Thursday, November 27, 2014

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!

Tuesday, November 18, 2014

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

Monday, November 17, 2014

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??)

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!
 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!!

Friday, November 14, 2014

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

Thursday, November 13, 2014

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

Wednesday, November 12, 2014

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

Monday, November 10, 2014

Sick is a Full Time Thing, Ya know?


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! 

Friday, November 7, 2014


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.

Thursday, November 6, 2014

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.

Wednesday, November 5, 2014


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

Tuesday, November 4, 2014

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 ;)


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

Monday, November 3, 2014


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!)

Sunday, November 2, 2014

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) 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 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 took me longer then I thought to write this! Lots of Love-Chelle