This week has been thoroughly awesome !!

This week has been thoroughly awesome!! I had a frustrating moment with trying to get a different lighter pump for my feeds. (Because now that I go to physical therapy I am out of the house more and the weight of my feeding backpack kills my back) but yesterday I found out I will be getting the light weight pump today! Whoop! I also have had a strange amount of energy this week which is amazing. My only downfall... I can't sleep no matter what! I also have but the bullet and have been considering to attempt going back to school online. Lots of exciting things this week/update. I have been a busy bee. And I seriously couldn't be happier! I feel the savoir's love for me not because things are going my way, but I can just feel it in me guiding me, on what to do. Which path to take, to choose! Low times come and so do high times... Enjoy every moment of the highs while you have them and don't waste one second thinking about the lows because they will surely come again! So seriously just bask in a good moment for this is your life!-Chelle 

I had a fall

I fell backwards with physical therapy progress. This is frustrating but I know it's part of it. Just wish my body would behave itself. I keep comfort in my heart knowing God made me this way. There is a plan for me. I may be falling but I a living. Another punch in the gut is when you hear about people and their lives and your heart sinks through the floor as they talk about what they are doing. How they are doing. And I do want to hear ALWAYS I am happy for them. But I have my bad days where I feel so unfinished. But in the eternal prospect I need not worry for I am on my path, my plan.-Chelle

Simple acts of kindness go far. A sweet dear fellow support group friend Susan, sent me these books to read. It helps the bad days go along better. Moments like these i feel the savior a love for me through others. I will be passing along the tradition. I am blessed

I believe Changing is Continuous

This evening, I had the opportunity to sit in the grass for a few minutes and take selfies. Haha. But partly I was able to ponder about life. it was nice to just enjoy a second of fresh air. God's bounty is so much we get to have so many gifts in this life, if we just open our hearts and our eyes, and look. Goodness is hidden in the crevasses of our life's just like negativity we just need to do the sorting of these ups and downs. Trials can overtake us but it is us who have to be willing to stand back up, brush ourselves off and stand stronger than ever before. 

Being sick is a big pain in the butt!!

If anyone ever questions my organization skills. I mean I had to pop this out and organize every pill at 11:00 last night when I realized it was Monday not Sunday night.

Just jump into my life for five seconds between countless medications, putting feeds together,  taking care of my own port and Ivs, physical therapy, doctor appointments, sceduling, and the big stuff in between that isn't my job technically but every sickie knows it is our job or it will never get done. You get an x Ray you have to be the one to make the calls to find out if things are ok, need a wheelchair or anything else for you care better be prepared to fight insurance over something so little and vague that it matters you get your chair or. Not. I literally have been fighting for months for my wheel chair and my neurologist assured me this is normal. They will tell you no based on wording. Literally  is the matter of using fatigue the doctor writes tired or vice versa. Oh you don't get your chair. In my case I had loads of notes on autonomic dysfunction and on or two sentences in these pages of notes stating that I had chronic migraines because at my appointment we take care of several issues that specific appointment was migraines and my dysautonomia causing me to not be able to handle long outing my legs and body can't support that. So instead of sitting home by myself we decided it was time to get me a chair for my independence and quality of life. It just is so stressful and heart wrenching when you can't get what you need over something  so little and vague. My hopes are frustrated today but it can still be a good day.  love, hang in there, never give up-Chelle

Joey+Rory's new album

Today I randomly came across Joey + Rory's album hymns that are important to us... And I am in love with it!! My heart is full since listening and I can't quit listening. I seriously can't set it down. I felt the spirit guiding me to buy this album and I am more then pleased with my full heart as a reminder how important our relationship to the lord is in life. Rain or shine. They are strong with their love for God and that shines through this album. I hope the best for their future. I know Joey is ill and obviously not doing so well and my heart breaks for that sweet family. Keeping those prayers coming! -a Full Hearted Chelle  

Sleeping Beauty and FTA

Luckily I was able to eat in my sleep haha 

Today has been one for the bed. I have had such a good couple of weeks....But today I basically slept all last night. Woke up for a bit. Then ate a little by mouth. I Ended up making myself sick. Took a hefty dose of nausea Meds and back out until tonight! Holy cow can I sleep sometimes. I am unsure if the side effects of many medications, not having the best diet, or just being sick in general  that does this to me. This week is feeding tube awareness week!!check out the link below to support and learn more about tubies like me! http://www.feedingtubeawareness.org

These are my infamous puke bowls. I don't puke  in a toilet anymore. Unless  I absolutely have to. Why??? A.Germs, B. Bowls are more clean... Germs, C. I don't  enjoy putting my face by a toilet seat! However my bowls  accidentally got put away in the cupboard. yuck! I mean they get rinsed and cleaned in my bathroom and apparently these got extra cleaned and put in the cupboard by accident. Now my solution is to get my sharpies out and mark them so this won't happen again. It's moments like this I wish I could draw... I will turn to some quotes, "let it go, let it go, can't hold it back anymore." "The pukester 3000" "reserved for the pukies" last but not least "place here" haha. -Chelle

Feeding tube awareness week

In honor of feeding tube awareness week... I have learned to love my tube for my tube sustains me life. I am not always so appreciative and I tell it I hate it a lot when it malfunctions at all or I am just starving but truthfully even when my brain says I am hungry my body has been fed! Thank you tube! I literally just finished puking due to making a poor eating by mouth decision so at least I don't have to constantly throw up these days!

Voice

I first want to brag about my good day! Physical therapy is helping me. (Knock on wood) and I really don't think a cure or remission will come of it but if I get better days, we are on the right path!

Well, if you are chronically ill you are used to the fighting. And I mean the fighting for your care. Not just the physical stuff. Sometimes we really have to fight to receive the proper care for our needs. The other day on the phone the other party  tried so hard to talk me out of we will call, leaving a message about an issue I was having. This was all because  I was only one person and they simply would not care.... You know what my response was?? "I am going to any way this is a problem that needs a solution and I might be just one person but my health matters to me." Now I realize that I will more then likely be in fact ignored. They may simply not care. But I have a voice and a problem that needed a solution and I am not going to sit back and wine about things without making my voice be heard to the people that are there to do the hearing. I might just be one person but when other one persons come around it may catch an eye or an ear somewhere. I do believe in getting further with honey. I also would like to make the point that you can raise an issue while being kind, Respectful , and polite. Just because there is an issue doesn't mean you have to be mean or wound up. But my main point of this is your voice is meant to be heard never let someone else make you feel or talk you into thinking your voice has no value because it always does. Especially when defending your needs medically because boy do we all know, in the medical chronically complicated world. Times will come up  when we do the educating and advocating for our patient care. We have to stick up for our selfs and our health! (which both are very important) your voice matters no matter how small or seemingly alone! Hugs and hearts, Chelle