Spots and Polka Dots

Ug. So I finally got rid of this headache I've had since October 15. How do I know it was since October 15? Because that is when I got the flu shot my doctor kept harping at me to get. For four days after that, I had the worst headache and chest pain I've ever had. The next day all is well, until the afternoon when I get the headache back. And so it went every day until this past Wednesday. Then it was so bad I had to go to the doctor. Sinus infection. Second worst headache I've ever had in my life. Doc gave me pain pills and a stong antibiotic. Friday I was in bed all day...Doug had to come home from work at 8 in the morning. I am NEVER in bed all day.

So Saturday my headache is coming and going a little, I finally have some energy to clean up, and I notice little splotches in a circle around my elbows of all things, and down one arm. It's not hives, because it's not very itchy. It does feel almost like a bruise when you touch it. Lovely.

So today, Monday, I went back in to the doctor to find out what was up. I'm thinking shingles, lupus (too much internet...I DID have all the symptoms for lupus except the butterfly rash...just goes to show you can't jump to conclusions!!) So he looks at me and says, "This isn't a typical reaction to antibiotics." I say, "I'm not your typical girl!" So he checks me all out and concludes that this is a serum reaction (serum in something in your blood) similar to vasculitis. I'm like, um HUH? And I'm pretty fluent in medical-ese since I am a professional medical patient!

Then he said it was an immunological response to the antibiotic. That I got. If I didn't have MG, I probably wouldn't have had the reaction. So because the antibiotic will be in my system for at least another 4 days, it might get worse before it gets better; or at least "linger." Nice.

Anywho...on another note....two "firsts" for Jacob tonight, within about 2 minutes of each other. After his bath we were getting our jammies on, and Doug sneezed in the bathroom. Jacob yells, "Bless you Daddy!" Never said that before...it was precious.

Then as he was launching himself off the changing table at me to give me a "big hug" he ripped my trach out. Not so precious.

I knew it would happen eventually. I had just taken it out and cleaned it, and thankfully I caught it so I didn't have to clean it all over again. Just popped it back in....well, mostly : )

Oh the joys of life!!

P.S. I will NEVER get another flu shot as long as I live!!

MG, the Snowflake Disease

Hey everyone.

They call MG the snowflake disease, because while snowflakes all have many things in common, each one is distinctively unique. (They should call in the pain-in-the-rump-one-minute-you're-fine-the-next-you're-on-the-floor-because -your-legs-gave-out disease, but I guess that would take too long.)

Anywho. There are many, many things that myasthenics CAN'T take: like magnesium. Almost across the board, it makes all the MG symptoms worse. There are also many, many things that SOME myasthenics have no problem with, while others may go into crisis. For example, most people with MG cannot take the antibiotic Cipro. I, on the other hand, can take it with no problem. MOST myasthenics love Levaquin, a fairly new antibiotic. I took it for three days and almost ended up in the hospital. Doug had to half carry me down the hall, and push me up into my hospital bed (this was when the hospital bed was next to our bed in the bedroom. We could then fall asleep holding hands, even though we couldn't sleep in the same bed yet. : )

One of these questionable things is the flu shot. My very first GOOD neurologist (yes, I must distiguish because I had several that were HORRIBLE before him, but that's another post) told me to never get a flu shot. I should have left well enough alone. EVERYONE kept asking me about the darn flu shot so I thought I'd ask my current neurologist. He is fantastic, knowledgable, and the head of the neuromuscular clinic at the University of Michigan. Although I am partial to my first good neurologist, Dr. Moretti, Dr. Teener comes in a very close second. So I ask, and he says the benefits are sure to outweigh the consequences....I would do it if I were you.

Let's just say he's slipped a little on my "Favorite Doc" list.

I have spent the last 4 days feeling like I was in a vise grip. My whole body. Not just pain, but pressure. The joints in my pinkie toe hurt. I didn't even know I HAD joints in the crooked little booger. If I took a deep breath, I felt like an elephant was sitting on my chest and my lungs were full of razor blades. I had a slight fever. I had a headache that was ALMOST a migraine. I was SO weak. Scary weak. The only thing I really wanted to eat was popsicles. (God bless my husband for taking Jacob to the store, on his own, while I slept.) I took 2 naps a day. For those of you know know me well, I can't sleep during the day. I have to pee every 10 seconds. I didn't get all snotty and sneezy, but I was achy and coughy, and of course, razor-bladey. (Dopey and Grumpy probably applied too!)

It's now Sunday, 5PM, and I only had to take one nap today! Wait...what is that? I hear soft strains of the Hallelujah chorus!! Most of my aches are gone, now I just have to not over-do it.

Anywho. Next time someone asks me if I want a flu shot, I hope they are wearing protective gear.