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Week 22- How in the World do We Explain This to People?!

"How in the world do we explain this to people?!"
Steve said.

It was a few days ago. I was fine, then someone came in the area I was in and BAM!
My reactions.

Can't hold my eyes open. Can't walk. Can't stand.
Can't sit up.

We left the area and Steve asked the question.

"We tell the truth." I replied.

It's what we have done the whole time.

We don't share everything. 
But what we share is 100% true.


So here we go.....

Picture a graph with a curve.

 


Now when I left TN, imagine that I was in the far left corner of that graph. Since leaving TN, I have had one goal:

CLIMB THAT POWER CURVE

Now I have intentionally not drawn a straight arrow because anyone who has a chronic illness knows, it just doesn't work that way. I have, however, been on an upward trajectory in my recovery.

When we first left TN, we stopped in Oklahoma. We stayed in a couple of different locations there and that's when we really started coming back to life. I celebrated my 39th birthday in Oklahoma. It was the best I'd ever had. Not because I was surrounded by family and everything was better.
No, because I saw, even as a woman whom the doctors had given up on, that the story wasn't over yet.

Here's the way this recovery works:

You have to find an area that's good enough. This area of Oklahoma was a lot better then where I came from and so I came to life. We managed to stay close to a week and then saw that I was slipping. That's when it's time to leave. We call it falling down the power curve.

Next, was Texas. Texas was really good to me. I came to life even more! I started to show my boys how to swim. I was playing and laughing. It was amazing. 

 

The big thing we noticed is that we really had to keep me in a bubble. Steve didn't let me anywhere out of sight because I could collapse without warning. The wrong person could put me on the floor and it happened pretty frequently but I was improving more day by day. We stayed in Texas about 7 weeks.

From Texas we headed first north, then west. We tried Oklahoma again, still a no go, so we headed to New Mexico.

We didn't really find a great area in New Mexico our first time through so we moved on to Arizona.

Arizona was GREAT for me. I saw even more climbing in Arizona. I was able to start homeschooling the kids when the school year started. Steve started letting me get out of sight here and there. The people who took me down were few and far between- far less than we had experienced in Texas. We got there in August, the time of the year when almost no one wants to be in Arizona, but I was thriving! I've always loved the heat and sun (minus heat intolerance I had my last few summers in Tennessee).

And then God gave us a wonderful gift-

FRIENDS!

Shawn and Evan were from the area but Evan had surprised Shawn with a stay at the hotel so that she could use the hot tub. We hit it off! We had a few amazing weeks of hanging out and laughing together. For someone who was having to avoid practically everyone before leaving TN, this is one of the greatest gifts God could have given me.
We spent almost 2 months in Arizona.

My health started taking a dive again and I knew it was time to move on. This is what led to our greatest experiment of all- trying the Southeast!

We crossed into Arkansas and I think both of us were expecting something bad to happen, but it didn't! From there, we went to Mississippi.

Mississippi was amazing! Did I just say those words? I was cautioned to stay in the Southern part of Mississippi and wow- it felt fantastic!

We only stayed in this location for about a week. The location was great for me, but they booked up every single night so it was hard for them to accommodate my need to change rooms. On top of this, they were getting ready to start a remodel and Steve was really nervous for me to be in a hotel while they were opening walls.

We have driven through parts of Arkansas, Mississippi, Alabama, Georgia and Florida. We are right now in a small coastal town where I have absolutely thrived... Until a few days ago.

This time, however, is different. Every other time it hasn't been so much that the area that I was in changed. I did. I got to the point where I had healed as much as I could in that location. The way this works, as I have learned from those who have gone before me, is that as you heal, sometimes you need better. That said, once you have done a tremendous amount of detox and healing, a lot more possibilities are open to you- the goal is to get high on that power curve. That's the goal I'm working toward now.

So what's different about this time?
The air outside still feels great to me. However, I have detoxed so much that it has worn me down and made me weaker. My reactivity is now up (when it climbs, it's usually a couple of weeks before it calms down.) 
In short, I need a break from the epic detox. On top of this, we have now been through 25 rooms in this hotel. That is solely because of detox. It might be good to leave for a while and allow things to "die down."

And, because my reactivity is high, that led to what happened today.

This morning I got up, made breakfast and took a shower. That was my first one of the day. 
We went downstairs to homeschool the kids in the lobby. There was a woman and her children in that room that hit me- hard. I started feeling it. My legs were going, I was getting weaker. We couldn't go back to our room because I was reacting to how much we detoxed in there and they were cleaning another room for us. 

When they told us our room was ready, I was shot. I was cold, weak and tired. We went upstairs and within a few minutes I realized that I was going to have to take another shower. Shower and clothing change #2. I had to wash my hair 5 times before I wasn't reacting to it.

I told Steve that I would prefer if we just rested for the rest of the afternoon in the room. I was tired. 

Everyone went ahead and took their showers. Reese went to bag all the dirty clothes and get them out of the room. He came back in and I passed out. I reacted just from him touching the dirty clothes. He had to take another shower.

Steve decided to order food for him and the kids for dinner. I was weak and tired so he was trying to be nice. Unfortunately, that backfired. 

Steve ordered pizza for himself. The delivery man was a very chatty man who had moved here from Maryland. He stood there talking to Steve for about 5 minutes. I felt my throat swelling up and couldn't figure out why. Steve kept the door open while talking to the man. That was a huge mistake.

Steve finished and sat down to eat and I started feeling worse and worse. Steve got the pizza boxes out of there which helped some but not enough. The man must've had a really bad vehicle. I realized that I had to take yet another shower. Steve went to get me another change of clothes and I went to take shower #3. 

I started washing my hair and - relief! My throat went back to normal. The swelling went away almost instantly. I got out and opened the door. I walked toward the bed and Steve said, "Are you feeling better?"

"Yeah," I said. 

I took another couple of steps and hit the ground.
The thing about my passing out episodes is that I'm not actually passed out. I just look like it. I can hear everything, but I can't respond. 

Steve carried me over to the bed. I was completely limp. I couldn't help at all.

"Megan! Do you know what it is? Do you know what's wrong?"

"Lord, I prayed. Show him it's the room. I can't respond."

I started convulsing. He picked me up and carried me to the bathroom. I could sit up a little on the toilet but I could barely keep my eyes open and my responses were unintelligible.

"Megan. Do you know what it is?"

I mumbled some gibberish.

"The room? Are you saying it's the room?"

I was barely able to shake my head. I didn't even understand me. I have no idea how he did.
He carried me out into the hallway where I could immediately stand almost completely on my own. I was weak but I could walk and talk normally.

"I can't believe we have to ask for another room. I hope they aren't booked." Steve said.

This illness is embarrassing.

I go down with him to talk to Nik at the front desk. I walk up with Steve and someone walks up behind us. I hit the ground. Steve pulls me up.

"Uh, is everything ok?" Nik asked.

"No," said Steve. 

And he proceeded to apologetically give the cliff notes version of what happened to her and ask her if we could change rooms. 

"I don't care if it costs more," he said. 

I don't think people have any idea what Steve does for me.

We're in the room now. I have taken shower #4 and changed my clothes again. It's been an expensive day. 

I was thinking about this whole situation as we were waiting to talk to Nik. I felt anger rise up in me. 

"Why do I have to have a freakishly weird illness? Why do I have to defend myself? Will I ever beat this?"

And I had this quiet assurance.

I am the Lord's. I am His to do with as He pleases. He's been gracious to me and I am healing. And it is hard. And it has absolutely destroyed my pride.
Praise God. That needed to be destroyed anyway. 

And so I give you this incredibly detailed look at our life. I share plenty of praises and good days. But I'll share the bad too. All for His glory.

Because I am the Lord's.

In Christ,

Megan


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