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!