Huzzah!

Forgive my geekish words. I am just glad to finally have some semblance of a plan in place finally. Granted, a lot of these plans are things I had to come up with myself, but I can't pretend I didn't have some help. I finally got through to Dr. Green. There is still a long way to go, but at least the most immediate issues, sleep and seizures are on their way to getting addressed. The thing with having Mito is that is causes numerous health issues. To simply tell a doctor which symptom is most troubling is nearly impossible. In fact, to tell you the truth, they all bite, quite plainly. To prioritize things goes something like this: "OK do I want to have no seizures but still be in pain all of the time for a while? Do I want to continue to be nauseous constantly? Is it OK for me to fall from time to time without looking into it?" There are certainly quite a few other issues at hand, but this is kind of my screwed up thought process. It helps to be a bit cracked to live my life. ;)

Forget the fact that it practically took an act of God to get into Dr. Green in the first place. I'm so tired of the dang receptionists telling me "well you're going to have to wait until February to see him....blah blah blah," all the while completely ignoring the fact that I'd had seizures and the ER doctor told me to see my primary doctor not just some Joe-blow doctor. No offense, but my doctor pretty much kicks butt. I am sure there are many other great doctors out there, but Dr. Green is one of the only doctors I will trust when it comes to my day-to-day care. There are several reasons why. First of all, he's one of the few doctors I've encountered that hasn't treated me like a complete headcase. And after all I've been through, all of the pain, agony, uncertainty, I simply don't want to go through the dark days of not being able to get out of bed and not seeing a way out of the hell that was my life. Don't get me wrong, I spend plenty of time in bed. In fact, if I'm not working and I'm at home, 9 times out of 10 that's where you'll find me. My body just doesn't have the get-up-and-go to get out of bed very often anymore. I count my blessings and realize the blessing it is to just be able to get out of bed. I can't ask for much more right now. I find joy in the smallest, simplest things. A blessing of this life. 

I suppose I should get to my original point. Dr. Green and I discussed what has been occurring. He did say that this looked to be a progression from how things were previously. That much can not be doubted. The seizures I've had lately have been more tonic-clonic as opposed to having the tonic-clonics every once in a while and more myoclonic or absence seizures. It also takes me much longer to recover from them than it used to. Returning to my baseline usually takes at least a week. I don't do the typical postictal thing where I fall asleep right after and don't wake up for several hours. Instead, I am very tired and weak, speech doesn't return for about a half hour as does my ability to move myself. I will be tired for several days after a seizure, and it usually takes much more energy and effort to do anything. Showering, getting up to the bathroom, eating, it all just takes more effort. That's why I generally am in bed a lot of the time. Pushing myself harder than I need to may lead to another seizure or an energy crisis. Neither of which are ideal situations and could lead to further decline. 

We talked for a long time about the options. Taking me off of the Lamictal and switching to something else.  The Lamictal was changed to 50 mg from the previous dose of 25 mg after my last seizure and the finding that my level was so low. Dr. Green favored the approach of dual therapy. So, then came the question of which medication to add. Several were thrown out there, Dilantin, Depakote, Tegretol, Topomax, Neurontin, Lyrica, and Keppra were among those discussed. I flat out told him that I will not go on Depakote unless there are no other options. Mito patients tend to have higher levels of Valproic acid (the active ingredient in Depakote) in their blood as a general rule. Too much Valproic acid leads to liver failure. I kind of like having a somewhat decently functioning liver. I'd rather not die of liver failure if I can help it. So, needless to say we moved on. :) The final conclusion that he was leaning toward adding Keppra and leaving the Lamictal where it was for now. He even said that if I were his daughter, he would be seeking another medication to control these seizures. That was pretty cool. It means that he's thinking seriously about how to help me. At any rate, he wanted to consult with Dr. Pao, my neurologist in Mankato to see what her recommendations were. We both favored this approach rather than screwing around and possibly making things worse. We also discussed that the Lexapro I've been using to help with my mood could also be contributing to the lowering of my seizure threshold. However, we decided too many medication changes at once are a bad idea and we should see how things go with the current plan. So, we decided he would consult with Dr. Pao and let me know what the plan was after that. We also decided to increase my Ativan dose to 0.5-1 mg instead of 0.25-0.5 mg. The intent is that I may actually get some sleep! When I went to get my medications yesterday afternoon before I went to work, Dr. Green had called in both the Keppra and the Ativan. So there was my answer. 

I see Dr. Pao on February 21st. I would like to schedule a follow-up with Dr. Green at some point in the near future. I want to make sure he is kept up-to-date on things and that he and I are able to collaborate on things that should help me maintain a decent and somewhat acceptable baseline. At least for now.

I made the independent decision to reinstate my Co-enzyme Q10 and Selenium supplementation as well as adding Biotin. Biotin should hopefully help my hair get stronger. I have lost a lot of hair in the past year or so, and my gut feeling is that it is caused by lack of nutrition. Seems to be the culprit anyway. Co-enzyme Q10 is a primary Mitochondrial supplement, and Selenium is something I've been shown to have a deficiency in in the past. So, this should help slightly with the energy production in my cells. 

I have also made the independent decision to start Boost for extra calories and nutrition. Previously, I had been using Ensure clear, but I simply don't feel it fills the nutrition gaps I need filled and Ensure doesn't taste that great. Boost tastes slightly better and seems to have more to offer nutrient-wise. Today was my first day with it, as I had to finish my supply of Ensure clear first. We will see how well these changes agree with me. I've also reclaimed my best buddy, my Camelbak waterbottle, to make sure I'm keep adequately hydrated. All of these things are good. 

Continuing to live with hope and joy in my heart. I won't lie that there are some very difficult days, past, present, and future. But I choose to face those days head-on and look forward to the wonderful days. There is always something wonderful or beautiful to focus on, even on our worst days.

I hope to resume going to Mass very soon and going back to the gym to start some light exercise. I can't overdo it, but it's something I need to do and right now it's FAR too cold here in the frozen tundra for me to be walking outside, which is what I prefer. So for now, the good ol' Cutting Edge will have to suffice. 

There are many, many changes coming up in my life. I will be graduating in the spring with my associate degree in nursing. This will start and exciting new chapter in my life. I plan on moving after graduating and attempting to live independently. Hopefully that all works out for me. I am still relying on God to lead me in what is best for me. I have a sense that God is calling me elsewhere to live, at least. Time will tell and things will become clearer with time. For now, I focus on the joys of these moments and rely on my God to sustain me throughout my trials and this last semester of school.

More things to come on the Energy for Life Walkathon also. Exciting times ahead!

PS: Here is my Awareness Video. I recently put it all together.