ground beef

Many of you have asked for an update since we have returned from DC. Our visit was quite a quick turnaround. There and back in about 39 hours. Phew! We didn’t waste any time! 



We had a great time of food, games and spirited conversations with our gracious hosts and friends from college, Klon and Tracy and their 3 precious kiddos. 



The following morning we had our appt with Dr. Jemsek. I keep a very detailed journal called a symptom chart. After looking over my symptom chart and listening to our long list of questions, we discussed with him a workable plan. He explained that right now my brain is completely raw, like a big slab of ground beef, and I think that might be a few steps down from my usual mommy brain.
 

So, this big slab of ground beef is quite, say it together, RAW! No wonder I am having more seizures. I imagine it like that game Operation. Any neurological message that tries to pass thru cannot touch the sides or..... BZZZZZZZ.....seizure. Every time we do a round of antibiotics we are just unloading dump trucks full of of toxins right onto that big, yes I did say big, raw piece of already ground up meat. It doesn’t feel good to say the least.

So, the plan is to give me a little bit more time between rounds of antibiotics to give that big ole brain time to heal some. I know that there were lots of hopes and prayers that I would be done with the IV portion of treatment, but it looks like we are going to be continuing for awhile longer. He wants to come up with a pattern of several similar months.

I have been making some good improvements. I spend about 45% of my time in my chair, rather than 100% of time in bed. Yay! That's a big improvement in my book. I also rarely use my walker around the house. That does mean I’ve had a few falls, but it feels good to have a little more independence.



Today I tried to add in a few more household chores. I took the trash out and I straightened the kitchen. And although that was all I could do before crashing into my chair, for me, that’s progress. 



I’m working hard on getting better. That means lots of sitting, lots of sleeping, and lots of patience. I’m a doing, going, get things done kind of girl, so this has been getting harder and harder as I get to feeling little bits better and better. But God is good, and He is teaching me a lot while I wait.

life is like a bag of cuties

For Valentine’s Day, my sweet husband really wanted to get me a box of chocolates.....my head suddenly replays the line from Forrest Gump, “Life is like a box of chocolates.” I watched The Vow last week. the characters played a game very similar to that line. They had a box of chocolates and they would randomly shove one in each others’ mouth and see if they liked or hated it. It felt exactly like what Forrest Gump says in that all too insightful line, some are good, really, really good; and some are bad, really, really bad.

Oh my, rabbit trail. There aren’t any carrot cake chocolates, are there?

I think this part of my life would be considered one of the really bad chocolates in my life, the one with the goopy, unrecognizable flavor in it. *Bleeeeck!* But maybe the next one will be yummy, or even really, really yummy, mmmmmm, maybe one with a caramel and heath bar middle.....that’s what I am hoping for, but you just don’t know what chocolate God has for you next. Isn’t that kinda exciting?

Now, onto my actual box of chocolates. I can’t have chocolate. That makes that very quintessential Vday tradition obsolete. On Vday, Charles got home from work, walked straight to me, had me close my eyes and hold out my hands. When I opened them I held a very sweet card and a bag of Cuties. If you’ve never had a Cutie, you need to. It is a little smaller and sweeter than a Clementine. And if you’ve never had a Clementine, you’re on your own baby. Back to Cuties from my cutie. In unison *Awwwww*.  They aren’t as good as chocolate, but in my situation, they may as well be.

This Vday, my ever thoughtful husband turned even this bad chocolate into a good one.

psychotic

Today’s excitement; a 4 hour nap followed by the complete destruction of my dear friend, Melody’s, psyche - causing her to have a complete body and mind shutdown from the chaos of 2 girls, a handicap in a motorized wheelchair, and one of those crazy carts at Target that is impossible to push because there is a 4x4 plastic apparatus strapped to the front that supposedly makes it easier to keep your kids wrangled but in actuality is so difficult to drive that you end up cursing at your children, and that is IF they even stay in the thing.

Melody’s ruined psyche, 4 major wheelchair wrecks complete with ear piercing beeps as I tried to back up causing everyone around to stare, 3 (only 3!) trips to the bathroom, 28 threats to get back in the cart, 3 pizza hut breadsticks, 1 personal pan pizza, 1 red icee, 1 blue icee, 1 bag of popcorn, 1 diet coke, 1 iced coffee, 2 birthday cards, 3 birthday gifts, 3 valentines cards, and 1 package of school valentines later, we finally made it to the car. You would think it would be easier once we got in the car, but oh no. Melody’s psyche was continuing its gradual decline, kids were yelling, demanding, whining, bags were everywhere, breadsticks being eaten, popcorn spilling into all the cracks and crevices of her car. At least they were buckled in, but it was not much better than in the store.

And although we had a long discussion pertaining to the surprise aspect of NOT TELLING DADDY about the gifts and cards we got him, the absolute first words out of Finn’s mouth as Charles crossed the doorstep were “Dad, we got you a surprise!” Not unpredictable, how can you expect a 3 year old to keep a secret.

Melody is now looking at me with a blue plastic belt buckled around her head, she looks kinda like a mix between an Indian Chief and a Trekkie. I think we’ve lost her completely. I definitely owe her more than a bag of popcorn and a diet coke.

my man

To blame my lack of blogging on my new meds would be correct, but also a lame excuse, as excuses go. I have about 6 hrs of IV antibiotics a day right now. Yuck is right! This post may be a little all over the place as my brain is pretty foggy right now.

What do I have to tell you? Meds are tough right now, we already covered that. I have wonderful friends who help me and care for me. But what I want to tell you about today is the man I married.

  

Those of you that have met him immediately recognize how special he is, just from his smile and demeanor. He welcomes every person he meets with open arms and makes them feel at home. Even in the midst of all that we are going through his encouraging personality hasn’t changed. He is truly unique. The gifts that God has blessed him with are beyond understanding.

He is an amazing husband. With me bring so sick, he now has two jobs. He is both dad and mom. He takes care of me, the kids, the house, the bills, the laundry, the dishes, and has a full time job. I’m sure I am forgetting things about him, but he is wonderful.

Now that’s not to say its all peaches and roses. We have our problems and fights just like any married couple, but the level of respect with which he treats me makes such a difference. The regard with which he holds me is something I am so very grateful for.

I can never explain to you all that he is. You will have to meet him and shake his hand to catch even a glimpse of it.

heartbreak hotel

WARNING: ATTACK OF THE CHEESEBALL AHEAD

Today I thought my heart would break. I know, I know - such melodrama! I don’t know if the lyme is causing me to overreact or if that is just part of my sunny disposition.

As I watched Charles and the kids drive away without me, I seriously could feel it in my chest. So call it what you may - but to me it felt like heartbreak. Robyn has a gymnastics meet at Clemson this weekend. I cannot go.

Charles and I discussed all the details and decided it was just a perfect storm of events all rolled into a seizure waiting to happen. Which basically means he told me I couldn’t go and I begged like crazy, all along knowing he-was-right. Yes, you heard me, he was right.

I know Robyn wanted me there, but when it was time to go she was more concerned with finding her monkey flip flops (which I may have gotten rid of thinking she’d never notice - oops - I picked the wrong pair!) These were the tears she cried as I said goodbye. Ah, youth!

After we settled the monkey flip flop debacle, I hugged her super tight, gave her a million kisses, told her to just have fun, and let her go. She made me promise not to cry, so I waited till I closed the door.

I can’t wait for those pieces of my heart to be back in the same home with me.

wd40 and a handgun

I told someone today that I was 36. After I got off the phone I thought about it and I think I’m still 35. Then again, maybe I am 36. I’m just not sure. The middle of my 20’s was the same way. Those years just get swirled and swept around as if by a wind sprite. How do the years pass so quickly we can’t keep track of them. I mean 30 was big, 40 will be even bigger. But those middle years probably feel quiet animosity towards us when we forget them.

The big years are celebrated with such gusto. I have never gone to a “BIG 4-2” party, have you? Each decade is celebrated with a large party, sometimes an extravagant gift. Some people start their midlife crisis, dyeing their combover a dark brown and buying a bright red convertible. Some people have that plastic surgery they’ve been putting off during those inconsequential years. Yes, I can see why those middle years would be quite indignant by this lack of respect.

Maybe that is why it is in those abandoned years that things begin to fall apart. Their jealousy bubbles over and becomes a torn ACL, a sprained ankle, a heart attack, Lyme Disease........I guess it just depends on how thoroughly we’ve neglected them and, in turn, how truly vexed they are at us. Apparently, I have made mine pretty mad.

It’s not just the birthdays. A baby is In Utero for 40 weeks. Judas sold His Savior for 30 pieces of silver. There is a TV show called 30 Rock, and a movie, 13 going on 30. It rained for 40 days and 40 nights for Noah. the Thirty Year’s War, the Dirty Thirty, Jesus fasted for 40 days and nights, 40 winks of sleep, and 40 hrs in a typical work week all get their due.

It is for that reason, I raise my right hand and swear heretofore to remember that I am 35, until the 12th day of September when I will be 36.

I just got off the phone with Charles.

It is for that reason, I raise my right hand and swear heretofore to remember that I am 36, until the 12th day of September when I will be 37........I think.