Holy Cow Batman. Facing Fears. Doctors.

So we all know in the past I've had doctors harm me. Some with full intent, some on accident, and I'm pretty sure some somewhere inbetween. Today was a day I never thought would happen. I faced one of those doctors whom I pleaded with years ago for help, while dying of poor health and pure starvation. (This doctor knew I was bad off but told me I was "fine.") and I begged in big fearful alligator tears for help that day and never came back. Until fate had it today... all these years later. I ended up back to this doctor. And I got to look this doctor in the face and say, "You said I was fine and I knew I was not." "You knew too" and this doctor did in fact remember me and did in fact apologize. I feel very sincerely. And there where other doctors involved but the truth of the matter is, I almost died to the day of starvation, and my body did shut down. In the midst of all this I felt sincerity of an apology took place. I immediately felt that the doctor is also human and though knew there was major error that could have been avoided, is human just the same. So I faced this fear/doctor and I left with a whole new plan and for now a new doctor. Who seems to sincerely have wants to help me. It's make up time and time to fight. Now I do hope I get the true care I have always deserved. We will see what happens... I honestly have lost a lot of trust in the medical world lately wth all the horrid lies and info kept from me about my CFS leaks... But today, I most importantly chose to forgive this doctor after years. Being a chronic patient is hard and situations do arise often where out quality of life or life in general can be greatly threatened by one doctors actions. We are all human and being a doctor isn't easy. Though it doesn't take away the pain and suffering I did endure years ago, I did survive thanks to the amazing hands of another doctor who had faith in me. And am forever grateful for that pure divine intervention. It's still weird to think I could be dead sometimes. (But can't we all probably think that medical scare aside? Lol) I found out for the first time today my whole GI tract was paralyzed not just the stomach and small intestine. It's the whole enchilada. (For instance if you don't recall, this same doctor swore to me I did not have Gastroparesis after my gastric emptying study said I did. And I did not eat for 3 months. I had 3 IVs per week with glucose and unfortunetly I got very weak and my body started the shut down process of starvation from this very morbid disease. I begged. I pleaded for any form of help because I knew in my gut and I was prompted to get intervention to my starvation. There was faith and lots of prayers that I was so lucky to have answered that next day. It was very rough. Today off the same test by the same doctor my whole entire GI system is paralyzed.) This knowledge of full paralyzation honestly doesn't  really change much right now. I've lived with it all these years. I manage it all the best I can. I have a feeding tube and I intervined nutrition/hydration as needed. But at the end of the day a feeding tube has been step 1 of the best plan of my life. Nutrition is ever so important to our health. I know it! Feeding tubes have a bad wrap more or less. They are scary and they just seem so morbid and "bad". Honestly feeding tubes make me feel like a totally different person thanks to the strength and healing their nutrition and fuel provides. Feeding tubes are the start of life friends not the end. If you're facing the great fear of the feeding tube, I personally say I would do it again... And I have done it again after falling out of remission last year. Both times resulted in good feelings. (Of course I wouldn't prefer to be tube fed. I would eat fully by mouth if I healthily could but I can't so I embrace my weird!)  Today I also found some new news out, in August my body tested positive for new auto antigens. I don't yet know the name of that exact one. At the end of the day it shows my body is attacking my GI tract. They are reconsidering restarting the IVIG in hopes to help my immune system calm down. I did get my records and I'm excited to geek out and put this puzzle together! Once again. (Patients you are your best advocates! No one replaces you) Something is not right in this body and I've known it all along. I also had a tilt table test again since diagnosis and what I do know from it, is my POTS is SO much worse currently (then it's ever been.) Time to get all of this spinal leaking and tissues falling apart fixed. Time to get this body back to midline and remission. All if fails I have hope because, I have been in remission before by the grace of God. I know I will find it again. I have faith that God will heal me again. And I've always been grateful for the healthy days I did experience for that good year! Forgiveness is important for none of us are perfect. This journey is hard but I choose to be tougher. A quote came up today and I know it was a tender mercy. It was a Facebook memory from when I was healthy and I looked so heathy! (To me it's like looking at a different person though it's still me.) The quote by Stephanie neilson. It read plain and simple, "& I am not my body. I am so much more." How true this truly is! We are inevitabley so much more then our physical selfs we are sons and daughters of God with eternal souls that have eternal plans. Some times we have to fight in life. We have to fight for ourselves. But sometimes opportunities will come and forgiveness is the most healing thing this life offers. It's the season for Christ like love and that's my anchor in this whole battle. Through him we truly can do all things. (Even if you never dreamed you would). -Chelle 

Christmas 2018

Well I've hit the post Christmas fall down.

If you're chronically ill, you know what I'm talking about. It's when you over do it for the holidays and spend the next day or days in bed. But I'm happily in bed feeling blah because I'd do it all over again to spend another Christmas with my family. We made Christmas desserts galore. I had a decent day the other day and I finally after a month put makeup on and got dressed! I actually had an outfit instead of witching sweats. Lol. It was nice to feel put together once again.

Me and Husband went Christmas light looking Christmas Eve, after our family party. It's our first married Christmas. So it was nice to spend time together looking at lights. We found a herd of elk and a cow during our drive. All in the middle of town! We made the decision to wear our matching onsies Christmas Morning. It's all in good fun.

But seriously, those things are comfortable! I only intended to wear them to breakfast and gift opening... But I wore it all day long. Yikes! I did find my makeup however later in the day. All I wanted for Christmas is for all my family to be healthy. It's been a crazy year and I truly hope we all leave it behind us in 2018. I hope and pray that 2019 is a fully healthy year! I know likely have a road ahead of me with this spinal fluid leak and issues. It's been making me nervous but I have this great peace in my heart. I haven't gotten down or depressed over this scary month. I just keep looking ahead with lots of hope. I am learning there is a chance I may have an issue in the base of my skull. More then just a CFS leak. I have Elhers-Danlos syndrome secondary to my POTS, which is a collagen disorder. This puts me at risks that I did not know of until recently. All my doctor ever told me was not to go to the chiropractor for it could cause serious damage. My life changed that day November 2017 when I went to physical therapy for strengthening my neck. Nothing happened but I left a different person. That's when I started leaking.  If that's the case we will deal. I have started wearing a soft cervical collar at night and it helps quite a bit. I figured I had nothing to loose. The second I put t on it helps and the second I take it off I feel free but I hurt more without it. I have no clue if that means a stinking thing. Being referred to the only neurosurgeon basically that can help me in the country is out of state but I look at it as... At least it's California and just a state away. Some people have to come all the way across the country. How fortune I am to be next door?  You can always look ahead with hope. Hope and Faith in God's plan and his timing is essential to getting through our trials in this life. It doesn't mean we don't fall down or hurt. It simply means we stand back up and brush it off. Because God does in fact have a plan for us all. So sure sometimes the word neurosurgeon makes my tummy hurt. But at the end of the day something is wrong and it needs fixed. My brain is seeping into my neck daily due to lack of spinal fluid. So we go on a crazy journey again. I know Heavenly Father hears me and my prayers for health for all. He knows my desire for a healthy world. Christmas is for Christ-like love. I didn't want a present that could be bought in a store. In fact I did not even care about material objects. This month I realized just how blessed we are daily. Breathing, eating, walking, talking. There is SO much we already have. And when you can't do those things, you realize just how much we take for granted and just how huge the simplest of things we have daily truly are. No boxes and bows can give us true happiness there is to experience in this life. Family, friends, and loved ones being happy, healthy, and safe. That's what matters. And that's what I want to focus on this new year. I hope everyone had a very Merry Christmas! -Chelle 

Home.No worries.

I've been home for a few days now and the anxiety that I'm going back to the hospital for the millionth time is going away. It's been nice to be simply home with my Husband. I really missed my hound dog while I was gone and I've been enjoying time with Wreckskies as well. I love my half decorated Christmas tree!! (It matches my ring.) We've gotten to curl up on the couch and watch Christmas movies together. 

And I drink carnation breakfast essentials for hot cocoa. (It's actually super good, and adds some vitamins to my world.) I love love love my glass mugs and my new rose gold silverware (or goldware? I'm not sure. Haha) 

I do miss the warm weather of course! It is much colder here but I'm starting to adjust. We have a blanket war in the house currently of which blanket is whose... There is a particular furry one that is the number one blanket to be faught over and we just got it. I have been worried my stomach has been super slow and I've had to really work with it lately. I am hoping I am on the right path! But my motility is definitely worse currently. I'm still awaiting to hear from the guru Neurosurgeon in LA. I have still not received any follow up care from my hospitalization. (As I was promised I would be seen in hospital. They then promised I would see all my specialists the next week. Promises. Promises. They also told me I would be cured essentially if I quit all my medications. Hah! I told them I wished.)  Welp, I've seen no one and can't even appoint a few. I see a GI after Christmas for my cyst they found on my pancreas. My goal is to survive the CFS chaos and to work the GI system to be back on track again. The other goal it to get my nutrition in well to make me good and strong. We forget easily what nutrition really can do for us. I saw that when I didn't eat last week. The body  thrives and runs on fuel. If you want to get better that's a place to start. Hope is never lost. I just keep looking forward and saying my prayers. Something Grandma said to me before she passed away, was "not to worry". I remember joking after and telling me mom, "oh no! If she says not to worry what storm/trial is in my path next?" A few months later the scary symptoms scared us. These issues still worry me honestly, but I think of what grandma told me, "Not to worry" -Chelle

Here.

I was discharged yesterday from the hospital. They promised me the moon and uh well didn't exactly come through. The specialists never came to see me as planned. I have to wait now out patient and go to clinic. I was told they had to get me in this next week at the latest... Only 1 of the specialists have, and one other is two weeks out. I am doing better but oh so bad. I can't eat anything. I am proud of myself. I have started dripping my feeds (formula and water) at 10ml per hour. Last night it worked so fingers crossed. That's EXTREMELY low. (I am supposed to be over 25 to leave a hospital.) I think that's what this week is going to be is just building slower then a turtle speed. I have never been so sick in my life. My head still spins a little when I think about how I got this sick. My spirit is are getting higher just being out of the hospital. However I almost had to back hours after being released. So glad I didn't! I'm so weak. I haven't eaten in a week. I've had IVS with electrolytes and now dripping formula to not get low blood sugars. I may need Iv intervention for hydration but hopefully not! Dysautonomia is so mean but I'm stronger! That's where we are. I'm very grateful for our savior and his love for us. When I am hurting I think of him and how much pin he endured for me. He knows the pain we all feel. I am so thankful do the little blessings in life. Eating, breathing, going to the bathroom, walking, Seeing, being able to do the littlest of things are such huge blessings! We easily take for granted daily the littlest details in our lives that are truly so big! -Chelle 

A Mess, My 1st ambulance ride

There has been a lot of defeated & scared tears this week. I turned to the only one who could help my through the difficult trial Heavenly Father. (This Mormon message- mhttps://m.youtube.com/watch?v=xdN8rfwW3SI  is such a beautiful message by president Henry B. Eyring for hard times. It got me through my sorrowful week..) It's no secret I've struggled this year greatly with receiving proper healthcare. Some of my specialists have failed me, intentional or not. I have not been able to get help. I've been deemed "too complex" for care at hospitals and specialists across the state. Few doctors, that were left on my team,  have been fighting for me. They truly have worked hard and have been the reason I kept going. But the truth of the matter is, I am a complex patient with many health issues. This has led me to literally be tossed around unlike the average person. No doctors want to deal with my complexities. In other words I'm too sick to get care. I also have a Complicated CFS leak that's been reeking havoc on my poor body for the past year. It's been scary. I've thought I was going to die from my scary very real symptoms. When I lost caregivers this year after I fell out of remission, my heart broke. I have been feeling stuck in the middle for a year. Here I had built this beautiful team of doctors and I was doing pretty well. I worked diligently and hard. And I know the Lord is the reason for this. Today a ray of hope came through the doors.

I was ambulanced to Mayo hospital. (You have to roll with it and laugh because crying gives us headaches.

I sent this picture to my immediate family and they laughed. My poor sister thought that the ambulance drivers for me a Powerade slush. But in reality husband did. I haven't eaten really in days not even formula. But tummy is getting helped.)

 I was discharged just a few days ago after working on my CFS leak. I wanted to be on less medications and get well Vs just keep waiting. But that specific doctor was awful to me and deemed me a pain seeker even though I never asked for them. Instead of listening to me instead of assuming, he would have known.

I wanted to get off my meds and get the tests necessary to get me the serious help I need. I came here to be on less

Medications. This doctor actually harmed me by poor actions on his behalf. Those have effected me greatly but I won't go into detail. I am sick, stomach paralysis, POTS, Sjogrens. All of my issues. They initially thought I had a bowel obstruction but I have a severe blockage, & they  found a cyst on my pancreas, this they will be looking into. The issue is the leak needs a very specialized specialist to treat now. So it's currently being review by a special neuro surgeon the "guru" of the country for CFS leaks-treatment now. I pray he can help me heal this so I too can move forwards in life. But today a team of doctors came into my hospital room. They reviews my case and they had a plan! A plan! It was wonderful! They want to get me into pain management, so I can come off some medications. And hopefully find better management of pain! I will see GI, a few Neuro-Specialty, & Rhuematology. They have all the specialists I need here working together on my case as a whole instead of tossing me from one to the other in confusions. This is a team working on me with each other making me hopefully the best care package my broken down body needs! I feel this is a start. It's what I've been begging for all year! I informed them I have been in remission before not too long ago and I even had my feeding tube out for a short time. (When I fell out of remission is when my CFS leak began.) That really lit the fire under them all! So hopefully my GI system heals and quits flaring. And the rest of the puzzles fall into place. There is a lot to be done. I'm sure there will be ups and downs along the way. But I have a new journey hopefully a healing journey. God has plans for me and being sick is hard. But I am truly blessed as a daughter of a Heavenly Father. He told me that I'd be okay again. My grandma told me "not to worry." And I didn't know what it meant but it's ever so clear now. Please, never loose hope in hard circumstances because hope is the tool to have faith. There is so much love in god's plans for us. Keep climbing those mountains. Let your heart breaks be beautiful and know the savior will always be with you. -Chelle 

In the know

This week's long hospital stay has become difficult. I just had my 5th Epidural Blood Patch for my spinal fluid leak.

My poor hands are bruised up good  from the large needles they used to pull the cleanest blood to put around the spine. 

The hospital has done a lot of imaging and have not found obvious spinal fluid leak. BUT this does not mean that I don't have one. Unfortunately they are hard to catch visually on the images. My history from August's horrid leak alone is Proof of me currently having a spinal leak right now.... Today, I learned I was not just a complex case but very rare. They have not ever seen such a big leak in a person. It was a wow you gotta look at this type of scinario. CRAZY!!  They said they didn't originally know what to do for me because I didn't have a hole or a torn area of dura. I had half of my dura non existent. So I literally had no dura around half of my spine!  (I'm very blessed). So that being said the blood patches were never meant to be a fix (but God healed me) the blood patches were supposed to hopefully help me get through it until incoumd find a surgeon to help me. the team felt surgery was likely to be the only case to repair my leak. So though I am still leaking they can see how much my dura has regenerated essentially and that's a super good sign! They said it's a miracle. No one is surprised I'm still leaking, they expect it. Now we do have to fix this and I'm miserable. It's not safe to not have all your spinal fluid and can causes very serious issues and danger to me. (Like it already has) So I'm Blessed! Your prayers for me are working and very appreciative! Today they are sending my charts and images of brain/spine over to Cedars Sinai (out of state) for the advanced care. If I have to have spine surgery this is the best options. I have stumped Mayo Clinic. Currently they are here working on pain/symptoms/seizure control and will be preforming another blood patch to the spine in hopes of symptom releif. Also treating a chronic migraine that is likely being triggered by the spine leaking. My case being such a crazy situation is why the advanced care is needed even without surgeries. (I'm not a fan of this surgery talk so it won't be rushed.)  My gut instinct tells me there is something more underlying this CFS catastrophe. And I hope to find an answer so I can work to avoid these leaks and heal.  My body is physically tapped out. My emotions are tapped out. I'm sick of being sick. So We braided my bun, and are watching tv with my plush neck pillow. The simple things! Our family and friends are the important things that matter in this life. The leaker community lost a very young one today. Leaks do kill sometimes and cause catastrophe to the vital brain and spine. They can cause irreversible damage. Please keep this sweet family in your prayers💕 I pray for peace for all who have lost a loved one,

Especially with the holiday season. I send condolences from the bottom of my

Heart! Just know they are happily home with our Heavenly Father healed once again in peace. Families are eternal. This I know, as mine own angels are with me often. I know grandma was near by a few times this week and it was a great comfort. One of those times I pushed it away thinking "no" that wasn't her. I looked down and on my arm was a fleck of glitter that wasn't there prior. She was letting me know she was there. Always in times of need, I find refuge from lives  storms. I pray this is a message of comforts. Sending loads of love you to all!  ~Chelle    (Updated; I was discharged and I've made it back home. There is no place like home! Being home is already healing my heart. I immediately got a bath bomb and washed the icky week away. Now we are putting it behind us, recovering, & loving each other.)

Hospital admitted a mistake?

Back in the hospital... They say I have a CFS leak but they aren't sure where it is located. They are going to be doing  imaging today. Once we get these results, they can do something to fix it. If they do not find anything visible to their eyes... That means it needs to be reviewed by a specialized specialist of spinal leaks. They will send me to Cedars Sinai, a place that specializes in these Spinal fluid leaks. I am a complex case. My leak is a compex leak. Last night was hard and bumpy. They didn't even start me on my at home medicines until one of my old docs from a previous stay came in. So I had a horrific night with poor pain/symptom management. (Unfortunately, I was doing better at home taking care of myself.) I pray they do not let things so far out of control again. It was a result of faulty healthcare system.  I sat in the main hospital waiting room that's fully under construction in a chair with a leaking spine for hours yesterday. It was miserable. The IV therapy wrongfully kicked me out for being admitted. They were supposed to treat me there while they got me a bed set up upstairs. This way I would have been in control of symptoms. I also would have been laying down as I am supposed to be. But the nurse wouldn't let me even with me telling her that the doctors & hospital's nurse called and told me to remain under the Iv therapy treatments. I'm supposed to be on strict best rest. Being upright makes me significantly worse because the spinal fluid in my head is low causing the inter cranial pressure and symptoms. Noise and lights are a no-go as well...

By the time they got me upstairs I was SO miserably sick.  My poor tummy is flared with Gastroparesis. That's not helping things. It is a heavy burden to be here honestly, but I have to do this. I've been miserably sick for a long time now. The neurological symptoms are severe and only worsening. It's like I had a mix of a stroke and seizures. Everyone, (even the nurses) keep telling my I have a bad "headache" or "migraine". I have a hole in my dura in the spine where the spinal fluid is actually leaking into my body out of my spine. When this happens we get low spinal pressure in the head. The brain is protected by this fluid so that it doesn't bump into things. It holds the brain up in the skull. So my brain is seeping down into my spine and into other parts of my face. This is beating my brain up and making my whole body mad and do wacky things. Such as stroke face. So yes I do have a headache that's worst then any migraine I could ever experience. Spinal fluid leaks are  so much more then that! All the neurological symptoms from this are nightmarish. Today My poor Husband has dealt with my melt downs of tears in the parking lots from Frustrations, and poor care. He has soothed my broken heart that my body ravished. He stood by me and I'm so very grateful to be loved by someone so good.  Originally, I was to do these tests and IV medications out patient. I would come have IV medications with fluids. And get my testing done within the next 3 days. So doctors can make a plan of what to do now... Treat leak here? Or just go to Cedars? And obviously finding the best and safest approach. 

It's like running a marathon to get well

And I can't get the basic of care that an average person would get. I guess I have bad luck. My sweet Husband is calm and

Always lifts these heavy moods.

He heals my Heart during these trialing times of being so sick. He makes me giggle when I don't want to.

Which is such a Big thing! 

He doesn't leave my side.

He slept by my bed the whole night. I feel bad we are here going through this. I am very blessed to have such a sweethearted, Compassionate man in my Life. He doesn't just stand by me he lifts me up -Chelle

 

Wedding Photos and a CFS Leak

Enjoying my sunset view of the mountains as I sit in IV therapy. Well, it seems I'm being a complex spinal fluid leaker. I just saw a new neurological specialist who thinks we need a better picture of my spine and head. She works on the team whom I've been seeing since my hospitalization in August. This being said, I will have several different types and new MRIs this week. We need to determine  where the leak is exactly. Since we have patched my spine previously new images are needed to show the current status. However, right now it very reasonably seems that I have a spinal fluid leak. We also will be doing a slower version of the Myleogram to detect any slow leaks. If nothing shows on these tests, they will be sending me out of state to Cedars-Sinai, to a specialists in spinal leaking for further care. They are the gurus of these spinal issues and I need the added complexity care. Meanwhile they will put me on IV medications to maintain the pain and severe neurological symptoms. The doctor was very respectful and nice. I felt she is trying her best to help me. I have not been to this particular doctor so she was new. It was a nervous morning coming to see a new doctor in such a delicate situation. The song "Small Enough" by Mindy Gledhill has been playing in my head since We said our prayers this morning. It's been a huge  comfort to feel Heaven by my side. I have been to this large facility years ago and it failed me. I understand those where entirely different doctors in the past and that's not the facility as a whole. They seem to now continue to take me in under their wings. Now to wait and see. We pray the lord will let us see what we need to see and take us where we need to go to get me back on my feet! I honestly do not feel I have fallen out of remission this past year. I feel it's all related to the spinal leaks. CFS leaks are more common in POTS patients and it can mimic symptoms of POTS. So that gives my heart some hope that I can be well again if God's will. On the bright side while awaiting between appointments, our wedding photographer (We were lucky to have had the pleasure of  Maite Photoraphy at our wedding day to capture our big day! She is truly amazing!)  sent us our beautiful wedding moments. Today marks our one month wedding anniversary and with the day being a rough medical day... It was a good day to get a good suprise amongst all the chaos! It lifted my soul. Just as my husband and bestest friend lifts my soul daily.

I truly had the perfect wedding day to the perfect man!💕 - Chelle 

Never loose your sparkle 2018

My spine may be leaking, my brain bleeding, and my heart full. I can't drive or take care of myself currently. I am on strict bed rest and when I went to the pharmacy with the Husband tonight, because I was bound to go stir crazy in this house... I stumbled like a drunk due to my spine leaking... And I got very stared at as if I were an alcoholic or something of sorts. But I kept going because well, when you get lemons you made lemonade! 

Something I have not been able to do for a long time is lift another sick person up. That's a big reason I haven't been blogging anymore. You see when I got sick, I was inspired by God to share my story. I wanted to help others with the gift Heavenly Father bestowed upon me, that trials are our biggest blessings in this lifetime. That's something my heart firmly believes in to this day. Hard times come but they come for a reason to stretch us further then we could have ever done on our own through God. That's what life is all about, getting our bodies, learning the things we need to go onto our next life, our eternal life, in Heaven. This is what brought me comfort was my faith in God and God's timing. I always knew in my heart there was a fire that burned to help light other's facing hardship. I simply prayed and followed what God put in my heart. As I went into partial remission in 2016, it got substantially harder to feelconnected to  the chronically sick. (I was not cured and still had many of my own health issues.) I did not understand why it was SO hard for me to share my story and my knoweldge and faith in God and his plan for us all. I think I was trying too hard and when I couldn't just make it happen easily, I took a step backwards. Because, everything I've ever done regarding this blog, has been in my heart. So, I decided to pray about it. God told me it was okay to stop blogging. He told me I had helped more then I could ever imagine. And it hurt my heart a bit to stop but, I knew at the time I needed to do Chelle time. And honestly, I am glad I did. I lived and experienced things that I needed to during that time in my life to get me to the next phase of life. Of course during that time, there were definite trials and conflictions in my heart that I wasn't doing enough in my power to help others. And I would try but I just didn't have the answers and the comfortable knowledge within me. Kinda as if I lost my spark. Writing became  extremely hard and I literally would just sit here and stare with writers block. I never plan a post and I never had an issue. That's why this blog is a hot mess. It was straight from the heart and published. Easy peasy. But tonight after enduring a hard month of pain and suffering, my heart felt that spark! And I was brave enough to reach out to a fellow spoonie. I gave my heart felt testimony that we are SO much more then our bodies and each and everyone of us is oh so precious! We each have a plan Enternal and God's love for us never fails. Trials are life's biggest blessings but not to be confused that a trials do in fact hurt and weighs  heavy mentally and physically too often. But God has given me this platform in this life. I was a very sick disabled girl who functioned highly and fell straight on her face at 18 years old. I required lots of care and I almost died many times. Most of these times, I didn't even have a proper diagnosis, and I'd bounce around from different specialists begging for help. You all know my stomach paralyzed from my neurological disorder "Dysautonomia" and I lived through feeding tubes and central lines. Then I got better and ate by mouth. I also have found the one whom my soul loves and I get to tell others.. I did not think anyone would ever want to marry me or love me. I was too sick. But here I am eating and married. If it can happen to me it can happen to anyone! Being sick hurts but you are still you inside. God is going to work through you. My work has to be with being ill and trying to find the precious inspiration in the mess of that. Because giving up hope is never an option. God will always be there for you! No matter how little or strong you think you are. He is there letting us learn and grow into the divine eternal beings we are. So we can come home to him again perfectly. Do not let your trial ruin you for it is the beauty of faith that builds you up. You are stronger then you believe! We humans can do anything through God and his ever-loving faith. Broken my body may be, but my soul is full of gratitude and thanksgiving for the simplicity of happiness life truly brings. Hug your loved ones extra tight, dance in the rain, smile through the pain, and never loose  your hope and your divine sparkle! (I am back!!)  -Chelle 

November Blues?

I have not known where to pick up my blog. I have had a sick brain and that totally disturbed my writing. Simple tasks became hard. I guess I'll just do a time line of what has been going on the last few months. This way everyone is caught up. I was in the hospital for several weeks Then once out I had to stay in the valley. I could not travel due to the altitude change. It posed a huge risk to my brain. So, once I was out of hospital I stayed in the valley and I was on bed rest the whole time. It got to the point where they told me, you're so sick this is just the way it's gonna be. There isn't enough medication to safely manage this pain. So I waited and about a week out of hospital they did another blood patch. Blood patch #3, and #4. They really went to town with these patches and patched my whole mid back down. This process  helped significantly! I was better from that point. (Well I had to recover but the issues and head pain.) We did a the myleogram later even thought the risks of causing a leak were high. They needed a map to see where things say. Well they way well because in this particular test it didn't show anything active. When I had this myleogram, I personally think it caused me a small leak becaus, I was never the same after this very test... So I was sent to neurology for further care. I've been waiting on this process.

Mean time I was beautifully blessed with a wonderful, perfect wedding day! It was hard getting there! There was definite sucking it up and pushing through days but I got there! It was worth every single thing!! It was perfect. The weather was good for a fall November day! It didn't rain or snow! (My worries because we had to push the wedding date out because I was so sick.) I felt good during the wedding and reception!! I know Heavenly Father was behind this blessing. And now I'm happily married to my best friend 💕 We do intend to be sealed in the temple on our anniversary.(I would like to add, never give up HOPE! If you are sick and you think you'll never get married because of it... Stop! I was there. I wouldn't even date for years due to believing I wasn't ever going to be enough to be loved. Or I was too sick for marriage... No you are always enough and the right person won't care about it! So keep dreaming!!) I've just been busy turning my house into a home. We have been very blessed with gifts and are oh so thankful! But I have to admit there was a day when I was tired of opening boxes and cleaning things to cook or eat. Haha! It was Christmas in the G home for a month but my heart is in love with having my own kitchen to cook in. I don't know why there has always been something spiritual about cooking in the kitchen on a icky day and listening to Hilary Weeks or hymns.

Unfortunately, I have been down the past two weeks. (But don't worry my floors are still clean thanks to this beautiful blessing! With my back issues and health issues we felt it was a very worth getting!) One day I simply dropped something and bent over to pick it up. I blew my blood patch. The only way I can describe this feeling is to put a water ballon next to your spine and pop it. My spine is still leaking. I immediately contacted the Blood Patch doctors. They needed neurology to do an order for a blood patch. But Neurology deemed me "too complex  patient" (because of my Dysautonomia  and other medical conditions) and thought that being in bed, in pain, on pain meds, and having neurological side effects for the next two and a half weeks would be better for me. So I have an appointment this coming Monday. I pray the doctors can squeeze me in for a blood patch! If I don't end up in the hospital sooner. I have only progressed downhill fast. I started hearing voices, and I hallucinated two nights in a row. My vision is messed up, my speech is all over the place. My blood pressure is high again.  I have the same stroke face and I have those episodes of seizures again. It's honestly gotten scary again for me. I don't know when to take myself into the ER. Last time I had  aystemic meningitis, bleeding brain, and CFS leak. So I don't know what symptom came from which problem. They told me yesterday they thought my brain currently is bleeding with the newer symptoms and my history. So I currently have a treatable Spinal fluid leak that is beating up my brain and possibly making it bleed.
How do I get through this stuff? I pray often, hard, and a lot. That's the only thing that gets me through these crazy challenging times. No matter what's going wrong in your life or how scared you are, pray. Cling to Heavenly Father and I promise he will always be there to help comfort you! It doesn't mean the trial will leave, but easiness can take place as well as healing of the mind and body. I don't know how I got SO sick but I do know my Heavenly Father loves me and can heal me. I have felt angels around me on very dark nights. I know D&C 74: 88

"And whoso receiveth you, I will be also, for I will go before your face. I will be in 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 very scripture quote has been my glue through every single crazy thing I've stumbled through. That's why I repeatedly share it. I know it's truths. I've witnessed it too many times. I'm not going I let this pain win. I'm not going to let my mind play tricks on me of self doubt.  I currently can't drive a car or do anything out of the house alone. I think loosing that independence has been the very hardest soul crushing part. The longing for normality and the frusterations of " I can't".  I do not know why this is happening now or why Husband has to go through this great trial with me. Especially so early in our marriage. But I know our engagement was full of trials too. They brought us closer. We both learned things and I believe that's what trials are truly about. Learning to dance in the rain, even if you're in pain. So, I'm frightened again but I know things will be what's meant to be. I'll get me feet back underneath me again. Hopefully soon this will be behind us. In the meantime, Prayers -Chelle  My best friend works hard to make me laugh and we find ways to have fun even when you're stuck in bed or on a couch! Our first Christmas tree and our cute couples onsies. They match too! This man puts up with a lot of me!

Who is Healing Me?

My body is on fire. My bones burn non stop. I feel weak and tired. I keep pushing through the pain in faith that my Heavenly Father can not only heal me but lift me up through the struggles of rehabilitation. I want to do more. I want to be better. I have faith again restored that I will be whole again someday. I have faith that these earthly trials concerning my health will one day deminishe. He is healing my heart and my body one piece at a time, one day at a time. I can feel it in my soul. -Chelle 

Celery Saga of 18

This is my "what did I do?" nausea face... Ugh! 

You guys! I ate a whole salad the other night at dinner! Now hold on, the salad bar came with the meal... So I originally got it to take it home for someone else to eat. (Why waste? Right?) well... I got brave and I was like this looks tempting. I've been eating extremely well lately. So, I caved. I started and I couldn't stop. Vegetables are delicious!! Especially when you have not had them in years! With croutons and dressing! Mmmh! I was literally in cloud 9, and I was so proud on myself. I was like well... Cool... I can eat salad now. (But I probably shouldn't regularly.) well yesterday I was cleaning out the crisper and the celery was on its last days. So I washed, cut it up, threw oh the bad parts. I ate some and threw peanut butter on it. It was also scrumptious! So I was waiting to get sick after my snack. Nope. Handled it like a champ. Today I had celery and peanut butter again. However, this time went as previously would have planned. To my suprise on day three I got very sick. Now I'm laying waiting on the nausea meds to absorb. I feel my super powers leaving me. (Wink wink lol) The other days of eating vegetables have caught up to me and have been a rapid reminder that yes, my stomach is paralyzed and I can't break down veggies no matter how much I want to. Some days it's a hard pill to swallow. And the funny part is I get told often how lovely it must be to not be able to eat. I can eat, What I can't do is digest food. I still crave and want to eat... It's a struggle alone. long story short is, if you have a functioning GI. Love it! Care well for it! And from the girl who can't eat vegetables, eat them!! They are good for you! I felt very healthy during the times I did well with them. It was fuel and it made me feel well. Back to the formula for nutrients. You don't fail unless you quit trying -Chelle 

Engagement Photos & life's trials

Sometimes you just have to make yourself push through hard times. And I've had to do this lately. I have a wedding coming up and things to do. In fact I had engagement photos a few days ago.

(This one is my favorite one, it wasn't posed and it simply captured a moment in time. I was getting worn out at this point. He is my safe haven, always there for me. This is how our relationship is. I'll let the picture say it...)

Backpack of medical supplies in tow. I did surprisingly really well. I know Heavenly Father lifted my physical burdens and allowed me to enjoy these precious moments in my life. I was extremely fatigued afterward. So I came home and layed on the couch while my sweetest finace ever, went to the grocery store for ingredients to the turkey wraps I wanted. Came home and prepared it for me! (He even looked up a recipe to make them like Costco's wraps.) He is truly so sweet and good to me. He in so many ways a huge blessing in my life. (And not because he cooks or feeds me. Lol) He is my best friend. I did get to speak to my Doctor and He decided in order to continue treatment, a myleogram was needed. They did not do this specific test in patient due to the severe risks it poses to me. It's been too long, even with my breaking a blood patch, I need more help. The leak could be in other areas and we aren't even attempting to patch in these areas for all we know. This test will give us a full view of what's going on. That way we can discuss treatment options of more patches or, if the patches aren't working and surgical repair is now necessary. I pray I will not need surgical intervention. I have so many health conditions that aren't well understood. Any bodily trauma as this broken record repeats, can cause the course of disease to change negatively. This can be permanent. I don't know why I'm being so trialed. Our engagement has been fully trialed in many ways. Life simply got crazy the second we got engaged. So many things have happened that no one could have known not prepared for. But we both have faith in God's  plan for us. We know that the lord does provide and guide us down the path we need to be on. Being chronically ill will always pose trials of it's own and we only have faith that it will build us stronger by teaching is lessons about life and Enternal preparedness. So we leap in faith that marriage is between one man and one woman. We have faith in our new family. Trials and tests are all a part of our eternal plan. Trials are a part of life and will be apart of our marriage as it is for all. Surgeries and struggles stink but, we know that big life events aren't easy or for the faint of heart here on Earth. We typically don't ask for trials here on Earth we tend to try to avoid them but it is when we fully embrace them we become the people the lord wants us to be, using our full potential. So my heart will weigh   heavy at times. My pain may soar, but I will be embraced by the love of God and with him we can do all things. I am simply lucky enough to have a loving partner and a best friend in this life to go through the good and the bad times with me and for that I am the luckiest girl on the planet. The rest will follow with time and be what it will be -Chelle 

I broke my blood patch

I've undergone 4 epidural blood patches now, for a spinal fluid leak. Patch one did not do anything. Patch two helped. Patch three and four done at the same time, helped massively. Well, until I sat in a recliner sideways to keep my feet up and off the furniture. (I'm a POTSie we like to keep our feet in the air.) well, it was a very brief sit-down as I heard what sounded like fabric tearing. I looked over my out fit.. It was good. I did however notice a cold feeling straigh across my spine where my leak begins. I didn't panic and told myself it was ok. I would be fine, I was just nervous and over reacting. By the next day I was back to massive pain accompanied by massive symptoms. The pain in the head is doing better, the symptoms are not. I have severe brain fog, memories issues, I talk funny...( I kinda will add different accents to my sentences), also I say the wrong words and flip my words backwards, I have had some facial tremmors, I have had severe hunger, pressure in eyes and neck, neck burning, my eyes for me are harder to control in movement, I kinda get pale and grey looking at times, I have nausea.  Its truly a lot of symptoms. Obviously some are more severe then others but I fee the worst oven ever felt in my life. The mental tol this takes to lay flat all day everyday is so draining. Then the mental end that this physically causes... Spinal fluid leaks mess with your moods, they can and often cause depression. So to add these things on top of a already mentally draining situation... This is what makes it so hard! The epidural blood patches, the worry, the seriousness of it all. The doctor has sent myleogram testing orders to be done. This is the test they did not do, due to the severe risks it poses on me. This is step one for surgery. I don't feel the nurse is listening to me. The patch worked I just messed it up. The Doctors are going off chart notes. I'm praying one will call me. I've been trying to get one to all week. I feel nurse blocked. But I know she is just telling them that the patch didn't work. She even kept telling me a different version then the one I was telling. I'm down. I'm down big time. I need all the prayers I can possibly get. Heaven is the only way I can get the through this devistating time. I am heart sick. Lots of love -Chelle 

Particularly feeling

I don't particularly feel like writing today. I'm feeling defeated and I typically hide these emotions from here. I have a feeling once I start writing this, I'll feel better! That's usually the case.  I am a huge believer of hope and making lemonade out of lemons. I know that our Heavenly Father has given us each a plan. I know to endure, until the clouds lift and the sun comes out once again. That's the thing about bad times, the sun eventually always shines again after the storm passes. Some storms are short, and some storms last weeks. Sometimes the storm even blinds our vision as to what's ahead. This is where we learn to be strong and trust in Heavenly Father. We go through storms hand in hand with him, faithfully walking blindly, knowing what comes our way is meant to be. The storm will eventually clear and vision will be regained. I could feel the clouds lifting last week and this weekend another unseen storm rolled in. Prayers are appreciated as always.  (I've gone a bit backwards with my CFS leak) I've decided to do bed-rest for the next few days. It seems that I blew my blood patch. I was finally feeling some what human and seeing the light at the end of the tunnel. I sat in the recliner sideways (I'm petite), to keep my shoes off the furniture. I mean after all I was not raised in a barn! Lol. This left my spine in a "C" position. I wasn't even thinking when I did this... Until it was too late. While I sat there very briefly, I heard a noise comparable to fabric ripping. I checked my clothes. (Especially since I've gained some stress weight through this traumatic recovery process.) However with the noise I felt a spot in my back where my leak starts feel cold. Other CFS leak symptoms proceeded to come back. About 24 hours past this I was in bed miserable with positional headache (or what I call the headache a normal person has never had! It's way worse and intense, you can feel every blood vessel in your brain (the pressure is so severe, I actually get anxious that my brain will explode.), nausea, severe pressure behind both eyes, face neuropathy, stroke face, taking weird, burning neck, unsteady hands, wonky vitals. Pain in head upon changing positions. Like laying down helps... But sometimes for me standing helps, and if I stand the movement of the standing up from being down will make my head throb so bad. Or vice verses I will be up and not feeling well, in need to lay down. So the movement of standing to sitting even is horrific head pain. These CFS Leak symptoms are so very specific now. I recognize them. Another person with these has advised me that total bed rest for 3 days can allow the blown blood patch to reseal. The good news also is the patch obviously took or I wouldn't be experiencing this hard stuff again upon breaking the seal. (Obviously have a call into the doc. But it was weekend. I am not jinxing anything but, it didn't hurt me to do bed-rest. Well maybe it broke my stubborn pride...lol!) This has been so rough mentally. The second I thought life was coming back to me again, it was yanked from me, again. Over sitting in a chair wrong!! I'm struggling mentally from the trauma of the whole situation. The thing I never wanted to happen. Happened. It wasn't just POTS... Something was seriously wrong with me and I couldn't get proper help despite having a whole team of specialists. The one specialist who should have caught this sooner, before it became so severe... Ignored me. This should have been caught months ago, not when it was so severe my life was endangered. I could have died. Those emotions come in waves. I've chosen to move forwards and not focus on this. The trauma will go away with time. I put my focus to healing, and my new group of helpers (specialist). They took me on when they didn't have to. For that I'm thankful. I like to look at  the positives and try to forget the negatives. I am still human and the negatives come up, but I try to not let them consume me fully. Time keeps ticking and I keep trying my best. Last week I had a decent day and finally got dressed like a person. I know sick people talk of this topic often... We may look incredibly healthy, & happy. It looks like we must be cured or not in need of help. I'm going to use last week's selfie for example. 

I know I look well here, I feel happy in this out cure because it was the first time I had worn makeup in over a month. My souls was happy this day. This helped me persevere to get dressed and curl my hair. Because those things to me make me feel alive. It's soul food. I have to embrace these moments, for I miss too many not to embrace them all!! 

But what you don't see in this photo is....

the breaks I took getting ready.  That all I did this day was just that get ready and take a few selfies in my yard, and returned to bed. That I was tired for the day simply from getting makeup on and curling my hair. That despite looking well I'm chronically sick with several conditions and I recently almost died. I have a spine injury and it's very severe. I may need surgery soon to fix it. I am recovering from a bad brain bleed, meningitis, and a CFS leak. A three week hospital stay that has left me with full body de-conditioning. The amounts of pain killers and other medication cocktails taken, for me to be able to even do this. All I did was get ready for the day and stand in my yard taking selfies. (Is that super well?) I am just trying to enjoy my good moment on these days.. And it's not about getting likes on social media... Its fuel to my soul, allowing myself to feel as normal as possible, feeling happiness for a short moment in the depths of despair, allowing myself to come up for air because I'm being water boarded. It's  the message that I'm still trying despite all the things I've been going through. I full heartedly believe in fueling your soul. When God gives you a window open it up and enjoy the fresh-air  breeze. I believe in hope in hopeless situations. I believe in smiles and letting your happy soul shine out of your eyes to the world. I believe in being an example to others, that hard times do not have to win. "Don't you quit. You keep walking. You keep trying there is help and happiness ahead. Some blessings come soon, some come late, and some don't come until heaven. But for those who embrace the gospel of Jesus Christ, they come. It will be alright in the end. Trust in God and believe I good things to come." -Jeffery R. Holland. This quote is perfect from one of many favorite talks. I just love Elder Holland. His talks come very personal with me and they help hold me up when the storms roll in.) I am sick.  I am feeling broken and bruised, but my spirit is in tow. And I know I have the help of my Heavenly Father every single day. He gives me what I need and helps me move along. Hand in hand. He has blessed me with angels here on Earth to catch me when I'm down, and to hold me up when I'm too weak to stand, the love is endless. There isn't a burned that can't be lifted with lots of love. Be kind to all. Love one another, & simply do your best. Don't measure your best efforts to any others. Just you and focus on your goals, where you want to go or do in this life. You may be limited at times in this life, but you're not limitless. -Chelle 

The Highs & Lows

Today I masked the huge task of putting my makeup on. I haven't probably worn makeup in a month. I feel like time stopped while I was in the hospital, but it only stopped for me. Lol. To my suprise nearly a month has gone by. It felt better to feel put together. The answer to how I am doing is, "I'm better but, not better." I had two more epidural blood patches after my hospital stay. This is where we learned for the first time that I have a herniated disc. (L1) The disc is the cause of the massive spinal fluid leak. Bed rest and epidural patches we hope and pray will aid my body to heal itself. The surgeon looked at my case while I was getting my 3rd & 4th patches, also my last. They will not do anymore because, it should heal. If it does not heal it will need the aid of surgery. Obviously, we don't want surgery. I have a month to heal and then we will start doing testing that poses risks for me upon surgery. We didn't know what caused the leak and were under the impression it was spontaneous. So though I was upset to learn I have a herniated disc, (that was a very abnormal case.) along with the leak... It kinda eased my mind to know something caused this horrific situation. I still am unsure how this possibly happened to me. I don't lift nor am I active. Then again when you get deconditioned you can get injured very easily. I'm a tiny girl so everything is heavy maybe somehow I lifted something and it injured me. I'll never know. The dog ran out of dog food and thankfully our sweet neighbors have taken care of feeding him their own dog food, and caring for him the whole three week I was gone. Such a blessing to me and my pup dog! So I got out of the house for the first time to buy dog food. I went to the store, pointed at the bag I wanted, grabbed some treats, checked out, and came home. Haha. I will admit having a fiancé comes in handy. I don't have to lift anything. I get to point at it and walk away. Lol. Such a very short trip to the store can make you feel human again. The rain came in today and boy did I suffer with head pain. We pushed the wedding a month to November, We lost a month in the hospital so we need a little more time to put things together. There is lemonade. There is hope. A little bit of struggles, pain, and aches. Confusions at times, but hope nonetheless. I have a life to live and people to love. God has a plan for me and I will rest in him. One day it will all make perfect sense. -Chelle 

Blood patch round 2

Update: I have been one very sick girl! 

I have never been so ill and in so much pain in my life! They can't even control it in/-patient care. It's been physically and mentally draining...                                     I went from this person:

To this very sick girl in less then 24hours.(despite the ongoing symptoms this day was Patricuarily worse.) 

I at one point was hallucinating, my oxygen was in the low 70, high heart rates, with high blood pressure?! My brain is on fire and the pain so so hard to describe. It's more then a bad migraine. It's flat out shady and I can't contain my functions at all times. Speech has been effected by this, memory, vision. I was in bad shape. I went home ER completely thinking it would be a total waste of time and I would be home by the next Morning. Boy was I wrong got me a air plain trip and now have been in the hospital 13 days. They've done their bests and have treated me well. Hospitality is truly nice In medical care.💕 

I would love to send my thanks and love to all those whom cared, supported, help distract me, and loved me. These tender mercies are so precious to me💕👼

Angels on both sides of the veil have accomadate me, my special Angels on the heavenly side as well has the many angels. Mom stays here with me at the hospital, and sleeps in a chair. She does everything she can to assure my medical safety remains intact. Thanks to the people who made time to come visit me! And thanks for the special treats as well! Thanks do Chelsey and Billy for sending a nice care package. (I'm gonna gain 900lbs before my wedding lol 😉😉)  You're too kind and I'm grateful for you each! Quit spoiling me rotten lol. Now don't mind me!

I have a bag of goodies to eat .😌                                                   (8-20-18) UPDATE -I've  been in the hospital  for 9 days. (I think. That's a frighet🙊 So before I was flown out, my spinal tab showed Menigitis. They weren't sure what type. But eventually is is aseptic Menigitis. After being airlifted to Mayo, we found also with the aseptic Menigitis. I also had a large spinal fluid leak, (they actually just  me in on a secret that half of my spine has a leak😳) that's very significant! and a hematoma bleeding on my brain bleed because I've had to trauma and thy spinal tap could have caused it but it was pretty bad. Doubltey that happened in small area of time. They don't know the exact cause. The meningitis could be from my IVIG infusion. (Not the IVIG but the brand, sometimes causes a sensitivity or reaction in the body.) I have been miserable for a few months but 9 days ago symptoms became bad. No epileptic seizures, a lot of neurological issues, my brain and spine feel like they are on fire. Then the unbelievable pressure in my head. It's not regular migraine or bad headache.  My  sent me into ER for a check up of infection (especially with my friend the port). I was fevering low grade so he was concerned.  He wanted a spinal tap too but we didn't think the ER would want to. (I talked myself out of going but luckily a family friend intervined and advise me to go in.) The PA was super nice, and listened. Did the spinal tap and that's how we know about the Menigitis. Flying me here to Mayo has been good. I'm sick of being in the same room for 9 days straight but blessed to recieve car I'm in need of. Which right now is a lot of basic necessities. Brushing your teeth, bombing your hair, getting food on your own, standing, talking, hearing... We all have so many blessings each and every day. These neurologisr are sincerely trying to help me feel better. It has been rough on the caregivers as me, my body is NOT a happy camper! It's been miserable. Today I got the second blood patch (how they fix a spinal leak.) and it was very painful and I felt like passing out, also major pressure occurred in My head.  I was concerned something had gone wrong with the procedure. See, I've been pretty medically stressed out lately, so I was really nervous as no one could get a vein to draw blood from me for the patch. Once they finally got going it was SO much pressure and I felt like passing out and so I told them"I am really scared right now I'm sorry, this pressure is freaking me out." And the room cheered and loudly YAYY! Apparently that means we got the patch up to the brain area. )

(hopefully it's enough and can seal all the holes.)

I May need more patches but we have confidence in the fact that there is a higher neck spinal fluid leak and hope this lower one reaches to the top of spine and make my misery better. It's been hard to need help with every little thing. It just reminds me how much the little things are truly worth. Like eating on your own, walking by your own,

All those little this are such blessings. I've been in bed on my back for two weeks now. The physical therapist said I'm not ready to start strengthening sadly because I'm doing so poor. We have to get me better to be able to ease into that. That's how sick I am. It has given me humility.  It's been a scary journey. I prayed often and the savior pulled me through, again. Grandma left me a sweet message. This was on my floor in my hospital room, the nurse kicked it across the flood and we all where looking. It no joke was a pink Pearl 💕

grandma was making herself known😊 and my mom keeps asking me where is all the glitter from. Glitter is flowing you around and it's not even on you. Your phone has some glitter but these ones aren't the same. Grandad was with my too I came back from my procedure with glitter on my arm!  Lol so I'm blessed, loved, and have Angels round about me to bear me up! We have to keep fighting and sometimes that means leaning on the smallest twig of faith. This battle has broken me, but it did not destroy me, it merely made me stronger!  -xoxox-Chelle

And YES! Snalchat Filters made a sick person's day!

This years health explanation/recap. What's been going wrong?

Dark days come and dark days go. (I had a bright day last week, well moment because I don't go a whole day without symptoms currently, but I'll take any good times!) 

I have not slept in two days now. (I slept for around 2 1/2 hours the past 48 hours straight.) I just realized I did not blog. So, here is a post. I'm so tired and I just finished round 2 of my IVIG dose. So I'm pretty worn down. (IVIG makes you sickly, flu like durning infusions. Luckily it dissipates within a few days drastically.) I don't know that's I've really given the story of what's all been going on with my health this year. Obviously it's drastically declined. So I'm going to recap it and try to keep it shortened. It is pretty confusing, even for me. The IVIG we started almost a year ago for my POTS. I hit the autoimmune criteria. So, since I was in a good partial remission and starting to have issues again, we did what we could to try to save my health. (So we started IVIG infusions as, they had started to publish that in certain POTS patients whom hit the criteria, where having drastic positive changes after being on IVIG. It takes 1 year to really tell.) It is rough and I got really sick back in November neurologically which wasn't a fun month. I had a miragine for over a month straight with three rounds of steroids/nerve blocks throughout my spine, head, and even some facial muscles/nerves. I was on many migraine medications and literally nothing worked. I had stroke high Blood pressure for that month as well. (Which POTS actually gives us low Blood pressure. So I normally run a low blood pressure. None the less, no one should be having stroke high blood pressures.) I had some seizures but the nurses never got the doctors. They happened fast, maybe a minute at the most. I looked like I had a stroke, (facial dropping/tremmors, and I couldn't talk. I had normal scans/testing  and was in the hospital. Everyone knew something was clearly wrong but, no answers came. Finally we got to come home as the immediate danger of the thought to be "brain bleed" or Spinal fluid leak was not.. (Thankfully) They called it a chronic migraine cycle and thought he severe pain was elevation the blood pressure. I did get slowly back towards being on my feet but around Christmas time, I caught a 48hr stomach virus. This virus changed the course of disease for me. This is why I am so upset when people knowingly expose people to their germs. I am more susseptable to catching germies because I have to suppress my immune system so it can't attack my body so badly. This means we know my imunnesystem down permanetly.  If I get a simple virus, my whole life can change negatively permanently. And this time it did... (I have neurological Gastroparesis, due to Dysautonomia/POTS.) So when my POTS gets bad it takes my GI function with it. We faught the flare but I just couldn't cut it and I ended up hospitalized with starvation and, I had to go back in Feburary and get a feeding tube placed once more. I started Jejunal feeding but, it didn't go well at first. I ended up hospitalized for a week with an out patient surgery. My feeds where too low, they could not  let me leave without bare minimum nutrition. I've gotten better with my tummy but it's up and down. I do eat solids but in the same day I may reject simple water though my small intestine. It's super wonky and my body despises the nutrients it needs. I tend to eat unhealthy foods because they are easy to digest, so I don't feel icky. It's something I have to monitor and make sure I'm logging in my diet and manipulating with formula daily. I've started having what appears to be seizures. That was the end of April. I woke up in the middle of the night I only remember a few seconds of it. Which it really isn't normal to remember them. I also started a chronic migraine cycle. This time also accompanied by a "stroke face" and I even had speech disturbances, I had severe full body temmors come in with this and last. So we with the Neurologist, decided to stop the IVIG, because I have been so sick since starting it. (Now remember I only started it due to starting to get sickly again.) We had to pull it and see. That was the Only way to know. We stopped this treatment of IVIG. Then Neurologist ran an EEG and they mimicked with lights, the larger seizures that had just started, no doctors where on staff unfortunately, and the test was normal. They did not have cameras up as well. So they missed it but the tech saw. Witnessed the speech, stroke symptoms, tremmors, and what literally appears to be an epileptic seizure. (For 30minutes). I then couldn't walk or talk and my leg turned in and locked. They of course told me not to go to a hospital unless it didn't stop after an hour, because it looks just like an epileptic seizure, I ran the risk of being out in life support due to the severe sedation that likely would be administered to stop the seizure. In reality it wouldn't have worked because, they were not epileptic. (There isn't any other options it's pretty strict rules.)  These symptoms stayed and lingered this time for good while off and on. We did IV steroids in large doses to break this "cycle" of sorts. It helped but only while I was on it. As the steroids wore off the symptoms came back with a vengeance. I did have some issues within my actual health care being taken care of but, they have worked it out and fixed this. I also got kicked off my Cromolyn Sodium which is one of the only Mast Cell Stabilizers that actually treat my Mast Cell Dysfunction. (Mast Cell is and Allergic reaction. Basically due to my nervous system malfunctioning, my body isn't regulating it's mast cells. We get rid of them with our ANS &, for unknown reasons, my body is is it holding onto them. We do know it's common in POTS patients.) So, these Mast cells dysfunctioning trigger my neurological state. (Which is frusterating because the Nervous System is the Culprit. So we end up going in a circle an have to try to break the vicious cycle.) So I've been back on my mast cell meds for about 2 weeks. My rashes are better (not gone) a.k.a what all my doctors, even a dermatologist, and allergist-immunologist said was acne. No, it's a clear mast cell rash. And it does look like acne. I also have flushing hot red skin in my cheeks and ears. It's comparable to a sunburn. It's gets red a physically hot. This is a mast cell sign*. But with time I was having severe neuropathy and pressure in my skull and base of neck that was/is horrendous for a long while. It was no longer a migraine anymore. I knew the pressure was not stress either. I im had to go down that road. Again, which was hard because I knew It wasn't that! I kept having a burning brain, and my right side of my spine was burning. I started getting worsening neurological symptoms. I went into full body tremmors. Very Parkinson's like, for example. Now POTS can make you tremmor, but this was much more severe. The right side of my body was effected clearly. I was put back on the IVIG after around 3months. This Is what  improved it. I was talking better and my brain on fire calmed more. But I kept feeling off mentally. Then it became very clear my anti-seizure medication was causing me severe side effects over the time of a few weeks, mentally. It also quit working for the small fiber nerve pain in my skin tissue.  Which is why I was prescribed it originally. I also got lucky to have my PCP do labwork of the levels of the Anti-seizure medication in my blood. As the "non-epileptic seizures" got worse. It came back toxic in my blood the same day I put it together, that my medicine was messing with me. Which still is weird because we never changed dosing up to that point and I wasn't on a maximum dose. All I can figure is I built an immunity to it and it stopped working. This does happen with nerve pain treatments, or my paralyzed GI tract wasn't absorbing properly and messing with the doses.  I called and we tapered off of it. I felt better once we cut the dose in half. Then two weeks later Neuro took me off of it for obvious I reasons. Well not even 24hrs later my seizures and neurological state flipped out. It got very bad. Worse then ever. I failed pretty much every neurological clinical test. It was frightening. I sometimes can't even say one simple word. For instance the word one comes out, "oh-nnn-Ee" very stuttered and slow. And then I flip my words around or I saw words that maybe start similar and are so far from what I'm thinking. I'm not getting out what I'm thinking. It comes out differently. And I get really ticked off and frusterated. The biggest concern was no visible gag reflex. And this led doctor to going towards the diagnosis of ALS. Which my heart sank into the floor when I even heard mention of that. And it was highly suspected to be the issue, it wasn't just lightly mentioned. I did go and get a blessing immediately and it gave me peace but the fear would come in miserable waves and take me down. I finally got into neurologist a week later. He does not think that's it or has ever been. (He actually specializes in ALS, so that was a releif.) He reviewed videos of the worsening symptoms, & smaller seizures that have not gotten tested. So, at this point I truly didn't care about seizures. I only cared about what is wrong? And why was I being scared with the talk of having ALS by another doctor? We did MRIs of brain and CT scans. Neuro did say I most likely have a nasal spinal fluid leak. But they are extremely hard to show in a test. That being said... I actually get releif from letting the spinal fluid drain out of my nose. So fixing the leak would likely be more of a problem then a help. When I get a build up and migraine pressure, I let it leak out and it gives me almost full releif. It's not drainage it's pure salt water and it's like being drowned under water. It's a lot of fluid. It was extremely scary when it started because uh, my body was drowning in me. Lol.  So when they fix those in patients like me, the fluid has no where to go and then high spinal fluid pressure issues come on. It's relatively safe. So leaving it alone is best for now. So that was good news. But obviously... What is wrong with me now is the big question!! I have a handful of autoimmune disease confirmed. Proof, but no rheumatologist will touch me or offer any help because, I quote, "my medical state is too complex." So I can't get a rheumatologist on board. Which is sadly common across POTS patients. Luckily prior to finding a POTS dx, I had an amazing well known, rheumatologist who was in his nineties! Study me... He did end up diagnosing me of Sjögren's Syndrome, and I had a definite dx of Lichen Planus. But he could never figure what the heck was wrong. Sure I had these other things, but something was wrong, and he worked very hard to try figuring it out for a few years. He sadly passed away and since that point, despite trying, I'm unable to find any rheumatologist in my state who wants to take me on and help me. They show me the door and say they can't. Honestly I'm thankful for their honesty. I ended up getting officially diagnosed with POTS/Dysautonomia and of course, we thought that this was the issue. It was considered rare then and doctors still don't know what POTS is, so it's hard to figure out. I do have POTS. I ended up loosing all my gastric motility of the stomach and partial of the small intestine just 3 short months after learning I had POTS. I was put on the sodium-fluid diet regimen and, I attempted cardio. (On my own which I didn't have the knowledge of how to recover from full body deconditioning.) and I did do some mast cell cocktail but about 6 months in I was told I was out of options. I nearly starved to death by the day out of my GI's negligence. But luckily TPN saved my life. It took one doctor whom I had never seen to listen to me, and I was shut down. Then we went through feeding through the small intestine and bypassing my stomach. I was very sick for years. Caught a flu in the middle of summer, and had a surgery and we joked happily I woke up a different person. I ate for the first time in years the next day after surgery and I didn't get ill. Now it was a loonngg process but I made full Remission of Gastroparesis for over a year and I also had my feeding tube removed successfully for 4 months. It would have been longer but, we were playing it safe. I was in partial remission of POTS/Dysautonomia for a year and a half until I started having some fevers and slight issues. It seemed very autoimmune. So we did Immuno supression therapy again and then that's when we started the IVIG a year ago. In Novemeber I  had a clear flare up of something. Then never was the same after this, but I got better, had some bad days... Then it hit me worse like a ton of bricks in April! We stopped the IVIG thinking it could have been the issue. It was not. I only got worse without it. I started having eye issues, my vision worsened, I had a blind spot for days, and my eye was moving uncontrollably to the left. I walk funny but not super obvious. It was always right sided until last month, I moved to the left side after they put me back in the IVIG. My right side immediately was better, the spot u had gotten on my lower right side spine cleared up. I still have issues in this side though, I drag my right leg and I have issues. I don't have the whole heal toe thing down anymore. No matter how hard I try to. I tremmor so severely I can't always hold myself up and my balance has Diminished. Is up and down throughout the day each day. It's ibe bug Rollercoaster. This past few months has been honestly frightening. I did have high blood pressure for a while. (Stroke high). Then all the serious neurological symptoms. I started having low oxygen as well, and we hoped it was a fluke thing but, my Mom caught it again the other evening when I got dark circles under my eyes and purple lips. Neuro doesn't know what to do for this or how to help it. It makes no sense. If my respiratory response is effected by POTS it's merely because my heart beats to fast for my lungs to keep up properly but, it never effects anything. Not cool lungs...   So what Neurology thinks* is happening is I have an autoimmune disease of shorts that's attacking my brain or nervous system. But what we do know is how incredibly hard to test for these things truly is! It's like a needle in a hay stack. He did not specify to one autoimmune condition or even mention which ones. But assured me not deadly. Which after the ALS scare and thinking I was dying literally. I don't mind that so much these days. Because that worry nearly gave me a heart attack. It could technically be mast cell issues causing really bad neurological issues, or both but, we don't know. What we know is in November I spent a time in the hospital with more then one neurologists in my room in the middle of the night. (We all know neurologists don't come in teams and start shoving needles into your spine for no reason in the middle of the night. I was that scary looking as in danger.) They gave me every treatment in the books for over  month to break the migraine cycle and nothing worked. My BP remained elevated  severely. I had started mini seizure-like episodes.  What broke this was IVIG. Then again months later, we did IV steroids in high doses and this had a positive response. I also had fevers. We quit IVIG in April, I got worse. Way worse. I fever when symptomatic. The butterfly rash could be mast cell or autoimmunity. We restarted IVIG and it made such a difference I was shocked, but it didn't last? None the less, a positive response. All the immune therapies seem to only help. That's what we know. Neuro. Upped my IVIG as he didn't realize I was not staying steady and on week 3 I would dip. Then on week four I'd get my monthly dose. So it was causing my system hills and valleys instead of remaining level. Easy fix we do it more often. He didn't have any magical fixes or answers but, he thinks with treatment of mast cells and starting me on an out of the country mast cell stabilizer that we will get that more controlled. Then upping the IVIG hopefully will allow me to get out of this nasty flare up. He has high hopes of remission again but, it's gonna take time and critiquing of treatments. I am going to have specialty lab work done to test for markers in my blood of autoantibodies or antigens my immune system may be throwing and attacking my brain and/or nervous system. They of there, just can help us see if something is going on and pinpoint better. But testing is hard. He wants an EEG over many days time. So he isn't convinced there is nonepileptic seizures as they only tested the new ones. (The videos were useful.) I'm curious of my body and wonder what's going on. Is it POTS or is there something new wrong? Or is it I've had this going on over the years but I have so many health conditions it hasn't been obvious until now? Here's the fun part. We don't know. But I'm pretty good with where things sit right now as far as handling it all. And I know how tricky it is to pinpoint these things. I just feel incredibly blessed to have a future here on Earth. I've almost died, but being told you really might be dying from a scary degenerative neurological disease that is not even treatable, is a whole different thing! It's awful and I wouldn't wish it on anyone ever!my heart goes out to those who warrior through such things! You are incredibly brave and are in my thoughts and prayers!  I have had to deal with a little post trauma from this but, it's getting better with time. It's been a little process. Hard to even explain honestly. I know about the sick life, that things can happen to our bodies and doctors can't alway fix it or honestly even know what to do for you. I've looked at doctors stare at me in their own fear and panick. I've had hospitalists beg me what to do because they did not know. I know how precious Healy is and how life is and that it can be taken that fast and unfortunately bad things do happen. But I know Heavenly Father loves us despite the hard times. He endures with us. He isn't punishing us, he is letting us learn and grow so we can return home to him one day. He won't always remove the burden but he can always make it lighter. There is a bigger reason for our earthly sufferings. This I do know with all my heart. We don't have all the answers now, things don't always make sense, but that's what faith is. Even if it's the small twig, it's faith. So I keep fighting and moving forwards in faith. Because we have too much life to live then to sit and worry about death. We have the plan of salvation. We know we agreed to come here and gain an earthly body so we could gain these experiences. We agreed to these hardships in the pre existing, and we know if we live righteously (not perfectly, righteously. I know sometimes we confuse the two. That's where Jesus comes into play because we are learning and growing and that typically means some mistakes along the way. So thanks to him we can repent and be forgiven.) We will be reunited to our Heavenly Father again. I know he lets the pain come because there is something better for us waiting for us on the other side of the veil,  so lovely and so great that this pain in life is worth it. So good and amazing we agreed to come here to rath and endure these hard times. I'm not just talking physical ailments but any trial in this life. So when you have a hard day, or going through a rough time, just think about how lovely the reward is going to be one lovely day, when we return home and gain the full picture. I know it will all make perfect sense. If these past hardship has taught me anything, it's that life is one big suprise and we are just waiting to get to it. We are like anxious kids at Christmas waiting and counting down the days for Santa to come bringing presents. Sometimes it's painful to wait and we think we can't, but we always do make it to Christmas day! And it is as lovely as anticipated. Ironic? Isn't it? Nope. He hears you. I promise one day when the time is right, he will bring us home, we have nothing to rush, nothing to fear. Trust in him always and remember he is there. -Chelle