Today is the surgery to amputate. I didn’t push the issue when I got back, I put it off as long as I possibly could. The gangrene was progressing, but slowly. We did more testing on the area to see if there was any useful data to gather or rule out certain root causes. But mainly for me, I needed to try to recover as much strength as I could first. This surgery and recovery will take a lot more energy than my body has available, causing my baseline to go down further. I simply cannot afford for that to happen, especially since I’m already much weaker – too weak.
Pictures of my feet, ankles and legs can be found HERE. I have them hidden since, while not at all grotesque, it’s not exactly pretty. I am sharing for those who may have similar issues or are otherwise morbidly curious.
I still have not nearly recovered from the FDA, my baseline is still much lower than before I left. That means my daily best is much worse than it was, and so is my daily worst. My entire body is heavier and I am still much weaker, slower with less charge in my batteries. I drain much faster now and recharge slower and a list of symptoms/issues are far more severe. I am in intense pain, layers of pain. I feel more easily lost or confused and I strain to read or see tv since my vision is more doubled as I tire further. Typing this is a struggle, and getting my words to make sense has taken 3 days so far. I have little stamina – I struggle more to get through a minimal activity, housebound day and small tasks like making my morning eggs are now much more difficult, if not impossible. In fact, I’ve only made my eggs once in the two weeks since I’ve returned from the FDA. By early to mid afternoon I am completely spent even though I have done nothing all day and the pain is unbearable. I am further removed from my family and from my life.
I absolutely knew this would happen, but I did it anyway. This outcome is nothing new to me, I go through this often after I spend too much energy. Sometimes worse than others. Clearly my energy was well spent though, it was worth it and I would make that same choice again without hesitation. But I’m in rough shape. The thing is, this really is a simple surgery that a normal body could handle just fine. But my condition/baseline is fragile on my best days and I get much worse for months from even a simple cold I catch. Anything that causes my body to use more energy can have unreasonable consequences. This surgery and recovery will cause my condition to deteriorate much further and I will suffer brutal difficulties and pain that are on top of and unrelated to the surgery. I assure you that what I experience on my best days goes far beyond a healthy persons worst nightmare. So… this is going to suck. No doubt. But this is just what happens when the body’s cellular energy factory is broken. This is the beast that I fight. Every day.
I am an exotic species now. “Modern medicine” is still at it’s infancy in understanding mitochondrial issues, special techniques/care needed and the implications on the human body. In fact, today I have to bring the protocol for mitochondrial patients to the Anesthesiologist to ensure I am not permanently harmed – this is just not something they know about or know how to deal with. I no longer feel safe in a hospital or around Doctors. Especially as my energy drains and communication becomes even more difficult for me.
While I know that I am in good hands, and these Dr’s are the best in the area, I still fight the fear that something will go horribly wrong. A realistic fear for mitochondrial patients, and let’s be clear – Like most in my position, I haven’t had too many comforting experiences with Doctors since Doctors first poisoned me 7 years ago.
The gangrene only got one toe, so that’s great. But the Levaquin induced micro-vascular issues that caused the tissue to die in the first place also covers other toes and are all over my foot and legs and to a lesser extent my entire body, face included. So now I face the very real fear that I will lose more to amputation in the near future. After 7+ years of daily torture, I now fight to remind myself that I haven’t lost just yet. But somehow the thought of even a small amputation really makes me feel as if this is the beginning of the end. In my head and heart I know that’s not true, but it sure can feel like it if I let it.
One of the reporters I spoke with shared with me a story of her father who battled significant illness and lost a considerable amount of body mass, and how that was hard on him. Obviously I too understand that mental battle all too well. When I accidentally catch a glimpse of myself in the mirror now I see how much smaller I am. How much weaker and more fragile I am and that does really make it hard to keep my head up at times. It’s hard not to think I’ve already lost.
But I must remember that I have fought way too hard and survived through way too much to let something this simple get to me, I must remind myself of my strength. I must remind myself of all the inner fight I’ve routinely demonstrated and all I’ve overcome so far. I must not falter, I must not let my fight fade. I must remind myself that I am Superman to one beautiful little boy.
I must not fail my son.
I don’t know that I have a clear point today. I am not doing well and I am struggling to keep my head up at the moment. I will do just fine, I always come out with my head held high. I guess I just needed to get this out and mark yet another moment in my fight. Thank you for reading and I love you all.
Your Brother in Fight,