No Way! You Don't Do that.?

I was so happy last Sunday when I got to go to church! I have been very ill. So ill going to an hour of sacrament meeting was just too much for me. I know an hour doesn't seem like a long time but mix it up with Dysautonomia/POTS and a slew of other things with no diagnosis and an hour can be very long. Stopping going places comes with the mean  territory of sickness.When I stopped going every week to church I prayed to be able to go. I prayed about how guilty I felt. I felt like wow I can' t go to church I must really be letting Heavenly Father down. And of course, there was a lot of confusion. Why when I was trying to be so obedient... Why could I not get  the health to attend?? Some time later I learned that it wasn't a punishment of any sort it did not reflect my righteousness, my trying. And one night I was praying and I apologized again and the Lord let me know that he understood. He always has understood and he let me know I no longer needed to carry that guilt around nor, be sorry. Not being able to attend church like I wanted has been a trial all in it's own. Some people can judge and think how awful I am but I still keep my values, I study scriptures often and walk in the ways the Lord wants me. Church is important in all religions but going to church is not what makes you a member. Living it, experiencing it, making your life it, those are the things that the lord wants us to do! (he wants us to go to church too) this is in NO way me saying not to go to church or any such thing. Church is a wonderful blessing and I hope to be able to go next week and every week after that!  Church is a wonderful thing to attend and we should! I sure miss it and when my grandma walked in and saw me she lit up. (we used to go together before I was so ill)  I don't think I will ever forget it. a wonderful spiritual reflecting on the importance of family special moment. Cherish the small things as much as the large for I bet those small things are much greater <3-Chelle

Tubes.

Yesterday night, I received my first bag of TPN (total parenteral nutrition) through my PICC line,due to my newest diagnosis of gastroparesis. (after vomiting for months straight) Friday I received half a hospital in a few boxes and a large bag haha. (home health) I have to say it is weird, foreign having a tube sticking out of me. But if this tube makes me feel better we can definitely learn to be friends! My family has worried faces, but I don't I know heavenly father is helping me. I know he is behind everything. I prayed for help and I received help. He may not move our mountains to climb but he can hold our hands on the way up.  I am hooked up to bag two... let's hope for more nutrition and happier body!-Chelle

PICC Line Placement & Giving It All To Him.

This is my new Penny the Picc Line.

When you put your problems in the lords hands and trust fully in him. Any burden can be made so much lighter. Now I am not saying that the Lord is going to just erase our burdens. (because I am a  firm believer that everything happens for a reason and that trials bring the biggest blessings in life.) My struggles recently have been pacing myself, being impatient, and trusting 100% in the My Savior Jesus Christ. Now that does not mean I didn't have faith, that  I didn't believe, that I didn't know. I simply was holding onto a piece of my burden no matter what. I tried to let it go but me just being me couldn't. I know the lord can take our burdens away and make the load not so heavy in the midst of horrible storms in life. What I also know... you have to let him. We have to give the burden to him. So. I started praying, first for what I needed in my life (that I would know what I needed to work on within myself. because I was not fully sure). Then I listened, that was a little hard for me. I did not want to be patient. I really did not want to pace myself. But those 2 things oddly are what I needed to help redirect my life to let the lord have my burdens to lighten my load. First I started with patience, taking a deep breath, being aware, correcting the problem so to speak. Then I started pacing myself (because I go from 0 to 60) and even in the littlest tasks I found myself needing to slow down. Who was I racing for? and I mean everything I did I caught myself going as fast as possible. It weakened me. And I am pretty sure being sick has made that worse... trying to get what I can done When I can. But it was fueling my crazy dysfunctional autonomic nervous system. I was throwing matches to the fire. (no this is not a cure to my dysfunction) but I know it helps. Getting worked up, stressed out is any sick person's enemy. I wasn't trying to get all worked up it was just what was happening like a bad habit. Oh wait! it is a bad habit! And I am not saying I don't still have that habit... but I am working on it and making improvements that are changing my life for the better. Being sick is hard. I freak out a lot. I get very scared of the unknown. But these new changes are helping me cope. My world is brighter, lighter, I find peace. I know it is because of Jesus Christ who is leading me, guiding me, varying me through this rough time. But to have peace today while getting my PICC line placed and learning home health is coming to my house and I am going to have TPN (total parenteral nutrition) through this PICC. Because my stomach is paralyzed due to my dysautonomia.....Yes, fear is there but I know my Heavenly father is there. He is guiding me pushing me, helping me. He has a plan for me eternal and beyond this sickly life... but the sick  part is teaching me more then I could probably ever know.

This is my other arm bruised and battered from countless Iv's from IV Therapy (prior to getting a picc and new treatments)

Patience and Pacing.

The other night I had one of those "ah-ha" moments! I realized I get myself all worked up about nothing sometimes and I rush like crazy. I had been praying and that particular night I was reminded to pace myself. I thought pace myself? Since then, of course I have been paying more attention to my habits and sure enough I have a horrible problem with hurrying and getting all in a tizzy. My other biggest weakness...worry...and impatience. So I have been trying to change these things and just be a better me. Heavenly Father wants me to be more calm and pace myself. Now just being mindful about the problem helps me to realize when I am doing this so I can reverse my actions. But my biggest tool is a timer or an alarm. From being sick for so long I have lost that internal clock thing... I never can tell how long anything has been. I always need a clock. Also while doing tasks I seem to take a really long time for some reason. Now what have i done this week to help me with this? I set my alarm to a few minutes before i need to move on to my next task or leave. It keeps me calmer because then I am not rushing.  which in turn has given me more patience. Which has lead to more peacefulness and patience in my life. This picture was on Facebook today I just know the depths of these truths and i had to share. Listen to those instincts and instructions. xo-Chelle

Sometimes I can't.

Saturday I was woken by my mother asking if I wanted to go to Flagstaff 2 hours away with my sister and her... to shop... My first half asleep answer, "yes." as I went back to sleep. ( I have a hard time waking partly medicated, partly chronically sick, partly can't eat.) I think about an hour later I was still going. I knew the second time my mother asked I was not going to be attending yet another wonderful memory time with my sister and mom. Once I woke a little I thought in my head "there is no way Michelle." I wanted to whisk it away and play super me and get up and be fine or at least pretend I was ok... But the truth of it was I could simply not shower, pack food for the day I could eat, get ready for the day, travel for 2 hours, shop (that alone I never do), with no way to lay down and rest, and then drive back home. no way, a horrible gut wrenching no way. A punch of reality that quiet frankly I hate! I used to do all those things. Now, I am lucky to get one of those things done in a day. That one day was like a solid weeks worth of things to do. This body I live in now just does not have any sympathy for what I want to do. My mom felt bad and guilty all day (which I hate!) I hate others especially my mom feels bad to leave me for a day. I was sad when I finally woke up the final time to the empty house. again. My heart just sank to my feet & I was quickly feeling very low. I had a good prayer followed by a good cry. I think to myself often, "How did this happen to me?" "where is my life at?" I have a life it just isn't everyone else's terms of "normal". I could feel my force of heavenly love around me that morning. I was truly not alone I surely was accompanies by lots of special sweet angels. (The scriptures promise that ya know?) :) Luckily to my surprise that day the movie The Notebook was on TV! yay! when you watch a lot of TV being sick you get super happy when a good movie comes on. Especially your favorite!! So I watched Ally and Noah. (I am particularly fond of Ally because she has red hair and red heads rock) every time I watch that movie I love that era, and one thing I find I am really fond of is the music! love me some Billie Holiday! Is that weird? I like Jazz from the 30's?? I am listening to it now and something about it just makes me happy and my heart tick. I suggest it for any gloomy day. I have always loved this music but I think as time goes forward my love for it grows. If you are having a rough day watch The Notebook and listen to some good music. There, that's my prescription for you! My mom and sister returned bearing gifts and I have to say it was sweet <3 life gives us lemons but we just have to deal and have faith in our circumstances. Do the best we can with what we have. Remember no matter what God loves you, Jesus Loves you, and there is a whole army of angels with you when you walk in faith! And I am positive lots of people here on earth love you too! Lots of Love! xoxo-Chelle..."I'll be seeing you, in all the old familiar places this heart of mine embraces all day and through"

I Know that my Redeemer Lives

I am so grateful for the knowledge of the resurrection. I am grateful for the plan of salvation. Though life gets hard at times, and that's to be expected. I know I will be okay. In the darkest, deepest, hardest, of times I can strive to live and be better. With the knowledge that My Heavenly father loves me. I am so lucky because I know one day I will get to live with him in heaven for all eternity. Yes, being chronically ill with such a mean neurological disease is a trial for sure, something awful to endure. I know though one day I will have a perfect body. All these ailments, miseries, weaknesses will be gone. I will be whole again! Isn't that knowledge just such a wonderful thing! Here on earth I can take comfort in my Heavenly Father in just times... last night I was listening to a podcast by Meg Johnson (if you haven't gone to her blog, do it! she is amazing! Her podcast are way awesome!) She spoke about Job, and told a story about herself... in her story she was  having a rough time and prayed. She also quoted words from 'I know that my redeemer lives' this struck me, Those words! I have heard the song and sung it in church a various number of times. But I did not know the words! So last night I looked the lyrics up and wrote them down and they are beautiful and so truthful. The part of the song that really comforted me. A short time later I was feeling very sickly and weak A.K.A. "POTSY" A term people with Postural Orthostatic Tachycardia syndrome seem to use when ill. Normally I get sad, mad, frustrated, anxious. Last night I did not I clung to my Savior's truths! I found a great strength and comfort there. (I know I was suppose to hear these words last night, my Heavenly Father wanted me to hear them, Blessing!) 

 "He lives to comfort me when faint.

He lives to hear my Soul's complaint.

He lives to silence all my fears.

 He lives to wipe away my tears.

He lives to calm my troubled heart.

He lives All blessings to impart.'

Aren't those words so beautiful, how true they are <3

Lots of Love-Chelle.

 

Food is a blessing.

What I would do for some food... food is such a blessing, eating is a blessing as well. cherish it! I haven't been eating well for months and I am now on a liquid diet for a few weeks in hope I can get in my calories and protein. I can't eat now without vomiting and that is from my stomach working slowly. Therefore, I must eat this way to digest and hopefully feel better. I would do just about anything for a pizza right now or a brownie. missing foods is hard because even though I am sick...I am still hungry, I still have an appetite. I have to say it is a very weird and hard thing to go through! Dysautonomia is mean!
This makes me think of the starving families out there and I hope they get their bellies filled. <3

Still Puking. Red Hands. & Dysautonomia

Dysautonomia is MEAN! to raise more awareness I will write about how Dysautonomia is effecting me today. I will start with slow digestion (or slowed motility) and then I am vomiting/nauseated which entails anti-nausea medications which messed with my heart rate. My tummy hurts to... oh wait back to that heart rate my heart rate is high when I stand or sit up due to dysautonomia so you can bet adding those anti-nausea pills really Hurt me. I am also suffering from low blood volume due to low fluids and not being able to get in ten THOUSAND mg of salt a day due to the constant nausea/vomiting. This results in headaches, fatigue, shakiness, dizziness. I also have pulling into my limbs (blood pulling resulting in red swollen hands today. I can not even bend over today or I will feel worse. my tummy is my biggest enemy today! I also have suffered great brain fog today but that is my new normal. And today I got in an IV  which helps my POTS/dysautonomia. not complaining here...raising awareness!-Chelle

red hurting hands!

Wanna Vote for me?? facebookers??

This is the picture I entered into the contest. #DysautonomiaAwareness

If you are a Facebooker... I have entered a photo contest through Facebook it will end Friday the 17th, until then you can go to this link (if you are a facebooker) and be sure to LIKE & SHARE it! it is the same picture as the back ground of my blog this month I  am trying to raise awareness for Dysautonomia. I too suffer from dysautonomia. Just having a little fun with this photo competition :) https://www.facebook.com/DysautonomiaFoundation/photos/a.304948549694407.1073741848.139719442883986/306165126239416/?type=1&theater

if you would like to VOTE go to Dysautonomia Foundation Facebook page.https://www.facebook.com/DysautonomiaFoundation?fref=photo
(if on a computer) Directions:to vote go to Dysautonomia Foundation Face book page and on the left side click "dysautonomia photo contest". then when that page comes up view the photos click the vote button on my photo and it will vote 

(if on tablet or phone) Directions: 1. go to Dysautonomia Foundation 2. Go down there news feed 3. under my photo is a link "join our photo challenge", click it 4. at top of that right of that page it says vote click vote then scroll down and my photo will be in the list of photos. click vote on my photo.

ALSO WHILE YOU ARE THERE BE SURE TO CHECK THEM OUT AND LEARN MORE ABOUT DYSAUTONOMIA!!!!!!!!!!!!! #dysautonomiaAwareness

Yesterday

Yesterday was rough to say the least. I started to write this post and then decided I needed to sleep. This morning when I got onto my laptop I read the wrods, "Today was quiet the day." it truly was rough waking up at 5 in the morning, to make it to my 8 A.M. appointment with the dietician. I am now on a liquid diet at least for the next few weeks. I have to get 1300-1600 calories a day. eat low fat and low fiber foods only and 54-65g of protein a day. (plus 10,000mg sodium for my POTS) The dietician put me on a severe Gastroparesis diet. She also said if I could not do this I'd end up with a  feeding tube. YIKES! I came to find out later that day from my Gastroenterologist that, that was not true. My tummy is not working up to speed it is very slow. And my Small bowel is really slow. This is all caused from my dysautonomia. now I thought and still keep finding some very reliable information that slowed motility and precisely if you have a gastric emptying test and at 4 hours your test showed 10% of the meal left in the stomach, then you have gastroparesis. . . I tested at 4 hours 15% was left in my stomach so I am very confused because my gastroenterologist said I do not have Gastroparesis. lots of headaches yesterday and confusion. I'm still very confused. Last night I layed it all on the table after a long upsetting day and I prayed to My Father in Heaven and just really gave him all my problems and worries and frustrations. I was very blessed last night to have my burden carried he simply let me relax, he gave me peace. He didn't take my problems away but he did in fact make the burden much easier to carry. Pray is important. No matter how you are feeling the Lord wants to hear from you. He wants to be there for you always. I hope you all are having a lovely day, lots of love-Chelle

A Simple Tuesday.

Wasn't Conference Great!!

Yesterday reality hit and I felt sad all day...  Today I felt sad because what I used to do when I was sad or anything was bake. It was therapeutic for me! Now that I can barley eat... and with how sickly I have been baking is HARD. REALLY HARD! Today though I was determined to bring back a piece of myself. I was looking up recipes online that are okay for me to eat. I had about 1/4 of a pediasure and sure enough I threw it up. That did put a kink in my plan and I was sad once again. So I rested, recharged, & got my Jackie Chan on! I did the task of baking and I did very much enjoy it!! <3 and I felt alive all over again!
These "muffins" are bland and I mean they have no taste to them a little bit like cardboard. but I am still happy! my new diet is going to be a challenge and I will learn more this Friday!

Friday! Just One Day Away!

Are you ready for Conference tomorrow??!! I AM!!

today in IV therapy figured I would make some more Awareness for dysautonomia!

More in Depth.

So, I just finished my last blog post and I just have such a happy heart and I recently posted I was down and struggling with the realities of being so chronically ill...I wanted to touch on this subject more clearly. I have been undergoing treatments and not getting a lot of help or relief. I just last week had a gastric emptying study to see if  my stomach is paralyzed. I have been vomiting about daily since early August. lots of things going on. In the mist of all this I fell into a low. I didn't feel like I had any value anymore. it was as if every treatment failed every symptom chiseled away at me and I felt I had nothing left but sick. I was sick. Michelle was gone. I did not know what to do. I felt angry and crabby (I won't lie) aside from being constantly afraid of everything and sad. Now I do realize this is part of the grieving process I am going through upon these very life altering diagnoses...and it's okay. I started however to quit practice the use of my tools in life. I didn't read my scriptures nightly and I hardened my heart a little bit (not a proud thing to admit) but I did do one thing... I continued to pray. I felt empty inside and lost. I felt alone. One thing I did know during this time... God was there and Jesus Christ was there for me too as they always are and always have been! I knew if I continued praying everything would be okay in some way. That I could feel in my broken heart. I was right. through the high's and Lows of this lengthy process I still am going through it was like someone turned on my light switch. My prayers were being answered I just wasn't paying full attention. I listened to the general Women's meeting last weekend. I was in a low and I listened anyways by the end of it I  found myself writing down, "I am eating my vegetables." As Elder Holland spoke on life and sometimes we just have to grit down and eat our vegetables...that is where I am at in my life I am simply "Eating my vegetables." I ended up putting that note on my dresser where I stare at it as I wake up in the morning and when going to sleep at night. It helps keep me on track. and I know I will not be forever eating my vegetables and there will  be better days ahead. Also the talk of our bodies being temples and how temples light the darkness and bring forth goodness... I have pondered that all week about how I am a temple and I need to set a Christ like example to the world. Not just because "I should" but because I needed to! When I started to practice my Christ like examples. I caught myself smiling at others more and being more polite, more reverent, I started thinking of others, and I found myself being filled with happiness. It has literally led to a spark inside of me that  I feel glows! I am so blessed and I know it, my heavenly father is so knowledgeable of what I am encountering and going through and how I feel and even when I am a "little brat" and throwing my fits or feeling completely sad and worthless he is there with me and he understands all my negative emotions. I feel like the talks I have listened to were just for me. He is there and he loves you no matter what! You can come unto him, lean on him, and  repent... and he is there with the biggest loving arms! He loves us, each and every one I can testify to this! I find myself having self worth again. Michelle exists again and it's all because I followed Christ like love and instead of giving I ended up receiving such wonderful Christ like love <3 Now because I have a much needed purpose on this earth and because I have something to give always (even if I am sick, in my P.J's, with no makeup) I am posting a quick snap shot. Keep moving forward in the depths of your storm. Cling to the arms of your heavenly father to guide the way and I promise you will never fail or become astray <3 lots of love!!-Chelle

"Each one of us is glorious"-taken from the song Glorious by David Archuleta.

Meet the Mormons!

Have you heard about the new documentary Meet the Mormons??? It is coming to a theater near you! yes you! This is a movie about well Mormons A.K.A The Church of Jesus Christ of Latter day Saints. You may also have hear the term or name LDS. THIS MOVIE IS IN NO WAY A FORM OF CONVERSION OR MENT FOR THAT USE, THERE WILL BE NO MISSIONARIES PRESENT*** The sole purpose of this is to give you a chance to see what Mormonism is all about...it is to show who we are and what we do and our beliefs... and how they fit in our life's. This presentation will have members from all over the world with different stories and life's. So if you are curious grab a friend... all if fails, and you don't like it... you will at least have comfort knowing the church will be making NO. ZIP.ZERO. profits from this film...ALL PROCEEDS WILL BE GOING TO A CHARITY!!! 100% OF THE PROCEED TO CHARITY! So, if this sparks your curiosity and you are able and feel like attending #meetthemormons comes out on October 10th. If you are a member and feel like going go! but it is in no way a 'have to' event! here is a link for more info!  http://meetthemormons.com/#show-trailer?cid=118  #meetthemormons.
P.S. On Facebook today I downloaded the song Glorious by #davidarchuleta today for FREE... he wrote this song for the film plus it is a beautiful song! So go to Meet the Mormons Facebook page if you want to know more about the song and the film!!
           I am feeling so much better (mentally) my body still is very unhappy and chronically ill but my cheer is back and I feel great! (and honestly can say it is 100% due to my faith in the Church A.K.A God and My savior, Jesus Christ! and the General Women's Meeting! I definitely am thankful for this upcoming General Conference! time to soak up some spiritual goodness and guidance :) I am a true believer we all each and every one of us have a purpose here on this earth! Yes, I am not perfect and life gets me down at times but with the knowledge of my Savior and loving Father in heaven, I can get through the bad...trials truly bring the biggest blessing and I am saying this from the very bottom of my heart...it is a knowledge I have gained in this life <3 Don't get discouraged. It will all work out whatever you are facing via illness or a dispute with a family member or friend, a bad day, ect... lots of love -Chelle

Dysautonomia Awarness Month!!

As I sit in IV Therapy I figured what better time to post this....(today is a rough one)
Today is October 1st. October is Dysautonomia Awareness Month. Something I hold near to my heart. I suffer from Dysautonomia. I have had Dysautonomia for roughly 8 years but due to this condition being very little know in the medical world... it took 8 years to find a proper diagnosis.(each year without a diagnosis dysautonomia worsens.) And still even with a diagnosis I am far from being well. Dysautonomia is MY reality. Dysautonomia is when the Autonomic Nervous System ...malfunctions causing all kind of different problems. For instance anything the body does automatically is controlled by the Autonomic Nervous system. so things like digesting food, heart rate, breathing those are all controlled by the autonomic nervous system. This neurological condition causes my body all sorts of havoc.. Dysautonomia is little known, some say it's rare but one thing i know is this Condition i live with everyday has little research, Very few doctors even know what this is, I can easily walk into any hospital or doctor's office and no one will know what dysautonomia is, it makes me wonder how many are suffering from such a very real awful disease and receiving no help. Could you imagine what it would be like to go to your doctor and him not knowing what you have wrong with you! That is why awareness is crucial for this disease! Doctors need to know! and better treatments need to be found for patients, so we can have better quality of life, besides doctors offices and hospital beds. We live everyday not knowing how and when... or really I should say how bad our symptoms will be. It's a surprise no one can predict. Cures need to be found! For more information or to donate, (there are a few different ways of awareness this year and supporting Dysautonomia, such as 'tying one on' (a very cute knot bracelet) http://www.dysautonomiafoundation.org/ -Chelle

Check it out....http://www.dysautonomiainternational.org/donate