Another post written as I was waiting for healing to manifest (circa January 2006)

Someone anonymously posted the following to this blog, somewhere or another (I get the comments by email, and haven’t figured out how to tie the comments to old blog posts. Ahh well). I thought this deserved a reply so I’m sticking this out here.

I would feel a bit more sorry for you if it didn’t seem like you wanted pity. After all it seems like you get around pretty
well. You DRIVE! You definelty NEED legs for that! You travel all over, you get out of bed in the middle of the night to clean up after your wild cats. You have two children! But yet you say “I’ve lost my legs – literally, “there’s not many
places I can go without my wheelchair these days.”There are more people worse off and do amazing things! Quit feeling sorry for yourself. Get some strenth and fight it.

I’m going to assume that you’ve no idea what it’s like to live with a chronic health condition.

Some days I think it would be easier to be in a horrible accident and end up paralyzed, or to have my legs lopped off… something like that. Something that, when it was done, it was done and my family and I could learn to live with it. Oh and by the way, people without legs drive, travel all over, have children, and get up in the middle of the night to take care of their cats (not sure why you thought they couldn’t :::boggles:::)

With what I have, though, I live a life of “damned if I do, damned if I don’t” – when I get up and move around I end up in incredible amounts of pain. When I don’t get up and move … you guessed it … I end up in incredible amounts of pain. If I end up moving too quickly – such as to prevent a fall, or because I’ve heard a calamity (like the night of the cats) – I will pay for it for days afterwards. But if I do fall down I risk dislocations and broken bones.

It takes a significant amount of dilaudid (morphine) to get me through the day. I deal with skin breakdown. I’m probably going to have to have my jaw replaced within a few years because it’s disintigrating.

My health is up and down – over the summer, I did lose the use of my legs. There were times I could not even make them go where I wanted; much less walk on them. I even used the wheelchair inside the house, where I don’t have very far to go. We prayed and prayed and prayed and PRAYED … and back in November I had a breakthrough. One day I felt like I could make it a little ways without the chair. The next day, a little farther. I’ve been going “a little farther” ever since. I still depend on a motorized cart for shopping, and if I had to go very far – I would have to use the chair. No doubt. But for day to day… I’m out of it and there’s no doubt that it’s the Lord’s doing. The doctors are amazed. My pain level hasn’t changed much, but I am stronger.

Do I feel sorry for myself? No, I don’t. This is what I must go through for now. God has promised me that He will heal me and one day I will dance. I don’t know when that promise will manifest… if it will happen here on earth or when I get to heaven… but I am content knowing that it’s His business, not mine.

Should I get some strength and fight it? That’s such a complex question. It’s not my fight to fight. I have tried “fighting this” before and have ended up sicker than if I simply take good care of myself and let God be God, and me be me.

Why do I talk about its so much? Because so many people have no idea what daily life with a chronic illness is like. They don’t understand why their friend has to cancel dinner, or why so-and-so down the street is so exhausted all the time, or why Susie at church is always seeing a doctor. I also write because I’d like for more doctors (and medical students and dentists and phlebotomists and nurses and etc.) to become aware of Ehlers-Danlos Syndrome and its implications. So many doctors have never even heard of EDS, and those who have only know of the most dangerous type. It’s been a lifelong challenge to get adequate medical care, and the only reason that we can now is because we live in close proximity to a major teaching hospital. Even still, because so little research has been done, there is very little our doctors can do for us. Morphine. Joint protection. Fusions. Bracing. Skin and blood vessel protection. Yearly heart and eye checks. Dental care. That’s not much. Someday – there will be more. But only if patients like myself speak out to let the doctors know what life is like inside this body.

Does that help you to understand… even a little?