Ok, I'm back from the rant I had yesterday. I guess I could blame it on pre and post-seizure emotions.
I went on a bike ride today. Probably not as physical exercise, but rather a break from the four walls of our apartment. It was nice, a little muddy, but it helped clear my mind for a couple hours.
Some new developments. I'm now working solely with NW when it comes to my health. This is kind of nice because all of the doctors can talk to each other and use the same computer system, so when there's a diagnosis at this end, the doctors can see it on the other end.
As far as Epilepsy, I was put on a new-ish medication called Sabril. It was on the market for a while, then abruptly taken off because doctors saw that that it could potentially cause peripheral blindness. After a couple years, it's back on the market with a HUGE warning label, and system in place to be sure to catch any blindness that the medication may be occuring. I'm going to NW every three months for an extensive eye exam. To be honest, I could write a hole post on how nervous this medication makes me.
On the good news side of things, I started seeing a new psychiatrist. He's at NW, (my old one was closer to home). He's young, energetic, and full of ideas on how to help. I'm intrigued, but still guarded because, after all, it's still psychiatry... the place I go to dispel my darkest feelings.
On the day I met with the new psychiatrist, Sara was unable to drive me down in the morning, but she was going to be there to join me for the actual appointment. This meant that I was going to have a little adventure for the day!
I put on my best shoes, wore my best coat for the trip and carried all of the necessary documents I would need in my favorite bag, (yes, a man purse). I walked to the train, bought my ticket and waited. Once the train arrived, I enjoyed looking out the window at a vantage point similar to an average, everyday commuter. It was both comfortable and enlightening.
Once I arrived at the station, I hopped in a cab and said, "Northwestern hospital please!" in the most dominate voice I could muster. The cab weaved its way through traffic and dropped me off exactly where I needed to be. I texted Sara, "Here."
I made my way up to the cafeteria... everyone should know that I love their cafeteria. Just awesome. Once, I got my food, I ate and waited for Sara to drive in and meet me where I was sitting. It was then that I thought to myself what a great day I was having. I didn't know how the appointment was going to go, but right in that moment, I felt like I would on my way to work everyday, or driving to my parents house in Wisconsin. I felt free, independent, and strong.
Don't take even the littlest things in your life for granted. The things you loath the most in your life right now could be taken away, and you'll spend the rest of your life hoping for the opportunity to loath them once more.
Thursday, May 8, 2014
I'm back, sitting at my desk, literally wiping dust off the keyboard. I haven't written since January; right before I took my trip back to Mayo Clinic to see if they could provide us with any answers, advice, or pat on the back. Short answer: No.
I've written post after post about my experience with Mayo, but I'm choosing to skip over our last trip. Not because something happened that I'm withholding, but rather, the opposite. They offered us a path, and we took it. I knew that there was going to be some work to be done on my part.
In the fall of 2012, I was put into another EEG. The doctors boldly took me off of all of my medications, so they could get a good look at what my seizures looked like. I was admitted a week from Thanksgiving of that year, thinking that I would definitely be out by the time the holiday rolled around. I was wrong, and I spent the holiday in the the hospital having seizures. I remember the first one only because I looked up from the bed to see my Dad, with his coffee cup shaking in his hand. (I was told that there were nurses crying in the hallway after one seizure in particular. That will always stick with me).
I had seizure after seizure until my tongue was so bit up, bloodied, and swollen that it was hard to talk. Even weeks later, I was rubbing the same solution that you would drop on a toothache on my tongue because it hurt so bad to eat, drink, and talk... even sleep.
***Just had a seizure, taking a break***
Once given a proper diagnosis from Mayo, I was put on a steroid treatment in spring of 2013. A nurse would come to my house once a week and administer an IV steroid treatment. What I experienced was what I HAD to expect. The nurses, while nice, all took several sticks (2 to 5) to find a proper vein, and when they did, I bled all over my kitchen floor until they inserted the IV. So much blood everywhere, I remember.
The steroid treatment didn't work when it came to reducing the number and severity of my seizures, so the doctors decided that the next step would be IVIG. I can't quite explain what this is, but I would go to NW once a week and it worked similar to the steroid treatment. This started in the fall of 2013.
The nurses were better, in the they found veins more efficiently. I was told at Mayo in a very casual manner that there was a potential risk of me developing Meningitis as a side effect of the treatment. Guess what happened? I woke up one night after an IVIG treatment with a headache so severe that I thought there was no way that I could make it to NW. Sara did her best and got me down the ER at NW.
There I received a spinal tap (now my forth in five years) and not nearly enough drugs to ease the headache. The spinal fluid was tested and I was deemed a threat to the other patients and doctors, so I was put in isolation. I sat there until a proper isolated room was available upstairs in the Neurology department.
I was moved after hours waiting with Sara and my two sisters. They all really went to bat for me that day. I was put on antiviral, antibacterial, and some other "anti" medications for a couple days while in isolation before I was deemed non-infectious. Although the headache was still there, I was allowed to go home. The next week, I started back up with the IVIG treatments, with full knowledge of what they can do.
After still having seizures, nothing seemed to be helping and so the treatments were stopped early; just before Christmas. Then after the holidays we ventured back up the Mayo for more tests only to be told that they tried what they could, and it might be best to work with my doctors at home, especially with my therapist and psychiatrist, (I let them in on some of the darker side effects these medications seem to have.)
This is a lot to take in, and I know it's sounds a bit like self-lothing, but this is what I go through when I have my therapy sessions. I discuss all the gory details out-loud with the hope that I can make some semblance of what this all means. All of it.
What does it all mean?
Why is this happening?
What can I do to better my life and those lives around me?
What kind of quality of life is this?