Saturday, August 30, 2014

Go Vs. Not to go

To go, or not to go. That is the question haha...
I just got a text from my sister asking if I wanted to go to Wal-Mart with her.
The old me would of said yes and never thought twice. Then new me has to go into a whole review and weight the pros and the cons... I fight in my head if it is worth it, if I will feel good, if I will have fun, if I will be too tired, if  I will get there then be ill.... the list goes on and on...And It is hard, it's a battle  that unfortunately comes with the territory. It never gets easier and I always am left with a feeling of guilt or sad I missed out when (on nights like tonight) when I weigh a big fat NO. Then if I go I am nervous or I tend to get there and I am just miserable... now the odds sometimes play in my favor and I win a victorious good healthyish time.
Oh, in the life of a chronically ill person.
this is my thinking face haha...


I am trying this whole thing where when I am upset or frustrated I listen to hymns...
it has a 98% successful outcome!
He is there!
 

Thursday, August 28, 2014

Journal Entry...Braver??

Today I post my journal entry from yesterday. Am I getting stronger? Braver? I don't exactly know what to call it. I think I am finally just taking a breath of fresh air and "letting go" of what I can simply not control, no matter how bad I want to be in control of this
 
August 27, 2014
It's time, time to accept this life. This is my new life. There is no going back...Just forward now. Embrace the special life you have. Not as planned. Lots of hurdles to jump over. Some more pain to endure. But this is my life and I will NOT let a stupid condition take me down. I have to treat it. I have to push it. I have to medicate it.(referencing to my body) But God will never give me more than I can handle. I can do this. I have Postural Orthostatic Tachycardia Syndrome/Dysautonomia and a slew of other conditions. But that is not who I am. Yes, it will always be a part of me but I can continue. Keep on keeping on.
P.S. I can't keep fighting with myself, I will never win.
 
 

Wednesday, August 27, 2014

Spasming Stomach, What You Gonna Do.


I am very sick, I have a very unhappy stomach... saw my new Primary Care Physician and she knew what POTS/Dysautonomia was...WHAT! she couldn't remember every little thing about it but knew the basics (hey I don't know who can remember all that, I can't!) She was kind to me too :) My stomach is being hyperactive and spasming very badly. This is occurring from my Dysautonomia. GRR! So, everything I put in my stomach is just going to come up until we get it under control with medication. I can not do anything for pain except antispasmodic medications (if you have had spasms you know pain medication doesn't even touch it)  (which I knew because it happens very often...) I stopped eating yesterday and basically drinking due to it, I thought I was going to get reamed...no she was so kind and put me on an ice chip/ popsicle diet! (to avoid vomiting) because if there is one thing really bad for POTS it would be vomiting... makes you very dehydrated. She told me I knew my body!!! way cool! Waiting to go to motility clinic September 8th! can't get in any sooner. I have been waiting for this appointment all summer!! I think I have a glimmer of hope, my stomach may be headed or in not very good shape but God has a plan for me, I can handle this...

P.S This is what my spasming stomach feels like/symptoms.... it hurts bad! like over 10 on the pain scale! it is bloated, you will be very nauseated, vomiting, putting food or even drinking will make the pain worse and you will probably just throw it up anyways, it hurts to move, laying down feels best, it will feel like it is moving and gurgling a lot even though it is empty (because it is moving too much), it will hurt to even touch it very lightly with your finger. Very Painful! Go to your Doctor if you feel like this because it could be something more serious and I am not a doctor... But that is what my spasms are always like...
I sipped a sprite, cranberry, vanilla Slush from sonic instead...much tastier :) I know Halloween is coming soon so this picture about fits in there lol #whatsickpeoplelooklike.

Monday, August 25, 2014

Personal feelings

As you all know, the biggest trial in my life thus far & currently, has been my ill health. I started being ill the very first few weeks of my Freshman year of High school. Gradually each year since I have gotten worse and worse. With symptoms accumulating and multiple diagnosis, some right/some wrong. It has held for me a long journey...but this past May I found the culprit to my ill non describable baffling non believable health issues. It is called Postural Orthostatic Tachycardia Syndrome/dysautonomia. I will tell you about it but just the very basics because we could be here for years going over symptoms, treatments, ect.... basically my blood volume is low due to my kidneys kicking out all my salt and then my heart rate well it is super duper high like 110s doing nothing...when I stand or sit this gets worse around 135-160bpm, then my blood pressure will drop upon standing as well  because my autonomic nervous system is not working right. it effects my whole body from head to toe. (lately my tummy and kidneys are really reeking havoc)It has taken nearly everything out of me. But one thing It has given me was a very strong testimony that Jesus Christ is my savior and God My Father in Heaven... I am a Latter Day Saint of Jesus Christ, I believe in God, I believe in Jesus Christ I believe Jesus gave his life for us, I believe in the Holy Ghosts, I believe in the preexistence, I believe in the resurrection, I believe in goodness and light, I believe in angels here on earth and in heaven, I believe in eternity, I believe in Joseph Smith and the Book of Mormon as well as all of the other wonderful prophets that have guided and continue to guide us in life <3 I also believe in prayer and that having faith is a very important key in life. I believe in choosing the right. I have had many blessings in this life as we all have... some of those blessings have been in disguise and let me tell you I didn't even recognize them until I looked back... Trails are tough but they let us grow, and test our faith. Heartaches and trials hurt, but they will bring beautiful blessings.... I very much know this. What do I also know? Sometimes we really have to be paying attention to seek out the blessings. We could so easily let life pass us by not paying attention to the Lord, not seeking truths... but what would happen?? Personally, I ponder this question and I think, "wow!" I would be very lonely, I would be honestly I am unsure if I would be alive enduring so much sickness without God's healings and tender mercies. I would be angry and bitter always... I probably wouldn't care to help others...  I'd probably just have given up. Quit...ugh can I just say thinking about what I could of been without the lord is scary to me... so Dark and hopeless my world would be. Instead I choose to endure because I know God is there and I am never alone. 
           Everyone has there human moments, and rightfully so... I get mad at God on occasion, I get sad that this could happen to me, I question things in life, I feels sorry for my sick self, I sometimes get so worked up I throw a temper tantrum and say, "why me!?" Even though those negative hard times have occurred... My Heavenly Father has been patient with me, for me... He waits...waits until I am quiet enough and sends his beautiful tender mercies to me... no matter how mad, or sad, or "stupid" I behaved. And every time I feel ashamed but I do have a strong understanding that no one knows me better ... he sees what I am going through and he as an ever loving father is forgiving and willing to wrap his love around me always...he loves us ALL, no matter what. He knows I am imperfect... for if I was perfect I would not be here now would I?? My Heavenly Father is forgiving, to me, to you, to us....
         Though the stars do not always shine brightly my faith sure will! God is there; in the air on a crisp autumn day where the colorful leaves lie, in the coziness of the cuddling up with hot chocolate and a good book in the middle of a winter storm, in the reborn peaceful smell of grass perking up in spring, in the bright beautiful sunshine and green leafs in the summer. God is with us in every season of life, sunshine, rain, wind, storms...He is our anchor, he will hold us down with grace and teach us humility...He also is our crane and lifts us up when we can no longer stand, or fight the waves of life. There is no one like God and not one other alike me and you. we all are here for a reason. We all have special purposes. One thing I am trying to learn is god is helping me help others. Being ill is not a curse, it is in fact a mighty blessing... it just takes a lot of balancing. Now I need to find where I am pick up my feet, brush myself off, dry my eyes, and continue forward with the Lord by my side!

Saturday, August 23, 2014

Chelle Shares: Living with Bob (Dysautonomia) blog Post Today, Tommorrow, and Yesterday: The SymptomsThey Dont Tell You About

I agree fully.... it's the things listed here our doctors never tell us about, never even talk about really... the worst symptoms of all ....Postural Orthostatic Tachycardia Syndrome Dysautonomia.http://bobisdysautonomia.blogspot.com/
MY HEART FULLY GOES OUT TO ANYONE WITH POTS/DYSAUTONOMIA OR ANY MEDICAL ILLNESS. MAY WE ALL FIND PEACE WITH OUR SYMPTOMS AND LIFES....XOXO-Chelle

This is My POTS Look



 
This is my haven't slept and have been pretty sick for 32ish hours,
but hey who's counting!
These days are rough but God somehow, some ways gives me continuously strength to get through this trial. Strength to be sick practically all the time.
Strength to go out in public looking 'fine' and being a total mess inside, some days I cry inside even though I may look perfectly fine...other days I cry aloud and look well (to me) pathetic. I know tears are good, when we cry we let go of bad things.
I wish I never had to cry again but I know I am a 21 year old female living a lifetime of Postural Orthostatic Tachycardia Syndrome Dysautonomia... the tears are bound to happen.
Everyone cries. Everyone has trials, & hurt in there life...
The other day a dear friend was dealing with a hard time in her life,
She mentioned to me "you probably think I am just a big baby. You have so much to deal with."
My reply, "No of course not. We all have trials & they are not all the same but I think we all feel the same amount of heartaches in life...it always hurts, a heartache, & in the scriptures it does say that mans heart will fail them..."
Being sick, I am not sure if I will ever find it okay or normal.
But I hope one day it becomes easier.
One day all the symptoms magically disappear.
I have hope.
But I know too I have a plan eternal and I have already seen the hardships of illness have brought me some very mighty blessings & knowledge.
I do not know what tomorrow will bring, nor next week, nor next year...
But I know Lord, you will always be at my side in good times and bad times, you are there. There are bigger reasons to my constant illness than I am sure I could ever imagine.
Some people would say I was "cursed" believe me I have those days where nothing is fair, and I want to figure out what I did so wrong to deserve this...nothing... I did nothing wrong
God loves us all the same and it took me a long time to realize God does not punish us. Never EVER! He is our life line of hope and goodness.
He gives us the gift of his son Jesus Christ to guide and comfort us.
We are so lucky to be here on this earth. Living a life to eternity. But bottom line we are all going through something at sometime. We are weight lifting the lessons of life. It will hurt before it gets better, or easier. We will be sore before we can lift the heavy weights of life...but when we do we will be so much stronger then before.
And that no one can ever take away! xoxo-Chelle

Friday, August 22, 2014

A Decent Day

Today I had a decent day... went to our property to see my dad (he was getting the horse ready to go roping) a regular... I just love how pretty and green and full of life everything is.
This is what happens when your dad takes your picture I have a whole lot of these... closed eyes
....
I took a selfie and I couldn't see the screen on my phone so I got an okay picture! even with the crookedness haha. I am just happy to document a decent day. Thankful for all my blessings <3-Chelle

Thursday, August 21, 2014

You might be chroniaclly ill if you can play 'I Spy' with all your medical junk!

You may be Chronically ill if.....
Your night stand is a constant mess of medical things/ remedies ...
( There is SO much stuff on my night stand!! Lets play I spy... I spy with my little eye... an SIJ Brace, eye drops, measuring mixers for electrolytes/medications, lotion, a maker (because I am forgetful), My lamp, an abdominal binder, & last but not least a smidge of my humidifier...)
I had to post this picture I took yesterday, I actually felt good enough to do my make up and get all dolled up. Which always makes my heart feel happier... it's been a real struggle these past few weeks, reality of life with a rare disease is setting in... But I take great comfort in my knowledge that god has an eternal plan for me and I am going to quote a few of my favorite scripture quotes that help me get through... if you are having a hard time your Heavenly father knows, he hears you, cling unto him & I promise he will never fail you <3 xoxo -Chelle.
P.S. Does anyone else have this problem??? I can never keep my night stand free of all my medical "junk".

 Favorite Scripture quote #1 "Be patient in afflictions, for thou shalt have many; but endure them for lo, I am with thee, even unto the end of thy days." D&C:
 
Favorite Scripture quote #2 "I will be on your right hand and on y:our left, and my spirit shall be in your hearts, and mine angels round about you to bear you up." D&C 84:88
 
  Favorite Scripture quote # 3 "For there is hope of a tree, if it be cut down, that it will sprout again, & that the tender branch thereof will not cease." Job 14:7

Wednesday, August 20, 2014

Blessed to be blessed.

 
Though times are tough, I am blessed. I may have more bad days than good,
But in those bad days, I learn A LOT!
I meet new people, have crazy experiences with being ill.
being ill has taken a lot from me practically every earthly thing besides my family and friends.
Being ill has given me tons more then it could ever take,
I may fight through my days and battle a disease that is simply rough
but I know myself and I know I am indeed a fighter and I will fight until the time comes
that I will have a healthy body up in heaven.
I may have a lot to handle and deal with but God gave me the tools to handle this
He made me have that drive inside, the fight. To never get up.
I am blessed.

Tuesday, August 19, 2014

24 or so hours of hardship


The past 24 hours have been one of the hardest 24 hours I have ever experienced in life... I don't want to go into the details but I was just in pure misery. I prayed and cried and prayed and begged and cried some more. But through this lonely time I have seen so much support and the even greater part is a blessing came from it.. I just met a friend close to my age and she too has the problems I have even the ones that other POTS patients don't necessarily have! I have never met another with pelvic floor problems. She has been so kind to me today emailing me, checking how I am hanging in there God sent me the biggest blessing today, I doubt this young lady knows how touching this is and how much I needed a good friend in this level of sickness.... I am one blessed person and I know God placed her in my life! I hope I can be a good supportive friend back. Sometimes the worst awful trials that seem endless, dark, devastating, and more scary then ever bring the biggest brightest blessings into our lifes! xoxo-Chelle.

Monday, August 18, 2014

Looking for anti- hystamine foods...especially treats!

If you are looking for an anti mast cell treat or yummy recipe check out this rad chef!!http://thelowhistaminechef.wazala.com//the-low-histamine-dessert-book/?afg2_page_id=2
happy healings! lots of love-Chelle

Catch Up.

It may seem darkness is never ending in trying times,
The storm won't last forever
I went to see my neurologist at Mayo last Thursday, I was super nervous. He ended up being really good though... haha he left us waiting for 2 hours because he forgot me and got lost in the emg lab haha (I truly didn't care, I will wait a year for a good doctor... everyone is human) bad news is I am at the end of my treatment line and the heat makes all POTS dysautonomia patient's symptoms worse (and mast cell activation disorder) so the good news is in a month or so when the weather cools I should feel some form of relief! He upped a medication seems to be helping but hard to tell because the night before last I threw up...so I am sure some of that came up. I hate just vomiting it is one  of the worst things on this earth, the weird part was I didn't even have a stomach ache just nausea and bam! ... I live with a constant nausea really. When I eat food it feels like I swallowed razor blades. I will see the may motility clinic next month so praying they can make me better! God has a plan for me. I am hoping to live a fulfilling life even sickly, I just keep thinking of all the things I want in life... sometimes I use that energy for a drive to push myself harder and other times it is a total weak spot. That's part of being sick.... I am starting to run into situations that are hard for me like going out into public with my symptoms, I can't hide them, it embarrasses me and I feel so weak... Then another part of me gets super mad or sad and jealous of all the healthy people around me. Don't they know there are sick people in this world wanting to be healthy like them?! No, of course not how could they know... it is not their faults ever, I am sure one day it won't be so frustrating... I will wait for that day. I know I am not alone. My father in heaven... Yeah he is always there!-chelle

Wednesday, August 13, 2014

Doctor Jitters...

Well, I should be fast asleep right now but instead I am up with a case of the nerves. and pain lots of pain everywhere (sigh)... I go to my Neurologist at Mayo in the A.M. Which means drive for 3-4 hours which is hard on my POTsie body... I just hope all goes well!! My tummy is horrid!! (along with a million other symptoms) I also get to go to physical therapy yayy!! Praying for peace for my turmoiled body... God is with me I can feel it, things might not go my way but there is always a reason! Repeating my mantra... the worst trials bring the biggest blessings! xoxo-Chelle.

Today

Today I awaken, I crawl out of bed to take the dog out. I feel the pain everywhere. you know the usual. I have to wait a few seconds to let my blood pressure adjust. My heart rate heightens higher and higher. I get the leash and put it on the dog. Dizzy again, except this time I can not see for a few seconds. I go out the door in my pajamas. Come back in, take the least off. whoa, got dizzy. I walk into the kitchen to take my morning pill concoction. Decipher if I should be drinking water or and electrolyte. Darn, must have electrolytes (again), I miss drinking water. Take a deep breath, look around for something to eat. Must be high is sodium, I slept in... I need salt. I find a small can of cinnamon rolls 400mg sodium a roll, that shall do. I feel guilt sink in of such an unhealthy choice. Remind myself I need a huge salt intake in the morning. Preheat stove, throw the cinnamon rolls in the oven. My forehead hurts a lot! Look in the mirror, I have a scowl on my face. My muscles are stuck from the previous night of sleeping in pain. I sit and eat and have a good moment. Next I look at the task list for I know there are things to be done. If I don't write my tasks down I will forget. I start the task of packing for my 4 hour trip to Mayo. I am already wiped out. I look over my support hose to see if there are any tares or runs, sort them out and pack the good ones away in the suitcase. Ugh I need to rest... I rest a few minutes and get back up. Planning what to wear the next few days. Nope, can't wear that it will be too hot. mmhm those shorts are too uncomfortable. I finally decide on a few pieces and make one phone call. I hang up. I am done. I have a list full of things to do, but the fatigue is so bad I can barely move or think. the pain is deep into my muscles and bones. I can feel my heart rate beating fast, faster. take more salt pills. lay down and remind myself tomorrows another day. Get back up. Time to get those tasks done. hand go weak almost all the way numb. I can do this. I can do this.

Monday, August 11, 2014

Hearts of Hurt, Release and Move Forward.

My heart hurts tonight, mentally and physically. That's the strange thing about Postural Orthostatic Tachycardia Syndrome Dysautonomia. My heart hurts legitly when I am worked up even when I am not worked up it just likes to hurt sharply. Tonight I carry a heavy burden that simply comes with the territory of being sick, we hurt all day and some days more then others we struggle through the night hours in our pain... our minds wonder about treatments, medications, will I need surgery, am I going to even have any treatment for this, & the dreaded what am I suppose to do?...Sometimes when you are chronically ill especially with and invisible illness... it is super easy for most people to write you off as fine or dramatic. But sometimes the ones we love forget and sometimes they are blind to the mask on the outside as well. They don' t mean to, it just happens. Sometimes what follows this is they can't help you at the end of the day get well. They can't cure you. So there can be another frustration from a loving family member. Being sick effects them as well maybe even sometimes more then  we realize...Sometimes, they are scared too! There are times upon diagnoses that we have to sit back and start accepting our new life. Accept that things may or may not change for the better, accept that we now have permanent obstacles to face. Mountains to climb. There will always be a part of me grasping onto the before sick me but I know if I don't let her go permanently she is going to drag me down and take all my happiness away. Even my gift of life. She can taunt me that's okay. It's okay to miss her for a moment but I must do what I need & that my friends is to move on, move forward, except the non so perfect happiness. Even if that bothers somebody else, even if that other person is not ready to let go...With the knowledge in our hearts that we can have happiness always in any dark corner of life through our redeemer Jesus Christ. Amen. - Chelle

Crack

Where the arrow is pointing, that is where my pelvis decided to move apart  and hurt!
My latest and greatest. Last night I was moving on my bed like to reach my remote and my pelvis (I think dislocated but went backish in) the only way to explain it is it felt like one of those things you use to crack open crab legs, well that's what felt like happened to my pelvis! Yikes! woke up still hurting but we got it back into place fingers crossed! Now my whole day is ruined again and I am taking it easy! and in more pain!! My biggest issue with the whole thing is my progress. I was making progress on getting stronger and I worry this will get in the way :( They lord will provide! he always does.... I think he is really teaching me patients through all this! He must love me an awful lot to allow these situations, so I can learn and grow!! I hope you are well xoxo-Chelle
 
 

Friday, August 8, 2014

The Chains of Faith that Make Our Life a Master Piece

Today I was cleaning out my little wicker basket with all my blankets and purses in it. (got to store them somewhere) As I was cleaning it out I found some yarn, I have no clue why I bought this yarn or why I kept it but I did... I am not a person who likes to waste things, which led to my conclusion to YouTube how to crochet and I was going to crochet something....( I am truly convinced you can learn anything on YouTube) the yarn is too hideously bright and multicolored so I was like hmmm I will attempt making a blanket and we will see what happens... I am on my 3rd row just barley and I am not sure if I am doing well or not! I do like it though I find my mind wondering off as I craft every stitch. I think about life, my life, God, My Purpose here. It may be something I stick to but only time will tell... it is rough on my shaky little hands. I have to stop or use my fingers because I tremor a little. I don't want to not do things because of my illness, I want to try anyways even if it means trying ten times harder! I know my Heavenly Father has blessed me with a never ending will to fight and try. I had a very rough week and my heart was just on a total time out, I barley prayed, I stopped reading my scriptures nightly.... I regret it 100% once the negative feelings and fears worked their way out, I found myself missing the very best thing in my life, My Heavenly Father, My redeemer. I know they never left my side.... I am blessed, & loved and no matter what I will always be. What a comfort to know this! I have started my habits back up of regularly praying and reading scriptures etc.. I think my prayers are even stronger and so is my faith!  I feel closer to God than before.In the darkest hard times if life, we grow, we learn, we conquer, the biggest blessings come from the hardest trials in life! xoxo- Chelle

Thursday, August 7, 2014

Me, A Mountain Top, & A Pair of High Heels

I had an wonderful day and spent over an hour on pinterest, dreaming of having a house one day and of course filling it with wonderful d├ęcor! For the first time in maybe even years I actually allowed myself to DREAM.... dream of a life, even as  I was dreaming, something was different about these new visions stored in my head. I didn't have the perfect house, nor the perfect life. I even envisioned myself as chronically ill. I have never done that before. Never ever have I accepted myself as a chronically ill person. I learned something in this hour... life doesn't have to be perfect for me to have happiness. My body doesn't have to be perfect or normal to feel alive inside. moping will always occur (which we all know I will tend to do at times, sorry when you are chronically ill, this is just part of the territory. I know I will always to compare myself to the little thriving girl I was before I was sickly. My heart just yearns for her.) but I can still fly as high as the sky will let me! Faith and a little more patience then I ever thought possible and that mountain my friends, I will be on top with a huge flag. The words will read, "not only survived but conquered." I will also be wearing stiletto heels, they keep me closer to heaven :) speaking of heels I got a new pair I gifted to myself yesterday....I have the hardest time finding heels that fit with my child sized feet, so I just had to get them.


Wednesday, August 6, 2014

Wow!

This past week has been hard for me, I had worked myself up to extremely scared and worried about my life and what it will be with all these medical issues. I felt like I had soo many emotions that I just kinda checked out for a few days. I just brew in my emotions and I am not sure if it was healthy for me or not but I needed it. last night I shared on my Facebook page as I posted here a fundraiser called clicking my heels for dysautonomia. I wrote on my Facebook post the complications, little knowledge, and research for this disease I have. I didn't have any response from anyone for hours (which was a little embarrassing and offensive) it was the 1st time I had ever said I have dysautonomia on my Facebook page. Then a classmate I went to high school with was so kind as to mention her friends name on my post and then that girl sent me a friend request. I thought to myself, "is this possible, to know someone with POTS?" I got super excited and started emailing her, I was just so curious... I had felt alone all week and here a total stranger was making me feel like someone was there. AND someone who actually understood!!! I felt the answer to my prayers had come...then she added my to a support group!! I have to say it was good to see others with my issues, unfortunetly some where much worse. It has made my heart feel full since. It is almost like I found a click where I belong in this world. I am so thankful for kind hearted people...isn't it amazing what just one single person can do for someone...next time you feel like nah I won't say something to that person they'll be fine. DO IT SAY SOMETHING TO THEM!! God hears me, he hears you. Lots of Love! well wishes to you -Chelle

Tuesday, August 5, 2014

Wanna Donate for Chelle?

Wanna donate for research for what I have??? This Gal is pretty awesome! Her name is Michelle to what a coincidence! I love her blog and her gorgeous RED heels! She is trying to raise money for Dysautonomia Research! Check it out! Oh and When I asked if you wanted to donate to Chelle... I meant both of us (wink, wink) but I am serious PLEASE :) xoxo- Chelle
https://give.everydayhero.com/au/clicking-my-heels-for-dysautonomia

Dysautonomia Today I'm a Daisy.avi





I do not drink alcohol ( I believe my body is a temple, and alcohol is no good for me) that being said I do not look down upon any one who drinks. My own family members drink. I can't eat chocolate right now due to mast cell. I am not a mother. But other than that....this really sums up things! I am not doing well this week. I probably won't be posting much but I will be hopefully back on track soon! I still will be sharing any helpful thing I find. Being sick is hard right now. But I know one day it will be okay. Blessed be you all! xoxo Chelle