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This is your very first post. Click the Edit link to modify or delete it, or start a new post. If you like, use this post to tell readers why you started this blog and what you plan to do with it.
Sometimes it feels like everything is crashing in all at once! That’s because it kinda is when it rains it pours as they say and that statement couldn’t be anymore true!
I woke from a nap actually just a little bit ago but thankful Thomas is home and starts nights tomorrow so he’s here with me which it helps waking up to him. I hug him let him know I feel anxious and he holds me sounds such silly huh? Well it works for me Thomas is my comfort when I’m with him I can’t even really be scared he takes all that away and I’m lucky. I also woke to two dear friends writing me once being Vince. He’s one of my bestest friends ever and never ever gives up on me. In the message I read when I woke(that I needed that God knew I needed and Vince knew I needed) just said how much he loves and cares for me and is proud of me and knows how hard things can be with what I’m going through just to know he knows Is comfort again thank goodness for Vince!!!
I also had a text from both my Nan and my Mom. Nan says prayers for me and I rely on those!!! Lol I just have to have them they make me just KNOW I’M OKAY AND MY NAN KNOWS IT 🙂 for that I’m thankful. My mom had text me too saying that she’ll schedule her flight here for the dreadful paperwork hospice appt but it gave me comfort to know she will be coming. It gave me comfort that she got the strength in her to write me that she’ll be there for me for another(worst news, worst day of my life) kinda scenario…. this is what keeps us going!
Everyone finds comfort differently mine is def through friends and family and words! Another beautiful friend of mine wrote my Pm that she was looking into a couple things to help me with some issues I’ve been having with dry skin and itchy skin and things like that from meds again she brought me such comfort just writing me that she was thinking of me and what could help for me….. I’m sharing all this because it all helps and people are just amazing!!!
As I said in my last post and many post before this one is that we are here to be here for each other that’s why we are here!!! Because one God won’t give us anything that is too much to handle and if it seems it is he’ll give us the tools we need to get by!!! Always!!!! In Gods time and God is always good! One thing CF has given me that I feel may not be as strong if it wasn’t for CF is my Faith in him!!! Man do I have faith in having a bad day I can’t get out of bed I can’t take my meds I’m crying I shut my eyes and pray and pray and pray and even if it doesn’t happen right away I know he’s working on it so I’m okay 🙂
What do all you guys do to find comfort! I’m hoping this blog maybe helps someone who may be terminally/chronically ill like me and needs an escape and it helps them I really do
We are here to help each other by in life God gives us the tools and I truly believe the people in your life are part of your tools! Keep moving forward and again forgive and love each other let people know you love them….. the clock is ticking and not only for me but for all of us! Don’t let your life just slip you by. When you wake up anxious or upset use the people around you to talk to to help you to pray to hold you to love you!!! I can even be one of your “tools” just let me know and I’m there!!! Love y’all sooo much!
I know this post is a bit random but when I woke and started to feel a little better I wanted to share and I wanted to help others(that’s why we are here) hoping someone who maybe needs someone tonight gets on here and reads this and says I’m okay if she’s okay I’m okay….
love ya all xoxoxox
Keep pushing on and always remember be mindful everyone has their hardships everyone has their story!!! ❣️❣️❣️
Hey y’all- yes we are a couple days in but the holidays and the ups and downs of the last two months or so have been very very hectic to say the least…
To start on a positive note my Moose has graduated the Academy with flying colors and has done a phenomenal job and I am soooo very proud of him! He strong and stands Tall but as we all know sometimes we fall or doubt ourselves and that’s where I cane in and helps as much as I could! Another amazing thing done together with it all said and done I will say this he never gave up(I’d expect no less from him) and he stayed focused he’s my hero(literally in soooo many ways and I never ever doubted him not even once!!! So let’s all put our glasses up to officer Thomas Konyn!!! I love you more than you’ll ever know hunnie and I’ll always have your back 1000% keep up the good work cause you continue to blow people away!!!
On to other things it’s the new year so why not try new things right?! I’m not going to lie to anyone and say I have not been struggling because I have and it’s been a pretty big drop in my health and the way I feel. I don’t move out of bed more days than I feel I even want to mention due to pain for the most part m, nausea for a good part and just overall sickness. I’m stiff and ache and have lots of different things going on. I’m still trying to work on my two main goals to hopefully someday qualify for transplant those consist of one gaining a significant amount of weight and two getting sugars under better control. I will say it’s a work in progress but I do feel my sugars are lowering and getting better but weight no such luck just yet. I’d say the biggest downfall right now is this nausea u mean more than even the pain it makes me want to not eat fall right back to sleep and not get up like ever again it’s soooo bad. Not eating makes it bad most times dry heaving will occur and eating def causes it to get worse most the times causing me to throw up all my food and then some which I seriously don’t even know where half the throw up is coming from cause I can hardly eat….(sorry if you are grossed out and don’t like when I talk about that stuff but I am very open and these are some of the things I mention on my blog so if uncomfortable I would suggest not reading them- no offense of course)….. anyway it’s just been terrible. Thomas’s new hrs are pretty cool for work because he’s home three like this weekend off two off three on two just kinda cool how it works and it works out to like idk 12 14 15 Days a month working – something like that!!!
Which brings me to my third thing doctor appts! This makes me super super super super suuupppper super happy because this means I can schedule my Appts around his days off so we can both go and suffer the dreadful appts jk jk lol but really they are not fun but have to be done :p anyway which brings me to my latest most scariest thing going on with me at this point in time the doctors have decided they can’t do much more for me cause I do not qualify DO NOT QUALIFY I WILL REPEAT BECUASE I WILL HAVE AT LEAST ONE PERSON COME TO ME AND SAY WHY NOT TRYING TRANSPLANT YOU DON’T WANT TO OR YOU DO NOT QUALIFY I WOULD LOVE NEW LUNGS I DO NOT QUALIFY…. I’m not yelling just letting everyone know in caps so it isn’t missed so they said I’m heading towards death which leads me to my hospice/palliative care doc appt my husband and I attended last week not a fun appt but again needs to be done! So therefore at least we got to do it together because no one should ever have to stand alone for news like that.
Paperwork paperwork paperwork and waiting to see when my mom can come to NC somewhere beginning of feb after my nephews bday or so around there because they want to see us ASAP to do and finalize paperwork and answer any questions cause of course Thomas is my number one but Mom is on there too of course and they can work together or if Thomas is far too upset Mom can help let the doctors and other professionals know what to do and what I would have wanted done when I leave this earth…..
Again this is a hard thing to even talk about but I wanted to update everyone I have updated very vaguely online on fb because I just don’t know how to put it or what to say so blogging is easier for me then I’ll just share this and everyone can read and contact me if any questions or wanting to Just talk! Don’t forget to kiss and hug the ones you love and tell them you love them because no one knows when it’s time to go be forgiving and love people just love!!!
There have been some serious serious fallouts and this past year that just aren’t right and should be talked about and settled and taken care of but that’s up to those people sometimes you just have to let go and hope they see what’s important and leave the rest behind before it’s too late to say I love you to say I’m sorry to say let’s move forward to hear that persons voice to hug that person just one last time!!!! I hope my blog gets around share please do because if I can just help one person even if just ONE see how important it is to let things go and love one another than I did what I wanted to!
I’m here on this earth to inspire I do know that much!!! I’m also here on this earth to be a good sister to my siblings and to love them unconditionally!!! I’m here to love all my loved ones of course!!! And I’m here to be an AMAZING Wife to my more than AMAZING husband!!! Oh yeah can’t forget being the best mommy to Raz and My my Furrbabies and Auntie to my Niece and Nephew that I just adore!
I’ve done soooo much in my life that at this point I’m not as scared as I use to be I’m more scared for the people and ones I love that I leave behind that’s what I’m scared for! I know there is a God I know I’m going to Heaven and I know why I was sent to live as long as I have and that was to get them closer and closer to curing cf! I also think it was to show the doctors that we are people too and I’m not a DAMN PUSHOVER AND IF I CAN’T CHANGE THE WAY PEOPLE ARE BEING TREATED NOW IN THE HEALTHCARE SYSTEM BUT I CAN CHANGE IT FOR THE YOUNGER CREW IN THR YEARS TO COME AGAIN I’VE DONE MY JOB!
And I do believe this blog is a bit of a lot to take in and a lot to hear but needed to be said and I need to keep spreading awareness and love. So my two health goals I will continue to fight towards and my other couple would be for my husband and loved ones to be set for Thomas especially because he is my rock to be set and we’ve done part of all of that in just about nine months! And it’s amazing found out Home to live that we both love in NC! Found and accomplished(he accomplished of course I just was his number one cheerleader as I always will be) :):);) becoming a police officer and now he’s working and has a steady reliable car and out next two steps are buy a house and then love and live as long as we can together our little fairytale and if by anyway God heals me or there is a miracle which CAN HAPPEN!!! We may have a little family of our own someday but till that day we’ll live and love hard and always be here for each other and always always fight on!!!
I’m gonna get more involved this year back into the cf advocates stuff because I kinda stepped aside but I had to but wanna step back in but not too much!!!
Living life HAPPY IS OUT NUMBER ONE GOAL! Feel free to write me on my blog on fb Instagram text if you have my number it reach out to me on here or fb and I’ll make you a friend love y’all hope to get some feedback!!! Thanks y’all
All my love today tomorrow and forever and a day after that,
Ashley aka lilsham aka superwoman!!!
P.s. so sorry it’s been soooo long again but plain on trying to keep everyone posted and I forgot to mention starting some new Greens stuff and gonna be using my oils a bit more and looking into some natural stuff for my sicknesses and dryness from meds having those kinds issues with the cf and meds and itching and all that thanks to a dear friend I love 🙂 but yeah that’s the latest I promise lol and I hope to be keeping up on here again with as sick as I’ve been literally even typing this is exhausting but I wanted to update people please share
And if you want to donate to me or directly to cf please let me know and share this because even each person donated one dollar it could pay off my medical bills and also help many many many many other Cfers I know who need the help just ask me how thanks y’all
Thanks for coming back! I know I’ve been MIA for over a month now maybe even two I have def lost count!
Life had been a lot I think the last time I blogged I did my trip to NY and Home again…. well for Christmas and New Years thomas and I decided to stay here because it is just way way too much for us to travel alone and at this time I’m far too sick to travel alone! Good news is Thomas graduates the academy on the 18th he is officially a cop now because they already took their test so now I get to pin him on stage! Yayy! But that’s only if I get to feeling a tad bit better before his graduation…. feel awful saying that and I truly truly don’t want to miss it for anything but I’ve been pretty sick!
Just a few days ago they started me on two hardcore iv antibiotics. It sucks Merapenem and Vanco! As most cfer know Vanco is one of the worst but best ones to be on…. let me explain the worst because you will get every side effect in the book and redman syndrome from it(even when it’s ran slow and given with 50 Benadryl) yup it’s that bad and merapenem when given with it kicks a** most times but also makes me terribly sick and hey give them one after another and it’s hard to get them to spread them out so I’m not getting as sick it just all really sucks and of course the first thing to go is the urge to eat and your appetite. Not gonna say I’ve had a huge appetite to begin with lately but this makes it darn near impossible to eat and yes those of you wondering I am still throwing up a lot. Doctors don’t want to keep me on nausea med constantly so I have to go see gastro doc that will once again tell me how bad my gastroperesis is and how there is nothing they can do about it and it’s progressive Just as CF is! Ugh and just a fun fact gastroperesis is usually caused by the cf diabetes, man this illness effects it all
I also wanted to mention my nerve damage because this has taken its toll on me big time lately. I’ve always had some numbness and tingling for a while now due to the diabetes as well but it has gotten worse and worse the last few months causing me to literally scream in pain and nothing really touches the pain. I let the doctors know and I’m asking them to try to find something that will just help nerve damage a nerve pill and I’m still waiting to hear back it’s so unbearable not to care anyone these two things don’t always happen to cf and cfrd patients but it does happen to some I know of couple other than myself but most the people are much older than me I’m only 40 in January so I def got the sh** end of the stick huh!?! Lol always oh well! As I always say don’t count the negative count your blessings it’s much more rewarding that way looking at the things you do have and worked hard for then looking at the things you do not have and may never have…. that’s the way I live my life at least 😊
So really I’ve just been focusing on trying to get as healthy as I possibly can and again it never cease to surprise me how cold hearted and mean some doctors can be with all I’ve got going on and all the things I’m trying to improve because we could always improve ourselves no one is ever perfect!
So forgot to mention for thanksgiving we went to our friends Steph and Seth’s house it was a very nice dinner with some laughs as we always do then went to my Aunts and visited for a bit too it was nice. I felt a bit bad cause my Nana did her own thing with her bf this year and I was here in NC with hubs which I know made her upset so I’m just hoping she was okay she said she missed us a lot but was okay so I’d like to think that was the way it went down 🙂
Anyway coming up on Christmas we have all our decorations and tree and everything else up and the tree decorated we did it about a week to a week and a half ago it was fun and looks sooo pretty in our new place with all new everything in it love it here anyway these ivs are kicking my butt and I honestly feel awful but wanted to catch up a little next blog I promise I’ll be sharing some life experiences and there is never a dull moment here as anyone who knows me knows!!! Lol so stay safe over the holidays we’ll talk soon.
P.s. comment like or share my post that way I know people want to still see my blogs thanks y’all l o v e y o u a l l !!!
Connecting with God and how it ties in with the cf life and people around us!!!
Sorry this one is a long one I’ve just been reflecting on how I’ve been feeling about life and my health…..
God is always needed but I need him even more at this time in my life 🙂
Don’t forget to always remember and it still stands true…. I’ll start with this saying….
The way people treat you is a DIRECT REFECTION OF THEMSELVES AS A PERSON AND HOW THEY FEEL ABOUT THEMSELVES!!! IT’S NOT ON YOU WHEN SOMEONE IS MEAN TO YOU!!! brush it off!!!! Just take a step back and be the bigger person 🙂
The best way to handle it is with your own happiness and success at life! 🙂
My life in NC is amazing. I have an amazing husband. Amazing furrbabies and home life. The home we live in is beautiful and the town we live also! My husband is successful and smart and taking great care of me. And I’m working on kicking CF’s a** every day 🙂 doctors may tell me I’m dying and others may think it but everyone is dying right?! life is too short to focus on the negative and the upsettness of illness. That’s just the Devil trying to find his way in and I have no room here for anything but love!!! ❤️❤️❤️🙏🙏🙏
Always put your energy into the ones who love you and love them back as much as you can! I’ve put soooo soooo much energy into trying to fight for people to love me that it’s crazy when I think about it. You should never ever have to fight for love. If someone loves you it will show! I always want everyone to love me and everyone to care about me everyone does don’t they?! But the fact is some people just aren’t capable of that love, they lack the ability! This isn’t just talking like husband and wife love I’m talking mother daughter father daughter sister brother friend and friend love. Some people just can’t and I’m starting to learn that. It’s not easy to accept at all but it needs to be accepted!
None of us are promised tomorrow though and it’s kinda funny with CF I think we live a little different and that’s why we love so hard and get hurt so frequently. We know how short life can be. We’ve seen it flash before our eyes more than once! Others live their lives day by day like they’ll be here forever and people like this will miss out on me in their lives and miss out on life and all the love I have to offer and that’s on them. So I am grateful for my CF for how it’s made me…. well me and helped me to live my life so well and to the fullest.
I’m feeling relieved and grateful about some stuff this morning that I thought would just crush me but has made me feel a bit stronger. Some similar stuff happened about a week and a half ago too…. it’s just been on going but sometimes that happens everything all at once then it pans out so I’ll be okay 🙂 another quote I love and live by is “if God brings you to it, he’ll bring you through it” and I absolutely believe this to be true! It’s finally starting to make sense to me. I thought about these things and just thought man I can’t do without her or I can’t do without him or how will I live but what I noticed was those people were just weighing me down not lifting me up!!! And they actually have been in my life I guess but out of my life for a long time now. Kinda like mourning but they are still alive it’s hard like mourning the loss of something not there! Just kinda hanging me by a string and that’s wrong no one deserves that….. and the sad part is you look back and see when they needed you or wanted something you were right there for them and helped them and when you no longer did anything for them you weren’t anything to them anymore…. it’s funny how that works. Even just talking emotionally like a text or a phone call just didn’t have the time for you. So in the end I noticed a huge weight has been lifted! It’s just not healthy and I’m choosing to stay positive and keep moving forward moving past it all.
I wouldn’t say I don’t care about these people because that would just be a lie but these people aren’t who they use to be…. they are different people…. the great part about it all though is this….. memories you’ll always have those memories…. someone can keep trying really really hard to bring you down and take things from you but memories that’s one thing they’ll never have….”you don’t know what you got till it’s gone” ain’t that the truth and I never changed or stopped loving any of these people and always showed I cared and reached out, I did my part so I can move forward with no guilt, can’t say the same about them.
At first I doubted things but now I know that the decisions I have made are the right ones and I also know that God will put these people back in my life if that’s what it’s suppose to be…. so I leave this in his hands.
And please if you are reading this blog don’t come on here or my fb or Instagram harassing me asking if it’s you that I am talking about honestly it’s general and most likely if the shoe fits and you think it’s about you, you are prob guilty in some way or another of doing the things I’ve mentioned…. I just love when I post something and people start writing me all upset is that about me is that about me!? I will forgive but I do not forget! And I will no longer sit around and be used as I have been not only for material things but emotionally is the biggest one. Taking someone with a big heart and just bashing them over and over and over again.
The last sermon I went to at church our priest(who is totally awesome by the way) talked about the mission we are all on while living on this earth.We all have a mission and we haven’t yet achieved it because once we do God calls us back to him. But throughout this mission LOVE is the key component and understanding of others is a big part! This can be all sorts of love too not just husband wife love. It could be mother daughter or father daughter or friend and friend it’s not limited to one kind of love. It made me think about a couple relationships and the love I was giving and wasn’t receiving back which brings me back to CF! When you have CF for whatever reason we just Love Harder I truly believe that! That’s where my husband says “you’re too nice!” And he’s absolutely right.
I’ve been praying and talking to God about how I feel about how my life has changed over the past few years with being so sick and how people see me and their reactions to it….some people I’ve noticed just can’t handle it at all and it’s sad but I believe this is a big part of some failed relationships I have had.
I may have to wear oxygen part of the time and when I sleep to help me breathe but the way I look at it is at least I can pull it off like no other 🙂 lol no just kidding at least I have it to help me for that I’m lucky!!! If I need it I need it and the people who love me it won’t matter to and others we’ll see ya! Think the saying is “the people who matter don’t care and the people who care don’t matter” another one of my most favorite quotes one to live by!!!! They don’t want to accept it and they are embarrassed when we are out and I’m carrying the oxygen or slowing them down or may need a wheelchair or they just don’t understand and don’t care and that’s really sad and it’s unfortunate but again it is what it is I’m learning to accept it. I may have to take it a bit slower and take breaks here and there and when it’s a whole day out kinda thing and sometimes I try not to bring all my stuff along cause it’s a hassle or I think people don’t want to be around me with all my stuff I have to carry along with me I pay the consequences. This isn’t easy for me to face either!!! I’m lucky to still be breathing I’m lucky to have all the people I have in my life and I’m grateful for those who are still in my life and with me every step of the way and those who have left my life too because it has taught me something and it makes those bonds with the others who are close to me even stronger 🙂
I prayed and prayed last night because I’ve been thinking about a lot of stuff as you can see again sorry this is so long but part of my CF life and my CF struggle is the mental aspect of it too… when people think CF they only think of the physical havoc it causes to the body but not the emotional.
God puts people in your life for a purpose either you needed them at that point in your life and now it’s just fate that they leave your life at this time. The people who leave your life I try to believe God has a plan. I don’t feel good about cutting people off. I don’t think anyone really does but again they gave me the scissors and sometimes you just have to cut them loose.
This blog was long and had a lot in it but I think it’s important to show how CF can affect your every day life and every day relationships with others and I think it’s important to get this all out there so maybe people will sit back and try not to judge or maybe someone will just love a little harder today…. or maybe getting my point across people will start to appreciate their lives and the people in their lives more!
Well that’s it for today just a little insight on life talk to y’all soon! And I have some funny stories to tell too about some stuff but this blog is already too long so saving that for next time
Love to y’all!!!
And again I’d love feedback so don’t be shy to write me a little something and let me know your reading my blog so I continue to write! I want to inspire you! Xox
Always and forever and a day after ❤️❤️❤️
So sorry it’s took me this long to write. Life has just been soo busy! In a good way I suppose cause I’ve only been in the hospital once in the last couple of months. It’s been a few years since I went that long. But some of it is because I don’t want to go to the hospital anymore, I’m just sooo sick of it! But I ended up having to go in a couple weeks ago and just got out this past week 🙂 happy to be home!
I’m kinda just “rolling with the punches” as I call it 🙂 haven’t knocked me out yet 😉 I’m still fighting hard! I’m trying to raise some money lately because we have some medical bills that just keep adding up… it never ends. Doing the best we can and that’s what matters most 🙂
Mom and Aunt Loraine came to visit a few weeks ago! It was fun we got to show them our new home and the clubhouse and the pool and gym! A lot of fun! We sat near the pool a few times! Yup in Oct!!! Kinda crazy but awesome lol! Loving NC! We also showed them one of our favorite places to eat Moe’s! They really really enjoyed it.
Thomas and my 6years together and 3years married just passed while mom and Aunt Loraine was here so we went out to longhorn with a gift card from mommy for our anniversary! We also received several beautiful cards from a lot of people! I thank you all for always remembering and thinking of Thomas and me. I was actually surprised with how many people sent cards and wrote happy anniversary to me! I had a couple people mention how out wedding was the best and they’ve never been to a better wedding 🙂 that makes us feel really really good because it’s a lot preparing for the perfect day. But it’s nothing short of perfect that’s for sure!
Anyway Halloween was fun too! We went as boxers to the Halloween party 🙂 can’t go wrong with that costume because it has a robe to keep warm :p all my other outfits were sorta big I’ve just been super skinny again. They are size small and still big oh well doing the best I can to Gain weight and that’s all I can do! The only one that really fit me was my ladybug costume! It ended up being super super cute! We hung out with some friends did dinner and waited to hand out candy! No kids came we were totally surprised! Lol kids are different now then when I was young. You’d get dressed up and go out and get candy idk now they stay in a lot oh well…. my friend did my ladybug makeup. She did an awesome job, pictures are on my fb if you’d like to check them out 🙂
I’m getting pretty excited for my visit back to NY! It’s not just like a visit to just visit…. it’s my niece’s christening and I can’t wait!!! So excited . She’s gonna love her gifts from me sooo excited to give them to her and become her Godmother happy girl 🙂
Today is an okay day. It’s an oxygen and extra breathing machines kinda day. Just doing extra treatments cause I don’t feel the greatest! The doctors let me leave because they knew I had Madeline’s christening but they said if I’m still very sick and still throwing everything up I’ll be back in! So not looking forward to it and praying I will feel okay and start to hold food down again….
well anyway wanted to catch y’all up and I plan on trying to blog at least a couple times a week if not every day ,
Love y’all always and forever and a day after :!:):?
Don’t be shy to ask questions or reply I don’t mind constructive criticism and or positive feed back
Bye for now all
Hey everybody, yes it’s been a while I’m sooo sorry. After my trip to NY and getting back home I wasn’t feeling well for a few weeks then I was getting back to life and back to my routine and it’s been crazy.
Since then my tube had came out of my tummy and I had to rush to ER and they had to do it again and put ngj tube in again but since I was only about a week from switching it to the button and it was coming out of my stomach and giving me issues they just switched it to the button while they switched it out. I was annoyed cause they made a big deal out of it and to me it made more sense…. instead of drugging me twice and doing it the next week they had to give me drugs now and with my breathing it’s not ideal sooo I’d rather them do it all at once. Well to make matters worse of course insurance said it wasn’t needed so they refuse to pay it’s craziness still dealing with all that craziness too….
I have not been feeling a 100% and at one point when I went in for my stomach they wanted me to stay for my lungs if I felt I needed it but since I felt so so I asked to go home and if I felt worse I promised to go back I’ve been doing okay since which is awesome cause I get to be home with hubs and my furrbabies. :):):)
Today is a pretty good day. Been up and about and I’m getting all my doctors appts done. I saw pain doctor last week and saw the doctor to flush and heparinize my port and check for blood return cause while in the hospital they couldn’t get blood return and the nurse deaccessed me without heparin so I had to have him reaccess me and then heparin and still no return. This is a big deal for me cause my port is my lifeline and because of my SVC syndrome I can not have this port pulled I could one blood out and die or two I could end up permanently swollen on my head and shoulders like when I was first diagnosed with SVC syndrome.
That’s a long story…. it was scary one morning I woke up and my head and shoulders were sooo swollen I could hardly breathe it was sooo scary I thought I was having an allergic reaction. Come to find out my port from having soooo many mid and picclines and ports…. it had closed over the venacava vein(main vein in my neck above the heart that all the lines are put into) had closed over the catheter causing no blood flow to be able to travel from my head back to my heart and body causing svc syndrome. It was one of the scariest things and doctors told me I may never go back to normal again and have this 15 to 20 pounds on my upper body permantly. That scared the crap out of me. They told me if my body made caladetal veins to help the blood flow back to the heart out of my upper extremities that I would go back to normal. I was in the hospital with this flare up for prob a week or so then one morning I woke up and I was back to normal. Thank God! With Gods time I got better I do still have flare ups and get swollen here and there but my body did make caladerals so even though it takes a little bit when I’m swollen it does eventually send the blood back to the heart and get better…. this is scary though because they can not do anything with the port because it’s wrapped around it now and can cause serious issues so long story short that’s just one main reason this port is important and I wasn’t too happy with the negligence of my nurse but I did the right thing and got it deaccessed flushed heparined and now it’s giving blood return.
So just an update I have endo(diabetes) doc fri and have cf doc on the 16th getting everything all done 🙂 feeling accomplished. Also booked my flight back home again my sister is having the baptism of my niece and I’m her God Mommy so I’m flying back to be there for that. Shorter trip this time around like 5 or so days I think 🙂 anyway that’s all that’s really been going on here just enjoying every second out of the hospital because they are few and far between…..
it’s been a long while since I wrote so I’m a little rusty I’d say and I’m still feeling a bit ran down and exhausted so not so much exciting happening here I’m just very focused on trying to gain some weight and getting these sugars better so eventually I can be listed for transplant. With having cf every day is a fight and to hear the doctors say I may not have a second chance when I’ve fought this long I’m just not willing to take no for an answer. I will continue to fight and I will get transplant I just know it keeping the fight in me
I’m gonna try to blog more often now again now that things settled a little
Until next time y’all
Ashley 🙂 missed ya guys!!!
P.s. Again any feedback on my blog is appreciated and will take constructive criticism too 🙂 thanks 🙂
Home tomorrow and I can’t wait!!! My husband my furrbabies ahhh the relaxing sun and pool people all around me who love me the loving people at my church…. just hope I’m not extremely sick once I get back home traveling is just too much all together won’t get all into detail because I just won’t!
Can’t wait to be home and hopefully get back to my routine not missing one chest PT or one breathing treatment it’s very home when away from home trying to keep on track and please everyone else all at the same time! It’s just not possible.
I’m gonna take a nice long bath once I’m home can not wait that should help and I haven’t swelled in forever well today I’m all swollen just fantastic oh well!
Hope everyone else had a wonderful holiday weekend my hunnie had three days off and he sent me pics relaxing by the pool haha that tease! Can’t be mad cause all I did was take pics near the pool and send them to him every day pretty much while he’s in the academy lol! Too funny I just kinda wanted to touch base. I’m a bit nervous about the flight and going home because of the hurricane but I’m sure I’ll be fine if not it was meant to be was suppose to meet some people today and I’m soo sorry I didn’t it’s really been an awful day and I’m sick but anyway I’ll blog soon and it will be more interesting I promise just right now my head isn’t where it should be and I’m really missing Thomas and my furrbabies I enjoyed visiting everyone here too and love y’all dearly but NC is def my new home and I love it there
Tootaloo!!! Tty soon
All my love
Lilsham!!! Xoxoxo ❤️❤️❤️
Do you all know what I mean. Like when you sit and just think if only this if only that…. well truth to it all is you are you(which is why yourself so special) and they are who they are…. things will never change it is what it is soooo I just ask the lord to giver me the strength to pull through it all….
No I’m not mad a little sad about certain things but as my husband has told me time and time and time again not to let my guard down not to let things hurt my feelings! He says “everyone is not like me you Ash…. have a big heart love big and would give the shirt off your back but problem is people won’t always do the same for you….
This vacation I’ve tried to put old feelings aside and do whatever but I’ve decided ones who want to love will come to me or make plans and those who don’t see ya!!!
I’m still sat and booked pretty Solid but I’ll try to fit more people but may need to come to me Okay I guess the moral of this blog was that after getting upset over some stuff and really working myself is it become harder and harder to beathe someone’s you have to stop and think is it worth it I’ve decided not so….therefore extra treatments and some breathing meds and therapies and pills then hopefully I’ll be okay for my “we miss Ashley” get together tonight can’t wait hoping I’ll feel okay anyway hoping I can make it
Time for me to go sleep Im in pain and on my oxygen and need rest talk you y’all soon
Hey guys so sooo sorry I haven’t wrote! Honestly I was exhausted and packing and everything and traveling just isn’t easy anymore for me. Heck going anywhere I have bags and bags and bags. One with breathing meds and oral meds and any extra stuff I am need plus snacks and all that incase sugars drop which happens a lot and I hate it oh and insulin and my meter and breathing machine and oxygen machine that is 1/5 my damn weight! Ugh sooo upsetting!
But as you all know I smile I spread love to the best of my ability!!! I’m having a great time visiting with my Nan and Mom and got to see a lot of my family yesterday for my Grandfathers bday so I am happy very! I get to spend all sorts of time with my niece and my nephew and just adore them soooo much! I just have been running every single day so unfortunately today I’m very very very sick haven’t really eaten a thing or moved from the couch other than to the floor about twenty minutes ago hopping laying flat will help my pain and help me breathe… I like to believe it’s helping and stay positive.
My Nan ran out to the store just a little bit ago to get some stuff for the tub because she knows if I can take a bath with some epson salt maybe I’ll feel a bit better…. thank you for that Nan you’re one of my angels on earth! Not always do we get along or see eye to eye but once we sit and we talk we always seem to get it and that’s what’s sooo special. I’m very very lucky to have my grandparents still and I won’t take it for granted!!!
My mom has also been trying very hard to make things easier for me in the beginning it’s hard I think it’s hard for everyone since I am so sick and when I have bad days it’s a damn bad day and I think people don’t know that even the smallest thing when feeling as sick as I am can just throw me off! And I’m sorry for that!!! This isn’t easy not one bit and trying to keep up on all my meds and treatments and eating when I feel totally totally nausea it’s just scary and a bad cycle I should be gaining and I’ve lost two pounds since coming noones fault but just something that happens.
I also feel awful haven’t had much time to support my husband emotionally with this academy and talk to him and for that again I’m so sooo sorry my love you mean the world to me and I want you to know how damn proud I am of you!!! You always kick ass and man it’s amazing!!!
Anyway this next week until I leave sat I’m gonna have most people come to me cause running around I just can’t do at this point but we can lay around and eat and chat and watch movies so contact me! I will be going to a miss Ashley BBQ that has been planned and lunch with a couple close friend Grace Danielle and the kids cause those plans were made and thurs I have a big dinner with all my family that I will be attending but other than that I’m sorry everyone you will have to come to me! Don’t get me wrong running around and buying gifts for all the new babies I had the honor of meeting and loving and being Auntie to was absolutely amazing wouldn’t change it for anything and meeting my new niece just amazing but now I have to slow down hope y’all understand I’m sure you will.
One thing I don’t miss about NY is this weather I’m freezing all the time in terrible pain because cold makes me feel awful and haven’t been able to take my bath but Nan is trying her hardest to fix her tub so I can take one and I think it may help but I miss my furrbabies and my hubs and my pool and the nice weather so can’t wait to be home either!!!
Love to y’all
Love always and forever,
It’s time for my NY trip in the am and I couldn’t be more ready physically everything is packed up and ready to go minus my cold stuff! Have my doctors note ready to go and all pills set allergies listed and all! Yes it’s a biggggf project to get ready for any “away from home” trip because there is sooo much I have to bring along with me it’s crazy! Mentally I’m not sure I’m ready….
Don’t get me wrong I love my family and friends and can’t wait to see them all! That’s for sure but leaving my one and only, my rock Razkal(jk jk y’all Thomas) never is easy for us! I mean think about it every single day you take care of someone help them with treatments and basically keep them Alive and kicking along with all my hard work to stay healthy up until going too!!! And now he’ll have 13days just to hang! I mean when I’m in the hospital for 14days every month to two months he deals with me being away but he still comes to the hospital helps me with chest pt at night when pt isn’t there and brings me dinner and sometimes lunch or breakfast depending on his days he works and hrs and also gets to see me on weekends…. all of this is amazing he works and helps me and then takes care of the house and furrbabies yeah he’s pretty amazing I guess :):):)
He already told me “Babe what am I going to do without you while you’re gone and 13days!!! I’m gonna miss you” lol but then he tells his friends “13 days no responsibilities ahhhh!!!!” Lmao cracks me up 😂 😂 😂 I’m actually listening to the guys right now from the bathroom cause I was taking a nice warm bath for my aches and pains and fevers and I can hear his friend Vinny “Omgosh I love your pug, and he is sooo round…. pugs are funny” lmao Razkal will be good entertainment I’m sure and now I can hear my husband sticking up for Razkal like I do saying…. and I quote “you should see some of the pugs on some of the pug sites my wife goes on Omgosh they are huge and round Razkal really isn’t that big” lmao!!! Rubbing off on him a bit but he still calls little man pig! Lmao! 🐷
Anyway I did get a book in the mail today that hits close to the heart! It’s one of my good friends books she’s amazing and has done a lot for cf can not wait to continue to read it already started before my tub and now I’ll be reading some during my night treatments then I’m sure before bed she’s inspirational! If it wasn’t for all the funding and research and speeches all over the world that she has done maybe I wouldn’t be here today! Margarete Cassalina is her name and her second book is called “see you at sunset” her first book was wonderful too if you look her up you can find both!
I am now getting my masks together because with cf and how low my immunity is and how I get sick very very quickly a mask is in order! Yes everyone will look at me like I have the damn plague!!! Lmao I use to mind now I smile when they move away from me cause most times I get the whole row to myself and I won’t get their nasty germs! No people I can’t get you sick but you can most def get me sick so I’m gonna protect these little lungs as long as humanly possible no risks! Some cfers don’t take all procautions but to each their own…. I wear a mask while around other cfers within a couple feet of each other, always in the hospital and on plans! I also wear wherever I think people may be a little sick or something…. anyway that’s just the way I was brought up! To do all my stuff (which didn’t always happen because I was healthy when young and couldn’t understand) but I now follow most meds to a t!!! Only things I change around because I have gastroperesis and other issues is the enzymes and when I take my insulin these things are very specific to a specific person because we all digest differently….but my advice to anyone who may be sick and sick of hearing do your meds stay on top of your treatments you have to do this before that…. be thankful because I unfortunately it catches up with you as you get older and for parents if your children with cf aren’t wanting to do their stuff or rebelling my advice is back off a little let them find themselves because they will keep fighting against you and it will just effect their health in the long run!
I’m a bit nervous about going to NY of course because it’s been six months since everyone has seen me and I have gotten sicken in some ways! What will they think? What will they say? How will they act? I’ve already had some very important people in my life pull away from me and it hurts but I’m gonna focus on the ones who do love me and do care about me! I’ll be totally excited to hug my mom once I get off the flight in NY and she’s waiting there for me!!! I haven’t smelt her(I know sounds weird but my mom always smells pretty) hugged her or been able to really tell her I love her and have missed her same for my Nan but I won’t prob see her till Monday sometime…. I’m super excited and couldn’t have missed them more but I do love my life in NC it has been wonderful! I’ve adjusted well Thomas and the furrbabies too I’m super lucky to have them and all the friends we’ve met along the way! I thought I’d have trouble making friends at 30years old but it actually comes naturally thank goodness 🙂 anyway it’s meds, treatments and chest pt time and we have to be to the airport by 830ish and check in and all that flight is at 1030ish and gets to NY 12ish soooo see some my New Yorks soon!!! Much love y’all!!!
Gonna Miss the Moose a little I guess :):):) ❤️❤️❤️✈️✈️✈️😳😳😳