Tuesday, June 30, 2015

Where to get cute compression socks

I just got my new cute Celeste stein therapeutic compression socks! I love them! If you have POTS I highly suggest these stylish things!!! They are very breathable. I ordered them off Amazon. But here's their direct link: http://www.celestestein.com/

Cold feet no more-Chelle

Monday, June 29, 2015

Chopp, Chopped!

I chopped, Chopped my hair off this weekend... or I should say my sister chopped,Chopped my hair off. It was time for a change. My port is pretty much healed. In fact I am getting a bag of saline right as I type this! I am doing better! Yayy.... gj feeding tube is very painful still and bleeding inside the tummy.

I am so blessed to have such a sweet and talented siste, who can color and cut my hair at home. Otherwise I truly don't think it would be an option for me to get my hair done at a salon.she even lets me elevate my legs in her cupboard.-Chelle

Thursday, June 25, 2015


I have been recovering and coping with my new or not so new lifestyle. My heart is going through phases of this isn't fair, this can't (although it already has) be happening... to I can do this, finding heavenly peace,to finding how I do help others daily. Even with my disabilities...with my thick illness. Yes, I am scared right now. Not because anything's particularly"worse" I have what I have. It seems and wanes. But because being sick is hard and scary. I want to quit but I cannot... it's not an option.ever. so trekking forward I will, with hope in my heart for a brighter day. I am sad and depressed at times. Ask anyone who is ill all the time... they will be lying if they say it never happens. We have to grieve it. But I know through my heavenly father I can find peace. That was something strong in my priest hood blessing last night. I know heavenly father knows me,and my sufferings. He also knows the bigger picture I don't. I trust him with it. Just put your faith in God and he will bless you. That's something I knew but have relearned this past week.

I had to share my funny feeding tube dilemmas. The problem: the bottom of the tube is too weighted and pulls really hard like an anchor. Causing pain. I tape it and it just falls off. Any ways my fix: who needs a neck pillow for their neck?? Me I use it for a personal tube holder haha

Monday, June 22, 2015

The Life of a Tubie

Friday morning at 8 in the morning my port was placed. I did have a reaction from the antibiotics. I was literally red from head to toe and swollen and itchy!!
Then my feeding tube clogged for no reason... I ended up in the hospital that night and I had a new tube put in.I was wide awake through the whole thing! radiology. I am just glad to be back home resting!!! I hope all the fathers had a happy Father's Day!!!-chelle

Wednesday, June 17, 2015


Today has been a definite dysautonomia day already... I woke up in the middle of the night in a puddle of sweat, everything burning, a bad headache,Tummy ache, nausea, cramping, I felt awful. I unhooked my feeds and fell back to sleep. Then this morning on dragged myself out of bed and dropped my handicapped card paper work to my doctor... because heat intolerance mostly. But here's why I need it just walking into the Dr handing the receptionist a paper walking back to car. Then getting dropped off at the front entrance at hospital.... for iv therapy. I got to iv therapy sat down, said a small prayer then I just passed out sitting down! I fell sideways and was hanging off the side of the chair nearly upside down until the nurse got me aware.I remember feeling funny before kinda floaty. I think my blood pressure was low. But I am hooked up to fluids now! -Chelle

Tuesday, June 16, 2015

A Dysautonomia Day

Another day of iv therapy... just saline ivs for me. Today is my four month feeding tube-aversary!! Coincidentally today I have been taken off high caloric formula and put on normal caloric formula because now that I get fluids iv I have reached feeding goal!!! And I feel like a person today. My blood pressure was a little low yesterday but today it is good. Phew!! Port Friday morning and see neurologist after! I think I can I think I can!-Chelle

Monday, June 15, 2015

Happy Dysautonomia Awareness Day

Spread the awareness of Dysautonomia. Dysautonomia is my reality of every day life. I have spent every day (even Saturday and Sunday) in iv therapy since my.long emergency room night on Wednesday last week. I still don't feel well and will be getting a port for iv fluids. I have a feeding tube to eat due to dysautonomia paralyzing my stomach. It effects everything my body should be doing without thought.... breathing,heart rate,blood pressure, eyes dilating. And so much more! Dysautonomia is a malfunction of the autonomic nervous system or A.N.S. to learn more I added a link!http://www.dysautonomiainternational.org/page.php?ID=34


Today I am pretty transparent a.k.a. super pale. And puffy. Which shows my body is so angry still. I have become anxiety ridden since yesterday. This is not my normal at all so I hope it passes. Bottom line being sick can tear you apart. But you just need to keep pressing forward every day...
Yesterday at iv therapy there is the sweetest lady. She appears to be paralyzed from the waist down. She comes in for an iv the same time as I do every day. I need to catch her name. But she is so sweet and she tells me how amazing I am and it warms my heart because I look at her and her struggles and I think she is the amazing one! It's people like this dear lady that make being so ill okay in those moments.Still fighting-Chelle

Saturday, June 13, 2015


Hallelujah today I finally made a turn for the better... my Neuro got me sleeping again, thank you medication. And more iv therapy. No more hpertinonic iv....those should only be used in hospital settings with lab work and monitoring. Or if sodium levels are low via lab work. I am bummed about how fast and hard I fell back down but know that I can get through it. Gosh when I said earlier this week,th that I was going to be better on medical updates. I didn't mean I needed to fly off the handle and crumble with this syndrome. Haha but in all seriousness...God is there, in blue skies or Gray... just pray! Xoxox-Chelle

Thursday, June 11, 2015

Dejah Vu

Totally having dejah vu... spent along agonizing night in the e.r. and rotten treatment. Now I am at i iv therapy and just found out no more hyper tonic iv without a central line. Ugh losing-Chelle

Wednesday, June 10, 2015

New Neuro Plan

Yesterday my Neurologist and I had a nice phone conversation. (No sarcasm, it was truly a great conversation) my favorite part of my neurologist is that he talks and treats me like a person. No brick walls or sharp mannerisms, no lack of acknowledgement of my issues.  But long story short we came to the conclusion that I need a port for sodium and fluids. I am soon again to be a SUPER tubie. I have never had a port before. But I have really been feeling peace with things. I will continue to listen to my fight song -Chelle

Tuesday, June 9, 2015


My POTS is not doing so well. I am struggled yesterday. I have spent the whole day in bed nonfunctional. I think.oh am lower in sodium but when I try to eat more through j tube I have pain. Now I am not tolerating feeds. Also having lots of abdominal pains..my hands are weak, numb, and it takes every thing to type. I am actually pretty miserable. Standing is a chore my heart was racing to the point of waking me up. Very nauseous and I spilt my pill box all over .
This is just a POTS day. I am not unhappy. Just working on being patient I've reached a new place in life that is giving me peace.in my heart.I have a drive here on earth. I guess now it is time to call the doctors and let them do their parts.-Chelle

Monday, June 8, 2015

Take Me to Church

I had a wonderful opportunity to attend sacrament meeting today. My heart is full and I am happy. I was running late (medical problems will do that to you) so I only have a picture of my super cute heels I wore and my post naptime photo haha. My favorite part of today is I said a quick prayer before I left and I jumped in the car... turned the key and thought "oh, if only my song was on." My song came on... fight song by Rachel platten.  My heart was beaming with the spirit. Those tender mercies are what keep me going forward! Xo-Chelle

Saturday, June 6, 2015

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

Thursday, June 4, 2015

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

Wednesday, June 3, 2015

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

Tuesday, June 2, 2015

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

Monday, June 1, 2015

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