Ever feel like your nerve endings are all on fire? You know? Like when you're out in the cold for a prolonged period of time and then enter a toasty room? That sting... That fire... That numb type pain... That's ONE of the many things I live with day in and day out. All over my body. Even my face and scalp. Sometimes it gets a little itchy feeling too.
My sons , A and M, have Tourette Syndrome type symptoms. It doesn't seem to bother M too much at this juncture, but A is fully frustrated. I am frustrated. It tears my heart out to see my son suffer with something he has very little control over! It is with him every minute of every day and he gets so tired of fighting it. If you don't know anything about Tourette Syndrome or OCD, you can't understand. Imagine having an itch in a bad spot while you're on stage in front of whoever. You're there for all to see and you can't scratch that itch. You can suppress the urge for a while, but you know that eventually you are going to have to scratch it. Not just rub it or pinch it or scratch it through your clothes. You have to make contact - nails to skin, or it won't be satisfied. That's what it's like. Your brain is telling you to twitch or jerk or roll your eyes or whatever. Then, the OCD part says you have to do it exactly the way your brain says to do it or you have to keep trying until you get it right. Because you're smarter than your brain signals, you can suppress the urges for a while but eventually you have to obey. You have to scratch that itch. That's the hell my son lives with every minute of every day thanks to these microscopic bugs that are hard boogers to kill! BTW - You can read about Bartonella here. Keep in mind, they are still investigating. They don't know all there is to know about the parasite yet. Like many don't realize it can cross the placenta and infect a baby.
Anyway. So, I'm on two broad spectrum antibiotics because I can't get the one I need. I'm having re-occurring yeast issues and now have to go on medication for that. I go in three weeks to have my liver function tested. I still deal with Fibromyalgia. Imagine you just climbed a mountain of stairs and your legs are tight, sore, exhausted, weak, now straining with every step. I feel that all over just sitting in this chair. I can't walk across the room without that straining soreness in every step. I can't hold a book without feeling it in my arms. I can't type without feeling it in my hands.
I now deal with joint pain, as well. Respiratory issues come and go all year long. I have no idea what it's like to take a single step without my feet hurting. The only time I'm without pain is when I'm in a dead sleep. Thank the Lord I do sleep! A lot of Lymies don't sleep well.
C still has Fibromyalgia type soreness - mainly he stays sore longer than healthy people after he works out. But. The martial arts seem to give him that low impact muscle building that gymnastics did when he was young. So I'm thankful for that. He still gets fatigued faster than healthy teenage boys and he still gets his chronic throat infections when he's over-done. He deals with allergies in our new environment that he didn't have back home, so I have to watch that closely every Spring and Fall, now.
A, as I said, suffers with the Tourette Syndrome. He also has fibromyalgia type pain and now his joints are beginning to hurt. His asthma and eyesight are getting worse. It's not fun.
M has developed Tourette Syndrome tics over the last few years and is now pronounced enough the doc put him back on treatment. He has asthma and allergies, and nerve spikes in his chest now and then that scare him.
G is not yet being treated, but I need to get him on some over the counter stuff I have. It's just so hard remembering everything for everybody with my brain turning more to mush with each passing week. I used to remember everything and now get things confused, backward, or just completely forget. It's very frustrating. G has chronic headaches, chronic fatigue, and poor appetite most of the time.
Born with congenital Lyme (meaning they got it from me in the womb), my boys have never known a moment of life apart from Lyme disease. From the moment they were conceived, the microbial monsters have invaded their bodies. I wonder if they will ever be totally healthy or if the microbials have scarred their bodies forever... become in a sense a part of their DNA.
I would not wish this illness on anyone. Yet, God uses it to mold us and shape us into what he wants us to be. I know my three big boys have a relationship with God that is quite unusual for most teenage boys. When you have so little control over things, self-reliance gets stripped away. When you're constantly fighting to survive, you become strong in ways you wish you never had to learn to be, but you're stronger nevertheless.
Can you tell I'm tired today? I still deal with the pancreatitis. Addison's can kill me if I forget to take my hydro-cortisone enough times. It's getting to a point where I can feel pain in nearly all my internal organs. I had a bad time of it with kidney stones this past spring. I'm sure I haven't passed them all and I do feel pain in my kidneys. The headaches are just weird. Migraines... Tension... Both... Then there are the moments when my brain feels warmer than its supposed to be. Yeah. Not fun! I'm glad God knows all about it even if the doctors don't!
I think I've rambled on long enough. Its not as systematic as I usually write, but I just kind of needed to vent today. I hope you don't mind. I must say if you made it all the way to the end of this post, you must either suffer like I do, love someone who suffers the same, you're OCD and have to finish what you start, you're highly curious and must know all, or you really love me and mine. Because nobody likes to read about painful things. Not unless there's a guarantee of a happy ending. Whatever the reason, thanks for keeping up with us, but thank you more for you love, support, interest and prayers! God bless you!
No comments:
Post a Comment