Saturday, January 31, 2015
The past few days have been filled of tummy aches. But oddly I am starting to feel like a person again. Though my body is not my old body it is my new body... It's time I start embracing this life and start doing the best I can with this thing. Time to learn to live. To Love. To worry less. That is what my father in Heaven would want me to do with this challenge. Embrace it. That is what I will fight to do. However I do have a lot to learn. It's time to put one foot in front of the other and trust in God. Going to attempt upping me feed rate tonight to 20mls! Half way! Now if these flush and feed bags would just make me less nauseated and crampy I would be even happier than I already am! It is good to feel alive! Just take a second please, for me, take a deep breath and feel alive. xoxo-Chelle
Friday, January 30, 2015
Thursday, January 29, 2015
Wednesday, January 28, 2015
The past few days I have spent feeling sorry for myself, being angry, bitter, depressed... life is not fair that's a fact! I try to stay positive but sometimes having all these medical issues just pull you down. Honestly I do not think you even have a choice in it sometimes. You have to greive the pain that everything has changed, life will never be the same again, that you are sick for the rest of your life (unlcess a cure is found), that it is rough to go through this. It is part of being chronically ill. We hit breaking point and that is that. That does not mean we aren't positive, happy, faithful, knowledgeable... we just have to well vent. And I now know when those dreary days come and I mean I dread them! That in a few days I will have worked out all my emotions and be back up on the horse again for another ride. That is just how it works sometimes. Life is mean unfortunetly and we have to rely on our savior during those times (even when we are angry and may not want to) if we do it definetly makes our life's sweeter and those bittersweet moments occur more with Christ in out hearts with the plan of eternity in mind. We will be whole again someday <3-Chelle
Monday, January 26, 2015
Saturday, January 24, 2015
Since sharing my illness with others, I have received a lot of admiration and compliments. They range from you are "strong", "how do you be so positive through such hardships", and a lot of sympathy. All which kind words are appreciated! The only answer I have is that I the only way I can do all this is through God and my savior Jesus Christ. Through the knowledge of the Gospel. I know this Church is true. I know my Savior died for me and because of this I get to live a wonderful forgiving life. Though times are not always so great and I do get tested to my wits ends some days. I know that if I keep going with God in my heart I will get through. I know my prayers are answered even if they seem to be sometimes in an untimely fashion. He is there. Always. This is the only thing that makes being sick "easier" I know that "trials bring the biggest blessings in life." in their own timings. We all have trials that is what life is about learning and improving ourselves in God's eyes. My strength is found in the words of the bible and the book of Mormon. Listening to promptings. Those are the things that truly keep my head above water. That make those seamlessly long days that feel like they will never end be okay. When I feel like I am missing out in life, it is the reminder I am here for a reason. Everything happens for a reason. With faith I can testify that God is real Jesus Christ is real. The Church of Latter Day Saints is real. Me being a Mormon is real. It is what gives my life purpose. It is my true strength. " I know it. I live it. I love it"- Ann M. Dibb
After spending a day in the E.R. for a clogged Nasojejunal tube... I ended up getting a new tube. It was awful and painful. (when they removed the old tube my nose swelled and they had a hard time getting the new one in) The trauma my body went through getting the new tube placed cause a lot of pain and threw me straight into a POTS flare and I was miserably Hospitalized yesterday evening. They never did get my pain under control with Morphine and even Dilauded... it was a true test. I am happy that I did get to come home today and am feeling much better. -Chelle
|New Nasojejunal tube, messy hospy hair, and one very sore nose.|
Thursday, January 22, 2015
Today marks the one year birthblogiversary of Chelle's Hope, One Day at a Time. I am so excited I have been at this for a year! A whole year of memories written out... My Hardest year yet! I was diagnosed with Postural Orthostatic Tachycardia Syndrome/Dysautonomia and Because of this Gastroparesis! PHEW! What a year! But one thing I said from the second I made this blog "trials bring the biggest blessings in life" And I am very blessed. I am definitely stronger than I was a year ago. Prouder of myself then I was a year ago! I am a better me! Thank you Heavenly Father for loving me continuously and letting me in on this crazy journey I call life <3 I love my readers too thank you! -Chelle full of Hope for another year!
Wednesday, January 21, 2015
I am just trying to enjoy life. It may not be the regular average life but it is my life. Sick or not. Sickness is not who I am. It doesn't range the value of me. I read a quote yesterday that said, "We did not come to this earth to find our worth. We came to this earth with worth." or something like that anyways. (POTS Brain fog) I find that very true. I also find that is not something we hear or talk about a lot. So I decided to blog it. You have a very high worth in this life... don't forget it! Hold your head high in any circumstance. Celebrate the little things. Today I made my bed and I am super proud of myself! Such things aren't easy for me anymore but I am going to just keep pushing... because I am worth it.
I am still on 10ml. an hour of feed through my nasojejunal tube until Friday. I will go up to 15 ml... -Chelle
Monday, January 19, 2015
I received my Nasojejunal tube last Thursdays and started my feeds Friday. I am receiving 10ml. and hour. Not very much. It measures up to about 8 FL oz. a day. I got out of the house today for the first time! I just wish someone warned me about the looks from others. I don't mind the children for they are just curious and that definitely is okay. I just really do not like the looks from the adults.... they look at me with pure sadness. It breaks my heart. I kind of really want to yell out "HEY I AM NOT DYING. I JUST CAN'T EAT." I guess I can appreciate the compassion though. The weirder looks came when I had some snacks in my hand at the store. There is a misconception I'd like to clear up right now... Now not all cases of feeding tube patients can eat by mouth. But I can eat some by mouth just very very little. I feel like I am in a hospital in my own home right now... But I am thankful for my tubes to keep me alive! One step at a time, one day at a time-Chelle
Friday, January 16, 2015
So yesterday I had my Nasojejunal tube placed. It went ok. It hurt my nose and made my trimailgia worse. I did have some gagging but it wasn't as bad as I expected. They did mention it was a hard placement but it was my 1st time so I don't know. They struggled getting it into the duodenum. Today I am just worn and still on TPN waiting for home health to show to start my feeds.
Thursday, January 15, 2015
Laying here wondering how today is going to go getting my NJ tube placed (nasojejunal). That is a tube that goes through your nose, down your throat, and past the stomach into the small intestine. Yes, I am very nervous. However, hopeful to use my stomach somewhat again. wish me luck! I will post more later-Chelle
Wednesday, January 14, 2015
When you are chronically ill good days are worth more than diamonds. Nothing in the world could price a good health day. When you are sick all the time. Life becomes dreadful doctor appointments, counting and popping pills, seeking help and not always finding it. You forget the old "normal things" like just getting in the car and going somewhere, not caring about the weather, not worrying if you are going to make it through the outing. Even walking outside is not the same. You loose that carefreeness in a flash. It turns into worry; am I strong enough to walk that far, can I handle all the people I am not used to being around, (the what if's are my favorites... and believe me when you are chronically ill you are no longer invincible. Therefore everything is possible. That can send you into what if overdrive.) There is a lot of misery involved. It is like trekking the Amazon with no gear. half the time we are lost and finding our way through the bushes, trees, and the rain and the other half we are on a path somebody else has taken in hopes of getting to our destination. That destination being some form of health/quality of life. Then the darkness comes and it is such a thick darkness you can't even see through it. Nor, past it. It forces you into total blindness of what's ahead. You think you've made it through to see light.... then trip on a rock face first into the ground. Even still, you pick yourself up, dust yourself off and keep moving forward. Everyday is a struggle but you enjoy the ride. Yes there are times of misery but there are times of wonderfulness too. Things you could not have learned from not trekking the Amazon. Sure She is a beast, but in the end you get to your destination, Happy, with new skills, & alive.
Monday, January 12, 2015
|The picture does not do justice.|
On our way home from all the doctors Saturday I got a beautiful White turquoise necklace! I seriously am in Love with it!! We found them on the side of the road at the bottom of the Salt River Canyon. They are there a lot of the time...(I travel wayyy to much to doctors hah) This is the 1st time we have stopped though. I am positive the best turquoise jewelry comes from those made by authentic Native Americans. -Chelle.
Saturday, January 10, 2015
I am home! Finally! My new Gastroenterology appointment went okay. I am getting a nasal Gtube possible Jtube. That will consist of putting a tube up my nose, down my throat, and into the stomach (for a g) and if it's a J tube same thing except it goes into the Jejunum. I am nervous about that! Then I had 3 biopsies taken (one on my wrist, thigh, & leg). That was for the neurologist to study my small fiber nerves in my skin. Then I had a MRI of my neck. Let me tell you it was one rough day on me. I truly did not think I was going to make it. I was sooo sick with POTS all day. Plus like maybe 2 hours of sleep the night before and barely sleeping all week thanks to my POTS. I did get some shut eye last night so thankful! but have had tummy troubles all day! if I eat more then 2 bites I am sooo sick. So the Total Parenteral Nutrition is going bye bye! It is very full of side effects so I am glad! I also think it will help my tummy to have something in it... hope it will start back up more.
Thursday, January 8, 2015
I am now a BIG fan of Oxiclean! I had the biggest fright last night with my Picc line...
I luckily was awake! I was sitting in bed at 2 A.M. frustrated I could not sleep. When all the sudden I was in a big pile of my own blood (and lipids)! I knew automatically it was from my Picc line and I assessed the situation. I have a tube called a Y-site that looks like a letter Y. This is so I can hook up to lipids and TPN at the same time. (so 2 separate bags, and 2 separate tubes connect to the Y-site and that connects to my Picc line.) Well, my lipids came off the Y-site and where pumping all over my bed. But that is not the worst part in the few minutes I had been sitting there my blood was pumping out of my Picc line and let me telling you it was flying out! That is the scary part, I worry if I would of been asleep would I have bled to death? Maybe my insomnia is a blessing!! I definitely want my J/G tubes now! (by now I mean yesterday) Back to the story... I was bleeding all over and lipids were pumping all over. I hurriedly grabbed a washcloth and covered up the y site which made me laugh because I really needed to clamp it off to discontinue the bleeding and I was panicking so I tried to stop it with a wash cloth. It took me seconds to go oh yeah clamp. I got my hands semi clean and luckily I have some wipes in my room too on my medical shelf. I went to town with those and started sopping up the blood with my washcloth and wipes and pulling off my bedding to toss in the wash. My new robe I just received for Christmas unfortunately also was drenched in blood! It is white with light purple zebra stripes. I was so sad looking at it all blood stained. but I got my bag and everything wipped up the best I could. Then I just tossed it all in the wash and I put a TON of Oxiclean in there with it and a tide pod. I am happy to announce my blood soaked sheets, pillows, and robe where all 100% stain free! Not a trace there! Yay! so I am an Oxiclean fan (and of course tide). I am so blessed I was awake last night! Stay safe from those picc lines! xoxo- Chelle
Wednesday, January 7, 2015
So, this week has been an awful Gastroparesis week! Every time I eat anything I vomit, have bowel issues, and pain! I am starving. I am not sleeping. I see a new GI, have a small fiber nerve biopsy, and a neck MRI! I hope I survive that day. lol However ready to move forward -Chelle
Tuesday, January 6, 2015
Monday, January 5, 2015
|reindeer in the garbage...broken.|
I had a sad moment Christmas day, when my only and favorite Christmas decoration broke! My reindeer Cookie Jar.... I barley hit it with it's lid & the glass shattered. Along with a piece of my heart. I have had that deer for many years you see... I got him at my LAST Hatch family Christmas party. (My Grandma's family) I had gone to those Christmas parties my whole life and as you get older those things tend to drift with your childhood. I have many good memories from those parties and the last time I attended I had no clue it would be my last. But it was and I have treasured that jar since. Rest in Peace reindeer jar <3
ON a brighter note...
The other night it snowed and I of course couldn't resist the urge to make an angel! Mr. Wrecker had fun in the snow too.
Friday, January 2, 2015
Last night we got around hmmm 6 inches or more of snow! it is pretty! A good way to start off the new year. All of Arizona was covered in snow from this storm even the valley of the Sun!! Stay warm out!!