pretty lights & medical updates

Really enjoying my new lights. I love candlelight. I find it relaxing but since I have these seizure tendencies the flickering is pretty much a trigger. So now I get the similar lighting without feeling dizzy,swallowing my tongue, tremors, confused, and a throbbing headache. It is pretty awesome and cute!

I realize I have not been talking so much about what is going on with my health. So I will start with...as I type this my feeding tube clamp is stabbing me. As it always does when I lay on my tummy. My stoma has been sore and bothersome but my feeds are at 55Ml an hour!! The highest level ever! Wahoo! I am blessed with this tube to sustain me life:) 

Some of my medical issues are improving most are waning. It's all unpredictable. My tummy is bothering me today. Digestion is slow, which means for me nausea,pain,bloated, and a wasted trip to the grocery store.... I rocked the I'm sick and tired because I have dysautonomia look

I thought I was getting enough fluids of all Pedialyte through my j tube and I read the bottles wrong...I am getting at most a liter a day and I need at least two a day. The salt tabs I stuff into my formula and Pedialyte. However it's making sores in my small intestine I think and I know it's creating a ton of acid. But in warm weather I start being seizure like and dizzy, then my head pounds every time I get up... and then some...I keep using the term "seizure like" because we haven't caught them yet. I had an 48 hour eeg but haven't heard back yet. (My neurologist has been on medical leave) I see him in two weeks. Yay.! My endometriosis I suspect is not doing well. Hence my horrible periods. I recently tried birth control pills to treat this... or horror mones I call them but within days I was just more miserable. I was on those pills for most of my teen years and they never helped. I had 2surgeries to remove my endometriosis and might be having my third in the nearer future. Oh and the roof of my mouth is swollen and covered in sores a.ka. Lichen Planus. I'm going to be better about updates concerning my health_Chelle

Proud of

Just a friendly reminder: as sung, By the lovely Montgomery Gentry... "if you are doing what you're able and putting food there on the table and providing for the family that you love. That's something to be proud of" ... Sometimes that is hard to keep into prospective in life but if you are doing the best YOU can. Than that truly is something to be proud of. Even if you can't work like me. It doesn't matter what any body else thinks... if you're doing the best you can do in your situation. Be proud! -Chelle

Pain is Pain

I've been thinking the past while... Pain is pain. In ANY form. No matter how you break it down. It doesn't matter what type of pain a person has, nor what causes it. In any case it's excruciating. It's tiresome and it will wear you down... Sometimes until you break. Pain is unfair, unfortunate, and unkind. It doesn't always go away like we'd hope (sometimes it will) and it doesn't matter who or what you are... it can afflict anyone. It doesn't matter if it's temporary or permanent.

     I strongly feel pain is a crucial part of life though. We all go through pain in our lives, one way or another. Mental or physical. It has the ability to teach us lessons. For instance in my case (and any other) I want nothing more than to be rid of my pain. But my pain has pushed limits and boundaries I never would have without it. Pain can strengthen us if we allow it. It is another way to be molded I suppose. Think about workouts they hurt... growing muscles (strength) is painful.  With the situation I've been dealt, my pain must be a stairmaster and a million pound dumb bell. I think every one feels like that sometimes struggling with a chronic illness. Don't get me wrong though when it comes to being the pain recipient I come dragging my feet. No matter what disease, condition, or syndrome... they all are struggles. Keep fighting. You're worth the fight. Even if no end is in sight. Looks can be deceiving. Just a thought-Chelle

Check out Peach's Neet Feet

I came across this super awesome organization called, Peach's Neet Feet! Take the time to check it out & donate a pair!! I think what they are doing is so awesome!!! https://www.peachsneetfeet.com/ -Chelle

I will not quit

Today I am tired. I woke up at noon and still feel worn . The hormones didn't work...they only took a few days to rock my system and make me symptomatic. I stopped them Saturday. Still waiting on my poor doctor to call me back. I don't really think there is anything else to do for this issue via hormone wise. But I will continue moving forward. Last night I slightly pulled my j tube out while cleaning it of all things! It seems okay... time will tell. I did drag my self onto the glider for an easy work out. My body disagreed that it was easy... I will not quit. Baby steps. One day at a time.-Chelle

The Tube Diet

I want to explain something that people commonly think about tube fed people. We may have a medical reason for a feeding tube, but that doesn't mean we are always sick. In fact there is a big misconception about feeding tubes. A lot of people commonly and understandably think feeding tubes make you sick. But in reality a person who has a feeding tube can't for whatever reason gain enough nutrition by mouth to sustain themselves. So a feeding tube is a tool that replaces the missing nutrition. Which in turn makes the tube fed person healthier because now they can get proper nutrition. Sure we may live off formula and yes a tube is scary at first. (For anyone) but at the end of the day we just have a different diet than the regular person. We eat just in an unconventional way -Chelle
I had a picc line for TPN (nutrition through a central line that puts nutrition through this blood stream)

 Then I had a Nasojejunal tube (a tube that goes up your nose, down your throat, and into the jejunum a.k.a.small intestine. That uses formula)

 Now I have a gastronomy/jejunal tube. I feed through the jejunal tube (formula) into my small intestine. I vent (if I get sick) out the gastronomy tube which is in my stomach. That entails a huge syringe and pulling out my stomach contents. Yuck

look it in the eye

When it gets tough. And it will. You look it in straight in the eye. Show that thing who's boss,and keep fighting with everything in you. Some days will feel endless. Some will take it all. But as long as you keep going you my friend, are indeed on top. So remember... look it in the eye with everything left in you! Never give up. Even when it seems the only choice keep pushing. Remember you're never alone. Sometimes it has to rain but Jesus knows you and is aware of your sufferings. He knows how you're feeling and he and God have endless love for you. Even in despair.  -Chelle