Tuesday, September 23, 2014

The Bare Naked Truth.

As you all know, I have been very chronically ill. I am sure you noticed my posts have lessened. In the depths of the long agony being chronically sick has held me in (what feels like a never ending time capsule, that you can not get out of) I found myself with less to say, less to talk about, less to think. In some ways less to care. I have been feeling pretty lonely and afraid. Depression has sinked in some days. I however seem to have the relentlessness to always get back up and press forward. Some days I am scared stiff, literally it is excruciating. I have two things my mind focuses on 1. being sick, 2. what am I going to do about it. I finally found that last piece of the puzzle (or so I thought) in May getting diagnosed with Postural Orthostatic Tachycardia Syndrome/Dysautonomia. among other diagnoses. I felt I was going to be better, and have improvements. I kinda had a few days where ya hoo! I felt I was improving...and working my tail off to see that I did improve... but I haven't improved really, in the big scheme of things. I feel basically the same if not worse... I have no quality of life, I go to doctors, to IV therapy, to physical therapy, and repeat. I have a mean disease and it is pulling my every which way. I now am feeling confused by the fact that I am not seeing any real improvements, and that I still have very little quality of life. It scares the heck out of me! I won't lie. So part of me has been grieving the loss of an old dear friend, a little girl who thought she had the world in her hands. Had big dreams always on any given day. I will never get that little innocent girl back. Because I am now an adult. Being sick took her from me and I ended up in this warped mixed up nightmare. Now she is gone for good. But I do have a new adult friend trying to get things as messed up as they are, together again. Lots going on here. I am sure you can see. But it's real this is the raw part most people aren't going to tell you about what being sick does to them. They aren't going to come out and say I have anxiety like a 2 year old when my mom leaves for work. (however kept inside) Being sick has been the biggest nightmare in my life and I get the feeling I am in for the long haul. One thing I do know deep in my heart is this nightmare must be the biggest best blessing that has ever happened to me... Because I know trials bring those big wonderful bestest blessings. So trial I will, even though I really don't want to today. I will keep going to doctors and getting tests and being sick. I will continue to be dehydrated a lot have low blood volume, get IV's, have a very high heart rate, low or hi blood pressure, have migraines,have the worst pains throughout my whole body, have symptomatic anxiety, dry heave, vomit, deal with bowel issues, urinate frequently or a ton, deal with my weirdo eyes, deal with the weakness and fatigue, deal with a spasming pelvic floor, deal with the Endometriosis, Deal with the Lichen planus, Deal with the hypothyroidism, deal with the asthma, the Mast Cell Activation Disorder, Bronchiole pulmonary dysplasia, Joint Hypermobility & it's pain, ...and if the worry comes with that I will deal with it too because I am not alone in this journey! I have Jesus Christ by me guiding me, he is my rock and my savior. I have my Angels...Here on earth, My momma (number one) as well as the rest of my family. My heavenly ones as well. I have purpose. Through all this craziness I just wrote out...I mean this is my life... but it still is beautiful even through all the ugly... because I chose to come here and I chose to live this life and I have purpose! Each and everyone of us here on this earth have a purpose! We all have something to bring to the table. We are ALL one of a kind and special and God loves us, Jesus Christ Loves us and through them we can do anything! So, I guess I can do anything too! Even if for now it is just surviving one day at a time. xo-Chelle

P.S. Tomorrow morning I will be doing my gastric emptying study (24 hours of x-rays to see food move through my tummy and how fast ect.) now these results can tell me if I have gastro paresis so prayers are greatly appreciated as always.

Monday, September 22, 2014

Jealousy

Sometimes I get jealous, sure it's  not something anyone would want to admit. Nor do I. I do get jealous though... sometimes at home, with family, friends, strangers, people on TV, movies, in stores, in restaurants. It is not that I want anyone else to be unhappy or sick ever! I just find myself longing to be them. Wondering what it must be like, what life would be with out sickness. To have a body that works, instead of sickness that has wrapped its ugly thorns into my body and mind. It eats me up regularly and I have no control over what it does to me. I fight, but rarely ever win. So sometimes I long for "regular" people. I don't like however the jealousy that comes with it...I find myself mad at total strangers. I find myself asking, "Don't they all know there are sick people out there that can not do these things. And if they can manage to do these things, how hard it is on them.
Of course they don't, would have I? 8 years ago? NO. My anger isn't at them directly I think my anger is at myself, at the universe. But after my few moments of anger I have to remember I have a plan eternal. Though right now at this time in my life is not feeling rewarding in any way... One day I will have perfect happiness and a perfect body. I was not put on this earth just to be here and miserable.... I have purpose! I pray for all those afflicted with any health issue or sickness My being so sickly is a trial that is going to lead to bigger blessing. (and yours too!) <3 xoxo-Chelle

Wednesday, September 17, 2014

IV Therapy

 
 
Went to IV therapy my fluids take 2 hours to complete each time and the other day as well as today it took 3 hours (due to using smaller veins in my fingers and hands) My poor veins are ready to be left alone... I love IV therapy it helps my POTS!! wish it helped my tummy, that is still a mystery... Mayo moved my test to next week instead of tomorrow ...orders where wrong (by accident) I am still throwing up all the time... and most the time my tummy hurts to eat... little flustered. But I am trying... 1st IV appointment I was nervous and oddly I sat in the chair with the little angel tied to the iv pole above it... I noticed the angel about half way through. It was a sign that God was with my and so where my angels <3 I took some pictures today I sat in the monkey chair lol.



Yes I have all fingers in this picture lol just had hand curled up...

Saturday, September 13, 2014

September 12, 2014

Tonight has been particularly hard for me. I have been in battle for such a long time with my body, I just can't help but to not see a way out. All I do is get worse. I continue to find more symptoms when I feel there can't possibly find more. That is where I have to practice my faith in the atonement. God has a plan for me eternal, part of that plan is dying and going to heaven. ( I don't understand how I can be scared of going to heaven...it is like where we are all striving to go)...I am sure I am not withering away or going to die. I think it is a irrational fear ...well I think it is rationale at times, I go through so much... Nights like tonight I wonder how my tiny body could possibly go through anymore. How I can possibly go through anymore... Jesus Christ. Thanks my answer, he himself knows all my sufferings. Each and Every one. To. List; I hope my POTS calms down, My Dysautonomia calms down, my gastro awfulness calms down, my vomiting calms down, my urinary issues calm down, my pain calms down, my numbness calms down, my spasms calm down, my dilated burning eyes calm down, my hematomas on the fragile skin around my eyes calm down, my ache/rash thing calms down, my tachycardia calms down, my blood volume regulates, my sores from countless IV's calms down, my endometriosis pain calms down, my allergy symptoms calm down, my joint pain calms down, my fatigue and constant sleeping calms down, my insomnia calms down, my brain fog calms down, my lichen planus lesions calm down, my stomach cramps calm down, my anxiety calms down, my headaches calm down, my fear calms down, the endless pit of worry I hold calms down....That is what I live with. Every. Single. Day. I wonder how? The answer has never been so obvious through my Lord Jesus Christ. Here I have been sitting all night thinking about all that is wrong with me. How I will never have anything, do anything, be anything... how my body couldn't possibly take another day of this. I was the walking dead. No. I was none of these negative thoughts I was thinking. I am strong and I can do this... Because of Jesus Christ and his never ending love for me I have been able to do the amazing things I have....I have gotten through it with him and I will get through it with him.
 
I am sick. I am chronically sick. I am bad sick. Sure, there are  a lot of other people with worse things. but I have a huge plateful of symptoms and little success in treatment at the moment. This disease takes every ounce out of me. I fight. With My Savior by My side.

Thursday, September 11, 2014

Rembering September Eleventh

      First off I would like to say THANK YOU to all the truly AMAZING people who helped and responded to all of the Americans that awful day. The First responders, volunteers, ect. Also to all the victims afflicted on September eleventh, you are held dearly to my heart today as I ponder what you had to go through...the unimaginable. The heroes, the people who lost their lifes, the living, the wounded. My heart goes out to you and your families. I know the ones in heaven are probably way better off then we are here on earth up there being sweet angels but I can't imagine the burden of loosing a loved one on that horrible day. The awful memories and the hardships I am certain i can not even possibly imagine...The living are the afflicted as well. May peace be with you and fill your souls xo.
       After I graduated high school I got the opportunity to go to New York, New York and The capital. We visited ground Zero, There definitely was a strong spirit there present. And when I was there we went to the museum which amazed me with all the facts, and pictures, and treasures to see. Being right there made it real for me something that I couldn't grasp until that moment of physically being there. (since I was 8 when that occurred) The huge whole in the ground where the twin towers were shocked me and was just such an experience I can't fully explain. I will never forget walking down the side walk and imaging that day and seeing how close all the other building where. What hit me even harder... a lot of those close building were schools! Such an amazing and hard experience I will never forget. My gratitude grew that day for anyone involved in 9-11. When I visited the capital and the white house ...it still was strong in my mind .... but when I saw the memorial room in the pentagon I remember my eyes welling up. All the memorial benches... And while walking through the part of the pentagon that was hit...thinking about the amazing heroes on flight 93,  I can not imagine the courage it took. All around what happened that day was pure hell! Americans that day were American as ever. Brave. Honorable. I am PROUD to be an AMERICAN.I pray God be with you and you're families, xo.
         When I remember 9-11 I remember being a little girl. I remember we had the tv off that morning because my older sister had an orthodontist appointment. (we had to leave earlier). When we got to the orthodontist his wife (the receptionist) who we knew well because, my mother worked for the dentist next door... asked my mom about if she saw that one of the twin towers were hit by an airplane in New York. I sat there bored and thinking whatever there was an accident. I remember being confused. I also remember thinking that my mom and that lady were being too emotional about it (sorry mom haha) By the time I got to school we knew it was an attack... I remember being very frightened by that and apparently all the other kids were too because they kept asking if our school was going to get hit by an airplane. The teacher assured us that we lived in a pretty small town and she highly doubted that they would choose our school. I was still unsure about that part. I remember saying the pledge of allegiance you know like all American kids used to do (still should) and after we had a moment of silence. A scary day for Americans. May God bless the USA!



Tuesday, September 9, 2014

Update

Update: I went to Mayo Motility Clinic. I was in Mesa Yesterday A.M. in the crazy flooding rains! we stayed dry and safe...but I did miss my physical therapy :/ My new doctor thinks I could possibly have Cyclic Vomiting Syndrome, and is running a gastric emptying test (to test is my stomach is slowly working or if it is moving correctly.) Treating vomiting and migraines. I am still very nauseated and loosing weight. I will start regular IV fluids at a infusion clinic in my home town to help me stay hydrated. And also seeing a nutritionist.... We will see what is to come soonish I suppose my test is next week! I am home now and apologize for my slow and little postings.  Just am very sickly. God has a plan for me and I know it. I may not like being sick but there is a reason behind my having to endure this. I have a lot to learn. When life is too much to handle pray, he IS there <3 Lots of love-Chelle

This Mr. Wrecker is the best dog ever, xo

Thursday, September 4, 2014

Sleeping Scriptures

I did snap a picture so I could blog :)
Nights can be rough while enduring POTS Dysautonomia....
last night I was feeling spiritually moved and I didn't throw up so I was super excited.... I did have dry heaves for an hour! I am enduring my symptoms. My body is its own worse enemy. Now my stomach is not working properly, it hasn't for years...particularly the past year has been the worst. I have seen Gastroenterologists who simply did not know and one other well...she felt I was anorexic, seeking attention, wasting my parents good money on doctors and tests, and then abused (correction NONE OF THOSE ARE EVEN THE SLIGHTES BIT OF TRUTH!) She was not very kind... I have been waiting patiently to get into the Motility Clinic at Mayo since May... and the past few weeks I have been impatiently waiting. Throwing up is my new informal talent. I would like to return it... I am loosing weight and feeling weaker and weaker. I have started drinking Pedialyte sidekicks and they do help (when I don't hurl them up). last night and the past week I have felt the spirit so close to my heart and I have a drive that I know is only through my Heavenly Father. He is giving me the strength I pray for. He is literally carrying me and I know it! I read scriptures last night and wrote more in my book of faith. Then I was too tired to do anymore work and I just felt comforted by my scriptures. I did not want to put them away. It was a shield of any bad thing... I felt that... so I just held it close and when I woke up this morning ouch! it wasn't a very soft pillow haha I guess I fell asleep with it in my arms. I know my life has importance. I know I have work to do here. I just don't know what that is yet...am I doing it yet?? When will I know?? I don't have the answers to that part but I can wait. I will follow any plan God has for me <3
my permanent carried throw up bowl...because you never know... yuck.

Wednesday, September 3, 2014

Saved by Pediasure SideKicks.

Still vomiting daily...Lost 7 pounds in the past week... feeling very starving. My POTsy friends introduced me to pediasure sidekicks! I really like it so far and it is making me not so weak and weary. I am tough I can get through this just 5 more days until I go to Motility Clinic at Mayo praying for answers and help!! but I suggest these lil drinks if you need a boost! However, they are very pricy. I literally just got home from the store to get these... I was so weak and tired and of course all the handicap spots where filled...I felt like passing out any second (luckily I did not) and rushed in and out...phew!!

Monday, September 1, 2014

Way Better Promises... New Found Happiness

 
tonight I was listening to Hilary Weeks station on Pandora (once again) and her song Better Promises came on... as it was on I was looking through my pictures and it was a complete tender mercy from God.... as I listened and looked the song really did depict my last few months... The ups and downs. I can still remember how I felt those days... I would never imagine the things I have endured. I never thought I'd survive those days. I especially never thought I'd find happiness again (without being healed) and that is something I have recently accomplished after a long grieving process. I am okay... I may be sick a vomiting daily along with a million other symptoms but it will not beat me! I will win! and I have finally learned to quit fighting myself and trying to control the uncontrollable...I can't I will never win. so I let myself stop...the reward is more then amazing!! I am so blessed, very blessed. I hope this picture depicts my new found happiness even ill (as I view it) I am not crippled, mangled, or broken...I am amazingly strong and #ChronicallyFabulous...(all credit to My very loving Heavenly Father)