Medical Update

Just a quick update because I am so starving that I am weak and tired! My j tube is out of place. Monday I will have n endoscopy to fix it. Meanwhile I am not getting adequate nutrition nor fluids. I did get a liter of hypertonic fluids last night. On the bright side all I've been doing is watching Lizzie McGuire...odd I know but I have watched everything else in seems. It takes me back to the simple good times of being a kid back when things were better! Haha. Hanging tough-Chelle

Butterfly is coming out of her Cocoon

These are my "Hollywoods" as my grandma S. Calls sunglasses. It's rather cute of her I think! 

Listening to love at home by the tabernacle choir, what a way to put the spirit in my heart! Feeling full of my Savior's love for me. In these simple moments of a song, I grow a stronger grasp of my testimony, and all life's purposes... yesterday was a fight day. A day of me trying to improve myself for the better. I get easily upset when dealing with medical testings. I think because I know my body so well and I had to fight for so many years...It's just my reaction now. I am working on changing that. Why upset myself when I don't have to be? I also felt very sickly during the two hour wait for my stat X-Ray of my feeding tube. But I got through it and I am proud. I can choose to look down upon myself in these moments or I can choose happiness, bravery. It took a very long time to come to terms I couldn't will the sicknesses away. Even longer to come to terms that I truly can't judge my happiness by how I am physically. I have to adjust. Sure bad days come, and bad days go...every one has them! Maybe in different situations, not their health but others get upset just the same...stressed, sad, mad. Everybody has emotions and problems in life. Mine just happens to be my body and health.  I have suppressed life long enough. Time to move forward. To be happy to the fullest of my abilities. Time to grow spiritually. I will always be sick, but that is NOT something that devalues me in any shape or form.(nor you) Look for happiness outside your health, set reachable goals. Put your focus on the Lord. Let the spirit guide you like a compass. Put others first if possible for you with your health. Simple acts of kindness, I can say are total 360s. That kindness turns right back to you, is contagious and more hearts will be filled with joy and look love! If you're feeling low put some makeup on, fix your hair... even if it's just for you. We don't need makeup to be beautiful, beauty in inside us, but it can lift my spirits when feeling low. Stay strong the Lord loves you. Jesus Christ loves you. Always, dream big, reach for those stars. Laugh out loud daily. But cry if you need. You are a super star! Believe in yourself and I will believe in me! -Chelle

Broken no more

The Lord let me know I am not broken any longer... my heart has hurt as my life scattered everywhere... out of my control. Like a deck of cards stacked into a tower, knocked down. I have sobbed to the deepest of pains. I have had days, months, years of struggles. I have begged, pleaded even with God to pick up my pieces and put me back together again. I prayed for tape and glue just to attempt making it through those long impossible days. I feared the worst, death. Then feared being alive but dead (metaphorically) I lay in bed and attend doctors appointmens, in which I would be treated as "crazy" or "attention seeking"...I may not be well physically, but my soul is healed. I can stand on my own strength.-Chelle

A Tuesday At Home

After listening to Hilary Weeks posted video (she posted it to facebook) this afternoon, (Chelle's morning), I felt a pep in my step to move forward and get out of bed. I decided I was going to make myself cute and put my makeup on, do my hair, and dress in cute but comfy clothing. And I must say I am proud! I didn't have the worst night last night with my sickness ailments but I was up until 2 a.m. and my tummy has been super angry at me since I ripped my Jejunostomy tube out of my Gastronomy tube about a foot. Yikes! I pushed it back in and now am having cramping and nausea when I start feeds but it's complicated and I still am getting my feed in. I truly hope nothing is wrong with it. Yes, I am tired and achy today, my tummy hurts, I have a heavy case of allergies, my head is throbbing. But I live with pain and symptoms so today they are not going to keep me down. At home? Yes. They will keep me in my house today but it's okay because the wind outside is atrocious!  Thanks Hilary Weeks you have me looking at the positives today! So after makeup and putting my hair in a bow, yes not putting a bow in my hair.... but my hair into a bow. (I love bows) I am still waiting for the doctor (neuro) to call me back, my neuro Dr. Saperstein, is on medical leave. I pray multiple times a day he is healing well and coming back to save me! (I know a little selfish there!) you see, I have lost 2 doctors and it has been very hard on me. The other doctor in his practice is filling in for him so I assume since they are busy as it is... I maybe will get a call today or tomorrow. My POTS "flared" 2 weeks ago and is not getting better....lots of irritating symptoms and even more pain. My biggest worry though is at night I might (we think) be having seizures. I started this a few years ago but it only happened in the e.r. when I was super sick with my undiagnosed at the time POTS. Now it is happening regularly and it scares me. What happens is; I am alert but very spacy and brain foggy. I can talk but it's messed up and I can't think of regular everyday words. I am in a lot of pain always. My eyes roll backwards not on my command and my tongue goes to the back of my throat. While I tremor uncontrollably. I also seem to be very anxious but it is because I feel so out of control of my body .... see unusual to do that... it is scary. It always happens at night unless something brings it out. but I need to know why my body flops around like a fish... uncool! So I am nervously waiting to see what the doctor has to say and think... Today I will post a picture of my bow bun... I love them. and I decided to take a picture with my friend IVY. She doesn't get enough attention for all the hard work she does ( yes I am speaking about  my IV pole and yes I am joking) Happy day, Bright thoughts-Chelle

aquaphore post reply

P.s. I forgot about the aquaphore post earlier.... I LOVE it! I use it for around my tube site and for extremely dry lips.... as you know with having POTS we tend to be dehydrated causing dry skin...I have tried hundreds of chapstick products for this annoyance and when your lips are peeling A. It's hard to feel pretty and B. Lipstick and lip gloss just make the issue worse ....so putting it over the lip liners,sticks etc really helps. Hands down my opinion, don't waste your money on anything else if you are struggling with this issue just get the aquaphore and use it...I know it's on the expensive end but for me anyways it truly works wonders! Plus it keeps my tube site happy and not dry or sore... however I don't use it daily around the tube... I use it often though. Anyways, hope life is treating you well, xo! Until I blog again-Chelle

Easter 2015 in a nutshell

First, I hope you all had a very happy and blessed Sabbath day this Easter! Conference fed my spiritual needs and I am now ready to start working where I need.

My Easter in a Nutshell...
Woke up early (any spoonie knows how hard that can be) got dressed and we were off to fly kites.... it was soo windy I was miserable. Then my dad and Brother in law basically were the only ones enjoying it haha. I did fly one for a minute literally if, even that long.... turns out my great idea of doing something we did a kids on previous occasions wasn't so great. Then we hurried home to eat a simple lunch. My poor Mother Bless her heart prepared enough food for an army. We had chicken salad sandwiches, macaroni salad, chips and of course dip, and a veggie tray....oh and the disgusting  cheese and pimento sandwiches my whole family loves (except me). Haha.(if you're curious I did eat lunch.... I had a few bites of chicken salad sandwich and a few bites of macaroni salad... and a about 100Ml of formula.)

Then I made an Easter Bunny Bread Bowl to take to dinner at Grandma's. She did the classic ham, twice baked potatoes,and rolls.... a million more goodies...

How hard it is to have Gastroparesis on the Holidays. But I know my redeemer knows how I feel in times of hardships. It is because of him I keep moving  each day and finding those blessings in my life.

We of course got our farm cookies... that I may have already broke into...these bad boys are scrumptious.... we received them as kids from the Easter Bunny himself. You can find them at Hobby Lobby. That's my Easter. -Love Chelle

Boxing Match.

Tonight we are trying something new.... Ivy is going to sit at the end of my bed! Hoping for easier access to move around.

On a total unrelated other note....
Just 24 hours ago I was feeling down about myself and really beating myself up mentally.... over things I had no control over. Like my body a.k.a. my health, my daily energy, I couldn't eat, I am not pretty enough,I am a freak of nature... things that, that make you really feel like you don't add up. It's toxic I do it to myself, we all do. There is always going to be someone better, prettier, taller, smaller, smarter, .... you see where I am going with this? There is always someone who has something you don't in life. Why? Each and every one of us are different with each our own path and eternal plans. See, I knew this yesterday but my heart felt broken and I felt low... but then I reminded myself that I will feel better again about myself and things will work out and be okay. My heavenly father loves me. That's all I need to know. Tonight I am feeling much better. For I know in my heart I have great self worth and much to offer this world. Things are not always my way, or as I would prefer them to be. I look at all those times and know that even though I had to sit out or wait, though I did not at that second get what I wanted. I will always receive something better in return. That I know because of my Savior Jesus Christ.  Which got me thinking of this quote by Gordon B. Hinckley

 

This quote is a favorite one because it suits me so incredibly well... and that's okay. Knowledge is power. Now I can continue working on myself and who I want to be! I don't pray to finish the race. But I pray I can keep moving forward with endurance until it's time for me to finish the race.-Chelle