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.

Goodbye 2014, Hello 2015

So I usually do a year in review and do goals for the year. I'm going to do this in shortened form this year.

2014 was sucky. MS for Todd, then he lost his job in March. He did find another job that was less stressful but it was a rough start to the year. The middle parts were ok, I think. Most of it's still a little fuzzy. But Dragon*Con, Browncoat Ball, Emily's birthday and Halloween were good.

Of course then I got sick and I'm still recovering from that. Christmas was good but I overdid it and had to go to the ER with a migraine last Saturday. I've been trying to rest and work.

The good parts were ok, but the bad parts were really bad. It's awful being in the hospital but it's even worse having a spouse in the hospital. We got a two-fer of that this year.

My goals for 2014 were to finish the 2nd draft of my novel, to finish Couch to 5K and to finish Emily's stocking. I only got the stocking done.

While I plan on writing more once my memory issues are better, as well as exercising, I only have one goal for 2015. That is to not go to the hospital. No more hospital, no more new and exciting illnesses. I have enough.

Who knows if I can keep that but that's my goal.

But here's looking forward to 2015! Hopefully I can also get my flying car and hoverboard!

A Thank You To Those Working Tomorrow

Image: www.seroundtable.com 

Happy Holidays! Whatever holiday you celebrate, if any!

Tomorrow is Christmas Day and a lot of people have it off from work, even if they don't celebrate Christmas, lots of people have the day off. I'm lucky and I also have the day off though I had to work today and I'll be working on Friday.

But there are lots of people who have to work tomorrow. My company is open to provide tech support - from what I hear it will be a lot of asking for wireless information for new stuff.

Some restaurants / fast food joints will be open as well as gas stations for those traveling.

Hospital, police and fire departments don't close either. They will be there to help people in need, even saving lives. 

There are probably other places open, which means people do work. I'm thankful for those who do work. I'm especially thankful to those who volunteer at my company so I don't have work.

Have a Merry Christmas and Happy Holidays!

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.

Grief and Elsa

Image: disney.wikia.com

I'm having a lot of grief issues with this whole seizure thing. I grieve for my lost days, I grieve for the fact that I could have easily died, and I grieve for the inability to give Emily the best Christmas ever.

Yes, I know a lot of these, especially the last is silly and stupid. But I grieve all the same. I think part of this is that I'm Elsa.

Not with the cool freezing powers but 'conceal don't feel' is something that is very familiar to me. My parents Elsa-ised me without realizing it. My sister was a problem child, always getting into trouble. So I was encouraged to be the good child. It wasn't too much of  a stretch for me, but I tended to take it too far sometimes. I would push my feeling down and push my feelings down until I would get to a breaking point and just explode. Just like Elsa, but again, less cool.

This caused me a lot of problems with relationships. My first serious relationship was full of fighting in part because I sucked at fighting. Luckily I learned how to fight better which has helped with things with me and Todd. That's why we've been married for 8 years.

But I'm experiencing the 'conceal don't feel' again with all the grief I'm feeling. I know logically that I shouldn't be as upset as I am, but I am. I keep crying and feeling sad. I know that I need to let the grief run it's course but my Elsa-ness doesn't want to let me.

So dear friends, I may be a little up and down for a little while. Todd and I have a plan to work on changing my lifestyle but it's going to take a while. Even he realizes that he's an odd duck the way he make a 360 change to his lifestyle after he got his MS diagnosis.

I just need some gentle handling in the next week or so. I promise not to wallow too long.  Christmas is going to be rough this year and even though I'll want to 'conceal don't feel' through the holidays I'll try to feel in a normal sort of way.

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.

Chronic Pain and Drug Use

Image: rockbox122.wordpress.com

I've talked about my chronic pain issues in the past. I can't take any preventive for my migraines - and I've tried just about everything. When my pain gets bad, all I can do is rest and rest and pray for the pain levels to go down.

I'm on several chronic pain and migraine support groups on Facebook, though I don't quite fit in. But I'm horrified to read the stories of people being denied treatment at the ER, from their doctors - all because the health care professionals are afraid that chronic pain patients are actually drug addicts.

A few weeks ago, I spent a week in really bad pain. None of my normal ways of coping was making this level 8 to 9 migraine go down at all. Finally I decided that I had suffered enough and we went to the ER.

I waited for three hours to be taken back, and when I was taken back there wasn't an open room. I was asked if I minded if I was just on a bed in the hallway. I didn't care, I just wanted to be treated. I got settled into bed, and I wasn't there very long when they wheeled another guy in and stuck him right by me.

He had called the ambulance because he also had a migraine. He got back around the time I did, but I got treated faster. I was given Dilaudid, which is a narcotic. That was exactly what the other guy wanted, and he started complaining bitterly that he was waiting to be treated.

The nurse brought him basically aspirin and saline. He demanded narcotics, and the nurse told him that his pain management doctor wouldn't allow him to have more narcotics and that he had been treated with Dilaudid two days before. He continued to complain about his pain, and the doctor came out and explained the same thing. When he realized that they wouldn't treat him the way he wanted, he took out his IV and left.

I felt bad for him, but Todd thought he was an addict. I do know that taking Dilaudid too much can lead to rebound migraines which are generally worse than the first migraine. that happened to me when my chronic pain first started.

Pain is awful and not being in pain can be addicting. I'd give just about anything to have the constant, daily pain go away for even a while. I'll never know what that guy's story was, but I hope he got some relief at some point.

Todd and MS

Last month my husband was complaining about double vision in his left eye. He didn’t think much of it because it wasn’t painful, just annoying. I kept bugging him to go to the doctor’s and finally after trying to work a 12 hour shift with it he went to urgent care.

Urgent care couldn’t find anything wrong so they sent him to the hospital. The ER ran a bunch of tests and found lesions which are a sign of MS. He was admitted to the hospital and stayed there for four days. It was some of the longest four days of my life, in part because of worry over Todd and worry over Emily who had the flu. I also got the flu, but luckily for both of us it was short lived.

Todd was released from the hospital after four days with a diagnosis of MS and type two diabetes. The diabetes isn’t too bad and it’s something that he should be able to control with diet changes. The MS isn’t bothering him at the moment but we know it’s something that will get worse as he ages.

The next week Todd spent trying to get a detailed doctor’s note so he could go back to work. Originally he didn’t have an appointment until March but finally they were able to squeeze him in allowing him to go back to work.

So far he’s been feeling okay. I’ve been sick with worry and have been feeling worse than normal with my own chronic issues. We are slowly getting back to normal but making some changes to be healthier. We have changed our diet as a family. Todd’s dropped a lot of weight already and I’ve lost a few pounds too.

All in all, it could be worse but it’s quite a shock. Now we have two people with chronic health conditions but I’m sure we’ll manage. Hopefully the rest of the year won’t be as bad as January was.