Body Betrayal

Body Betrayal
Dorcas Annette Walker

Once more I hit the high peak of starting to have more good days in a week than bad. Talk about ecstasy. The only problem is that on good days there isn’t enough hours in the day for what all I really desperately need to do much less desire to get done. I have become a very greedy person. How can I make a normal person understand what sheer bliss it is to feel like myself and be able to do simple tasks like take a shower, get dressed, or comb my hair without totally depleting all my energy? All the stuff one does to start the day without ever thinking about it. On a good day the past seems like a bad dream or nightmare and I think surely it wasn’t that bad. Maybe I was just being lazy or had gotten into a rut without realizing it. I hit reality though real fast the next morning when I wake up feeling like I’ve been run over by a semi or am up in the wee hours of the morning struggling to get my pain level down enough to be able to doze off. And so the roller coaster of life goes on for me. I know I should be used to it by now. I certainly have complained plenty and yet it still takes me by surprise every time my body betrays me and I crash and land back in bed. Deep inside hope refuses to die and the belief that I someday I will beat this crazy disease that controls my system.

This summer I really needed some good days as my son was getting married. I wanted to get my house back in shape before out-of-state relatives came to stay with us over the weekend. They know that I am not well, but still it hurts my sense of pride to have anyone see what level my housekeeping skills have dropped to. I know that I will probably never again achieve the status of being considered a perfect housekeeper with everything in tiptop shape like before, but I shudder at what my poor house has been reduced to. It reminds me too much of my own body with dust laying thick over every surface, cobwebs hanging from the ceiling, dirty bathrooms, and floors that I am unable to keep up with. Maybe we should start charging admission over the Halloween season as the local haunted house. I can almost see my house deteriorate before my eyes. Now I’m fully aware of all the energy spent that I automatically did on a daily basis without thinking. So realistically I knew that it would take me a good month or more not to mention my wanting to get my flower gardens in order once more.

I made several lists to break down the chores I wanted done and each week I’d choose one major chore. The only problem is that by the end of the week I’d realize that I hadn’t gotten started on what I planned to do as I would have enough bad days that my good days would be spent trying to catch up on overdue necessary tasks. Each week I’d revise my lists and cross another chore until it was the last week and realized that I would have to focus on simply getting my house civilized and forget a thorough cleaning.

My husband took me shopping the weekend before the wedding to buy a dress. We also made a couple stops to get some things to prepare for the company. I noticed my right foot bothering me, but I didn’t pay it any attention as I’m so used to ignoring low levels of pain. That night my toe still hurt so I decided to check it out thinking that it probably was my big toe, which swells up whenever I am up on my feet very long. One day I will need surgery done on it. Both of my big toes turn inward and rub blisters on the second toe so I wrap them up in gauze and tape to give relief and put off the evil day of surgery. To my shock my second toe had swelled up twice its size, was dark reddish purple, and I had a red streak running down my foot. I soaked my foot in Epsom salt water and realized that I needed to keep my foot elevated. The next evening it still looked bad. As soon as Dana saw my toe, he declared I needed to go see the doctor or next I’d lose my toe. Since it was Saturday I decided to wait and see if it wouldn’t get better by soaking and elevating it a couple of days. When my son saw my toe he told me not to worry that he would get a wheelchair and wheel me down the aisle at his wedding the next Saturday, immediately rousing my fighting spirit making me determine that I would walk down the aisle on my own power. I now had no choice, but to keep my foot up in the air.

Sun morning I woke up to discover a red rash all over my body like some kind of a reaction. I tried to think what on earth could have caused a reaction to flare up. Then I remembered the last time Dana had gone shopping he accidently picked up another brand of the regular Irish Springs soap that we use. I didn’t think a thing of it at the time as I have never been allergic to soap before. Guess what? Something in my system decided to act up so I started popping Benadryl to get the reaction under control. Now not only did I have to keep my foot up, but I was feeling itchy and miserable the very week I was supposed to be focusing on cleaning my house! By Tuesday my foot was looking better and the red streak down my foot was gone, but as soon as I stood much on my feet my toe would swell back up. The worse nightmare of my life was coming to pass. My company would find a filthy house. I was angry and frustrated at my body’s betrayal.

My daughter came Thursday morning- the day everyone was arriving- and worked circles around me getting my house civilized. We barely got the house cleaned and beds made before my sister and her kids arrived. Over the weekend everyone buzzed around me telling me every time I turned around to sit down and rest as they had everything in control so I behaved myself trying to save energy for the wedding. I was thrilled to wake up on my son’s wedding day feeling like myself. I sailed through the wedding in fine shape and made it back to the house that evening before I crashed into bed. My sister and niece washed up all my towels and cleaned the bathroom before they left. Then my husband’s Aunt stripped all the sheets off the beds and washed them, swept all my floors, and cleaned the kitchen before her and her husband left. Talk about feeling spoiled. I was left with a clean house. I should have had plenty of energy, but instead I staggered back in bed. I keep working trying to jump start my body to get it moving again, but it is very slow going. Such is life with a body that without warning betrays you.

The Sideways Life

The Sideways Life
Dorcas Annette Walker

I got another tick bite so I am back on antibiotics again. Rats!!!!!!!!!!!!! And just when I was starting to feel normal. I was outside on a warm sunny day hanging up some wash and puttering around in my flowerbeds a little. I didn’t soak in the tub like I usually do after being outside as early that morning (around 3 am) I had taken a hot bath after waking up in pain to try and get my body relaxed enough to go back to sleep. Instead I took a shower.

The next morning as soon as I woke up I felt something on my back. It was a seed tick. I couldn’t reach it so I woke up my son, who tried to get the tick out, but the tick was embedded deep in my skin. I ended up at the doctor’s office where my doctor had a time trying to get the tick out. He said it was the worst he had seen. Like usual the nasty critter had bitten me three times instead of once. So my doctor put me on antibiotics for a month to make sure that my Lyme’s stays in remission.

I know I should be thankful for the dear pills, but they make you so sick. Instead I am feeling grouchy and out of sorts. My back is sore from where my doctor dug around to get the tick out and each of my bites have spread out in a rash that are hot and itchy. I’ve made a paste of oatmeal, which I keep putting on my bites that helps some. I’m wearing loose light PJ’s as anything that keeps in my body heat aggravates the tick bites and wouldn’t you know it my bites are located at the back of my waist.

I have to keep moving around as I can’t sit up against anything for long. At night I have to sleep mostly on my stomach, which throws my back out and aggravates my spine as my hips bother me (thanks to arthritis) if I sleep sideways very long. What fun! So my nights are spent rotating my body all night long. I feel more like a roasted rotisserie chicken by morning than a rested human being. I stagger through the day feeling tired and sick. When I get too overwhelmed I collapse and take a nap. Ever try reading a book or watching a DVD sitting sideways? Maybe I should write a book on how to live sideways?

The Clock of Life

The Clock of Life
Dorcas Annette Walker

My life is measured by the clock
Tick tock, tick tock.
Beating out the time
Tick tock, tick tock.

Sounds in the stillness of life
Tick tock, tick tock.
As time marches on
Tick tock, tick tock.

The mantle clock measures each moment
Tick tock, tick tock.
Each second, minute, and hour
Tick tock, tick tock.

While the Cuckoo Coo clock echoes my life
Tick tock, tick tock.
Like the bird held captive
Tick tock, tick tock.

Freedom for a tantalizing moment
Tick tock, tick tock
Then shut back into the box
Tick tock, tick tock.

I want to stop the clock
Tick tock, tick tock
And capture the fleeing seconds
Tick tock, tick tock.

Hold back the time that races past
Tick tock, tick tock
While I sit on the sidelines of life
Tick tock, tick tock.

The grandfather clock sounds out
Tick tock, tick tock
Ponderous tones that grab attention
Tick tock, tick tock.

Reminding me that I am not alone
Tick tock, tick tock
As majestic music surrounds me
Tick tock, tick tock.

Though my life is inactive
Tick tock, tick tock
I too have worth
Tick tock, tick tock.

As long as I am faithful to do my best
Tick tock, tick tock
And make each minute count
Tick tock, tick tock.

Running With the Runs

Running With the Runs
Dorcas Annette Walker

I suffer with an irritable bowel syndrome (IBS) that can wreck havoc on your life. Thankfully by watching what I eat most of the time I do okay. But… if I get lulled into a false sense of security thinking that troubles with my bowels are a thing of the past or forget that IBS lurks within my system it will hit unexpectedly with a great force and drain precious energy. I know I sound like some old lady in a nursing home or someone from the group of ancient tottery folk where life revolves only around their bowels. Being a minister’s wife you have interaction with a lot of senior citizens so over the years I’ve heard oodles of details about bowel problems. Now horror of horrors here is my story of the bowels.

I realized that something I ate didn’t agree with me when a couple of hours later I hit the toilet and had diarrhea. Usually one occurrence is all that I have. So when I had a run for the toilet one evening I wasn’t too alarmed. Then I kept cramping and hit the toilet a second time. Dummy me. I didn’t take anything figuring that by morning I’d be okay. The next morning guess what? I paid another visit to the porcelain throne. This time I dosed myself with Kaopectate. Even though I watched what I ate (not much since I was feeling bloated and having annoying cramps) I made another visit to the bathroom. By now I felt quite drained. I only drank clear liquids and nibbled on toast or dry crackers thinking that surely the next day I’d be back to normal again without life revolving around the toilet. I do have better things to do and I was tired of living in the bathroom. Still to stay on the safe side I kept up my meager diet. Then I had another episode- you don’t want the details, trust me- and dosed myself again. That night I was cramping and miserable enough that I had trouble falling to sleep. It finally registered that from previous incidents I could drink the entire bottle of Kaopectate, but it wouldn’t stop the diarrhea. The only thing that worked effectively was coke. So my loving long-suffering husband around midnight went to Wal-Mart and got me some coke. It was a long night between sipping coke and trying to get comfortable enough to sleep.

The fourth day I was quite weak, but at least the run to the toilet had finally stopped. I kept up my dry diet and drank coke all day. By the fifth day I was able to slowly start eating more foods without repercussion of my bowels, although I still drank coke, which to me is like medicine. I know the younger generation won’t understand, but I was raised without having soft drinks around and all through my married life we didn’t keep soft drinks on hand. I really don’t care for them. I’m a tea drinker. So to me drinking coke is the same as taking medicine. But when I get desperate I gladly drink the stuff to stop the diarrhea. By day six I declared myself normal and cautiously left off drinking coke. So when I find myself running with the runs I hit the coke. Nothing like having to keep a bottle of coke nearby for security, huh?

Bureaucracy Blues

Bureaucracy Blues
Dorcas Annette Walker

I finally got the official letter from the judge I had been waiting for six months. It was supposed to have arrived in six weeks. I carefully opened up the envelope knowing it contained either hope or despair. The words jumped out off the page at me. I had been denied disability. I tried to concentrate reading through three pages of explanation why I had been denied. Stunned I sat in my recliner as tears ran down my face. Almost four years have passed since I first applied. Anger at all the humiliation I have endured just to get to this point overwhelmed me. My faith in democracy and governmental fairness bottomed out.

It was a stressful step for me to finally acknowledge that my body wasn’t going to return to normalcy any time soon where I would be able to work. Every day I kept hoping, thinking that surely I’d be better the next day or the next week. But reality finally stared me the face. No matter how hard I struggle, most days I can’t get dressed or do simple household chores. My husband had to resign his pastorate due to my health and scramble around to find work for us to live on in our remote area of the Tennessee Mountains. As bills began piling up I realized I needed to see about getting medical coverage. Thus began my personal education with governmental bureaucracy.

I was informed at the local office in order to be eligible for any medical help I had to be single, pregnant, have under-age children at home, be a senior citizen, or declared disabled. I’ve been married almost thirty years so I wasn’t planning to divorce my husband. Being a grandmother with adult children I didn’t consider pregnancy an option either. And even though my body feels like I am in the senior citizen bracket my age doesn’t match so the only option left open for me was to apply for disability. I was sent several papers to fill out and had to send in proof that I existed, was an American citizen, and that I had no oil wells or off shore accounts in my name. I also signed several medical release forms and had my local doctor fill out a form saying that I was disabled. I was informed I’d hear back within thirty days. After six months I received a letter telling me that the state needed their doctor to evaluate me and was given a date and told if I didn’t show up I’d automatically be dropped. This involved traveling an hour away. I fervently prayed that I would have the strength to get dressed that day and popped extra pain pills as any traveling increases my pain.

Now I’m the kind of person who has spent my life hiding any signs of sickness or discomfort especially when I am out in public. As a minister’s wife I’ve learned to keep smiling no matter how I feel. To me it was embarrassing enough that I limped and had to concentrate to keep my balance. In a spirit of independence I had put away my walker. The state doctor told me (off the record) to put off having any surgery on my foot during my evaluation and I was informed I‘d hear back within thirty days. Three months later I received an official letter in the mail telling me that I had been denied. Even though it was obvious that I couldn’t do any hard manual labor they felt that I could do sedentary work.

I tried to figure out how I could work part time when I didn’t know from one day to the next if I was going to be able to get out of bed. I appealed and was told that my case was sent to Knoxville where it might be nine months until my case came up before a judge. Nine months later I found out that my case was still hung up as the court was two years behind on disability cases. After hearing from several sources that the only way to get a favorable decision was to have a lawyer represent me, I contacted our local lawyer’s office. An appointment was made to being paperwork. It was quite embarrassing to admit to our lawyer and staff how finically desperate we were. I had become an expert over the years at stretching our limited resources and hiding any signs of poverty. Even though they were kind and tactful, I still broke down under the stress of embarrassment wishing desperately that I could just forget about trying to get disability and be able to work.

I had been raised with the motto that hard work never hurt anybody and if a person didn’t work they shouldn’t eat never dreaming that I would get to the place where I would have to ask for government assistance. I always enjoyed the satisfaction of doing work whether it was physical or mental and living a very active lifestyle. Now suddenly I was struggling to accomplish basic things like get a shower, brush my teeth, or get dressed. My local doctor was frustrated as without any medical coverage I am quite limited in what medicine I could afford. I was already on a couple of low income pharmaceutical plans that sent me free medicine through the mail involving more paper work for my doctor and me, but am unable to have more specialized testing done. To add to my stress I was being bombarded with bills from the doctors I had already seen, lab work that had been done, and the local hospital where I had undergone testing. It didn’t alter the fact that I was working on trying to get the disability coverage that would pay my bills, they wanted their money now. I couldn’t blame them. We had always paid our bills on time and had good credit, but at this point we were barely surviving. Even so I started sending a small check to each creditor - money we could ill afford to spare and that wouldn’t get reimbursed. Despite faithful monthly payments, I began getting threatening letters through the mail. Then a couple of the accounts were turned over to credit agencies and evening and weekend phone calls. I quickly discovered that I couldn’t reason with these people. They flatly refused to believe that I couldn’t work and kept demanding payment, which only stressed me out and put me back into bed every time I talked with a creditor. My lawyer finally told me not to answer any more phone calls and tell them to contact him.

As another year went by I begin to wonder if the government hoped that I’d die before my case came up or I’d suddenly get better and be able to work so they wouldn’t have to bother with my case. After another year I received an official letter telling me that my court date had finally been set. It all seems like a bad memory to me now. I only remember that I was in a lot of pain from traveling, had to hold onto someone’s arm in order to walk, fought to stay awake to think, and couldn’t remember simple things that I should have known. Dana said that the police women, who searched me, told him that she hoped I’d get approved as I needed to be on disability. In other words I’d have been mortified if I had been in my right mind. My lawyer was convinced that I would be approved. The denial in my hand stated otherwise. The judge felt that there wasn’t enough medical evidence to support my claim of disability as my doctor failed to note the times I came to his office on a walker, when I had fallen at home, and the office visits of intense pain. The judge felt that if I was as bad as was claimed I’d be on more medication and would the doctor and specialists more often. Due to lack of medical evidence the judge ruled that there was no reason why I couldn’t do manual labor or work full time.

The irony of it all hit me. I am only able to get a shower every three days and dressed once a week, yet I am considered fit for fulltime work. My lawyer’s office called me to let me know that they are re-appealing my case. I was also informed that I can open up a new case and was encouraged to see my doctor more regularly. But why? What else can my local doctor do for me without medical coverage? And why keep running up medical bills considering I already have medical bills that my house is being threatened over. My husband is also angry at the system. Every day he drives people to the doctor and hospital, which are on disability, people who can get around without any problem. Some are known to be using the system having to shop around for a doctor to give them a prescription or find a drug store that will fill their prescription as they are black listed, yet they still remain on disability. Meanwhile I remain housebound rotating from my bed to the recliner. On good days I shuffle outside in my PJ’s hoping and praying that one day I will get back to normal where I can once again work. I try to remain focused on my blessings. Thinking about governmental bureaucracy only makes me blue.

The Mocking Bird

The Mocking Bird
Dorcas Annette Walker

I have a mocking bird that sings in my ear all year long. Each day I hear its song. Sometimes the song is cheerful giving me hope while other times the song mocks me. When I wake up feeling normal I love to hear the mocking bird’s song. I feel that never again will my body betray me. The pain and overwhelming fatigue is just a past nightmare. I am getting better. I feel stronger. There is nothing wrong with me. Who cares if I am going slower? At least I feel normal again. Sure I can get dressed each day. Hope soars high within me.

The next day I wake up with the awful sick feeling again. Now the birdsong has turned into a noisy harsh sound that makes my head hurt. My body refuses to move when I command it and simple tasks overwhelm me. It is hard for me to concentrate and I feel dizzy. If only the mocking bird would stop. I cover my ears but the song resounds in my head. I can’t get away from it. I try to ignore it thinking positive thoughts. What can I wear that doesn’t need ironed? Who cares if I can’t comb my hair? At least I have changed my clothes. But all I hear is the mocking echo of the dratted bird. Why doesn’t it go away and pester somebody else? Tomorrow will be better.

The next day I feel worse instead of better. The mocking bird’s song is now a taunt. I am slower not faster. I feel angry. I will not let this dictate my life. My heart sinks when I see my face in the mirror. That old looking worn-out woman with uncombed hair is not me! I will comb my hair today no matter what. If I get dressed I will not have enough energy to comb my hair. So I compromise. I choose to comb my hair instead of getting dressed. When at last my hair is combed I feel civilized. I am normal no matter what the crazy bird says. I lie exhausted in my recliner for the rest of the day. Tomorrow will be better.

Tomorrow comes and I force myself to get dressed by noon. I will not give in. Forget about combing my hair. I will not listen to the mocking bird’s taunt. In two hours I can no longer stay awake. I change back into my PJ’s and barely am able to crawl back into bed. Who cares what the crazy bird says? I was able to get dressed three days in a row before breaking my record. I will just start over again. I refuse to give up. The mocking bird is still singing outside my window as I drop off to sleep. I cannot compare myself to others or to what I used to be. Instead I have to find what is normal for me.

New Year's Resolution

New Year’s Resolution
Dorcas Annette Walker

It’s that time of the year again when I evaluate where I’ve been, what past goals have been accomplished, and what new goals I want to set for the coming year. Before Lyme disease it always was a challenging and exciting time. Now I use this time to try and measure whatever progress I’ve made in the past year.

Living in the slow lane of life it is easy to miss what I’ve accomplished overall so I check out where I was a year ago compared to now. Then I discover what I have gained. Oh not the speedy trips of before by any stretch of the imagination, but even one mile now-a-days is an accomplishment. I’ve discovered that I actually take more satisfaction in my one mile than all the past racked up miles of goals finished that were taken for granted in years past. Because now I have had to work hard for each inch gained whereas in yesteryears I took my top speed as a matter of fact. Before when I got behind in my schedule all I had to do was push down harder on the accelerator and presto my speed would pick up. But now even though I keep the pedal jammed to the floor I am lucky to hit five mph. Bumps and pot holes slow me down not to mention the cross winds of other vehicles whizzing past me without the courtesy of slowing down or giving me a wide berth. I can’t say that I blame them. After all I do look like a broken down piece of junk that needs to be towed. I try to keep close to the edge and often pull over out of everybody’s way to avoid causing traffic jams. Sometimes I have to stop and give my steaming engine a much needed rest. Nightmares are when I hit a working zone. That’s when I really get bogged down. But hey I made twelve miles this past year. Not bad considering I only did six or less some other years.

So I’ve decided, uh… fasten your seat belts that this year’s New Year resolution is to try and get dressed each day. I know. I know. Whoever heard of getting dressed for a New Year’s resolution? I used to take getting dressed every day for granted too. But maybe if I push another inch I can get dressed, stay up on my feet, and if there are any downgrades I might even be able to get some much needed chores done too while I’m on the roll. Now that’s what I talk about speeding. I’ll be happy to cheer for your many cross country trips; just don’t smirk at my simple goal. It wasn’t that long ago that I was hung up in a garage at a complete standstill. So compared to that I am really moving.