Lyme Light

New Year Resolutions

2011-01-10T10:56:00.000-08:00

I took a couple weeks to go back over the past year and evaluate where I could do better and maybe pick up my pace, uh.., not that I am wining any races or going over the speed limit in fast living in any measure so far. I am feeling stronger compared to last year and hope to be able to do more in the coming year. So once again I’ve made lists and worked out a schedule- if nothing else it keeps my brain cells active. I plan to try and work on my computer every day, write a magazine article each month, and start back working on my five books that have lain abandoned, besides doing my usual weekly newspaper article, and keeping up with emails. Then on a personal note I hope to be able to get my hair combed more regularly and dressed without expending too much of my energy level that fluctuates daily. I’m not promising miracles, but every bit will certainly help. I extend my sympathy to my poor family, who has had to see the bag lady dragging around for far too long already. Their patience with my blundering attempts to try and keep up with basic house chores helps my flagging self-esteem on bad days. Then I have tried to break down the long list of things needing to get done and kept in control around the house- like spider webs and dust. Whew! I may need a week just to recuperate from all my resolutions- just kidding! Like they say, it’s better to make goals and fail rather than not set any goals and succeed.

Snowy Days and Winter Colds

2010-12-15T13:15:00.000-08:00

Snowy Days and Winter Colds
Dorcas Annette Walker

Another winter has arrived up here in the mountains of Tennessee. This year I am really getting to enjoy winter time more. I’ve been able to go and walk in the woods kicking up snow with my boots savoring the whitened landscape and running stream as my dogs race around playing in the snow sending drifts of white flying everywhere. What joy it is to enjoy this winter firsthand, feel the biting cold wind on my face, the wonder of picking up a newly lain egg out of its bed of straw, and help take care of all the furry critters instead of being cooped up inside.

The only problem with getting out more is that you invariable catch some germs despite being careful and staying bundled up. I ended up coming down with a nasty cold for a couple of weeks confining me indoors once again as I doctored myself. Running a temperature, feeling weak, and miserable it seemed like the cold/flu symptoms would never end as I hovered close by the warm wood-stove. But to my relief one day I woke up feeling like myself again and ready to venture outdoors just as another snowfall came turning the world once again into a winter wonderland. This time I made some snow cream. I also love cooking a big pot of soup on my stove or baking something in the oven as winter gales blow outside my kitchen window. That's what I call living instead of existing!

Exercise, Green Tea, and Vinegar

2010-11-05T09:27:00.000-07:00

Once again I am back up on my feet. Yay! I still have to be careful with my foot as it tends to swell up if I am up on it too long, so I prop my foot up whenever I sit down in my recliner. I’ve heard that sprains take forever to heal and that once a person has sprained a foot that foot is weaker and easier to sprain again. So whenever I go outside I make sure to wear my sturdy sneakers for support.

Unless one has dealt with a chronic illness it is hard to explain the joys of waking up, feeling like oneself, and not having to worry about your body suddenly giving out accompanied by the sensation like you are going to collapse at any minute. When you feel stronger you try and capture each moment knowing that these memories will help sustain you on the days when your body betrays you again.

One thing that has helped me bounce back the most and be able to get around on good days is the fact that I have persistently exercised on a daily routine. Exercised when I’d wake up to find myself on the floor not remembering where I was, exercised when it took every bit of my precious strength that I had having to spend the rest of the day in bed or the recliner, exercised to strengthen my bones and help keep my joints mobile even when it hurt and seemed like I was wasting my time. The only days I don’t exercise is when my pain level is so high that I can’t do anything but exist, but the next day I hit the floor again even if I can’t do all the exercises in my regiment that I have worked out to help me the most.

Then the second thing I feel that has helped strengthen me is drinking a couple cups of green tea a day that I started when I was on antibiotics to help build back up my immune system. Sometimes for variety I’ve added peach or raspberry tea and even fresh mint from my herb garden for added flavor to my green tea. Drinking green tea has become a daily habit for me. When I am able to be up and around it gives me an excuse to take a break and relax for a bit; to calm my spirit and help me focus on what I want or need to get done for the day. Or soak up nature’s display while watching the birds rocking in my rocking chair on the front porch with my dogs sprawled around me in companionship.

The third thing that I started several months ago it putting a couple tablespoons of vinegar in my glass of orange juice that I drink each morning. Older mountain folk have told me about the benefits of vinegar. So I decided to try it myself. Then I read how it helps the body in several ways and how healthful it is. By mixing the vinegar with orange juice it camouflages the vinegar and makes the orange juice just a bit more tangy, which I find the best way for me to take. Sometimes the old remedies are the best.

Limping Around Like An Old Granny

2010-10-11T10:04:00.000-07:00

I have enjoyed getting out and about more this summer. I love walking down in the woods with my dogs, checking out the garden, rocking in the rocking chair on the front porch surrounded by all my furry pets, or going and sitting in the swing in our back yard and watching the chickens strut around in their pen. Even in the hottest part of summer I tried to stay active to help keep my strength built up.

One day while walking in the woods with my dogs on one of the paths that we’ve made, I turned my foot. I didn’t pay it much mind as without warning I will sometimes stumble or nearly trip. I haven’t figured out yet if my ankles are getting weaker or if it is just a side effect from the last bout when my Lyme came out of remission and I’ve had trouble with my balance since. The next day the weather turned quite cold and when my foot bothered me walking I figured that I probably was getting arthritis in my ankle. Since I have arthritis several other places throughout my body and I’m hurting all the time somewhere I just ignored the pain and kept walking on my foot. After a couple of days limping around I decided to check my foot and to my shock discovered that it was swelled up.

Dana was ready to hustle me off to the doctor to get it x-rayed, but since nothing was broken I figured why go to all that trouble only to be told that I have a bad sprain and to keep my foot elevated. So I have wrapped up my foot with ace bandages to support it and am trying to be patient and keep my foot up. Whenever I don’t my leg swells up too. Talk about being totally ratty! I am quite frustrated that I can’t go like I was and have been slowed back down again. How dare my foot do this to me! Now when I go to get up and walk I have to think first where I’m going and what I need to take with me and what I need to get. If nothing else my dear brain cells are getting a work out trying to remember everything so that I can save steps. Meanwhile I shuffle and limp around sometimes using a cane to help support my weight like an old granny. I can’t wait until my foot gets back to normal again. If only I had four feet like my dogs I wouldn’t be so helpless.

Summer Flu Misery

2010-09-03T08:59:00.000-07:00

Summer Flu Misery
Dorcas Annette Walker

I was doing better. In fact I almost convinced myself that I was normal once more. Sure it still didn’t take much to wear me down, but at least I was able to be up and around each day and feel more like myself. I did some canning, sewed my granddaughter some slips, and painted a gourd birdhouse. Doing things that I enjoyed puttering around with to help build back up my self esteem that living with a chronic disease destroys. I felt like I was controlling my life instead of my body controlling me. I was able to attend church nearly every Sunday morning and be with my church family and friends.

Then it happened. Somehow I got the flu bug. Overnight I became sick, started throwing up, and running to the bathroom. I hoped that it would be a twenty-four hour kind of flu. No such luck. Instead due to the fact that I couldn’t keep anything down- pain meds included- my pain level shot way up. I drank Sprite to try and get my stomach settled enough so I could take my pain meds. I wasn’t able to sleep day or night due to the nagging pain. Instead I survived in my recliner dosing off now and then totally exhausted only for the pain to jerk me awake into more misery. After two nightmare days of wishing I could die- anything to get away from the pain- I was able to take my pain meds and got my pain back under control where I could halfway function.

I thought the worse was over, but my intestines had another idea. They were in an uproar. The flu had triggered off my IBS. Eating anything solid would send me racing to the bathroom not one time but every couple of hours. I switched to drinking Coke (the ony thing that works when my bowels go crazy) praying that my stomach would handle the change as I tried to baby my insides along. I existed through each day praying that the next one would be better sleeping the day away in my recliner. By the time a week had gone by, when I finally got my intestinal system under control, I was very weak physically. Once again I had to inch my way- a slow and drawn out process- to gain back my strength.

I can understand why some, who struggle with Lyme disease don’t go out anywhere, but instead isolate themselves living totally inside their homes. It is a scary thought that every time you step outside your door you are at risk to catch something that can put you flat on your back after struggling so long to be able to function. If you aren’t careful your mind will play all kinds of games with you tying you up in knots mentally. But I refuse to let fear control my life. It is bad enough that my body takes over and controls me at times. So I am working on building myself back up to venture forth and not cut myself off from being with my friends. It’s a fine line of guarding oneself, using wisdom, and living life as normal as possible with Lyme’s disease.

Caught Between Rock and a Hard Place

2010-08-05T11:48:00.000-07:00

Caught Between a Rock and a Hard Place
Dorcas Annette Walker

It is positively ratty to be in the position of having to depend on drugs to survive- not that I’m not grateful for all the advancements in the medical field. Believe me I am very thankful for the pharmaceutical companies that have programs for disbursing drugs to low income folk or those with no medical insurance. As one of those dependent on the pharmaceutical companies for my medications, I find myself unfortunately all too often caught between a rock and a hard place not of my choosing.

The first negative aspect is the reams of paperwork one must fill out. I understand the concern of the pharmaceutical companies needing to make sure that a person is qualified. But entire forests could be saved of once you were approved and in their computer system to only be questioned and upgraded over the phone instead of having to continuously fill out entire applications over and over with the same information- not to mention all the postage involved. What really gets interesting is when you have more than one pharmaceutical company to deal with. Then second part is the continual monitoring of your meds to make sure that you keep enough of your medication on hand so you do not run out. I’ve learned to keep an eagle eye on my prescription bottles and as soon as they are half empty to start the process of resubmitting a form for a refill. Even so that still doesn’t guarantee the desired results.

Recently after waiting three weeks and still not receiving my medicine in the mail after sending in the refill forms, I called the pharmaceutical company only to be informed that they no longer carried my regular drug- now they carried the same drug with an XR attached. I immediately called my doctor’s office to obtain a new prescription with the XR added to my original prescription and sent it back out in the mail. It was another couple weeks until I got my medicine. Unfortunately, I realized that my prescription was for only once a day instead of twice like the doctor ordered. After calling the pharmaceutical company again to verify the prescription, I recalled my doctor’s office and they gave me another prescription to mail in with the correct dosage. After waiting three more weeks I called the pharmaceutical company only to be told that my second prescription had been cancelled! The reason- the pharmacy personnel failed to see that this prescription amount had been increased so they thought it was a double prescription. In defense they said that they called my doctor’s office, but like usual it was busy so they cancelled the prescription. Now I had only a week of medicine left in half of the amount of what I needed. So once again I called my doctor’s office for another written prescription. to mail in for the third time hopefully to reach me before I ran completely out. Not only have I had to suffer since I’ve been living on half the medication of what I needed, but I will now have to fill out another application, and make another visit to my doctor’s office to get another prescription to mail in. Evidently the head folk figure that I have more than enough time on my hands for making numerous phone calls, doctor visits, and filling out repetitive forms for just one medication.

Then when I didn’t get refills on my two other prescriptions after mailing in for refills and waiting a couple of weeks, I called the second pharmaceutical company and was informed that my yearly membership was up without any notification. So I quickly fill out another complete application for their company, but by the time I was able to get back in to see my long-suffering doctor for a visit, get another written renewed prescription, and send them in the mail one of my medicines had run completely out. I spent a couple of weeks in increased pain while I tried different combinations of pain pills that I had on hand to try and get my pain under control where I could function. As long as I have my meds I always take the prescribed amount of my medicine each day.

Meanwhile I juggle managing a month’s supply or three months supply depending on how much the pharmaceutical company send along with keeping all the paperwork straight. Even if I was able to work I don’t know when I’d get the time between all the phone calls, doctor visits, and filling out paperwork. Just when I think that I have everything under control, I invariably end up between a rock and a hard place in keeping enough medication on hand.

The Blank Computer Screen of Life

2010-06-11T08:22:00.000-07:00

The Blank Computer Screen of Life
Dorcas Annette Walker

I don't know if I can make sense or articulate the frustration of the struggle involved living with short term memory loss. I now have to concentrate and work harder on things that I used to do subconsciously. It’s like having to relearn stuff that you learned and accomplished during the first years of your life. You suddenly feel as though you are back in your toddler years without any warning. I mean who goes around thinking about their balance as they stand or walk during the day? Now I find myself without warning, out of the blue, getting dizzy as I walk across a room or I have to concentrate so I don’t stagger as I walk. When I stand still I had to relearn keeping my balance while talking at the same time or gesturing with my hands- something that I always do when I talk- to keep from falling over. I admit it is rather a weird sensation and it makes a person’s mind quickly become fatigued with all the extra work that my brain cells now have to perform. Walking up or down steps is definitely more of a challenge. I think wistfully back to when I used to run up and down steps without a second thought.

One of my biggest losses is not being able to sit down and play the piano like I once did. Before I played mostly subconsciously by memory “or ear” running all over the keyboard. Now I have to relearn it all over again. I sit down to play a song, but forget what my hands are supposed to do next. The harder I try to think the more frustrated I get so I will stop and leave the piano hoping for another day of clarity when my fingers will once again more effortlessly over the keys. The more I keep going back and trying the more I slowly am gaining ground.

My mind often feels like a computer screen that suddenly goes blank as I talk; lose my train of thought right in the middle of a sentence, or find myself digressing to another area without warning. I didn’t even realize what I was doing until my husband kept stopping me telling me he was all confused trying to keep up with me as I kept jumping from subject to subject without finishing one thought. At other times my mind gets so foggy that I just can’t think straight, which is really depressing. Especially for someone who used to talk all the time nonstop now having to grope for words that you know are there, but you just can’t find them.

Some days if I don’t concentrate on just one thing to do I get overwhelmed. Instead of living by lists of items to do that always kept my life organized now I will feel all the things needing to do press in on me until I feel so fatigued mentally that my brain shuts down and I can’t think straight. Or sometimes right in the middle of doing a task, I get overwhelmed and can’t continue. I’ve learned to get a book, sit down in my recliner and read to help me relax. It is during these times that I feel detached from any emotion like I’m living in a limbo somewhere losing the identity of who I am. It is as if I don’t care whether I live or die. I have to fight not to give up and give in to living like a zombie even when days pass by where I lose touch with time until I have the strength to fight and bring myself back to life and reality again.

I deal with forgetfulness daily like trying to remember if I have brushed my teeth that morning etc. Sometimes I have to concentrate on how to do my exercises that I have done for years as I will forget right in the middle of doing them. It is more the here and now versus remembering past incidents or episodes of my life. I can remember that my sister called me on the weekend and what we talked about, but will suddenly forget the next step in doing something that I have done all my life.

Also a big frustration is the fact that I don't know from day to day how my system is going to react- if I'll have enough energy to get dressed or not. I can't take it easy one day to store up energy for the next. I've tried not doing anything Fri or Sat so I could make it to church Sunday only not to be able to get out of bed Sunday morning. There is no pattern to follow. So now whenever I have any energy at all I cram everything I can do into that day wishing that the day would never end.

Well enough about me- there is nothing like chronic illness to make one become self centered, huh? And here I am just rattling on and on. I have found out that working and concentrating on a computer helps the brain cells relearn patterns. It has been a big help to me. Even though it mentally exhausts me the more I do it the easier it becomes. So every inch I gain on my road back to normalcy is worth the effort. Like they say, “no gain without pain”.

Winter Blues Turn to Spring Hope

2010-04-10T06:13:00.000-07:00

Winter Blues Turn to Spring Hope
Dorcas Annette Walker

Without hope I would not want to live. I would only exist. Hope makes life living in the shadows bearable when I want to give in to despair. And so I savor the small things that I took for granted before. I have learned to live in the moment on good days to tide me over the bad days when I am down. As the world around me bursts into a rainbow of spring colors up here in the mountains of Tennessee and the birds fill the woods around my house with songs and activity, I feel a stirring of hope deep inside once again.

Hope is:

- the belief that someday I will be normal again
- feeling the warmth of sunshine on my face warming my bones
- getting to hang wash outside once again
- experiencing new strength flowing through my body
- taking a walk in my woods with my dogs
- savoring the smiles and chatter of my toddler grandson each week
- hugs from my Nashville grandchildren on quick visits
- seeing bright red cardinals and their mates up close
- hearing birds chirping
- hanging up my hummingbird feeders
- watching the migrating birds arrive and begin building nests in my birdhouses
- feeling the warm body of my dog, Lucy Lou, curled up in my lap
- the touch of silky soft fur of my cat, Sarah Annabelle, and hearing her purr
- believing that I am gaining ground even if it is just one inch at a time
- planting a garden this year with my husband’s help
- walking through my flowerbeds to see what is growing and blooming
- planning and dreaming of things to accomplish for the future

The Sharp Edge of the Sword

2010-03-05T07:08:00.000-08:00

The Sharp Edge of the Sword
Dorcas Annette Walker

I live by the sharp edge of the sword physically, mentally and emotionally. Cold winter days of freezing temperatures or any change in the weather sets off arthritis that has taken over my body and my skeletal frame. I know that it is going to be a very rough day when I wake up crying from pain that radiates throughout my body like a fire out of control along with a sharp headache that makes me sick to my stomach. I pop extra pain pills to try and get my pain under control, but the pain draws me inward shutting out the world around me until all I can focus on is the pain consuming me while concentrating on trying to survive until the pain lets up enough for fatigue to overtake me and I can disappear into a fog of restless sleep. Once again my world has narrowed down to just me sucking out any enjoyment in life. When I visit my doctor he shakes his head over all my multiple symptoms after asking what joint hurts and I tell him it is my entire body.

I push myself to go to church Sunday as once again I have missed several Sundays leaving me feeling like a heathen. It’s so nice being back with my church family, catching up on news firsthand, and seeing all my friends again. I actually feel human once more. My pastor announces my presence and the entire congregation gives me a round of applause. Even though I appreciate the encouragement of my church family and the joy I see on their faces when they see me it will be so nice when I can once again fade into the background as a regular church attendee, but then I am always greedy wanting more. Instead I have to realize that attending worship service Sunday morning is all that I can do if I want to stay on my feet the rest of the week. Instead Monday morning I land back in my recliner feeling like I’ve been run over and left for road kill.

One big frustration is well meaning people telling me “to keep trusting God for complete healing” or “they are so thankful that now I am finally well”. I know that they mean to be encouraging, but instead I am left feeling depressed. I’m thrilled to death when I am back on my feet and “look normal” although it seems hard for folk to understand or comprehend just how much energy it takes and how exhausting it is for me to “look normal” compared to what it used to be, and that attending church and sitting upright on a padded pew invariably flares up pain in my spine that exhausts and depletes my precious store of energy. And that even though today I act like myself I will invariably pay for it tomorrow. Chronic illness unfortunately doesn’t disappear like the cold or a bout of flu. Instead one has to deal with it on a daily basis that often leaves a person feeling like a basket case of swinging emotions not knowing from one day to the next how your body will react. In fact I get mighty tired myself of always having to cope with a body that limits me, but for me I have no choice.

Reflections of the Past Year

2010-01-28T10:37:00.000-08:00

Reflections of the Past Year
Dorcas Annette Walker

I’m starting the New Year out totaling up my gains and losses to use as a gauge to see just where I am on this road of life as I live with the fallout of Lyme disease throughout my system. I shall first whine about what I still haven’t obtained- so feel free to skip the next paragraph as I wouldn’t want to cause anyone else to go into a depressive mode- and then count my achieved goals to leave you with a positive note.

Losses: I still have to spend some days in the recliner due to lack of basic energy, the loss of freedom to jump in my car and run to town on a whim, the ability to keep up with my housework on a regular schedule instead of always falling behind- right now I’m trying to ignore the sink that is overflowing with dirty dishes gnawing at my conscience like a sore tooth, not able to spend the day baking and cooking to my heart’s delight during holidays, my pitiful few goals that I still have to keep reducing in order to try and reach one single objective, not being able to get dressed and combed everyday- I continue to shuffle around in my PJ’s on a regular basis.

Gains: I am feeling stronger than last year and feel like myself most of the time- watch out world here I come!-, I appreciate the basic simple things in life that I once took for granted and try to count at least one blessing each day, I am doing a tiny itsy bit more writing and can work at my computer most days for a short span, the pride and joy of crossing off a task completed no matter how small, I’ve been able to attend church more regularly- what bliss, and have started doing some shopping on my own, I can do housecleaning nearly every week, and I have started taking walks in the woods with my dogs to help gain strength.

Overall I have gained one inch instead of the two and three that I had hoped for, but I am so very thankful for each centimeter of improvement rewarding myself like I have won the Olympics or World Series to keep my spirit and mind ever reaching forward.

Body Betrayal

2009-08-31T10:05:00.000-07:00

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

2009-05-29T07:02:00.000-07:00

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

2009-05-06T09:45:00.000-07:00

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

2009-04-09T05:15:00.000-07:00

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

2009-02-27T08:44:00.000-08:00

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

2009-01-21T08:49:00.000-08:00

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

2009-01-08T05:26:00.000-08:00

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.

One Little Froggie In A Milk Pail

2008-11-06T04:43:00.000-08:00

One Little Froggie in a Milk Pail
Dorcas Annette Walker

My life resembles the story of two frogs that jumped into milk pails. One little frog gave up and drowned. The other frog kept kicking until he churned the milk into butter and was able to hop out. I feel like a mixture of the two. Somehow, not of my doing, I’ve landed in a milk pail. Some days all I can manage to do is float and keep my head above the surface as I grasp for a solid surface to rest on. I wonder how on earth I will ever manage to get out of the milk pail with constant fatigue and pain overwhelming me. Other days I kick in rebellion not willing to let this crazy Lyme disease get the better of me. I manage to churn up particles of butter resembling tiny steps taken towards normalcy or any small goal that I’ve managed to accomplish. Every so often I find a solid lump of butter, claw my way to the top, and take inventory of where I am. I keep telling myself that all those swirls of yellow floating around me are positive proof that I have gained ground from where I was when I landed in the milk pail to start with. Even the milk looks a bit thicker. Just as I get confident to make a great leap for freedom, I slip back down into the milk. As the milk sloshes around my face I am taunted by the fact that I am still imprisoned in my milk pail of life. It’s then I’m tempted to give into despair. How much longer can I keep kicking? Churning milk into butter is lots harder than it looks, especially when you are the only one that is doing the kicking. Friends and family cheer me on. Every so often one peers down at me to ask how I am doing. I tell myself that I am not alone, even if it is just me in this cold metal milk pail. But the stark reality hits me in the face. I realize that no matter how much others want to help it really is up to me to keep kicking… keep hoping that the milk in life I’ve been given will soon turn into golden butter.

Celebrate the Small Stuff

2008-10-17T03:14:00.000-07:00

Celebrate the Small Stuff
Dorcas Annette Walker

-Today I got a shower. Once more I feel like a civilized human.
- I brushed my teeth. Joys!
- I didn’t have enough energy to get dressed, but at least I have on a new pair of PJ’s.
- I was able to check my emails that have been piling up like fallen leaves in autumn.
- After resting a bit in my recliner, I hung up a load of wash outside and breathed in the fresh air.
- Then I rocked a spell on my front porch and watched the tiny hummingbirds and Lucy Lou race madly about in the sunshine. What bliss!
- After lunch, I brushed my cats enjoying the feel of soft fur under my fingers and listened to them purr back to me.
- I filled up the bird feeders on the porch, talked to my birds, and listened to them chattering away in the trees like a bunch of gossips. My birds are so much fun to watch though the window on days when I can’t get outdoors.
- When Dana got home I was able to stroll through my neglected flowerbeds. Each bloom was a delight to see.
- It has been a wonderful day! My pain has been managed enough where I could function in a halfway normal manner again and I’ve been able to stay awake enough to enjoy the day.

Purple PJ's and Pearls

2008-08-26T08:55:00.000-07:00

Purple PJ’s and Pearls
Dorcas Annette Walker

It is Sunday and the house is silent since the guys left for church. I feel like a ghost as I wander from my recliner to the kitchen. I think of all my friends at church and wish that I was there with them. Instead I’m a prisoner of pain and fatigue. I feel depressed wishing that my life was not constantly over-shadowed by the affects of Lyme disease.

I force myself to take a shower even though it expends precious energy; the warm water smoothing aching muscles and hurting joints. I feel like I’ve joined the human race once more. I put on a set of soft lacy lavender/purple PJ’s that my sister gave me for my birthday last year. It was a perfect gift since most days consists of wearing pajamas instead of dresses. Whenever I am unable to get out to church and be with my friends on Sunday I wear my purple PJ’s.

I brush my teeth shuddering at the thought of neglected past days. I used to automatically brush my teeth twice a day. Now nights I struggle to remember if I brushed my teeth that morning or not. The haggard lady staring back at me in the mirror gives me a scare. Anger rises inside at what I have become. I’m tired of dragged around like a pale shadow. I start working on my face plucking stray eyebrow hairs and camouflaging the dark circles under my eyes until I see a resemblance of myself in the mirror. I glance at my watch. It is almost noon. Where has the time gone?

I push myself to brush out hair that hasn’t been combed in three days cringing at the sweaty feel of hair needing to be washed. Then the irony strikes me. I’m the girl who used to fix my long dark hair often times twice a day while traveling with my husband going to church night after night from state to state. I always prided myself on being put together. I took for granted the compliments I received of being told that I always had every hair in place and looked so well groomed. I loved to dress with a bit of pizzazz matching shoes and pocketbooks to flowery hats. Now I can’t keep my hair brushed out daily. I fix the front pulling my hair back into a fancy silver barrette. Then I braid the back and tie the braid up in a lavender scrunchy. I put on my Sunday watch and the strand of pearls my sister gave me. My body feels like I’ve put in a hard day’s work. As I rest in my recliner I feel elegant even though I’m only dressed in my lavender PJ’s.

One Normal Day

2008-08-14T06:57:00.000-07:00

One Normal Day
Dorcas Annette Walker

The other Sunday I had one day of being myself- something that hasn’t happened for months. Once I got up and took my pain meds my bones and joints didn’t bother me like usual. I put a roast in the crock pot, ironed a dress to wear, and then got ready for church. I had to keep telling myself to slow down as I felt energy surging through my body. I was afraid it would suddenly leave like it has all too often before. It felt strange to feel strong after dragging around for so long.

Excitement welled up inside me on the drive to church. After not being away from the house for a couple of weeks, my eyes drank in familiar sights. I felt as though I had come back home from being away on a long journey. The world looked brand new. I savored the sight of each tree and flower reveling in familiar landscapes that I had forgot.

When I walked my feet wanted to skip and dance, but I restrained myself as any quick movement threw me off balance, settling instead to walk sedately on my own without having to lean on my husband’s arm for support. It was an invigorating to feel independent again instead of being reduced to the helpless clinging-vine of a woman I had become. I realized that I felt no pain. It was actually scary. Had some kind of miracle happened?

All my senses were alive. Instead of the shell of my body being at church with the real me looking on from the shadows while trying to focus through pain, I now could take in every detail without concentrating until becoming exhausted. I sang in the choir feeling once more a part of my home church and not some visitor. Even though the possibility of collapsing when I got back home hovered in the back of my mind it didn’t dim the joy of being with all my friends, who have supported me faithfully in prayer for so long. What a rejoicing and hugging time we had being together again.

Back home I set the dining room table, served the meal, and then washed up the dishes like I always had in the past. While my guys laid down for an afternoon nap, I walked outside soaking in the beauty of the warm summer day. My flowers reached out to welcome me as I mentally made note of all the things that needed to be done. I wished I could grab my trowel and wade in to restore my neglected flower beds back to their former glory, but I restrained myself. I sat on the front porch, answered some letters, and puttered around like I used to do before Lyme disease took over my life. I wanted to pinch myself to make sure that I wasn’t dreaming.

The hours flew by swiftly… all too fast. I wanted to grab time and stop it. I chatted with my sister on the phone. She sounded so happy that I was having such a good day. Then still feeling like myself, I went to church that evening to hear Dana preach. It had been months since I last heard him preach, much less got out in the evening. Usually by nighttime I am always exhausted and drag around. The regular organist was absent so I played the organ - a huge step of faith as you need a clear mind. I’ve tried different times to play the piano at the house to stay in practice, but often have to quit because it takes so much concentration that I quickly become exhausted and fatigued. My fingers flew over the keys like before and it was a wonderful to feel the music flowing out from my finger tips. I played along for the specials songs, even though I hadn’t practiced, instinctively hitting the right notes like I used to do when playing by ear. The church folk were so excited to see me again that night.

We came back home, I changed into my PJ’s, and then Dana and I relaxed and watched a DVD. He was amazed that I was still up, going, and feeling okay. All too soon it was bedtime. Even though I was feeling tired, it wasn’t the draining exhaustion like usual. I reluctantly crawled into bed not wanting the day to end. I fell asleep with a smile on my face and slept soundly until I woke up once again in pain. Even though I’ve been back in bed again and have had to struggle through rough days of chronic pain the memory of my one normal day helps to sustain me. I will always treasure the unexpected gift that I was given.

The Other Body

2008-06-26T06:24:00.000-07:00

The Other Body
Dorcas Annette Walker

I wake up and turn to jump out of bed like usual, but my body refuses to move. I have to concentrate to move my arm and finally painfully slowly roll over. It takes me a couple of tries until I can sit up. The effort leaves me trembling. What has happened to me? This isn’t my body. I feel like I weight 400 pounds instead of my usual 135. Whose body did I wake up in?

When I finally drag myself to the bathroom I see a stranger in the mirror; someone haggard with dark circles under their eyes and hair that has been neglected. Surely it can’t be me! I search for some sign of recognition of myself, but I seem to have disappeared. My shoulder’s slump in despair and I stagger back to bed. I painfully crawl back under the covers. All I want to do is disappear in sleep, blot out this life, and someway find myself again.

I hate this person who is clumsy, drops stuff, and stumbles around having to hold onto the walls for balance. I find it hard to complete simple tasks like getting dressed or brushing my teeth; stuff that I used to do automatically. Now it drains what little energy I have.

I can’t focus enough to talk in complete sentences. I have to concentrate not to mumble or slur my words. My husband teases me that I sound like I am drunk. I start to ask a question and then forget what I was asking. It is like the computer screen of my mind keeps going blank and I have to scroll up and down my memory searching for the right word. It feels like my brain has crashed on me. I try not to panic. What if I my brain suddenly decides to shut down completely? This thought lurking at the back of my mind haunts me.

The Night Owl

2008-06-18T07:26:00.000-07:00

The Night Owl
Dorcas Annette Walker

The rest of the world is sleeping as I slowly ease my body down in the recliner to try and lessen my level of pain. All is silent except for the sound of my husband snoring in the next room. Even Lucy Lou, my faithful companion, is curled up at my feet sleeping leaving me totally alone in the dim darkness. I turn on the lamp beside me and try to read to divert my mind, hoping that my pain lowers enough so I can lie back down in bed and relax enough to fall asleep. Time seems to drag. The page blurs in front of me. I blink my eyes and try to focus while ignoring the nagging pain radiating throughout my body. My head falls over jerking me awake from a semi-doze. My entire body is begging for relief that sleep will give if only I can get to that state.

I have a choice. Take a pain narcotic and get enough relief to fall asleep, but leave me the next day feeling dopey and dizzy with my balance affected or try and trick my body into relaxing enough to fall asleep and then feel like myself the next day. If only my crazy bones would cooperate and let the pain lessen just a slight bit I could control my life without another pill. My fogged mind argues back and forth. To pop a pill or not to pop a pill- that is the question of my life.

Life from a Prescription Bottle

2008-05-21T18:07:00.000-07:00

Life from a Prescription Bottle
Dorcas Annette Walker

I never used to be one to take pills for an ache or pain. In fact growing up pills scared me as I often would choke trying to get one down. I can remember my mother arguing with me to try and get me to take something for relief for a headache- I would rather suffer it out than to face swallowing a pill. As a teenager I had low iron levels so I got used to taking the small iron pills. When I was expecting the large prenatal pills were a nightmare until I discovered that breaking them in two and putting them in a spoonful of applesauce made the pills easier to swallow. After the birth of my daughter I hemorrhaged badly and was underweight so finally consigned myself to taking a daily multivitamin with the faithful iron pill to keep me going. When I got my first tick bite that triggered Lyme I swallowed the antibiotic pills- anything to get back to normal.

Then pain started flaring up that ibuprofen no longer controlled. My doctor had me take Advil. Soon that wasn’t keeping my pain under control, so he added Celebrex and then Neurontin. My dosage kept getting increased until I was bedfast. Once I realized that Lyme’s had come out of remission, I was put on a daily regiment of antibiotic pills that lasted nine months. The only way I could tolerate taking the antibiotic pills was to take them at night as they make you wretchedly sick, despite popping Phenergan. Pain pills tend to destroy your stomach lining so my meals are eaten with a handful of pills. Shopping trips on good days or visiting with my daughter and grandkids has to revolve around remembering to take my pills so that the level controlling my pain will not bottom out. From past experience (of landing back in bed due to intense pain) whenever I go out I grab my pills in case we run late. I live with chronic pain. Unfortunately the narcotic to keep severe pain under control makes you feel sleepy and drugged. Some days I dither back and forth whether to choose a pain pill or try and ignore the pain so I will have a clear mind.

Pills have a way of multiplying and overtaking your life- you daren’t think about all the side affects or you’d go crazy. Popping pills is a love hate relationship. I hate the fact that my life is tied to yucky orange-tinted bottles decorated with strips of paper for dosage, directions, number of refills, narrow labels for warnings all topped by a white cap. I feel vulnerable realizing that my life is controlled by pills. Yet I gladly swallow them down every day in order to be able to stay on my feet and partially enjoy a normal life. And when I start to feel independent all it takes is a shifting of my pain to a high level to find myself heading back to the mini pharmacy in my kitchen cabinet and reaching for a bottle of pills. Speaking of which, I have to bring this to a close. It is time for me to go and pop some more pills.

The Neglected Wardrobe

2008-05-15T06:29:00.000-07:00

The Neglected Wardrobe
Dorcas Annette Walker

I hold onto the sides of my closet to keep my balance and stare at the rows of clothes hanging inside my closet. Bright colors draw my attention as my eyes roam up and down the coordinated colors ranging from light to dark. I reach out and touch a silky fabric yearning to feel it against my skin. How long has it been since I wore a dress? I touch another sleeve and then another as the rainbow of greens, purples, then pinks all call out, pick me! I feel dizzy and overwhelmed with all the choices to choose from. What should I wear? Feeling refreshed after taking a shower I want to get dressed instead of wearing pajamas. I reach out for a blouse and skirt then place it back on the rod, then another. I feel exhausted at the thought of having to iron an outfit. I close my eyes to concentrate. What would be quick to iron or is there something I could wear without ironing that wouldn’t look wrinkled? Instead of all the colors cheering me up, I feel depressed. Will I ever be able to get dressed like I used to? Before Lyme’s I had no clue how much energy it took to pick out an outfit, iron it, and put it on. Now taking a shower depletes my stamina and the thought of trying to pick out a dress among the many choices saps what little energy I have. Slowly I turn and walk away. By the time I put on a pair of comfy pajamas and sit down in my recliner I am trembling with the exertion expanded. At least today I don’t have to lie in bed and stare at dresses that tantalize me with their bright colors.

What dress shall I wear today? I’ve tried to work through my pain determined to go to church this Sunday morning, but finally have to admit defeat. My pain level is too high to endure traveling and sitting. I even ironed a dressy outfit to wear that I haven’t worn in over a year. Now that I have to stay at home I have no desire to wear the ironed dress waiting for me. It will only remind me of what I am missing. So should I choose another outfit to pick up my spirits or simply grab something out of the closet that I wear for everyday? I run my hand down the line of bright print dresses each one a memory of fun times before Lyme’s invaded my life. Dresses that send clues about the kind of person I am; my individuality. The choice is too overwhelming. I need to lie down. As I turn to leave my eyes catch sight of sandals all lined in boxes to match my outfits. When was the last time I wore shoes? I can’t even remember. What has Lyme’s reduced me too? I am no longer the person I used to be. I close my closet doors to shut out the memories.

Life On The Farm

2008-05-07T06:42:00.000-07:00

Life On The Farm
Dorcas Annette Walker

Yesterday was a slow day for me, but I was able to get dressed and comb my hair by afternoon- what bliss. I felt civilized at last! I was battling to stay awake with no energy. The rainy chilly day outside matched my mood so I sat in my recliner by the fire and crocheted. Dwight left Sun afternoon to go down to Nashville to stay with his sister and will be coming home Thurs. Eloise (my rabbit foot cat) that usually stays in Dwight's room must have been feeling lonely. I ended up with Eloise stretched out on the top of the recliner at my head, Annabelle (my long hair calico) curled up in my lap purring, while Lucy Lou snoozed at my feet as I crocheted. I almost felt guilty for enjoying it so much. There have been some weeks when it is all I've been able to do to get my newspaper assignments in for my cooking column, Creative Mountain Cookin. Each time I push the button to send in another article and photo, I breathe a sigh of relief and collapse for the rest of the day. I'm always afraid that one week I won't be able to make the deadline. If nothing else it has helped raise my confidence pushing myself beyond what I think I can do and keep my brain cells active. I have learned to work and do stuff while in pain (thankfully there are levels of pain) as long as my pain level stays under a certain point because if I waited until I didn't hurt I'd never do anything. Chronic pain has taught me to stay angry enough to push myself. I refuse to give up! Other days when my pain level is high or I can't stay awake, I go into a zombie mode where I'm in bed and I mentally shut down to survive another day. When my pain level is lower I ignore it the best I can and do what I am able to do- some days are more than others. For each task I accomplish (like get dressed or comb my hair) I mentally act like it is a great achievement to help spur me onward. My biggest frustration is not becoming overwhelmed on the days when I can do a few things as by then my list of stuff to do is staggering.

I have determined this year to find something each day to enjoy no matter how small. Every day that I can I go outside (even if I have to bundle up in my PJ's) for a little bit as it helps clear my mind just to get out of the house. Hopefully it will also build up my strength. I can’t believe how weak I am. On days when I am unable to go outside I sit in my rocker in the sunroom and watch the birds. One day I saw six brilliant red cardinals sitting in my trees surrounding my sunroom while their mates took a turn at my bird feeders. It was awesome! I love (and my cats do too) watching the birds at my feeders. I have managed to keep my feeders filled on the back porch. Dana built an incubator and there are four brown eggs incubating on my table in the sun room. Since the weather dips up and down we have to keep changing the light bulbs to keep the temperature at the right level. Talk about mental stimulation! When Dana is gone Sunday’s preaching, guess who gets to baby-sit his incubating eggs and gather the eggs from the chickens? I got five eggs Sunday- the highest number of eggs yet.

A Tank Half Full of Gas

2008-05-02T05:21:00.000-07:00

A Tank Half Full of Gas
Dorcas Annette Walker

Little did I realize that one day my life would end up resembling my neglected car sitting in the driveway. In the past when I drove my car I was always made sure that I had a full tank of gas. As soon as the gas gauge would show half empty I’d stop and fill it back up. I’ve always had a secret fear of being stranded alongside the road with an empty gas tank. Now each day when I wake up I wonder just how far I will make it through the day. Some days after my pain pills kick in I manage to get dressed by dinnertime, only to discover that my energy has run out. The rest of the day has to be spent in my recliner or back in bed. More times than I care to remember, by the time I get up, pop my pills, and eat breakfast I am physically drained as though finishing a day of hard work that leaves me no option but to stagger back to bed totally exhausted like a car with an empty gas tank.

A good day consists of being able to keep going (between numerous breaks) all through the day and cook a simple supper instead of lying around. If I’m lucky to still be up on my feet by supper time, my energy level starts dropping very fast. Sometimes after cooking supper I’ll be so exhausted I have to rest in the recliner before I can eat. Despite my fluctuating energy levels, I refuse to give up and stay in bed as long as I can make my body move. I keep making lists (that keep growing) of things that need to be done. Each day I have to guess how much energy I will have without any gauge to register my energy level. It’s kinda like driving a car with no gas gauge. I start a task hoping that my energy will not suddenly drop without warning. When that happens I barely am able to make it back to bed before collapsing.

There is nothing like living with the uncertainty of one’s strength to undermine your self confidence, especially when day after day you are not able to do simple tasks that you once did automatically. Do you have any idea how much energy it takes to get a shower, dress yourself, brush your teeth, or comb your hair? I now have the energy levels for each task down to a fine science. I feel kin to the senior residents that shuffle down nursing home hallways- folks that I used to pity. Now I am one of them as I concentrate to keep my balance making a conscious effort not to stagger or limp when I walk. At times the energy it expands is simply too much. So I face each day wondering if my energy tank will be half full or half empty.

I Propose, But My Bones Dispose

2008-04-24T10:51:00.000-07:00

I Propose, But My Bones Dispose
Dorcas Annette Walker

3 AM: Saturday night I shift restlessly in bed as pain keeps pulling me awake interrupting my sleep. My pain increases enough that I come out of the fog to realize that I need to get up and take more pain medication. I fumble in the darkness for the button light on the clock beside my bed as pain shoots through my body and groan when I see that it is only 3 o’clock in the morning. Not another night of interrupted sleep! My bones scream in protest as I stand, fight for balance, and slowly walk out to the kitchen to warm up some hot chocolate in the microwave to take with my pain medication. Every move I make increases my pain level. After popping a pain pill I concentrate on not spilling the hot chocolate as I stagger across the living room to my recliner and turn on a lamp. Sweat pops out on my forehead and I feel like I’m going to collapse any second. I grit my teeth and slowly settle myself down in the recliner as more pain shoots through my body. I gasp for air and try to slow down my breathing. My hand automatically reaches downward for a magazine in the basket beside my recliner. It will take a half an hour at least for me to feel any relief. Hopefully the colorful pictures or a short article will distract my mind until the pain pill kicks in. Lucy Lou sighs and settles down at my feet. I echo her sigh. Maybe I’ll be able to get enough rest to make it to church this Sunday later on in the morning. I miss seeing my friends and hate the isolation of being forced to stay at home due to pain. After an hour I start to feel a bit groggy. Hopefully a little bit longer my body will relax enough so I can go back to sleep. Two hours later I ease back in bed and let sleep overtake me once more.

7 AM: I can barely focus on my husband’s voice through the sharp pain that hits me as I come back to consciousness. He is asking me if I’m going to be able to go to church. I cry out in pain and turn my head shutting my eyes. Pain surges through my entire body like a raging fire and I grip my teeth to keep from screaming. Try to relax! I order my body as it tenses up under another onslaught of pain. Relax and go back to sleep! I chant over and over inside my head as I feel myself slowly sink back down.

10 AM: When I wake up again it is after 10 o’clock. I won’t be making it to church this Sunday. I blink away tears. Once again my life is interrupted due to pain. I feel depressed seeing the sunshine and beautiful day outside my window. The window stands like a barrier between isolation and normalcy. Too many times I’ve been trapped inside when I want to be out like everyone else. I take more pills and eat a bowl of oatmeal with fruit. I can hardly stay awake to finish my breakfast and gratefully crawl back in bed not waking up until my husband and son come home for lunch.

3 PM: That afternoon still in my PJ’s I try to read in the recliner fighting a strong urge to sleep. I want to stay awake and not miss the entire day. I’ve missed too many days already out of my life. My body will not cooperate and I find myself dozing off and on. I finally give in and stagger back to bed. My life has become reduced to sleeping, waking up, popping pills, eating, and sleeping again. I wake up around suppertime. The house is silent again. My husband and son are back at church and I am alone. I take more pain medication and scrounge around in the refrigerator for leftovers. I manage to stay awake reading a magazine in the recliner until my husband and son comes home from church.

9 PM: I can no longer stay awake so I head back to bed feeling totally wrung out and exhausted as if I have put in a hard day’s work. I drop into a sound sleep and don’t know anything until the next morning.

The next day my pain is under control, but I feel angry and depressed. I’ve missed another day in my life. Why God? Why couldn’t my bones behave and let me be normal again? I didn’t even get to enjoy the sunshine and take a walk outside yesterday. When will I gain back control of my life? I don’t want to spend the rest of my days staggering around trying to stay awake, living in my recliner, and fighting pain. There is so much I yearn to do: writing, painting, working on crafts, sew a quilt square for the church quilt, feed the birds, work in my flower gardens, clean my house, catch up on the wash, not to mention the pile of dirty dishes in the sink…

Beside Still Waters

2008-04-10T05:40:00.000-07:00

Beside Still Waters
Dorcas Annette Walker

I groan and roll over as my body protests. Not another day in bed! I shut my eyes in frustration. Will I ever be normal again? Even my doctor isn’t exactly sure what is going on. I went from being an active person to an invalid seemingly overnight. Why God why? Then a verse from the Psalms comes to my mind. He maketh me to lie down in green pastures; He leadeth me beside the still waters. Psalms 23:2 Life certainly has become still now-a-days compared to the hectic pace I used to keep up with before.

First I was diagnosed with fibromyalgia. Maybe my past history of rheumatoid arthritis caused the flare-up. Who knows. All the tests from a stay in the hospital came back normal despite constant headaches, fatigue, and increasing bone pain. I started tracking each day looking for patterns in weather, stress, anything that would give me a clue why I’d wake up with pain radiating throughout my body that exhausted me until I was unable to get out of bed. The constant headaches grew worse as my pain intensified, whick increased pain meds barely affected. Some days I can’t wake up enough to function. Other times the fog in my mind is so severe I was unable to concentrate leaving me feeling confused and scared. I have to hang on the walls to keep my balance. My doctor ordered more tests done as numbness spread to my hands and feet causing me to trip and fall when I try to walk. I started using a walker. I went to a rheumatologist and neurologist. I only got worse. One night the pain in my head intensified to such a degree that I couldn’t sleep. My husband rushed me to the emergency room. I passed out and had mild seizures. A CT scan was done, but everything came back normal. I was put on migraine medication, which only helped for a couple of weeks then was useless. My doctor shook his head in frustration as my symptoms kept increasing.

I don’t have enough energy to get dressed. My goal for a day consists of trying to take a shower or brushing my teeth. I had to give up my kid’s class at the local church where my husband pastored. I couldn’t lead the choir or play the organ. Next I resigned my position as the missionary leader. Instead of doing visitation with my husband, people now brought food to the parsonage. Deep inside I know that God has a purpose in everything that happens, but it is hard to focus on the positive as days dragged by and I was in bed more than up. I feel guilty seeing my husband trying to cope with the unfamiliar territory of housework, cooking, and washing clothes. I try to pray when my mind is clear enough. I remind the Lord how useful I could be if only He would heal my body. Before I had always been an active person that kept going no matter how sick I felt. Now my body refuses to respond to my demands. I feel depressed and useless. On days of intense pain I pop pain meds that put me under only to wake back up in severe pain.

My blood work never showed the presence of Lyme’s disease from tick bites that years before antibiotics had knocked out of my system. Desperate I called a Lyme’s specialist. As soon as I began describing my symptoms I was told that my Lyme’s had come back out of remission. I was in the third stage needing to get on antibiotics immediately. My local doctor agreed to start me on antibiotics to see if it would help. Within a week’s time I began to feel like myself again and the headaches were not as severe. I was hoping by a month’s time I’d be back on my feet again, but I am still bedfast. When will I be normal again? When can I get up for good?

It reminds me of when I was a child and my mother would put us kids down for an afternoon nap. Often I was full of energy and didn’t want to lie still. After what would seem like hours I’d call for my mother. Isn’t it time to get up? My mother would say, “Lay back down, Dorcas. It isn’t time to get up yet. I’ll tell you when you can get up.” It would seem forever until she would say, “You can get up now.” My heavenly Father knows best how long I need to rest quietly beside the still waters. So I’ll try to be patient a bit longer. When I get discouraged He sends me signs of His love. A phone call from a friend to tell me that they are praying for me, a get well card in the mail, even the chirping birds outside my window remind me that God is in control. He has a plan for my life. I can trust Him. I finally get my aching body comfortable and close my eyes. I will not fight the overwhelming fatigue but rest. Maybe tomorrow I will be able to be back up on my feet again. Meanwhile I’m not alone. Beside me a furry, fat cat is purring.

The Bag Lady

2008-04-06T08:06:00.000-07:00

The Bag Lady
Dorcas Annette Walker

Who the stranger in my mirror staring back at me? She looks pale and wan. It can’t be me. Those pain-dulled eyes ringed with dark circles are not mine. My cheeks are always rosy and my eyes sparkle with life and laughter. And her greasy hair. Horrors! My hair is always combed and neat. I search in vain for my face. Have I totally disappeared? I recognize familiar features, but this stranger looks older than me. Where did I go? This person stinks. I shudder trying to remember just how long it has been since I had a shower. I am shocked to see stains on my pajamas. How did they get there? My finger and toe nails need to be trimmed. How could I have let myself go? I look like one of the homeless people on the street that I used to pity. My body needs a major overhaul. At what point did I give up? When did the simple act of brushing my teeth become too much of a burden to do? I step in the shower and begin scrubbing my body reveling in the feel of warm water as pulsates over tense muscles washing away the signs of neglect. When I am dry I have to sit down so I can catch my breath. I still have to trim my nails, wash my hair, and hopefully get dressed. I won’t stop until I am civilized from head to toe, even if it takes all day. That evening I relax in my recliner feeling like myself. I promise that I will never let myself get like that again.

A week later: I glance in the mirror and see the bag lady again. No! Go away! I hate you! Get out of my life! I turn my head away from the haunting image in my mirror. Despair overwhelms me as I hang onto the sink trying to keep my balance. Pain escalates and I stagger back to bed. It takes all my energy trying to survive in my world of pain. The bag lady will have to wait.

It's a Dog's LIfe

2008-04-02T05:37:00.000-07:00

It’s a Dog’s Life
Dorcas Annette Walker

Did I really think that life was normal again? Who was I kidding?
Outside my window a beautiful autumn morning mocks me as I lie in bed. I yearn to feel warm sunshine on my face as I work in my neglected flowerbeds or smell the scent of clean wash hanging on the clothesline. Not spending the day stuck in bed. I fight back tears of frustration. I need to be in my kitchen making potato salad for the fish fry tonight at my home church that I’ve looked forward to with so much anticipation for a month. Instead I’m battling a headache and trying to get my bone pain under control. Lucy Lou, my mixed poodle, lies beside me. As if sensing my distress she licks my hand in sympathy. Maybe if I stay in bed for a couple of hours I can make a dessert for tonight instead of fixing potato salad. Chronic fatigue threatens to overwhelm me. I prop my body up with pillows so I can read a book to help keep me awake. I turn a couple pages trying to concentrate. The words blur before my eyes and I feel my body sag sideways. The next thing I know I’m struggling to wake up. Lucy Lou is on her back beside me snoring. A glance at the clock tells me it is past lunch time. I stagger out of bed hanging onto anything handy to help me to stay upright. By the time I fix a yogurt shake, take another pill, and convince Lucy Lou to come back inside I am exhausted. Lucy Lou sits beside me hoping for a tidbit as I drink my lunch and try to read. For some reason every time I eat my dog thinks she needs to share my food. When I ignore her, Lucy Lou flops down and begins chewing on her rawhide bone. My eyes feel heavy and it becomes too much of an effort to read so I let my body roll over and close my eyes in relief. The next thing I know my husband, Dana, is calling my name. He has come home from work. I force myself awake. He assures me that there will be plenty of food. All I need to do is get dressed. I slowly get out of bed hanging onto the side of my dresser bureau trying to get my balance. I feel dizzy, disoriented, and every bone in my body hurts with each step that I take. Lucy Lou runs around me in circles oozing boundless energy that makes me jealous. When I barely make it to the bathroom without falling I realize that I won’t be going anywhere. It is a relief just to get back in bed. My husband and son, Dwight, leave for the fish fry promising to bring me back a piece of catfish. The house once again is silent. I turn on my side trying to lesson the nagging pain in my spine. Outside my window the world has turned to twilight. Lucy Lou flops down beside me and heaves a big sigh. I reach over and pat her silky ears. I know, sweetheart, it’s a dog’s life, huh?

Lyme Light

2008-03-31T06:56:00.000-07:00

Lyme Light
Dorcas Annette Walker

I’d like to shed some light on Lyme’s disease, which has become a debatable subject in the medical field. I don’t have any doctorate behind my name. I’m just a patient that lives with an incurable disease. It all started with a tick bite- something I thought at the time insignificant. Now I’m in the third stage battling to get this disease back into remission before it attacks my vital organs. You can read about how it all started at: www.dorcasannettewalker.com. I want to give the disease of Lyme a human face, a voice, to raise awareness of a silent epidemic that changes a person’s entire world. I need a listening ear as I vent my frustrations on my journey back to normal and relight the spark to once again believe that my life will count for something. It seems incredible that a tiny tick could cause so much havoc- reducing my busy lifestyle where I had everything neatly compartmentalized into struggling day by day to function normally. I’ve stumbled into a twilight zone where one is dependent on pills to exist. I struggle amidst the fog in my brain to find a door, an exit, to where life is normal. I yearn to join the mass of humanity that races past me just out of reach. My spirit rebels at living on the sideline with a body that refuses to cooperate. There has to be a light somewhere that will lead me out of this confusion into freedom. So I’ll keep searching, reaching to find the key to unlock my prison.