Sunday, January 26, 2020

Bring a Hat

Time for the 24-hour EEG I talked about earlier. Wear a button-up shirt, make sure your hair is clean, and bring a hat. Those were my instructions. The plan was to hook me up to a small computer I would carry around with me to see what they could determine from my brain waves or something. I would sleep at home and go back the next day for them to remove the electrodes and review the feedback on the computer to rule out epilepsy. That's really the key to diagnosing MS - ruling everything else out but no one told me that until much later.

I happen to have a super cute wide brimmed blue hat and a soft denim button-up so I take a shower and I'm ready! I get to the hospital and the guy starts attaching electrodes to my scalp with none other than model airplane glue and he just keeps adding more. By the 15th one, I'm beginning to wonder about the hat. When he attaches the 32nd, and final, electrode, the hat is nothing but a joke. I wind up with an enormous "pony tail" of electrodes, bound together with a single rubber band that runs down my back and attaches to a small computer that hangs around my neck. I looked like a cross between the Predator and Terence Trent D'Arby. Not a good look for me. I decide the hat is just going to make me look more ridiculous but whatever, I may as well go big, right?

By the time I get home and take off the hat, the model airplane glue has started to make my hair a little greasy. By bedtime, it's downright disgusting. Did I mention this is a 24-hour test? I prepared myself for a greasy, uncomfortable night and decided to sleep on the couch to save Craig from having to wake up next to Predator/Terence.

Little brother calls in the morning to check on me. I grab my smokes and head out onto the back porch to chat with him a while. As we were talking, I caught a glimpse of myself in the sliding glass door and actually startled myself. My hair hung in big greasy strands between the electrodes, the rubber band had broken sometime in the night so wires were shooting out of my head in every direction. It was hysterical and awful at the same time. I was more than grateful for our privacy fence.

The walk into the hospital was embarrassing but I put my hat on and made it without too many stares from others. While someone removed the electrodes, someone else checked the computer data. Turns out, something had gone awry at 21 hours and the computer had stopped recording. I was pissed just thinking about having to repeat the whole thing but the doctor assured me they'ed gotten enough.

I. Do. NOT. Have. Epilepsy.

Sunday, January 19, 2020

Babies Aren't the Only Things that Take 9 Months

May 1999 - February 2000. I look at those 9 months between the giant giving me that first big squeeze and the diagnosis of MS like a pregnancy of sorts. Conception to delivery, with all kinds of strange changes to your body. None of the changes were good though and I knew there would be no perfect little human to show for it all so that's where the similarities end. 

I was the best pregnant woman on earth, no morning sickness, no water retention, no high blood pressure or any of the other things some of my friends experienced. It was pure and simple magic for me. In fact, I felt better than I had in years!

These particular 9 months were very different: my equilibrium was off; my left arm often stayed bent at the elbow and felt like it belonged to someone else; I often limped and random places on my body tingled, froze, went numb and/or hurt. I was exhausted all the time. I was scared but even more scared to admit to anyone else that I was afraid.

There were many nights when I'd lie awake thinking about what would happen to my family if I wasn't here. Some nights I could hear my mama crying in her own bedroom and another piece of my heart would break. I could see the fear in my sister's eyes when I had a "fit" in front of her. I could see the same fear in Craig's eyes when I stumbled or lost my balance. 

It seemed that every week I was seeing another doctor, having another test, trying to comprehend complicated test results that may or may not mean anything. While it was miserable, I did manage to find the humor. Like making up rules for when I had fits in public: 1) do NOT touch me, it makes it worse, 2) do NOT call 911, it'll pass, and 3) if strangers stare, create a diversion by acting crazy yourself. Throw yourself to the ground or try to lick your elbow or something! 

I told everyone not to worry, I was fine. I was thinking about getting a job at Braum's making milk shakes. I wouldn't need a machine, I'd just hold them in my left hand and let the fits do the work. 

Everyone had questions, most of them the same and my answers never  changed: yes, I am going to work; no, I don't need to take time off. No, I did not hit my head; no, I was not recently in a car a wreck. Yes, I'm stressed; no, I do not think I'm having panic attacks. 

I. Am. FINE!

Friday, January 17, 2020

Stick the Landing

Off I went to the neurologist, hopeful and anxious to find out what was happening to me. I figured neurologists are smart and certainly paid well enough so surely he would be able to diagnose the problem, give me a prescription to knock it out and I'd be on my way. Deep down, I knew better.

That visit was the first of many times I'd be asked if I'd hit my head ...been in a car wreck...any injury bad enough to have caused a scar on my brain? If I had, I probably would have remembered to mention it, right? It turned out to be a constant question along with my personal favorite "have you been under a great deal of stress". Honestly, life is stressful, it just is and up to that point, I'd managed my stress pretty well. Now the "you have a lesion on your brain" announcement had me pretty freakin' stressed out.

Needless to say, he did not, could not, give me an answer as to what was wrong with me. He wanted to run some tests; an MRI with contrast, a 24-hour EEG, an eye exam, a test for epilepsy and, possibly, a spinal tap. The EEG was my favorite, it involved The Predator, model airplane glue and a hat - I'll save the particulars for another post so wait for it.

Home from the neurologist, no answers-more questions, I decide I need something happy. Craig and I take 3 year old Hannah outside to ride her tricycle. It's a beautiful day and her hair literally glows in the sunlight, she doesn't have a care in the world. I on the other hand, can only shuffle along and cannot feel my left arm at all. Craig decides I need a laugh and thinks JUMPING OVER THE BABY ON THE TRICYCLE will be hilarious and let me tell you, the leap was awesome! He cleared her beautiful blonde head and the tiny red bike with ease. However, he did NOT stick the landing! Landed at the edge of the sidewalk and I heard a big pop than a whole lot of cussing as he lay on the ground, clearly in pain. I obviously couldn't help him up so I sent Hannah inside to get her brother. DJ came and got him off the ground and with his support, Craig began to hop on one foot towards the house. Hannah was out in front, laughing and jumping all over the place saying "Daddy trying to get me" - she thought the whole thing was great fun!

Inside, I call Craig's cousin to take him to the ER from which he comes home using crutches for a severe sprain. I manage to feed us all, watch Tom and Jerry with Hannah and get her to bed. Get Craig situated in the recliner, ice pack, elevation, etc., then sneak outside to call my sister and fill her in on the day's events. Little did I know, we were just getting warmed up...

Collapse into bed, willing myself to relax and get some sleep, weird noises from Hannah's room. I go in without turning on the light and go to her. Says she doesn't feel well so I start to lean over to feel her head and...surprise...whole left side freezes again, causing me to sit down on her bed quickly before I fall. Feel something weird on my hand and the back of my right leg (because the left one isn't feeling anything at the moment) and realize...I've just landed in a a puddle of PUKE! That explains the weird noises I'd heard. I definitely DID stick the landing or, rather, the landing was sticky.

All of the sudden, like an angel, I see my mama standing in the doorway. She'd heard the ruckus and come to my rescue. When I could move again, she stripped the bed and got everything into the washing machine while I cleaned Hannah, and myself, up the best I could. Our make-shift bath included washing a big section of her long blonde hair in a giant plastic cup from some BBQ place and a whole lot of baby wipes. I silently, irrationally kept repeating that line from the movie Babe "That'll do, pig, that'll do".

It. Would. Have. To.

Sunday, January 12, 2020

WTF is a Lesion?

As instructed, I followed up with my doctor on Monday who immediately set me up for an MRI. Didn't even know what an MRI was at the time but I was so sick, I didn't care. I could hardly move my left arm, it felt like it belonged to someone else, and I could barely walk. I couldn't pick my child up, I couldn't drive, I couldn't go to work. I felt like I might be losing my mind. So I went for the first of what would turn out to be many, many MRIs of my brain and spinal cord.

A couple of days later, my doctor called. One of the first things he said was "there is a lesion on your brain". Honestly, I don't remember anything he said after he dropped that little bomb in my ear. It seemed like everything around me just stopped. I stood in the middle of the kitchen, holding the phone but not really listening because all I could think was what the f*** is a lesion? Was that another term for tumor? Did I have a tumor on my brain? Could a lesion kill you? 

When I finally came back to myself, Dr. Z. was saying that he was going to get me in to see a neurologist as soon as possible and that I'd be ok; I should just rest and try not to worry. So...maybe a lesion, whatever it meant, can't actually kill you?

I hung up and went straight to the bookshelves for the dictionary - yes, it was that long ago - and looked up this new terrifying term. The definition didn't explain much, just "damage or abnormal change in the tissue of an organ" usually from injury or disease. 

The nurse called within an hour to let me know I had an appointment with the neurologist later that week. Maybe he knew what a lesion was and why I had one on my brain. 

Fingers. Crossed.

Tuesday, January 7, 2020

I Don't "Look the Type"...

Within a few days, I knew I was in real trouble. It appeared that the giant and his sidekick that controlled the left side of my body had settled in to stay. I never knew when or where I'd be frozen and squeezed half to death. It could be every 10 minutes or a few hours in between; I was scared to pick 3 year old Hannah up for fear I'd drop her, I was scared to drive, hell, I was scared to stand up!

I began to refer to the episodes as "fits" for lack of a better term and soon enough, I wound up in the ER. Maybe I was having mini strokes - test results negative. Maybe I was having seizures - test results negative. Let's do blood work and have to wait 9 years for the results - concerning. Finally, the doctor comes back in and says they need to rerun blood work because the first test results showed positive for every single illegal drug known to man and I just didn't "look the type". I don't even drink alcohol. Obviously, 2nd blood test showed nothing at all unusual.

Apparently I did look like the type of person that might have panic attacks. Could that be it? Was I  stressed? Did I have a history of mental illness? This was the first of many, many times that was discussed and man did it piss me off! Why yes, I am stressed now, wouldn't you be? But I'm not crazy, my mom had me tested!

Of course, I didn't have a single "fit" in the many hours I was at the ER so...go home they said and follow up with your family doctor on Monday. In the meantime, take this anti-seizure medication that turns you into a zombie. So. Much. FUN!