Thursday, July 30, 2015

love Life, Love yourself

I have had a lovely past week! I feel pretty well considering! I am simply enjoying my time of freeness and happiness! Thankful for my hard times but feeling so blessed to be able to enjoy the simple good times to the extent I get too! Being sick is a blessing in its own little ways! Live life, love life, even when it is imperfectly perfect and remember to love yourself xo-chelle 

Wednesday, July 22, 2015

Herbie

A little over a week ago I did something very exciting!!! I bought my first car (well I have had two vehicles thy were mine but I was in high school) this was my first all grown up car lol my herbie is so much fun!! Love my vw! -Chellle

Sunday, July 19, 2015

Gastroparesis & feeling Very Hungry

I have gastroparesis. Unfortunately all I have been able to find online when searching, starving and gastroparesis or hungry with gastroparesis...and many more similar searches. I AM STARVING ALL DAY EVERYDAY! Hungry! Hungry! Hungry! It's consuming me, it's all I think about and I get nutrition through my feeding tube so I am not literally in trouble starving... It's still miserable! I have also found others with gastroparesis go through this, and we end up eating and making ourselves sick because of it. I don't know what to do about this! I would appreciate any advice and I will share it! -Hungry Chelle.                           I am grateful for Iv food but it's getting old!

Thursday, July 16, 2015

Don't be Afraid to Leave your heart on your sleeve

Most the time in the chronically ill community we put our game faces on, brush it off the best we can, and say ,"I am okay!" With big smiles but what I think I should say some times is, " I am NOT okay." "I am struggling to live with my illnesses" " I get sad too." I don't mean to say we should run around airing all of our dirty laundy to everyone we know... but to wear our hearts on our sleeves to let others in. Especially those with a deeper understanding of chronic pain. Like our spoonie friends! Opening up can open doors for a fellow ill friend to feel not so alone in the war and it will bounce right back to you and you will see you aren't alone with your illness struggles, as well. We all go through dark times. Where I feel alone the most is in my pain, the mental pain but I have come to find most my sickly friends grieve and go through similar things I do. Sometimes letting others see our open hearts (I believe) will bring good things to come. Pray earnestly in dark times for you are never alone. God is there our savior Jesus Christ is there!! If you ever are feeling alone or hopeless please feel free to message me anytime! We can break down barriers of not understanding and hopefully reach a new level of compassion towards others and ourselves. A song by lady A called never alone goes "may you win but stay humble Smile more than grumble and know when you stumble you're never alone "Your friend-Chelle

Wednesday, July 15, 2015

Something Good

I am currently on my porch being eaten alive by bugs! But it's a wonderful evening out! Mr.Wrecker and I are taking advantage of it!! Today I submitted my first few images to the Dysautonomia Project. I am volunteering to make awareness photos about Dysautonomia. I can honestly say it not only feels good inside to be helping a great and personal cause, but something inside me feels whole again. Like I have a use again. My heart is happy.When you don't have something to do every day...or somewhere to go you loose something. But hopefully I am on the path to patch that up! Be you in whatever you do!-Chelle
To learn more about the Dysautonomia Project: https://thedysautonomiaproject.org/

Tuesday, July 14, 2015

Blanket Hoarder

I bought another blanket! I have a problem. It is official!! Some women buy shoes not me I collect blankets! Hope your having a good healthy day and if not stay strong, You got this!!!-Chelle 

Monday, July 13, 2015

Double Tubie Shot

I know I haven't posted a double Tubie photo yet. showing both my g j tube and port accessed. I don't post these pictures for immodestly because modesty is important but to raise awareness about what I deal with on a daily basis. (And others who are tube reliant) My struggles with my conditions! I think it needs to be an open road for patients not to be judged by our tubes. These tubes in me, keep me alive! I wouldn't be here with out them! They make me safe and give my body the fuel it needs. I am proud of these tubes they are a badge of courage. Sure sometimes I miss the old non tube version of me when I ate regular and people didn't stare or act funny around me or turn their heads in discust simply from not having a true understanding of a feeding tube. But humans are humans and it's ok if you don't understand. You probably have not dealt with a tube. But I promise they aren't as scary as they seem or look. Stay beautiful and strong ! Xo-chelle 

Sunday, July 12, 2015

Warrior

https://m.youtube.com/watch?v=gZFjauf_hZg
Demi Lovato signs Warrior wonderfully...
This song hits me, I am a warrior....
"Now I'm a Warrior now I've got thicker skin, I'm a Warrior I'm stronger than I've ever been. And my armour is made of steel you can't get in I'm a Warrior and you can never hurt me again."... " I've got shame I've got scars that I will never show I'm a survivor in more ways then you know"
Battling a disease is never easy you tumble. You fall. You hurt. You fight. You keep going. Because the second your body is touched by this beast that's the second you will look back on with great pride knowing even if you didn't physically beat it...you became a Warrior. You came through mental and physical hurdles. Illness shook you and coiled through you at times leaving you weak and weary. Maybe it took everything this world had to offer...
 the mental hurdles sometimes are the hardest. Definitely the scariest (for me) emotional scarring is as evident a a scar on our bodies to us personally but you can't see those emotional scars on the outside...others can't see them. We have to show them or keep them hidden. They stay deep inside us locked up. Our hearts hurt in ways never thought possible. The mental pain can become more intollerable than the physical pain. The emotional toil can guard our hearts, with the intent to protect us from any further damage.  Gloom can take over...and it will at times. It's not easy. But let it out because once that pain is out... that emotional bag of junk and pain is gone. Peace comes. The struggle to be brave, once again will face us....and I will be brave with you and together we can keep going despite the Struggle. We can't forget the damage the illness brought to our once peaceful life's.But you faught hard. Keep fighting....you are a Warrior! God has a eternal plan for you, stay strong. You have great worth. Your life is so important and in any situation you are full of divine potential. But sometimes a good cry is needed. Don't let those tears appear to be weakness. Tears are a great strength.(even the perfect human Jesus Christ cried out) -Chelle

Thursday, July 9, 2015

My 4th

  Especially Best Mom Ever!


                       Sister and her husband(brother)
I love this grandma of mine so much!! 

My Fourth was good and simple. I went to the parade luckily my family has a business we always gather at (and more importantly it keeps me cooled off so I can go)
Then back home for rest a a bag of saline to keep me going.
Then to my sister's house for fireworks!! Then the 5th in bed recovering!!
       
Taking it easy today... with Mr. Wrecker...I  have encountered a bad Lichen Planus flare and had to up.my immune suppressant and steriod creams, sometimes I wonder how my body does it all I read today POTS patients take three times the energy just to stand... I guess instead of complaining about my symptoms so much I have kinda stood in amazement. Dealing with the yearly nightly monsoon migraines aren't fun but working on my brave -Chelle

Tuesday, July 7, 2015

It's the Struggls That Make Us Strong

Lately being sick has taken a emotional toll on me. It's a struggle that can seem endless at times. Brought on by medical mishap. Physically suffering from symptoms simply for too long, countless pills, side effects, implanted foreign objects in my body, scars, doctors appointment, finaces, and the management that comes with it all. It can really make you feel hopeless and alone. It will test your greatest strengths of what you can truly bare. But you don't have to do it alone. I can say God is there and knows your situation. He also knows your strengths and what we are capable of handling. So he will push us to our greatest potential. Sometimes that means tough love. Tests and trials. But we are NEVER alone.
    As I prayed last night feeling hopeless and alone, I asked for comfort. For knowledge that I wasn't alone in this battle. Though I felt very alone. Shortly after my prayer, I would no longer feel this way for long. Hanging out of a scrapbook full if scripture quotes,that was not yet glued in read, "have I not commanded thee? Be strong and of a good courage. Be not afraid, nor dismayed: for the Lord thy God is with thee withsoever thou goest." Joshua 1:9. This is true, my heavenly father was speaking clearly to me. So today I put my faith first and stand stronger and braver than before-Chelle

Wednesday, July 1, 2015

POTS Control

At IV therapy getting my saline infusion, using my port!  Wearing my new super comfy and cute compression socks!!! Getting through my POTS one day at a time!! -Chelle
Here's The compression socks link: http://www.celestestein.com/