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.)