Before I became ill I had big plans. For a long time after my health declined I mourned those plans and was consumed by hopelessness. Now I realise that my old dreams were small and I am capable of much much more. The world is full of possibilities. The only difference is I have to step outside of the box and give myself permission to embrace those less familiar paths. A while back I made a conscious decision to change how I view my world. To not beat myself up when I get discouraged, because that's part of the ride, and you can't move forward by denying those moments. And to know that I wont get stuck there again because I made it out before. The world can be beautiful. The pain, the fear, the uncertainty, the slow break down of my body all serve to make the good moments shine even brighter. I just have to remember to appreciate that.After I read that, especially after the crappy day dealing with doctors offices and politics and what not, I just sat at my computer and cried. Because for the past 2 weeks (summer is always harder for me) I realized that I have been doing nothing but mourning my plans. When I got sick, I mean when I realized I wasn't going to get better, I decided that I would be positive about this whole thing. And I've tried. But sometimes it gets to you, but I was bound and determined to make this God's battle and to have Him on my side all the time and realize that anything was possible because He was gonna be with me the whole time and hold me in the palm of His hand. That was His plan. But for the past 2 weeks, for whatever reason, I have forgotten that and I have gone back to mourning the loss of my plans. I have forgotten the world is full of possibilities, there are less familiar paths, and the world is inherently beautiful. I have also forgotten that I am capable of much, much more. So for the next two weeks my focus will be to get my focus back, pass my class, and at the end of the next two weeks I will get to check a whole lot of items off my bucket list. Because I will not let my illness beat me in 16 days. I will get in my car, I will drive and pick up my best friend I haven't seen in 2 years and we will go to Maine. We will eat more seafood than humanly possible, we will dance the night away (yes dance), we will tour wineries, go on nature hikes,we will ride rides at the boardwalk, and we will watch whales jump out of the ocean. And I will, with the help of God, for one week forget that I am sick. How is that for planning?
Thursday, July 26, 2012
So of course 10 minutes ago I had an idea of what I was going to blog about and it was going to be profound and amazing, but of course one of my stupid symptoms of one of my stupid illnesses is that I have memory loss. Lots of memory loss. At this point I can't decide if the memory loss, the weight gain, the pain, the headaches, the heat intolerance, or the other random myriad of symptoms are worse. I'm thinking it's the memory loss, right now, for this second. I don't know if it's because I failed 2 easy midterms this week that I studied my butt off and knew all the answers to an hour before the test, or if it's because I spent an hour with an older couple today and one of them has Alzheimer's and wondering if my baby piddly memory loss will ever get to that point. Maybe it's because I used to pride myself on my memory, you could count on me to remember anything and everything. If I dialed a phone number once it was locked in forever...now I don't even know my own home phone number. Now I don't know where my keys are unless I put them where they belong. Today I had to call my mom who is in LA to tell me how to get to Verizon because I drove by it three times and couldn't find it. Yeah. True story. So today the symptom that is the most annoying and whatever is memory loss. Most of the time it is weight gain or pain. I mean in September of last year I was almost dead I was so malnourished and weighed 99 pounds. Today I've been steadily gaining 1-2 pounds a day for the past 3 or 4 months and I know weigh over 200 pounds. We tried everything to get me to gain weight and now I can't stop. That is really annoying. Now I have to lose about 50 pounds to be where I'm supposed to be. How ironic. The pain has become such a constant that I don't even pay attention to it anymore. It's just like breathing to me now. Just worse. The passing out or almost passing out (pre-syncope as the doctors call it) is just rather annoying. Your like fine one second, the next you are lying flat on the cold floor so you don't pass out. Or you are fine one moment and then you have to sit down so you don't pass out. Or, my personal favorite, you are fine one moment then you wake up anywhere from 5 minutes to 2.5 hours later having no idea what just happened and hope you don't have a head injury from the actual passing out. These are all the negative things though. Well, not all of them. I don't want to overwhelm you to much. Now, let me let you in on a not so secret, secret. I'm a type A personality. Shocker, right? I've had my whole life planned out since I was about 4. And it was going right on don that path perfectly. Found a guy I loved and wanted to marry in high school (but also found out in high school that he wasn't the guy for me, though I'm sure he is wonderful for his now wife),graduated from college with .02 points away from honors (haha), always knew I wanted to be a teacher, became a teacher, was independent, found friends, found a church, found myself, got sick and almost died and was told there isn't a cure. Oh wait, that last one wasn't in there, was it? It seems all of us type A personalities get these wonderful things thrown at us that we have absolutely no control over, in my opinion for God to see if we can put our trust in Him and pass control over to Him. I've learned in all of this that I am super bad at that, like way bad. Like the worst at it ever. Ironically, most of my friends frequently complement me on my ability to take it all in stride, laugh it off, go with the flow, etc. However; they don't realize the constant dialogue that is going on in my head that goes a little something like this, "ok God, it's a new day, I could be cured today, ya know if that would be cool with you". Or the little things I tell myself like I learned in class the other day that all the red blood cells in your body are replaced every 120 days and the lining of your digestive system is replaced every 3-5 days so if I eat perfectly and force myself to exercise for the next 3 months then I will be a whole new person and that means the disease won't be in my body anymore. But then I also remember the thing that our physiology professor tells us every day...nothing in biology is 100%. I've told him a little of my story (after I passed out in class, check that off the bucket list) and he said dang you got the full cocktail didn't you. And I just chuckle and say oh it's not so bad, when I'm really like in my head yeah and it sucks big time. There is no cure for autonomic dysfunction. There is stuff they can do to make you more comfortable, but there is no cure. There is no cure for colitis or fibromyalgia either. There is a cure for celiac disease being a gluten free diet, but that is probably the least of my problems at this point. So all that being said, I don't think I will be making big, huge, elaborate plans I can stick to any time soon. But I won't stop trying. I am in several online support groups and follow some of their blogs. The best, funniest, most truthful one I've found is this one: www.bobisdysautonomia.com and she also has a Facebook page. Well, today on her Facebook page she posted this status