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Being online has been the best therapy for me. I have been touched by many wonderful people, too numerous to list them all. The special ones are the people that give me a compliment on my work. Or possibly just send me a note out of the blue, for no reason at all. Lately, I have found myself drawn to a select few. These three people have kept me sane and happy. They have given me a reason to wake up in the morning, and to continue to work on my website. One of the three is Dave. He and I have known each other for a year now. He is quite possibly the most kind and loving man I've known. Another friend I lean on is Jausten. She and I both share FMS. It is so wonderful to meet a person with whom I have so much in common. Lately we have been exchanging phone calls. She is like a sister to me, and she doesn't know what her friendship has done for me. The third, and certainly not the least, friend I have is Michael. Lately we have had the opportunity to be able to talk at a little more length. He is not only a wonderful guy, but a very good friend. Had I never gotten online I would have never met these people. My life would be one monotonous day after anoter, instead of each day bringing me closer to these friends I have come to love.   I'm secretly hoping Preston (my husband) will volunteer to do the mountain of laundry tomorrow. All I want to do is SLEEP! I can't wait till I get my new car. I'm hoping my schedule will be a little easier to deal with. I won't have to be up at 5am to get the car for the day. I also won't have to make a special trip to pick my husband up from work at night either. Not to mention the joy of driving a car I don't have to memorize the phone number to the AAA Motor Club! :) I try to limit the stress as much as possible. The more stress we FMS'ers have to deal with, the worse we feel. There are some stresses you just can't limit, like buying or shopping for a new car. Between the excitement of getting a new car, and the stress of paying more money for taxes and insurance, I have been a basket case all week. It hit me last night as I was talking to a man on FreeTel, that our anniversary is next Saturday. I had totally forgotten all about it. Now, I'm in this mad rush to find SOMETHING to give to my husband. I had thought of buying him some materials to do his Silver Smithing with. I talked to his parents yesterday and they told me they had already bought his materials. Now, I have no idea WHAT to give him. I might have to resort to giving him a home made present now that time is running out. When we were first married we had little to no money. I would make up a coupon book and give to him. One coupon for a romantic night, soft music, candles, and actually cooking dinner for a change. (lol) This might be what he gets again this year. :) Normally Preston and I have a schedule for the computer. He gets it from 6pm until 9pm, then it's my turn. But, being the sweetheart that he is, he told me I could get right online when we got home tonight. I was glad to have the extra time as I have so many projects I wanted to finish, not to mention a few projects I wanted to start tonight. So, I get hooked into Netscape (my browser of choice), and prepare to finish off an adoption page I'm designing for a nice couple. Guess again, I found that I couldn't get into GeoCities to do the updates. No problem, I'll just go answer some mail (I thought). NOT! As it turned out, not a damn thing was working tonight. Finally, after SEVERAL hours of alternately swearing at the puter, and doing everything I could think of, it finally started working. Must have been the swearing. *grin* Here it is 11:45pm I am just now getting into Geocities to write this journal entry. At this point I'm too tired to finish off the Adoption page, not to mention doing some serious changes to MY pages! Oh well, tomorrow is another day.....and I have all day to play. Too bad my phone bill is going to look like the national debt, I could really use a good dose of my best friend Jausten right now! That's what I get for making friends with someone in another country! :) I have a full schedule in front of me today. I'm hoping to finish off an Adoption page for some people, and then totally redo all the graphics on my websites. I also need to do some more contacting on this car situation. My mother isn't the ONLY one anxious to get a new car! Now, if I could just hear back from a dealer, I'd be all set. Another thing on my agenda is to do some phone calls for my mother. She has little hearing at all, and relies on me to do alot of her business over the phone. Although I have all these things to do, my first thought is to go back to bed. For FMS sufferers, sleep is a rare commodity. If we are able to finally GET to sleep due to the enormous amount of pain we have to endure, then due to the FMS we are not able to reach the deep sleep needed to relax our bodies. It seems to be a viscous circle. Lacking the sleep we need, our muscles never fully relax, and by not having fully relaxed muscles, we are constanly in pain. Any way you cut it, it's a no win situation. By the time I got home tonight I was so frustrated, and stressed that I ended up crying over my dinner. I just feel that if I have to endure one more thing, I'm going to SSSSsssnap! The truley sad part is that most of my stress is over this new car. To me, doing graphics is so relaxing, and it also makes me feel like I am contributing something. Ever since I had to quit working (7 yrs. ago), I have never felt productive, or that I was doing anything worthwhile. Most of the time I felt as though I was just taking up space, and making more work for Preston. Although he has supported everthing I have chosen to do, without ANY complaints, I still felt like I wasn't putting in my 100% towards life in gerneral. It is amazing how life changing FMS can be. I had come to terms with my illness a long time ago, but, it's only been recently that I have felt my life had any meaning again. Doing my webpages gives me great satisfaction, as well as making me feel that I am contributing something to the world in general. My websites give me a reason to get up in the morning, and through my webpages I have met some of the nicest people. Alot of the people I have met have become very special friends to me. Being handicapped, I need to have a special license plate for my car. Naturally, the dealership didn't have one, so I had to go to the DMV (Dept. Motor Vehilcles) to get the special form. That in itself was quite an experience. I stood for 2 hours WAITING to get a stupid form. For those of you with FMS, you know that standing in one spot that long is shear agony. At one point this guy just waltzes in the door, butts to the head of the line, and gets waited on. Me, being VERY hot, (temps in the low 100's today) and tired, not to mention being in extreme pain, said (loud enough to for all to hear) "I guess he's too good to stand in line for hours like the rest of us". Then I mentioned that all I needed was a form. A few of the women nearby told me to get ahead of the others and get my form. When I looked around, most of my fellow waiters nodded in agreement. So I did, and was on my way to my NEXT stop. In order to get a handicapped license plate you need your Doctor to fill out part of the form. I had discussed this with my Doctor last week when I was in, and he had told me to just drop it off and he'd be happy to fill it right out. When I told the receptionist this story and she said, "He's with a patient, he can't be bothered." I told her that I understood that and I would be more than happy to wait, and promptly sat down. 45 minutes later she told me that it would be all afternoon before he could get to it. I again told her that was perfectly fine, I would wait. I've played this game before. They tell you to come back at 5pm and the form will be signed, but, once you DO come back, then they tell you the doctor was too busy to fill it out. I had to have this form signed today, and I was prepared to hold out till hell froze over if necessary. Two hours later, she called me over and told me he had signed it. I could tell from the look on her face that it pained her terribly to see he HAD actually filled it in. :) My next stop was to drop my Mom off at the grocery store while I got the new car insured. The man was very nice, and helpfull, and in an hour I was on my way yet again. I pulled in the grocery store lot just as my Mom was coming out--good timing. Got the car loaded, hit the bank to cover my downpayment check, and drove her 25 miles home. I helped her unload the car, got back in and drove another 25 miles to pick up my husband from work. It wasn't until several hours later, after a few Pepsi's, that I finally began to unwind. The more I loosened up, the more tired I became. I'm just glad this whole ordeal is over with. We pick up the car tomorrow! I remember when we had been set up. A customer of mine from the beauty shop I owned had come in one day. She was talking about her husband's boss and asked me if I was dating anyone. After I had told her no, I wasn't, she began telling me Preston's vital information. The more she told me, the more I decided this guy HAD to be ugly as hell, he just sounded WAY too good to be true. After seeing his picture I gave her my phone number to pass along to him. Two weeks went by, and still no call from him. My folks had begun refering to him as "Mr. Right". (lol) On the Saturday of the second week he called me. We talked for 3 hours that night. We had made plans to go out the following weekend. When he came to the door I was in shock, even though I had seen his picture, I still wasn't prepared for how good he looked. I think he was a little surprised too, he had asked me out sight unseen. To make a long story short, we were engaged 5 weeks later, and married 5 months later. I remember having customers hinting that I must be pregnant to be getting married so quickly, but here we are, 11 yrs. later and no kids. I guess we proved them wrong. Mainly, the reason we married so quickly was that we both knew what we wanted, and it was each other. Of all of the decisions I have made throughout my life, marrying Preston was the best one I have EVER made. I'm the luckiest woman alive! Personally, I was up until 4am this morning. I met up with a good friend around 1am on ICQ. We talked there awhile, then he called me on the phone. We talked on the phone (long distance of course) until 3am. By the time I got the house locked up, the lights all turned off, and the dog taken care of, it was just about 4am. Now that I have called my Mom to let her know that I am alive, my first inclination is to veg out in front of the PC all day. Like I said earlier, we had talked of going out and seeing a movie. But, I'm too tired to go through that whole process today. It is difficult for me to go see a movie. Now that my FMS is in full swing, (and has been since January) I spend most of my time in my wheelchair. In our area there is only one movie theater that has an area set aside for wheelchairs in a GOOD viewing area. If I'm going to spend good money to see a movie, I'd like to be able to SEE the movie, not be stuck in the very back of the theater. Tonight, the main thing that keeps going through my mind is how miserable I feel. With FMS, there are 18 different locations throughout the body that create enormous amounts of pain. They are referred to as either "Trigger Points", or "Tender Spots". This is where the pain originates from. From my experience, the longer you have the pain, the more it spreads around the body. What might start as a pain in your shoulder ends up encompassing most of your neck, and upper back as well as all of your chest. Tonight, not only do I have all 18 of the spots in full combat with my body, but I'm getting my "Flu" feeling as well. I call it that mainly because that's what it feels like. I'm hot one minute, freezing cold the next. My skin feels like a giant brush burn, just a gentle hug from my husband is enough to bring tears to my eyes, and the fatigue is overwhelming. At 9:30 at night, it's still over 80 degrees outside, and terribly humid, so Air Conditioning is a must. Unfortunately, the A/C makes my FMS much worse. I'm so glad I never bought a camera to use online. : ) Most evenings I sit here half exposed, because of the heat, and half wrapped up like a mummy due to the A/C. Tonight I have my knees wrapped up to keep them warm and ease the pain a bit, my slippers on to keep my feet warm as well, and a warm towel around my neck and shoulders for the same reason. But, at the same time I feel like a snow cone in hell. You just gotta love South Carolina in July.....WHY AM I HERE??? lol In my whole life, there have only been two people that I have met that have held a special place in my heart. One was a girl friend of mine I met when I was 8 yrs old. Her mother had terminal cancer and commited suicide when she was 13 yrs old. Her parents were divorced, so when her mother died, she and her siblings moved in with her father. She and I lived across the road from each other. She was always at my house. We spent many hours at her pond either sitting on the dock discussing our futures, relating personal problems to each other or lending support to each other. She was like a sister to me, and my very best friend. Her father was an alcoholic and a child abuser. She would have marks all over her body from his physical abuse. That was one of the reasons why she pratically lived at my house. When Cindy was 19, she was killed in a car accident. Her death was very hard on me, I missed her so much, but I knew for the first time in her limited life, she was happy. I never really found anyone in real life that could take her place as my friend until I met my husband. He is the second person to capture a special place in my heart. I could go on and on and bore you with all the details, but suffice it to say, he has been more than I had ever hoped a husband could be. He has been there for me countless times, and helped me to live with my FMS. I can't imagine life without him, nor do I want to. In the last year so much has changed for me. I have learned to use a computer, learned to design my own graphics, taught myself HTML language, and have met and made some wonderful friends. It sometimes feels to me that my life began once we got our new computer. I have more friends in my life now than I had ever thought possible. Each year we do something different. Normally we make our presents from scratch, but this year I'll be lucky to just get through the simple projects we have planned. We have decided to paint objects this year. Vases, jewelry boxes, pretty much anything that doesn't move. :) I love to paint things. I completely lose track of all time when I'm painting, it relaxes me so much. I think another tradition that we are going to have to curtail this year is making our Christmas cards. What we have done in the past is to buy blank cards, and some stamps. Then we get a small assembly line going. My Mom stamps the card then she hands it to me and I apply the embossing powder. Next you apply the heat gun to the card to melt the powder. When you are done you have a very professional looking card. The last step is to color in the stamped design. Most of the time we use magic markers to color the design. Last year we painted them with watercolors which was pretty, but terribly time consuming. One of the millions of things I hate about my FMS is having to cut more and more from what I'm able to do. The longer I have it, the more I have to cut out. This is where the computer has saved my sanity. When the day comes that I'm no longer able to do my graphics, or design webpages I'll be ready to go. I have not experienced a remission in 6 months, in the past year I have only had that one remission lasting only 3 weeks. As hard as I try, there are times when I get very depressed and discouraged. Yesterday was one of those days. When I got online last night I began to search for some of my friends. One of my best friends lives in Western Canada, and I knew it was too early for Jausten to be online. So, I began looking for my friends in my own time zone. I had one friend that was working a 24 hour shift, and I knew he wouldn't be around. My other friend was also not available. I did locate my third friend, but our conversation was short lived, for he had prior commitments. I sat here pondering my choices when I got an ICQ message from Jausten, the one I needed the most. We tried to get together on Pow Wow, but with no luck. Within five minutes my telephone was ringing, and it was her! We talked for 3 hours. When I got off the phone I felt so much better. Jausten was just what I needed. In a short period of time Jausten has become one of my best girlfriends, if not THE best one. Talking to her is always comforting to me. Mainly because we both live with FMS and seem to have the same type of personality. But also because she is a great person and a terrific friend. She has been here for me when I have needed her the most and I can't thank her enough. Physically I feel just as miserable as ever today (if not worse), but at least my mood is a little better because of our chat last night. I'm just hoping I can hold out until the first of the month when I can return the enormous favor, and call her. Not having any friends or family (with the exception of my Mom), living nearby, my phone bills look like the national debt. Especially now that I have made such a wonderful friend in Western Canada. : ) Last night was a particularly low point for me. I knew there was no way I could afford to call my friend Jausten, but I desperatly needed to talk to a close friend. Just as I was about to give up hope my best friend Mike called me. We talked online for several hours. Many times I sat here crying onto my keyboard as he patiently waited. He gave me the comfort I was looking for, as well as the compassion I needed so badly. Mike is quite possibly the most compasionate man I have ever had the good fortune of meeting. He writes to me almost daily, and when possible, is always there to chat with me. Lately, he has been a huge source of comfort to me, and I honestly don't know what I would do without him. He has earned a VERY special place in my heart! I was able to sleep until 11 am when the phone woke me up. Hoping that Preston would answer it, I let it ring. After three rings I knew the machine was going to pick it up if I didn't, so I rolled over and grabbed the phone. Growing up like I did, a ringing phone never meant good news, so you ALWAYS answered it. I'm glad I did because it was my oldest niece calling me from Maryland. She and her husband have the cutest little girl, and she was calling me to tell me that Megan started crawling last night. I hate living so far away from family members, it's little things like this that once missed, never happen again. As badly as I need groceries, we literally have nothing in this house to eat, the last thing I want to do is to go out today. It took me a full ten minutes just to walk from the bedroom to the computer room, only a distance of a few feet. If our house was better equiped to handle my wheelchair, I'd use it in the house as well. My shoulders bother me so much that trying to push myself in the chair is shear agony for me. I have read several places that FMS is not supposed to be degenerative, but you can't fool me. I've lived with this for 19 yrs, and over that length of time I have continued to only get worse. In the early years I would average 2-4 remissions a year lasting anywhere from a few days to a few weeks. In the last year I have had one small remission. Last year I had 2 remissions. Now tell me that isn't degenerative! Normally I stay FAR away from chat rooms. But, a good friend of mine had suggested we go in and try to stir up some trouble. ;) The members of this chat room all have FMS. At first I thought it sounded like a great idea. I needed to get kinda wild and crazy to get out of my depression. After being there for awhile I began to notice all the crybabies in there. I realized I had been an FMS sufferer probably longer than any of them and I felt like it was up to me to make a good example. I'm not sure that I did, but being in there reminded me that lately, I've turned into one of THEM. And I didn't like it. SO, today I am REALLY trying to turn over a new leaf. I'm not sure how successful I will be, but I have to try. I have met, and made too many special friends to lose because of my depression. Plus it's far cheaper than going back to my shrink. (LOL) I just have to realize that I have no real choice as to what happeneds to my FMS and how it effects me. I can either go back on the drugs, suffer the side effects and feel SLIGHTLY better, not to mention the added weight gain. Or, I can do as I am now, and just muddle through drug free. At least by doing it the drug free way, I can work on reducing the weight gain caused by years of medications. In the 10 months that I have been drug free, I have been able to lose 25 pounds. All in all I'm lucky, I have people that care about me, and some that even love me. Not everyone, healthy or unhealthy, can say that! No...is a very hard word for me to say. I seem to be at my happiest when the people I love are happy. But as my FMS gets increasingly worse, and my pain and fatigue levels soar, I am going to have to learn to say that word more often. Tonight was a classic example of that. My husband's boss is leavingthe department. The employees had planned a fair well dinner in his boss's honor tonight. This meant getting all dressed up in a skirt and high heels. On a happy note, the outfit I had planned to wear tonight SWAM on me! That means I have finally seen some concrete proof that I AM losing weight. On the down side, sitting for 3 1/2 hours in a VERY hard wooden chair did me in completely. All evening I tried to find a comfortable position as I attempted to eat my meal. The plastered smile I tried to present probably looked more like a grimace. When it FINALLY came time to leave, I found I couldn't move. With the help of my husband and another person, they got me on my feet. (This was a NON-handicapped equipped restaurant, so I had to leave my wheelchair in the car.) Bad move on my part. What I should have done was to say thanks for inviting me, but I'm just not physically up to it. One (somewhat) happy closing note: As I was attempting to leave, a wife of one of my husband's co-workers came over to talk to me. She said ..."Wow, you look great, you've lost alot of weight". That made me feel really good. But then she followed that up by..."Are you in pain?" Is the Pope Catholic?, I felt like saying, but I just nodded and made my way (slowly) to the door. It seems that every day with FMS is a learning experience. Today I think I've learned the value of the word...NO! ;) I remember the first time I saw the movie "The Net" (with Sandra Bullock). At that time I had only used a computer (an OLD Mac 412K) to write letters or play games. I remembered wondering how you could live in a neighborhood and not know any of your neighbors, really not have a life at all, as my Mother views it. :) Then we bought a new PC and I got online! LOL If it wasn't for having my Mom living nearby, I would probably never leave the house. It seems that it's only since I have gotten online, met people and designed my own website, that I have felt that I belonged somewhere. For the most part, people online don't seem to judge you by appearance, or physical limitations, like people in the "real world" do. Trust me, there ARE exceptions to that rule. Fortunately though, those people are few and far between. By 3 am the pain was unbearable. I tried laying down and going to sleep but it was no use. I then got up and paced....as much as I can.....around the house a bit. When I came back to bed my migraine was even worse. Preston woke up and asked what he could do. I had told him I'd tried using a cold compress on my head but it had only made me feel worse. Then he explained to me that migraines make the blood vessels constrict and cut the supply of blood to the brain. By using a cold compress I was just making it worse. As usual, he was right. Once I took the compress of my head my migraine began to go away. I think I got about 2 hours of sleep before the alarm went off. I spent most of today wrapping things up before leaving tomorrow on our long weekend vacation. Every year we go to a small town in the mountains of North Carolina. My husband makes jewelry in his spare time, and we go to this town to attend a Gem & Mineral show. I love to go to look at all the gorgeous jewelry, and faceted gem stones. We also take a side trip to a gem mine and "Pan" for our own gem stones. This is like a miniture treasure hunt to me. You never know what you're going to get, most of the time it's nothing that can be faceted, but it's still fun searching. So, there won't be any entries for a few days. I'll probably resume my journal on Monday, Aug. 3. Have a good weekend, I know I will! :) | ||||||||||||||||||||||||
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