Tuesday, April 29, 2014

Nuun Electrolite tablets: My Opinion...

YES! I highly suggest these!! They come in a tube...You just pop one of these little babies into a 16 or so oz water and wait 2 min and it is good to go... (kinda like airborne)  I just bought these like an hour ago it cost $6 and something cents... these are the lemon lime kind...I like it... I think they have mixed berry or something flavored ones too..
NUUN NUTRITION FACTS:(serving 1 tablet)
calories 8
total fat 0
sodium 359mg
potassium 101mg
total carb 1g
Sugar 0
protein 0
vitamin C 38mg
Riboflavin 5 mg
calcium 13mg
magnesium 25mg

bon voyage off to Mayo...

Okay everyone today I am packing and preparing for my next 2 days I will be spending at Mayo Clinic... tests and consults with specialists...So forgive me for not blogging probably the rest of the week... unless I find Wi-Fi and get a moment to get on here... I will do an update when I return home for sure! I have to have salty snacks on hand and I actually carry salt packets in my purse because you don't want to find yourself in a situation where you need salt and don't have it sort of like how a diabetic needs sugar... So I have made these bags of salty goodness haha and I also have my information for Mayo (medical records, medication list, log of salt and fluids and symptoms... it is a serious job and I am tired!

Today I saw my Primary care Doctor, informed her of the pre diagnosis of Postural Orthostatic Tachycardia Syndrome... She had a student in with her (which I didn't mind) ... She was not very believing and you know how I know??? She made a comment several times I see a psychiatrist and am seeking counseling (which is true) but that is NOT what is wrong with me! My symptoms are all over and crazy yes but I AM NOT...  I have also learned the diagnosis of Panic Disorder is more then likely a misdiagnosis and most POTS patients get misdiagnosed with an anxiety disorder before diagnosis of POTS. (Which is the proper diagnosis) my Psychiatrist is even on board with me... I know I do not have Panic Disorder, I have done a lot of studying and paying attention to my body and what it is telling me... Every "panic attack" occurs when I stand up and they are very random... or in the car which is idk why my body must not like being in a car very long sitting?? okay but I have been very paying attention and have come to the conclusion of those "anxiety attacks" are not anxiety attacks they are a result of my heart rate sky rocketing and my blood pressure dropping to the floor...I just wish doctors wouldn't treat me like I am just some crazy ... I know I am not and I guess it is time to gain some thicker skin and I probably will be looking for a new primary care doctor who is on board and doesn't try to psych. evaluate every thing I do... hundreds of docs have done this to me... why? good question if you are a doctor or becoming one ... please just LISTEN to your patient and don't automatically jump to conclusions...
p.s. I do not think I never have anxiety I simply know I do not have an anxiety disorder.

this is what I always think when doctors are dismissive to me..."Do you think I REALLY want to be this way? Do you think I like wasting time in doctors offices let alone the financial end of it and oh I can't work and it's all I want to do ... not having any life, no friends really that you get to see and Mom and Dad taking care of you at 21... uh no! I would much rather be healthy and live my life not making special snacks as you see below, not counting my sodium every time I eat, not counting fluid intake, no crazy ER visits, Hospital stays (that seem pointless) not constantly be making appointments and going all over the state for help, not monitoring medication all day long.NO! I would love to just be healthy even healthyish would be great!" I dang sure don't do this for fun...

Monday, April 28, 2014

Does Your Heart Ever Just Feel Weepy?

It's a known fact that people with chronic illnesses go through the cycle of grief over and over.... Tonight I am just so overwhelmed by all these dysautonomia symptoms and learning of it all .... this has lead to me realizing I have certain symptoms I didn't even know I had because I thought everyone did that... like sometimes I can hear my eyes blink and sometimes I get this weird clicking when I talk... I just am down tonight... all I do know is this is where I have to rely on my faith to get me through... I can be healed... lots of prayers... I hope you are having a better night then me and if you are weepy... Do NOT every feel bad about it! You deserve the right to feel how ever you may be feeling <3 Don't forget you are strong! You are in my prayers! lots of love, xoxo-Chelle

Hot and Cold

It's 75 degrees in the cooler part of my house... I have the oven on and am in the sunshine through the window.... with a jacket on and leggings.... it's the first time I have been cold in probably a month. I have suffered from being SO hot! and hot flashes and now I am back to cold haha it's a never ending battle....
hope you are having a wonderful day... prayers go out to any afflicted in the weekend storms!

My Symptoms Part 1

HI everyone! I am posting this here for others to see because A. this is exactly how I feel and I have such a hard time describing it to doctors B. So I can easily show my doctor this by logging into my blog! #educate If you have a ton of "crazy" symptoms never give up look at all these symptoms that most doctors truly blow off... they are real :) # Dysautonomia #POTS

Is it POTS or Dysautonomia?

I am so happy to have found this! I too had confusion with this....

How Much Sodium In Pickle Juice?

There is roughly 1,190mg of sodium (salt) in about a half jar of pickle juice! I spent forever trying to find the answer to this! If you are on a hi salt diet pickles and their juice are a simple way to get it in... and it has probiotics. (this I learned while trying to find the answer to how much sodium)

Endometriosis: Dr. Seckin to Dr. Drew... Have you heard?

I am sure many of you have heard the comments that Dr. Drew made last Friday... Those comments were very wrong, as I am sure any woman with Endometriosis already knows. I am a huge Dr. Seckin fan! I am proud of how he has handled the situation with grace and no putting down. I hope Dr. Drew can see the errors of his ways... Endometriosis is not in any women's head EVER! and if someone tells you your aliments are in your head do NOT believe them. For you know your body way better than anyone else ever can! You are amazing and strong no matter what disease or diseases you may face in this life! I pray for every single person in this world suffering from any aliment. xoxo -Chelle

The link below is a short video on youtube Dr. Seckin tastefully made to straighten out the misinformation of Endometriosis...


This link is a picture of Endometriosis....(with some explanation) these lesions are not psychological.


Saturday, April 26, 2014

This is What's in My Heart Every Day... It's What I Know

"You were tutored by him before you came into this life. He helped you understand and accept that you would have trials, tests, and opportunities perfectly chosen just for you. You learned that our father had a plan of happiness to get you safely through these trials and that you would help and bring others safely through theirs. This plan is marked by covenants with god."-Henry B Eyring

I LOVE this! This very thing is what keeps me going everyday... it's what I am made of. It's why I have chosen to blog to help others out somehow through my crazy journey because I knew their were others out their struggling too... and I truly hope this helps  someone even just one person and I will have done my job! being Sick is soo complicated and such a hard thing to go through, but I know it has also given me many blessings that I'd never trade one bad day for the blessings I have received and the knowledge of better understanding of this life and what it is truly all about. I am so thankful for my opportunities that have came from being sick. God Loves each and everyone of us, we all have a plan eternal.

Friday, April 25, 2014

Because We All Need A Laugh!

I just saw this and thought it was hilarious... I am going to tell you a secret. So tonight you all are lucky! I watched this movie 'Ms. Congeniality' several times before I even noticed that she answered the question wrong...haha If you haven't seen it, it is a must see!

                                       KISS FM Phoenix's Photo off the Facebook*

Medi Upate, Last Night was Awful!

Medi Update: Last night was a close second to the previous night I recently had in the hospital. I drank so much water I was sick or that's what I thought made me nauseas. Then I just went down hill the whole night until I fell asleep.(which felt like it took ten years) I wrote down sloppily so I wouldn't forget...keep in mind these things are very hard to explain.... Had a spell heart is racing. Felt Very Dizzy. Feel no control over my body (like i'm not quiet plugged in) Chest pains. Heahache. Eyes feel super weird. I tend to feel very scared but hey who wouldn't! Then Any noise at all would send electrical impulses of pain through my whole body.... I remember there being more and me thinking I would remember just hold still because moving was awful too... I forgot, of course. I hate that this happens. Still not on my game today if I get up I can't see for a few moments. I hate that! achy today my poor body is so ready for some serious help with whatever this may be POTS or not. I think my body is done with all of it. And I don't blame it one bit!

Thursday, April 24, 2014

Changing this Blog's Looks!

I had to change up my blog today because next week I seriously have an appointment or a million a day... So I probably won't have time to do this... I hope you guys like it, I just really wanted to do a black and white blog! I know it's not the most summer looking but I like it!
SO SUPRISE IT'S CHANGED UP EARLY!! :) (I try to change it up every month)
  Have a good day! xoxo -Chelle

The Importance of Medicine Safety

I think this post is petty self explanatory. Medicine should be something we all practice safety with. As you all know because I posted about it.. a while back I accidently took 2 pills of the same thing that I would regularly have taken just one of a day. I was very blessed! As it was not harmful to me and I had no real problems, minus one of the biggest scares of my life...being home alone and taking 2 pills I knew I shouldn't have taken... This scared me soo much but I told my self, "it was okay and this was bound to happen" and "just be happy you were okay, be more careful next time"... I have been more careful however suffering from memory issues. I have the worst memory right now and my thought process is  scrambled eggs. So the other night when I took my night time medication and had no remembrance of what I took five seconds later. I knew it was time to start doing something different because no matter what age or any factor you can think of, if you are taking medication and not knowing for sure what you took or getting things mixed up, it is time for a change. Prior to ALL the medication I have been on back when I just had a weekly pill container and I could fit all my pills into a small weekly pill calendar . Plus I was only taking Medication once a day... However with all my extra medication since then I could not fit it all in and quit using it... I have found this huge pill weekly calendar with morning, noon, eve ,& bed for each day of the week... However I know it will be hard to carry this huge thing in my purse lol. I know it will serve its purpose and keep me safe, and the worry will definitely be lessened for me.
I highly suggest one of these or one similar to anyone who takes medication!
**These are not child safe. IF you are around/living with children keep this in mind! Put it up high or where a child can not reach it***

Wednesday, April 23, 2014

Want to know what POTS is or Dysautonomia!??

Here is  a link to dysautonomia International to find more info click this link!!!

Birthday Celebrating

This is the darling birthday gift my favorite cousin bought me! It's the cutest bag ever! I LOVE leopard print! WE celebrated our birthdays today because we haven't had a chance to see each other for  months! We just kept missing each other.... her b-day was in February and mine in January! it doesn't matter when all that matters is that you do celebrate:) Should of took pictures but I think we were having too much fun!! (haha I love how it looks like I am eating the bow haha. I am not eating the bow, just excited*)

feeling better today knock on wood... pain is soo much better today, a little achy, still fatigued and a little woozy and very fogy thinking, either a infection or a bad lichen planus flare but I am a fighter so, fight on I will...

As the evening progresses I am very fatigued and I have more pain it seems every minute adds to the pain level...and now my face and ears are bright red swollen/burning and hot due to blood pulling  grr...

Tuesday, April 22, 2014

Strength in Times of doubt

tonight  was a struggle... While reading my scripture I once again encountered another "sticky Note" moment when I feel a sentence or a verse where simply put in my reading materials just for me... tonight I struggle with fears of the unknown and doubt. I always struggle with these things but I know deep down I am going to be okay and when I forget this God always finds a way to reboot that low battery of hope and I just feel certain that I am truly  going to be okay. I know it's my Father in Heaven telling me so. The simple few words I read: "Lift up your heart, and be glad; and look."-Moses 7:44... to me the lord was telling me hey snap out of it look around at what is going on and see the truth don't let temptations of bad thoughts tear you down. It also reminded me to be strong through him and if I lean upon him and soften my heart I will have all I need!

Too Much Sleep, Not Enought Sleep

Do you sleep a lot? I mean like a lot, a lot! I have since I have been sick ... sometimes I sleep for more than 12 hrs. a day! I never try to over sleep but I think sick bodies just need more rest ... they work so hard all the time... plus you either are sleeping too much or not at all... at least that's my experience... I am really trying to sleep regular but it is very hard!! if you are ill you probably know what I am talking about... I always feel guilty too when I oversleep... I'm always telling myself how bad that is and then I feel guilty that I have wasted a part of my day... So if you experience this you are not alone. Sleep turns into a tricky thing when you are sick.

Medi Update: I upped my nortryptilyne (nerve pain med) and we are seeing if it helps with my monstrous pain... today I think so far I feel it is working... fingers crossed...and toes too! Working on getting a MRI record! For My gastroenterology consult, So complicated sometimes to get records... People who are sick have their own full time jobs that pay nothing haha... we are receptionists, researchers, monitor medicine, and a billion other things! haha

Monday, April 21, 2014

Some days and how i get through them all..... I am LDS

I feel strongly that I should write about how I am coping and feeling right now with all these crazy medical twists and turns that I have absolute no control over, yet it has full control over me and my life. I sum it up in Days. Some days are good. Some days are bad. Some days are okay. Some days are sad. Some days are Maddening. Some days are frustrating. Some days are depressed. Some days are a mess. Some days I can't stand. Some days are full of hope. Some days I just don't. Some days I am strong... But all the other days tag along. Someway somehow I get through. You want to know how I get through? 100% because of my Savior Jesus Christ, God, & the holy Ghost. If I had not that I would have nothing in this life. My life is a mess but I can guarantee you it is a gift such a marvelous gift I probably couldn't even know how much of one it is here... I know it is one, and I try my very hardest to cherish it. Sometimes though it's tough and hard, That's part of being ill. My Savior is there with me every step of the way. He loves me more then I can comprehend to you. He loves each and every one of us that very same way!! It's a wonderful thing and I wish everyone could see things how I see them after going through all these hardships. Hardships are trials and they have changed me very much. God has given me the strength to get through these trials and continuously does and will. I know I have a plan eternal. We all do! He has blessed me to be able to get through being sick and faith is what I rely on. None of this makes me perfect but I choose to lean on my Lord. He is there, He will always be there. I never have to worry about being alone when I am sad or confused. Life is rough for everyone we all want that perfect fairy tale ending but No one truly gets it here... I think our fairy tale endings are our eternal plans we will get to live in the next life. That's our fairy tale.... eternity. So as things are hard here and I so often think I wish I could just quit. Even though that is never an option. I know my redeemer is helping me become stronger and better than I could ever do on my own... he is preparing me for my beautiful eternal plan and that's how I keep going. Sickness is very rough! I think for sure one of the roughest things to experience in life.... but keep reminding yourself it's temporary in the big scheme of things. Eternity is going to come.... So these days, months, or years are just stepping stones to a beautiful start. That's how I get through these awful days here and now. I am Mormon. I am LDS. I am blessed, & so are you!

My Monday

Hoping you had a Very Happy Easter!! I sure did! Very thankful for my Redeemer<3 Spent it with the family, me and my pretty sister. We both bought my mom the exact flower arrangement lol we are truly opposites so it is nothing shy of a miracle hahaha

I felt pretty good yesterday until evening then my face/head/mouth/neck pain came back... it is worsening... I'm not sure as to why this is worsening but hopefully we will get to the bottom of it... Did I mention I seem to have been misdiagnosed??? It is so bizarre when you go years thinking you have something and find out the reason nothing made it better was because you simply do not have it... No wonder I have been so miserably sick! part of me wants to be mad and the other part is like yes! I don't have that... then the other part goes ugh what is wrong then...Moved testing and other appointments up at Mayo... Now will be seeing GI for high liver counts...they aren't extremely high but have been high for about 2 years so they are concerned and frustrated no one else has looked into it more.Praying for answers and health, not just for me but for you too! I have 2 appointments today.... Hope you have a wonderful Monday!!!

Saturday, April 19, 2014

Happy easter! & Medi Udpate

Medi Update: I saw rheumatologist at Mayo, I have  found that I was misdiagnosed with Sjogren's Syndrome 3 years ago... They are very much looking at Postural Orthostatic Tachycardia Syndrome... I tested for it but have other things to rule out.... feeling bad, frustrated, scared. and everything else... I do believe on choosing happiness in hard time and when I write about those topics I am truly feeling that way... however I also feel other ways some days and I dislike them but some days you just have to let it out, cry... or be mad or frustrated you are entitled to feel however you feel... no matter what! Until someone else truly walks in you're shoes they do not know what they would do... Starting to make sense why I have been not finding answers to my sick mystery .... been looking in the wrong place now (been shopping for shoes in the furniture store) I have tried and seen specialist who should very much have caught this thing so I am frustrated but nothing I can do but move forward... Will see Gastroenterologist soon too my liver counts have been elevated for yrs. now and they are concerned. I hold lots of feeling overwhelmed with everything that's happening and knowing how hard I have tried and worked to get well and soo many wrong diagnoses... I will keep going though I will never give up hope...

Happy  Easter!!! May you have a Blessed Easter Sunday! Lots of love, Chelle

Thursday, April 17, 2014

Postural Orthostatic Tachycardia Syndrome Tip #1

HI I am new to the whole Postural Orthostatic Tachycardia Syndrome. I have been starting the fluid and salt intake diet 10,000 mg of salt is a LOT of salt! But I have found one solid tip that helps me in what I call a "salt crisis" when I feel bad or just realize I am far away from my daily salt goal.... I eat a pickle covered in salt sliced pickles like quartered  are the best they have roughly 280 mg a slice and they are a food you can cover in tons of salt... they better part pickles have no calories, no fats, no sugars, they are literally salt and pickle juice is good to salt too and drink... I start and end my day with at least 1 pickle I am sure that sounds rather gross but it works for me... now if you do not have a special salt diet I do no suggest doing this tip... that would be unhealthy for you... but if you Have POTS and your Doctor puts you on the salt diet I say pickles are great for it!! #posturalorthostatictachycardiasyndrome

What I am Doing Today/ Medi Update

Good Morning! Today will be filled with preparing to see my rheumatologist .... Getting records gathered... packing... taking care of Mr. Wrecker... and a lot of list making and thinking on my part my little memory defeats me sometimes so I have resorted to list making and then my new normal routine of salt and water and small exercise. As I write this I know I should go put my compressions back on grr I hate them! But I did not wear them yesterday and paid dearly for it last night...lesson learned! I hope you have a great day! Lots of Love-Chelle

Medi Update: seem to be doing better salt is helping, fluids are helping, exercise I am sure is helping (just complicated because of my trauma pelvis), compressions are very much helping even as ugly as they are. Haven't gotten to raise my bed just yet but soon will. Has a spell of it last night and a lot of salt and compressions took care of it. A learning process for sure. I tell y mom to not worry if something happens just shove a bunch of salt down me ha ha I can tell she is worried, I don't blame her one bit I'd be too!

Wednesday, April 16, 2014

A Good Day!

I love my pup to death he is the best!! Today has been a good day!

 Went to appointments, lunch date with the mom, and of course hanging out with this incredible doggy dog... Still measuring the fluids and the salt, doing small exercise, and I didn't wear compressions today (shh) I needed a little break from those! I am working very hard to not be bummed and to be happy with this life! I bought new curtains can't wait to show you....you will have to see them later alligators! have a happy bright sun shining day! Hope all is well with you if not, hold on tight to god he loves you!  Have a lil fun <3
                              Love Love Love! these ankle boots! the store I got them from is no longer in business boo!

Let it Go.

Let it go. All that stress. The Possible anger. The why ME's. The can anything get worse. the worry. the fear. let it go. focus on what you can do and how important you are. find joy in the little things. Life is short enough with out wasted time on stressful situations that are going to happen in life no matter what you do... it's life, things happen... we don't always like things that come our way and some times they are very hard... that's when we have to put our foot down and fight... choose to be happy in the bad... choose to find goodness in the situation, in others... Choose to put a smile on your face.. Choose to be an example to others that they may bask in your goodness and choose to do some good their selves. We never know how much time we have so make today special even if you are in your living room on a computer... Send a sincere compliment, smile at the person next to you at the stop light, hold a door open for somebody, dance in the rain because if you don't you end up wasting all your precious time... now things are going to happen and they are going to hurt but it's our will to get up and keep pushing forward that makes us special. No matter what you're going through,  get up, walk to a mirror or find a way to a mirror. Look at it YOU are wonderful. YOU are deserving. YOU are beautiful. YOU are strong. YOU are here for a reason. Let it be. YOU are loved! Now tell yourself you love YOU and YOU can do anything! No matter what the situation may be... Have hope. Never stop believing in yourself  and your dreams... Don't let that hope ever leave...( I know some days hope can be so tiny you can barley see him with a magnifying glass) but as long as hope is there inside you the possibilities are endless. -Have a good day, xoxo-Chelle
P.S. God Loves YOU!!! Let him be your strength. Lean on him....You're never alone.
I really did not want to put makeup on or braid my hair but I did and I chose to just keep pushing forward...it helps! Asthma, Endometriosis. Pelvic Floor Tension Myalgia, Sjogren's Syndrome, Hypothyroidism, Possible Postural Orthostatic Tachycardia Syndrome you have met your match!

Tuesday, April 15, 2014

I put my smile on :)

I decided to put my smile on today seems to be a good day so why not smile! spreading a smile can be a powerful thing... So smile when you read this!! it might just make your day a little better... the power of a smile :)
Got the Sweater and jacket at Target a long time ago! I wanted to show you my dress because I love this thing it's soo comfortable and cute!
Remember to smile-Chelle


Love Blueberrie Muffins? Try these little jems for an instand "muffin"

Have you seen these before!!!? I haven't so exciting!
That's right Pillsbury biscuits are seriously coming in blue berry now!!! I am so super happy with these! They taste great and really close to a blue berry muffin... a little more of a biscuit taste but still delicious! without the mess!!!(that's the best part) ha ha! I bet your kids will LOVE these! IF you like blueberries you'll have to give them a try! 2 thumbs up! Delicious.

                                                                        TA DA!

It Might Be Getting a Little Easier

I think it might be getting a little easier.... I have gotten my fluids in everyday and 3-4 thousand mg of salt... still not to the salt goal but hey I am trying lol. getting my exercise in but have a long way til goal... compression garments help but are totally annoying and not the right time of year for this! Can't it be winter! Today I feel okay about it not totally angry or upset or scared just okay though.... I absolutely hate nighttime! everything is worse at night fears just seem to heighten and it's really weird because I'm home alone a lot of days, you would think I would be my most scared then...nope nighttime. I keep thinking I am ready for this thing to be over and then I remember this is the rest of my life not temporary...I am sitting here racking my brain for something happier and fun to post or more positive and I just can't think of anything right now I hope you understand... not trying to be negative... and posting the bad with the good because the bad days are  a part of this journey I am on. Remember to spread kind words this world needs more and be kind to yourself too!! Lots of love-Chelle

Monday, April 14, 2014

I'm Not Going To Lie, This Is Oh So Hard I Can Hardly Stand it! Something Stronger Is Helping Me

I'm not going to lie or sugar coat anything.... this weekend was awful and I am not happy with this new non "official" but "official" diagnosis ... I hate the treatment I can only get about 3-4 thousand mg of salt down without getting totally sick... I still don't feel good but I can tell a difference... I was the girl who didn't salt anything now I have to intake soo much salt and water just to stay safe and out of the hospital... I got a phone call Friday with a whole bunch of things to start doing and they have all been frustrating, overwhelming, and hard. Working out is hard especially when if you over do it you will  make your symptoms worse...I am tired. I have been sick for 7 YEARS & 8 months!! I knew what was wrong with me was going to be rare I new it was going to not be great but I never dreamed I'd have a neurologic condition that effects my  autonomic nervous system that really effects my heart and my whole body and what it does....I hate knowing there may be more wrong...that I am a "mystery". I hate reading in high school I should of had an IEP and didn't even when I took the time to be tested because I struggled so badly.... I served several detentions and in school suspensions for being tardy no matter how many doctors notes I had and really I had no help that direction... they didn't understand I was tardy because I literally couldn't get out of bed and I did everything I could to attend school so tardy was better than none...and looking back I was so strong ...  my mother would speak with my teachers and they'd just be in awe to hear I had no actual social life even though I was Varsity Cheer captain...they didn't know everyday after practice I'd come home and feel like death and want to quit... weekends were spent in bed sleeping to survive the next week... I'm glad I did it I am glad! I didn't miss out on opportunity and reading about POTS it's not uncommon to be athletic in fact it's common... But eventually you wind up at home all the time wondering how all this happened... last night I took all the pictures in my room down...they hurt too much to see, I know that stabbing pain will eventually get better and I will be brave again. All the college I have mastered I now have a 4.0 in college with all these things against me... with actual cognitive problems... I did it ... I won and even though now things are so scary and upsetting and I feel totally defeated, I am a fighter I always have been and I wouldn't survive this life any other way... I know those days that are awful and I say "I quit" , I know that's just the overload of this bumpy uncontrollable rollercoaster I live on. I know somehow I will figure it out again... I am not a quitter no matter what the odds are... things are far from what I want in life or even ever imagined but it's temporary I can lean on my savior... he knows, he understands, life can make you or break you people in awful situations that appear to be amazing they worked so hard to be that way and they probably don't feel amazing all the time... they probably struggle with the unthinkable to us... things we would never even imagine... trials are tough for everyone! WE all have them and we all have help at the end of the day from heaven above, We are given trials to strengthen us... eternity is so much more important that the pit stops of hardships... I received a fortune cookie this weekend in my nightmare reality crazy upside down world I was in, am still in... it read, "Hold tight to your dreams." I know it was a sign from heaven... and I know my heavenly Father understands when I feel upset, he gets it.... but then he sends me beautiful tender mercies like a sentence in a fortune cookie straight from heaven ... I feel beat up but god is with me I am in fact Never Alone the tune that keeps playing in my mixed up head as a reminder of my Savior's sweet love for me I am never alone ever...even when things feel as bad as they can possibly get, " May the angels protect you, and heaven except you when its time to go home, may you always have plenty, your glass never empty, and know in your belly, you're never alone. Never alone, never alone, I'll be in every beat of your heart when you face the unknown, wherever you fly this isn't good bye, my love will follow you stay with you baby, you're never alone... Well I have to be honest as much as I wanted I'm not gonna promise the cold winds wont blow so when hard times have found you and your fear surrounds you wrap my love around you you're never alone"-Lady Antebellum... my first (well probably not my first, just the first time I realized it) tender mercy from the Lord he sent his love in a song and that song plays in my head in the hardest of lonely times... that isn't a coincidence. It is my Father in Heaven taking care of me, wrapping his love around me forever and ever. I can do this, it's a choice. Hard or not, a choice.

Saturday, April 12, 2014

My Medi Update

HI! I am still not feeling well but still doing better.... drinking all these fluids has been easier than getting all that salt down... seems to help though...I am very tired today... I do not like compression garments... feel like a blow fish all puffed up...oh, salt...

Friday, April 11, 2014

I kinda disapeared... to the hospital...

My Neurologist sent me to the E.R. in my home town (which I do not like) but he wanted to make sure I was safe and stable..... I nearly passed out a ton of times, I collapsed a few times, I tremmored for hours, when I didn't tremor I shaked, I sweated hot and froze cold over and over (No Temperature), I was woozy/dizzy, my heart rate jumped hi every time I sat up, I was weak, my eyes dilated, my blood pulled, I was very nauseas, and they found nothing besides a very hi heart rate.... however the doctor who I really dislike put 2 huge bags of IV fluids in maximum of an hours time!!! into me which made me worse and caused my kidneys to hurt so bad! I ended up being admitted after no improvement but throughout the night got better and better all the water made me pee like a crazy and that was no fun.... I now am being treated for Postural Orthostatic Tachycardia Syndrome...  its where your autonomic nervous system does not work properly (everything your body does automatically like when you eat something you don't have to tell your tummy ok digest...it just does it) if causes high heart rate and low blood pressure and worsens when you stand to where you nearly pass out or do pass out...however am not "officially diagnosed" I have to elevate my bed, drink 85 fl ounces of water a day, get my broken body to get exercise, and consume 10,000 mg of sodium (salt) a Day!!! nope that was not a typo 10,000mg of SALT!!! I get to wear pretty compression garments and that is just to keep me out of a hospital... there will be more to come when we know more.... I am overwhelmed and scared but I have faith in my savior I know he can help me and guide me and be by my side I am never alone miracles will happen! I am home now and happy to be here!! I just put a little over a thousand mg of salt in a cup and through some pickle juice in it and drank it and I have consumed much fluids today and I have less urinary frequency... people we may be on to  something...salt...

Thursday, April 10, 2014

Yesterday the Weather was SOO Nice... I Basked in the Shade

No makeup, No worries.
So yesterday I woke  up bright and early or shall I say my mother dragged me out of my bed because I have such a hard time waking up now.... for an early appointment. Hoo RAY! I went to my counseling session to deal with my medi problems and felt pretty good after so I went across the street to wall mart... A creepy guy stopped me to tell me I was beautiful ... it was not one of those situations of someone just being kind he was very creepy about it so I got out of there fast! I wasn't there long just a little pick me up shopping for a few items needed and came home to bask in the sun which ended up with my lawn chair failing me 2 times and I fell onto cement ouch! I am okay though no worries just bruised....and I didn't last long in the sun, in a few minutes I was up against the block wall in the shade haha and that's where I stayed... Mr. Wrecker enjoyed the fresh air of being outside...and as healthy as vitamin K and D are from the sun ... even in the shade you get fresh air and it just makes you so relaxed! Hope you all are feeling well and are having a happy day!!
                                                                                                       Chelle, xoxo
P.S. Medi update: everyone I just woke up I had as awful of a night as I have ever had and it was long, scary, as well as very hard! it is sooo hard to type this, my hands feel like they are asleep and don't move how I want them too...I have been on a good streak with overall doing better not having so many crazy nights like last night and days like today... So today fear sets in because feeling like that is indescribable and frightening and it's like you have no control over your body and it's doing everything wrong! This body is sooo worn out even after sleep I feel like I have been electrocuted and ran over by a bus! I can tell it's going to be a long day and I am indecisive about calling my doctor. It's amazing to me how I can have such a decent day and by the end of it I look lifeless and broken... if a picture truly is worth a thousand words I hope they explain how I am feeling ha I did call my neurologist... nurse is suppose to call me back... I hope they can help me feel better! I will be here on my couch waiting ...I did not post this picture for anyone to feel sorry for me. Nor am I trying to be all whinny ... I just want to show you how sick I am ... I feel it's an important part of me that needs portrayed ... to show just how ill I really am and that not every day is rosy...

Wednesday, April 9, 2014

I am One sick girl

I am one sick girl right now I just almost passed out for no reason and now I feel awful and I have been burning hot or freezing cold for hours now! The only way I can get through moments/ times like this is to pray pray pray and have faith and hope for healing "Have no fear for what man can do for god is with you forever and ever." I apologize I do not know what section of the scriptures I found that in I just remember it and am too sick to look.... now my face is literally burning something tells me I am in for a long night.... hope you are doing better than me-xoxo see ya tomorrow!11:30p.m....now...still very miserable and I can't even fully describe how I feel...besides as awful as ever possible. going to call my specialist tomorrow I think which fills me full of fear that I will be blown off or not taken seriously but I am very ill and I know it is not good to be this ill there is no way possible! hoping they help me...frightened-Chelle

A positive to being 4 foot 11 1/2 inches!

So today I was shopping at Wall Mart and I bought these super cute shorts in the children's department for about 3 dollars... One of the biggest positives to being so small is the fact I can shop for some items of clothing in the kids section and find steals like this for example...however kids clothing is normally as much as adult clothing and I can't wear all kids clothes and I mostly shop in the teens section however I must admit under my boots normally lies four to five inches of rolled up jeans lol  and shoes are impossible to find especially heels but on occasions such as this I am pretty excited to be so small! happy to announce today is beautiful spring summer fever weather!

easter center piece & exciting new things

Yesterday I made this simple center piece out of a glass dish we had lying around the house and ribbon/tool well also had lying around...I started by making the bow  gluing a thinner purple ribbon to the middle of the wider yellow ribbon and then I attached to glass dish then I filled half the dish with white tool (so there doesn't have to be as much candy because I am a candy aholic) then finished by putting Easter candy in the bowl... nothing too fancy but simple.
Below: is our new/old dinning room table and chairs I say new/old because that table is an antique (I wish this photo showed the clawed feet of the table) and the chairs are new from target they are super cute and the padding in the chairs are great I thought they'd be much harder.... notice we are missing one chair?? we received a bad one and it would not go together so wait we will but we are happy with our new dinning set! The place mats are very spring like they are super cute got a set of 4 at ross for around $5.00...

Tuesday, April 8, 2014

The Reason My Blog is Purple This Month....

I chose the color purple easily for purple is the color of Sjogren's Syndrome Awareness and the month April... I have been diagnosed with Sjogren's for 2 years and now I have several doctors arguing if I have it or not... time will tell... But Sjogren's' s is a serious disease that can be debilitating and causes much frustration. The hallmarks for this disease is a Dry mouth and Dry eyes... this is true because people with Sjogren's do suffer from this and it is due to inflamed saliva glands and tear glands.... the body attacks these glands for no unknown reason...(it too is an autoimmune disease) I don't like how they say Sjogren's is just dry mouth and eyes such on the Tv shows because their are SO MANY MORE SYMPTOMS TO THIS DISEASE! like sever fatigue, rashes, joint and muscle pain, brain for, peripheral neuropathy, stomach issues, hearing issues, headaches and much much more! Famous Venus Williams (the woman who plays pro tennis) has Sjogren's (just a little fact) If you want to learn more about Sjogren's Syndrome or even help with a donation for research click the link below! I pray for a cure not for just for myself but for all sufferers of this devastating disease...

My symptom list (everything but the kitchen sink) Medi update

So I decided I am going to call medical updates from now on "Medi updates"... I am currently seeing a rheumatologist, & Neurologist at Mayo Clinic ( this is just a mayo doctor update I have other specialists for female issues and pelvis issues and I am seeking treatment and responding so hip hip hoo thankful for that!) back to Mystery me.... the Neurologist last Friday spoke of a possible diagnosis of Postural Orthostatic Tachycardia Syndrome...and my rheumatologist thinks I may have been misdiagnosed with Sjogren's Syndrome but is not sure....it's a possibility as well... I am to the point where when someone proves to me I have something (and they are going to have to really work hard on it) I will believe it...until then just keep swimming... I get nerves and sad and frustrated and mad and sad and nerves... it feels like an never ending cycle however I am trying not (post general conference) to be hopeful and thankful and replace fears with faith....So a lot of tests I will have from heart tests to EMG to audiology, to kidney tests...I am going to list my symptoms are you ready?? it's a long list!
pain in joints, bones, muscles
Can't sleep
brain fog
dilated eyes
hearing seems off slightly
redness across face
red ears
red swollen hands
purple, PURPLE feet/ or bright red, burning, & swollen
resting heart rate 130, to 160
chest pains
nightly headaches
shakiness almost tremmory
numbness left lower side face
tingling lips (like when you get a cold sore)
 nerve pain in face/ incisive papilla
hair falls out a lot
S.O.B sometimes
tummy everything
Stomach/ intestinal spasms
sometimes I pee too much
Pelvic Floor Tension Myalgia/pelvic pain
Sores (Lichen Planus)
really intense lower back/hip pains that last like weeks at a time
can't regulate temperature like normal
Low grade fevers
nervousness ( like body not mind)
front neck pain that shoots through collar bone
Throat swells, gets really red, hurts(docs always think I have really bad strep) comes once in a while.
Thyroid is slightly low

Monday, April 7, 2014

For the Love of a Dog

This is my Best friend ever!! In my blog (what you are reading now) I refer to my dog as Mr. wrecker... as you know I have been chronically ill for seven and counting years.... I got this dog as a puppy when I was 17... I was dealing with poor health then too and all I wanted was a cute little puppy dog! He is my first indoor pet... which can have its challenges at times ha ha...He has brought me much joy and I seriously love him to death! This dog has endless love for me and I am just super lucky and blessed to have him in my life to comfort me when I am sad and to make me laugh when I am happy...ups and downs dogs are the best comfort! I seriously suggest getting a dog!
This is when I got home from being out of town for weeks due to non stop vomiting (still no answers to what was wrong... I am a mystery)

 Mr. Wrecker is good at photo bombing me
Mr. Wrecker is always happy to just lay around and do nothing with me haha

Simply Tender Mercy!

Life is full of ups and downs.... I have had a very frustrating week leading me to test all my patience and just about every thing else! but I knew general conference was near and all would be good after I hear these wonderful words and received guidance...This after the hard to swallow news that I may have postural orthostatic tachycardia syndrome... ALL I wanted to do was listen/watch 184th General Conference... But amazingly I had a very hard time just doing this and I thought to myself why is it so hard for me to just hear those words I am sooo eager to hear... I actually agonized waiting...I had a test of patience as the internet failed me and where I live you have to request in advance the BYU channel to view conference on TV...(at least with our TV plan) and I from now on will ALWAYS do so in advance... I have never had a problem before streaming conference online but for some reason I did...maybe my patience was being tested... But actually tonight is the first time I have gotten a whole section of the conference at one time. When I finally did get to hear those words I had been so incredibly anxious to hear I was overcome with joy and more importantly the spirit! I had tears in my eyes several times listening to the beautiful talks and finding the perfect guidance I need at this moment in life. I am so thankful for our Prophet and for the quorum of the 12 and the 70! God was definitely within them and me during their talks. The spirit was high... I know no man could make these things up and it is such a blessing to have General Conference!
I must add a story to when I started listening to conference tonight I had gone to brush my teeth, wash my make up off, and take my meds (during the half hour I already viewed the previous night) when I came back to my bed where my laptop was there was a tiny strip of paper... I immediately knew what it was... I picked it up and read the written words, "It will be okay."- Jesus Christ Nov. 17, 2013. I had earlier in November had an amazingly wonderful words can not even explain thing happen to me... I was very down struggling with my health and pushing forward in the Book of Mormon. that night I finished reading and moved onto prayer, I prayed I could have some sort of form signal anything to know if things would be okay... What I received I was not expecting but forever am grateful and full of gratitude... in the most wonderful humbling male voice I heard "it will be okay." I immediately knew who it was, it was my Savior Jesus Christ. I hurriedly wrote it down and the experience in my scriptures so I would never forget. later I wrote this on a piece of paper and tacked it to my wall by my door to be seen every time I went out  of my room... later It was replaced by scripture quotes and moved next to A dried rose on a shelf in a vase next to an angel figure.... This dried rose is off my Granddads' coffin my sister and I both have one and he is my angel watching over me he actually visits me quite often in times of need as well as other lovely angels.... I have not moved this paper off the shelf except to maybe hold it. remember it. and set it back. After I had returned to my bed this evening and found that tiny piece of paper on my bed I knew an angel sat it there to comfort me and remind me even though I am SO scared now... it will all be okay...Like conference says trials bring the biggest blessings and make our foundations stronger.that is so true! I have heard my redeemers voice and he spoke out to me and poured his love around me. I am lucky, Very appreciative, blessed, humbled, and forever deeply touched by such love. I can not even begin to explain it or out in words my emotions on how wonderfully blessed I am! I testify to you and anyone who reads this god, his son our redeemer Jesus Christ, and the holy Ghost are very real and true their love for us in never ending and I write this in the name of Jesus Christ, Amen.

Saturday, April 5, 2014

Neurology consult results & pre-general conference

Friday I saw a neurologist at mayo Clinic. He basically thinks I could have Postural Orthostatic Tachycardia Syndrome. This news was hard but I had a spiritual visitor around that helped a lot! (my granddad who passed away a few years ago. In fact he has visited me during some of my hardest challenging times... and other special souls... I believe that the veil between this world and heaven is very thin and our loved ones are our angels... in the D&C:88: "I will be on your right hand and on your left, and my spirit shall be in your hearts, and mine angels round about you to bear you up." I know this is a truth and a blessing! That is one good thing I have gained out of sickness is blessings to notice when my angles are around me....BACK TO MY APPOINTMENT... he feels I very well could have Postural Orthostatic Tachycardia Syndrome but has a lot more testing to do before an official diagnosis ... I was heart broken to hear this it scares me to know my nervous system could be the reasons for my sufferings it sets in deep. I will continue praying and studying my scriptures... god can heal me! but it also has to be god's timing we don't always know what is best for ourselves but I trust in the Lord. Due to some testing we had to stay out of town an extra day and I just got home and I haven't even had the opportunity to stream today's general conference! I was looking forward to this very much so I am saddened but happy for the internet so I can watch it In a minute and view tomorrows session live and be all caught up and full of our savior's love and our prophets advice for me... I need advice spiritually right now... I am very interested in what conference has in store for me... in fact I am hurrying to type this so I can watch it! but I felt it was important to type a before conference and  after conference... I will post again Monday:)
testing I am having includes several heart tests, blood tests, EMG, lab tests,hearing tests, and I think that's it ... Happy Saturday night may you have a blessed Sunday tomorrow! LOTS of LOVE- Chelle

Thursday, April 3, 2014

Lichen Planus in my hair!

This is a picture of my forehead/hairline and I am having a little lichen planus flare and thought hmmm education time... So lichen planus is an connective tissue autoimmune disease where your body attacks itself... in a lichen planus case the cells are being attacked at the dermis where the cells are being created...diagnosis consists of a skin biopsy... treatment ranges from topical creams to immune suppressants to chemo. for me anyways I get it in my hair and its like a bunch of little red almost bite looking sores which is very embarrassing because I wonder if people think I am not clean or have fleas or something Idk. but it basically burns and hurts and it scabs up and gets white like it is going away and then it doesn't and the process just continues I have had these LP sores for a few weeks now and I am not complaining I mean I could have it so much worse and I know it but still just thought I'd do an LP lesson:)

I am going to the doctors today (well I am traveling to Mesa where we stay) and going tomorrow... I am so very scared about what the outcome of these test results of my nervous system will be. God is in control! I am also nervous for physical therapy because it has been too long without it...I thought I would be okay to go an extra week, boy was I wrong about that I am going to be soooo sore.... no pain no gain.... have a safe weekend and spread love:) Love you all!

Wednesday, April 2, 2014

Continue with Caution*

So this morning I gave my self quite the scare when I accidently grabbed the wrong medication and took it and looked down and thought "did that just happen!!!" panic sat in immediately! When realization set in that I had made a HUGE mistake...I first tried to vomit that didn't work. I prayed and prayed "please just let me be safe let me vomit"... So I called my doctor praying in silence while on the phone for my safety ...and they didn't even ask my doctor or any of the P.A.'s there... they asked the medical assistant... I AM A CERTIFIED MEDICAL ASSISTANT and I happen to have been one longer then this one and I dang sure didn't know what situation I had gotten myself into... I didn't trust this answer& neither did my gut... I was at home alone and I just kept thinking about time how much time did i have to make this safe was something awful happening. I am SO thankful for my sister who happens to work at a doctor's office...I quickly texted her and she replied right away in about 6 seconds that she talked to the doctor and I was totally fine it was just going to make me sleepy. PHEW! Relief came over me fast! I am happy to announce I feel just fine so far and it has been hours! I am so thankful for my dear heavenly Father who I know answered those prayers of mine earlier today he kept me calm and safe and I am feeling so good I know he is in control of this! I am also grateful that it wasn't a more serious situation as it could have easily been one with a different medication...I take so many and I obviously need to come up with a safer solution... I am writing this so that if you take several medications you can be aware too and make yourself safe so this situation does not happen to you! My prayers where answered today and this I am forever grateful!

I Choose to OWN My Pale Skin: Ivory complexion tip!

I know right now it isn't necessarily "a fad" to have pale skin but I can not tan my skin for I just break out in rashes and burn.... I used to get really frustrated about this because all the pretty girls always had tans and here I was all pasty white all the time but as I have grown older I have learned to own my pale skin and I am happy I am not tan... Having a pale complexion is part of me and I am an original not a copy so I have grown comfortable in the fact that my skin is soo pale... I'm  a redhead it come with the territory. This is how God created me... I now consider it natural beauty and I am writing this to encourage all girls/women to be your self always and you will shine and stand out for being simply you it's not about the latest fashions and trends ... it is ALL about what is in your heart <3 so if you have naturally pale skin don't be ashamed be proud of who you are God himself created your special body :) ( just to be clear I have absolutely no problem with people who are tan or tan their skin! YOu are beautiful too!)
P.S. a little makeup tip because makeup is fun and it's fun to dress up.... ever notice bronzers do not match your ivory complexion just right?? That is because our skin is more translucent so colors show more on our skin  And with paler skin I noticed people can seem to think I look ill when I am not So therefor blush and bronzer we turn to ... we tend to just simply not look right 100% with regular bronzer...(they do make certain bronzers for pale skin but it's probably not going to be found in any drug store and probably will be very pricy) here is the tip: just go get a powder that is 2 shades darker then your shade of skin and it will be a much better match for you when you decide to get all dolled up :) I learned this today and I can not wait to try it... I have struggled with bronzers and just gave up a few months ago with them because I felt they just didn't look right and when I'd wear just blush people liked it better...So this frustrated me because I wanted to contour my face a little ... So I am excited for this new tip and I had to share <3

Tuesday, April 1, 2014

RANT! (doctors offices)

So if you see several doctors you will totally understand what I am talking about.... Today I call for a record request and to see if they possibly already have it because, I received a packet in the mail with record request forms.... Before I started going there I had already talked with a lady about it because on my psychiatrist I forgot to write down her type of "speciality" This was months ago ..... of course today I called asking them to look to see and I literally no joke talked to 5. FIVE! different people and then they argued with me about this and I told them I know you have the forms because someone contacted me before I started going here and we went over it so she could send for a record request and the psychiatrist issue on the form came up... So I told them this they have already sent for records you might have it already and if not u can send a request... i saw a doctor at their facility and he had several records from old specialists. The woman replies, " Where is this doctor you want records from located?" I answered and she says "can't you just go their and pick them up"... my reply "no it's an hour out of my way and I am already driving 4 hours to get to you".... I could hear the eye roll over the phone.... so we continue talking and she says "I only have one record here for your appointment"  I said "oh really from who"... it was my primary care doctor.... so I replied the last doctor I saw (in this facility) had several records from several of my old specialist he went over them with me at my appointment...I was told, "we don't have them here in our drawer"... I reply "well he himself said he would send them because that's why he wanted a neuro consultation".... She goes "oh" and puts me on hold comes back " I have to look in the system and it is  really slow can I call you back later." I reply "yes" and gave her my phone number and I said  "thank you" HER REPLY "MMMM" SERIOUSLY JUST BE NICE! I'm ripping my hair out I know how these things work one doctor would not have all my records and the other one have nothing when it is the same facility and everything is online onto one account. I am suspecting somebody just didn't do their job correctly or didn't listen to what I was trying to say... I hate being blown off by office people.RANT over!
*This is the face I make when I rant about doctor's offices! JUST KIDDING I AM JUST BEING GOOFY! I GUESS THIS PICTURE IS MY APRIL FOOLS APRIL FOOLS! BUT MY RANT IS NOT LOL :) please just remember to spread kindness & I will too.