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?