Wednesday, May 30, 2018

Major Changes this Year.

I don't blog as much anymore, though I always intend to. My days are now filled with studying and learning.
 (Recently many math problems and sloppy handwriting that I can no longer control due to medical.) I am super glad I did the Pathways Program though BYUI. It has and will open more doors for me. Though, the year did not go as planned; as my days filled back up with pills, schedules, doctors, and therapies. A bit of pain and suffering. As I had to go back to Tube feeds, and endure countless surgeries... I still continued in school. When it actually made sense and I had all the options to quit... I knew quitting was not an option for me. Heavenly Father brought me to it, he would bring me though it. He expected me to have faith in his plan for me, despite the storms. It has been an abundant challenge. But aren't the really good things in life always hard work? I don't know how I survived this year, but then again, I know. I know exactly how I survived this year. God and through My Savior Jesus Christ. A hard year has been full of many unexpected blessings. My year has been very full of love despite the physical pain. This year was a whirlwind of unexpected challenges and unexpected blessings. Like finding the love of my life & getting engaged!
It's in these moments of my life that I realize just how intrecote his plan for us is, and how much love he had for us all, his children. If we follow and continue down our chosen paths, he will be walking right besides us the whole way, until we make it to the top. He wants us with him. He loves us each and every one. No matter what, no matter where, no matter how flawed. He perfects us, out of pure love that only Heaven can offer the children of the promise. So whatever you are going through, or no matter how dreary things seem, remember you are never alone, you are a child of God and he has sent you here to prepare you for a future greater than you could ever imagine. Count your blessings and never give up on him or yourself because, he is waiting with opened arms for you. Always. He will bring good things while enduring bad. He is the light in all darkness. I'm SO thankful for the knowledge of my savior and my Heavenly Father. People may look at my life in fear or down-hearted, but I assure you it's fulfilling. It's God's plan for me and I need nothing more. Never give up hope. As I type this post, 'In humility, Our Savior' plays through my head and it's exactly on point. -Chelle 

Monday, May 21, 2018

Update. Titled, "My Life is Sincerely Crazy"

After a loonnnngggg weekend wait and a day, Neuro called. It didn't go that well but none the less. No seizure but* my body is reacting and doing the exact same thing as a seizure. But no clue why.  I think they will be going back to the drawing board again. However last night when my migraine hit me like a ton of bricks. I had a lot of fluid go down my throat and out my nose. Over three Kleenexs of salt water. After I let that stuff, whatever it is drain out. I felt so much better the pressure went away and I could feel it coming off my brain with letting it drain out my nose. No, it's not allergies or typical "drainage", I know what that is. (This occurs after I'm very symptomatic. It occurred after my last "involuntary muscle" issue. So long story short. I may indeed have a nasal spinal fluid leak. So we will be testing for that issue.  If that is the case it will need repaired. But there are so many serious symptoms not answered currently.) The spinal fluid leak even if it is occurring doesn't answer them as well.) I am not very happy right now about this. Fevers, and scary symptoms are not my cup of tea. I know something is very wrong and I will get it figured out this time. They told me not to loose my spunk. Well this is me not loosing my spunk and fighting. It gets me far. The doctors have admitted it many times when I was well. Well not I am sick again and they aren't so happy about it anymore. What makes me well? Fighting. Never quit your fight and NEVER ignore your gut instinct! I promise it will always lead you where you need to be. God has been talking me through this fight. I don't have the answers but I'll get them, and I know it will be alright as much as it seems like it won't right now, it's all good. This is just one of the many many blessed tender mercies this weekend. Coincidence? I think not!
Faith, trust, & most importantly hope. -Chelle 

Friday, May 18, 2018

The No Seizure, Seizure.

Last week I woke up in the middle of the night in what appeared to be a seizure... I remember three tiny bits of it... Neuro was concerned and put me on IV steroids immediately. Also accompanied by a POTS flare, cyclic migraine, and a fever. The round of IV steroids did help a lot but the side effects were severe. Since the dose ended I also have the fevers and symptoms returning. My Heart rate is super high lately to the extent I dropped 3lbs in 3 days. (Feels like I'm constantly doing cardio workout. Oh wait I am!) I tease the POTS workout Regimen works wonders 😉 Today was awful but I wore my "Not today Satan" Tee so.... I'm not sure if I asked for it. (Wink.) I went to Neuro.  For my EEG since they thought I had a seizure last week. Welp, they duplicated the episode by using a strobe light. (I was fine until they strobed me. It lasted a solid 30 minutes. (Of convulsing and the whole works.) I loose memory after these and I can't talk properly, among many other things. The tech said nothing showed on the EEG as far as she could tell but, she did have to grab the P.A. Something is clearly very wrong, but yet again I've stumped the medical professionals. Seems to be something muscular? I don't know if it's related to my Dysautonomia? I got sent home (no doctor there to read anything.) and I sincerely hope this NEVER happens again. Two in a weeks time, is two too much of whatever this is. Monday I will know more. I hope. Now I guess to worry all weekend about what could possibly be wrong. I'm trying to put it in the Lord's hands. At least they were able to see what occurs. Now they can take my complaints more seriously, and figure it out. Keep on keeping on -Chelle 

Saturday, May 12, 2018

Feel alive to feel the gospel

Sometimes we have to feel alive in order to feel the gospel of Jesus Christ in our lives. To live, to feel, to love, to appreciate the simple life. Feeling the sun heating your skin, and the wind in your hair. Wearing a smile upon your face with bright happy eyes. Happiness beaming from your soul. When we find true happiness through the savior and his atonement, we can truly let our burdens be put as ease and feel complete as God intended us to be. We can set our worries aside and breathe in a nice deep breath of fresh air filling our lungs, pumping is full of live. We can be freed from sin and adversity.  I feel so connected to the world yet, I've never felt stronger to the other side of the veil. Wrapped in God's love for me, feeling the Angels around me, feeling true love, compassion, His spirit in my heart. That's home. That's true peace and rest. That's how I know and have a deepened testimony that Heaven is oh so real. God is there in the details of our days on earth. It's happiness. It's home. It's oh so familiar. It's sweet releif that one day wholeness will be mine, and that I have a plan, a purpose eternal. -Chelle 

Friday, May 11, 2018

Post surgery week 4. Seizures?

Today makes four weeks into my recovery from gj tube replacement/endoscopy and Endometriosis surgeries. I am well overall as far as surgery is concerned. My pelvis of course needs Physical Therqpy yet again. However it's a specialty therapy that's only in the valley. (A.K.A. Three or more hours to and another three hours home, every week.) However with my current Neurological issues I am not able to travel that often. Especially in the summer heat. I came to recollect after feeling funny when I woke up the other day, a memory of the night prior. It was about 3 bits and pieces of what is highly suspected to have been a seizure. All I remove we is my whole body tremmoring viciously, while totally locked up arms out straight and crossed. I remember being confused and afraid but, I also had the "stroke" face with eyes rolling back, and tongue going back as well. And it lasted longer then the others that normally last 60 seconds top. This one was a very long while from the bits I recollect. I also didn't have the ability to talk and I remember trying to talk (to ask for help.) with no success. (Normally Mr. Wrecker alerts and wakes up and goes and gets  my parents. But he was actually asleep. So we will do an EEG. I have not stopped feeling short circuited, tremmoring, having stroke face, numbness in tongue, uncontrollable tongue movements, and going into glazed over periods since that night. Though I had a good day yesterday. (I needed the break.) It is a little scary but the other day God told me "I would be okay." So I will pray and rest in the knowledge that no matter what happens because of Christ I will be okay. My Dysautonomia has been flared hence the seizure. It's not often or necessarily common but we can have seizures. I also have a migraine cluster cycle again the past two weeks. I have had fevers off and on for weeks as well. I have had body aches and joint pain. I have had more neuropathy trigger point pain. I'm living with tremmors full body. The IVIG has offered benefits but we are pausing it to see what symptoms of any it's causing me. The cromolyn sodium has really helped my mast cell issues. The rashes are gone now. Today, due to the flare up. I am going to have HomeHealth nursing come and do IV infusion of a huge dose of steroid (yikes steroids are so harsh to my body!) and labwork, since I haven't been able to drive to get my labs. It's a four day, daily IV infusions. He says that I have autoimmune POTS. Since when I fever with my onset flare up, clearly the immune system is active. My body is attacking itself. Despite the IVIG and Immuno suppressant therapy. In August what happened, was I started having clear Sjögren's syndrome issues progressively. (I am currently suffering from Sjögren's syndrome.) but isn't it interesting the Sjögren's started all of this past on the essentially? I agree with my Nuerokogist, I have autoimmune POTS. I also see the correlation between Sjögren's and POTS as we know there is a chunk of info. out there stating that POTS can be caused from Sjögren's attacking the ANS, or at the least we know it is a cluster condition with POTS. If it quacks like a duck, it's a duck. I am trying hard to stay in the pathways program despite being so sick. I have done very well but, I struggle obviously with attending the gatherings. I'm on my last semester. Disability doesn't need to define us and I will keep trying, and fighting everyday. I had a case of the nerves lay night about today's infusions and I also realized that my port will be accessed all week. I dread having it accessed for several days. I can say with the physical decline, I miss my old body.
But my new body teaches me a lot about the path of true resistance, and anchors me in this life. Everything happens forms reason. For now I endure the bad days and really find joy in simplicity. I had a good day during the day time yesterday. (As photographed above.) Though in the evening, like clockwork, the severity of my illness occurred. I was able to get out of bed and get ready for the day. I haven't out makeup on hardly at all lately. People think if I look okay I'm fine but truly makeup is a coping mechanism for me, not a way to measure my health. You can't see my kind of sick by looking at me. I was outside for a minute enjoying the beautiful sun when the spirit nudged me... "The sun will always shine again." And I promise you it will. -Chelle