Thursday, May 28, 2015

I Work Out

Working out is crucial to POTS treatment. It's not a cure but it definitely helps. My favorite way to work out is in my slippers. Yes, I did say slippers. I walk on the glider in them and it's quite luxurious. Haha. Well not really, but it keeps me going forward. Plus, the leopard print helps (wink) Don't let anything stop you-Chelle

Wednesday, May 27, 2015

Big News

My doctor is ordering me a Mic-key Gastronomy Jejunal button tube. I could not be more excited!! My tube now is long, and dangles always... plus it has a enormous clamp! My j tube is starting to not stay closed due to just use but I may have left that out lol in no rush to switch out tubies (endoscopy/surgery)
But my new tube will be a tiny button with extension tubes you click into the button while using and remove when not in use. This Girl is Excited!!!

I also traveled 8hours yesterday for an appointment and ultrasound because I have more than normal pelvic pain. Especially on periods Endometriosis is stupid. I now an trying an option that until yesterday was not an option since surgery 3 years ago. I have a condition birth control pills can effect called vestibulitis. The hormones will hopefully stop my cycles causing no pain and hopefully helping my POTS get better because my cycle really triggers my POTS/DYSAUTONOMIA.It is a last resort type of thing. I was on horror-mones from 14 to age 19 for endometriosis and ovarian cysts... they never once worked, so I am a Debbie Downer about the situation (Sigh) I will keep focusing that my doctor said I don't need surgery yet! That's great news because I want my feeding tube changed!-Chelle

Monday, May 25, 2015

Sweet Sister Sue.

  This post is solely for my wonderful, creative,amazing big sister. She is the best sister in the Whole Wide World and yes, she is MINE!! She sent me the sweetest video of two sisters singing "I Won't Let Go" by Rascal Flatts. This video made my heart bursts full of the goodness and sweet unselfish love my sister has for me. We have an unshakable bond, that no one else can share. Nor understand haha. She is the Louise to my Thelma, she would go to the dollar gentral for me any day, and if my nail do like that. (She'd accept it)... She is with me 100% of the way no matter what. We can laugh all day about nothing or about our silly inside jokes, "THAT SIGN SAYS MILE 265". No one else would surprise visit me on thanksgiving when I'm in the hospital and pull it off!
This song made me bawl like a baby. They where good tears of love. Sister tears. I wouldn't choose anybody else in the world to stand by my side. To fight my fights with me.  To help me through. To laugh with me. To laugh at me.  In times of enduring trials I have a sister to dry my eyes and be my strength. I hope she knows it's 100% the other way as well. I will stand by you too! I've got your back... My sister is an honest heart and speaks what's on her mind... I wouldn't want to hear it any other way. My sister is a joy in my life and we fight like cats and dogs because we are polar opposite... but that's what makes our relationship that much stronger. We are special. YOU are a ray of sunshine in my life. God gave me a gift when he gave me you!! I Won't let go. Ever. - I love you times infinity...your sister, Chelle.
Link to video:
Happy Memorial Day! A HUGE thank you to our very brave men and women who have fought and put down their lives for our country. May they and their families be eternally blessed!  Today was rough but I attended a cousin's graduation party and enjoyed a cup of circle k hot chocolate for the first time in well at least a year. (I would guess.) Not gonna lie my tummy aches... gotta love gastroparesis. Just kidding! I may sound funny but that little cup of hot chocolate was like a tiny bit of the old life was back -Chelle

Thursday, May 21, 2015

Woke up to Endometriosis

I will be staying right here in this bed all day!
Well I woke up early this morning to lovely Endometriosis pain. Can you say stabbing knifes into my pelvis? The pain has been persistent and high on the pain scale. I took Tylenol and it didn't work... so just 6 more hours of this until I can try pain pills.. I'll keep fighting you, you very stupid disease. With Endometriosis, at least for me when you have to start taking pain pills (narcotics) on your menstrual cycle... it's time for surgery (laparoscopy) via Dr. Anita Desai (for me) she is super good! As well as Dr. Michael Hibner!! At Advanced Pelvic Pain at St. Joseph's hospital in Phoenix AZ... bad news for me though... just when my POTS seemed to be stabilizing... I will have to chance my good stride for exchange of endometrial tissue excision. Oh, speaking of that. If you have ever wondered where I sit in the whole excision vs. Laser removal. I have had both and prefer excision it gets it all where laser can leave tissue behind. Have a blessed day xoxox-Chelle
To learn more about Endometriosis click this link to the EFA:

Wednesday, May 20, 2015

My New Theme song

This week I have found my fight again. I am working harder then ever to gain strength and feel my best! Excersice is crucial to POTS. I am sure you will remember how hard I tried last summer afternoon being diagnosed with POTS my daily attempts to work out but I sadly made very close to no progress. In fact I was getting worse. Looking back I have treatment now and NUTRITION!! Nutrition is very important for healing in general or getting stronger.last summer my stomach was paralyzed and I am now tube fed. But if you feel like you can't do it (workout) just keep trying and this is coming from the girl who started an all in bed laying down workout routine but I can ride a bike now!!! It's such a blessing. To think my little body was shutting down just 8 months ago...
 The reason for this post is to announce how I did something totally amazing yesterday!! I danced for the first time in years and it felt so liberating! A piece of me is back ... there really is no explaining it. I danced till my toes were sore...:)Which brings me to my theme song (which by the way got me to dance) called Fight Song by Rachel Platten. Amazing song! I will NEVER quit fighting. Fighting is a part f my soul God gave me the fight to fight these hard trials. I also had a beautiful confirmation today about something I need to start working on. Feeling so so very blessed today and encouraged. Please keep fighting your fight always xoxox-Chelle
The Beautiful Lyrics to Fight Song:"This is my fight song. Take back my life song. Prove I'm alright song. My powers turned up starting right now I'll be strong. I'll play my fight song and I don't really care if nobody else believes cause I still got a lot of fight left in me."

Monday, May 18, 2015

My Sickie Sleeping Secret!

You know by now I only share products,  or remedies that truly really work well for me! This I've only been using a month. It's inexpensive and natural. Which is funny because I wasn't one to follow any natural remedies... I kinda would scoff at them when physicians suggested it to me. (Not now) As you know my autonomic nervous system dysfunctions. That's what is wrong with me. A huge burden of that has been sleep deprivation. My brain literally would not shut off or go to sleep. Once, I didn't sleep a minute for a WHOLE week!! It was torture! I have taken antidepressants and sleeping pills for this with little help. When my doc suggested melatonin I ignored her... I kept going  "ya sure" until one day I broke down my stubbornness and bought it. Yep I take about one mg a night and sleep pretty well. I fall asleep within the hour and I sleep all night. My doc said I could take up to three mg. So wiggle room. So if you can't sleep try melatonin if you haven't yet... It's worth a shot! I would like to add I am not a medical professional nor do I take place as one... talk to your doctor first please**** if you're a tubie like me I use liquid melatonin through my jejunal tube. (Feeding Tube). -Chelle

Sunday, May 17, 2015

It's Not Permanent (struggles)

YOU are beautiful in every single way.
I took a few days off from blogging to have time to self reflect. I have been feeling better lately (physically... healthier). Strangely however, I have been terribly upset. Not because I feel better but feeling better has allowed some negative realities to come out. I am realizing how far I truly fell. How sick I truly am, and with a very complex and confusing medical syndrome no one knows about. I am realizing how much of life I have truly missed out on. That time can not be given back to me. That this whole world is pretty different from the world I lived in as a girl nearly nine years ago. That the burden I carry is truly heavy and I guess I have been feeling jaded. But that all stops now. I realize I will have moments or days where yeah... this bumpy road is gonna get me. But I am not going to live my life feeling sorry for myself because I didn't reach all my goals. Or things didn't turn out the way I planned. Sure, I should be graduating college right now and starting a career or be married like all my friends... but apparently I have a different calling in my life (not cutting out marriage lol just must not be the right time. Nor college... you never know) but if anything has been clearer to me it's that my heavenly father loves me very much. It's been a long week and I prayed for a sign that I was okay, that he heard me ...I then proceeded to turn on Pandora. The song Beautiful, came on... (You are beautiful no matter what they sat words can't bring you down). That song spoke to me and I knew My Heavenly father heard my heart. Suddenly things became better, clearer....  I have a purpose though I don't know what right now. But time will tell. I'd like to say that time heals all wounds but I'd be lying if I said I believed that. I think pain is a awful but crucial part of life.... in every aspect. It's harsh! But I know my burdens and pains can be eased by my creator. Times are tough but we are tougher.  Trials bring blessings. Have hope for the future and if you need you can borrow mine tonight. "Chelle's Hope, One Day at a Time", quite literally! -Chelle

Wednesday, May 13, 2015

I'm taking a break

I am just informing you, that I am taking a break. I just need some time to think things through. I am doing pretty well actually but I need some time to take a deep breath and figure something things out. It may be a few days or a few weeks I'm unsure but I'm not going anywhere, just taking five. And no my faith is not shaken, no crisis has taken place. I am totally fine! Just taking personal time to reflect :) love you tons-Chelle 

Thursday, May 7, 2015

What's Up

Getting my 48 hour EEG on in the morning. Hopefully it will show some answers to these episodes I've been having! Feeling better today. The bug is gone and my feeds are close to being back to normal :) Hope you have an awesome weekend!! Xoxox-Chelle

Wednesday, May 6, 2015

Stomach Bug.

Well, I wanted to be like everybody else. I officially am, I have the 4day stomach bug that has been going around. I started not tolerating my feeds yesterday afternoon but, thought I just needed a break. So I hooked back up at bedtime (like I always do) and woke up out of a dead sleep miserable. So feeds have come to a complete stop. Not good for my health! So I am on the Pedialyte diet at a slow 15ml an hour.... trying to stay out of e.r. with dehydration... I have POTS so, a good chance I will e end up there. I have a 48 ambulatory eeg this weekend... so needing this to pass! I have a very sick friend, please pray for her. All prayers are appreciated! Thanks-Chelle

Tuesday, May 5, 2015

Mirror Mirror on the Wall...

This spoke to me last night after watching it.....what do you see in the mirror? When I look in the mirror first, I usually see a disheveled girl... who is aging daily as time passes by. Then I see my dark circles under my eyes, my pale skin, my iv or blood test bruises, baby hairs growing back in from my malnutrition, my scars, my feeding tubes, ... where I have been. Where I may be going. I see broken but in the midst of broken I see beautiful. I see strengths I never knew. I see power within my heart to do good and be good. I see a fighter that Never gives up. I see courage. I see compassion. I see the impossible. I see all this because of God and my redeemer Jesus Christ, and all their love for me and you. I see Michelle with a life, and a plan eternal...i see the opportunity to be better. Think about it....what do you see in the mirror? -Chelle

Monday, May 4, 2015

Push through the Trial, Bask in the Victories.

These past few days have been incredibly rough, as well as, incredibly amazing. Friday started out rough finding out my Neuro isn't coming off medical leave until mid June. The anxiety builds just thinking about it! I have lost docs before it is not a walk in the park.... it's pure torture! So every time my doctor goes on some sort of leave. I panic. I also am doing horrible with getting my daily sodium and fluids in. But on the bright side I have recently recovered from a trauma to my pelvis, and years of therapy! It will always have some issues and there is a fine line not to cross with work outs. However, I (with nutrition) am able to work out. After about a month I finally gained enough strength to attempt bike riding... so that's my latest and greatest I got a new bike Friday! I cried while checking out.... three years ago I just knew I would never be able to do things like ride a bike ever again. I knew I'd never be active, and my physical therapist never inclined I would either... and believe me I kept asking in hopes they'd change there minds. So I put it in God's hands and kept trying. Kept pushing! Now look I have so much wrong with me but I am gaining strength... I know God has timing for me and plans. So, I will push through the trial and bask in the victories of my life. Xoxox-Chelle