Incurables Program, Day 3A

Dear ones-
Warning: this is graphic. Please don't read it if you're sensitive.

I got discouraged. I was drinking a fruit/SF/cayenne blend and I gagged. I couldn't finish the last ounce. I had to go out to my backyard and walk around a bit, then I hugged the puppy we are pet-sitting for a couple of minutes.

Do you know what doctors do to diagnose muscular dystrophy? You report the weakness, and your PCP gives you a thorough neurological exam. He says, "You've got something, but I didn't do that well on that portion of my boards, so I'm going to refer you to a specialist." You see the neurologist. He does the same exam, then gives you an EMG. An EMG is a voltmeter on a rolling cart with a lot of wires hanging out of it. At the end of the wires are needles. Starting at your big toes, they stick the needle into every muscle in your body and give you a little electric shock. If your muscles don't respond right, the doctor ups the voltage until they do. There's a readout page on this thing that keeps record of how each muscle responds. This is so painful it makes you cry, which is embarrassing. There is no emotional support from anyone during this time. Just you and Dr. Frankenstein.

Then he orders a lot of blood work, and he orders a muscle biopsy and possibly a nerve biopsy. The lab tech says "they don't know what's wrong with you, do they?" You ask for a local anesthetic for the muscle biopsy and the anesthesist looks at you like you're a kook. He gives you a double shot of whatever in the IV and you're out. You wake up in another room with all sorts of people in scrubs just tying off the last suture. You have all kinds of wires and taped on patches under your patient gown- what did they do while you were asleep?

You think you'll recover in a couple of days from the surgery where they took a small hunk of thigh meat out of you and shipped it off somewhere. You've got seven children, a busy husband, and a house to care for, and you have to have assistance getting from the couch to the bathroom. The pain killers make you sick, but without it the pain is unbearable. You lie on the couch for a week and read books to your children. It feels like someone cracked a bat on your thigh. They also took some of the sciatic nerve out of your foot. After it heals, you discover it's numb but has burning pain at the same time. Your doctor tells you your nerves are healthy, but you'll live with the numbness and pain for the rest of your life.

The lab report comes back with a myopathy, but the specialist can't figure out what you have. He tells you it looks like MD, maybe two or three kinds, and refers you to the top guns in the field. You wait a year to see these guys, not knowing what you have or if you need to plan your funeral. Think of how my husband felt!

Four international specialists do an initial on you. They disagree on what you have. Guess what you get- another EMG, but this time, thankfully, just on specific muscle groups. I made my husband come in. He was so grossed out. They order more blood work and a DNA test. The lab tech says he's never seen a call for some of this stuff. They're looking for any possibility. You are sent home with a packet from MDA- welcome to Jerry's world. I still don't know what I have, so why am I holding these brochures?

Two weeks later you go back. Only one doctor this time. He does the same stuff. I get yet another EMG, but fewer muscles. The needle is much longer. The tech has a rough touch. He never speaks, and only looks at the computer screen. You're ready to scream in pain. You cry instead. After this, two doctors confer. You're done, and you're sent to the receptionist with your chart. You still don't know what you have. You only know they think it's MD.

You watch the last few minutes of the telethon and cry. There's no cure. There's nothing anyone can do. Those children went through the same thing I did and more. Those children can't use their muscles. Some of them won't make it to age 20. Some of those ALS people won't make it to the next telethon. I don't want to see any more of those babies have to go through this.

Well, on IP day three, you might have an emotional release. Go with it, if you do. Get it out.

Thank you for allowing me to share with you. I hope I didn't upset you. I'm fine- grounded again.

Love and blessings,
dp9 (Donna) Tweet