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