I’m late again :/Β 

Hey!

Today ended well I got to see one of my good friends for a while and she visited with me and I finally got some stuff situated because my doctor came in to talk to me….. 

Anyway I’m pretty excited because I’m prob out tomorrow and can get back to my “normal” life and see my furrbabies and be with my husband πŸ™‚ what are the first things I want to do once outta here…. take a needless shower and Lay in my tub at home and get back to my health routine while adding in the two key things to my routine and sticking to it…..

It’s easy to fall off track it’s not like I’m just sick for a month or a few months it’s for life so it’s very important for me to give myself a little credit when maybe I fall off the bandwagon but to always remember to get right back on again. Duke scheduled me an appt with the main Doc Doctor Grey for the 24th I believe just before going to NY that works perfect tune-up done and check up and pfts done πŸ™‚ yayy 

I’m petty excited too because one of my good friends is getting me a nice Pft machine so I can monitor my lung functions and all that so when I go to the doctors I won’t be surprised and when starting to get sick I can catch it earlier and get in and get out. 

I feel like I am refreshed in the sense of doing all I need to do to get where I need to be. It hasn’t been easy switching hospitals with all new doctors and all…. here at Duke they do things differently it’s a different team and doctors every week where I’m from I had my one doctor who handled everything and he was amazing and I never had to worry with him. I feel at least I have a strong relationship with the nurses on 7800(the cf floor) and the techs that’s very very important because they are the ones who spend the most time with you and are with you Day in and day out….. 

I just wanted to update everyone on tube feeding I ran them 10hrs last night but they caused cramping and uncomfortableness but I kept them running to make sure the tube is working and I got the feeds I needed and to show I’m doing everything possible to gain. But bad part about it was hardly was able to eat today because feeds filled my stomach up too much so tonight we decided to hold off and see what I can take in food wise…. I will update when I get on more of a schedule and know more…. I should go home today at least that’s what I’m rooting for I feel I’m ready! 

Wish me luck much love y’all and sorry so late again tomorrow night or tonight rather I need to post a bit earlier to catch up….

Love you guys lots thanks for believing in me and knowing I can do this 

❀️❀️❀️

Omgosh the day got ahead of meΒ 

Hey 

I’ve been trying to post even with being in the hospital but yesterday kinda got away from me. I’m trying to concentrate really hard on doing everything possible to prepare myself to qualify for transplant. 

At this point in time I am not eligible because of weight and sugars issues. My weight I am working very very hard on and have even started feeding back up tonight. This is not easy for most of you who Know about transplant who follow me they have a lot of things you have to do and testing you have to pass before you even qualify to get lungs then you have to go in front of a board that will say yayy or nayy then you can start testing and all that to hopefully be sick enough and healthy enough within your window of time to have the transplant. 

I’m pretty happy because I feel I’ve finally gotten a grasp or should I say good grasp on my blood sugars and have been getting good numbers. My nurses and techs seem impressed by most the numbers and it’s weird having the car diabetes team come into my room in the AM and instead of saying what do we need to change this isn’t working they came in yesterday morning saying we won’t change anything for now numbers seem pretty stable….. I know this is long but I kinda wanted to explain where I am with me health and express how much I really want this. Another thing transplant looks at is that you have a strong support system I feel I do and I have all of you to thank for that…. 

I’m excited because today I may go home. May have to finish from home but I really just want to get home. The stress of being in here is just too much sometimes. I’m excited because about 10 days from now I think it is I go home to NY to visit with my family and friends. I’m super super excited and everyone has plans to do fun things with me. 

I will get to see my nephew and meet my little niece for the first time when I go home. My sister had her about a week after we moved here to NC! I really wanted to be there for when she was born but it didn’t work out that way…. my mom and I are hopefully gonna have some mom and me time and she said we will do nails and go see a movie and spend quality time I’m super excited for this. A lot of my friends have already reached out to me and asked to get lunch and a couple want to throw a “we miss Ashley” party for me. 

Well anyway that’s kinda my focus right now. I feel overwhelmed because I don’t want to miss my window and I want to do everything they want me to and I want them to see I want and need this transplant…. it’s also hard thinking about being sick enough but not too sick to get everything done. Also I want to keep my original lungs as long as humanly possible. It’s just all really hard I have sooo many thoughts running through my head and honestly I’m scared. 

Lung transplant is not a cure for CF. it is like trading one disease for another they say. I just won’t have the lung problems hopefully (some do still have problems and have to be hospitalized frequently) but it does buy time :/  I guess it’s normal to have all these mixed emotions and be scared. You have to get broncs and worry about rejection that scares me but two of my close friends have had one and do wonderful and that gives me hope. I just want a cure and we really really need one. 

They have really come a long way and I am very grateful for that but I guess the worry just never goes away. I want to grow old with my husband and see my Neice and my Nephew grow up and be a wonderful Auntie to them. One of the biggest fears I have is my neice and nephew not remembering me. Just knowing me as the Aunt who was very sick…. that scares me 😳 but I have a lot of faith and I know God has a plan for us all so that brings me comfort most the time…. well sorry this is so long and so many different thoughts and emotions in this blog but I just have a lot goin on…. prayers needed at this time for sure hope everyone is well and we shall talk again tonight because I missed writing yesterday I will prob write another blog tonight have a great day y’all!!! 

❀️❀️❀️πŸ’ͺ🏻πŸ’ͺ🏻πŸ’ͺ🏻

Accepting life as it is

Hmmm…. where to start. Today has been far from easy but I guess if all makes me stronger they say right? 

Start with the good news… I got the old gjtube out and new gjtube in that’s a start πŸ™‚ 

I met a really really sweet nurse today his name was Erin! He was awesome actually reminded me much of my husband. He was kind and caring and really all about the patient’s comfort and care before, during and after my procedure. But that’s how it’s suppose to be right? Well think again even though my morning started well and I now have a new tube which I hope will work good for me that’s not how all medical professionals handle their patients…. 

Today went from great and feeling optimistic and alive to crying on my knees for someone to just listen to me! Just listen to my concerns and care! I won’t get all into detail cause honestly it would be an hr long blog but if you follow me on fb it explains and sums it up pretty well. Let’s put it this way the doctors decide what procedures they think need to be done and if you disagree or don’t do you are seen as “non-compliant” the doctors decide how much pain you’re in and if you “deserve” to have a pain med to ease the pain and if you don’t agree or they don’t take care of you and you ask you are a “drug seeker”!!! The doctors decide wether you live or die and you spend your life begging to be treated with some damn respect begging for some relief and begging to live! Doctors(some not all, but I have ran into quit a few) don’t listen to the patients and advocate and treat you they are too busy making their paycheck! It’s sad I never thought that I would be literally on my knees begging for them to see how much I want to live and being told I was heading towards dying! I was always brought up that I was strong and could do everything everyone else does and that I would beat this illness that if I fought hard enough it could never catch me for long enough to kill me…. it’s sad but it’s just not reality sorry if this point sounds depressing but this needs to be said I had a doctor say another uncalled for thing to me today his words were…..

“I don’t know if I can get the doctor to come talk to you, you know they work their 9 to 5 then go home to their families” the sh** doctors say!?! R u fucking kidding me excuse my French!!! Honestly I’ve never felt like my legs were jello like this before, I literally fell to my knees! R u kidding “Go home to their families!!!! Really!!!! Do I go home to my family!?!? No I sit here in pain wondering if it’s worth it to ring that call bed to get that med that gives me relief for about an hr to an hr and a half and can’t have more for four to six hrs so you still sit in two to four hrs of pain in between…. If it’s worth it to call out when you need a nausea med and they come as they please and you decide it would be easier to just throw up to get a little relief then to beg for a nausea med that once again the doctors are not wanting to give…. Is this seriously life!?!

I’m sorry for this Depressing post! And I don’t mean to scare people who maybe aren’t as sick or haven’t went through this but it’s true and I honestly think it needs to be broadcasted and exposed so it can change! 

This is not how chronically ill patients should be treated and this is not okay! And I won’t stand for it and for all my cf mom’s who are following this blog please know you are strong and I did not write this to discourage anyone but this is the brutal truth as you get older and it needs to be addressed. And I plan to fight this tooth and nail until I can break through to these doctors and others who are chronically ill maybe won’t have to go through what I have…. honestly thinking I am thinking of taking legal stance on this. I won’t stop until I know no one else cfers or anyone who is chronically ill will be treated the way I have been treated I’m sure this is gonna be a big thing cause I don’t plan on stopping I will advocate until I take my last breath!!! 

Anyway I think that doctor felt bad for what he said once I responded the way I did one tear rolled down his face on the one side! Oh so you do have feelings in there doctor!!! 

I’m gonna go rest because I’m honestly in the most pain I’ve been in in a very very long time but I hope if any nurses or doctors or anyone in the medical field who is following my story and my life sees this I hope you think twice before you tell a patient they don’t have pain or you won’t treat their pain or before you make some sarcastic dumb comment like this doctor did IT HURTS WE HURT ENOUGH!!! 

Night all I have to sleep I am so sick so tired and lost my voice from screaming at this doctor for two hrs straight for the way I was being treated 

Goodnight to you all and I hope you all had a better day then me and again sorry if this post isn’t upbeat but I always keep it real and today was just one of those days 

The chronically ill girl 

Made it through the day

Today was a hard one. Started out with a visit from my husband but I was a bit irritable and upset that it ended with him leaving and me being alone. Guess that’s my fault right?! One thing I wish I could get across to some people is how hard it is to be happy and to be smiling and all when you are sooo sick the pain and nausea takes over…. I feel pretty bad about today because I would have loved to visit and have some lunch(if I could eat anything, I was at least going to try) with my hunnie. I tried to explain afterwards how if I’m irratible just to let it go…. I know I’ve also gotten this way with others I love too when they have visited me in the hospital when I was very ill like my Mom and my Nana. It’s so hard and I’m mad at myself for it! The people who love you the most and are here for you the most are the ones we take it all out on! For that I’m truly sorry! 

Today sucked to say the least I barely ate anything which is not good at all especially when this sick and underweight. I’m trying to eat every time they give me a nausea med and I feel like I may be a little bit better I try to eat something but today I just feel like a failure all around 😦 it’s okay because we all have our bad days and I’m willing to accept that. I just want to feel better! I just want to go home! 

One good thing that happened today was I met another one of my friends friends Stephen! He’s pretty cool we walked the halls and talked the talk! It’s always nice to talk to someone who knows exactly what you are going through and what you are heading towards in your future too! He had a double lung transplant August 10th of 2016, last year! I’m so happy for him and no rejection at all so he is just in for its cause sometimes you still need them after transplant. At this point in time my doctors have told me I am not eligible for transplant so I’m scared but I deal. Oh and let me clarify cfers are not suppose to be together because we can get each other sick so of course I had my mask on and kept my distance too πŸ™‚ we can’t get “normal”people with “normal” immune systems sick just other people with CF. So I always wear a mask. Some cfers choice not to, and not to worry about it…. to each their own. I really enjoyed our conversation too bad it couldn’t go on longer cause I had to be hooked to Iv antibiotics shortly after I met up with him…. I don’t get much time between Ivs maybe an hour :/

Anyway I had to get the barium tonight through my tube for my procedure tomorrow morning at 730am! So much for putting it through the tube so I didn’t have to taste it because not even a minute after she pushed it through I was throwing it all up and tasted that and throw up worst thing ever!!! Sorry for the details but it sucks!!! 

 I’m super anxious because there is always a chance at my lung function and my condition for me to not come out able to breathe on my own. This is very scary and happened to me last time they went in and did a biopsy on my lungs so I’m a bit scared. It was about two or three decembers ago and I ended up on hospice and it was the scariest point in my life 😦 ugh but I am keeping the faith please pray for me and I’ll keep you all posted 

Sorry to cut this blog short but I’m extremely sick and have to be up early for that procedure. So I guess I can say I made it through another day now let’s hope for a working gjtube and successful procedure so I can start my feedings back up and gain some weight!!! Let’s go! 

I’m sure I won’t sleep because sleep is just a five letter word to me now 😦 but I’m gonna try wish me luck y’all see you on the flip side!!! 

All my love Always and Forever,

Ashley πŸ™‚ 

Sham and Moose

Hey!!! 

So I decided I’d share the story of Sham and Moose and where are nicknames for each other came from :):):) 

Thomas started to call me little sham because when I’m feeling okay I can eat a ton like a sham but still be little lol! Hence “little Sham” with cf we are usually very hungry. One we don’t digest all our nutrients and two we can eat a lot before becoming full… 

At this point in time I’m struggling and in the hospital and just wishing I could eat like a sham right now. My husband Thomas gave me that name when we first met and before I got this sick…. so yeah the name fit but now I kinda can’t eat a lot but I’ll get there… can’t wait till Tuesday to get a working feeding tube this will help with my nutritional status. The doctor informed Thomas and I today that I needed to be at least a 17 Bmi a “normal” person should have a Bmi of 20 or 21ish I’m getting there I’m a bit under the 17 but I believe I will get there…. sorry a little side tracked but that brings me to how Thomas got his name πŸ™‚

Thomas is just a Moose. It’s plain and simple. Hahaa I think you can all figure out why he’s called Moose actually Tommoose!!! lol he’s 6’7 225pounds…. so I think that explains itself lol! Yes Thomas is still Tommoose he is healthy and strong and I think he’ll always be a Moose. I love the name I picked for him and it seemed to have stuck. Everyone just started calling him Moose :):):) I think he likes his name.

It’s funny cause tonight I was thinking Omgosh I haven’t written my blog yet today and I just don’t have a clue what I’m going to write about but somehow things just fall into place! 

I was watching American Ninja Warrior and I ended up texting Moose to tell him I was watching and he said to me “know what would be awesome, to be on that show” and what’s sooo funny about that is I was thinking that same exact thing when I was watching. 

I’m just so proud and amazed by my husband every day and for everything he does and how anything he sets his mind to he does!!! It’s truly amazing! I have all the faith in him that if he trained he could do it!!! How cool would that be!?! Especially since our story I’m sure would fit right in…. I mean all the ninja warriors have these awesome stories and reasons for them wanting to compete and win! I know I’d be Thomas’s reason to win!!! Hmmm thinking about this tonight let me know your thoughts!!! πŸ’­ πŸ’­ πŸ’­ 
In a few mins my nurse will be in. I’m pretty sick so I’m waiting for my meds around 12 before bed so I’m gonna go and I will write again tomorrow hope you’re enjoying hearing about my crazy life stay strong all!!! Hope I can continue to inspire you!!! 

Love Always and Forever,

Lilsham :):):) β€οΈβ€οΈβ€οΈπŸ˜‚πŸ₯ŠπŸ₯ŠπŸ₯Š

Another hospital dayΒ 

Hey everyone!!! 

My post is a bit late again lol but as long as I get it done before 12 I’m happy. 

I spent the day with my hubs it was nice I slept a lot though. I didn’t sleep the night before I had too much on my mind. It kinda cool 😎 here at the hospital they now have a minister here to talk to people 24 7. I’m very happy about this because I needed to just talk and get some feelings out…. 

I asked to have the minister come talk to me about 3am she stayed till about 430am. She said I was inspiring and “spunky” it’s kinda funny because both ministers I have talked to at the hospital this hospital stay have used the word spunky to describe me…. I like it πŸ™‚ anyway I got a bunch of feelings out! One question I asked the minister does she think dying is painful…. for most people the subject of “death” is very uncomfortable for me it’s something that sits in the back of my mind. The minister told me that she has been present several times when people die and it doesn’t seem to be painful she thinks it’s more peaceful…. this gave me some comfort to know… 

it’s hard being In the hospital like this every few weeks to a month. I mean this time around I think I went two months out of the hospital! That’s a record for me because I haven’t went two months in a couple years now I believe. 

I’ve also been thinking that maybe if I could have my dog here with me it could make me feel better. For those of you who do not know me well I have a dog, his name is Razkal(Rascal) he’s a pug! He’s the sweetest darn thing! I’ve had him ever since he was two months old he just turned 10 the 1st of August :):):) he’s the best. I’ve been looking into Turing him into a service dog or something like it so maybe my husband could bring him to the hospital to visit me!!! Wouldn’t that be amazing?!? I think so!!! It would keep my spirits up and my poor little guy wouldn’t have to miss mommy too much so I will keep you all posted if he does become certified!!! I also have an orange kitty I’ve had her since about a year and she’s 7years old love her dearly too but she could careless how long I’m gone :p I was told Razkal would have to know how to sit, lay, and stay he knows all those plus some like paw other paw and all…. it’s really cool he also runs circles around me when I’m starting to get sick. He lets me know it’s super cool so I think making him a therapy or service dog may be doable…..

Today has been a chill day. Kinda just eat and sleep and repeat for me that’s the best medicine at this time!!! My stomach has been extremely sick from all the iv antibiots though and it’s terrible. When you are on iv antibiotics they tend to tear your stomach up… the doctors are sending out a stool just to check for cdiff. Cdiff is a bacteria in your stool you can get from too many iv antibiotics so they just wanted to check(sorry for the nasty details just trying to educate everyone :p) I know it’s not cdiff because I have had patients with it when I worked at the hospital before I got too sick to work. If you didn’t know it’s got a very very gross distinctive smell. But anyway they sent a sample out so we should know asap 

Well 12 just now so I’m gonna end this blog for now plus my meds are due then I’m gonna try to get a tiny bit of sleep tonight. 

Oh yeah p.s. Got a new doctor today and he was amazing caring, sweet, nice and smart he’s head here of cf teams on floors his name is Doc Marshall and I won’t forget because he was amazing he will be with me through the end of my stay he’s on for two weeks wooo hooo and tomorrow Thomas and I plan on talking to him further about all the upsettness the other day and reporting that other doctor!

Well by for now all!!!

All my love always and forever 

Ashley aka little sham(that’s my nickname and my husband’s is Moose) but I’ll save hat for another blog so I guess you’ll have to keep on reading and I was to thank everyone who is following me and hope you all are enjoying the ride!!! 

Again please leave me some feedback and any questions and or concerns I will answer you right back either in a post message or the next blog xox ❀️❀️❀️😝

Late night blogΒ 

Hey everyone πŸ‘‹πŸ» 

Sorry I haven’t wrote today until now. But at least I can say it’s been a good day as far as company. My hubs got to be with me all day and one of my best friends Robin came for most the afternoon too :):):) 

Today I got to spend the day with Thomas, it was really sweet one of his Sargents who he works for had heard about me being in the hospital and pretty sick and told him he could spend the day with me!!! There still are good people in this world. Oh for those of you who may not know me that well Thomas is my husband. We’ve been together six years in Oct and three years married this Oct. ❀️❀️❀️

I guess now would be the time to tell you about the best day of my entire life!!! The day I married my soulmate, my best friend my everything πŸ™‚ our wedding date was magical from the beginning until the end. I remember it like it was yesterday I woke up at about 7am and my girlfriend Steph one of my bestest friends picked me up from my house to go to the venue to meet all the other girls. I had eight bridesmaids :):):) I remember just praying to God to just give me this one special day to feel just wonderful and boy did he answer my prayers I felt amazing from the min I woke to the min the clock hit 12midnight and my wedding day was sadly over 😒 it was crazy because God really gave me just that one day I got ready and took pics it was a bit exhausting but somehow I got a second wind πŸ™‚ I walked down the aisle to my husband at 6pm sharp as I walked down the aisle I could feel every peice of my body just in pure happiness nothing could tear me down. He was so handsome. I mean he always was but that day he just looked sooo handsome! πŸ™‚ we said our vows and it was like heaven. Just the happiest moment of my life. We would be forever each other’s love through God πŸ™‚ we partied the night away danced the whole night no oxygen no breathing meds nothing I made it through the whole night in one peice. I led all the dances and just felt and looked amazing πŸ™‚ 

But as I said it was so funny cause God gave me just that day as the clock hit 12midnight it was as if I turned into a pumpkin lol I needed my oxygen was out of breathe and needed rest I was sooo exhausted…. I didn’t care though because I was still so in love and happy that I had the most amazing wedding and that God heard my prayer and gave me that. For that I’ll always be forever grateful.

Some people think it’s about how long you live. I don’t believe that not one bit! I truly believe it’s how you live and that you live. Some people may have long lives but have never lived! I have lived! Idk when will be my time but when it is I was happy. I had an amazing life, an amazing wedding, an amazing husband and I know I loved and lived!!! 

It was funny recently I said to ny husband “I forgot to mention you in my blog babe” we both kinda giggles then Thomas said to me “it’s fine you don’t need to mention me” and smiled at me! In other words he was saying you better mention me!!! :p too funny 

Anyway today was a great day and I just thought it would be the perfect opportunity in my blog to talk about how I fell in love 😍 I know it’s a little off topic but Thomas is a HUGE part of my life obviously and in my future blogs I’m sure I’ll mention him maybe if he’s good 🀣🀣🀣 but yeah wanted you to know who I was talking about just in case you don’t know me and are following my blogs :):):) 

Well I have to get going it’s almost med time and I’ve been having some major nausea tonight…. there is a new doctor tomorrow thank Gosh!!! So I am looking forward to tomorrow have a great night y’all 

Live and love your life and never take your loved ones for granted tell them you love them they need to hear it!!! Xox 

Love always and forever, ❀️❀️❀️ 

Me 😜