Sunday, March 8, 2020

Pick Your Poison

Next up, review all the materials and choose a disease modifying drug that may or may not work. That was the kicker, there was no guarantee that any of the medications actually worked. Of course there had been clinical trials and they were all approved by the ADA and supposedly they might slow the progression of the disease but nothing was going to stop it.

I poured over the literature, watched the videos and picked my poison. There were only 3 medications to choose from, all injections so to me, it was a no brainer. Who wants to do a shot every day or every other day when you can do one once a week?? I'll tell you who...those that don't know the difference between subcutaneous and intramuscular, that's who. That was my reasoning: getting stabbed once a week is better then daily or every other day. I had no idea it would mean a 1 1/4' needle that went all the way into the muscle vs. tiny needles that injected the medication right under the surface of the skin. You learn something new every day, right?

The nurse came to my house to show me how to administer the shot, had me practice on an orange. "Throw it like a dart" she said, "it'll slide right in." Then, aspirate the needle to make sure you haven't hit a vein, then push the syringe in and the medicine will go into your leg. Push slowly though, and relax your muscle. Big deep breaths and a quick little goes nothing...

I threw the needle just like I'd thrown it into the orange a dozen times. Next thing I knew, I was staring at two holes in my leg and the full syringe in my hand. It had gone in, bounced out, gone back in and out again and I wound up with 2 holes and no medicine in my body. The nurse chuckled and I almost stabbed her in the eye with that needle. Damn, that hurt. 

Lay the needle down, step away for a few minutes and go back for round 2. This time, the needle stayed in my thigh. Success! I have to say though, that was the last time I ever administered the shot. For the next 11 years, every Friday night Craig gave me my shot instead while I read a magazine and pretended it was happening to someone else.

While everyone else was looking forward to the weekend, I grew to dread Fridays. TGIF my ass. I was tense all day and my anxiety would reach a fever pitch the closer we got to shot time. Mama would keep Hannah distracted while Craig gave me the shot (not to mention, she herself couldn't handle it). There were only a few times when he hit a vein or worse, a nerve, and we had to start over and only once when I had a muscle spasm in my thigh just as the needle went in, did we actually have to stop halfway through, Needless to say, I wound up with a half dose that week. 

The pain from the shot was bad but the side effects were worse. For close to a year, I'd lose 24-36 hours every week to flu-like symptoms: body aches, fever, chills. All I could do was try to sleep through it so Craig would wake me every 4 hours and cram more Tylenol down my throat. I would cry in my sleep.

I was afraid that watching me go through that over and over was going to scar Hannah for life so I dreamed up what we called TV Night with Daddy. Every Friday night, she and Craig slept in the living room on an air mattress. They'd make popcorn and watch TV. It was all about distraction but it was big fun for her. Something special just for her and her daddy. Eventually the doctor gave me a prescription for a high-dose ibuprofen and a fast-acting anxiety medication and they helped somewhat but I often still felt hung-over and groggy the next day. 

I figured it out once, I took 572 of those shots, that's 286 per thigh if you're wondering. Every now and then, I'd hit a wall and think I just couldn't take it any more. But every single week, take it I did, no matter what. I just kept telling myself I owed it to those that loved me. Even though I hated it, even though there was no guarantee it was even working, I'd dig deep, for them.

Praying. For. A. Pill!

Friday, February 21, 2020

D Day

Sometimes life attacks me. The final week of February, 2000 was a full-scale assault. I took a new position at the company I worked for, my house flooded, my stepson got suspended (again) and my test results from the spinal tap came in.

The nurse called and said the doctor wanted to see me the following day. I said "I'm too busy, can it wait until next week?" (Obviously, I was back to stalling.) She responded by putting a super mean nurse on the phone that told me it could not wait, they had an opening at 10am and it was important I come in.

If you know me at all, you know that I'm a bit stubborn. I don't like to worry anyone and I like to stand on my own two feet. Has all of that gotten me through life so far, yes; do I push it too far at times, absolutely. 

I insisted on going to the doctor alone. No husband, no mama, no sister, no friends even though they all offered to go with me. Even today, 20 years later, I have no idea what I was thinking but at the time, it made perfect sense.

When the doctor said "you have multiple sclerosis", I didn't have much of a reaction. It didn't exactly come out of the blue, I'd been expecting it and honestly, I was relieved that it wasn't Lupus. Somehow I'd been more afraid of that diagnosis so, yay for me!

He went on to tell me 1) stay off the internet - there are two websites allowed: WebMD and the National MS Society 2) get a 2nd opinion, it helps with acceptance and 3) there are medications available that might slow the progression of the disease, you'll need to pick one.

I left his office with a stack of VHS tapes and literature to research which therapy I wanted to go with and a flyer about a Walk the MS Society was putting on in March. Arms full and mind reeling, I headed for my car. As I crossed the parking lot, I heard this sound, this sad, mournful, awful noise that broke my heart. All of a sudden, Craig was walking toward me and it shocked me enough to realize the sound was coming from me. I immediately pulled myself together. 

He had apparently decided I should not be alone no matter what I said and was parked beside my car, waiting. He helped me put everything in my trunk and then just hugged me tight which almost made that sound start up again so I pulled away and followed him home.

After calmly filling him in about the diagnosis, I decided I had to tell Mama in person so I drove back to work and pulled her into a conference room, still calm and matter-of-fact. Next up was Dick, my boss/dad/friend/confidant/mentor. As always, he assured me everything would be alright and I almost believed him.

My Connie took it the hardest. Turns out Mama had already talked to her so she was in tears when she answered the phone. Inconsolable really, so I had to tell her that I hadn't just been told I had 6 months to live or anything and we'd deal with whatever was to come, together, just like always. I would be okay with her by my side. 

The calls to family and friends continued and I never cried, never let anyone know how frightened I was, just assured everyone that I was fine and would deal with whatever was to come.

And. I. Have.

Saturday, February 15, 2020

This is Spinal Tap

If you look it up, here's what you'll learn about the risks of a spinal tap:
When spinal fluid is removed during a lumbar puncture the risks include headache from a persistent spinal fluid leak, brain herniation, bleeding, and infection. Each of these complications are uncommon with the exception of headache, which can appear from hours to up to a day after a lumbar puncture.

Hooray, sound like fun! Let's do this!

My memory is blissfully spotty on this, I don't know if they gave me something to make me loopy or if it's just the brain's way of protecting the psyche but whatever, I'm grateful. I remember lying down on my stomach on the hardest surface ever known to man. Then, suddenly, I was in recovery and could hear the girl next to me crying through the curtain. I could tell she was in a great deal of pain so I asked if she was okay. She had just had her own lumber puncture and overheard her tell the nurse she was there alone. She was so sad,I tried to distract her until the nurse brought Craig in to get me.

He got me home and into bed where I had to lay flat for the next 24 hours. Next thing I knew my sister came in and deposited the tiny, warm bundle that was newborn Abbie next to me and suddenly, all was right with the world again. Napping with her for the next couple of hours was the magical healing potion I needed. It reminded me that whatever the results, I would be okay because I wasn't alone like that poor girl at the  hospital. I had a large network of support and so, so, so much love.

Screw. You. Spinal. Tap.

Monday, February 10, 2020

Lord, I Hope this Day is Good

Obviously, I lived through Christmas and thankfully have lived through 19 more of them. There were days I wasn't sure though, especially pre-diagnosis.

For months, every morning on the way to work, I would listen to that Don Williams song Lord, I Hope this Day is Good. That's all I was doing, hanging on a day at a time, hoping for the best.

I'd get home at night and be so exhausted I could barely move. Craig took over bath time for Hannah but I still got the first clean kiss afterwards. Mama took on laundry and most of the house work so I could spend my evenings playing with her. It wasn't the rough-housing we used to do because I would easily fall over and my left arm had very little strength left but I could play anything else she wanted! I still rocked her to sleep but once she was out, I was stuck in the rocking chair until someone happened to wander in to get her off of me. I tried hard to enjoy every moment I had with her.

I put off the spinal tap as long as possible after the holidays, always finding a reason to wait. Finally, the end of January, Hannah's 4th birthday behind us, I didn't have anything else to hide behind so I scheduled the appointment for mid-February. 

I was so torn between wanting an answer and fearing the answer, feeling out of control but fearing the loss of control that it finally got too much and...

I. Had. To. Know.

Saturday, February 1, 2020

All I Want for Christmas

Six months in and headed for the holidays, more tests, more doctors, still no answers but fewer fits at least. I mean, they'd still happen, randomly, sometimes a whole week apart giving me hope that whatever it was had maybe gone away. Then the giant would be back, squeezing and squeezing and my hope would dim, sometimes crushing me but still, a tiny light stayed. I was determined to live, determined to fight, determined to cherish every second of my life.

Another MRI, this time with contrast (dye), revealed that the lesion had grown and invited some friends. It was progressing and I was terrified but...I'm also strong, and determined, some have even used the word stubborn. I kept working (pulling over when the giant came and sometimes driving through him), I kept being Hannah's mommy, I went to every gathering, I just. kept. moving.

The neurologist wouldn't tell me exactly what they were looking for with all of the tests, it was more ruling things out. It was around Thanksgiving before words like lupus, multiple sclerosis, fibromyalgia, chronic fatigue, etc., started coming up during my appointments. There was one last test he wanted to run after which he could likely make an actual diagnosis. He wanted a spinal tap. Two things I knew about spinal taps, 1) it was like the epidural I had while in labor with Hannah and 2) during a procedure on Craig's back, they punctured his spinal cord - to this very day, I've never seen anyone in that kind of pain. Not much motivation there.

Another thing I knew was that if I was going to die, I didn't want my family to know before the holidays. I didn't want that hanging over everyone. So I stalled. The doctor wasn't happy but he couldn't force me so he made me promise to call right after the new year to set it up. Sure, I'd do that.

We went to see my grandparents that Thanksgiving just like always and I swore everyone to secrecy. I loved them more than anything and didn't want them to worry about me. If I felt a fit coming on, I'd hide in the bedroom until it passed. If  I stumbled, we joked about me being drunk. When I cried because I was afraid it would be the last time I ever hugged them, I went on the back porch. When we left, I think I cried all the way to Shreveport.

Even though we didn't have any answers by Christmas, there was still a rain cloud over our celebration. Hannah and Maddie were both 3 years old and Connie was pregnant with Abbie so everyone tried to focus on the girls. Watching them open presents and giggle, both of them so incredibly beautiful and full of baby joy was probably what kept everyone going.

While we celebrated at my house, I couldn't do much due to the awful fatigue I'd been experiencing and, of course, the ants. There were thousands of them crawling all over my feet and legs. It was distracting, maddening really, and while I can't say it actually hurt, it certainly didn't feel good and made it difficult to walk or stand for any length of time. There was also this annoying dead spot in my thigh and my left arm felt  "otherworldly".  But hey, I was alive for Christmas and I had successfully avoided the spinal tap I was sure would confirm that I would die soon. I was winning.

Right up until the time came for me to open a surprise gift from Craig. Mind you, my husband is terrible at gifting. He knows it so it's okay that I've said it. If I don't tell him exactly what to get, he now just gives me a gift card instead of the random, crazy things he used to get me. No more giant pink and blue southwestern style vase that matches nothing in our house; no more bubble heart earrings. Stick to the list honey. So this year, our 10th married Christmas, my husband decides to give me a beautiful silver link bracelet with a heart shaped charm that reads "more than the sky". That is how much we tell Hannah we love her. Not to the moon and back nor a bushel and a peck, more than the sky - there's a difference.

I'm so tired, I hate the giant, I'm sick of the ants and I'm scared to death, I take one look at the bracelet and completely lose my mind right there in front of my whole family, the babies, amidst the gifts and torn wrapping paper and love, I broke. Why did he have to pick this one Christmas out of so many to give me something so sweet, to get it so right?

I. Want. To. Live.

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!

Monday, December 30, 2019

A Glamorous Beginning...

April 1999

I had to pee. The door to our master bath is a few steps from the foot of our bed. I hopped up, walked in, took care of business then automatically reached to flush the toilet with my left hand. However, said hand didn't move from my side. With no conscious thought, I simply reached with my right hand and pushed the lever. Glamorous, right?

As I turned to leave the bathroom, it dawned on me that nothing on the left side of my body was doing what it was supposed to be doing. I propelled myself out the door, across the few steps to our bed, and collapsed onto my back. By this point, the entire left side of my body had seized up. My arm, bent at the elbow, pushed into my chest; my leg, bent at the knee, was a pillar of concrete; the left side of my face was drawn tight and it felt as though my chest was being squeezed by a giant, making it hard to breathe. It was as if someone had split my body with perfect precision, stealing all control of the left and leaving to right to do all the work.

Craig's face was suddenly floating above mine, asking me what the hell was happening, should he call 911, was I okay, was I okay, was I okay...? He looked as terrified as I felt. I knew it must look like I was having a heart attack and remember wondering if that was indeed what was happening. I'd never experienced a heart attack so how the hell was I supposed to know if this is what it felt like. The only answer I could get past the giant's grip on my chest was "my chest doesn't hurt" which wasn't quite true since it was being crushed but somehow I knew this had nothing to do with my heart. 

After a couple of minutes, I felt everything begin to unlock. Funny how sometimes mere minutes can feel like hours. Slowly but surely my leg started to straighten out, my arm began to slide out of it's frozen position across my chest, the giant's grip began to loosen and I could breathe again. What. Was. THAT?

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