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!