EEG Testing and my downward spiral (part 1)

I came home to testing. Lots and lots of testing. The first was an ambulatory EEG test that required leads all over my head and looking like I just had brain surgery along with an EKG hooked to my heart so they could monitor my seizures and heart rates.

A couple of hours in and I had a migraine. Massive migraine. It hurt. Then came the struggle to swallow and the breathing issues. So much so that even after a blessing, my breathing didn't come with any ease. I was panicking and headed into a panic attack....a huge one. Thomas loaded me and all my equipment into the car and headed for ER. I figured in my get up that I would certainly get back right away. Not so lucky. I waited as my breathing continued to get worse and worse and worse. I went to leave ER and they stopped me. But what do I do? I desperately needed oxygen. The monitor may say 97% but my toes and feet were purple from no oxygen.

They finally moved me into the ER next to the doctor station. An ER doctor saw me and my struggle to breathe and grabbed me. He said he requested me because he had never seen anyone looking so weird walking into the ER. He wanted to know what they were doing to me and why. He came in before any nurse or LPN. He listened. He wanted to know my history. I just wanted oxygen.

He tried to give me steroids and benadryl. I told him I already took three doses and had been for days. He stopped two medications and questioned the EEG machine. However, It took hours to get the IV in. After blowing multiple IV lines, they finally secured one in my inside wrist. Wowzers did that hurt. As they tried to pull blood, it collapsed. Then they started one in between my two fingers, the pinky and ring finger. OUCH! Too bad that the blood coming out would clot before they could get it out. No blood work for me. The doctor finally told them to start giving me shots as IV lines were failing. Finally a PIC team got one in between my fingers to hold for meds but nothing else. Massive doses of steroids and benadryl later and I could swallow and breathe.

I headed home unsure what to do. And still miserable.

Saturday the results were the same, migraines, struggle to breathe, unable to swallow and frustrating pain. Indescribable pain. How can an EEG hurt? I have had so many?? Yet the pain and aching is so intense.

By Sunday morning, I could no longer endure the pain of it all. I was absolutely miserable...As we took off the EEG, we found out why. My face had burns from the EEG being too tight and allergic to the gel. Burns that scabbed over and scarred. Then when Thomas unwrapped my head, blood. I was bleeding and skin ripped off. Oh the pain. The raw skin with the shampoo. Ouch doesn't describe the incredible pain.

Now, I was dealing with pain from the after math of the EEG and withdrawals of the heart and brain medications. Oh was it one hell of a week as my body went through withdrawals of hard anti-seizure meds and medications that keep my heart ticking correctly. They also stopped the paralysis medications which increased the side effects of paralysis.... more struggling to breathe. The viscous circle had begun... which thru me into a huge flare.... which made all of the symptoms worse.... which made me feel more and more horrific.

The perfect storm had started and I had to ride it out. No short cuts.... nothing to ease my pain..... nothing to stop the flare....no help.....no relief....no breaks ....which in turn created no sleep....no rest... sheer hell was all I could use to describe the horribly down-slide I was in. How to stop it? How to get help? How to find relief from the doom?

I was hoping for days but weeks continued at this pace... more anxiety from withdrawals from medications... more nausea.... more vomiting cause my medications wouldn't stay down. More struggles and more pain than I can describe. My body would shake with revolt. My head pounded. My arms shook. My legs became restless. (I wondered why anyone would ever do drugs if this is the down and withdrawal...simply stupidity. This was worse than any pain I could imagine.) I was withdrawing from seizure medications and brain medications and heart medications and medications to ease the paralysis... not anything I could do about it. Nothing taken for fun or by my choice.


My days continued to grow dimmer by the minute. I struggled to find a moment of peace. I struggled to get air. I struggled to find hope. I struggled to find anything or any reason to continue fighting. I wanted to give up. I wanted this fight to be over. I wanted to throw in the towel and say that I had given my all and there was nothing left. I had no hope.

What happens when we find ourselves that far down and that utterly done with life? The adversary steps in. He takes hold of what is left and tries to turn it against you. He tries to throw those fiery darts that are discussed in the scriptures, and pierce you to the very core. I felt on top of the struggles I was facing that the adversary and all evilness itself had determine to plague me with even more discouragement and pain and nothingness.

With the medication changes making me crazy and not knowing what was real, the adversary convinced me that I was not loved nor lovable by anyone outside of Thomas and Hayden. I was convinced that no one would care if I was never seen from or heard from again. Convinced that the only two even at my funeral would be my dear Thomas and beloved Hayden.

Then events happened that would seal that in my mind. Loved ones that I trusted felt distance. My church that had been such a strength was too busy for me. Those that I had just entrusted to help me and turn to, informed me they were too busy.

I was sitting here wondering if I died, if anyone would even pause their lives for a moment to help comfort Thomas and Hayden. I was convinced I didn't matter but was holding out hope that my precious husband and cherished son did matter to them.

Yet, at every turn that I reached out, doors were slammed closed. So much so that I didn't trust anyone or anything, even my own thoughts. I was in the deepest of all despairs. I was beyond rock bottom.

I cancelled all doctors appointments. I cancelled all activities. I cancelled all testing. I cancelled all treatments. I quit trying. I quit living. I was just enduring and pleading for it all to end, one way or another.

I could never do anything to hurt Thomas and Hayden. Absolutely nothing. I never would. I want them to have all the love and peace and joy the world has to offer.

So I simply held on as tight as I could. I would plead for help. For the Savior himself to come lift me or for him to send help from anyone in any way. I laid in bed pleading for someone to come to the door. I rocked on the couch, asking the Savior if anyone in this entire world cared, for them to show up at the door. I plead for all those that have brought in meals and dropped by and done so much for me in the past,  to just come. To show me in some small way that I still mattered. that my life was worth living. That I wasn't entirely alone and unloved.
I prayed for the bishop or anyone in the ward to show up... I would have welcomed a complete stranger. Yet help and peace and hope and love did not come. Only pain....deep, deep rooted terrible pain and loneliness.

I started to wonder if this is all I had left. The three of us and it would be us vs the world and us vs the dark one himself. I knew I couldn't do it alone. I knew I was in way over my head. I knew that if my situation didn't change quickly that my finger tips were slipping and I was fading. I knew without divine intervention or our Savior sending someone, somewhere to my rescue that it would be too late.

I wondered if I should bail out of the boat before I took out Hayden and Thomas with me. I sat up all night long pleading for relief or if no one cared and help and easing my misery was not possible then please... simply let me die.

And still another several days passed as I slipped deeper and deeper into a despair and dark place that put so much pressure of my heart that I could barely breathe. I knew I had never been this low, in such a dark place and so utterly frightened and scared to death. Isolation and complete utterly lost........is this how my story and my fight for life for so many years would end?

I couldn't bear the thought of this life....so I pleaded and prayed that sleep would overcome me. Restless sleep came and I was grateful for even the small moments of relief.