had some dollars to buy something. Soon enough. Today I applied at Wake Tech for Medical Billing and Coding. I have to do something. Sitting around is really killing me at the moment. Also, Monday I start pulmonary rehab. Yay! I'll probably write more later. Love to all.

Typical Goings On

The rest of last night went well....other than the pain I was in from moving around so much! I'm so used to sitting in that bed at the hospital all that activity yesterday had me sore. So my dad came over to visit and we went to Kmart for a few house things I needed and then we went to the mall (in the pouring rain I might add) so I could return some pants. How about I definitely walked right by the store I needed to go to all the way to the end of the mall AND went to the 2nd level only to figure out I passed it already. A long time ago. Geez. When I finally got to the store, they tried to tell me they couldn't do the return. Well, at 1st I was ok with it, mainly because I was hurting so badly. Then I realized, no way! This most certainly wasn't even my fault. So the manager let me slide and gave me the return. Then dad dropped me off and I ate some more, weighed myself (90 lbs!!) and waited for my love to come home. This morning I had to take Miracle to the doctor because she's had a little cold for about a week now. The doc said no biggie just keep an eye on it. After that, me and my om went to Cook Out...flippin YUM...then came home and finished up Kick Ass. Such a great movie. Lots of cussing and violence, but great movie. After that, it was off to the pharmacy for me to get my enzymes and some benedryl for the little. How about my cousin didn't even realize I was out of the hospital?! I mean, she just started college and she's working full time so she has a ton going on...on top of dealing with my fundraising stuff. She works at the pharmacy and when she saw me she was a bit surprised, lol. I totally can't wait for September 5th. BIG event through Lazyday.com for me and fundraising at the Longbranch in Raleigh. It's going to be awesome! Mad props to Tommy who's organized all of it. I hung out with Katy for a bit today and picked Mira up early. Mainly because when I dropped her off she had a fit. Tore me up, I almost cried. I hate that she seems to not like daycare now. I know she'll adjust. She's going through so much and isn't able to put into words how she feels and doesn't know the first thing about how to deal with what's going on. Poor thing. Now....I'm just washing clothes and chillin. Getting on the scale again in a few. I got an email today saying I have an appt on August 31st for testing (something about the tummy wrap no doubt) and then another appt for surgery on September 27th. Maybe I can be 100 lbs by then! Pray for me!!! I'm definitely working hard on it. Tonight is movie night for Ron and his best so I'm alone and missing him quite a bit. I think I'll surprise him and ask to go to karaoke tomorrow night. I know he'd love that. Love to all.

Home Again!

Welp, I managed to annoy my doc enough for him to let me go home last night. He wasn't very pleased with me but did tell me he tries to be accommodating to his patients. His intern informed me that the surgeon that is said to do the g-j tube placement also would like to do a tummy wrap at the same time...the medical term is a nissen fundoplication. That was a huge shock to me but I can sort of understand only wanting to open me once for a stomach issue. The dr. isn't quite sure it's the best route to go. So he sent me home and I'm anxiously awaiting his call for instructions. Last night it was great to be home. The lovely Trish and Shane took me home, thanks guys!! I got to sit on mine and Ron's new couch and shower in my own bathroom....it was wonderful. Even though I'm sure I'll be back in shortly, I feel it was worth it. Today Miracle's daddy dropped her off with me around 8 am and I took her to daycare. I missed her so much. He asked that I make an appt with her dr. because she's had a cough/cold for a bit now and he just wants to be sure all's well. So tomorrow morning at 10:10 that's what me and momma are doing. Ron and I got some grocery shopping done and went to Lowe's where he bought me and Mira 2 separate hampers for our clothes. Ya know you're an adult when that gets you excited. "YESSS!!! I can keep me and my daughter's clothes separate now!" Hilarious. So now Ron's gone to work and I'm counting down the time to go get the little from daycare. Maybe going to see Katy later. Love to all and I'll update when I know something!

GOING NUTS

SO I had my barium swallow test done today...at 2 pm. Turns out I have reflux! I knew this already but we needed proof and the paperwork for it. The barium was atrocious. Definitely almost threw up on the equipment, lol. I also found out that the culprit of my nausea is due to my stomach not working properly at all. It doesn't really contract to push my food down to digest it. So my food just sits and I get nauseated. There's a medicine that is not fda approved that I will start taking to help correct this problem. It's similar to reglan, but not as hard on the patient. It's called domperidone. You can get it in Canada and it's relatively cheap. I can't wait to be able to eat and keep all my food down. I swear cf affects everything. Absolutely. When I got back to my room Ron told me he had to leave to get ready for some stuff at home. I just realized I can't stay any longer this time. I just can't. I'm going crazy. I talked to the docs and they told me if I'm not on the schedule for g-j tube placement tomorrow, they'll let me go. Pray!!! My last IV med is at 6 pm tonight...but when you're on here, they make you keep IV access for the duration. So, I'll still have my needle. Gosh I'm sick of this bed, this room, these interruptions....the list goes on and on. I need my Miracle. NOW. I miss her so much. I know she misses me too. She has to have some sort of feelings going on and be confused about where I keep disappearing to. Being only 2, that's tough. For now, the lovely Trish and my redneck Shane are on the way. I feel like the bestie has slipped away from me. College and all that. Super glad she's having fun and enjoying her experience so far but I feel a little down. Oh well. She knows I love her. She has a wonderful head on her shoulders and I know she is her own woman. I'll update later if something changes. Love you all.

Lifted High

Another day in the hospital! I was told that I couldn't eat or drink anything after 12 am last night for a liquid gastric emptying "sometime" today. LOL. That sounds promising right? So I was wheeled down there and swallowed nuclear apple juice and got scanned after 1 minute, 5 minutes, 15 minutes, 30 minutes, 1 hour, and 1 hour and a half. Whew. Definitely not invasive but sort of time consuming. I saw the dr. today and he's still singing the same tune. Not really wanting to place another g-j tube. Grrrr. We'll see what the test says. Oh yeah, after I'm down there the tech tells me the longest I should have to go without eating or drinking is 4 hours. Hahaha. Good stuff. I went about 12. Tomorrow morning I'll do the solid gastric emptying which is done with nuclear eggs. Exciting indeed! Ron's good friend Tommy is doing an event for me at the LongBranch on September 5th. I'm definitely going just to mainly be there because it's being done for me. I'll probably speak on stage after all the excitement. Should be a fun time. Weird with no drinking but it's not good for me anyway. Yesterday was kind of a down day. I ate a marvelous breakfast (eggs, potatoes, cheese biscuits, AND tomato gravy) only to throw it up later in the day. I felt defeated and trapped in this room. I wouldn't take calls or text people back. I'm lots better today though. Smiles and all! Just had a wonderful conversation with the social worker. He's pretty chill. My doc informed me today that I'll get one more day of IV's then I'm off until the next flair up!! Hopefully it will be longer this time. Now if we could just figure out the tube issue, we'd be golden. Mostly, I just want to be home. My feeding tube is no longer giving me pain and I'm willing to go through another placement. I think my dad is trying to visit tonight :) I'll keep updating as news is available. Also, I'm posting a picture of my super heroes that are fundraising for me. Love you all.


My team of Super Heroes!!!

My Ring

My ring! Trust me, this picture does not do it justice. It's not a diamond due to the fact that I don't like being average or ordinary. I specifically told him early on that I don't dig diamonds. The band looks almost like a crown, which is perfect because he calls me his Queen. Man, I love him. I must say, he did very well. Thanks to the girls who helped as well: Danielle and Kat. I love you guys!! I'll try to get the proposal video up here somehow.

New news.

Welp, turns out the infection my dr. thought I had...wasn't an infection at all. It was actually intussusception. That is the telescoping of one segment of intestine into another. Yep. So they decided to pull out the g-j tube and replace it with just a g tube. Upon putting in the new g tube they flushed it with contrast to see if by pulling out the old one it had pulled the intestine back to the way it should be. Today I got the news that my intestine is good. Started me out on a liquid diet yesterday and I've moved on to full liquid today. Tomorrow I've heard I can go back to a regular diet, which is awesome....because ya girl is HUNGRY!! Other things to discuss: my dr. is not liking that I'm struggling so much already with another lung flair up and the tube issue. This is my 3rd feeding tube. He feels we just need to get the ball rolling asap on transplant. I guess he's trying to convince the transplant team to move forward with me anyway. Pretty scary stuff. See, transplant wants me to have a g-j tube. It's better because the j tube goes directly into my intestine while the g tube goes to just my stomach. So now I have a g tube, meaning the possibility of severe reflux and aspiration are likely. The dr. is setting up a gastric emptying study for me to see how my reflux does and see how my tummy empties. This will determine whether they even want to try doing tube feeds with the g tube. I already deal with lots of reflux so I feel the g tube is not a good idea. If I do require another g-j tube, the surgical team will be performing the procedure. Gah. So.....I'm a fiance now!! My marvelous bf Ron popped the question the night before I was set to come into the hospital. Took me by total surprise. He's such an amazing person. I thank God everyday for sending him my way. I didn't know love could be this wonderful. I feel like he loves me unconditionally, which is typically saved for moms and dads ya know? I pray the Lord stays strong in our relationship and stays with him for the tough road ahead. I know it isn't easy. I had visits from my mom, cousin Traci, and her mom Sissey today. It's been slow but that's better than being poked and prodded! My bestie is going off to college on Sunday :( I won't be there to see her off and I wish I could see her over the weekend before she goes. Goodness....I'm tearing up already. That girl has been such a rock for me. She is truly the best friend I've ever had. Such a big heart and just as silly as I am. I love her smart-assness (yep, you see it) too. She's just incredible. I love you Danielle and I know you will do amazing at college. Everyday you make me proud. I'm out for now. Love to all.

EXHAUSTED

Wow. Yesterday was indeed a long day. Got to Duke around 9:30 am and left about 6 pm. I am NEVER agreeing to that many appts in one day again! The 10:15 am bone density scan went fine, although I don't know the results yet. After that, it was the "What to Expect With Transplant" class with my mom at 11:30 am. Very informative and I'm super happy they have these classes for us. It was an extremely tiny room and all of us in there were pre-transplant. Most of them had their lovely o2 in haul and you could hear the whistling from the air and them breathing in and out. Then came the coughs. All of us are so used to it we all just sat and acted as if nothing was going on....because to us, nothing IS going on. How wonderful it was to cough and clear our throats with no worry of people glaring like we have some contagious disease and without hearing "Are you ok??". I know some people mean well and we definitely sound awful when we get way into the deep coughing, but it does annoy us sometimes. I felt so at home. These people know me without ever speaking a word. So comforting. Next, it was on to the cf appt. I was given a chest x-ray which I'm assuming is the same as always, bad, lol. The dr. had a serious conversation with me about how I LOOK very healthy in person but on paper, I'm really sick. Getting out of breath really bad again, can't seem to stay off of IV's. Bottom line, I HAVE to gain this weight and complete rehab. Transplant is a huge necessity right now but I can't move forward until the weight gain and the rehab. A little added stress but what's a little more, right? Also, I addressed the severe pain I STILL have over a week after the feeding tube incident. He determined it's cellulitis, an infection. Jeepers! So he started me on an antibiotic and told me if it doesn't seem to be getting better by the close of the weekend, I will be admitted. So let's all pray it gets better. Did a little walking to assess my ability to keep my sats up. I did pretty well. Whew....still had one more appt with the transplant doc. So we headed over to Duke South. Btw....the hallway to get there from the parking garage is HELLA long. I decided against a wheelchair on the way in and definitely was singing a different tune on the way out! We were wating forever and to pass the time they decided to draw some blood and attempt to get a blood gas. Blood gas was a bust and extremely painful. Thankfully, the RT isn't into torture and since she didn't get it the first try, she let me off the hook :) I was scheduled for yet another x-ray and another breathing test, but since I had JUST had those, I got to skip it. It's the little things. Finally, the dr. was ready for me. He pretty much reiterated what my lung doc said about it being crucial to gain the weight and finishing rehab. So....those are my goals. Today all I did was rest. I was so worn out from yesterday. I have to ready for this weekend! LOTS to do and man am I excited! Photoshoot with the best, shopping more than once tomorrow (HECK YESSS!!!), and Sunday is the fundraising meeting and then girl's day with the best and the rents!! How fun :) That's all for right now. Love to everyone!!!

My Life

Just wanted to post a new picture of my babygirl, Miracle Jade. She makes it all worth it. My main reason to continue this journey and fight so hard. It's all for you baby.

Back to happy April?

So, I've had a rough couple of days. Just been kind of down lately because I wish I was ready for transplant. Even though it's scary the waiting really sucks. I had Mira for a night and just realized I'm still not healthy enough to keep her full time. I had to ask her daddy to continue keeping her. He of course had no problems with it...he's been great through out this entire thing so far. She got into daycare and we decided he will drop her off with me in the mornings and I will be the one to take her back and forth to daycare. This way, she can still spend some time with me. Not my ideal situation but better than not seeing her at all. She's just incredible. She's been singing and just being the big personality she's always been. Ron got a video of me picking her up from her first full day at daycare. I'll try to post it later :) Yesterday Ron and I went on the hunt for a couch. We found one we both really like so I guess he'll be getting it sometime soon. Then on to an area rug, a floor lamp, and other decorations!! Can you tell I'm excited? Gosh, I'm such a grown-up. LOL. I was in quite a bit of pain last night and this morning. Somehow managed to have an upset stomach as well today so that was no fun. Now it's approaching nighttime and I'm waiting on a visit from my dad. He visits more lately. Tomorrow= BUSY day. Three appt in Durham. CRAZZZYYYY!!! I'll be with my mom the whole time though which is a relief. I really don't know what I'd do without her. The madness doesn't stop there. Tax free weekend which means (DUH), I'm going to SHOP, Sat I have a photoshoot with the best, Sun we have the fundraising meeting then after that the girls are getting mani/pedis. Fun filled weekend. Can't wait! I'll be posting pics.