As Misty's World Turns - January 1998


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Jan. 1, 1998

In keeping with my tradition, this month's song is dedicated to Dave. The song is "Let It Be". One of the lines in this song is: When I find myself in times of trouble, mother Mary comes to me, speaking words of wisdom...let it be. Well, Dave has always been the one I've turned to in times of trouble, it just seems fitting that I dedicate this song to him.

It's hard for me to believe that we've already started a New Year. I wish everyone that reads this a wonderful New Year. It seems that I've spent most of my life fighting for something, and it tires me more than anything to fight. Right now I'm in the process of fighting for disability. I've already received my "denial" letter from the Social Security Administration, and I've received a denial from an attorney here in town. I'm hoping someone will help me, but if not, I'll go it alone.

I think what pisses me off the most is the fact that the people who decide my fate are not medical practitioners at all. How can they possibly say that I am not disabled when they have no medical knowledge what so ever? As every person with FMS can tell you, it's nearly impossible to find a doctor that has either heard of FMS or has any working knowledge of it. So if nothing else, to be told by some person with NO medical knowledge that I am fully capable of working is total garbage to me.

People who suffer from Fibromyalgia are courteous, persistant, loving, hard working individuals. They also tend to be perfectionists. Anyone who has been diagnosed with FMS has had to work their butt off to find out what they have, seeing that many medical professionals have never heard of this illness.

I began working at the age of 16. I worked for my brothers, first I pumped gas at their gas station. (I'm dating myself here) Then I worked for them as a receptionist. Two weeks after graduating from high school I began attending Cosmetology school. I worked six days a week, eight hours a day. I drove almost two hours one way just to get to the school. While I was attending cosmetology school, I also apprenticed with the owner of the school. After completing the reqired 1200 hours of instruction, I began my career as a hairdresser. At this point I worked six days a week, 10-12 hours a day, standing, bending, using every muscle in my body.

To say this kind of work was difficult is an understatement. As the years wore on, the pain became unbearable. My husband decided he wanted to go to Graduate school, so I quit doing hair and worked in the university labratory. The position was part time, but I still missed two weeks a month, being bedridden and unable to work. When my husband graduated, we moved to South Carolina. The doctor I found here said that my only hope was to quit work, try to reduce my stress levels, and try to get more sleep. In the last year I've been confined almost full time to a wheelchair. I'm only able to walk a few feet. My days of doing things for myself are over. My husband does everything, from cleaning to laundry. I have gone from being an independant woman that has always taken care of others, and been a hard worker, to being a woman that must rely on others to do things for me.

Now, after I've literally worked my ass off for years, I'm being told that I'm not eligable for what it rightly mine. I'm being told that being stuck in a wheelchair, being unable to walk, being unable to use my arms, being unable to do any kind of work is NOT considered sufficient proof of disability. What DO these people want? Having two incurable illnesses is hard enough, without the added stress of trying to prove my disability to a bunch of people that probably don't know the right end of a thermometer, much less determining someone's ability to hold down a job.

Jan. 2, 1998

Preston's New Year's resolution was to keep our house cleaner. He has spent the majority of the day cleaning. Since the last time this house was cleaned was for the 4th of July, you can imagine what it looked like. After 8 hours of cleaning, he still isn't finished. I'm sure he's having the same thoughts as I did each time I used to clean this house....WHY did we get a house with over 2000 sq. ft. of living space for just the two of us?? (lol)

My contribution to the cleaning was to wash the various knick knacks and to wipe off the picture frames. That was all it took. Now my shoulders are in so much pain I can hardly move or lift my arms. Now that I've quit moving around, I'm freezing again. I guess I'll have to go get another blanket and wrap up some more if I hope to worth a plug nickel tomorrow.

I get so depressed when I think about how much my life has changed over the last 19 years. As hard as I try to stay positive, it never seems to last very long. I guess staying busy is the only choice I have. If my mind is occupied, I'm able to look at life in a more favorable light. Since our trip to Florida, I've been in worse shape than my normal. The stress of flying, the lack of sleep, the head/chest cold I picked up all contribute to feeling miserable.

I've been depressed for almost a month now. Things that normally put a smile on my face don't seem to work for very long. I feel so alone most of the time, and so very misunderstood. The sane part of me says I should go back into counseling, but the other part of me asks why bother.

Jan. 3, 1998

Well, dinner is not only done, but the dishes are all in the dishwasher, now I can relax. I figured since Pres has been killing himself for the last two days cleaning this house, the least I could do was cook dinner. As much as I hate to cook, it did seem nice to have a good meal.

The last few days have been really strange for me. I seem to have this little black cloud that follows me all around. No matter what I do, I can't seem to get out from under it. I've had something I've been thinking about lately that has really upset me. Just when I think I'm doing better, it sneeks up behind me and grabs me again. I know if it were for a few new friends I've met recently I'd really be losing it.

I've been fortunate enough to meet people just when I need them the most. Recently I've met a man named Don. He has understood me, and my problems more than most people. When ever I've needed a shoulder to cry on he's been there for me. I found out today that he will be traveling through my area soon, and I'm anxious to finally meet him face to face. I've also heard from a friend from my not too distant past, Mike. I always enjoyed his company, and it's nice to have him back again.

I once had someone tell me that just when you needed something, a door would open up for you. I've found this to be so true. Like all of us, when you get involved in different activities, you tend to loose track of some of your friends. Lately, some of my friends have not been around. I know in most of the cases, it's just that they are busy with their own lives. I have worried about my friend Dave. It's been ages since I've seen him around, and I hope it's just because he's real busy.

So, as the evening wears on, I'll have two things going through my mind. I'll be contemplating a situation that never leaves me, and I'll be remembering something very nice that Mike said to me tonight.

Jan. 4, 1998

Today has already been a better day than I've had in a long time. I was woken up at 5 am (after getting to bed around 1 am) in the most delightful way, *wink* Afterwards, I fell asleep again until 9 am. I got up, made my coffee and decided to tackle the bills. Once I had the bills all paid I walked them out to the mailbox. As I was walking back up the driveway, I noticed a package on the front porch. When I picked it up, I noticed it was addressed to ME!

When I opened the box I saw the cutest Teddy Bear. Along with my bear was a cute little booklet on the care and maintenance of my bear, and a wonderful card from my friend James. When we had met online, many months ago, I'd told him that his pic reminded me of a cuddly bear. Now I have my bear, named James of course, sitting on my desktop.

Between my night last night, talking to my new friend Don, and my morning wake up call, AND my lovely gift, I'm one happy camper today. It's amazing how a gift from someone can make all the difference in the world. In the last 24 hours I received 3 wonderful gifts. Don bestowed upon me the gift of his time and compassion, Pres bestowed upon me, well, he he he I'm sure you can guess THAT gift, and James has given me a cute Teddy Bear. Life IS good after all!

Jan. 6, 1998

I'd gone to see my doctor today for a combined "follow up exam" and to get on his butt in my defence for disability. I'd actually been dreading this appointment. When I was there 2 months ago, he suggested I try a new supplement, and he also suggested I try a swim program designed for people with Arthritis. When I'd called on the swim program, I found out that they only offer it at night. Driving downtown, by myself at night, is not my idea of a fun evening. I knew the stress of being alone under these circumstance would play havoc with my panic attacks. So, I never went. I knew he wasn't going to be very pleased with me.

I'd told my friend Dave my fears as we spoke this morning, and he suggested I lie and say I'd gone, but that I couldn't handle the stress and had quit. As tempting as this option was, I just couldn't do it. I have a real thing about honesty, from myself and others, and it's just not in me to tell a blatant lie. So, when I was asked I told him the truth. He really wasn't as upset with me as I thought he would be. We also discussed my further use of medication. I think I've FINALLY gotten through to him on that topic too. We also discussed my disability, and he assured me he would try to be more explicit when he is interviewed for my appeal.

When I returned home I was feeling a little hope in this situation. Then I got my mail. In the mail I'd received a letter from the S.C. Vocational Rehabilitation Department. I quickly scanned the letter and read that I was "suggested" to give them a phone call and make an appointment with them. The letter also went on to say that I was to read the enclosed pamphlet. On the first page of this pamphlet it had a description of who was eligable for this service. "People who can no longer work" are eligable. Let me get this straight, I'm not considered disabled, but I AM considered unable to work??? Am I missing something here??

I do know one thing, I'm not calling, writing, or answering any questions without speaking to an attorney first!

Jan. 7, 1998

After a miserable rainy day, it was nice to finally get home tonight. I fed Jack while I was waiting for the computer to fire up. Once Jack had been fed and watered, I was ready to get online and check my mail.

I was just finishing my mail when I got a message from my friend Don. We talked in icq for a while when my phone rang. I was in the process of answering a question Don had asked when the phone rang. I picked up the phone and found I was talking to Don! (lol) Although we had used our mics in FreeTel once, it had been along time ago, and for a split second I had no idea who I was talking to.

It's amazing how a good friend can completly turn around my mood. My day had been less than great, the traffic was terrible coming home, and by the time I'd gotten my mail I was soaked. To say I wasn't in a real good mood when I logged online would be an understatement. Within minutes of talking to Don, I was not only relaxed, but laughing as well! I have been truly blessed with good friends. Without Jausten, James, Dave and Don, I'm not sure what I would do....thanks guys! : )

Jan. 8, 1998

I think if I was asked what I thought the most important thing I've accomplished online would be, I'd have a hard time choosing. It would have to be a toss up between my FMS/CFIDS information website, and my Blue Ribbon Award. I've received so many letters from other people suffering from either FMS, CFIDS, or like me, both. It's also been a terrific experience for me to offer the Blue Ribbon Award. It's nice to know that through my websites I've been able to touch so many people.

Years ago, when I had to end my working career, I felt so useless. I always judged my personal worth through my work. Although it was nothing earth shattering, it did make me feel like I was doing something good. It took me a long time to come to terms with not working. I would go to parties, and be asked what I did. When I responded that I didn't work, they usually left abruptly.

I think it's a shame that a person's value has to be dependant upon whether they perform a specific job function. To the eyes of so many, if you don't hold down a job outside the home, you must be lazy. They view you as one of those people that sit in front of the TV by the hour watching mindless soap operas. (Not that there is anything wrong with them if that's your thing) It wasn't until I began writing my webpages that I felt I was doing something important again.

Although my "fan mail" isn't very extensive, it does make it all seem worthwhile to me. Knowing that through my FMS/CFIDS site I'm able to help educate people has made me feel good. Knowing that because of me there is a person out there that not oly has a smile on their face, but has a better view of their self worth (by winning the Blue Ribbon Award) makes me feel warm and fuzzy inside. Of all the things I've done in my life, writing these websites has been worth all the pain involved with sitting at this computer. Not long ago I had a man write to me. He was giving me some pointers as to how the SSA works in reguard to disability. He pointed out to me that it wasn't what I could "no longer do" that they wanted to know, but rather, what I COULD do. He said if for instance had I been a steel worker, and could no longer do that type of work, but, I could do graphics and design websites, that I had a marketable skill.

I'm sure he was trying to point out that there were some things I could do. What he didn't realize is that in order for me to do a website, or graphics, or anything else for that matter, it involves many hours, and tons of pain. Someone that isn't suffering from FMS/CFIDS could (with my knowledge of html) sit down to the computer and whip off a page, or a graphic in no time at all. For me, it's a little different. Since, due to my high pain levels, I'm unable to sit for any great length of time....it takes me hours to do what someone else could do in a matter of minutes.

I'm sure he was trying to be helpfull, and not nasty. His letter has occupied many of my waking moments since I read it. The one thing that has been my salvation has been my websites. They have enabled me to want to wake up in the morning, and deal with the pain involved, because I get so much from them. When I quit work, I distinctly remember thinking that my life as I knew it was over. I'd even entertained the idea of suicide. That's how unhappy I was. I'd hate to think the one thing that has made me want to go on living, will ultimately be the one thing that keeps me from obtaining disability.

Jan. 9, 1998

Now that I've gotten Jack fed and the fish fed, I think I can sit back and relax. As days go, this wasn't a bad one, I'm just really glad it's over and the weekend have officially begun !! As usual, we have no real plans for the weekend, other than continuing to get this house ship shape. We have a few minor things that need to be done before my friend Don comes to visit the following weekend.

I'm really looking forward to his visit, as is Preston. It's been quite a while since I've met anyone that puts me in such a good mood, reguardless of how my day has gone. Don and I share so many simularities, that's it almost scary. (lol) I think one of the best qualities he has, is his sence of humor. He never ceases to make me laugh.

Last night I had finished the new background for my main page, and went in search of some friends. Don has known me long enough to realize the phrase I seem to say the most is "I'm sorry". I'd seen Don in icq, but had no idea he was busy chatting with someone else. Once I realized this, I apologized for bothering him. Don has a habit of saying "thank's", or "thank you" all the time. Earlier in the evening we had said that when one of us says "thanks", the other person will say "sorry". I think we must have spent an hour just sending messages back and forth...."sorry"...."thank you". (lol)

Jan. 10, 1998

I sit here with my hands shaking, my heart pounding and perspiration rolling off me. Sounds the the after effects of great sex huh? (lol) I wish! Actually, believe it or not, I've been cleaning! Last week when Pres cleaned he got most of the house done. The bathrooms never got cleaned and the computer room never got cleaned. Basically the only two rooms we spend any time in. The cobwebs on the desk alone could have supported a small child. Not to mention the parts of this room that we don't use!

What had been intended to be a quiet lazy afternoon has transformed it self into a cleaning day. I'd like to think I could finish off what didn't get done last week but I know better. It's such a great feeling of accomplishment to see a clean desk, and no cob webs. To give you an example just how bad it had gotten, last night someone gave me a url to a site. I had no paper to write on, so I used my finger and wrote on the DESK! Now that's dusty!

As I was taking a smoke break, I got a message from my friend James. We had a nice little chat, as he was on his way to take a nap. My time with James is short and few and far between, but I still enjoy what time we can talk. There are some people that you meet in your life, that touch you for one reason or another. They leave an imprint on your heart that lasts long after they are gone. James is one of those people, and always will be.

I'd finished talking to Don last night and I decided to go into my journal and do some reading. Don has been reading all my journal entries in hopes of finding out what makes me tick. (good luck Don..lol) There were a few points that seemed to jump out at me as I read it. One point I noticed was how my life seemed to revolve around my friends. When they are happy, I am happy, and when they are depressed, I ache for them. Another point I noticed was how incredably depressed I seem to be all the time. I think it's funny how when I talk to people in a chat program I can be up and perky and seem happy. It's only when I get introspective in my journal, that my true feelings seem to surface. Interesting.

Jan. 11, 1998

As I sit here this afternoon many things are going through my head. Loss, sadness, pain and a sence of being alone. The last year and a half has been a learning experience for me in so many ways. Learning html, java, making friends, keeping and loosing relationships online, and so much more. Since I have no friends living near me, my online friends help to get me through my days. They are here to listen, comfort me when I'm upset, and to make me smile when I need it.

I may not be able to physically feel their hugs when they are trying to give me comfort, but I do feel them. If you've never made a friend online, you can't begin to understand it. For those of you that have made very close, special friends, you know how it feels. I'm luckier than most when I look back and recount the people that have touched my life.

Last night I lost a friend....a very close friend. For many months, my life seemed to revolve around my friend. We shared many interests, many simular life experiences, and many hours of chatting. Although I knew this loss was inevitable, it still doesn't make it any easier. Today I feel like a part of me has died, and I don't know if I will ever get it back. I'm not sure I even want to. Sometimes it just seems easier to build a wall around myself and never let anyone in again. Easier, but not healthy. So, I suppose I will go on, having learned much. I'm thankful for the few special friends I have. They let me know they are here for me, and for that and many other reasons, I thank them.

Jan. 12, 1998

I had been tired early yesterday afternoon, and had taken a nap. As last night wore on, I was less and less tired. I alternately spent my night crying and blowing my nose. I even shut down the computer early, I just didn't want to have to interact with anyone.

The stressful combination of being at my Mom's today, and loosing one of my very best friends, has really hit me tonight. My skin is so sore that wearing clothing is painful. My fatigue levels are so high (I only got 2 hours of sleep last night) that I've had a devil of a time staying awake today. Not to mention my panic attacks today (30 last count) have taken it out of me. I had a massive attack as I was driving to my Mom's house this morning, and almost lost consciousness.

Today, with little to no sleep, and sore puffy eyes, I feel like the walking dead. Probably look like it too. I've been lucky to have three friends supporting me through all of this. Without Jausten, Dave and Don, it would have been alot harder. It's funny, half of me feels the biggest sence of relief. While another part of me feels lost and adrift.

Jan. 13, 1998

This has been a maddening day so far. I'd decided to try to get a few extra things done today, for my friend's arrival on Saturday. Our bedroom was filthy, not really the room as much as the drapes. I got on a chair (you don't want to know how I got up there) and took them down. Once they were clean again I attempted to put them back up. The woman who'd lived here last had done a really super job of installing the hardware. Instead of doing it right by drilling a hole in the wall, installing anchors, and then putting up the hardware, she just shoved the screws in the wall board. Not a really bright thing to do. It took me an hour to sort through our junk drawer looking for wall anchors the right size. Once I'd found them, I installed them and got the drapes back up. The next time I go to wash them I won't have to worry about the whole thing hitting me in the head!!!

After I'd gotten the drapes in the washer I'd decided to get online to check my mail. I'd just about finished my mail when I got a message from my friend Ken. He was calling to see if I'd be interested in chatting. I said I'd like that, but I needed to finish off my mail first. He said he would wait. I had just finished adding a new member to my "Hall of Fame" when the computer lost it on me. Over the last 3 days I've be working along and all of a sudden, for no reason, the computer reboots on me. That isn't the worst part though. Once it reboots, it just stalls in the start up mode. It never gets to the point of opening Windows. Usually it takes SEVERAL attempts before the damn thing will open Windows and allow you to work again.

After the computer started acting up I knew this was not going to be my day. It took me almost an hour to get it working right again. By the time I got online again Ken was gone. I hadn't been in icq long before I'd gotten a message from him (he was offline) thinking I'd run out on our chat. I left him a message explaining what had happened. At the printing, I've not heard back from him. It seems my life is in constant crisis anymore. If it's not family problems, health problems, Social Security problems, loosing special friends, it's friends misunderstanding me.

It's funny, I had a woman write to me the other day asking me how I handle having FMS/CIFIDS, like I had the magic answer. (lol) I wish I did. All I could tell her was to take it one day at a time. To be quite honest, I spend most of my days at the *very* edge of my rope. I used to handle stress very well, but anymore the least little amount of stress and all hell beaks loose. My fatigue levels sky rocket, I develop this feeling that my entire body is one large brush burn, I feel like I have the flu - cold one minute - sweating the next, my panic attacks multiply, my pain levels go crazy, and my depression deepens. Is it any wonder I try to avoid any stress?

Jan. 14, 1998

Well, looks like I'm going to get this entry in just under the wire tonight. I'd gotten home around 4:30 pm, got online, did my mail. About the time I'd finished my mail Pres got home and we went out to dinner. I'd had a pretty stressful day, and I was just beginning to unwind on the drive to the restaurant. I'd attempted to pull into the entrance to the restaurant when this car coming out had taken up all the space. I didn't find this out until I'd already tried to pull in. I got half way in and saw that there was no more room. Naturally this jerk never bothered to back up. So, here I am, trying to back up when another jerk attempts to pass behind me. When I'd finally gotten by jerk #1 I hit the accelerator and burned rubber.

By this time Pres was giving me crap about almost hitting the guy. He exagerates, I had plenty of room. By the time we got out of the car I was fuming. So much for calming down after my day. There are few things that bother me, but the ones that do bother me, get me big time. They are as follows: 1) Anyone complaining about my driving. (this includes family members!) 2) People who haven't got a clue on the highway. 3) Rude people (in and out of their car). 4) Anyone that gives me crap about smoking. 5) Bigots! 6) Narrow minded people that want me to live my life *their* way.

Ok, so now you all know what *not* to do to me. (S) I was to find that my evening was going to get worse, much worse. After a really nice chat with my friend Ken, I got a message from Don. He was calling to say that he was going to have to cancel his trip down to see us this weekend. He lives in the northeast, and they are calling for some pretty nasty weather. I'm not sure which one of us was more bummed out. I've been preparing for his visit for a full 2 weeks, cleaning everything that doesn't move. I even got the vacuum out the other day and vacuumed my DOG! (he wasn't *real* pleased about that either! lol)

So, here I sit....disappointed as hell....But I am glad he is not going to attempt driving if the roads are going to be dangerous. Good friends are hard to come by, and he's one of the best I have! Hopefully we can plan this for next weekend, or maybe the one after that. Like he said to me tonight, it seems like there is always something that messes up our best plans. Oh well, like Pres always says..."we are only guaranteed the *right* to persue happiness, no one *guarantees* us happiness."

Jan. 15, 1998

I am not sure what to write tonight. I know what I'd like to write, I'm just not sure I have the courage to write it anymore. I'm not sure I have the courage for much of anything right now. I know getting offline permanently is *very* tempting. There is just so much a person can take. Just so many times that someone can hurt you before it effects you. For someone like me, little hurts are felt more than just skin deep. They go all the way to my soul. God, how I wish Jausten were home right now. She's on a much needed vacation. She's also the only one out here that seems to understand me anymore. There are a few other as well, Dave and Jeannie. Three people that I have known for many months. In Dave's case, more than a year.

Earlier this evening I began talking to an old friend. We were trying to decide if we wanted to resume hanging out with each other again or not. I've missed him alot of the last few days. Apparently he has missed me too. We both agonized over what to do, and how to go about putting this friendship back together again. I sat here most of the evening trying to type and swipe at my eyes at the same time. It seems the harder I try, the more of a mess I make. We had decided to try to spend more time with each other when he abruptly had to leave. This always makes me feel real special.

Today I had another friend that was hurting. I tried my best to do the "right thing" even though it hurt like hell for me to do it. I opened myself up, and showed my feelings. Something I try not to do, I just end up getting hurt in the end. But, I did it because I thought it might help my friend to understand my reasoning. Tonight I saw my friend come online. I messaged him and asked if he was feeling any better. He said no. I felt bad that I hadn't been able to help him, and felt that maybe what i'd said this afternoon had hurt, rather than helped. I apologized to him.

The responce I got was something to the effect.."I hope you don't take this wrong, but if you think everything is your fault, then you must think that the world revolves around you....It doesn't." I'm not really sure how I was supposed to take that. It felt like a slap, but then I know I do tend to wear my feelings on my sleeve. Not a really good thing to do. I just responded with an "O K", not knowing what else to say to that. So, all in all this has been a pretty shitty day. I sure hope it gets better and not worse. I'm not sure I can take many more like this one.

Jan. 16, 1998

When I began to think of keeping a journal, my main goal was for people to get to know me better. What my life was like. What my joys and sorrows were. Who the people were in my life that gave me peace, brought me comfort, and made me whole. What makes me tick. The only way I know how to achieve this goal, is to open my life up for inspection. Allow you, the reader to see my life through my eyes. Secretly I'd also hoped that my journal would be able to speak to people. What I hoped it would say is that we (people living with FMS and/or CFIDS) need to have your understanding. The only way I know how to do that, is to allow you entry into what my life is like. I had hoped that by understanding what these diseases do to us/me, you might gain a better sence of what makes up my life. I have always been a believer that it's not what we do know that scares us, rather, it's what we don't know. Knowledge has always given me an inner peace.

When I was diagnosed with FMS, I read everything I could find. I wanted to learn everything about this disease, so that I could understand it, and know what was in store for me. When I got online I had the opportunity to meet many people with these diseases. To talk to them, share with them, and commiserate with them. Through them, I found out that many of the things I've experienced over the last 19 years is not unusual, but a part of the process. I've received many letters over the last year that I've had websites. Most of my letters come from fellow sufferers. All say how nice it is to know that they are not alone out here.

What may seem like a "Pity Party for Misty"...as I've been told....is not how I had hoped you, the reader perceived me. What I had hoped you would walk away with, is a better understanding of just what FMS and CFIDS does to a person. I'm sure, as it's been pointed out to me, that for most people my journal is nothing but a bunch of self pitty. Ok, we are all entitled to our own opinions, that's what makes this country so wonderful. I'm reminded of a line from a movie I saw once...don't ask me the name of the movie, it's gone forever. But the line went something like this: "If you know me, and don't like me, fine. But, if you don't know me, and don't like me, that's a damn shame." What I'm trying to say I guess, is don't judge me until you've lived my life.

I would really appreciate some input from you. If you think this journal is a huge waste of net space, if you like reading it, if it's helped you, anything you want to say. Right now I would just love some sort of input. Thanks.

Jan. 17, 1998

As I was waking this morning, I was actually smiling. I'm happy to say that I spent the greater portion of my evening, and my early morning, chatting with my friend James. I'm also happy to say that we were able to work things out, and now we are resuming our friendship. It's been a long week without him, and I'm so glad he's back. It's not often that I meet people that understand me so well. In the 18 months I've been online, I've only met three people. These three people are the ones I turn to in my time of need. Each one of them possesses a special quality all their own.

Jausten's special quality is her caring for other people. She and I both live with FMS, and through her I've gotten so much comfort. She's also shared a part of herself with me that I know is reserved for only her most special friends. She is like a big sister to me and I love her very much.

Dave is the friend I seek out when I want the cold brutal truth. (lol) He has a terrific head on his shoulders, and knows what makes me tick more than anyone. He's able to council me when I'm in need of an honest ear. He will never tell me what I want to hear, but rather what I need to hear on any given occasion. I think what's so special about Dave is that while he is doing this, his concern for my feelings is at the forefront.

Last but certainly not least is James. I can't say enough things about James. He's quite possibly the best friend I've ever had. He has so many good and special qualities that it's impossible to name them all. He is someone I turn to for almost everything. He's a good listener, a caring person, and he always knows what to say or do to make me smile.

For awhile I seemed to falter on my course, and doubt myself and my feelings. Unbeknownst to Jausten, she has been a big help to me these last few days. Now that I know what it is I want out of my life, I hope to be able to move forward. I do know that I'm happier today than I've been in quite some time, and I have my friends to thank for that.

Jan. 18, 1998

Well, here it is Sunday already. Seems like the weekends go faster every week. I'd like to say I've done all sorts of constructive things today...not so. Today has been my day to just veg out and have some fun. I spent several hours talking to James this morning. God, what a great time we had. He'd found a link to a really neat place that has everything you've ever wanted to know about horoscopes. He and I seem to share an interest in that as well. So, we had each other's reading done. We started reading his reading first. As I sat here I kept thinking, yup, that's James alright. (lol) Then we read mine. He kept messaging me..."That's you alright" (lol) Usually these things never seem to surprise me, I've always thought I knew myself well. There was however one part in there that I didn't think described me, but James SWORE that it did. (lol) Do I really have a "me first attitude"? lol Nawww, can't be ME.

After my chat with James I decided to visit all of the members of the latest club I've joined....Diva's of the Net. I had NO idea how many members there where! Whew! I got through about a quarter of them when I was just couldn't surf one more site. I've decided to continue this at another time, and hopefully before I die I'll be able to say I've visted them all.

I had a really nice chat with Dave last night. He is probably one of the best woodworkers I've ever known. His website (Dave's Woodshop) is just packed with items he has made, and it's a deffinite must see if you enjoy fine furniture. He is in the process of making the most gorgeous pen and pencil sets you've ever laid eyes on. After talking to him last night it dawned on me what great gifts these would make for my family members!!

As I'm writing this I'm being messaged by another friend Dave. What a nut this man is, and what a great friend too. I've known him forever, and he's always been able to crack me up. Then there is that sexy voice of his too...watch out women!!....it's potent! (lol) We are sending the sickest messages back and forth, and I'm not sure who's laughing the most. As Pres would say..."oh no, she's in her manic phase, watch out!".

Jan. 20, 1998

Yesterday was such a frantic day, I never did get around to doing an entry. Since I had been up the entire night before being sick to my stomach, and fighting a migraine, I'd only gotten 2 hours of sleep. I'd gotten online when I got home last night. I took care of my mail, then got offline and went to dinner. When we'd returned from dinner I wasn't able to get into Win95. I tried and tried but I couldn't get the computer to get out of the "start-up" mode. I called Pres in, he played with it for an hour and said it needed some major work. He'd take care of it today he said.

Since Pres said he'd probably need to completely reformat the computer, we'd loose everything that wasn't saved. I started saving everything I could. I also sent off a note to our friends, in the event we were offline longer than we'd hoped.

When I'd woken up this morning, I saw a note that Pres had left for me on the keyboard. (where else would you leave me a note? lol) He said he thought he had our problems solved and he would talk to me about it when he gets home tonight. To say I'd be lost without this computer is an understatement. I'd tried to amuse myself last night by watching a movie, but it was lousy. Although the movie did have a few good moments, overall I thought it was a flop. The movie was "Michael". Once I'd finished watching the movie, I gave the computer one more try. That's when I was able to get back online.

Today the computer is working fine..go figure. I'll keep my fingers crossed. With such a lousy day yesterday, my morning has totally made up for it. I woke up, got online and recieved a message from a friend. I've done some graphic work for him, and he wanted me to see his newest page. I went to his website. I sat here looking at the graphic I'd worked on last night till 2 am. What I hadn't expected to see was that the page was partly dedicated to me, and partly to my best friend Jausten. I sat here with tears in my eyes, happy ones for a change, and read. I was so touched that he would do such a thing. To me, friends like him are what makes life so complete. Thank you Dave! (aka 11Bravovet)

Jan. 21, 1998

This has been one long and exhausting day for me. Today being Wednesday, I spent it at my Mom's. We'd attended a class on making "Memory Books" this morning. For those of you who don't know what this is (don't feel bad, I just found out), memory books are basically a glorified photo album. The main difference being with a memory book, everything is acid free. Thus making the memory book last forever. Another difference is that with a memory book, you embellish your photos. You can do this by cutting your photos into shapes and then pasting them on a colored bckground, etc. The woman who taught the class was very fun to listen to, and she had some great examples of her ideas. I'm so excited I can hardly wait till Friday to begin making my own memory book. Although I enjoyed the class immensely, sitting in my wheelchair was killing me. Take into account the temperature in the room was very cold and I have a potential pain spell ahead of me. As hard as I try, I just can not get comfortable sitting in my wheelchair. If I'm at the computer, I have a very soft chair with a high back on it to support my neck and shoulders. Still it kills me to spend any great amount of time in this chair.

After we'd had lunch, I took my Mother home and prepared to pick Pres up at work. I had an appointment this afternoon with a lawyer to discuss my appeal to the Social Security Administration. I'd taken everything I could think of to take. He seemd like a nice man, and seemed to think I might have a chance. I remember very little of the hour and a half we were there. Mainly because all the while we were there I was having one massive panic attack after another. I was also in a great deal of pain sitting in my wheelchair. I kept trying to find a semi comfortable position, but I never did. At one point the lawyer asked if I'd be more comfortable on the floor, and if so to go for it. I probably would have felt better for all of 5 minutes, then there would be the effort of getting up OFF the floor. I decided to just stay put and hope it would be over soon. When we left the office, the fatigue hit me like a brick. I had all I could do to function.

I said something to Pres about how terribly tired I was all of a sudden. He said he wasn't surprised since I'd been so stressed out. I told him I'd had 10 panic attacks in the time we'd been in the office. He looked at me and said, "You know, I never know when you're having one. I do know that your memory was worse than usual this afternoon, that should have tipped me off." I said it should have. It takes all of my concentration to keep "it" together when I'm suffering an attack. Since my concentration skills suffer due to the FMS, it's no wonder that I can only concentrate on one thing at a time. I refuse to loose it in front of people. In fact that's one of my biggest fears, I'll have an attack so bad that it'll show and people will think less of me. Silly I know, but very real to me.

I dropped Pres back off at work and drove home. By the time I pulled into the garage I had all I could do to get out of the car and into the house. I made it as far as the couch and crashed. The next thing I know the phone was ringing and Pres said he was heading home. I've got quite a bit to keep me busy for the next few days. In order to have any hopes of winning my case I need to prove I was disabled prior to Dec. of '93. I'm hoping to get my doctor to help me, as well as my former doctor and pretty much anyone who'll vouch I was a mess then too. I also have more forms to fill out. I asked my lawyer today what I could expect, and he said I'll probably be denied on my appeal too. After that happens the next step is going before a judge in a formal hearing. I dread this part.

As stupid as it sounds, I cried all the way home today. It seems most of my life I've been fighting for something. No matter how hard I try, and how many people I try to persuade, I still feel like I have to justify myself. At first it was family members, trying to make them believe what I was suffering from was real. Then it was the doctors, trying to make them understand what I had was very real. Now it's the Social Security Administration. As I'm writing this entry, the phone rings. I answer it and it's my attorney. I'd mentioned to him today that I had a few websites. He was calling to ask if the address I gave him was correct. I ended up giving him the address to my FMS/CFIDS information site. It impresses me that he would bother to look at it.

Jan. 26, 1998

It's been a few days since I've done this, I hope I can still remember how. I've not written for any number of reasons. One reason is my state of mine lately. Another reason is we've been having computer problems. Still another reason is I've just not had anything to say I guess. I'm still not sure I have anything to say, but I'm here reguardless.

My friend Jausten said in her journal, (when referring about me) that she thought if I could focus my energy into figuring out what makes me mad, I might be able to get over my depression. I'm not really sure I'm mad about anything. The feeling I have is more like the fuse at the begining of the Mission Impossible TV show. You see it burning across the screen, you know eventually it's going to blow, it's just a matter of time. THAT is how I feel.

I spent a pleasant hour talking to James tonight. We discussed my state of mind, (for probably the 3rd time in as many days). He's been worried about me, as has Jausten and Dave. All three of them have been very concerned to say the least. As has a new friend Don, (from PA). I know I am fortunate to have people that love me, and care what happens to me. James was able to do what few have been able to do lately, get me to actually laugh. For an hour I was able to forget the things that have been piling up in my life, and just have some fun. Unfortunately, when the call ended, so did my mood.

I guess introspective is more my mood now than depressed. Although I can't say it'll stay this way. Maybe if I were able to remove the things from my life that make me miserable I could be happier. That's not possible. I can't pretend I feel good when the pain is unbearble. I can't pretend to be happy when every new day seems to bring one more thing I can no longer do. I can't pretend to be happy when my responcibilities never lessen. And I can't be happy when my stress levels are at their breaking point.

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