Going on Medical Hiatus

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This picture was taken at Christmas, right before all of the hospital and doctor visits. Just because days have been a bit uncertain in the Elzie household these past few months, doesn’t mean that they’ve been any less filled with laughter. In our home, we cope with silly knock-knock jokes and crazy pterodactyl sounds. And wolf howls, because who doesn’t like to start a howl?

I am posting this to all of my social channels for a few reasons; the first is because while I have told people what I am going through, the details are incomplete and I prefer full transparency in all my relationships.

The second is that I will be taking a hiatus from social media. Everyone is welcome to contact me through direct message or text or email (nicolette.elzie@gmail.com). But, for the foreseeable future, I will not be actively posting.

Going On Medical Hiatus

The third is that there are many family, friends, and followers of mine that have been left completely in the dark about what has been going on with me. And for that, I ask that you forgive me. It was never my intention to blindside any of you with the information that is to follow.

Believe me, me not telling you personally has nothing to do with me not wanting to share with you and has more to do with me not knowing how to share it. It’s hard to share something going wrong with your health when you yourself don’t know and you have so many questions that are going unanswered.

Three weeks ago I was admitted to the hospital for a migraine that had been ongoing for nine days straight. The pain had crescendoed to such a point, that as each day progressed, so did the bar of my pain threshold. Just when I thought I had never experienced pain so horrendous, a new set of sharpened talons would tear into the soft flesh of my mind and prove to me anew that pain can always get worse.

For the first 24 hours, my nurses could not get the pain under control. They gave me some of the most powerful pain medicines available. The first few medicines they tried had zero effect on me. Finally, they gave me the strongest stuff they legally could. And the razor’s edge dulled from a 10 to a 9.

As you can imagine, I didn’t sleep much that first night while writhing on a sweat-soaked hospital bed, doped up on controlled substances, and my pain still registering at the atomic bomb level.

My mind was a whirr. I’d had an MRI earlier that evening, a torture chamber for someone suffering from a migraine from Hell. All I could think of was this: I’m going to die in here. I have brain cancer. Or some colossal tumor in there. Or this pain. This pain will surely kill me. Either way. I’m not getting out of here.

I’ll never see my kids again.

The hospital wasn’t allowing children under the age of 18 inside due to an outbreak of the flu. And all I could think of was not seeing my children again.

As these thoughts brought tears streaming down my face, another thought quickly replaced them all.

If I was going to die. Then I was going to do so with a battle cry on my lips.

Two things happened instantaneously as I made this decision.

The first was this. A cold iron steel of resolve settled itself over me. It was like a coat of armor fell into place. Because though I’ve always secretly feared myself to be a weak person, one thing was for certain, I was going to die a warrior. And not just any warrior, a warrior for my Savior, a warrior for Christ.

Because the second thing that happened was this. A peace that surpasses all understanding settled over me. It was as if Christ himself were right there with me, taking my hand in his, his voice telling me to “fear not”. A calm wrapped around me and the tears that lined my face suddenly dried. The ache in my chest eased, and the fear in my heart was gone.

I was no longer afraid. Of death, whether it was imminent or many many years in the future. Of some pending diagnoses or the upcoming clear results. I felt at peace, and afterward, mercifully, I slept for the rest of the night.

You’re welcome to call it what you will, but I’m going to call it what I will also. Grace. Pure unmerited favor.

When the MRI results turned out clear, and later the lumbar puncture also came back with clear results that ruled out things like cancer and tumors and meningitis and all sorts of terrible diseases that could be causing my migraines, to me, it was nothing short of miraculous.

Last Monday, I had to go back to the hospital for an epidural blood patch because I was experiencing spinal headaches where anytime I sat up or stood up it felt like someone was slowly filling a balloon inside of my head. If I were upright for too long, I’d end up fainting. This affected my appetite also because who wants to eat with a balloon blown up in their head? Now, all that pressure is gone, I am back on my feet and so grateful!

While we still don’t know what’s causing the migraines, and though I am still getting migraines daily, I finally have a diagnosis. That is a step in the right direction.

My doctor has diagnosed me with hemiplegic migraines. “Hemiplegic migraine is a rare and serious type of migraine headache. Many of its symptoms mimic those common to stroke; for example, muscle weakness can be so extreme that it causes a temporary paralysis on one side of your body, which doctors call hemiplegia.” (WebMD)

The symptoms are as follows:

        Hemiplegia: paralysis, weakness, and numbness on one side of your body

        Pain not just in your head but neck and shoulders too

        Aura: visual disturbances, flashing lights, blind spots

        Dizzyness/vertigo

        Nausea/vomiting

        Sensitivity to lights, sounds, and smells

        Sensory problems: phantom smells, sounds, sights and tastes

        Confusion and disorientation

        Balance and coordination problems

        Communication problems: slurred or stuttered speech, difficulty remembering or mixing up words

        Fatigue/migraine hangover

On Saturday, I experienced my first paralytic episode. I spend my days in near constant pain, alleviated only by naps or at night when I sleep (if I can manage to fall asleep through the pain). 

I met with my neurologist today, and we have stopped one of my medicines because it became clear that it was not doing what it was supposed to. Many of the pain medicines do not help alleviate the pain. The only one that does, does so sporadically at best and insurance will only cover a certain number per month. That’s just the reality. Our next steps right now are an MRV and a referral to the Mayo Clinic.

There is a lot that I still don’t know about what is going on with my migraines, what’s causing them and what is going to be the best treatment plan. While there is a lot that I don’t know, there are a few things that I do know:

I know God’s power. I have already felt it. I do not feel distanced from God just because I am sick. I feel Him very closely, in fact. I also know that I was made by God for a reason. I was made by Him to do a great work. I know he has given me gifts and I know what those gifts are. I know that I have too many stories to tell and that I only have one lifetime in which to tell them. However long that lifetime may or may not be.

And yes, I do know that he can heal me. I also that he may not. I have accepted that. I ask that you accept that as well.

That acceptance doesn’t change anything. All it does is help you help me.

Because here is the truth too: we are still seeking answers. We are still fighting. We are not going down without a fight.

Here is another truth: the sooner you stop looking at me like I am an injured deer, the sooner I will pick myself up off of this floor, and don my armor and sword and fight like the warrior that I am.

Last truth (no really, I promise!):

Every moment is a gift.

Every moment is a chance to do something.

To be something.

To live for more.  

Please, don’t ever let me forget that.

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