Still me... by Debby Myers #WindowOvertheSink

Welcome Debby Myers to the Window today!

Hi, everyone – it’s been a couple of years since I wrote last about my Multiple Sclerosis. Can you believe it? I left you talking about all the ways I was trying to focus my attention on anything else except…of course, the Multiple Sclerosis. I am going to start with where I ended before talking about what keeps me going on my worst days. 

The best thing that has happened is the birth of my granddaughter, Joelle

Marie. Her name is a combination of her two grandmother’s middle names. The “Jo” is my middle name. My son wouldn’t tell me what they were going to name her the whole pregnancy. He would say “we haven’t decided yet.” Yeah, right…but I was so touched when I heard it. And she is so precious. She just loves Nana and Papaw too.  My children say that’s all the grandchildren I get, so we’ll have to wait on my two step-daughters, who say they may not have any. Or maybe wait for my oldest daughter to get married and we can adopt some. We have eight. I’m good with that, especially since they are all such great kids! Five boys and three girls. The time I spend with them right now is when I feel the best. I push myself when they are here. 

I still try to hide my struggles from my family. One day I will be a burden, but I want to delay that as long as I’m capable. Leading to a great thing that has happened in the last two years―I joined my MS online support group.

When I have questions or I’m feeling down, I can go there. Even though our symptoms are all different, somehow our feelings are all similar. We “get” each other. I’ve spent entire days in the chat room―comparing, sharing, and caring about all the others with this disease. It’s a large community and they are all strangers that have become MS friends.

Other good things that have happened. I directed and created my 20^th play for Ole Olsen Memorial Theater. I made it my last as a director. I will agree to co-direct or be an assistant director, but I can’t predict how I will be on any given day. I’ve spent 25 years with the organization. It is another part of me that is changing. Last time I wrote I was working on learning how to be this new person with this incurable disease. I still don’t know how. Aside from that, directing is hard, as I’ve written about. My last two shows I didn’t have a true assistant as they both became a part of the crew. Being the Publicity Director for the board meant I had all of that responsibility too. I just can’t do the shows at the level and with the quality I want them to be. Going out on top isn’t a bad thing, but having to go out at all…is. 

Finally, to update you on the Multiple Sclerosis itself…it’s progressing.

That’s the kind I have. I’ve had four more infusions of Ocrevus, which is the only treatment for Primary Progressive MS. It has, I think, slowed the progression. I’ve been “stable.” I have only had one new lesion in the four years since I was diagnosed and they found 17 lesions in my body. I have had a total of 10 exacerbations―they create new symptoms or enhance existing ones. They can stretch out for multiple days or weeks. They range from mild to serious in severity. You may also have different symptoms during different exacerbations. So, just like the disease itself, they are very unpredictable. There are only two triggers for exacerbations―stress or infection. These triggers increase inflammation, which is the biggest threat to MS. All of those I’ve had temporarily worsened the symptoms I live with every day. The last one brought on a new symptom, and so far, it’s not going away. Doc sent me for another MRI, but no new lesions. The new symptom was caused by an exacerbation. 

As I sit here typing this, I am frustrated. Both of my pinkie fingers are now numb and tingly. You wouldn’t believe how much you use your pinkies! Typing is one of the times when I notice most, but anything I do with my hands is now more difficult. When this symptom came on, I was just getting over a mild case of the flu, likely the trigger. Doc says it “might” still go away at some point. Ugh! She wants another round of intravenous steroids to see. NO! I have worked hard the last several months to begin losing that 40 pounds I’ve gained. I’ve lost 16 already and now along comes those steroids. It’s all so frustrating, but losing my pinkies sunk me into a week of depression.

I am just coming out of my funk. I spent more than a week in the house. I didn’t see anyone except my husband and we didn’t even talk much. He kept asking, “You Okay?” All I did was play computer games and stare blankly at the TV.

I kept rubbing my pinkies, thinking they would come back. When they didn’t, I cried and I slept for an entire day. My pity party was well underway. It was one morning last week when I was lying in bed drinking coffee with my blank stare scrolling through my phone when I looked up and something so subtle, yet so obvious, caught my attention. 

It was my own reflection in the mirror above my dresser. I looked like another person. All those times I asked myself “where did I go?” and all this time I’d spent trying to become this different version of me…wasted?  I was 56 and I challenged myself to not up no matter what. Had that changed about me, too? 

I glanced back at my phone. While I was sitting there scrolling earlier, I had come to the bottom of all my text messages. The name I saw on the screen when I looked down was Kurt. Kurt Schindler was one of my best friends. I started to read all the texts we had shared over the last couple of months of his life, clear up to the night before. With everything he was going through, he kept talking to me. He kept telling me he wasn’t giving up. He said he was thinking of me knowing even with MS, I was still beautiful, creative and smart. Kurt said he knew I wouldn’t let anything change who I was. Hmmm…

I got up, got dressed, fixed my hair, put on my make-up. Looking back in the mirror, I really felt overwhelmed with feelings. I sat down at my computer and started writing. I wrote four different articles that I hope to submit to magazines. I think I was more productive in that one day than I had been for at least a month. As I was straightening up my living room, I picked up the Snoopy quilt I had bought Kurt just weeks before he died. I wrapped it around me. Life (and death) brought me back, numb pinkies and all.

Kickin' the Habit by Debby Myers #WindowOvertheSink

They call it “Kickin’ the Habit.” It’s something I really haven’t tried too hard to do. My habit began the night my new boyfriend picked me up in his 1978 Mustang Cobra. Remember those? His had bright blue lettering. When I got in that car, I had that feeling. You know the one…damn, I feel cool! As we drove toward his house, he lit up a cigarette. My habit began.

In a few weeks it will be 40 years since my habit started. Forty years. It started with just a few cigarettes a few times a week. By the time I graduated, it was a few a day.

We had a big party the first weekend we moved into our place at college. Two roommates were sharing this great three- bedroom, two-bath, second floor apartment with me, complete with a balcony. It was at that party that I discovered they both had the habit, too. Great news! After all, living with a non-smoker would have made it more uncomfortable. They’d probably have made me go out to the balcony, even in the winter. People do that to you when you have the habit.

It was during that year that my habit grew into several smokes a day. I had been dating my boyfriend during that time. He had the habit, but only when he drank, which was often. We moved in together, soon learning we were expecting. We got married. I went to the doctor. She asked if I had the habit, but I lied so I wouldn’t get a lecture. I considered giving up the habit. I even slowed down. Yet I remembered the story about my grandma. She smoked non-filter cigarettes all the time. She had several children who all turned out fine. An excuse.

Soon after my daughter was born, my whole family was telling me it would be bad for her if I didn’t kick the habit. I used my grandma’s excuse. Plus, my own dad smoked, then my stepdad. They were all hypocrites. As my choices were really my own now for the first time, I made the first of many bad ones when I decided to continue to smoke. The habit had grown to a pack of cigarettes a day. I was 20, and it  has remained there since.

 I’ve had many friends with the habit over the years. I’ve also had many without it who have tried to talk me into quitting, telling me all the different types of cancer it causes, diseases, deaths. They must know I know all of that. I’d say, “The habit is very hard to break. Any habit, really. I have others. I bite my fingernails making, them look hideous, yet I love my toenails painted. For many years I’ve been addicted to sweet tea and Altoids.” They couldn’t argue with that.

Any habit is hard to leave behind because it’s the biggest form of change there is. I still don’t like change to this day. What would be the point of quitting now anyway? Isn’t the damage already done? So many excuses, 40 years’ worth.

One of the toughest challenges in defending my habit used to be defending it to my children. When my oldest daughter started to smoke, I didn’t know how to handle it. I, who handle all kinds of things with them, couldn’t handle this. They had all three seen me smoke since they were born. It was something else I’d been warned about. My grandma Betty would say, “Do you want them to have the habit because of you?” Ah, I could handle that when the time came. Not so much. Although I think the other two tried it, she is still the only one with the habit.

It’s funny how in recent years smoking has lost its cool. That was my original attraction, remember? The Mustang Cobra, the feeling…I do. Now you can’t smoke in so many places. Now I am frowned upon. Even by those who had the habit but were strong enough to break it. I’m a strong person, right? The problem has always been that I didn’t really want to. I like smoking. This time the excuse is that it relaxes me when I’m tense. Well, it does!

Heck, when I was diagnosed with Multiple Sclerosis, I found out one of the

causes was smoking. My neurologist saw on my record that I had been a pack-a-day smoker for 35 years. Like every doctor I ever admitted to about it, she told me I needed to quit. There are drugs now, patches, gum, support groups. She also told me she wouldn’t tell me again—it was my choice. My habit has become so expensive. I’m on disability now, living on half the income I had when I worked. Surely that $180 a month I spend on my habit would be better spent on paying my bills or buying food.

It was. It was my choice. Breaking my habit was now something I should really consider. My excuses just weren’t cutting it anymore. Smoking was doing all the things I’d been warned about and read about. It was affecting my health, my empty pocketbook, and one of my three children didn’t want me to smoke around his kids. My house, that I’ve lived in for 25 years, has smoke-covered walls and no matter how much air freshener I spray, it smells like smoke.

My mother-in-law had the habit, too. She is on oxygen 24/7 and suffers from emphysema. I might turn out that way, too―sooner than I realize if I don’t quit. Now they have those commercials. You know the ones. I might turn out like them, too. So, I made that list―the one with the pros of the habit matching the cons. I knew before I did it what the results would be. I’d never considered quitting before. Maybe the time had come.

I’ve had the habit myself for 40 years, but I’ve been exposed to it since I was born. I still might turn out to have a disease. The damage might already be done. I still might die from it. Quitting would be one of the hardest things I’ve ever done. I still might not succeed. Despite all of that, for the first time, leaving my habit behind is on the table. I finally want to “kick the habit.” January 1, 2020 is the date. Pray for my sanity! Pray for my weight (not to grow)! Pray for my husband!

A Change in Plans

I'm pleased to welcome my friend Debby Myers to the Window today. She has stories to share and a storyteller's voice to do it with. 

I try not to give too much writer advice--I'm not an expert by any means--but I know the place to start a story is where something changes. Debby's story today starts with a huge change. Please make her welcome. 

Life is what happens while you are busy making other plans. - John Lennon

Where did I go? Why am I feeling forced into being someone I’m not? Why do I feel like I’m gone? Only I seem to know that I’m never coming back.

February 22, 2016. One day I will not soon forget. A couple of days earlier, I’d been at work at my job as a co-manager for Kroger. Towards the end of my shift, my right leg kept giving out on me. It felt like it was buzzing, numb, prickly. I thought maybe I was just tired. When I got home, I went to bed.

When my alarm went off at seven a.m., I stepped out of bed and fell. I couldn’t feel my right leg at all. I sat on the edge of the bed and began rubbing my leg. That seemed to help bring the feeling back. I showered and got ready for work, all the while feeling the strange sensations in my leg. I started to feel a sharp pain in my back too. That’s when I decided to make a quick trip to the Redi-Med. I called my husband, who was very concerned. I called my boss to let him know I’d be late, but would be in after my visit to the Redi-Med.

That decision led me to the ER for a cat scan, blood work, and X-rays. The ER doctor said the tests hadn’t revealed anything, but because of the numbness, he was afraid it might be neurological. Neurological--what did that mean? Then he said they would be taking me by ambulance to have an MRI and see a neurologist.

Now, I’d never had an MRI before but just the thought of it terrified me. And an ambulance? Was this an emergency? What was happening to me? This was the beginning of my losing myself. I called my husband. He was on his way. He seemed terrified too. I called my boss. He seemed terrified too. Was I dying?

Once there, I was taken to a room in the neurological wing. For 24 hours after arriving, I sat and waited for someone to tell me what was wrong. I cried, I yelled at nurses, more symptoms arrived. Not only was my right leg numb, I still had the stabbing pain in my back and now I had this squeezing pain in my ribcage and I felt like my head was going to explode.

Finally, they took me for the MRI. Several hours later, a doctor came in. He said I had a mass on my spine, possibly a tumor. By this time, my daughters were there. Now they also looked terrified. A tumor? Were they going to remove it?

The doctor didn’t have any answers yet. He was not a neurologist. He said that they were going to do a spinal tap. What? They were going to stick a huge needle in my spine? Why were they testing my spinal fluid? Did they think this tumor on my spine was cancer? I’d been afraid in my life before, but nothing like this. 

I waited.

A neurologist came into my hospital room where I’d spent two of the most trying days I'd ever known. He explained that I didn’t have a tumor after all. He told me that the mass on my spine was a large sack of inflammation. The inflammation had been the result of my nervous system attacking itself. He said the myelin on my nerve endings had been eaten away, causing my nerves to send mixed signals to the rest of my body. This caused the numbness, buzzing, and prickly feelings as well as the stabbing pain in my back at the sight of the inflammation. It also led to the squeezing in my rib cage.

My first questions seem very stupid to me now. So, do I need to take some medicine? How long until I’m better?

The doctor replied, “You aren’t really going to get better. You have Multiple Sclerosis. There is no cure, but we will manage your condition.”

Multiple Sclerosis? Manage my condition? Wait a minute…I have to get better, right? He said I had had the condition for decades, that I had 15 brain lesions and two on my spine. He said I was lucky that I’d gone this long without an attack. He would send me home with steroids to reduce the inflammation and would see me again in two weeks. At that time, they would start me on an MS drug to help prevent future attacks.

He would initially take me off work for 90 days to see if any of my symptoms subsided enough for me to return. He also told me I should apply for disability. Oh no. I could surely go back to work, right?

The first MS drug I was given caused side effects. More symptoms. I had to go through four months of detox, which made me weak and nauseous.

My short-term disability was exhausted and I was terminated. My disability was denied. The doctor said he couldn’t give a definitive answer as to my ability to work yet and I had to file an appeal.

Shortly after that, my husband said he thought we should get a second opinion. He felt this doctor wasn’t invested in helping me like he should be. So, I got a new neurologist. She made me feel comfortable, because she didn’t pull any punches. But she gave me more bad news. My MS is primary progressive–meaning my symptoms are with me to stay and I won’t have remission, only progression.

So, let’s go back to the first paragraph. Where did I go? Why do I feel like I am gone? Because, in truth, I am gone. The woman I was before February 22 no longer exists. She worked 50 hours a week on her feet, supporting her household. She was a social butterfly, always on the move. She was trim and fit. She traveled. She played at the park or jumped on the trampoline with her grandchildren. She cooked, cleaned, and shopped. That woman is gone. That was me & now I’m trying to figure out how to be me again. To be continued…

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Debby Myers lives in Peru, Indiana with her husband, Alan. She has three grown children. She has four grandchildren who are the apples of her eye - Makenna,Taylor, Izaac & Jameson. Debby is a graduate of Maconaquah High School and International Business College, where she studied business management. Most recently she was employed as a co-manager for Kroger for 15 years. In the past she co-owned & operated a local day care for seven years, worked in development at the Honeywell Center for five years and "played" as a radio personality for Peru's former radio station 98.5 FM for nearly 10 years. Debby has been involved with Ole Olsen Memorial Theater for 22 years now. She has performed, worked backstage, costumed & served on the Board of Directors, where she now serves as Publicity Chairman. But her true love is directing. This season she will direct her 15th show. Debby is also a member of the Ole Olsen Hall of Fame. Since her diagnosis of Multiple Sclerosis in 2016, she has embarked on doing some writing. In her spare time she likes to read, listen to country music, and travel. Having been to 40 of the 50 states, her next destination will be the Eastern part of the US, particularly New York City to see a show on Broadway.  

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A year and a half ago, Debby visited Word Wranglers. Click on the link and read what she shared with us that day.