Embracing Uncertainty

I definitely hit the in-law jackpot when I married into my sweet husband's family. Although a bit strange at times, they are some of the most loving, caring people I have ever met. His family decided to hold a family fast today on my behalf. One of my brother-in-laws and his family just called me on FaceTime to let me know that they loved me and that all of them, including my sweet nieces and nephew, fasted for me. Which is not an easy thing to do as an adult, let alone when you're a child. I am so deeply touched by their faith and their love for me. I do not feel deserving of any of it but I am so incredibly grateful for each one of them nevertheless. I know many are praying for me. Thank you from the very bottom of my heart. I feel your prayers and my Heavenly Father's spirit is so near. 

My back is still sore. I was told that the pain should have gone away by now. I'm hoping that it doesn't turn into something else or becomes a chronic problem. I heard back from my doctor's nurse that my doctor is gone on teaching assignments and the soonest appointment they had is on September 30th. So, more waiting again for the next step. You would think I would be used to this by now but I was pretty irritated.

I recently listened to a podcast that really wasn't referring to health problems but being in the circumstance I am, I took it that way. She talks about embracing uncertainty. "The only thing that is certain is uncertainty." I think the hardest thing for me is not knowing what I'm really up against yet. I decided to research that a little more and this is what I'm going to try and do to embrace uncertainty:

*Go slow and lean into the pain - I want everything to hurry up so I can avoid the pain and unpleasant feelings that keep surfacing. Instead, I am going to work on leaning into those tough feelings and try to understand them. This also involves taking a break when I need it to build my strength too.

*Giving myself permission to relax and let things take its course - There is a lot to think about and stress about. I frequently find myself playing the "what if" game. Here's the thing, things are going to happen the way they are supposed to whether I stress about them or not. So, it's just not helpful to stress.

*Have faith -  Sometimes faith can be easy and sometimes it can be so dang hard. Just got to keep trusting in Him!

Pain in the Head

I have been very lucky, I have never had a migraine and have not even had that many bad headaches in my lifetime. I think I got to make up for that this past week. Since last Friday after my lumbar puncture, I have had what they call a spinal headache. When they did the lumbar puncture, the hole that the needle created in the membrane surrounding the spinal canal did not seal properly. The spinal fluid was leaking from the hole into the nearby tissues. This causes there to be less fluid around the brain and results in a spinal headache which you might as well call "headache from hell". The only relief you can get is from lying flat on your back. No amount of drugs will even touch it. I continued to work during this time, lying down any chance I could get. It got a little ridiculous. I finally contacted the nurse and ended up having what is called a blood patch today.

A blood patch involves taking a sample of your own blood and injecting it next to the puncture hole. It forms a blood clot that presses against the hole to stop the leak. It hurt like heck but my headache is about 90% gone now. My back, however, is a different story. But, hopefully, that pain will go away as well. My poor kids, one parent is in a different state and the other has pretty much been bedridden. They have all been pretty good about the whole thing and have helped their momma out so much.

Trust in You

I won't lie. Today's appointment was difficult for me. Not really sure what I was expecting but I walked out feeling a bit blindsided. I met with a neurosurgeon today. He looked over my MRI scans, bloodwork, asked about my history, etc. The term he used to describe my pituitary stalk was "grossly enlarged". He said it still could be an array of different things but he did not believe it was lymphocytic hypophysitis by the look of the scans. (That was the condition my endocrinologist was leaning towards.) He said it could still be an inflammatory autoimmune disease or some sort of tumor. He also said it is possible it is not a pituitary tumor at all but actually a brain tumor that has settled into my pituitary. This has never been on the table before and quite frankly scared me. He said the first thing he wanted to do was a lumbar puncture and some more blood work to see if anything shows up. If nothing shows up, he said he would definitely want to do a biopsy. The impression I always got from my endocrinologist was that the biopsy was risky but it didn't mean I would lose all function of my pituitary. My neurosurgeon said because I've already lost my anti-diuretic hormone and my sex hormones, I would be guaranteed to lose the rest by doing the biopsy. Which, he said, I'm already headed in that direction anyway. He said he wanted to get on this right away and I agreed. The lumbar puncture was done right there in the office. I should hear back on that in a week.

It was a lot to take in with phrases like brain tumor, loss of all pituitary function, grossly enlarged.... I'm still processing it all. So much still left unknown. I keep trying to go on with my life since this all began a year and 3 months ago but keep getting taken back off track. I continue to have an amazing support group between all my family and friends. My husband has been working 500 miles away for the past month or so. That's been difficult for both of us but I never feel completely on my own. My family and friends are always there for me, near and far. It still blows me away how much you care. Thank you from the very bottom of my heart.

I also keep trusting in my Heavenly Father and Savior whom I know are right by my side and have been since day one. I love the song 'Trust in You' by Lauren Daigle. It describes exactly how I feel so perfectly.

Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see

I've tried to win this war I confess
My hands are weary I need Your rest
Mighty Warrior, King of the fight
No matter what I face, You're by my side

When You don't move the mountains I'm needing You to move
When You don't part the waters I wish I could walk through
When You don't give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

Truth is, You know what tomorrow brings
There's not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less

When You don't move the mountains I'm needing You to move
When You don't part the waters I wish I could walk through
When You don't give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

I will trust in You!
You are my strength and comfort
You are my steady hand
You are my firm foundation; the rock on which I stand

Your ways are always higher
Your plans are always good
There's not a place where I'll go
You've not already stood

When You don't move the mountains I'm needing You to move
When You don't part the waters I wish I could walk through
When You don't give the answers as I cry out to You
I will trust, I will trust, I will trust in You!