Friday, May 30, 2014

Heavenly Flowers

These Flowers are such a beautiful creation from God... I always think of heaven when I see beautiful flowers. Something about them makes my heart happy <3
Blessing. Such a simple but very powerful word. I feel sooo blessed these past few days, I feel the spirit strong in my heart and I know things may not be so sunny in the small picture of life. In the large picture however things are fantastic! I have been able to help my mom plant some pretty flowers and it was not easy for my body and I had to do some "simple" tasks my own innovated way, such as sitting down ect. but I still was able to complete the task... I am so proud of myself! we haven't had flowers in years because of our frequent trips out of town for medical care... as my Neurologist and I connect through email it saves me trips... and I am hoping and trying to cut back on some physical therapy yayayyy after nearly 2 long awful rehabilitating years I get to cut back a little on my that does not mean I am healed and better I just am doing better.... which golly 2 years! I should be showing some improvements right?! I am stuggling with my Postural Orthostatic Tachycardia Syndrome/Dysautonomia and Mass Cell Activation. Now I look forward to more rehabilitation and healing and I get myself in a tizzy over it all it is truly overwhelming for me. I am very scared but I read a simple post yesterday that said "doubt your doubts before you doubt your faith" I think Meg Johnson is the one who posted that she is amazing! check her out at,d.aWw I feel that quote was a sticky note from heaven for my eyes to read so I could let the worry go and be strong and ready to fight this battle with my faith in our ultimate physician Jesus Christ. He is the ultimate healer, he knows how you feel, he understands, I love him I can't wait the day to just give him a big ole hug! But until then I will do my work here on earth the best of my abilities even if it means sitting down when I would usually stand. Or rest when before I did not need to rest. Things aren't always my way but they are the way they are meant to be <3 I have to just do things my way, Chelle's way... Heavenly Father's way.

Thursday, May 29, 2014

Micro Sized but Readable Book of Mormon..

Do you ever wonder what would happen if you had teeny pocket sized yet somehow readable Book of Mormon in your pocket at all times to give it to any whom you felt.... I just wish that was possible because I truly wonder how many more souls who would not normally of had the chance of teachings of the word of wisdom... I am pretty sure I would be running (well I can't run right now) so I would be doing my best to tell the world about the wonderfulness of the scriptures and I probably would give one to any who would take... I'd be outside the grocery store with my tiny books like a girl scout luring in  any ears or hearts that wanted to hear hahah and I know my heart would be happy. I just can't shake this wonder...I can not imagine my life with out it and at one point unfortunately I did not have it in my life and I am soo glad I opened my heart to the most wonderful blessing of all time- God Loves you. Jesus Loves you. They are waiting for you with opened arms, always. trials in life are hard and I just can't imagine pushing forward without the knowledge of the resurrection that we are gaining bodies here on earth to return to heaven, for eternity and learning lessons to strengthen us... and the joy in life I feel I feel the depts. of happiness, peace, comfort, and humility with this confirmation, life is beautiful. Because of God and our Savior. My Savior. Jesus Christ.-Chelle

Wednesday, May 28, 2014

Update on me and how i am handling my struggle

I just wanted to post about how I am doing with life with POSTURAL ORTHOSTATIC TACHYCARIDA SYNDROME/ DYSAUTONOMIA & MASS CELL ACTIVATION(1/3 OF POTS PATIENTS GET MASS CELL ACTIVATION)First I'd like to say I can barely feel my hands and fingers from the wrists down (both hands) which is making typing very difficult... I am having a very hard time and I feel almost obsessive of all my symptoms and I know they are just symptoms and I am safe.... however knowing what is truly going on sends me into panic and worry. You would think that I would feel safe and less worried but for some reason my brain just can let it go. It is a vicious cycle of worry...I pray for help with this and for comfort... especially at night when it is the worst.( I do not know what it is about night but everything hurts worse then) I am taking my new medications for mass cell and I knew it wouldn't be an overnight fix and I have a long road ahead but I just feel so frustrated with it all the diet "how much salt did I eat", "how much water did I drink", "urgh I still didn't make goal!" the constant medications... I just worry too that I am not better and I am trying so hard to put it in the lord's hand for he knows what is best for me... but I still struggle with drowning in constant worry... I am trying and for now that is all I can do. Sometimes we have to stumble and fall in life and I think we learn the most when we are down... hoping I learn and awaiting happy moments for they are what keeps me going like the olive leaf and Noah.


Hi friends! If someone from MICROSOFT/WINDOWS CALLS YOU ON THE PHONE and tells you there is something wrong with your computer and they can fix it over the phone.....IT IS A SCAM, A PHONE SCAM. AFTER THEY "HELP YOU" THEY STICK YOU WITH A "BILL" AND USE YOUR INFORMATION!!!!!! PLEASE O NOT FALL INTO THE BIG SCAM! THEY ARE TRICKY.... and yes Microsoft already knows this is happening not too much they can do of course... so don't blame them, it is not their fault...someone is just using there name.

Tuesday, May 27, 2014

The Importance of Prayer

I have always been aware of how important pray is (well almost always) in my early teens I didn't have a testimony nor did I know if the church was 100% true. But in a short time I discovered it was true and soo much more. I am so grateful for this discovery for it is the best thing in life I have ever learned, or gained. The power of prayer is amazing, followed by the Holy Ghost. In times of trouble prayer is there to turn to for help. In times of uncertainty., prayer is there to help guide us. In times of worry  prayer is there to give us the spirit of comfort. In times of happiness and joy prayer is there for thanksgiving. In times of Sorrow prayer is there to lift us up. I could go on all day...At times we need prayer for others.... prayer is there to talk to your heavenly father he hears every word. Whether in silence or aloud, every word is heard and he listens. Sometimes we pray for things and they do not have the outcome we would of liked or hoped for but remember our heavenly father knows what is best for us and those around us.  Eventually we will be able to look back at those moments and go aha! that is why such and such things didn't work out the way I wanted. and you know what normally comes after those moments.... Gratitude and a dose of humility. Prayer works, prayer is a blessing from heaven to use against the rocky currents of life. When in doubt pray....he is there for you waiting with opened arms, in any situation...HE LOVES YOU <3-Chelle

Monday, May 26, 2014

Grateful American. Happy Memorial Day!

Today I am especially grateful to be an American! Happy Memorial Day and a BIG Thank you to ALL who have served and are serving this country! you are all wonderful blessings to us! I am aware the large price that a lot of our service men and women have paid for our Freedom! I am forever grateful! xoxo-Chelle

Saturday, May 24, 2014

Donate to Postural Orthostatic Tachycardia Syndrome Antibodies Research.

please if able, donate to POTS Antibodies Research...through  Dysautonomia International. I  recently got diagnosed with POTS/Dysautonomia and there is such little help for the disease. it is truly a crazy disease with even crazier treatments.... I would love a cure one day:)
here's the link 5$ or10$ it makes a difference!

Friday, May 23, 2014


Sometimes I wish I lived in an airstream... I seriously love this song! I am a huge fan of Miranda Lambert and something about this song makes me super happy and wish I lived in an airstream! When it was newer, one night my sister Chelsey, Mom, and I where at dinner and we were having such a good time because on our way there my sister found this really old beat up camp trailer driving by us and I was singing this song so we laughed all through dinner at how I was going to live in an airstream hahaha good memories <3



Thursday, May 22, 2014

Just Me*

Some days are just plain boring, makeup smeared, real raw days... and that's okay because I know it is a part of God's plan for me and that is good enough for me.

Just me*

Wednesday, May 21, 2014

Listen to your gut, when taking new medications

Listen to your gut when taking new medications if it just doesn't seem right it probably is not... I just started taking a new medication and I spent  all afternoon on the phone with the pharmacy Monday (granted it is a complicated medication) but NO excuse. I was mixing the medicine with water and I just kept thinking this isn't right...this isn't right and I decided to call my cousin who is in pharmacy school and I asked if that sounded right ...he ended up being stumped and so I looked at it some more and kept thinking and I finally figured it out each packet contained (5 vials) each vial contained the amount of medication, not the package so the pharmacy had me taking 10 packets instead of 2!!!! that's 5 times the amount and then I would take it 4 times a day so that is 20 times the amount! I am very thankful for my heavenly father, he watches out for me... I knew something wasn't right you all know that feeling listen to your intuition... be safe! I now have pharmacy anxiety...

* and I just logged onto Facebook and saw this app that helps keep you safe with medication... here is the link:

My Hair is Falling Out

 So today I had a bunch of hair fall out, I am assuming it is from all the medication it is not the first time but I am trying to grow my hair out and it kinda broke my heart because I want my old hair back and as I cried (just for a minute) I remembered my 2nd favorite verse out of the Bible,
Job 14:7- For there is hope of a tree, if it be cut down, that it will sprout again, and that the tender branch thereof will not cease.
...So, I curled my hair...


I have been really wanting to go on vacation but I can't because I can't do a lot right now. due to being sick. So I have been reminiscing about my last vacation... it was a girls trip with my great aunt, 2nd cousins, aunt, 1st cousin, mom, sister, and grandma... we went to New York, New York and it is my most favorite place ever! I suggest you go if you haven't! we also went to D.C. and it was fun too we toured the White house and the pentagon... and all that good stuff. WE all had such a great time and it was the last time I actually had fun I think haha but I am grateful for the memories that I will always cherish... you can take your memories with you to heaven but you can not take things there (perhaps a car or something) that is something great, and memories do not have to be a fancy vacation they can be something as simple as a picnic or some good family time. Create memories while you still can memories last forever.
Me and my sister at the Hersey's Chocolate Factory in Time Square...Time Square is amazing!

My Sister, my mom, & I outside of the White House.

Tuesday, May 20, 2014

A Box of Medication???

This is my box yes, box of Cromolyn... medication for my mass cell activation... Nothing like walking out of your local pharmacy with a box...people looked quiet surprised! I bet they would of been more surprised to know it was just a 20 day supply of one medication... haha I have so much to figure out in this new life I am living with a rare disease, starting to learn rare diseases are complicated... most doctors have no clue what it is and if they do they really don't know how to treat it or anything so they like to say it is all in your head...then if you go to the E.R. even after diagnosis they still treat you like you are nuts... then when you go to the pharmacy they don't like you because hey have to order all this weird medication and they really don't know much about it and it confuses them... then sometimes when you are having a bad day and shaking: people stare at you (I am the girl that used to pretend everything was great when I was sick, but as years have progressed I can't hide all of my symptoms and pretend I am fine) and that's okay I don't have to be fine all the time... and no shame in being sick maybe frustration but no shame.... Keep going you can do it! xoxo-Chelle

Don't ever let anyone or anything take your beautiful smile away! :)

Monday, May 19, 2014

Tender Mercies Through a Song and a Little Book

Once again I have felt the very comfort from my heavenly father through this song... I have been trying my hardest to be grateful, positive, & happy these past few days but the sting of a new disease and a new life is getting to me. The diet I can not win with, the crazy expensive medications, the getting stared at today while I waited in line because I was shaking badly, tremoring.  (I don't feel very well) What those people didn't know was I was using every single thing inside of me to stand there and get that tiny important task done. My heart felt sad then to come home to find out the pharmacy lost one of my prescriptions (don't even ask how that happens. they do not know) I know my father in heaven hears me always and he does understand and he does carry me through those tough times that seem endless. Just like in Noah when the dove brings back that olive leaf... songs like this are my little olive leafs they give me hope and remind me that the trial will eventually come to an end no matter how long. If you are having a rough day it is okay.

I opened up my book of faith and read DOCTRINE AND COVENANTS 105:40-41
According to the voice of the spirit which is in you, all things shall work together for your good.
41 Therefore, be faithful; and behold, and lo, I am with you  even unto the end. Even so. Amen. You may be the child of light,

 Remember that but also remember tomorrows a new start and things can be better:) xoxo Chelle

My Book of Faith


My Book of Faith
This weekend I had a heavy heart yet, Jesus let it be filled with warmth and good and love.... the new diagnosis is wearing off from yay to urgh... The realizations of a new disease living and coping. Can't seem to get my salt diet right or my water right... medications/new life style is adding up... ONE just ONE of my new medications is roughly $1,000.00 A MONTH! I keep reminding myself how I need to stop and be grateful for the diet, the treatments, the help, the hope and I know that is what My Heavenly father wants me to do so. Also, We had a scare this past weekend with a precious loved one being very ill, scary ill would be the definition...such a sweet little baby that was very sick...So as my heart hurt for her and her family...and my mind worried... I needed to do something to help me feel better. I prayed the whole day and I am happy to announce she is doing better not necessarily great but better. God has answered our prayers! I have taken my courage and I spent all day Saturday in my scriptures just soaking up all those "sticky notes" and highlighted parts that have lifted my heart so much in good times and bad. I have been really wanting to put all of those little words of god into a sort of scrapbook so I could just pull out my favorite versus and fill my heart up... So I wrote, and I wrote, and I wrote. lol I still have a ways to go and am starting to wonder if this book will be having a  volume 2 or 3 haha... but just tonight it served its purpose I felt down a little and it reminded me of the important things and made my bad feelings lessen. I already have so much love for this little glued together simple book of faith (not that this book makes my faith, I do that but it is a wonderful thing) Being sick is a trial and trials are tough but I can honestly say if I were asked today if I could have my sickness taken from me all these years and go back and live a "normal" life, I would say no... I have gained such beautiful blessings through my hard times and I have learned very much which makes this tough journey worth every enduring second. I know with my faith and my Redeemer I can endure all hardships.
Started out with my favorite scripture quote
D&C 84:88
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.

Meg Johnson's
 Another thing I am doing thanks to Meg Johnson I decided when I feel like I can't do it anymore or when I seem focused on the negatives I will simply start writing all the things "I can" and I have a notebook just for it and honestly it works great... gets me feeling grounded again. after a few minutes of it I fell asleep last night and in a much better happier grateful mood! So Thanks to her awesome inspiration <3 I am truly thankful for every single thing that I do have, & I may not have everything (but no one does) and material things are just things they all kinda make us happy for a minute and then in time that happiness wears off... but with family, health, faith, & friends those important things never loose their value now do they?? I feel humbled right now... a little nervous ...either way god will get me through it. <3

Saturday, May 17, 2014

Medi Update

Medi Update!Have been treating Mass Cell Activation with akkergy meds... loads of it!  Soo I have hit a bump in the road, which is to be expected.... having a super hard time falling asleep and no energy, heart rate is high but yet feel faint. I feel like a raggedy Anne doll, just floppy, also numbness. tonight my mom and I ran to get dinner I had the drink carrier in my lap and I held tighter as we went around a corner... except my hand didn't get tighter and drinks went all over (except lucky me it got on me more then the car) which I am glad about can't through a car in the wash but you can a dress. Tonight has been filled with dizziness, brain fog, tachycardia, I am assuming low blood volume, funky breathing, shaking/tremors, lots of pain nerve pain, and hot and cold at the same time... sweating hot yet shivering with Goosebumps. I am very knowledgeable that I have a plan here on earth and whatever God's plan is I will continue forward. If I am meant to be healed I will... if I have a purpose as being ill I will. God knows best for me!

Friday, May 16, 2014

Thankful for my Olive Leafs

I am SO thankful for my olive leafs! <3 must listen!!! Thank You Meg Johnson

Heart Smiles Episode #5: Sending Forth Our Dove | Meg Johnson Speaks

Be Kind On Socail Media

I have a question... Since when is it okay to take a picture of someone (a total stranger) post it on social media and say something negative or mean to someone... I mean we see it all the time and it's okay to do in our society but I definitely do not think it is right! It is bullying really... I think it is shameful really, be kind to others and if you are already kind then great! I am proud of you! :) I just had to rant that please, let's work together to make the world a less cruel place to live! xoxo-Chelle

have you heard of Lizzie Velasquez? She was bullied on YouTube and has overcome it not by getting mad or even, but by showing her goodness! here is  a link:

Thursday, May 15, 2014

The Importance of Uniqueness

I believe uniqueness  plays a very important roll in our lives. I believe as individuals we are no two exactly the same. I believe in being you & only you. God put each and every one of us here on earth and he gave us each a special gift that no one else has and that my friends is our uniqueness. We are all special.N one mimics another exactly the same, some can sing some can dance, some can decorate a room, or build the biggest buildings but no two souls are exactly the same... Our differences help create ideas and survival.Uniqueness helps us build friendships, relationships. love, support we are all here for a purpose and our uniqueness will point us in just the right direction we should be going our uniqueness is a compass in our tool box of life... uniqueness is a necessity
Uniqueness gives the world diversities we need... I personally feel my uniqueness is a tender mercy sent from above.... when younger I looked down upon it, now I see uniqueness in a whole different  way it is a beautiful gift from god to make being your special self a little bit more special.

Wednesday, May 14, 2014

Just Me

Today I am going to just spend my day here at home.... by the end of tomorrow I will have been home for 4 days in a row! I hate not getting out of the house like just is not healthy. I have been stuck here due to my Endometriosis pain... it is the worst it has been since surgery (2 years ago) and I really do not need surgery right now with everything that is going on with my Postural Orthostatic Tachycardia Syndrome/Dysautonomia and Mass Cell Activation...  I think the treatment may be helping fingers crossed knock on wood! I plan to Jackie Chan those Cells and every other thing that trys to get in the way! I am going to fight that fight... if you don't who will??? You can do it! I believe in you! Stay Strong and pray, god hears you! I promise! xoxo- Chelle

I just love my dog!! I took this picture the other day hehe he is too cute!

Tuesday, May 13, 2014

Keep Movin'

I have experienced pain at it's best the past 48 hours from Endometriosis. However that is not what I want to talk about today... Have you ever ran into a person who has judged you for being sick? Surely if you are chronically ill you know what I am talking about... I was just thinking about this topic the other day and if someone is judging you for your illness... it is THERE problem! You are so much more amazing then they could ever know and I hope you have the courage to just keep on going because you are way worth it! I think it is shameful for another person to consider someone else's illness as a flaw... it is the opposite it is a beautiful strength that comes from humility, faith, endurance.... never apologize for your aliments! There is nothing to ever be sorry  for! I hope you have a good day and I totally believe in you and hope for the best for you, xoxo- Chelle

Monday, May 12, 2014

Inspiring Woman

I so needed to watch this video after my long painful night last night. So painful I couldn't sleep and the pain is still here and I know will be here for at least a few days... This pain is due to my Endometriosis, sometimes the pain can be unbearable but I know it is not permanent! I can keep on going because the sun will shine again. I feel so blessed, I know these hardships are building me into a better me :) last night I was upset and the song Beautiful Heartbreak by Hilary Weeks popped into my head and my misery turned into gratefulness. The lyrics go "I had it all mapped out in front of me knew just where I wanted to go. But life decided to change my plans and I found a mountain in the middle of my road. I knew there was no way to move it so I searched for a way around, broken hearted I started climbing and at the top I found, every fear every doubt all the pain I went through was the price that I paid to see this few and now that I'm here I would never trade the peace that I feel and the faith that I find through the bittersweet tears and the sleepless nights. I used to pray he'd take it all away but until it became a beautiful heartbreak."
below is a link to an amazing, inspiring woman with an powerful story! She is a wonderful reminder of what positivity can do, as well as choosing to be happy... I myself believe you can choose to be happy in times of darkness or struggle, those happy times are there!

you can find her at:  I know I will be following her!

Sunday, May 11, 2014

Where I Am

How am I dealing with my new diagnosis of Postural Orthostatic Tachycardia Syndrome/Dysautonomia and Mass cell activation....Well as I have hope and faith for healing, I can not help but to be nervous and anxious.... my brain has had time for the "bad thoughts" to kick in... I wish I could find that little switch in my brain and turn those thoughts off... I know it is because I have been here before, staring a new diagnosis in the face thinking this is it! and I will now get better... then months later get no where... my neurologist was very thorough and positive so that does give me hope and he did prove to me that I do in fact have proof of these diagnoses.... he even stated that I will not get worse if I do my treatment (which I am) and it will be a long process...this treatment seems insane but I know it makes sense... 4 times the regular amount of zyretec/allegra, a mass cell suppressant, and  another medication to get those cells to stop... This medication adjustment is a big one my body is angry and I can tell it is helping but wow I think my body is in system shock overload on this stuff... tonight I am sick just do not feel good worried/ anxious, nauseated, hot and cold, and then there are moments when I feel like I can not breathe ... I know some of this is anxiety but I also know some is in fact my symptoms... my brain feels like scrambled eggs... I just have to be faithful and prayers are what is keeping me together right now... I have to put my faith in gear! My father in heaven loves me and is with me and he will heal me again, I just wish my nerves would settle down and listen to my heart. My heart is right, D&C: 84:88 "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." this is true this is oh so true and I know it! I have my angels up in heaven helping me, making me stronger and comforting me when I need it! I am so thankful for the gospel and the restoration of this church. I don't know where i'd be with out it but I do know it would not be good. That's for sure! It is the best part of everything in this life. I feel my savior's love in this challenging time for me and I know he is understanding of my feelings.
P.S I am soo sore from literally a minute of pedaling in a chair... I knew my body was weak but staring reality in the face is scary... I can only wait for the day to come when I have my body back again In working condition... faith, & patience! I pray for your healings of your afflictions from the bottom of my heart! XOXO- Chelle
"Come what may and LOVE IT."- Elder Joseph B Wirthlin

Saturday, May 10, 2014


Friends I share this in hopes that more people will be able to see this and donate to a precious girl... She is a sweetheart and anything would definitely help! If you can fund her please do, She is fighting for her life, every child deserves a life! please pray for her! xoxo-Chelle

Friday, May 9, 2014


I am officially diagnosed with Postural Orthostatic Tachycardia Syndrome... I also have Mass Cell Activation...which means my mass cells are super over producing so they put me on several medications for that... lots of antihistamines and some other things I am not quite sure what are haha I am nervous/excited to hopefully be on the road to getting better! 1/3 of POTS patients have mass cell problems... I am always on those lucky fractions hahaha hope you're weekend is blessed and Happy Mother's day Mothers! My Mom is my best friend and biggest supporter lots of love -Chelle

Thursday, May 8, 2014

Back to the Doctor

well in the Morning back to the neurologist 4 hours there and 4 hours home... Should be a very long painful day traveling is awful to me.... I had a very bad day health wise today dizziness, fatigue So bad I got up to make a salad, washed the lettuce and had to sit back down...pains everywhere, intense shaking, sensitive to anything, bad migraine, brain fog...nausea, the list goes on and on and have had a bad night too. That being said  I am looking forward to seeing a doctor and praying for help and guidance... Prayers work! I just need to breathe and be patient. I know he believes me but I am still afraid he wont believe me, (doc)I know that makes no sense but so many doctors have quit me... I am going to put this in the lords hands... I can do this!

I can do this

I am glad to announce after a lot of Clobatesol (a strong cream for Lichen Planus) My fingers are feeling much better! I feel like my finger nails are paper thin though... my remedy for that lots of layers of nail polish... I just woke up to a rainy day and I am super happy about it! I love the rain especially the smell of rain and we have not gotten very much moisture this year... So I am very thankful for this rain! I have decided no matter what happens with my health I will continue pushing ahead forward for that is the only way I will ever overcome these obstacles ... If I quit I won't ever get anywhere and if I am always thinking "why my" or " I wish" ... I won't be able to enjoy the good things even is the dark times there is goodness and then I will miss out on my good times.... being negative at this point won't do my any good! I have what I have, I can not change that.... now I am not saying I will never have bad days, those will come and I will go through my bad days but mark my word my hope and continuing of moving forward will never cease.

Wednesday, May 7, 2014

Burning Flaming Skin!

My hands are on fire! I have Lichen Planus and until now have been very blessed to not have it too rough... my thumbs and certain other fingers are on fire, my hands have places that feel the same ow-ie... I am typing with 3 fingers haha and surprising myself how good I am at it wink wink! under ,y fingernails and around them are just literally on fire!
 CAn you see the redness on my skin???
 IF you look towards the tip I actually am loosing skin its just flaking off leaving a white ring (doesn't look too bad I know but it burns)
if you look around the finger nail you can see redness and white lacing... the finger nail itself is actually lifting gross huh my finger nail feels like it's falling off (can't see the lifting)


Hi guys! today I am just telling myself to keep going. I am not my diseases! I am Michelle! that's what I keep chanting to myself today to keep me motivated I guess you could say?... I am tired and I feel like I can't breath and my body is just untimely unhappy with its bad self. I took a trip to the store to buy a few ingredients for salsa...that being said due to my brain fog I do not have all the ingredients for salsa... I even made a list... went over the list several times.... I still didn't even catch it until, of course when I returned home totally worn out.... now I am just frustrated. So now I am in a huge debate with myself of should I go back to the store or should I call it a day and try again tomorrow....On the bright side I went to the store! YAY me! for going to the store that's kinda a big deal to chronically ill people we tend to not be able to do simple things so I always celebrate my little victories! Go Me!

Tuesday, May 6, 2014

Medi Update POTS diet

Medi Update: Today I actually woke myself up due to shakiness. I have been shaking since the second I woke this morning... I ate a high salt breakfast, and took a salt tab thinking I didn't have enough sodium and that was causing my shaking I also have gotten about 26 fl oz in in the past 2 hours ... I try to get 70-80 plus fl oz. in one day... Sodium I try getting 10,000mg a day but have yet to do so I have just barley came across salt tabs...(because I do not think you can get that much salt by eating) and believe me I am sick of eating sooo much food all day long for salt... I love food and eating but it's a lot... I am still shaking I also put my support hose on and walked around got a teeny bit of cardio in (my pelvis is paying the price for that) My body loves it when I move around even though it fights it and I tend to get dizzy I still can tell my body is like thank you... I am relaxing a lot today last night the fatigue and not feeling good hit me pretty good and I knew then today was not going to be a good day and I tend to be able to tell when I am going down... The salt/fluid diet is helping however not nearly enough so I am anxious to see neurologist Friday... praying he can do more for me and I can eventually go into remission... I know however I may never go into remission but I am just going to keep fighting! I feel spacy today and like my brain is on vacation I see a lot of spots (you know like when the flash on a camera makes you see spots after a picture) well I do that for no reason and today am doing so a lot... I am having a struggle typing today but feel it's important for me to blog soo blog on I will :)  still loving my ginormous pill calendar! I am also using NUUN electrolyte tablets (one day day) love em! I have had a lichen Planus flare for 3 weeks and counting it is being out of hand! I have it all over my chest, face, in may hair it is totally gross and hurts. This is the worst Lichen Planus flare I have yet to have. boo! below are salt tabs... So if you need salt only* due to a medical condition* I suggest these they do not make me ill knock on wood... have been using them for a few days now... each tablet contains 452 mg sodium chloride and also 15 mg potassium! ooh I also adore V8 drink its a fluid and a good source or sodium! and a vegie serving!

Where We Are

I have strong faith right now and I feel very close to God and that he and my redeemer are with me... and even though things are very scary and feel out of control, I know everything will all be okay... That being said for some reason I just am struggling with what I may have to face or not face ... I  don't know what is going to happen to me... but I also realize not one person on this earth knows what is going to happen tomorrow, or in a week, month, year, five years, ten years, ect. Not a single one of us knows it is a part of life and we obviously aren't meant to know or we would, I think that's part of the test or the trial, If we knew what was ahead of us would we all continue... at first I was thinking no way but then it occurred to me again yes we would! because good things are to come just because we are in the middle of a storm we don't know when it will end and then the sun will shine and the beautifulness of good times will be with us and the good always out ways the bad. Life is good... it may have it's twists and turns but we are the ones that have to find that sunshine for we all know the sun will shine again... Life is such a gift and we have to make difficult choices sometimes but good times are here and now, even in the frustration or confusion, You can choose goodness to come from it and remember in your heart that sun will always shine again and we will have such a higher appreciation for that sunshine for every storm we pass through. I hope you all are having a blessed day! xoxo- Chelle

Sunday, May 4, 2014

Mountains to Climb - Henry B. Eyring - April 2012 General Conference

This is my all time favorite talk I can remember the first time I listened to this years ago it brought tears to my eyes just as these words put the spirit I my heart and my eyes again filled with the same tears of gratitude and filled my heart with God's Love, The knowledge of my redeemer, and made all the bad things seem okay for I knew the truths of this talk and still do...  AS I end this trying week I so needed to hear this it has two of my favorite scripture quotes one hangs on my wall and another on my shelf in my room as a constant reminder ,"Fear not what man can do for God shall be with you for ever and ever." D&C 122:9 and " 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." -D&C 84: 88:

Look to God and Live - Thomas S. Monson - April 1998 General Conference

Saturday, May 3, 2014

Oh My Goodness, I am Finally Home!

Hi Strangers! So I am going to knock out the bad part of my last few days, simply because I do Not want to end this on a bad note. :) I saw a doctor this past week who treated me as mean as I have ever been treated in my life... not only did she pretty much call me every bad, evil thing a medical professional could call me but she did it until I actually just cried. By the time I left in about maybe an hour, I was heart-broken, crushed, my hope was lost, I felt scared, alone, nervous, I think I experienced about every awful feeling there is for a good hour and a half. But luckily I am blessed with a wonderful mother who knows me and helps me to keep things balanced in life. I will not lie tears flowed for a good hour (if not longer.) This medical professional called me "anorexic bulimic",(I do not find shame in these diseases whoa wait! Hold the phone I am not saying I agree with this if you are hurting your body please stop and get medical help if needed, my heart goes out to you for those are true diseases...but when it is so far from what is wrong with you and you are truly ill for years, with unknown symptoms it hurts) basically called me crazy, that "I wanted attention", that "I needed to stop wasting my parents money & putting them into further debt", that "I needed to quit going to doctors and getting tests", and ended with "you have been abused it just simply has not come to surface yet." ALL THESE ACUSATIONS ARE 100% FALSE. She also does not believe In Postural Orthostatic Tachycardia Syndrome or any other Autonomic Dysfunction... She said my Neurologist was basically an idiot and there was NO scientific proof of these disorders they are all psychological... I do not believe a word she said oh and also diagnostic testing of the Gallbladder is a money maker they should never be removed and in her notes I did not have any symptom relief after gallbladder removal years ago (also not true I felt much better) I set her straight on a few wrong comments, when I realized I could not do one thing to change this person's mind it was clearly already set and very small minded. She told me the other doctors I had seen the past few months also felt my sickness is all psychological. (which I believed, until a few hours later I realized she was lying to me) ... if they did not believe me would they be testing further for Dysautonomia?? NO, they would not they would have sent me home. Would they put me on a 10,000mg a day salt diet (with fluid intake) No, they would never, ever do that....When I returned home to my computer I got onto my patient portal and found my notes from ALL physicians... The Rheumatologist, Neurologist, and Cardiologist (the other doctors who agreed I was crazy) Simply did not think that at all... it was listed I  had anxiety (which I do) and have been diagnosed with Panic Disorder (which I have)...(most POTS patients are wrongly diagnosed with an anxiety disorder before proper diagnosis of Dysautonomia) bottom line I want to share this ugly story because you my friends know your body! And you also know when you are and are not ill! Please, I believe In psychological issues and know they are very true but I also know that isn't why I am ill... and if you know it deep in your heart... you aren't either, You only know you! I see a Psychiatrist and a Psychologist and I am not ashamed and also I do not believe CRAZY exists... I do believe in health problems one deserves to be labeled as crazy. I believe in you! Keep going, fight that fight! GOOD NEWS: my heart has been reviewed by a Cardiologist (again) I have no structural problems with my heart, he does not think I am crazy, he does think I am ill and probably with POTS. I am not thrilled with the fact I probably have POTS but I am happy doctors still believe in me and there is a reason for this awful craziness (my symptoms may be crazy & weird but I however am not!) I did have some very unusual hearing loss that made no real since and was also "weird" (feelings not hurt by being called weird, no harm in weird symptoms) neuro. will review it and go from there... That's the past few days and I am worn out!! being sick is so hard! if you are ill, I believe in healing, I believe in miracles, Jesus loves you and God loves you! I prayed and prayed the following day for goods news and no more doctors being mean. I got what I prayed for! My Cardiologist was truly god sent to me... He was soo kind and wonderful! and I could tell thorough, and smart!  Trials build us up to be the strongest... we wouldn't be with out them that strong for no one would go through hard things on our own... the teacher has to push us sometimes to find our greater purpose:) Lots of Love, you can do it xoxo - Chelle