Disney Trip 2016 - Final Thoughts!

This is the final post of my Disney trip report! To start from the beginning, click here!

The whole reason I started planning this trip was an incentive to recover after I got very sick and had a bunch of seizures. It was a scary time for me and having just the thought of Disney World helped me along. It also helped me get stronger. I spent a lot of this year at the gym, walking and doing weight training. It really paid off because even though I was walking many miles in a day, I wasn't really sore the whole week.

Of course, we also celebrated Emily's birthday since she happened to be born in my favorite month of the year. She got a lot of attention from her birthday button and she loved that!

This trip was a lot of firsts for Emily. First time at Epcot, first time on a roller coaster and first time going to the Halloween party. She enjoyed it all which made me happy!

My favorite part was finally getting to wear my Tightrope Girl costume to the Halloween party. I got a lot of compliments on it, especially from cast members.

Even the hurricane was interesting. It was a little scary but I hoped that Disney would do their best to keep us safe. And they really did and did their best to keep people entertained while the parks were closed.

I also want to give a shout out to my travel agent, Sara Varney at Mouse Fan Travel. This is the 2nd trip she's helped me plan and she's a really good travel agent. She got all of our dining reservations that we wanted and even called us the day before the hurricane was suppose to hit to make sure we were ok. Fabulous customer service right there!

All in all, Disney World still retains its place as my most favorite place in the world! I can't wait to go back hopefully in a few years!

Thanks for Being Alive

Image: coolrain44.wordpress.com

Thanks to my Timehop, I figured out that two years ago today was the day that I had my seizures. I don't remember the seizures, but thinking about fills me with dread. Just the fear and confusion that I do remember upon waking in the ICU the day before Thanksgiving is something I wouldn't want to go through again.

So I'm feeling thankful to be alive. I don't think the seizures would have killed me, but it's possible. It's more likely that my demise could have been brought about by all the falling down I did. I had a bunch of bruises that I didn't really notice until I got home from the hospital and one in particular was huge.

Sadly, because my many doctors still have no clue why it happened beyond the mass that was in my brain. And because they don't know what really causes the stupid masses that pop up every once in a while, it's hard to predict if or when another attack might come.

But I forge on, living my life. I'm in a lot better shape than I was even last year at this time. I try to do my best to be able to take care of myself and make myself stronger. This year, I started weight training and that has helped a lot!

There are a lot of things I'm thankful for this holiday season, but being alive is pretty near the top!

Stamina and Dragon Con

The last few years, I've done one post about the negative things I'd experienced during that year's Dragon Con. I didn't really have anything negative happen so I thought I'd talk about something different this year.

In November of 2014, I had a bunch of seizures and ended up in the hospital for ten days. It was horrible and when I got home, it took a long time to recover. I spent several months really weak and groggy until my neurologist got my meds sorted out.

I spent most of last year trying to get my strength and stamina back. I couldn't walk on our treadmill for more than five minutes without getting winded. I had some balance issues and overall was just really run down.

At the start of 2016, the first day in fact, Todd and I joined the Y. At first, I would just go swimming and use the walking track. It was hard because my body was so out of shape, but I kept at it. After a few months, I also started weight training.

I've only lost a few pounds but my stamina seemed to have come back for the most part. But it wasn't until this past weekend at Dragon Con that I realized how much my stamina had returned.

Dragon Con, for those who don't know, is a huge geek convention held in five hotels in the middle of downtown Atlanta. Most of the hotels are close together but there is always a ton of walking that happens.

Last year's Dragon Con was rough. I didn't have a lot of strength and the constant walking made my legs very sore. I tried not to push it too much but I ended up feeling very sick by the time the con was over.

This year was a different story. We got down to the con fairly early on Friday and even with a ton of walking during a very full day, my legs weren't sore at all. They got a little sore over the next few days, but nothing like years past. All that working out is paying off!

Not being sore and tired really helped me enjoy this year's Dragon Con that much more! And hopefully next year, I'll have even more stamina and strength.

Mourning Memories Lost

A lost memory

As I've talked about before, I was very sick last November. I lost five days and woke up in the hospital the day before Thanksgiving in the ICU after having a series of seizures. Those five days are completely gone, though I'm not missing much - according to my husband, I mostly slept.

My brain is weird. That's pretty much the only diagnosis I've ever gotten. This is the 2nd time I've lost time, but this case was different. For a while, I didn't remember much of everything from last year. A lot of those memories did come back, but I knew the closer we got to November, I would get to a dead zone where I didn't remember much.

Memories are very important to me, probably in part because my mom is passed away and I don't have a ton of pictures of her. She is suppose to live on in my memory and she does - thankfully my long term memory was not affected.

For a while after I got home from the hospital, it seemed like every day I was finding something that I had forgotten. I was so excited to watch the movie Divergent again because I did remember that I had loved it in the theater, but when I started the movie I didn't remember any of it.

It's been months since I've experienced finding out something I forgot until last week. I saw on Facebook that one of my online friends had passed away, and thanks to the Timehop app a few days after that, I saw that I did know that he had died, but I had forgot.

We weren't close friends. Mostly online friends who met a few times at local Browncoat events but I felt extremely guilty that I had completely forgotten that he was gone. It's silly I know, but that's how I felt.

It also means that I'm in the dead zone now. From now until the day before Thanksgiving, my memories of last year are fuzzy at best. And a lot happened in October of last year that I wish that I could remember.

The only thing I can really remember about Emily's birthday is running to the dollar store near our house, but I don't remember why. The only things I remember from the Browncoat Ball is playing Cards Against Humanity with lots of people including Mikey Mason and then feeling sick to my stomach during the dance itself. Halloween I don't remember anything.

Because I had gone through the memory merry-go-round earlier, I didn't think it would be a big deal when I got to this point. But I realize now, that I'm still mourning for the lost memories. Thankfully I'm a big fan of social media and taking lots of pictures, so I've pieced together some of what happened. But I just don't remember it.

I'm sure I'll get over it, but the next few months may be harder than I anticipated. The healing just continues. I'm going to try and focus on making new memories as well.

The Med Merry Go Round

Merry go rounds were more fun as a kid

I've never done drugs of the illegal variety. A boyfriend in college wanted me to try pot - in part to see how loopy I'd get. But that never happened. The main reason I've never done illegal drugs is because the legal ones mess me up so badly.

I have a lot of drug allergies. Lots of hives and other bad reactions. I basically missed Spring Break my senior year because of being on the med merry go round and I just had something easy - the flu I think. I was woozy and really out of it because they kept changing the medicine they were treating me with.

When I was in college, I ended up in the hospital. I was home from Christmas break and it was that time of the month. I also had an upset stomach. So my mom gave me ibuprofen and Pepto Bismal. I broke out in hives from head to toe. I was so swollen that I had to wear slippers to the doctor's. He took one look at me and sent me to the hospital.

This was all before my chronic pain started. I was on the med merry go round for nine months at the beginning of my chronic headaches. In the end, nothing worked and I just found home remedies to help me.

But with the seizures, I can't not be on medicine. The first medicine that they gave me in the hospital was given to me because it was the only anti-seizure medicine that comes in IV form. But it's been making me feel really tired. So my neurologist put me on a new medicine, but I have to be on both for a bit to wean off the first stuff.

I really, really don't want to have anymore seizures so I willingly got back up on the med merry go round. And I feel like I'm on a literal merry go round. The first day I took it, I was so woozy I couldn't walk straight but my brain was really fogged up as well. I would try to talk or type and it wouldn't come out right.

That's gotten better but I'm still lurching around the house like a drunken pirate. I have a little under a week until I'm weaned off the first medicine. I hope and pray that it will make me less tired so I can get off the med merry go round.

All I want is to get back to some form of normal. I still have pain, but I'm used to that.

The Perks of Working from Home

My workspace

You may or may not know that I work from home doing tech support. I've done this since August 2012. I work tech support and it's like any other call center job. But working from home has a lot of perks.

This first one isn't really a work from home perk but it's a perk. My boss is great and understanding. My coworkers are funny and help the day go on. And yes, I have coworkers. I'm on a team and we can talk in a chat room. We have one room for business stuff and another where we can talk about anything - and we do when it's not busy.

One of the biggest work from home perks for me, is I can work in my pj's. And I do. With all my health issues being comfortable while I work is really great. I can also work in the dark and there are no bright fluorescent lights. This really helps a lot with my migraines.

After my seizures happened last month,  I was told that I wouldn't be able to drive for three months. If I worked outside the home, I'd be screwed since Todd works 2nd shift. But since I work from home, it's business as usual. I did ease myself back in, thank again to a great boss, but I've been back full time for a couple of weeks now.

Working home works great for me. It seems like more and more people are going that route as well. As someone who has chronic pain, it really helps me be able to be comfortable, be able to crash into bed after my shift if needed but still make a living to help my family.

The State of Mandy

I may do these posts from time to time - in part so I can see how my recovery is progressing.

It has been a little over two weeks since I was let out of the hospital. Since then, I'm back to work full time. I'm very thankful that my job let me ease back into working by letting me do half days the first week back. And I'm thankful my job didn't try to fire me. I know there are jobs out there that would have - I've heard the horror stories. But I have a super boss who's been great throughout all of this.

The depression is getting better since I'm bad on my antidepressants. I have up days and down days but it's not the black cloud of doom I felt before. If I didn't have Todd and Emily, I may have been suicidal before - that's how bad I felt. But thankfully the pills are helping. Now the depression I feel is situational, because this situation sucks. But it's not as deep and black which is good.

I'm still pretty tired. Not as bad as the first week in December. Even working half days would wipe me right out. I did way over do it on Sunday. We went to church and went early because the choir I'm in was singing. After choir was Sunday School. I go to the Blessed and Stressed class and now that Todd has to come, he goes too. We are blessed but certainly stressed. It's a class kind of geared towards parents trying to juggle everything.

We went home and just vegged for a bit before Todd dropped Emily and I off at the Mountain Play Lodge for a birthday party. Todd had mixed up the dates and had volunteered to work on a friend of a friend's car. So I had to go with Emily while Todd worked on the car.

I mostly sat in the nice chairs they have but Emily would want me to come see what she was doing. I would also do my normal thing of take some pictures of Emily. Todd did come just before pizza and cake time. It was just brakes and he's really good at that.

Things were starting to get spinny at that point. I ate some pizza, and then some pie and ice cream. Not because I was hungry but because I was hoping it will help stop me from feeling so weak. It didn't. After the party, we went to the grocery store, and got some food. I had to hold onto the cart and Todd had to steer to. But we made it through and I ended back in bed.

I've been feeling a little better since then but still majorly tired. I have a bit of a cold which is not helping but trying to get over that too. It's winter and I have a kid so that's going to happen.

The memory issues are still plaguing me. Not much change there. Memory lapses like passwords still happen and I'm still glad I'm not allowed to drive. Around the house, I don't have issues but out and about I still have flashes of 'where the heck am I?'

Sadly I realized the last few days that I don't remember hardly anything from the Browncoat Ball, Emily's Birthday or Halloween. Makes me sad but not trying to push it. I'm staying away from pictures of all three because I don't want to overload myself.

Christmas is fast approaching and I'm feeling better about it - at least more than when the dark cloud of depression was handing over me. But honestly I'm ready for it to be over and for it to be 2015. I'm ready for a new start.

But I'm very thankful for all the family and friends who has been so supportive of us. I really, really appreciate it

On Memory Loss

Image: blog.foodnetwork.com

So the worst part of this whole aftermath of the seizures is the memory loss. To simplify, I say it's short term but it's not exactly that. Things a year ago and before - I can remember with the same clarity I did before. After that, it gets fuzzy in bits.

The day before I had the seizures. I don't really remember. I know, thanks to Facebook, that I took Emily to a Christmas festival thing. The day I had the seizures until the day before Thanksgiving, I don't remember at all.

I have vague memories of waking up in the ICU. I don't think I'll every forgot the feeling of discomfort and horror at the catheter. I also vaguely remember that the TV was huge in the ICU.

Once I woke up and they recognized that I was lucid, the catheter was taken out and I was moved to a regular room. I have dribs and drabs over the next few days. I slept a lot and watched a lot of movies. I do remember Thanksgiving and watching the parade with Todd and Emily and then the Lions. And I did have turkey for dinner. My aunt Sue and uncle Gary came to visit me and I remember that too - but all the days all kind of ran together as they do when you are in the hospital.

Since getting out of the hospital, it seems like every day I've forgotten some major. They come back to me, here and there, but there are still a lot of gaps. And I forget the strangest things.

If I'm standing up, I'll just turn our TV off in the living room off at the TV. I could not remember how to do that. I started up a movie that I love, Divergent, that I saw in the theater four or five times, and it was like a whole new movie.

And then there are the passwords. I've had to start a word file of all the passwords I keep forgetting, mostly for work, so I'll have them when I forget them again. Even outside of word, I think I've had to change my password on everything at least once. Passwords are not sticking at all.

Finally I have teeny tiny memory gaps. Todd always comes in my office before he goes to work to get his shoes. I'm still working to I hear him. Today I didn't so I took my break and had to go ask Emily if Todd had actually gone to work - he had.

I'll be doing something or standing somewhere, and I'll completely lose my train of thought or where I am. And it always takes me a minute to get my bearings again.

Todd doesn't think this should be a big deal but I HATE it. I'd rather have a level 8 migraine instead of dealing with the swiss cheese brain.

I know it's temporary but I do not look forward to several more months of this. I totally understand why I'm not allowed to drive though.

Seizures and the Hospital

The worst of the bruises

The day before Thanksgiving can be a hectic one. This year, it's one I don't remember much of. Because the day before Thanksgiving, I woke up in the hospital.

I had been in the hospital already for five days. I had been seemingly awake but in no means lucid. I had fallen several times and had been having seizures. I have no memory of those five days. I do have the evidence though - I'm all bruised up from the falls, especially on my right arm.

I think waking up in the hospital, in the ICU, with a catheter in, was about the scariest experience of my life. I was disorientated and scared. As soon as they saw that I was awake and out of the seizure woods, they moved me to a regular room and they took the catheter out. There is nothing so great as being able to pee on your own.

I spent the next five days in a regular hospital room. That included Thanksgiving but I wasn't too sad about that. We don't have cable at home but cable was available in the hospital so I could see the parade and the Lions play. It was also extremely weak so I knew I needed to be in the hospital at first.

Since I had been taken by ambulance they took me to the closest hospital which was Park Ridge. I would have rather been taken to Mission but it wasn't my choice. Park Ridge was ok but it wasn't Mission either. After a few days in a regular room, my meds were weaned off. That was ok, but they still weren't wanting to let me go. I was also having extreme issues with the IV's.

I give blood several times a year and because of this I know that my veins are small and crappy. So I got stuck a bunch of times in a bunch of different places. One night I got no sleep because every time I'd move, an alarm would go off. It was awful!

I did have some visitors. Todd and Emily mostly - they came every day, at least the days that I can remember. My Aunt Sue and Uncle Gary were awesome and came all the way from GA on Sunday to visit me. It was nice to see them.

Finally by Monday I'd had enough and I was leaving come hell or high water. Thankfully the doctor saw no reason to keep me any longer and actually willingly discharged me. I got out a little before noon on Monday. There is nothing like ten days in the hospital to feel heavenly!

I'm still on the mend. I went back to work yesterday but my boss is awesome and letting me ease into work. Today was better than yesterday and I'm sure it will just get better. I have a bunch of doctor's appointments to look forward to and I'm sad this happened in December. Hopefully I can still make it a decent one for Emily and I feel very blessed that a coworker of Todd's gave us a tree - it's new and in the box still!

That's what happened to me and I pray that it never happens again. I don't think I've ever been so scared in my life.