Happy New Year's!

I hope everybody has a safe and healthy New Year's! Have fun!! I am staying in tonight with my parents and my precious pup!  It is snowing!! I had a doctors appointment today... I found out I have been gaining weight because they are making me gain weight so when I switch to my G/J tubes I won't loose "too much weight" because the transition can be a little rough. See a new gastroenterologist next week! My New Year's resolution is to focus on what I CAN do and not what I CAN'T do... And to follow the Lord's way and continue on, Thankful for my MANY blessing this year :) But...Here's to a better year!! xo -Chelle

Trust Your Gut...

I am a Rock star. This morning I awoke to radiology calling for info. for my neck MRI. Then a few minutes later my primary care physician's office called... I have been waiting for weeks for her to find me a gastroenterologist who will A. take my case and B. treat my gastroparesis and C. Do my tubes and take care of them.... Well her idea and my idea must have been two very different things because she is sending me to a general surgeon... in a rural area. Bottom line I need to be in the city where all my other doctors are with all the issues I have and the hospital here just does not understand me and my crazy situation. And I am a lot to take on medically. So I was just in shock because when I was in the hospital during Thanksgiving with my tummy. I had to go out of town because they are not equipped up here to do it in rural AZ. (that's what she said and sent me out of town) So I just got on my awesomeness and started calling around. Simply because my gut was screaming NO to me. (this is a skill sick people pick up very well... calling doctor's offices... and googling places for treatment.) I ended up calling the children's hospital's GI team. They were super nice when I simply just called to ask who they sent their adult patients to. Got a number and called it and found a doctor who will treat my gastroparesis and do everything! Now I just pray it all works out for me because I really need this! I am excited. I will be seeing him next Monday. If you have some prayer time please pray for this to work out for me that I can get good tummy care because it is seriously so hard to find. xoxo- Chelle

I Am Forgetful.

You are going to have to excuse me. I have been very forgetful.( I do suffer from brain fog or amnesia I call it) I keep forgetting to post on the days I feel well enough to. I hope you can understand and forgive me, xo -Chelle

More Dysautonomia Awareness

As you know I suffer from a form of Dysautonomia called POTS A.K.A. Postural Orthostatic Tachycardia Syndrome and believe me it effects much more than my heart! It effects everything my body does automatically (the autonomic nervous system, is disfunctioning)
here is some info on more awareness! (a news segment)
http://www.baynews9.com/content/news/baynews9/video.html?clip=http%3A%2F%2Fstatic.baynews9.com%2Fnewsvideo%2Fbn9%2Fweb_video%2Fdysautonomia.f4v

***VISIT https://thedysautonomiaproject.org/ TODAY!! RIGHT NOW! THANKS TO ALL WHO WORK SO HARD TO HELP DYSAUTONOMIA <3

Christmas

Sister, Me, Mom.

I hope everyone had a very Merry Christmas!!

I sure did! My Christmas was full of blessings!

First off I prayed my heart out that I could be well

at least for Christmas day. When I woke up it was

7:30 a.m. (nothing short of a miracle for me to

be up that early). I also was the first to wake up

So since I was up I put my makeup on and did

my hair. Totally shocked my parents. Then my

sister slept in haha which was fine and I felt

good ALL day long! A miracle, simply. 

The day was calm and peaceful. one of 

Those days you just cherish and enjoy. It even 

snowed!! (with a 10% chance) A very lovely day!

The day prior (Christmas Eve) on of my lines in

 my picc line clogged. And the cath-flow did

not unclog it. So Home health left it for Monday

to try again. I had been checking it nightly with

a syringe and bam! I had a blood return!

I received lots of lovely presents. But my biggest

 one was from My Heavenly Father and that was

my good health!

I Had A Cry

Yesterday everything that has been eating at me ate me whole. I had some grieving. A long process yesterday and for some reason the Holiday season was not helping that. (all the chronically ill out there know what I mean) The Holidays can be very challenging for a chronically ill person. First stress will literally make us sicker and everyone stresses over the holidays. Then through my personal experiences, I stress about not being able to rest for a minute, I stress about getting over stimulated. I stress about being fatigued and weak. I stress on not being able to cook a thing or really help out others in that scenario and as a woman (that's my role) I can't go shopping so I therefore miss out once again. There is a lot of sadness that comes with these harsh realities. The holidays really make me upset now and no matter how hard I try it is a battle with myself I can not win. I cry every year. So I got all my alligator tears out yesterday to God and I pleaded for his help and asked for a blessing because I did not have anyone around to give me one and surely someone in heaven could give me a blessing. The second after I felt great peace and it felt like an army of angels had their hands down my arms and neck and around my head. After this I was able to take a small nap and escape that awful mental but then the very physical pains that I was experiencing. pain so bad it worn me down to nothing. But after I rested I took my meds ate some baby food (pears) and I felt like a whole different person. My heart rate went down to normal and is staying down!! For a POTSy that is big news! This is the 1st POTS medication I have been put on and I have to say it is working. I am far from cured but wow I feel like my body has calmed down a bit. I kinda feel like it is my Christmas miracle gifted by God, as always. May you have a Merry Christmas eve, Christmas day, and everything in between.  - Chelle

Last Christmas

Just one day left of antibiotics boy am I happy about that!! And 3 days until Christmas! After listening to Christmas Devotional It was a good reminder of what Christmas is all about, practicing Christ like love. Tis the season of giving. I aim to do well at this but being sickly (especially as sick as i am now) it makes it a little more complicated to do things for others. That being said does not mean i can not do them! All I've been able to do since I was in the hospital last month is just lay around hurting or nauseas/vomiting. My nervous system is in a tizzy. But the other day I was determined to help my mom out. I am an adult, I see I stress her out with being so ill. I see her just so tired from taking me back and forth to the valley to countless doctor appointments and staying up late at night because I don't feel good and I need someone to talk to. My mom is a super hero mom. Literally. She always puts herself last. This year she was giving her fellow co workers these cute fleece throws. She got busy and decided not to put anything on them because prior we had came up with "fleece Navidad" So she went to work and I spent hours making them and I had to use this pretty glitter cover paper but it was hard to work with and nothing would stick. Our glue gun was out of glue, so I found some craft glue but it took a long time. It was a mess! Plus, I was trying to write neatly (I struggle with handwriting) but in the end they were cute and I helped my Mom. I wish I could do more for her so much more but I know my efforts where measured big by her. After I was finished I had to take a nap haha that's how much work it was for me but I'd do it again in a heart beat. Last year was a good Christmas so I thought I'd reminisce and do a flash back.

 My sister Chels and Brother in Law Billy

 

Dad & Mom

Me and Chels opening the same gift.. Nollie perfume

Looking at these, my hair has grown a ton! yay

 

Update.

I saw my new neurologist yesterday.  I wore this hat and yesterdays make up (i took this photo the day before the doctors) He was super nice and seemed to be a great doctor. I am getting to actually treat my POTS with medications in hopes to improve my symptoms! Syndromes are complicated so you can not just cure them. They really do not know anything about POTS except for it's symptoms. Which range to anything. I just took my first new medication and I am nervous it is to lower my high heart rate. We are hoping by calming the heart rate my whole body will be calmer. He didn't have a lot to say about the Gastroparesis besides it happens in us POTS patients. But he sat there and talked to me like a person. Not a number, not a cow, he didn't stare at the floor. He did not close his eyes. He did not ignore my questions. He didn't judge me or race to the finish line and think he knew what I was going to say. He let my finish talking. He let me ask questions and explained things to me. Part of me wonders why no one did this for me sooner and It makes me angry but I am just glad there is some form of symptoms help...let's just hope it works!
            My body may not be working and things are crazy literally but I am still me inside there and I think I am just starting to realize it. Hope for a better future <3- Chelle

I'm Trying

I know trials strengthen us and bring blessings to the very bottom of my heart. I know that. Tonight or this morning I should say I am up. I can't sleep anymore until after midnight. My brain and body simply just think nope it is time to be awake. It gets frustrating. I am on the sad end of things tonight... But I know it will get better in time. My body progressively has worsened for 8 and a half years now. I seem to be falling apart. That reality is sort of eating at me today. I just hope soon my condition improves, instead of worsens. sometimes being in constant pain and being sick always can creep up on you because it is simply super hard to go through. I remember for some reason (before I was sick) I used to think if a person was sick long enough it would become 'normal' and they would not know they where sick. Well I did not think that I wondered about it. FYI It doesn't become normal. In 8 years pain is still pain. Fatigue is still fatigue. Missing out is still missing out. And grieving is still grieving. I know I have big changes happening before my eyes but what I also know is the Lord and my Savior Jesus Christ are right there by my sides. With them I can do anything, even heal.
Leaving today to see a new neurologist Friday morning. Hoping to improve my neurological condition (POTS/Dysautonomia) & therefore better quality of life. Hard times come and we have to trust that they too shall pass. No matter how long they last. Here's  to another doctor hopefully it will be long lasting care :) (I know I am complicated, but I'm still a person) - Chelle

Rolie Polie & update

well today I received my IV pole. And of course me being me I had to decorate it up a little... So this is what happens it matches the tree haha. The pole does not have wheels but I am still going to call it rolly polie!

say my primary care practioner today. She is of now calling gi doctors to take my case and insert my Jejunostomy & gastronomy tubes. So I am feeling better about things because I am finally moving forward. And a lot nervous about having tubes in my tummy. My tummy has bacterial overgrowth because it is sluggish and slow. I failed at taking oral antibiotics so therefore the iv pole came and I have to do iv antibiotics through my picc line. So far tummy is much happier! Also she said my tummy is trying to "eat" itself because it's so empty always and so for that I get stomach coaters. I also have bad acid reflux that is making my throat sore so I am already taking omeprazole 2 times a day so she added zantac but it has to be broken into 1 4 times a day for 1 dose because tummy is not working.  I may have a uti but  the antibiotics will fix that! went to get my blood work and I am apparently a turnip because you can not get a drop of blood out of me! That's that!- Chelle
p.s. please sign this petition if you can it is for funding for gastroparesis and to recognize it as the disability it is!! Here is the link: https://petitions.whitehouse.gov/petition/recognize-gastroparesis-disability-and-create-funding-research-study/D7VmYVWT

Petition Gastroparesis Disability/Funding for research.

Gastroparesis means: Paralyzed Stomach ... In a person with a paralyzed stomach our motility of our GI tract is slowed.

As you know I am a newbie to having Gastroparesis. However it is very life altering in so many ways. I can't eat. When I do eat I get sick; Vomiting/constant nausea, screaming pain, bloating, Constipation, diarrhea, and everything in between. It also causes malnutrition, which is why we live off of tubes to be fed. And because of the slow gastric emptying we are prone to getting infections in our GI tracts or blockages. Gastroparesis for me and many others is like living with the stomach flu. It never ends. Think about this do you go to work when you have the runs or are vomiting all day? It makes it hard to do much of anything. (I know Gastroparesis is just one of the many ailments I have but it is a biggie) Did you know some amazing people have had their life's taken away. Yes, Gastroparesis is a killer! We need to catch that killer and save life's. I can not even find a doctor to treat Gastroparesis and even better I have some friends with it in the exact same boat. This is serious Guys!  We need funding for research! Gastroparesis needs funding for research too! So us the patients can have not just better care but better qualities of life. Thanks-Chelle
The link to sing HERE:https://petitions.whitehouse.gov/petition/recognize-gastroparesis-disability-and-create-funding-research-study/D7VmYVWT

If I only had today

If I only had today what would I do?..
What is my purpose here on Earth?
If I only had today to live I'd want 3 things; my family to know how much I love them, God's Blessings/approval, to make a difference. I really am just a regular Lady living an extraordinary life. Some days all I do is lay in bed and pray that tomorrow I will have a better day. Some days I wish for the day in bed to come back because my pain is too high. The burdens too high. Some days I cry for cures or better treatments. Some days I get mad that this awful thing has happened to me. Some days I feel robbed. That I am missing out on life. That nothing could ever make this okay. Some days I feel a burden to my family. Some days I am scared to death. Some days I don't think, I block it all out. Some days I smile and pretend I am just fine. Some days I am okay and just 'fine'. Some days I spend countless hours on the internet searching for treatments/cures, & specialists. Some days I drag myself out of bed and go to doctors. Some days I play pharmacist and feel like I count endless pills. Some days I talk on the phone all day playing my own receptionist. Some days I make my dog lay near so I don't feel alone. Some days I grieve the old me. Some days I dream of a different me, what I would be like if I did not get sick. Some days I cry. A lot. Some days I worry about finances and how I will ever take care of myself. Some days I quit. Some days I feel like I am literally on a roller coaster and I can't get off. Some days I spend in hospitals or emergency rooms. Getting no further help because I am "complicated" or "rare" or "unknown". Some days I am labeled. Some days I just put one foot in front of the other Because it is all I can do. But all those bad days give me moments I could never forget! Beautiful blessing and a clearer purpose of what this life entails and how I should be living it.  That I should live to the commandments of the Lord in righteousness. That I am different and it is okay! I have purpose here. I will do my best to make a difference on this earth. Even if it just is for one person. I will have done my job. I will never quit  fighting this battle. life here on Earth is just days in the Eternity of Heaven. I would rather fight for my Eternal blessings here for years on this Earth than A day in Heaven. God pushes me in this life so I can learn and be humbled. I may have a lot to overcome but God is there for me always. Pushing me forward like an never ending loving Father. I will be whole again one day. In the meantime, TODAY I will hold tight to these beautiful moments being sick gives to me I will be a light. I will be holy. I will spread Christlike love. <3 -Chelle
" A bad day on earth is just moments in Heaven"- me.

Merry Christmas Pretties

I thought I'd share one of  my sister Chelsey's daunting talents of many. She made this Grinch!! and decorated so her house so cute!! Sister's right to brag :)
P.S. Going out of town to see specialists. Seeing an Allergist I have gone to for most of my life Dr. Duane Wong. Gonna try to get this Mast Cell Activation Disorder figured out. AND of course physical therapy how could I forget. :) I think the anitbiotics are working because I have quit running a fever and I am feeling better some!! Have a happy weekend - Chelle

Show Low, AZ. Woolford's Garage.

So my Grandma was shopping and found these super awesome mugs where we live...Show Low.  On these mugs has a picture of Woolford's Garage.  Let me tell you why this garage has so much importance to me.

A little History...

Woolford's Garage is my Family's garage. It has been family owned and operated since 1947. (67 almost 68 years).My Great Grandparents opened the garage back in 1947. It's been going strong since.  My Grandparents both have put in many years here and a lot of hard work! They really kept this place going for a long time and they did a such a  great job! (and still do) I am super proud of them. They are a fine example! A few years ago Woolford's Garage survived a fire and of course made the front page of paper but even a fire couldn't stop it.

http://www.wmicentral.com/news/show_low/woolford-s-garage-hit-hard-in-tuesday-fire/article_ef90fac0-7add-5466-b0b5-f851e7e6a5f2.html?mode=image&photo=1

(this photo found at WMI central link above, they have all photo credit)

As you can see in this picture back through the gate (where the trees are) there is a hill of grass, from the church. That is where we all stood that awful evening. I will never forget it. And Family friends and family members would come stop by that hill of grass and talk to us. Comfort my grandparents. But in the end it was all okay! well a little crispy but some TLC fixed it right up.

 

So many hearts and hard working hands built this business I am proud to call them my family <3

Fog.

We have had so much fog here in AZ it is nuts! It has been days of constant fog and just barely a sprinkle here and there. Here it is currently 35 degrees but it feels like 29... Humidity is at 100%The storm is suppose to move in Friday and Saturday... I will be out of town to the valley where it is warm for more doctor appointments.  Started a Low grade fever last night hoping it goes away! here is to day one on antibiotics. Fingers Crossed!!

I Would Never Trade Anything for All the Knowledge I Have Learned.

"I would never trade....

The grace that I feel and the faith that I find

Through the bittersweet tears and the sleepless nights

I used to pray he'd take it all away

but until it became

a beautiful

heartbreak."

-Hilary Weeks

(every step album)

 

Only Grandma can make me feel better

Today my Grandma stopped by to drop off my gift she got for me when I was in the hospy (hospital) the cutest pair of Leopard print slippers ever! with a bow! if there are 2 things I love it is leopard print & bows! I have a pair of leopard print slippers from 2 Christmases ago gifted by my sister Chelsey but these are much cuter and have a bow! If you want to find them they are by dollhouse. I have no clue where she got them.  Then Grandma took me to Walgreens Whoo hoo! lol but she was a big help! I really needed to go there and get my mediations. I have a bacteria overgrowth we think... stupid Gastroparesis you are so mean! Now I am on antibiotic and those kill me! oh boy! it may be a long week!! I got home just in time to be sick boo! I am not complaining though I had a great day :) Love spending time with Grandma! Thanks Grandma xo-Chelle

Better Than Others

Some days are better then others! Enjoy the good! Live in the joy of the moment. Most importantly Love! don't compare your life to others because every life is different. We are all on different levels of our own special journeys!

"Lift up your heart, & be glad; and Look."-Moses 7:44

"Find Me"

If I ever were to meet Hilary Weeks I am more than positive I'd tell her thanks! Her beautiful music always manages to capture how I am feeling. Sometimes those lyrics pop into my head at just the right time and I know God is talking to me, to my heart. Tonight as I took Wrecker (my dog) potty I was looking at the moon. I love the moon and the stars! To me they are a symbol by God of light even in darkness. Light can always shine through your heart even on the darkest days! As I looked up at that big sky  I heard (in my head) "Come find me in my hidden places, find me even where the shadows lye light a match bring a torch illuminate this great divine come find me" ( I hope I didn't butcher those lyrics POTS can mess with my memory a great deal) but I have been wanting God to find me. I was feeling frustrated for weeks not feeling him as I normally did. I knew he didn't desert me or leave me but I truly don't know if it was one of those teachers not allowed to talk during the test kinda things or if it was something with me but I feel him strongly now and my testimony is thickened. I know God was talking to me through music once again. "come find me" He wanted me to find him. To know he was there. As he always is. As the lyrics in "Find Me" go.... I believe that everything happens for a reason." I am a huge believer of that. God loves you. - Chelle

Learn to Love Tubes. Learn to Live...If I survive the Holidays!

             Since I am finding out my Gastroparesis is unlikely to go away. As well as living in tons of pain every time I eat.... And all the vomiting and nausea. I am feeling super bummed out. The holidays have been making this even heavier as they progress. I am the cook and they baker. I have always had such a love for it. Though, I do not cook or bake often due to my prolonged list of ailments courtesy of Dysautonomia and a few other things. I normally can scrounge up some energy for the Holidays to make a few things. And of course when you get stripped of a lot of the "normalcies" of life when you become chronically ill (having extra money, being able to go places, like shopping...) things go out the window before you get a chance. The next thing you know you are dealing with the reality of 'where did that go'. I did however successfully help make Thanksgiving dinner. That was when I got out of the hospital, of course. I know everyone has trials and hard times in life. I believe no one gets out spot free. As my hunger progresses daily... My patience shortens. I dislike it. A lot! I want food in general and especially the yummy holiday goodies. I just want to sit down in a restaurant. (something I not long ago took for granted) I can eat but barely and I typically get very ill when I do. Due to this I feel like I must be at home to eat. And TPN (total parenteral nutrition) The way I am eating now... I have a picc line a.k.a. a central line and am fed through that line. yummy! It totally bypasses the whole stomach. It goes through the kidneys (and the blood & all  that good stuff, I am not a scientist to explain that part haha) Bottom line. I am starving! Don't panic though I am getting all my nutrients and any life sustaining needs via my picc line. It looks like I will be receiving a Jejunostomy/gastronomy tube in the nearer future to sustain me.(TPN is temporary, and it rough on my little body)  That's where they put a tube in your stomach (well in this case 2 tubes one in the stomach. One in the Jejunum.) I have been a bit afraid of dying. Reading scary stories on the internet don't help. But today God let me have peace and know I am not dying right now. So I will fight. I will fight and I will learn to love my tubes! As well as that HEAVY BACKPACK!! Without them I'd be in bad shape if even alive to write this right now. When I realize that it makes me realize I have a purpose here and work to do! I have excitement in that and pride! I am so thankful for my faith, that I can have the wonderful mercies of God and my Savior Jesus Christ. I am blessed! Times are tough and seem confusing. I have physical disabilities but I have God and Jesus Christ... And all my angels here on earth (my family & wonderful friend that has gastroparesis and POTS)  and in heaven and if that is not enough. I simply do not know what ever could be! Hmm puts the Christmas Season a little more in perspective! I never wrote my Thanksgiving Thanks really... I am Thankful for life, My family & loved ones, God, & my savior Jesus Christ! And of course my tube!! The basic necessities in my life are my number ones! xo- Chelle

Oh Christmas Tree, Oh Christmas Tree

Yesterday, we did what should have been done the day after Thanksgiving. We put up our Christmas tree. My most favorite! (but somebody named Michelle was in the hospital) However it was a lot of work and I was sick with my stomach. I powered through anyway and I also learned how weak my hands are. helping put  a Christmas tree up is a lot for a POTsie! up and down and holding our arms above our heads do not help our low blood volume and blood not going to head circumstances. I had a little chat with Santa. He said I was so wonderfully behaved like an angel bahaha(wink wink)

And Viola a Christmas Tree! 

Is This a Crossroads?

As I previously posted, I successfully ate a meal (mashed potatoes and turkey) with out vomiting. I was super happy after being in the hospital the week prior to all this. Then last night I had only potatoes and just a little bit and I lost them all! Ugh Gastroparesis is so confusing. One minute I am high the next low. I have no clue if I am getting better. IF that was a sign or just a trick. Guess wait and see some more.... I just gotta keep going! -Confused Chelle

Good News Food

Last night I was super shocked... I ate some turkey and mashed potatoes and a while later 2 chocolate chip pancakes!!! is this real?? I did not throw up either!!! wow I am still happy... today all I could eat so far is applesauce and belly is aching. But take my victories when I can, and that my friends was a rather large one! prayers for continued being able to eat food!!!

Donate to Dysautonomia on #givingtuesday

I ask that if you can today that you please donate to Dysautonomia International. Even a dollar would help! Since Dysautonomia is so little known, we don't get a lot of donations, ect. As a person with Dysautonomia (POTS) I would love to have answers, or a treatment option and be able to get out of bed and to be able to eat again. PLEASE donate it is #givingtuesday plus there is a donor who is going to match ALL donations! That's a really big deal :) Goal is $20,00.00 to match a grant. Let's do this!!

link for donation/more info: http://www.dysautonomiainternational.org/page.php?ID=193


                                                                                                          Thank You, Chelle

Hospitals Stays Make Me Think.

My recent hospital stay was hard on me, Lots of not feeling good and pain. I am still very weak from it. It gave me lots of time to think. I also am growing scared of Gastroparesis. Dysautonomia is a monster! It is claiming me in lots of ways and getting too close to my safety, for my likings. Tubes are not nutrition and I'd gladly throw them out but this situation isn't necessarily a choice now is it... The fear and worry (that usually sideswipes me with negativity) have pushed me further to rely on Jesus Christ and God. I always rely on them... But going through all these hard trials. Even though I drag my feet the whole way. I know I always come out learning something. Something more important than my sufferings. I view things differently. I think for every suffering here on earth, we get made up ten times more in heaven. I wish I could take the bad away. Heal my body. The fact is, I can't. I can strive to better myself through Heavenly Father's eyes in any situation. No matter how tough those situations may be. I have endless love constantly. I have hope of some sort of being better & though some days that hope is just a tiny glimmer in my heart, it never fades. One day I will be whole again sufferings of being sick don't last eternities just life times. I find peace in the resurrection.(not that I want to die in any way, I hope I don't misinterpret this) I have a testimony that Jesus Christ is real and I have a plan! It makes the hardship softer and my heart bigger. I feel my Savior's endless love for me. Today I had "I Stand All Amazed" playing in my head. But really that's how I have been feeling... think of all the sufferings Jesus went through for me, for you. He was Crucified. He bled and died for us. He went through every suffering there is. Could you imagine that. I was thinking about that today and just my sufferings have me overwhelmed lately could you imagine every suffering you can think of at one time? He must really love us. <3 - Chelle

Thanksgiving Suprise

My Sweet Family surprised me on Thanksgiving evening. My Mom stayed with me the whole hospital stay. So my Dad, Sister Chelsey, & Brother-in-law Billy sneaked down and did a surprise visit. My heart smiled it was good to be with my family even though the circumstances where... less then great. My and Chelsey took pictures and goofed off like all sisters. And she said she ate the best hamburger ever at the cafeteria (on thanksgiving) lol. Families are forever <3 I most certainly love mine!!

 

I am happy to announce I am home again. Doing somewhat better pain wise and more then glad to be out of that hospital room named 832. TPN (nutrition) was arranged to 18 hrs a day so hooked up to my tubies longer. Unfortunelty no further care or action has taken place after a week in the hospital... That's part of having this stuff wrong with you...Doctors do not typically want to take you on because you are complicated or they do not know. Have to respect their feelings, but hope I can find A gastroparesis doctor to help me sometime soon in the near future!!

Thanksgiving- In the Hospital

Happy Thanksgiving everyone!! Gobble, Gobble! hope you have a wonderful day and time with your loved ones! I am in the hospital. Away from my family have been here since Monday. I must say I am very thankful for my mom who takes such good care of me but I  learned something last night. My family does Thanksgiving Eve and I have never missed it and you don not realize how much you miss your loved ones until you can't be with them. So give the hugs and kissed and spread the love to your most treasured loved ones in your life this thanksgiving! <3- Chelle

This is what they gave me this morning jello and broth!

 

Then they made it up with this (I did not eat it, I can't) but it felt good to look at it anyways I did devour some mashed potatoes!

Tape Rash

Today I had the same ole, same ole kinda day. but I have a horrible itchy rash under this tape!! You can not see it but grr it is there so itchy! And I can not take it off because it protects my Picc Line and keeps it sterile. Hoping for my new sensitive tape to come in tomorrow! let's just hope I can get my nurses to change it! See Primary care physician in the morning (the one over my TPN) hope for good things!! Because my tummy is not improving at all.  xoxo- Itchy Chelle

World Prematurity Day

Happy #worldprematurityday! I was a 3 month preemie so in honor of this day,
 (Born: January 29th Due date: April 26th)

this is me and my parents almost 22 years ago!

Dynamite comes in small packages.
(I got rid of tubes once before, think I can do it again??)

Update:
Finally the starvation ceased for the time being. Today has been rough. I basically am at the point to where I am starving or if I eat anything I am in pain or vomiting or both. It is so frustrating. I never know what exactly is the right decision when it comes to this. Thank goodness for my PICC line and TPN! However I just noticed my Picc line looks cracked a little...hope it is not an issue... she (home health nurse) could not get my extensions off so she really had to tug. hmmm I just realized how different my life is then "normal" 21 year olds. My extensions consist of longer tubing placed on my PICC Line so I can access it on my own... instead of long hair haha! Ugh my tummy is hurting :/ I can do this! God is with me and my angels <3

A Good Day Chelle & the Leary Truth.

This is what a good day Chelle looks like! Viola! I used to look like this all the time. I do not anymore. I look sickly more then not. That is okay!

Curls. 

 Lipstick, eyeliner, mascara!

A new sweater I have had for weeks and have waited to wear!

Yesterday was a good day over all. I wore makeup! for the first time in what felt like weeks. I felt pretty for the first time in weeks. My siblings came over and I was silly and laughing for the first time in... well let's not answer that. So I had a good day right!? Yes, then why i felt so low made no sense. I think that happens because on the good days we enjoy them yes. But after they expire, we are faced with reality that we are missing out. Not living to the full. Struggling. The burden digs in deep into the heart.

As you all have known, I have been strongly encouraged by the Lord to stay happy in this less then wonderful situation of the recent diagnosis of Gastroparesis, courtesy of my neurologic condition Dysautonomia (Postural Orthostatic Tachycardia Syndrome). The past few days I have struggled. I have struggled with the way I physically feel. I have been having massive pain with eating anything, even a sucker made me ill and hurt just yesterday. I am starving. (am on Total Parenteral Nutrition, so safe) I have suffered pelvic pain at a higher level. My head aches.I have been burdened with stress. I have been more anxious and on my toes. I have been more tired. I have felt more discouraged as reality sets in. I can't eat. No matter how bad I want it. I get sick. I know God wants me to be happy. Here and now. Going through this complicated headache. I know I am strong but just 5 minutes ago, I was unaware. Courtesy of Al Fox and Meg Johnson...and of course my Father in Heaven.... I have had my prayers answered again. I was feeling so down and just weak. I had let the pain and struggle get me. I was feeling incomplete, yet again. I felt like I could no longer climb this mountain. It was simply too big! Didn't God know what I was going through? Did he not realize POTS spelled backwards was STOP?? Didn't he know how weak I am? Oh, He knew alright. He knew my hearts aches because he is My one and only Heavenly Father who loves me very much. Because of this, he not only listened to my hearts woes, but gave me and Olive Leaf I have been praying for. (referring to the olive leaf from Noah) In Meg and Al's talks The lord not only lifted me and inspired me, he showed me.

The first talk was about Gilead and how his army had to shrink down to 300 men and it was this whole process but of course it was a trial for Gilead and he was unsure and feeling like hello, don't you know all my weaknesses here in the situation) but in the end they where victorious. (because of God) then Meg shared a personal story about having a really long day and being to tired to wheel herself up her wheelchair ramp to cook dinner. She prayed and told the Lord she'd practice her faith and push as hard as she could but she didn't think she'd make it. (usually she falls backwards) but this time the whole way up she went. Al spoke on the bad and the good days. Sometimes those bad days seem to never end and we can get down. But the good days are sure to come around again. But even still those trying times come and it's harder. Trials come. Some days have more faith then others. Some days it's almost impossible to pray out of anger or physical reasons. Others we pray all day. Others we are weepy...this is my life.(I am all over the place but I know my plate is a platter and I have strengths) but I needed to know God knew my situation. Right this second. So I prayed. and I came across these. They so were meant for me to hear. God was involved because he showed me through their talks, he is there and I can do this. What he gave me was reassurance to all the things I was already aware of. He doesn't want me to list my negatives and short comings. They don't matter. I must focus on the good, the positive. No matter how weak or disqualified I think I am. Take a deep breath. I can do this. He is there, to help me up. I just have to walk in faith and continue hoping! - Blessed Chelle

P.S. go check out Meg Johnson and Al Fox if you haven't already! They are both awesome and truly inspiring!!

How I Feel About My Tubes.

            

 

             The fact that I have a feeding tube doesn't feel real all the time. I have moments when I realize I have to rely on a feeding tube for now and it feels weird. Over all this tube helps me feel so much better. I am not starving constantly. I have a little more energy and a lot less pain. I still vomit.  I eat very little on my own. But that tube feeding is sustaining me. Just like Heavenly father is always sustaining me in life.
               I have chosen to not change my life because of this. I will not avoid food. I will not avoid food situations...the grocery store, restaurants, pinterest/Facebook (all the recipes and pictures), TV commercials. I have chosen to take this challenge and roll with it. Embrace it. Because that is what my Father in Heaven wants me to do. He wants me to be happy no matter what I face in life. Trails are tough but they bring greater blessings. Even sickly, he wants my happiness to continue, grow. He wants me to spread goodness and light. So that is what I am doing! I know he is giving me such a strength with all this. Because it is true all of this it is easiest sick transition for me over all. I am sick. I am going to be sick. It's okay. It's how my life was intended to be. One day I will be whole again. In the mean time I can choose happiness. I am never alone here. Just that little bit of knowledge really goes a long way :) Hopeful & Heartfelt -Chelle

Infinite Power of Hope...This is so Lovely, My Heart Beams Full of Gratitude for I Know This Is Truth!

Thinking about Love.

 

 

              Today I  want to write about love. Love is the most important thing in this life as well as in the afterlife. Love is bond that keeps us together forever. We all are focused on love in life. All types of  different loves exist. Each and everyone of us love. How much love are we spreading? Are we telling our kids we love them regularly? Our spouses? Our parents? Our grandparents? Our Grandchildren? Our friends? Our neighbors? Love spreads through out the earth in many different ways. Do we smile and hold a door for a stranger? Do we bite our lip with a loved one to avoid an argument? Do we bite even harder due to the risk of hurting another, out of temporary anger? Do we smile at the waitress who is having a hard time and reassure her, her flaws are okay? That she is a human being too? That they are not hurting us in any way? Do we be patient with one another? Do we jump to being angry with the person on the other end of the phone line? Because his/her's company wronged us (even though it was not that person's fault?) When we fall out of love or loose a friendship, do we let the hurt go or do we hold on tight to our anger/hurt? . Do we bully ourselves? Simply because we are not "perfect". Do we put so much pressure on ourselves and others that it tears us down as individuals? Is that Christ like love? I am always asking myself if I am spreading Christ like love In my life and I am not perfect, I definitely have room for improvements. But at the end of the day if I  keep Christ like love in my mind and remind myself to spread it. Will I spread it more? I did an experiment and the answer, yes.  It is neat to see other people light up and it's like a chain it just keeps going.... like if you hold a door for a stranger that stranger will probably hold a door for another after. Smiling to people, smiles are contagious. When spreading Christ like love we able ourselves to see more goodness and love in our days. Do we listen to our promptings? Do we act upon them? I will never forget one day a stranger practiced Christ like love to me in a very desperate time of need. I was trying not to scream because of this worst agonizing  pain ever, I was at the time experiencing in full force. I had been experiencing it for days. I had had surgery several days earlier. I had complications and ended up getting a latex catheter in surgery. I am allergic to latex and this caused swelling. So of course due to swelling. The new Catheter and I had to go home. When the swelling went down the clotting began and it hurt! After the drive and the bumpy wheel chair ride over pavers, and to the floor of the doctor's office. I was in agony. My mom was signing me in. That's when this dear lady walked up to me and put her arm on my shoulder. Very mother like and kind. She said to me something simple but very impactful to me, "I am sorry & it is going to be okay." I remember that awful day. That for months I tried to block out of my mind. That lady made me feel better in an impossible situation. We were in the pelvic pain specialist office. So, there is a good chance that sweet woman knew what I was going through. She felt prompted to comfort me in anyway she could possibly think of. She spread Christ like love.   If we spread Christ like love we aren't just spreading love but goodness. We are even spreading love to ourselves. I think that is what our Heavenly Father, who loves us endlessly wants. Is for us to spread love not just for others but for ourselves. Lots of Love - Chelle

Bright and Happy

This morning I was feeling a little down about things. I prayed about it. I got the answer that I wasn't exactly expecting.... I need to be happy and shine goodness through all the craziness. Tubes are not the end of the world. I can be an example and be bright and happy even with testing trials. I felt peace with this, as well as a new found inner strength. I need not be down or weary. I can do this. And that is exactly what I am going to do! I am not going to falter! I am going to Finish! Yours Truly- Chelle

Sick is a Full Time Thing, Ya know?

HAPPY VETERAN'S DAY!! THANK YOU TO ALL THE VETERANS OUT THERE WHO HAVE SERVED, OR ARE CURRENTLY SERVING TO YOU I OWE MY GRATITUDE!
                                                                                                             xo-Chelle

The other night I felt like a preschooler lugging around my backpack full of TPN. (nutrition through my picc line) I sent this to my Sister because I knew she'd laugh. (she is always saying I ran around with a ponytail on top of my head)Tonight I spent hours priming my bag because the pharmacy forgot to vacuum the air out of my bags! It is dangerous to put air into your veins... So hours me and my mom spent priming away. (priming is where you get the air out of your IV line)  It was so hard for me because I took an antibiotic and it made my tummy so angry I was just sick as could be. ( This particular antibiotic is suppose to be speeding up my tummy...well it just reeked havoc on me instead). I am hooked up now and so tired but I have to stay up to take medication that I am too nauseated to take... being sick is hard work! Hope you all have a lovely day I am hoping to break out of my house! -Sick Chelle

POTS is Mean!

Yesterday, I woke up to a horrible  surprise. I got out of bed and used the restroom. Then proceeded to walk back into my room to unhook from all my tubes. Then a huge wave of horrible nausea and pain hit. I was white as a ghost! Even my lips had no color to them. I couldn't breathe. I grabbed my flushes and ran into the restroom, so I could throw up if needed. My whole body burned my stomach cramped. Then I started passing out I passed out I think 5 times. When my Mom found me, I was on the bathroom floor with a saline flush connected to my line. In a horrible to see situation. lying there lifeless and incoherent. Slurring my speech and just feeling so much pain. My Mom played super hero and got me back in bed and literally had me drinking salt water. Then she added Gatorade and Pedialyte. it was awful and scary. I know I am not in "danger" during these episodes but I still worry every time that it is killing me and surely I will be dead soon. But then I pop out of them enough to have my brain back. It's hard to drink with gastroparesis and even more hard when my dysautonomia causes the Gastroparesis. So these attacks kick my Gastroparesis into play more. ugh the pain. I spent the whole day in bed non functional. It was a dreadful long day.
 My dog went and got my Mom to come check on me. It's not a coincidence! My dog and my Mom were  both prompted to help. I know I am so blessed in so many ways. That's what makes going through all this sick stuff okay. It is okay because I know there is a reason. God is with us always and so is our Savior Jesus Christ. Protectors. In the Doctrine and Covenants section. More specifically  D&C 84:88- "I will be on your right hand and on your left, and my spirit shall be in your hearts, and my angels round about you to bear you up." (I know I use this one a lot but it is true! oh so wonderful a truth. He is always there and we have angels. Our angels in heaven and our angels on earth. My momma is my Angel here on earth. I am lucky to have her! 

Windows.

 

when I was a little kid I would look out the window at my sister playing out in the yard with our cousin or friends. I remember how I longed to be with them. I also remember feeling like it was not fair but there was nothing I could do about it. I had to stay indoors if the weather was cold or windy because, my  Allergy induced Asthma was so bad. But eventually I did out grow this. Last night I was thinking and longing for normalcy in my life and how sickness takes that away. I miss shopping, going to restaurants, and just living life . I found myself in the same situation as, that little girl I once was. I was longing at the window to play outside. Except this time it was the window of life.

A Apple a Day....

 

An apple a day... well this isn't exactly an apple now is it. But this is how I get all my vitamins right now. YUM. Just kidding. I miss fruits and veggies. I have to add my vitamins to my TPN (total parenteral nutrition) bag nightly. Just thought i'd share another tid bit of what I am doing for my Gastroparesis caused by Dysautonomia.

Plans.

Today I saw my primary care physician. Who is super amazing and saving my body right now! She put me on TPN (total parenteral nutrition) through a PICC line. almost 2 weeks ago. It helps me a lot. I have Gastroparesis...which means my stomach is paralyzed. I was able to ask questions about my future today... and I was informed that the TPN is temporary and we hope my tummy starts working again! but I will be on TPN until my body is back to healthy, healed, and nourished. Then if I am puking at all or not able to eat like a regular person I will be receiving a J tube (Jejunostomy tube) basically a feeding tube will be placed into my small intestines. I threw up 3 times today ugh...I am not sad. I am happy to be receiving help instead of just rotting away and worsening. God loves me, he has a plan for me. Gastroparesis is  not fun but I can do all things with my loving Heavenly Father <3

The No Good Cadd Pump.

It is 11:15 P.M. and my sweet home heath nurse just left. My Cadd pump is awful and my 2nd one in two weeks...(they really could make them more user friendly) So my poor home health nurse had to come out and help me with it because the supplier was well not the nicest and just telling me it way okay when it simply isn't (looks like Cadd pump # 3 is coming up for week 3, not a good rate haha) It would not prime my tubing and none of the home health nurses knew how to prime this particular tubing without the pump (so it would be priming by gravity) Well my nurse figured it out tonight and we fixed the issue temporarily so I could hook up. I am so lucky to have such kind nurses who come to my needs when going through this craziness. They do tell me this is unusual to have all these weirdo pump issues I have had. luck me, I guess... Grateful for my helpers though who pull me through these learning/crazy times. (mom included) ... pumping away-Chelle

This is a Cadd pump. I use this Cadd pump for my TPN (total parenteral nutrition) through a picc line. This particular Cadd pump is a jerk ;)

Blood!

First I will explain this photo...So these little guys are the ends to my picc line (it is sooo long because I have extensions, so I can do flush and hookup all on my little own.)
One of these little guys on the end fell off last night at like hmmm maybe 8:30. I was watching TV on the couch and I look down... "BLOOD!!!! My first thought, oh my gosh I can not believe I pulled my picc line out and did not feel it." Thought number two, "Oh wait I didn't pull it out haha." Third, "Blood! it's coming out my extension." Then I clamped shakily and called home health. The nurse came out and fixed me up...(because I did not know what to do) and I kinda felt stupid when we just had to clean it up really good and flush, flush, flush... of course by the time the on call nurse got to my house it had been like maybe and hour. Well, in that time my blood in the line started to clot up (as it should) but not good for me because we had to super flush that out with medication. So my line can be used as it should for TPN (total parenteral nutrition) I was like emotionally drained by the end and totally worked up I did not sleep well. I know in the scheme of things it really was no big deal but when you are learning about this and going through it all... it can be frightening! and then Stressful! But all is good! I see my doctor tomorrow wish me luck!
P.S. getting ultrasound Friday for the clot from my picc line, let's hope it shrinks some more by then :) lots of love- Chelle

Alive.

 

Most people can walk miles a day and not think twice. Some people can run miles a day. Today I walked a few feet with my dog. And if you are wondering...Yes, I am proud. Walking under the sunshine with all the pretty leafs, the brisk cold air (a little to cold) I felt alive for the first time in weeks. Not bed bound. not overly weak. Just alive. Me. Walking. Down the street. Smiling. Grateful. Happy. Proud. Blessed. Accomplished. Alive! That's what I felt today as I strolled through the fall air. My body is far from perfect. It plots against me everyday. I have been so weak I haven't been able to walk my few proud feet for weeks. But I did today. and that's just that. today! I don't know if tomorrow I will be able to or next week, next year, ect. but today. I did. xoxo-Chelle

 

(Mr. wrecker was more then happy to be out of the house!)

 



The Clot./Tired.Who.Me?

I have literally been too fatigued to post! I just could not muster up what it took to even pull this up... But as I sit hooked up to my Cadd pump busy pumping in my nightly TPN (total parenteral Nutrition) I feel like it is a good time to! We will start with this tid bit. The other day I found out I have a blood clot from getting my Picc line placed (not even a week of having it) So they put me on aspirin and are monitoring it closely. I am praying it is magically gone Monday. If it worsens or moves into the larger veins out my Picc line will go. Into the other arm it will move to and I probably will develop a clot in that arm. yikes! But this is not why I haven't been posting... while yes the TPN helps me feel better. I am TIRED  all the time. past tired. Down right fatigued. I am unsure why this is but hoping it goes away and soon! Halloween was good but as we went to my Grandparent's for pizza (a family tradition) I had to leave early and I couldn't eat the pizza. Which was easier then usual because it didn't even look appetizing to me. The pizza was great and a good quality. My stomach just was mad from attempting to eat noodles the night before making me sick and in a little pain. So, just imagining what the pizza would have done was enough to make it unappetizing. My POTS had me down though. That's where my opponent of the day was. dizzy in every shape or form. slurry words. tremors. ugh POTS! Now I think the POTSY trigger yesterday is the Aspirin. Thins the blood. POTS causes low blood volume, low blood pressure, tachycardia (high heart rate)...you do the math. So early we left! I was bummed but tried focusing on the positive, I still went. I still saw my cute baby cousins and their adorable costumes. I still saw family. It took me all day literally to shower, and put make up on...do my hair. and about an hours time was all it took for me to crawl back into my cave (my house). all that work! whoops not focusing on the positive am I? The weather has dropped much cooler and in fact there is thunder rumbling right this second! kinda exciting! I am excited for Christmas! Now don't get me wrong I love Thanksgiving. It just kinda dampers it when you can not eat. just sayin. So my non "replacement" holiday for all the non-eaters out there... (the day after Thanksgiving) Christmas tree decorating day! now I have always done this...I was the stickler when it came to this day growing up haha and I still am! It's so fun and all the pretties, lights, just pure joy! Wishing all you a happy November 1st and if it is November 2nd...it took me longer then I thought to write this! Lots of Love-Chelle

No Way! You Don't Do that.?

I was so happy last Sunday when I got to go to church! I have been very ill. So ill going to an hour of sacrament meeting was just too much for me. I know an hour doesn't seem like a long time but mix it up with Dysautonomia/POTS and a slew of other things with no diagnosis and an hour can be very long. Stopping going places comes with the mean  territory of sickness.When I stopped going every week to church I prayed to be able to go. I prayed about how guilty I felt. I felt like wow I can' t go to church I must really be letting Heavenly Father down. And of course, there was a lot of confusion. Why when I was trying to be so obedient... Why could I not get  the health to attend?? Some time later I learned that it wasn't a punishment of any sort it did not reflect my righteousness, my trying. And one night I was praying and I apologized again and the Lord let me know that he understood. He always has understood and he let me know I no longer needed to carry that guilt around nor, be sorry. Not being able to attend church like I wanted has been a trial all in it's own. Some people can judge and think how awful I am but I still keep my values, I study scriptures often and walk in the ways the Lord wants me. Church is important in all religions but going to church is not what makes you a member. Living it, experiencing it, making your life it, those are the things that the lord wants us to do! (he wants us to go to church too) this is in NO way me saying not to go to church or any such thing. Church is a wonderful blessing and I hope to be able to go next week and every week after that!  Church is a wonderful thing to attend and we should! I sure miss it and when my grandma walked in and saw me she lit up. (we used to go together before I was so ill)  I don't think I will ever forget it. a wonderful spiritual reflecting on the importance of family special moment. Cherish the small things as much as the large for I bet those small things are much greater <3-Chelle

Tubes.

Yesterday night, I received my first bag of TPN (total parenteral nutrition) through my PICC line,due to my newest diagnosis of gastroparesis. (after vomiting for months straight) Friday I received half a hospital in a few boxes and a large bag haha. (home health) I have to say it is weird, foreign having a tube sticking out of me. But if this tube makes me feel better we can definitely learn to be friends! My family has worried faces, but I don't I know heavenly father is helping me. I know he is behind everything. I prayed for help and I received help. He may not move our mountains to climb but he can hold our hands on the way up.  I am hooked up to bag two... let's hope for more nutrition and happier body!-Chelle

PICC Line Placement & Giving It All To Him.

This is my new Penny the Picc Line.

When you put your problems in the lords hands and trust fully in him. Any burden can be made so much lighter. Now I am not saying that the Lord is going to just erase our burdens. (because I am a  firm believer that everything happens for a reason and that trials bring the biggest blessings in life.) My struggles recently have been pacing myself, being impatient, and trusting 100% in the My Savior Jesus Christ. Now that does not mean I didn't have faith, that  I didn't believe, that I didn't know. I simply was holding onto a piece of my burden no matter what. I tried to let it go but me just being me couldn't. I know the lord can take our burdens away and make the load not so heavy in the midst of horrible storms in life. What I also know... you have to let him. We have to give the burden to him. So. I started praying, first for what I needed in my life (that I would know what I needed to work on within myself. because I was not fully sure). Then I listened, that was a little hard for me. I did not want to be patient. I really did not want to pace myself. But those 2 things oddly are what I needed to help redirect my life to let the lord have my burdens to lighten my load. First I started with patience, taking a deep breath, being aware, correcting the problem so to speak. Then I started pacing myself (because I go from 0 to 60) and even in the littlest tasks I found myself needing to slow down. Who was I racing for? and I mean everything I did I caught myself going as fast as possible. It weakened me. And I am pretty sure being sick has made that worse... trying to get what I can done When I can. But it was fueling my crazy dysfunctional autonomic nervous system. I was throwing matches to the fire. (no this is not a cure to my dysfunction) but I know it helps. Getting worked up, stressed out is any sick person's enemy. I wasn't trying to get all worked up it was just what was happening like a bad habit. Oh wait! it is a bad habit! And I am not saying I don't still have that habit... but I am working on it and making improvements that are changing my life for the better. Being sick is hard. I freak out a lot. I get very scared of the unknown. But these new changes are helping me cope. My world is brighter, lighter, I find peace. I know it is because of Jesus Christ who is leading me, guiding me, varying me through this rough time. But to have peace today while getting my PICC line placed and learning home health is coming to my house and I am going to have TPN (total parenteral nutrition) through this PICC. Because my stomach is paralyzed due to my dysautonomia.....Yes, fear is there but I know my Heavenly father is there. He is guiding me pushing me, helping me. He has a plan for me eternal and beyond this sickly life... but the sick  part is teaching me more then I could probably ever know.

This is my other arm bruised and battered from countless Iv's from IV Therapy (prior to getting a picc and new treatments)