Today I had a seizure. That's three in a month in a half. From what I've gathered, this was a more violent, convulsive seizure but only lasted about 30 seconds. I felt awful afterwards, though I highly doubt anyone who gets done seizing wants to run a marathon. A person's brain and body can only handle so much, ya know? I only know of one person who actually follows my blog (thanks, by the way!) and she is far too familiar with seizures for me to even go into explaining them. For those of you "rookies" who may lurk around, seizures are actually shown to be caused by an overload of electricity in the brain. The overload can occur in one lobe of the brain, one hemisphere of the brain, or the whole brain. The area of the seizure on the brain dictates what happens during the seizure, as well as many other factors. From what I have gathered today, I had a 30 second generalized tonic-clonic seizure, or something remotely similar. It's difficult to know because I have not had a seizure caught on an EEG and therefore can't tell you where my seizures are occurring in my brain.
But the big problem is, these seizures are getting more intense and closer together. Before July 5, my last seizure hadn't been for just over a year. My gut feeling is that Mitochondrial disease progression is what is causing an increase in my seizures. Not only that, but there are several other issues that seem to be related as well. I've been a lot more clumsy lately, definitely not as steady on my feet as I should be, I've been dropping things and spilling things more lately. Last night, when attempting to get into the bathtub, I slipped but thankfull did not fall. I also came close to falling up the stairs of my apartment but was able to stop myself. And, thank God I was.
Again before the seizure itself, I felt "off" an a part of me knew a seizure was imminent, but it's difficult for me to know how much time I have before a seizure will actually start. Not only that, but I've learned that my seizures are very similar to my migraines, which is more confusing. Seizures and migraines are actually very similar and there are many people with Mitochondrial disease who have both migraines and seizures. Fortunately for me, anti-convulsants are also somewhat effective in treating migraines and preventing them. It's something I picked up not only from listening to a teleconference on Mitoaction but also from a doctor during one of my many recent ER visits. Coincidentally, this particular visit was for the "aura" I was experiencing because I was not sure if I was going to have a seizure or what, and it did end up being a migraine.
I was also dehydrated during that particular ER visit, which is partially due to my lack of willingness to eat large amounts. I know that I am not eating enough to nourish my body, but it is a difficult issue. My lack of eating is caused by my disease process (or at least that is what I have hypothesized), and has become a more life threatening issue lately. I've come to realize it's likely I'm dehydrated and malnourished almost all of the time. As I have said before, it's due to the fact that I am rarely feeling hungry and my body's rejection to food in general. The reason my body rejects food is likely due to digestive dysmotility. It basically means my digestive system has stopped working sufficiently to allow my body to digest food.
With Mito, a ton of issues tend to come up. That's probably because more often than not, medical professionals are told to think Mitochondrial disease if three or more organ systems are involved. I've put many of the pieces of the puzzle together on my own, but I'm not sure they all fit together, as I'm not a physician. I'm trying my best to "hang in there" until I see Dr. R on September 7th. Tomorrow I have a ton of things to figure out.
I have to figure out what human services can do to help me until I have Minnesota Care again where medical bills are concerned. I have to call the neurology office in Mankato to see if I can get an appointment sooner. My hope and prayer is that it will all work out and I will be able to have Mama Mary come with me so we can figure this out once and for all. It would be ideal if Thursday would work because Mama Mary has that day off and my workplace would likely be willing to give me the day off so I can get these problems figured out.
Beyond tomorrow, there are hundreds of other unanswered questions. I also need to move back in with my grandparents as soon as possible because I have realized it is no longer safe for me to live on my own. That reality is tough to swallow, but for now I have to accept it the best I can and deal with it. Once I get insurance coverage, I also know that I need to get into counseling. I'm not willing to get treated for depression, but I am depressed as a result of my apparent disease progression, lack of answers, and other issues that have laid dormant within my mind for years. I've been trying to be strong for far too long. A great deal of my issues come from my upbringing as well as the very real losses I experienced only less than a year ago. There is just a lot I have to work through, and I can't do it on my own. I know that now. The thing is, I can't worried about the other hundreds of unanswered questions out there. I have to take each day and that day's issues, one at a time.
I know there are a lot of prayers being said on my behalf. I can't express to people how grateful I am. The biggest thing I'm struggling with is people. Don't tell me you understand me. Don't tell me everything's going to be OK. I have realized that whether or not things are "going to be OK" is irrelevant. What means more to me is for this moment, I am loved, I am as comfortable as possible, and I enjoyed today. My adopted family and my supportive family members mean more to me than I can say. My friends and supporters mean more to me than I can say.
Here's hoping and praying I can get some things accomplished tomorrow. I can't tell you what all of the preferred outcomes are, all I can say is I will accept whatever God decides, and whatever happens. I will not stop advocating for myself and pushing for answers. I will keep fighting.
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