As Misty's World Turns


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June 2, 1998

There comes a time in everyone's life when opportunities come along, and decisions must be made. Sometimes the opportunites are good ones, sometimes they aren't. Likewise, the decisions that we have to make can be both as well. Sometimes these decisions can be two part, easy to make, and difficult, all at the same time.

It's funny, just when you think you have life figured out, something comes along to change your perception. I've always known that there were a select few that knew me very well. What I didn't know was that there was someone very close to me, someone I see all the time, that knows me better than I had ever guessed.

Yesterday was one of those days that becomes a turning point in your life. Just when I thought I had things figured out, everything changed. I spent what turned out to be one of the nicest days with my Mother that I can remember. For the first time in years, we really spoke to each other. We talked about things we've never spoken of before. She knew certain things about me that I would never have guessed.

By the end of the day I felt both relieved and excited. Relieved to know that she saw something in me that I never thought she would see. And releived to know that I no longer had to feel like an outsider with her. Here was someone who knew me better than I might even know my ownself.

It seems like the pendulum has swung the other way now. My life has taken a different turn, and I'm headed in a different direction now. There are few things that I am certain of, but what I do know is I not only have 3 people who understand me and love me, I have 4. I also know now that from this point on everything will be new and exciting, and I'm eager to get my life going again.

June 4, 1998

I've spent the majority of my day in bed sleeping. For too long I've stayed up later at night than I should, and the stresses of my days have been taking their toll on me. There comes a time for everyone when they just need to shut down, regroup, and get the rest they need.

I find myself split these days between a feeling of failure and elation. Kind of a strange combination, and one that only I would do. (lol) Failure, for not being what I had hoped I would be at this point in my life. Elation, when I think of all the possibilities that lie ahead of me in my life.

I once read somewhere that.."you can overcome anything that life throws at you if you are prepared". I often wonder what kind of preparation this involves. I guess this involves the feeling of not being alone and knowing that someone walks beside you. Whether that person walks next to you, or with you, is of no importance. What matters most is the knowledge that we are loved and not alone in this life.

I remember thinking as a little girl that no matter what happened, my daddy would not let anything happen to me. As I grew into an adult I still had these feelings. Although my Father had been ill for many years at that point, and there were few things he could have actually done for me, I still didn't feel alone. I knew deep down in my heart that I would be taken care of. When he died, and was taken away from me, I felt utterly alone in this world. I knew that I had the love and support of my Mother and my siblings, but this disn't seem to fill the void that had taken hold of my heart.

Over the years many people have crossed my path in life. Many friends have offered me their love, their support, and their understanding. But deep down inside me I've still felt the void left by my Father's death. There have been some that have been able to fill that void temporarily, but none that have filled it completely. None that is, until I met a very special person. Through him I was able to fill that void at last.

I have a friend that calls me "angel". I still have to laugh when I think of anyone calling me an angel. So do many of my friends and family members. I once asked this friend why he would call me such a thing. His response was this. I had come into his life when he needed someone. I made him feel loved and cared for, and I also gave him a reason to wake in the morning. It made me sit back and think. I think we all need an angel in our lives. Someone to watch over us, care for us, be there when we need someone special, and someone to love us unconditionally. How happy I am to have my own little angel on earth.

June 5, 1998

It seems that lately I have spent my days and nights in deep thought. Thinking about my life, my choices, and my future. I've never been the type of person to spend more than a few minutes thinking about that sort of thing. It seems the more I ponder it, the scarier it seems to be.

Life is full of uncertainties. One small step in the wrong direction can affect the rest of your life. When I think back on the decisions I've made, most of them weren't very wise. I'm almost afraid to make a decision, given my track record. Many years ago I made a choice that affected the rest of my life....getting married. Looking back now, I realize I made that choice for all the wrong reasons.

Most people spend all their lives wishing, hoping, and dreaming. I've always been a realist. I beleive we are the makers of our own destiny. If something in our life makes us unhappy, it is up to us to change that. I beleive that life is too short, and too precious to just squander it away being unhappy. The uncertainty of change is what traps most people in an unhappy life. It's almost like the people you read about, who are afraid to leave their homes. They are trapped within their four walls, afraid to venture out of their home. What kind of a life can that be? Personally, I'd rather take the risk, than to spend the rest of my life always wondering..."what if?"

June 8, 1998

It's amazing how much we take security for granted. Whether it be in our personal lives, or our professional lives, we all need a sense of security. To feel loved and secure is what most of us strive for each day of our lives. Many times we are lulled into a false sense of security. Thinking that all our lives we've had that feeling we've craved, until one moment comes along and we are changed forever.

I used to feel secure in the knowledge that I was able to do whatever I put my mind to. Although I still can to some extent, alot has changed for me since I aquired FMS & CFIDS. I now spend my life dependant upon others for the basic things in life. A year ago come this Spetember, I started my quest for financial independence. I did this by applying for Social Security Disabilty. I found it strange that many people had already assumed I had SSD.

It's been a long, grueling, humiliating experience. One I wouldn't wish upon my most fervent enemy. I knew this wasn't going to be a day in the park when I started this quest. I just had no idea how low they could make a person feel. I've been through phone interviews, applied for and received mountains of paperwork, and been denied disability once. I then applied for an appeal, and as of last Saturday, my appeal was denied again.

Although my attorney had warned me not to get too hopeful, it still came as a great shock to me. I sat here dumbfounded, looking at the sheaf of papers that made up my denial. Those who know me well knew how I felt and were there to lend their support. Those who should know me, weren't there for me. I'm not sure what hurt more.

So tomorrow I call my lawyer and tell him my fate. Then the final round in this battle begins...getting a hearing scheduled, and showing up before a judge. This is what I have dreaded the most. Appearing before a judge and having to beg for something that is mine. I'm not asking for a handout here, all I'm asking for is money that was paid into a fund by me, for disabled people to live on. When you can no longer walk, use your arms, sit for any period of time, and have little to no concentration skills left, how are you considered able to work?

June 11, 1998

I spent a good portion of my morning thinking about my youngest niece Meredith. She was to undergo surgery early this morning for a cyst in her thyroid. Since Meredith is only 6 years old, I was concerned about her. I was able to speak to my sister-in-law around 2 pm and was told that Meredith made out quite well. Hopefully the cyst will prove to be benign, and all will be well.

Since I am unable to have children, my nieces and nephews are extra special to me. Although I don't begin to see them as often as I'd like to, it doesn't diminish my love for them. When one of them is hurting, I'm hurting. Right now my thoughts and prayers are with my brother, his wife, and the kids.

I often find at times like this my mind begins to wander, and I become a "dreamer" for a little while. Dreaming of a "perfect" world where I'm surrounded by my children, a man that loves me more than life itself, and good health and happiness. Money, or the lack of it isn't important to me. Afterall, money doesn't make you happy when it comes right down to it. It's the special, irreplaceable things in life that make you happy. You can't put a price tag on having children, or being in love, or being healthy. These are all things that money can't buy.

June 12, 1998

I've spent alot of time on the telephone the last 24 hours checking up on my niece. I'm happy to say that she is home, and doing pretty well. She phoned me tonight and although she sounded quite hoarse, her spirits sounded higher. I told her how very proud of her I was. It's not many 6 yr olds that would go through this type of surgery without shedding a few tears.

I also received the paperwork on my request for a formal hearing for my SSD. It seems when the government doesn't know what else to do, they throw papers at you. I've signed so many different papers in the last 9 months that I'm totally lost at this point. Today I only had 4 papers to sign, and one to fill out, but I still had to stop and rest my hands before I could continue. A form that was "supposed" to take 15 mins to fill out, took me half an hour. I'm not able to write very much. If I've been pushing myself in the wheelchair, like today, I'm barely able to hold a pen, much less write.

I was responding to a letter from my friend Carol the other day. She has just begun the SSD process and we were talking about how rediculous this whole process was. I'd said to her the one thing we can be thankfull for is that prositution is illegal in most states of the USA. For if it weren't, I'm quite sure the Social Security Admin. would say..."well, you are able to lie on your back. Therefore you should be prostituing yourself!" Maybe I shouldn't say that, "Big Brother" may be reading this and getting ideas!! (lol)

June 18, 1998

Looking out the window at the cloudless sky, the breeze gently blowing, and the sun shining ever so brightly, you'd think it was perfect outside. It is not. It is a typical summer day in South Carolina. Very hot, and very, very humid. The gentle breeze that looks so cool and comforting viewed from indoors, feels like a giant blow dryer when felt outdoors. Although I would love to be outdoors instead of trapped inside in the air conditioning, I just can't. Just the short time it took for Jack to pee earlier was enough to make me feel like a snow cone in hell.

It's been a long time since I've entered anything in my journal. Today I felt the need to write. There are so many needs I don't have fulfilled. The need to be myself, the need to be loved and understood, the need for compassion and caring. The list goes on and on. We all need these basic things from life. Some of us get them from family members, some of us from friends, and some from both places.

For too long I have lived a life that was expected of me. Always doing the right thing at the right time. Looking out for other people, caring for them and helping them. All this without ever thinking of my needs, what I want...or wanted from life. I've been told that I need to concentrate more on what makes me happy, rather than getting my happiness from others. This is so true. I firmly believe that we are all responsible for our own actions in this life. We can not sit back and blame others for our misfortunes. Nor can we expect other people to make us happy and healthy.

Only you, and you alone have the power to change your life. It may be something as simple as deciding to color your hair in the shade you see fit. Or it may be as drastic as seeking help to begin your life anew or to quit your job. Whatever the reason may be for your unhappiness, it is up to you to do something about it. For too long I have felt powerless in the decisions that have made up my life. I've done what I thought I should, and what was expected of me.

I see now that only when I take responsibilty for my decisions will I be happy. Many people never reach this part in their lives. Other people reach this long before I have. The important thing to keep in mind isn't how long it takes to understand this, but how successful you are at making yourself happy. You not only owe it to yourself to be happy, you owe it to your friends and family members. The ones that love you unconditionally and will be standing beside you in your fight for personal happiness.

Sometimes people are like the weather viewed from indoors. Looking at them they seem happy and contented. They smile when others smile, they laugh when others laugh. But, deep inside it is a different story. Deep inside these people are miserable, and unhappy. Afraid to show the real person to anyone but a few loved ones, they exist from day to day shining like the sun on a cloudless day. Inside they are just the opposite.

I've oftened wondered about these people. For many years I have been one of them. Pretending that things are better than they are, and hoping the world views me as a sunny, cloudless sky. When I am trying like this, it always shocks me when someone can look beyond the shiny surface and see the troubled woman beneath. Of course there are always people in your life that will know you no matter what surface they see. What is amazing, are the people that can see you for who you really are that aren't part of your inner circle. People that you see each day. People you think have bought the facade that you present.

Hiding behind an image you think others want to see is not only not fun, it's not healthy or good for you either. When times are bad and you need comforting they will never know if you hide behind a cloudless exterior. All people need love, caring, compassion and understanding to become normal, healthy individuals. The more we can open ourselves up to others, the happier we eventually will be. Many times I've been my own worst enemy. Pretending things are just fine when they aren't. In the future I plan on practicing my own advice. No longer will I hide behind a bright, sunny exterior when in truth I am cloudy, thundering, or sad.

June 23, 1998

Little by little life seems to give you what you need, when you need it the most. Whether it's a bright sunny day, someone caring about you, or a friend surprising you and saying they are coming for a visit, all things do seem to work out in the end.

Lately I've felt like there was a part of me missing. Like for some reason I just wasn't complete. I know alot of that feeling stems from the stress of applying, and fighting for my SSD. It's been a battle that has lasted almost a year, and most likely won't end before this calendar year is up. I have received numerous letters of support from friends an readers of my journal. I can't thank these people enough for thinking about me and being supportive.

It always amazes me how a kind word here or there can make all the difference in the world. Even a smile from a total stranger can set the mood for a great day. I have so little in my life that makes me happy, that when someone goes out of their way for me I really appreciate it. Since I don't know anyone around me, my friends are all on the internet.

Last night I talked to one of my best friends. He surprised me by saying he was coming to visit me this weekend. I think I scared him when I didn't respond. I knew he had some unplanned time off, and I'd hoped he would come see me, but it still took me completely off guard. I sat here totally stunned. It wasn't until he typed "hello?" that I realized I hadn't said anything yet. (lol) Once I asurred him that I'd love to have him visit then he seemed happy.

We have guests so rarely. Neither of us have ever really had many close friends. To have someone come to visit gives me so much pleasure. Especially when it's someone that knows me so well, and someone I have so much in common with. When I'm with this friend time almost seems to stand still. For once I am calm, no panic attacks, and I'm able to really enjoy life around me. It seems like everything is just a little nicer because of him. It's also a relief to have someone around that completley understands me. Someone that knows me so well, that nothing has to be explained.

Now all I have to do is get this house in order. It hasn't been cleaned since my last guests arrived a month ago. Hopefully by the end of the week I'll be able to get most of it done at least. I figure if I take one room a day, it won't be too bad. I just have to remember to stop every few minutes to rest, and keep my pain levels within control.

June 25, 1998

Sometimes life seems so over powering at times. There is always something that needs to be done or taken care of. With the limited energy I possess it's hard to know what to tackle and what to leave for another day. At these times it would be wonderful to have someone step in and say I'll take care of it for you.

We recently had some storms come through our area that left quite alot of damage behind. Driving through our neighborhood last night I was amazed at the level of destruction. Trees uprooted, some falling on the owner's home. Trees sliced in half, leaves and tree limbs everywhere. Our yard is full of fallen pine cones, fallen limbs, and looks horrible. After viewing the aftermath in other people's yards I realized we were quite lucky.

As we drove through the neighbohood everyone was out cleaning up the debris left by the storm. I would have loved to be able to go out and begin cleaning up myself. You'd think after 20 years of being ill I'd be used to it. I'm not. I feel so helpless, and being unable to do a simple chore like cleaning the yard leaves me very frustrated. My friend Don has already offered to do the cleaning when he gets here this weekend, but it's not up to him to do this.

Although there is so much that needs to be done all I can think of is how extremely tired I am. I'd tried to nap a little, but was woken up by the phone. It was my Mom, she called to ask me to help her find a new yard service. Since she is practically deaf, it's impossible for her to talk to most people on the telephone. I've always handled all of her phone communications for her.

I'm not sure whether the cleaning will get done today, or be put off till Saturday morning when hopefully I'm not as tired and sore. It would be so nice to have someone come to my house to clean for me. I grew up in a spotless house and I've always expected the same in my home. It gets on my nerves at how messy this place gets before it receives a thorough cleaning. Maybe someday I will have the chance to get the help I so desperatley need. Until then, I guess I'll just have to muddle through it, like I do everything else in my life.

June 27, 1998

It's only a little after noon, and it's already 100 degrees here today. I woke up early hoping to get some last minute cleaning done before my friend arrives tonight. My hands are shaking so much it's hard to hit the right keys to type this. I feel like I've already had a shower just from the cleaning. Even with central air conditioning, it's so hot and humid that any exertion other than breathing leaves you dripping wet.

Today will be a busy one for me. Preston leaves tonight for Northern Ireland for a week of meetings. We are picking up one of his coworkers to take with us to the airport. Since his flight leaves at 7:30 pm, we'll have to pick up his coworker around 6 pm. That leaves us less than 5 hours to get showers and get dressed, eat, get some last minute things at the store, get money and load the car.

What I'd like to do is to crawl back into bed and go to sleep. The least little things tire me anymore. My stamina levels are getting increasingly lower as time goes on. As it is, getting a shower, putting on my face, and doing my hair completely tires me out. It's almost overwhelming for me when I think of all that is left to do today before I can collapse tonight. At least I know my house is now fit for company.

Since my friend will be visiting me for a week or so, I probably won't get much of a chance to get in here and write. There are times when I'm glad that I'm too busy to write. Lately, the more I think of all that is ahead of me, the more daunting it all becomes. It's almost a relief to know I'll be so busy that I won't have to think of my future.

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