Gratitudinally Speaking

[DaBee]

A little off the beaten path, but, if you build it they will come.....or something like that. Thank you to the owners of this board.
Seems that there are quite a few people that read this BBS from around the Eureka area and probably much farther out than I even have an inkling about, that share similar life lessons. If anyone is interested in gathering to discuss life altering illness, chronic pain, high mountains to climb or maybe even just completed a long journey into a world of illness and back, or even to lend a sweet word to others, well, let's talk. Maybe the 1st thing to do is to use this forum to just discuss where we are in our life walk. It could just start here and keep going as long as we want it to. Or not. Or go somewhere else.
I am feeling gratitude for the ability and the freedom to speak my truth and share with others./deb

[mls1271]

Deb, I think that is a great idea. I am deally with a lot of difficult health issues and would love to have people to talk with. I have been in a group therapy class at OGC, but I may be having to stop that class. I am a single 32 year old mother of two great children. In March of 2003 I began having seizures. The are not real seizures though. They are pyschogenic seizures. I also have fibromylgia and polymyalgia. Most people around do not understand them. I can not drive, work, or sometimes not even care for my children. I am lucky though because I have a wonderful, awesome family and friend support group. I think that everyone could have somebody to talk to. My email is mls_1271@yahoo.com if anyone want to email me about getting together to talk or just using email or this message board to dicuss what is going on in our health and life issues. Thank you all so much!/Missie

[DaBee]

So good to hear from you, Missie. Got home from the med school in Little Rock a few hours ago and I'm pooped, so won't be long winded tonight. Just want to acknowledge you and let you know that I'm not familiar with some of your medical difficulties, but am going to research them a bit so maybe I'll get an idea about what's going on. Sure sounds like it has been quite life altering, but still you're hanging in there doing all that you can. Having 2 children is a blessing and also having the family support is so very important. Was wondering if you live in Eureka and if you've been staying in touch with Geekfest for a while. There are a lot of very compassionate, caring individuals that are here from time to time and it's strange that you can feel like you know them without actually ever even meeting them in person. Yet, a sharing seems easy and maybe it's just because they are honest and really do care and it shines through like a soft light. Stay in touch and I will also.
namaste/deb

[Shimaka]

Greetings Deb & Missie,

Deb, how good of you to move our continuing thread here to the gratitude journal. I'm sure everyone will find their way. Missie, welcome, though you may have been here longer than I have. I say welcome just because a number of us were getting to know one another on a thread in the open forum with this same intent, sharing with others of like mind and getting to know others who can understand those life-altering experiences that we've gone through. I have lived in Eureka Springs for 10 years now though I must admit, it seems like yesterday that I pulled out of Colorado with my then-partner and left our home and the corporate jobs behind, along with a whole lot of bigots, to come to Arkansas (of all places). LOL It seems that one thing after another has changed and altered ever since I set foot in Eureka. I'll admit that, sometimes, I think about going back to where I came from, but that's not going to change anything back. So, I may as well stay where I've learned to love a whole lot of people. http://www.geekfest.com/ubb/smile.gif

Missie, I know of most of the medical conditions of which you speak, except one - polymyalgia. I can infer a lot from the name, but other than that, I know nothing of this condition. I can imagine, however, given the rest of what you're dealing with, that all of this together has been quite life-altering for you. Thank the powers that be for a loving, supportive family!

I am very familiar with seizures as I had incontrolled seizures for more than ten years. I will have to disagree with you on one statement. Psychogenic seizures are just as real as any other kind, and certainly, YOU know that from having them. There are so many kinds of seizures that most people don't even know about that I can see why you might preface it that way, but please, don't do yourself the disservice of making it sound unreal because it's not. Your suffering is as real as any person with seizures, no matter what type they have.

I was on the state BOD of the Colorado Epilepsy Foundation for three years, and I remember many times, sitting in the office and working on one project or another, overhearing conversations between clients who would try to make light of their "kind" of seizures because no one knows much about anything other than the traditionally known generalized tonic-clonic or "grand mal" by the old name. Absence of "petit mal" seizures, clients would almost be embarrassed to admit they had because some felt guilty for using the same services as some of those who had the BIG ones.

Sorry to get off on that subject. I just heard it so many times. I want you to feel supported, and here I am, arguing with you. I apologize if I offended you. I just want you to know that I realize your suffering is as real as anyone else's.

My own medical story is pretty jumbled, actually. Currently, if you've seen someone getting in and out of a maroon 1993 Dodge Grand Caravan ES and TRYING (I mean that sincerely) to access her own wheelchair before getting into it, that would be me. I realize there are other people who have done this themselves, and I'm finding I'm not as strong as they are. Given I've been an athlete most of my life, that surprises me, but it's true. I found out in the middle of 2000, when I discovered I had over 200 blood clots in just the thigh portion of my right leg, that I have three genetic predispositions to clotting. Though I was put on Coumadin in the hospital and not allowed to leave until my blood levels were therapeutic, I had six more DVTs (blood clotting incidences) in the next six months. That has much to do with what's wrong with my right leg as all of those were in that same leg, which I'm finding out is NOT all that unusual. I also have degenerative joint disease in my right knee that is pretty severe, and a knee replacement isn't doable due to the clotting problem. Also, a Baker's Cyst behind my knee keeps me honest if nothing else does. I get reminded quite often that my right leg doesn't like me much. http://www.geekfest.com/ubb/wink.gif

There are other things, enough to more than fill my Medic Alert card to the point where they no longer put anything on it other than my name and number and a big, bold "there is a lot of medical information on file; please call 1-800-XXX_XXXX". Hehehe, I'll admit that, at 50, I didn't think I'd be completely falling apart at the seams, but it at least appears that way.

So much for me. I get bored talking about it because, as much as it has absolutely turned my life into something so completely different from what I recognize that there are times I don't even feel like the same person, I also get tired of thinking about the specifics.

Deb, I hope your trip to the medical school was fruitful and not too tiring and that you got some answers that lead to relief. That's what I wish for all of us - relief.

Good night, ladies. I'm tired, and at the moment, my hands are hurting, and I'm kinda tired of listening to myself talk. LOL That happens a lot more often than I'll admit.

Blessings to you both.

Namaste!
Shimaka

[Jeannie Jones]

Well, I have much gratitude to you, Ms. Deb, for opening up this location. Ooh, it feels good over here! http://www.geekfest.com/ubb/smile.gif I had been awaiting your return to your home, and to the other thread.

Missie, I was going to say the same thing as Shimaka, that although your seizures are of psychogenic origin, your body IS having them, for real. Also, of course I know of fibro, but did not know of polymyalgia.

It's a great accomplishment to be able to care for your children with such serious medical conditions. It's good that you have good help from family and friends, but sometimes there are things that you need to talk about, that you don't want to bring to your loved ones. If you're needing to withdraw from your group therapy, perhaps you might find some support here to fill that need. I mean, we can try, anyway. http://www.geekfest.com/ubb/smile.gif

Shimaka, thanks for further explanation of your knee situation. Girl, what a load you pull daily! I'm sure you've had many "down" moments in your travails, but here you are, determined to go ahead and achieve and accomplish.

Love you, ladies, but I'm about cross-eyed from being all day on the computer, so I'm needing to close.

Thanks again, Deb, for leading us here. I never explored this side--got so caught up in the other place.

Loving blessings,

Jeannie

[mls1271]

Thank you ladies for your support. I guess I said something I did not mean to say, because I do know my seizures are real, believe me I can feel the pain so much, but it is my subconsouis that triggers them to occur.
Shimaka, I know that you know who I am. I am Missie that worked for Dr. Bell's office for several years and then the Arvest Bank. I guess I did not realize how bad your legs had gotten. I know you will keep your head up high and hopefully we will all be able to support each other.
Deb, I am glad you got back from your trip ok.
My group therapy is actually stopping all together next week. So I guess I do not have to quite because they are doing away with the group. So that makes me feel a little less quilty about stopping it. I do not like to give up....and you never know what might actually be working for you.
Anyway ladies I again want to thank you for the support and look forward to getting to know you all better.
Have a great week-end! Missie

[DaBee]

Missie, are you able to request that you be in another group if that is what you feel is needed? I know that OGC has several different types of groups going at the same time and it seems that you could ask to continue in another group.
Was reading about polymyalgia. I had never heard of it before and it is quite entailed and seems that it has differing levels of effects and in different parts of the body, but especially the upper shoulders, neck and forehead.
My doc doesn't believe in fibromyalgia, so what I have is, for one diagnosis, rheumatoid arthritis. That is also a disease that effects different people in different ways. The problem that I'm having with it medically is the drug that they're treating it with is being titrated up, but the sed rate is also going up when it should be going down. That tells how much inflammation is in the body. I really do think that I have the fibromyalgia because of the deep pain upon any movement in not only my joints, but muscles too.
I am going to read about psychogenic seizures because I am also clueless about them. For 10 years I worked with clients that had varying levels of seizure activity, all from epilepsy. Was so close to them that I knew when they were experiencing an aura, just prior to seizing. Would clear an area quickly and ease them into a comfortable position on the floor, all the time talking and soothing them. Some people were hit out of the blue and down they would go. I remember how exhausted they would be and have to sleep for many hours to recuperate. Then, every muscle in their body would ache. As the years went by, medications improved and many people were managed much better. My baby sister also has "grand mal" (tonic/clonic) seizures and loses days when they happen. It also seems that she is managed quite well unless under stress either otherwise medically or emotionally. She has been diagnosed with MS and Crones Disease. It's the MS flares that seem to induce the really bad seizures.
Anyway, I will read more on the psychogenic ones.
Great to hear from you Shimaka and Jeannie. If any of you just peeking in to see what this is all about have a desire to speak out about your experience in this very human area, please join us. I have an idea about us getting together, like in the real world (what and where is real though? http://www.geekfest.com/ubb/wink.gif ). I'm hoping that all of the people that were a part of the discussion on the Open thread would join in here. However Spirit is leading is how it will manifest (oh boy, another one of my humble opinions http://www.geekfest.com/ubb/rolleyes.gif )
latery'all/deb

[Jeannie Jones]

Hi, folks,

Did the "big shopping" at Wal-Mart today. I'm just feeling totally played out and feel that I lifted things that are too heavy. I get a 12-pack of 24-oz. water bottles, I find a guy or wait til someone comes to that aisle, and ask him to get it down for me, into the cart. That's the last thing I get, because it's so hard to push the cart with the water in it.

Mom (84-y/o) gets a motorized cart, and she just u-turns in the middle of an aisle and just clips along like crazy! She usually ends up losing me a few times, so I really get my exercise prowling aisle after aisle looking for her.

So anyway, we leave the heavy things in the cart for the check-out person to scan, and ask for assistance to the car. When we get home, I take the light bags in, MOM takes the heavy stuff (!) and I take the scissors out and cut up the water 12-pack, and bring it in in Wal-Mart bags, 2 bottles at a time in each bag. That even feels like too much, but I just want to get it DONE and don't want to take 6 trips to do it, or ask Mom--she already does enough.

Well, I hadn't planned on going into the boring details of our shopping trip, but just to say "hi" and glad to see this thread still active, love y'all, and maybe tomorrow I'll be able to write about something more than shopping at Wal-Mart!

Love and appreciation,

Jeannie

[Shimaka]

Ah Missie, thank you. 'Tis nice to put a face with a name and know who I'm talking with. Yes, I, too, hope we can all support one another, if not here, then we will find somewhere appropriate. Deb was kind enough to move this thread from the open forum where it was quickly disintegrating so I am glad she saw the right time and just followed spirit to where we are now. Who knows where we'll end up? At least now we all know each other, and if need be, we can contact one another through email to set up whatever we need to.

Missie, does this mean you, too, are no longer able to work? I do think that is the most frustrating part of having a chronic, degenerative problem, especially if anyone around you doesn't quite "get" it, and you spend time and effort having to explain yourself.

Actually, sad though true as it is, I've had to leave the clinic and BOTH doctors to go to the clinic in Berryville in order to actually have someone treat me who pays attention and isn't treatint me like a hypochondriac. I also think that the clinic in Eureka is so busy, and has gotten so many orders coming down from on high that they have ceased being able to treat anyone who has any problem beyond what ten minutes can fix. I transferred my medical care from Little Rock back up to Eureka, and went with Greg because he had mostly treated me in the hospital for the clotting incidences I had, but that turned out to not be a very good idea for reasons I'd best not state on a bulletin board where other people have access. Best left to private communication.

Missie, I don't know what your personal situation is like, but do you have support at home? Do the people around you know enough about your condition, and care enough, to want to back you up when you need it? These are SO important, especially when you're prone to fall into unconsciousness at the drop of a hat. I realize I'm not the healthiest person myself, but I'd be happy to be on your list of people to call when you need someone to be with you. I know what it's like to be there, and though I haven't taken any meds for seizures for a long time, I do occasionally still have a breakthrough seizures when I'm severely stressed. After my breakup with my partner 8 years ago, I went through over a year of one after another after another, and actually thought of finding a neurologist here and going back through all that process of finding what meds would work best. Scared me half to death to even think about it, but I did. Fortunately, as time passed, and grief and mourning healed, so did the seizures. Guess it means I'll always be prone, but if I can find a way to behave myself and not get stressed (yeah, right!), then I won't have to worry about it.

Deb, have you recovered from your long trip back and forth to LR yesterday, and how are you feeling? I just can't help but remember what that trip back and forth felt like, and I know it can just drain you forEVER, it seems. I hope you rested well and are feeling a might better today.

Jeannie, I'm so glad you found your way over to us. I knew you would, even if no one wrote to you directly, but I think Deb was getting ready to do that. You are such a comforting presence to have around, and I'm glad that you're here. ;)

As I told Deb last night, if we want to set up something a little more private so that we don't have to be concerned with folks just peeking in for curiosity's sake and never knowing who it is that knows all our business, there are plenty of ways to accomplish that, and I'd be happy to set up any of them that you'd like. It's always nice to know that geek talent still comes in handy even though I can't work at it full, or even part-time anymore. So, I set up email lists and private forums, and moderate bulletin boards and do Websits, just to keep my fingers in the biz still.

Guess I'll sign off as I'm really tired tonight. One thing that has been a constant struggle is insomnia, and then, when my body can no longer stand being awake, I just crash and burn. Did it for 20 hours yesterday, and another 8 today - this afternoon. And now, I'm ready to sleep again. Damn! That's what I get for having spent most of the week not sleeping at all.

Missie, remember what I said about being there for you if you need someone to call. I don't make the offer lightly, okay? http://www.geekfest.com/ubb/smile.gif And, that goes for any of you if you're in a situation where you need someone. If we're going to be support for one another, then I consider that part of support if someone needs it. Okay?

Thinking fondly of all of you, glad to know who you are now, Missie http://www.geekfest.com/ubb/smile.gif, and looking forward to another day tomorrow. Guess I'd best go check a couple of places in the open forum to see if anyone has decided to have me for dinner tonight. LOL Sorry, that's what it feels like sometimes. Deb, thank you for that one question you asked today. I think you know which one I mean. http://www.geekfest.com/ubb/wink.gif

Hugz,
Shimaka

[mls1271]

Thank you all for taking the time to care in what is going on in my life. It means alot!!! The kids and I have moved back in with my mom and dad. They live upstairs and we live downstairs. It is a great set-up. My parents and my two sisters do understand my condition and we have all reserched it so much that we get a better concept of it all the time. My children are also great. I do not know when I am going to have a seizure at all. I can just fall over like a tree. I fall down stairs, on the concrete outside it seems like everywhere. I can not drive or work. I have had to file for disability and it takes forever. I carry a pillow with me all the time..lol to put under my head so I do not bang it up to bad. Of corse that is just the seizure part of it all. The fibro and poly just kill me too. It all mixed together is hard to deal with sometimes. I still see Dr. Bell. I guess since I worked for him for so many years, he really pays attention and has great bedside manners. He is trying everything he can to control everything. I have been to several neurologists and rhuemitologist(spelling) and they just send me back to Dr. Bell.
The depression and stress play a huge factor in my conditions.
Ok well enough about that for now. I would love to somehow meet in real life. It is great to be able to put faces with names.
Once again thank you all so much for your support. Have a great day and do not over do it!!!

[Shimaka]

Missie, do you mind if I ask if you've been able to get quality care of OGC? Care you're comfortable with? If you'd rather not answer that, I can understand that too. I have been very fortunate in that department because, even though my therapist left Eureka Springs less than a year after we began (and I never really thought it would take a year, much less longer!), she moved to Little Rock, which is where she had initially come from, and I would go down there to see her because I really didn't want to change therapists. It's hard enough to break them in. Changing them, and then having to break in a new one is harder than breaking in a new doctor, I think. http://www.geekfest.com/ubb/wink.gif Anyway, after awhile, we started alternating in-person appointments with phone appointments at my request. She was not at ALL sure this is something she would be able to be effective at because she is a very visual person, and she felt she had to "see' someone in order to really be able to use her skills at figuring out where a person really was - if they were being straight with her, or lying, or trying to cover stuff up, or whatever. She got a very pleasant surprise after giving in ONLY because I'm very auditory, and I was the one who was supposed to be benefiting. I'm so glad she gave it a shot because she is really quite good at phone appointments. I swear sometimes that the woman reminds me of my mother. LOL We'll be in the middle of something, and out of the blue, she'll say, "Phyl, uncross your legs and sit up straight." Hehehehe, and she is NEVER wrong. So, she got to find out that she has this skill she didn't know about before so . . . (here comes the good part) . . . when she moved to Anchorage - yes, that's right, the frozen tundra of Alaska, it meant that I didn't have to change therapists at all. She is still registered in Arkansas, and because of her experience with me, she has tried phone appointments with a number of her other Little Rock clients and found that they all work out pretty well. So, I feel like, in a way, I helped her find a gift she had that allowed her to continue to make a living all the while she was building up a local client base there, and now, even though she has a thriving clientèle in Anchorage, she has one day/week set aside for her LR clients, and spends that day on the phone. We call her. http://www.geekfest.com/ubb/wink.gif It may not make a big difference to most people, but after going through as much as we did to get to a point of trust for me, and a place where she knew me so well, I just wasn't willing to compromise and try someone who might not be as good, and I also didn't want to have to go through all that beginning stuff again. It's just too painful. I hope you are able to find someone you feel good about long-term because we all need that kind of support when dealing with chronic illness, especially multiple chronic illnesses. If there's one thing I remember so very well about having seizures, and in a way, I still deal with it, there's such a loss of control you feel because you really don't have a clue when you whole day is just going to be shot to hell, or when/if you might be out with friends somewhere and just have a seizure happen. I know it gets frustrating, and my hope and wish for you is that the perfect person shows up that can be your professional support, that you feel you can trust, and if you need to add medication to your seizures and fibro, etc. medication, then you can get that all balanced out so you feel comfortable with it. One thing that is exceptionally good is that many of the medications they might give you for anxiety are also anti-seizure drugs in one way or another so sometimes, you get lucky and get double play out of them.

Sorry, I really got off on a tangent there. I am so glad for you, Missie, that your family understands and has studied up on their own even, and are there for you. That's wonderful! I'm very sorry that you have no warning. Perhaps with time, one of two things will happen, and we'll just have to address the angels on this one - either they will go away OR you will develop an aura. I'm not saying they WILL happen. I'm saying perhaps one or the other will happen. You may already have an aura yet haven't had enough experience yet to know what it is. At least if that happens, you'll know you have enough time to hit the deck, so to speak, or lie down on the couch or bed or wherever you are. I'm sure not being able to drive had made a huge dent in your ability to feel independent, and I'm so sorry that has happened to you. We all pray that all of us at some point can get to a point of feeling like we're comfortable with the place we are at. That's actually why I started therapy, to gain some resources to be able to deal with my disability. What I didn't realize at the time is that I also had Post-traumatic stress disorder which was really messing up my head combined with everything else that was going on. Thank God for therapists with heart!

Jeannie, how are you doing on the transportation front? I know that you and I first connected when you were trying to find a way to come to the next geekfest gathering, and I think of you often in that regard. You do know that I'd be willing to come and get you if you don't have a way, don't you? And, if it's a late night, and you decide you'd rather stay over, that can always be arranged. Heck, both of those apply whether it's a geekfest gathering or not, okay? Missie, I know you're local and can probably get a family member to take you if you want, but if you ever need a ride, let me know too, okay?

Deb, have we ever talked about your transportation situation? Can you drive at all? How do you get around? Heck, I'm a great chauffeur so just call me James, but do CALL if you need me, okay? LOL

Are you all rested up from Friday yet, Deb? Oh, btw, did you notice where I used you as an example in that response in the open forum? I figured you did since I noticed your one question that I thanked you for yesterday, but I did want to ask you about it and see how you felt about that, and if that was okay to do. That whole situation had me so frustrated I was about to throw someone across the room, which in my condition, would be a really blatant miracle {G}, but it hasn't stopped me from feeling that way anyway.

Ladies, thank you for allowing me to go on and on and on. You've been most gracious to not tell me to please shut up already. I'll be the first to admit that I have no talent for brevity despite being a journalist by first trade, but then, I never write anything short. Maybe that's why I can't write short posts either. LOL Anyway, thank you for your patience with me. I figure God isn't finished with me yet. http://www.geekfest.com/ubb/wink.gif

Go carefully, my friends, and have a lovely Sunday!

Love and hugz,
Shimaka

[DaBee]

I would never tell you to shut up, Shimaka. Also, it did not bother me at all that you used me as an example. I saw your frustration in the thread that you're referring to. I do wonder at times why you continue on when some people are so rude. The one statement telling you to quit referring to your physical problems really made my hair stand on end. It obviously came from someone that has no clue. There is a lacking of respect for others so often that I just have to look away when cutting statements are made. It seems that I am becoming more thin skinned as my time moves forward. The written word can be so beautiful and soothing and even healing. This may be boring to some, but Xcesses have dulled the taste buds and, seems, the ability to maintain decorum. Know that I love a good verbal/written tennis match (of sorts)as I am as onery and even at times as quick witted as ever, but just as a good debate has guidelines, so does interactions with others. I guess on this BBS, the lines are drawn much farther out, given our freedom of speech. I'm not going to be able to change, nor do I want to, the way people treat each other. The world is unfolding exactly the way it is suppose to and I have no right to even attempt to interfere. I do have the right to speak my mind, and for that I am feeling gratitude.
You are so kind, Shimaka, to offer transportation and your time to others. I drive still, though some days I know better. Don't handle congested traffic, long drives or night driving well. There is NO WAY that I would attempt to drive into Eureka on Blues Fest Weekend. Also, think I've had enough Blues and Jazz Fests to last me many lifetimes. They're a lot different now than they used to be. Think that's because of all of the motorcycles. The noise is deafening to me. It actually hurts my ears and my psyche.
The Little Rock trip, which is going to the U of A Med School, has wiped me out for 2 days. Did find that I will be having hand surgery on July 1st. It's like carpal tunnel surgery and should help to have feeling come back into my hands and also relieve some of the pain. They can't do surgery on the bones and ligaments that are causing the the majority of the pain though. Will still have to wear splints to help with that. Won't be able to drive or do much for 2 weeks, but it'll be ok in that I have family close by to assist.
My Rheumy Doc will not even look at my neck and lower back which is where the majority of the debilitating pain is from. I used to walk several miles every morning, but haven't been able to in a couple of months now. Spinal arthritis, I guess, is just something that you live with. She said that the treatment would be the same, which is the Methotrexate med that I am taking. Am thinking about going back to a chiropractor that I have a lot of confidence in. Don't have insurance, so have to be careful with expenditures though. Ok, that's about enough about me.
Sure am enjoying this thread. So glad that you are here, Missie. Is it your family that had (has?) the float service down Rock House Road? Are you the teacher in the family? I get people mixed up a lot, so forgive me if I have done this in your case. You don't know me, but seems that the 1st time I took my son (who is your age)on a canoe trip, David (your Dad?) rented us the canoe. That was 10+ years ago and we had a blast!
Here's hoping that everyone is having a great Sunday. What a beautiful day in the Ozarks!
Hi Jeannie and here's to hoping that you and your Mom don't have to go back to the World of Wally any time soon. Feels like I always have to be reprogrammed when I'm in there for more than an hour. I look like this when I come out: http://www.geekfest.com/ubb/biggrin.gif: and http://www.geekfest.com/ubb/eek.gif combined http://www.geekfest.com/ubb/wink.gif
latergaters/deb

[DaBee]

Such a beautiful day today, I recognize that, but there has been so much pain to deal with that it feels like I've seen the day only through squinted eyes. I feel a need to sleep and sleep, but even that escape is being intruded on by dreams of pain or some type of barrier to whatever state it is that no pain is felt.
I've looked at all of the sites suggested, but guess reading isn't making me feel any better. I go to my Rheumy doc on the 22nd and am going to ask about a pain management referral. The last time I asked her for help she gave me a script for Mobic and had it filled.....$120.00 and I had to refuse it because I sure didn't have the money. In asking her for Darvocette N100 she said that she could not prescribe that. My son is going to go in to the exam room with me next time so that maybe she will HEAR me. I'm not adverse to using a gender trick....anything that will help is okedoke in my book.
Like you told me one time, Shimaka, I'm just going on like I'm journaling. Sometimes it can even help others when they see that someone maybe is having a hard time like they are. Also, I'm sure that others have gone through days like this and would like to share. If I'm able to type and be fairly coherent, guess I'm not in too bad a shape. Then again, think that I've about done as much of this as I can handle. latergaters/deb

[Jeannie Jones]

Oh, maaaaaaan! I just wrote a whole long post and lost it. Well, I guess that's not what I was supposed to send. Welllllll, one problem seems to be that I have something in mind when I start out, then I forget for sure what was said. Then I go back to the board to reread all the posts, then come back here and lose what I've started, no matter what route I take. Sigh.

Y'know, Deb, I did sit here in my room with that negative ionizer thing going for 2 whole days. Finally I turned it off forever. The air did feel kind of--I dunno--crispy. Probably destroyed more brain cells.

Y'know, Shimaka, I love the idea of having our own BBS. It's generous of you to offer your services in that way. Thanks, also, for the transportation and hosting offers.

Deb, when we knew each other so long ago, who would have thought that we'd reconnect in this way! "Synchronicity is God's calling card." Love it. Hand surgery--big stuff. When is it scheduled? If you said that above, kindly disregard the question. http://www.geekfest.com/ubb/smile.gif Girl, your bright spirit has sure touched a lot of folk.

$120 for Mobic! It's slightly stronger than OTC pain relievers. Neurodoc gave me some samples and said 2 in AM, 2 in PM. It does help some, on top of my other meds. Don't know what your situation is, but have you checked out

www.themedicineprogram.com (http://www.themedicineprogram.com)

You may qualify for free meds, if you're not on another kind of program.

Missie, what is it that you want from a neurologist? Don't mean to be nosy, but you did say that they keep sending you back to Dr. Bell, and I'm just wondering what you're needing that they're not giving you? A proper diagnosis? Falling down w/o a moment's notice must require a lot of planning. (What an odd-sounding sentence!) Hope you always have someone with you. http://www.geekfest.com/ubb/smile.gif

I'm just so happy we have this little forum--it's like a warm, comforting hug, coming here.

Mom and I usually go out for Sunday dinner with our friend/neighbor, Avalee, and we took her to her favorite place, 'cause her birthday's Tuesday. She told me to dress up & make up because our friend Elmer would bring over his jazzy orange sports car and she'd photograph me in it with her digital camera. Elmer really wants to see me get together with my friend Steve, in CA, and said that he wouldn't be able to resist a photo of me in his jazzy car! He's so silly (in a fun way--you know what I mean).

So Elmer comes driving up in this totally new different kind of jazzy car that we'd never seen. I don't know how to describe it or remember what it's called, but it did some amazing tricks automatically opening & closing the top. So we did pictures, then over to Ave's (that's short A as in have, not long A as in Ava). We got to look at the pics there, then she e-mailed them to me.

While at Ave's, she wanted us to watch a video of a children's musical program she attended at her son's church a month or so ago. He lives in Chicago--they had a small congregation w/ a building, but not much money, and merged with a big congregation Philippino church with no building, but with lots of money. They love it, it's a great fit. Anyway, I saw on her computer that the film was 48 min. long, and I thought--oh, no, I can't DO this!

But I did it. It was delightful. There were 2 Philippino instruments, and other instruments, and the sound was so sweet and wonderful. The children were adorable, and ranged from quite small to early high school, I'd say.

By the time we got back home (I was dyin' for a smoke--yes, I'm a smoker) it was 4:30. Fed cats, changed clothes, checked BBS, checked mail, then finally at 6 it dawned on me that I hadn't taken any meds yet!

Well, Deb said above that she felt like she was kind of "journalizing" with this board, and I see I've done that with this post.

Well, love ya, gals, time for me to go. Hope you have a bright tomorrow, and I hope your pain eases up, Deb.

Til next time--

Jeannie

[This message has been edited by Jeannie Jones (edited 06-07-2004).]

[Shimaka]

I think we're all journaling in a way, Jeannie. And, I've always found journaling to be such a gift to me. Writing has always been my preferred mode of communication though it frustrates some folk when I would rather "work things out" or "talk things out" through email than on the phone. I just am more able to say what I want, and I suppose some would look at this as a shortcoming. I just look at it as that's the way I communicate best. I am easily intimidated by fast talkers who over talk me, which means I frequently can't get my point across so, if it's something important I want to discuss, I'll take the written word any ole time I can.

Deb, I want to thank you so VERY much for what you had to say in the beginning of your first post. You have no Earthly idea how much I needed to just HEAR that from someone. Now, here is one of those places where I'm not so comfortable being on a public forum, but . . . here goes. I've had to fight alligators to my armpits, physically, lately, and when I end up fighting alligators in other ways too, I end up with no spoons the next day, and I know it before I ever go to sleep. I suppose I could do, as many have suggested, and just LEAVE IT ALONE, ALREADY, but there are times when standing on one's principles is more important than personal comfort. I guess that is something I may have to rethink because my body doesn't agree with me as much as it used to. I'm quite sure there are a number of people who would be positively THRILLED if I adopted the attitude of "you're just not worth it!" and perhaps I will, after I've beat myself into the ground enough times. The one thread you are speaking of, I felt I had no choice but to respond though. By the time I saw it, they had already taken two full pages to diss me, and I hadn't had any chance to defend myself at all, or even offer a word of clarification. I have a feeling that at least some of the message may have gotten through as the thread stopped dead in its tracks pretty much once I posted. Actually, I was hoping SOMEone might have been ashamed of him/herself, but I think that's just wishful thinking.

And, you're right about the comment about my physical situation. But then, I'm looking at the source. Ever since the election, and I was either brave or stupid enough to actually take a stance on the issue, I've been public enemy #3 - James and Lucinda being #1 and #2. One would think that, once people have won, they would be happy and let it drop, but since that isn't happening, it just seems they must be completely mystified that so many people voted against their way of thinking that it came out nearly 50-50, and all the time since then has been spent in trying to find ways to paint the figures in a different light.

The same group has done their level best to try to destroy my bulletin board, Bridging the Gap. People coming on and searching through the archives for anything they can find and dredge up from God knows how long ago, and try to use it against me. Then, publicly making really crass and rude statements before demanding to be removed from the board. And now, hehe, sorry, I have to laugh, they have the 'nads to call me a bully for changing the board rules so that no one can just come by any ole time and use the archives as a weapon. You have to be registered and log in in order to have access to the board now, and that has really po'd some people off bigtime. Ahem, as my father was prone to say, if you're p*ssing off a lot of people, you must be doing something right. LOL

Anyway, I don't know that I have it in me anymore to be a political animal. I've been an activist most of my life, usually fighting for someone else's rights, and now, I'm going up against city council to fight (I hate using war terminology for these things, but that's the only language they give us to use - perhaps we need a new dictionary of political language) to get this town accessible so, at least for once, I'm fighting for something that will benefit me. I don't see where this should be a fight at all. According to the ADA, Eureka Springs, and every other American municipality, was supposed to have submitted their plan for making the city compliant with the ADA by 1993!!! We're just a tad behind. LOL I remember when the fight was going on at the time, and I was very vocal about getting curb cuts put in downtown (and I surely had no personal investment in it - just didn't want to see people in wheelchairs, walkers, even parents with baby strollers, have to fight to get from the street to the sidewalk. But, no, we couldn't do curb cuts. My God, you want us to take away our Victorian authenticity!!!!! You'd think I had asked them to pave the streets, put in flush toilets, dump the cobblestone, and get rid of the street lamps and lamplighters! http://www.geekfest.com/ubb/biggrin.gif

I apologize, ladies. I just realized this sounds more like a post that belongs in the open forum than here. Mea culpa, mea culpa. For me, I was venting to friends who understand my physical situation, and whom I feel I can trust (which is a big issue for me so thank you for being women I CAN trust), but I can see why someone else might think I was just going on with the political fight. sigh.

Deb, I am so sorry that you are still wiped out from the trip to LR. That's another of those things that's much easier if shared, my friend, so, if you find yourself having to make the trip alone, please don't hesitate to call me. I'll be happy to ride shotgun or share the driving with you if you like, and having someone to talk to can sometimes make that trip a whole lot shorter than it really is. My last few times down, either my friend Thomas or Steven Gary went with me, and often, one of them would drive and just allow me to relax if I could. That is such an incredible gift to receive, I never knew how to appropriately say thanks. Thomas has babysat me through a number of harrowing experiences physically and medically, and it just baffles my mind how much having that person there who cares for you can do for you. I'm single now, and since I haven't always been single, ad even though it's been eight years since I was married, I'm finding that to be one of the harder aspects of being physically challenged because I also have no immediate family here. Throughout my life, I have always surrounded myself with what I will call my "family of choice" because I live pretty far from the family homelands in PA. I do have a feeling, though, that even if I were in the family-close-by category, I would probably have m family of choice too. People in that category are just so special because they've "become" family, and you get to pick them, not just end up with them. Hehehehe. Oh, please, don't get me wrong about my family. I have one sister who is three years older than I am, and we communicate several times a week via email, and often over the phone - I think the world of her. If I were close by home, I have a feeling that she would be in my family of choice even though she is already my sister.

Jeannie, I wanted to explain something geek-related to you that might be helpful to you with the posts you are "losing". One, if you need to look back on the thread you are replying to, scroll to the bottom of the page, and unless the topic has gotten too long, it will all be there for you to see without having to go to another page.

Another thing that comes in handy is the ability of IE to open more than one browser window at a time, which can save you a lot of time and grief if you need to look back at anything and the topic has gotten too long to view all of it at the bottom. Once it has gotten too long, they provide you with a link to view it, and it's "supposed" to keep what you've already written, but I never trust that.

Anyway, what you can do is, click on File, then New, then Window. It will open another instance of Internet Explorer with EXACTLY the same page you have in front of you so you actually have two copies. You can use either one to either go back and look at the topic, OR click on the link at the bottom to get to review the topic. Your post will still be safe in the second window that is open so you don't have to worry about losing it. http://www.geekfest.com/ubb/smile.gif I've been saved many-a-time by using this feature.

Anther thing you can do is copy and paste when you've already written to the clipboard so that, if you use your usual method of going back to check out the topic, when you come back, if your post is gone, you can just paste it back into the window. Does that make sense? If you're not used to using copy and paste, the really easiest way, I've found, to use it while on the board is to use the keyboard shortcuts so you don't have to quit typing rather than the mouse, which requires you to take your hands off the keyboard. As long as your cursor is within the text box window, use Alt-E, then A. That selects all the text, and you'll see it all highlighted. Then click on Alt-E, then C. That copies what is highlighted to the clipboard, and it will remain there as long as you don't paste anything else to the clipboard in the interim. That way, you have it "saved" temporarily s that, if you lose it when you come back to your post, it's really easy to get it back. Just put your cursor in the box by clicking inside the box, then Use Alt-E, then P, and it will paste all that text you copied to the clipboard right back where it belongs. http://www.geekfest.com/ubb/wink.gif I often use this as a way to "save" what I've already written just in case a problem develops on my PC so I have to close IE for some reason.

Then, my personal favorite is to not write your post on the board at all, but write it in Notepad or Word or WordPerfect or whatever word processor you use. When done, you can use the same shortcut keys as above to copy to the clipboard from the word processor, then go to the board, and to the screen where you want to make your post, click onside the box so that is where any text will go, and click on Alt-E, then P, and voilà! The whole post you wrote in the word processor is pasted into the window on the board, and all you have to do is click on Submit, and you've posted. http://www.geekfest.com/ubb/biggrin.gif You'll never have to lose one, single brilliant word you've written ever again! http://www.geekfest.com/ubb/wink.gif

Can you tell that I must have lost a lot of posts myself at one time? LOL Sorry if this just looks like a geek lesson instead of a supportive post. I hope this is one way I can be supportive too.

Missie, and you too, Deb, and you Jeannie, I hope that your Sunday was lovely and spent in the company of those you love, and who love you. There simply ain;t nothin' better. http://www.geekfest.com/ubb/biggrin.gif

I drove into town this evening to collect on a dinner invitation that is a weekly gift from two friends in Washington state. My good friend, Bev Wilkinson, and I used to eat fairly often at Myrtie Mae's despite the fact that I couldn't really afford it. We did this for years, dating way back to when she first became a geek client in, oh, 1996 or 97, thereabouts. Last year, she met and fell in love with her soul mate, and they were married in Provincetown, MA in a beautiful oceanside ceremony. Then, in October, Bev moved to the Pacific Northwest to be with Patty because Patty is still working and won't retire for another year or two. They plan, long-term, to split their time between WA and Eureka Springs, but until Patty retires, most of their time will be spent in WA. Anyway, the first Saturday after Bev moved, I got a phone call from the two of them, and Patty asked me if I had thought about what I was going to do on Saturday evenings now (since that had been Bev's and my standing date for almost 8 years). I told her I hadn't really given it much thought yet, and she told me that THEY had. What those two wonderful brats did was set up an account at Myrtie Mae's in my name, and I was told that every Saturday, I was to go and have the prime rib special, something I absolutely LOVE there, and it was on them. What an incredibly thoughtful gift! Well, yesterday, I wasn't feeling well enough to even leave the house so I went in tonight and had dinner on them instead, picked up a few groceries, stopped to see my friend Thomas at his carriage depot, then came on home. I cannot believe how much that little bit of energy expenditure has completely wiped me out! (I did get some protein in me though, which I really needed as lately, I've not been able to eat much - too bad it's not showing up in my waistline). I basically only had dinner, sat with friends and chatted awhile, and shopped at Hart's for maybe 15 minutes, and that was it. Of course, that means twice of getting the chair both in and out of the van, setting up and taking down ramps, etc. too, but even with that, it's only four times with the ramps. I just feel like such a woos for not having any energy at all. I'm anemic right now, and a recent treatment protocol put me in bone marrow suppression so my marrow isn't producing as many blood cells of ANY type as it should so I'm blaming the extra energy loss on that. I pretty much had already known my immune system was shot already, but the bone marrow suppression makes that far more pronounced so I'm like a walking magnet for picking up just about anything that happens to float on by. I think I have a doctor's appointment sometime this week, but if not, I'm going to make one. Just too many weird things going on that don't make sense to me.

One more thing before I close. Thanks so much, my dear friends, for putting up with my long-windedness . . . I know I've heard from each of you at one point in time or another that we're all a praying bunch no matter which particular brand of prayer we do. I found out recently that this MRSA infection that I've acquired, and that is now systemic, and that they have not been able to kill, carries with it a 70%-75% mortality rate. It immediately made me wish I was NOT such a good researched. of course, I didn't just take it but checked it out with my MD as well. The other things I have going on certainly have the opportunity to be fatal, but I have been so very blessed to have walked through the valley of the shadow of death so many times, and still comes out on the other side, especially with the clotting episodes. Anyway, I wonder if you would be so kind as to include me in your prayer lists or whatever it is you do to keep track of who you are thinking of when putting in a few good words. I would be forever grateful if you'd include me in your thoughts, prayers, sending of white light, candle lighting, incense burning, whatever it is you do in your own faith tradition. Muchas gracias mes amigas. You have become such precious souls to me in such a short time. How wonderful! Thank you for any energy you can direct my way, but please, don't take any away from yourself in the process. We ALL need everything wen can get. Deal?

I'll admit, I'm a little . . . okay, a LOT scared by all this. And then, I get mad at me for feeling scared and tell myself I should have more faith that the Universe is unfolding just the way it is supposed to. In any case, thank you, and thank you, each and every one, for your openness and willingness to share. We have, indeed, created something beautiful here, and not by mere coincidence (which I don't believe in anyway). I believe we were all directed with lots of angelic help to be at the right place, at the right time, and to be open to whatever the Universe had to offer. I feel so very blessed to have you in my life. Thank you for being open to the direction of spirit. My love to all of you.

Namaste!
Shimaka

[mls1271]

Shimaka....do not ever say sorry for writing to much. To me this is a sounding board for us to say what we think, how we feel. or just what ever we want to say.
Everyone of you are in my prayers and thoughts everyday since the time I have meet you on this board. You all seem like very wonderful ladies that I am excitied about getting to know.
Deb....yes I am from the Sisco family that lived on the Kings River and ran the float trips. My parents are David and Becky, my sister that went to school to be a teacher is Fonda, I am the middle and then I have a younger sister Cathy or she goes by Cat. I loved living at the river but when they starting changing things by adding the new bridge and paving the highways we new it would not be like it used to be so we found a nice big house in town that is off in the woods a little so that we still feel like we are in the country some.
As far as OGC goes, so far I feel very comfortable. However, very soon my therapist is taking more time off so I will be seeing another therapist. In a way I am looking forward to it. The therapist I have now has promised to keep in touch because she wants to be in on my sistuation and the healing part of it. Plus the new therapist may have some new insight that we have tried yet. I am on several different meds...anti-seizure and also anxiety meds too, and sleeping meds and anti-depressants.
As far as the neurologists go....that was all at the beginning of my illness when I did not believe that my mind could actually be the cause of something that hurt so bad. I finally believe and everytime someone (friends) suggest that I need to go to a neurologist or a neurology hospital I still tell them that they can not help me, that I am need a mental hospital before I need the neurology part. LOL
My day yesterday pretty much started out with a seizure while giving my son a bath in the morning. Pulled thru that one and went with my mom, son, and niece to go to the lake to see my sister and her family. My daughter had spent the whole last week with them so I was missing her very badly. They all went swimming while I sat in my chair and watched. Which was ok. Eventhough I would much rather be out there swimming it was fun just to watch them. I did ok in the heat which of course was my mother's greatest fear. After returning home though I did have another one with unconcouisness for about 6 to 7 minutes and then waking up from that mom said I had another seizure. I was very wiped out from those. It was basically laying on the floor untill I had enough strength to get the the chair and then more time until I could get downstairs to bed.
Today my daughter is back home and I am very excited about that.
Shimaka....I know the feeling about having great friends that move away. I have friends that took me into their home when I was in a mess in my life and they have since moved on to several different places, but have always been there when I have needed them. They are my children's God Parents.
Deb..I am glad to hear that you are having hand surgery if that is what you need. I am sorry to hear that your back is in so much pain. Like I said before you are all in my prayers.
Ok so maybe I have been rambling on to much today. If you asked a question and I forgot to answer it I am sorry. Please ask again though.
I hope you all have a great day.
Missie

[DaBee]

It sure is good to hear from you, Missie. Thanks for sharing your life, the positives and, well, the scary parts too. Have a wonderful day in the Ozarks/deb

[DaBee]

Jeannie, in reading this earlier today, I thought of you (many, many years from now). Not just because of the Jones, but because of your smiling, positive, de lightful attitude http://www.geekfest.com/ubb/wink.gif.


FOCUS

The 92-year-old, petite, well-poised and proud lady, who is fully dressed each
morning by eight o'clock, with her hair fashionably coifed and makeup
perfectly applied, even though she is legally blind, moved to a nursing home
today.

Her husband of 70 years recently passed away, making the move necessary.
After many hours of waiting patiently in the lobby of the nursing home, she
smiled sweetly when told her room was ready. As she maneuvered her walker to
the elevator, I provided a visual description of her tiny room, including the
eyelet curtains that hung on her window.

"I love it," she stated with the enthusiasm of an eight-year-old having just
been presented with a new puppy.

"Mrs. Jones, you haven't seen the room ... just wait." "That doesn't have
anything to do with it," she replied. "Happiness is something you decide on
ahead of time. Whether I like my room or not doesn't depend on how the
furniture is arranged, it's how I arrange my mind. I already decided to love
it. It's a decision I make every morning.

When I wake up, I have a choice; I can spend the day in bed recounting the
difficulty I have with the parts of my body that no longer work, or get out of
bed and be thankful for the ones that do. Each day is a gift and, as long as
my eyes open, I'll focus on the new day and all the happy memories I've stored
away just for this time in my life."

[Shimaka]

Good evening, my dear friends,

A slow day on our own little thread, I see. I hope all is all right with everyone and that it's been a relatively pain-free day for those dealing with pain, and a good head day too, and I ain't talkin' 'bout hair. LOL

I hope y'all don't mind if I tell you about my day. I need to talk, and it's 1:35 in the morning. I need to go to sleep, really, but I've always been an insomniac, and the events of the past several years, and their affect on my body, has not helped much in that way. There are times I go days and don't sleep at all, then make up for it all at once, but I never know when it will happen so it's a little hard to plan sometimes.

I didn't realize that today was my doctor's appointment until this morning when I called to check. I knew it was this week or next, but I'd lost the card, and, well, you know how that goes. I found out it was at 3:30 so I had plenty of time since it was only 10 AM.

It was a harrowing day all the way around, even though when I called those I had promised to let know I was home safe and sound, I said I was fine, that I was just happy to have some answers. And, I did get some answers today, answers that made sense, and to me, most of the time, that's FAR more important than anything else. I realized later tonight that, after I had told the couple of people I had committed to calling that, there was much more to what I was feeling than what I was letting on, even to me.

I think I mentioned a couple of days ago that I was dealing with a MRSA infection that is three+ years old. That's a stapf infection that's the super bug type of staph that's resistant to all the usual antibiotics that has always killed it off in the past. It's likely, I'm told, that I picked this up the first or second time I spent a week in the hospital for a DVT (blood clots), and that, though I literally begged three different doctors to please culture something of the skin infection I have that keeps getting worse all the time, for some reason as yet unknown, all three, including the dermatologist I saw, refused.

In March of this year, it started to get worse almost exponentially. And by April, when I had a doctor's appt (new doc, thankfully), I showed him a new breakout that had formed in a not very public place (and no, not south either) - his first words were "I HAVE TO CULTURE THAT!" I kissed him. It was just a knee jerk reaction. I was so happy to feel validated for some reason that he felt he should at LEAST do a culture, and that's how they found the staph. They did a sensitivity test to find out what antibiotic would work, and that's how they found out it was the MRSA instead of regular ole staph. It's gone on long enough now that it's systemic, no longer just a skin infection, and he started me on an antibiotic called Zyvox, apologizing for the price. Well, I was used to having people apologize for the price, but I had NO Earthly idea that the d*mn drug cost $100 per pill, as in $1,400 for a 7-day supply! My pharmacist actually whispered it to me when she looked it up, like SHE was embarrassed. I took it like a good kid despite the fact that it made me feel absolutely horrible from day 1. By day 6, I was shaking uncontrollably, I could NOT eat, and I realized that I wasn't able to put a full sentence together. I had a date with a couple of friends for dinner, and it was excruciating to try to have a conversation. I would begin a sentence, and lose myself on the third word, and the fourth, the fifth, and sometimes, wouldn't even get through the sentence at all. I felt like someone had taken about a hundred points off the top of my IQ!

Three days later, I went toxic. I literally could not feel my body, ANY of my body. Skin, muscles, anything. Could walk but not feel my feet touch the ground. Would sit down, and the only way I knew I was sitting is that I stopped all downward motion. It was pretty scary. And, it was like I had this really small tunnel for vision. And it kept getting smaller. I finally faxed my doctor's office because I didn't think I could call and make a full sentence to tell them what was happening. In the end, I had to quit taking the drug before it was able to do its thing, and I had been told it was the only drug on the market that could do the job. I knew I was screwed. Didn't know what else we would do.

We did other cultures, and they came back with bacteria, but not staph. I was not elated because I knew something was wrong. It didn't seem right. Today, I found out why. Sorry for the big intro, but I didn't know how else to preface coming into today. I felt sorry for my doctor today because he spent a lot of time apologizing...first, because he trusted the preliminary results of the cultures, and of course, he wanted to give me good news. When the actual test results came back (I didn't know the others were preliminaries), it was found I'm basically infested with the stuff. That's the first time a word like that has been used. We were almost at the point where I was going to have to go into the hospital to have a PICC line put in and have IV therapy every day for a month with another drug that hadn't been mentioned before because you have to be hospitalized and have it IV in order to have it at all. It's called Vancomycin. I don't want to know how much it costs. All I know is it's more expensive than Zyvox. I realize the pharmaceutical companies have to pay for the R&D, but sometimes, I really think they are just out to take advantage of us. The only reason this drug, and Zyvox are so expensive is that the people who need them are desperate and have no other choice. Sh*t, just tell someone there is a 75% mortality rate with what you have, and you'll FIND the money if you have to rob a bank! And, they know it.

As it turns out in the end, my doc had an hour consultation with an infectious disease specialist. The guy, as soon as he heard about the medications I was on asked if I was okay several times until I guess my doctor realized he needed an answer. <G> Evidently, the anti-depressant I take, which is Effexor XR, like any other in the SSRI family, raises seratonin like most of us know, but what my doctor didn't know (because I asked about drug interactions) is that Zyvox basically sends your seratonin level out of sight. I OD'd, in essence. That's what happened way back when when we weren't sure if it was allergy or if I had gone toxic for some unknown reason, or whatever, and I had to quit taking the drug.

So now, I have to taper off my anti-depressant, which scares the bejezzuz out of me! I told my doc that was like taking estrogen away from a woman with no ovaries. I couldn't guarantee I wouldn't kill someone. Anyway, after I taper off the anti-depressant completely, I'll take the Zyvox for a month, not the usual two weeks. BUT, if it doesn't make me too sick (it acts like chemo so I know I'll have to deal with THOSE side effects), and I can tolerate it, I won't have to do the hospital or PICC line. Whew! I'm praying. And I'm scared. D*mn, thats hard to admit. I had enough stuff to deal with without this. And, I'm VERY angry at those three doctors who refused to culture something when it was most likely still just a skin infection that could have been treated much more easily, and wasn't life threatening. Now it is. I do feel blessed though. The powers that be have seen fit to let me stare down my mortality several times and walk or wheel away from it. Even if we take away everything else, and just look at the clots (all seven of the incidences) and genetic propensity to clot, most people never learn they've had a blood clot or have any kind of predisposition. It's grieving family members who find out. I am so very blessed in that department so I must not be through here yet. I'm still hanging around even with the odds against me so many times. I surely don't know why. I'm not exactly saint or angel material, and I'm just the average Jill on the street, yet the universe has seen fit to allow me to actually live through some pretty harrowing things that have killed people a lot stronger than I am. Now, I need to find out what it is I'm supposed to be doing. OBVIOUSLY, God isn't finished with me yet!

So, my friends, I'm thrilled to have some answers, and to KNOW I wasn't crazy that day that everything just went haywire. The infectious disease specialist said he was surprised I didn't 1) just die, 2) kill myself, or 3) end up in a padded room. He said that, any time he's had that happen before, where someone is taking an SSRI and takes Zyvox, they end up psychotic and hallucinate, or just kill themselves, or, or, or . . . Lucky again. Blessed again. I guess I really should stop asking why, but it's difficult to explain. I don't think ANYone would feel worth of THIS many chances so I doubt I'm alone in that.

I'm quite sure my therapist will be thrilled to hear this news because I went through a major crisis right before that BIG DAY when I had to stop the Zyvox. I actually kept my promise to her and called her because I felt like killing myself. She didn't want to laugh, but she did tell me, Phyl, NO ONE keeps that promise! LOL I guess I'm just stupid. I did. Now, we have a reason. It wasn't me. I hadn't completely lost my anchor. It was the meds!

I'm still scared, and a month is a very loonnngggg time. But, I'd still rather have it be like this than the PICC line and have to show up at the hospital every 18 hours for a month. I just hope and pray and meditate and visualize that this will work, and the other will not be necessary so it can be OVER WITH. Kill off those little buggers once and for all. Much as I hate to kill anything, they are killing me so it's WAR! I had a chat with them not so long ago and told them I didn't want to kill them so if they went away quietly, I wouldn't have to, and they could find somewhere else to live. I even offered to find them a suitable home. They didn't seem interested. They're REALLY happy where they are. I'm so sorry gang, but you're outa here!

Thanks for letting me vent, gals. Whew! I hope I can sleep tonight. Man, do I need it. Blessing to you all. My love too.

Namaste!
Shimaka

[Jeannie Jones]

Well, dear hearts, I'm so grateful for y'all. Thanks, Deb, for the forward about the blind woman. Have always loved that one.

Y'know, girl, it's so grand that you have left behind your shyness, brought us over here, and are sharing more info. about your physical difficulties.

Shimaka, you are just a continuing inspiration to us all. You do so much, even living alone with your "disabilities". Thanks for the helpful hints re: the computer. The way I want it to work is the way it worked when I had an earlier version of windows--open windows would stack on top of each other, then you could click out of the top window by the red X at top right, and the previous windows would remain. Now if I stack 'em up, and click up top, they all go bye-bye.

Sorry, dearies, no energy today. I have a friend I'd like to invite to join us--don't know if she will or not, but I'll ask her.

Missie, glad to see you're still "with" us here.

Love to y'all,

Jeannie

[mls1271]

Good Morning ladies.
Shimaka, I am sorry but also glad with the results that you found out at the doctor yesterday. It is horrible news to get, but at least they have figured it out and can start to treat it as soon as you get off your antidepressants. How long will it take for you to tapper off? I am like you I can not imagine tappering off, but if that is what has to be done to help save yourself then I know you are strong enough to do it. I also feel like all of us are here for you and will help in any way that we can. Thanks for sharing with us.
My day yesterday was a full packed day. Had to go to the bank, pharmacy, OGC, Health Dept, and Wal-Mart. I thought I was going to fall apart by the end ofit, but I held through. The good news is that they increased my Lexapro to help with my depression which just seemed to get worse everyday and also Louie my son was able to get on WIC until December so we can get assitance with milk, cheese and stuff. Every little bit helps. I did end up having a big seizure and unconciousness at about 1030 lastnight but at least I was in bed. So painful afterwards and even very sore this morning with a big headache.
It seems like my 10 year old daughter, Haillie, is growing up to fast. I am going to need a calander just for her activities this summer. She just got home yesterday and already has stuff planned for today, tomorrow night and Thursday and 4 full days next week. I dread when she is a teenager if she is this busy now. Oh well, I am sure it is good for her. She loves her friends so much!
Well I think I will try to take it easy today. Although, I do have to bake some goodies for a yard/bake sale that we are having for the Rock House Cemetary. Well it is not at our house, but at my aunt's house in Berryville. I will also make a few beaded pieces of jewelry to sell. Making jewelry does help to relax me until I get frustrated with the the piece I am making....LOL!
So ladies I hope you all have a very good day and try to keep the pain levels down. I am so very happy that I stumbled upon this group. I know God just sent me here because he knows for sure that I need all the support I can get.

Bye for now....Missie

[Jeannie Jones]

Wow! Shimaka, I hadn't read your last post before I posted mine--you can see how close together the times are. I'll go back and study on your post after lunch.

Missie, you seem to do so much! It's great that you're making cookies after going to all those appointments! My hat's off to you.

Deb, always grateful for your continuing this thread and for just bein' you, you little sprite with such a fine mind!

Later

JJ

[DaBee]

WOO-HOO everybody; we're so hot, we're cool!
You took us into the hot topic status, Jeannie. From the looks of things, this is the 1st for the Gratitude Journal. I'm just feeling gratitude for that. Think we need to nudge a few more people to come over here? Just have the feeling that maybe they aren't aware that we made the leap.
I'm having a good day and my energy level is up. Love it when that happens. It's the pacing myself that I'm not too good at when it happens. //deb
p.s.think I hear thunder....my garden is feeling gratitude for the good rain we got yesterday. I know because she told me 1st thing this morning. http://www.geekfest.com/ubb/wink.gif

[mtnviewsteve]

"Hello" friends,
Must admit I've been "lurking" and "learning" what a brave and courageous bunch ya'll are. So enjoy the personal accounts that go to make each of us the person with the view-points and feelings we have.
Really enjoy the peaceful,tranquil, en-"LIGHTENING" mood of this very special place.
Hope to continue learning moer about us all.
Still awaiting my results of MRI. Have Dr. appointment tomorrow, I have missed so much work the past few weeks, afraid they will consider me a "liability" and fear they will "give me the boot" as soon as it's advantageous for them. God must have "abundant plans" for even me.
http://www.geekfest.com/ubb/cool.gif PEACE**LOVE**TWISTED-LIGHT**
sTeVe.

[mls1271]

Steve it is glad to meet you here.
I also do not know when to stop before I have overdone it. That ot one of my huge flaws. I have worked so hard all of my life, which yes I know I am not that old, but it has made me where I have a very hard saying "no" and I try to do everything I can. Sometimes my mother yells at me still because I am overdoing it.
Well I did not get cookies made today. I thought today was wed.....so I will have to make them tomorrow. I did however get several pieces of jewelry made and laudry done. I am pretty warn out and tired tonight. My daughter has a friend over so they are wanting to go outside with my son and catch fireflies, so I better go for now.
I hope you all had a good day!

[DaBee]

Hello Shimaka, wherever you are. Maybe you slept in late today. It's after 9, so time to get up http://www.geekfest.com/ubb/wink.gif!
Fireflys are really starting to increase in number. What fun to have kids around for neat stuff like this, Missy. I like to just sit out on the porch at dark, shooing the skeeters away, but watching these miraculous light critters. Maybe they could be our totem or mascot. Or maybe just leave 'em alone and enjoy watching them. Gotta remember to keep things simple. I did stuff outside today and got plum tuckered out, but it's the getting chores done kinda tired, not the disease kind of tired. I like this kind best and am very much in gratitude when I can pull it off and experience grubby, sweaty, stinky kinda of tiredness.
So nice to hear from all y'all today. Shimaka - waiting for you to make my day http://www.geekfest.com/ubb/smile.gif
latergaters/deb
p.s. good to see ya' here sTeVe

[Jeannie Jones]

Well, it's 12:34 and I so enjoy that! I know, some would say "get a life", but if a digital clock can amuse me, well, ya gotta know how simplified MY life is! I'm not a clock-watcher, but I do seem to hit it at particularly fun times--like a straight or three or four of a kind in poker. Now from mentioning it, I've got my mom and Ave, our friend/neighbor doing it too!

Anyway, HI sweeties--

How wonderful that Mr. sTeVe has joined us. Y'know, I had been thinking this afternoon that it would really be great if we had sTeVe's lovely presence in this thread, then the next time I checked in, there he was! Love it! I've had a couple of times today when I knew exactly what someone was going to say or sing, so I guess I'm on a roll.

sTeVe, I hope you don't mind if I call you Steve, 'cause it's easier to type! Hope you get your MRI results tomorrow, and that you'll be able to sleep well tonight. Of course, you know that if your work lets you go, then it's in reality freeing you for the next thing.

Back when life seemed more "normal", I would say that I hope your MRI results prove you to be healthy (or something like that), but now I'm working on freeing myself of judgement and polarity, and the above would just pull me back into judgement and polarity.

We don't know why we have these apparent illnesses or dis-eases, but we do know we're on the "light" path and our seeming "problems" must serve a purpose in this. How on earth would we 4 link up if it were not for our conditions?!

Every moment of every lifetime we've lived has led us to this moment now. That's my belief. As we come closer to the grand "transformation", the pressure has us almost nailed to the ground. There's my 2 cents worth, anyway.

Shimaka, yes, I've tried it in the ways that the bbs would suggest one do, but I STILL somehow have managed to lose posts! I've found a simple key for me, though. I open up this page, close it down into the tray, then open it up again by going back to the page again through my "favorites" and hit "post reply", and put that one in the tray too. Then I right-click on an empty spot on the bottom and choose to "tile windows vertically", so I have my reply on one side, and everybody's posts on the other 1/2 of my screen. Works for me. I like it. http://www.geekfest.com/ubb/smile.gif

So, hey, Deb, not only are we flamin', but you've brought us into a second page! Do you get bit by chiggers, ticks, skeeters when you're outside or do you wear bug spray all the time? If there's a bug in the vicinity, it'll bite me, and I don't go for putting stuff on, so I just end up staying inside all the time.

If it's your sub-conscious that's triggering your seizures, Missie, you must be some powerful manifester. When you learn to harness your ability to do that in a positive way, there'll be no stopping you, girl!

Shimaka, that's quite a horror story with 3 doctors refusing to get a culture of your infection! I was telling a very close friend of mine (hope you don't mind) about it, and she said that she felt the doctors were all trying to prevent a lawsuit by ignoring it. If they had run the culture, there would be proof, then maybe you'd have grounds to sue the hospital or someone (covering the med. community's ASSets, as it were). Anyway, she said that and that "we Lightworkers are wearing out and breaking down, but pieces of us are still here"! She said "Nefalia sends her love".

Well, sweet'ums, that's all I can do for now. Been resting up from Sunday, and tomorrow we've got the chirodoc, which means getting up 3 1/2 or 4 hours before leaving the house in order to get a shower in. It takes me so long to "gather" myself.

I wrap you in my love,

Jeannie

[This message has been edited by Jeannie Jones (edited 06-09-2004).]

[Shimaka]

Ohmy, friends, I had this nice, long post here, and I inadvertently fell asleep before I posted it. That's not all that uncommon, but what was uncommon was that, like happens all the time, I went to clean up all the extra letters and stuff that were at the end of where I quit writing, only thing time, someone "insert" was turned off, and all those nnnnnnnnnnnnnnaaaaaaaaaaaaakkkkkkkkkkkkkkwwwwwwwww wwwwwwwwww that was all over the place wrote over what I had written instead of appending to the end. Arrggghhhh!!!!!!

One other thing that irritates me about IE is that it doesn't have an undo function so if you accidentally do something like that, you can't undo to the last point you were at. So, I lost everything. I'm so sorry. It was a good post too! I'm going to "try" to do an abbreviated form here and hope I don't fall asleep again. @##^%$@*&$(*

Deb, you were right. I DID sleep in, mostly because I spent at least three times as many spoons as I had yesterday. And, I've kind of run both sides against the middle of late so I've been doing a lot of sleeping all day kinds of things. I'll get up, have some coffee, feed my furry child, then fall asleep again. I did that several times today. Woke up around 11 PM or so when a guy friend called and asked me how long to boil corn. LOL Some things never change, I swear. It made me smile to type that so it must have been a good thing. He's one who always does most of the cooking in his place and for his lady, but every once in awhile, he just gets lost and doesn't know what to do. I'm the consumate bacherlorette so one can tell the minute they see my house. http://www.geekfest.com/ubb/wink.gif Actually, my various and sundry physical limitations haven't exactly made me a better housekeeper either. That part frustrates the heck outa me. But anyway, when I was married, I always did the cooking so at least I usually know the answers to the questions. Hehehe, poor guy. He does try, at least.

Steve, welcome to the family. And thank you for your wonderful note today. It made my day. I'll tell ya that it just makes me reach out and give you this huge spirit hug every time I see your signature line. You're a very special soul as are we all, and I do think this is one of the many places you belong. How nice to have you among us, bro.

Missie, I was thinking that I hope you might find it in yourself to get a helmet made especially for people like us who find ourselves on the floor more often than not without any notice. I realize if vanity is a problem, then, well, it can be an issue. A friend of mine who shares the same clotting factor problem (we met on an email list for clotters) sent me a helmet in the mail last year. I mean, this thing is meant for this purpose! I had had a particularly bad weekend and had fallen out of my office chair four times in three days, all four times landing on my head! Ouch! The last time, I literally cracked my noggin and ended up in the ER with a broken or cracked cranium and this HUGE hematoma on top my head that looked like a peak. I know I'm not from this planet, but this hematoma made me look like I was from the wrong one! http://www.geekfest.com/ubb/biggrin.gif About four days later, as I stumbled into the bathroom for the first time in the morning, I accidentally looked in the mirror, and was so shocked it was unreal. I looked like a victim of domestic violence. Over the next several days, I found myself watching in horror as it filled in, and the blood that had been contained in that hematoma took advantage of gravity and draine down my face until I had raccoon eyes. It turned out to not hurt a thing though, in the long run, as my SS disability hearing was that week. Looking like that didn't hurt my chance one little bit.

Anyway, the story only serves to prove the point that the helmets really can make a difference so, if you were to get one, even if you only wore it at home where your loving family is so supportive, it could prevent some disastrous consequences at some point. Just something for you to put in your pipe and smoke it and see how you feel about it - offered by someone who cares about you, a lot.

Jeannie, I'm so glad you found a way to work out the browser problem. There really is no reason that any version of Windows past 3.1X should NOT work the way I described to you, but it seems you have found a way to do it anyway. You could do it the way I suggested and save several steps, but I also know that, if you already have a way that works, why fix it if it ain't broke?

And I'm so sorry that your spoon supply is low today, or was low, uh, yesterday. http://www.geekfest.com/ubb/biggrin.gif Maybe you gave some of your spoons to Deb. She was on a tear and had more spoons than usual. How great, Deb! Just try, and I know how hard it is, to not overdo it when you have one of those days so you won't pay for it the next, okay? You are both so wonderful, and so special. This little meeting ground, or any other we might pick, is so special because we put our energy together and make it so.

You have all given me so much support today, thank you so much! When I posted last night/early this morning, it felt so lonely in here. Honest, it was eerie, kind of like the walls echoed. I don't know how else to explain it. But then, it could have a lot more to do with my state of mind and spirit than anything to do with the "place". I was feeling pretty alone at the time.

My furry child just came up lookin' for lovin'. He so rarely does that that I just have to take advantage of it. He's such a doll, and definitely my totem. His name is Medi, which is short for Medicine. His full name is Sheih Sheih Medicine Peke - a Pekingese who somehow KNOWS his royalty heritage and expects to be treated likewise. LOL Look around the place, Medi. Does this look like Royalty to you??? Heheh, but luckily for him, he thinks this IS royalty, and I've never allowed him to know differently. At times, I think he only keeps me around because he's not tall enough to reach the can opener. LOL But, let me be sick or feeling particularly down, and he's on me like glue on post-it notes. I do believe that our furry friends are so good for us, and they give us so much unconditional love. I am so rich!

http://www.shimaka.com/justme/Puppyluv2.jpg

Deb, please try not to overdo it on your good days, just like I was going to ask Missie. It's so easy to wake up and feel like we have more spoons than we have, and go out there raring to go, thinking we're invincible again, when we never really were in the first place. Please, do take care of yourselves. You not only have your own families and people who love you, but now you have us too, and we'd like to keep you around. Please, be good to yourselves. We love you! S M O O C H E S ! ! ! ! !

My friends, I know I didn't cover half the terriroty I covered in that first letter, and I apologize for not addressing more things from your wonderful notes of today. I just realized I'm nodding off again, and Medi does call so I gues, even though it's not even 4:30, he wants to go OUT and to get his dinner. He's early, of course, but how does one fight with a 14-year-old Pekingese who thinks he's royalty? Hehehe, especially a Leo with a short man's complex? LOL

Thank you, once again, so much, for your support and loving, caring natures that you've been so kind to share with me. These next six weeks could be difficult, and I may need more help than usual. I promise that, if I need something, and any of you are in a position to do something, I will not hesitate to call on you. you have my solemn word on that, and I take such things seriously.

Go carefully, my dear friends. You are in my heart, and in my thoughts and prayers. I hold you all up in prayer and light and love and think of you so often. Thank you for becoming like another family to me. I think you are all simply WONDERFUL!

Namaste!
Shimaka

"I often have wandered in deep contemplation. It seems that the mind runs wild when you're all alone - the way that it could be, the ways that it should be, things I'd do differently if I could do them again." ~ John Denver

[This message has been edited by Shimaka (edited 06-09-2004).]

[mtnviewsteve]

Wake up to the fresh smell of rain and the peacefulness these Ozark Mts. provide. Our "Great Spirit" sure knows how to make a day start off wonderful. Good morning, "GLW"
(Gratitude Light Workers) and hope you slept or rested better than I. Oh well, early is good. Thanks to everyone for the warm welcome aboard, never was much to join things, but I wouldn't miss this forum for the world. Passing out hugh armloads of spoons, so take what you need plus that many more as we face the day. http://www.geekfest.com/ubb/cool.gif
Have Dr. appoint. at 10:30, so say your Hara-Krishna's for me, as I will for you. Will ketch ya' up when I find out "what condition, my condition is in".
**PEACE**LOVE**TWISTED-LOWER-BACK LIGHT**
sTeVe. http://www.geekfest.com/ubb/cool.gif

Today's Positive Affirmation:

My heart is filled with love therefore I expect everything in my life to work together to create wondrous blessings
for me this and every day.

[Shimaka]

Blessing to/on/for you Steve, my spirit brother. I shall be thinking of, blessing, and praying for you at the appointed hour, and before and after.

Yes, I realize it's only a couple of hours after I was going to bed.

Obviously, I didn't. Medi had other ideas, as did my rather pain-wracked bod. Argh! I'll live! I'm too mean to do anything else. And, too determined to not let this damn thing win!

Sorry! That was not exactly in the language I would like to put forth. But, it's sure how I feel.

Good morning loves!

Namaste!
Shimaka

[Shimaka]

Originally posted by Jeannie Jones:
The way I want it to work is the way it worked when I had an earlier version of windows--open windows would stack on top of each other, then you could click out of the top window by the red X at top right, and the previous windows would remain. Now if I stack 'em up, and click up top, they all go bye-bye.

Jeannie, if you don't mind my asking, what version of Windows are you using?

If I'm not mistaken, which I very well could be, you should be able to stack to your hearts content AS LONG AS you aren't a Virgo about it and don't stack them exactly on top of one another so that the Xs line up. Does that make sense? I wish I could draw it here for you. If you want to stack five or six windows, go right ahead. Just make sure that the exit X of 1 doesn't sit right on top of the exit X for 2 or 3 or 4 or 5 or 6. They can be real close, just not right on top of one another. Then, when you click the top one, it should only close the top one. SHOULD is the operative word here. Depending on your version of Windows, this has a chance of blowing up in MY face. LOL

The other thing to make sure to do is to set up your default settings so that it is not set up to open windows all in the same one so that, when you double click on a folder, it will open a new window rather than opening it in the same one as the old one, therefore getting rid of the old one. You DO have a choice in that. If you don't know how to get to it, let me know, and I'll draw you a roadmap. {G}

Love y'all!
XOXOXOXOX
Shimaka

[Shimaka]

Originally posted by Jeannie Jones:
Shimaka, that's quite a horror story with 3 doctors refusing to get a culture of your infection! I was telling a very close friend of mine (hope you don't mind) about it, and she said that she felt the doctors were all trying to prevent a lawsuit by ignoring it. If there were proof, then maybe you'd have grounds to sue the hospital or someone. Anyway, she said that and that "we Lightworkers are wearing out and breaking down, but pieces of us are still here"! She said "Nefalia sends her love".

(emphasis added by Shimaka)

Jeannie, first, please tell Nefalia that Shimaka sends her love. What an absolutely LOVELY name. I'm sure it must have originated in the same place as Shimaka, which is with Spirit.

Second, about the part of your quote that I have highlighted: You know, I always thought that people on the path, so to speak, didn't get into suing other people. I'm beginning to change my mind. NOT, please understand me, because I think we need the reverse of that and suing everyone, but because the legal system is there for a reason, and remedies are there for very specific reasons. Many of us have never sued anyone because we don't want to appear to be a part of this litigious culture of ours. But, who ever said you have to become a part of the culture in order to take advantage of your rights?

In other words, I have considered a lawsuit, and I've advised the person who holds my financial durable power of attorney to please feel free to do so on my behalf if I am unable, and my sister, whom I love dearly, know that, should she get one of those phone calls every family member dreads, she has my permission and full support to pursue whatever legal remedies she feels are necessary and right, given the situation.

Please, Jeannie, pass this one to our Nefalia, whom I would love to meet, btw. It's actually the opposite of what you have written here. It's not that I would EVER have considered suing someone for doing their job, for trying to pin down a definitive diagnosis so that a proper treatment plan could have been implemented.

NOW, in a very real way, it's about NOT doing their jobs at a time when this would have been nothing more than a skin infection that required intervention. Due to the negligence (yes, I realize those almost sound like fighting words) of those three doctors, I no longer have a skin infection. I have a systemic infection that doesn't just hurt my vanity a little bit. It has a 75% mortality rate. There's a big difference between the two. And, according to two family doctor, and now, an infectious disease specialist, it is obvious from the records that, had this been DX'd at an earlier time, especially when I first asked, which was well over two years ago, it would most likely never have become systemic, and I would not now be facing those numbers I don't like to look at, nor the treatment (which I'm glad is there, but is far from pleasant or without its own BIG risks involved, not to mention severe discomfort). So, yes, I have considered having my attorney draft a letter to X, X, and X and detailing out exactly what the problem is, exactly what could have been done to prevent said problem, and what remedies he is seeking on my behalf. I don't know yet. Haven't made up my mind. I've never initiated a lawsuit before so it's not like this is something I know the rules to, but that's what attorneys are for, I'm told. http://www.geekfest.com/ubb/wink.gif I already have a whole pile of bills sitting on my desk that Medicaid won't cover. And, given the amount of money I get on disability, I know I'd be making $5 a month payments to enough people to eat up the entire amount of my monthly check from now to eternity if something isn't done to remedy the amount of these bills.

So, it's possible I may end up with no other choice, and that saddens me. No choice means, well, it's not up to me. It does make it look better in court, but I'm not trying to make anything look like anything. All I would like to see is a bit of fair play.

Sigh.

I apologize that, for a moment there, I got a little hot, but I sprayed myself with Medi's water sprayer. Whew! LOL I'm better now.

Love y'all!
Shimaka

"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." ~ Martin Luther King Jr.

[This message has been edited by Shimaka (edited 06-09-2004).]

[DaBee]

[QUOTE]Originally posted by Shimaka:
[B]Blessing to/on/for you Steve, my spirit brother.

AHA! I'm so twisted that I thought that sTeVe might be my spirit SISTER, being that (he/she) is also twisted. Maybe 2 twisteds equal an untwisted twisted http://www.geekfest.com/ubb/cool.gif
Yep, yep....feeling the follys of the previous 24 hours. Shimaka, the quote you presented at the end of your emails kinda sums up my attidude about this:

Life is not just a journey to the grave with the intention of arriving
safely in a pretty and well preserved body, but rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming:" Wow, what a
ride!"
@->-->-- --<--<-@ @->-->-- --<--<-@ @->-->-- --<--<-@ @->-->-- --<--<-@
I love it! Thanks. And I ended the day yesterday with 1 spoon in which I used to put myself in the shower and wash away the dirt and stinkiness to become my usual lotus flower being. uh huh http://www.geekfest.com/ubb/wink.gif

The garden is so happy this morning that she is singing, "the hills are alive with the sound of music" She just can't control her emotions sometimes...that's what I love about her http://www.geekfest.com/ubb/smile.gif

Being that the weather has so cooperated, I will be staying inside today; on and off of this contraption. I'll be tuning in to see what sTeVe has to report. Also, checking to see how everyone else is doing. Shimaka, I have definite opinions about the suing issue, but need to gather my thoughts as it seems a bit painful to talk about right at the moment. Jeannie, much comfort obtained at the chirodoc. Is it in Branson that you go for that? Whew - long way away, if so. Missie, Shimaka's idea about the helmet is a great one (in my humble opinion). I've seen them save people a lot more pain and discomfort than even the seizure causes. Do you have any sense of an aura prior to having them? It can even be the nuance of an aroma. Can others see it in your eyes just prior? Even having a few seconds of an indication can help a lot. If I'm becoming too personal, please let me know. Have a great day. Are your children in any kinds of summer programs? My grandkids are signed up for the library program. Looks like fun for them. latery'all/deb

[Jeannie Jones]

Originally posted by DaBee:

Jeannie, much comfort obtained at the chirodoc. Is it in Branson that you go for that? Whew - long way away, if so...[QUOTE]

No-no-no-no-no! Chirodoc HAS to be local. At first I was seeing him 3 x a week--now once a week--but he is definitely local!

Neurodoc is in Branson. Don't see him again 'til I think October. That's just too long a trip for Mom and me to do very often.

Glad you're back to your lotus-blossom self. I've just come out of the shower all fragranced and feeling better--surely don't do that as often as before my condition got the better of me, so to speak.

[QUOTE]...Missie, Shimaka's idea about the helmet is a great one (in my humble opinion). I've seen them save people a lot more pain and discomfort than even the seizure causes...

Ditto--if you just fall, how can you position a pillow strategically?

Don't have any more time right now--gotta keep on gettin' ready. Will be back later.

Also, SHIMAKA, my friend has some more private information for you that I'll e-mail later.

Many blessings--

JJ

[mtnviewsteve]

[QUOTE]Originally posted by DaBee:

I'll be tuning in to see what sTeVe has to report.
http://www.geekfest.com/ubb/cool.gif
Hey gang,
Sign me up for one of those "head bangin' helmets" as that's what I feel like doing right now! Dr. only knows I don't have herniated disc as show by MRI, but is making appointment for me to see orthopedic specialist. Mentioned "radiculopathy" which leaves me darker in the "LIGHT". Nothing is ever easy, and I know I'm so much better off that many, but still frustrates the "stuff" out of me still not knowing what causing the pain I know is with me.
Before I forget, was led to this meditation w/music earlier:
http://www.crystalinks.com/medmusic.html
Thanks for the support, prayers, and just being my "spirit friends." O.K. for now just bummed a little. http://www.geekfest.com/ubb/cool.gif
**PEACE**LOVE**TWISTED-LIGHT**
sTeVe.

[DaBee]

www.spineuniversity.com/public/spinesub.asp?id=57 (http://www.spineuniversity.com/public/spinesub.asp?id=57) - 37k
this is a decent site to get an idea about what this is. And thanks for the initiating info, Lany. Lany, what was your course of treatment, if you don't mind talking about it a bit. Seems like maybe a whiplash or a bad hit on the head could cause it. (See, Missie, another reason for a helmet)
Glad you arrived home safely, sTeVe. Just take it easy while you can. Are you doing heat/cold/heat/cold? Or do you even know the source of the nerve root problem?
Feel like I'm getting way personal here lately. Y'all can just ignore me if you want to, but I only ask 'cause I really want to know aaannnddd...it might help someone else reading this quietly in the background.
Was wondering also, Jeannie. Does the chiropractor have more benefit than a massage therapist for you?
OK, enough questions for this hour. NO, one more. Shimaka, did you call BreastCare?
byebyefornowy'all/deb

[mtnviewsteve]

http://www.geekfest.com/ubb/cool.gif
WOW!! Thanks for all the info and all the infor, DaBee & Lany. Will keep ya'll posted as I "learn-n-grow". Peace & "Good Health" to all my "Spirit Friends".Think problem initiated with lower back injury at work, and causing sciatic nerve damage, they think? http://www.geekfest.com/ubb/cool.gif
**PEACE**LOVE**TWISTED-LIGHT**
sTeVe..

[This message has been edited by mtnviewsteve (edited 06-09-2004).]

[Jeannie Jones]

Shimaka--from Nafalia regarding lawsuit:

First, remember you do not do this for yourself, you do it for all of those who do not know it can be done--all those who do not know their rights.

Second, if your attorney and your doctors are in the same state, hire an attorney from out of state, and I recommend Craig Lauther (sp?) Lowther? [The sound is as in allow--could even be Lauder--Louder?] at the John Q. Hammons building in Springfield, Mo. He is a piranha about things like this.

It is important to remember, it is not about Shimaka--it is about everyone.

Also remember that the Law and Justice have nothing to do with each other.

Perhaps you may not accomplish it for yourself, but you will accomplish it for millions of others. Never ever forget Karen Silkwood.

As above, so below,

Love, love, love,

Nafalia

PS--Nafalia means "I'll be with you forever", and you are right about its origin.

[This message has been edited by Jeannie Jones (edited 06-09-2004).]

[mls1271]

Wow I had alot to read to get caught up on everything. Ok, I have to ask a questions because I have missed something somewhere. What are "spoons"? My dad has been very very long. Woke up with headache and not feeling great, but had to make pecan pie and pecan bars and peanut butter conflake goodies for the bake sale. I was dead tired after that. I am going to have to take a day off pretty soon just to rest.
Great idea about the helmet. Was telling my daughter about it and my son overheard, so he ran and got his bicycle helmet for me. He is so cute. Shimaka they also say to tell you they love your furry friend.....he is very cute. Yes the kids are signed up for a lot of the summer programs. More Haillie than Louie because there is not much except the bible schools for Louie's age (4). Plus Haillie has two different "girlfriend" clubs that are doing a lot of fun stuff. One of them is going to have a carwash and lemon-aide stand this Saturday at Fred's so they can work and make money for their days of fun, like going to White Water...Seeing Harry Potter...making T-shirts and just fun stuff. They meet every Tuesday. If only I had that much energy.
Well tomorrow is my last day for group at OGC. I will miss it, but I am very gratefull that I have found these new friends of mine. Thank you all for letting me join right in. It helps to know you are all there when I need someone.
Steve, I am sorry you could not find the answer to your pain from the MRI. I hope you are able to get more help very soon.
Jeannie, I hope your appointmant went well and eased some of your pain.

Deb, I do not feel a seizure coming on at all. Some people say that it might take me awhile to figure it out. Its been over a year you would think I could figure out some type of sign by now.

Today and yesterday were also stressful, because I am getting very low on money. I had been using my tax return to live on, but it is just almost gone. I called all of my creditors and by the grace of God they are all letting my skip at least one and some of them 2 payments. I am praying so hard that my disability will be approved soon. Otherwise I will have to try and find some kind of work that I could somehow do.
well, my brain has just gone blank and I can not even think straight, so I think I will say good-bye for now.

Thank you all again so much!!! This is a great group of people.

P.S. Thank you Shimaka for all of the very kind words. They mean so much!

[Jeannie Jones]

Here y'go, Missie--

http://www.butyoudontlooksick.com/spoons.htm

[This message has been edited by Jeannie Jones (edited 06-09-2004).]

[DaBee]

[QUOTE]Originally posted by mls1271:
I am praying so hard that my disability will be approved soon. Otherwise I will have to try and find some kind of work that I could somehow do.

Missy, how long ago did you apply for SSD? I'm not going to tell you what not to do, but I want to urge you to read the guidelines on this about working.

[Jeannie Jones]

I'll be back late tonight--

[DaBee]

have fun, Jeannie!

[mtnviewsteve]

**Peace**Love**Twisted-Light**
http://www.geekfest.com/ubb/cool.gif Good morning Graditude Light Workers. Another beautiful day to give thanks for and to receive many blessings from. http://www.geekfest.com/ubb/cool.gif
Woke up this morning with a peace, and a little back and leg pain. Still thankful to have another glimpse of the beauty that surrounds us. Hope everyone is well and look forward to hearing from you today. GOD Bless, and "Namaste." http://www.geekfest.com/ubb/cool.gif
Spirit Friend,
sTeVe.
Today's Positive Visualization:

I take an even breath and relax into the Presence of God that dwells within me.
I breathe in peace and love and breathe out tension and fear. I gently connect
to the spiritual force of thanksgiving that is bubbling up within me. I open my
mind to thoughts of thanksgiving. I thank God for the many times in my past
when things looked bleak but ultimately turned out to be a great blessing. In my
mind's eye, I see every situation in my current life as a blessing. No matter how it
might appear to the natural mind, I know that all situations contain the potential for
joy and abundance. As an act of faith, I thank God for the silver lining within each
situation I am now experiencing. I expect the law of thanksgiving to bring miracles
into my life. In my mind's eye, I imagine abundance and miracles flowing into my life.
I combine these images with joy and let them go, knowing that they will create the
good things I am visualizing and thinking.
http://www.geekfest.com/ubb/cool.gif **Peace**Love**Twisted-Light**
sTeVe.

© 2002 Institute For Creative Living
All rights reserved.

For information on how you can share this positive
thought with others, send an email to:

reprint@free-positive-thought.com

[mls1271]

Good morning to all! It is such a beautiful morning. I went and sat outside and enjoyed all the birds chirpping. God has given us a beautiful place here in the Ozarks.

Deb, I applied in December and still on my first application. Yes I know just about everyone gets deined the first time, but the lawyer says it looks kind of good since I still have not gotten the first dienial yet. I keep in touch with the lady at the disability office that is getting all of my stuff together. When I got really sick in May and had to stay in the hospital several days they are wanting all of those records and then the records from Dr. Bell and OGC since March. They have them all except for the hospital and I am staying on top of them to get those records sent ASAP.

Well Louie has a friend over this morning and they are running everywhere so I best say good bye.

Everyone have a peaceful and wonderful day!
Love you all!
Missie

[Jeannie Jones]

Originally posted by Jeannie Jones:
I'll be back late tonight--

Hi, Deb--

I had just found and posted the spoons link for Missie, hadn't posted anything else yesterday except for Nafalia's post to Shimaka, had wanted to say something to a few folk, but felt the need to stop communicating for a while. I'd been on the phone for hours, and just wanted to get back to my "mindless" game for a while to unwind.

The funny thing is that when I posted "I'll be back late tonight", what I meant was that I'd get back to the bbs after anaesthetizing myself for a few hours, BUT at just about that same moment, you posted your last post, and mine looked quite out of place after that.

Anyway, I made it back today instead of last night--my verbal skills just didn't seem to be available to me late last night. http://www.geekfest.com/ubb/smile.gif



[This message has been edited by Jeannie Jones (edited 06-10-2004).]

[Jeannie Jones]

Originally posted by Shimaka:
...Jeannie, I wanted to explain something geek-related to you that might be helpful to you with the posts you are "losing"...if you need to look back on the thread you are replying to...click on File, then New, then Window. It will open another instance of Internet Explorer with EXACTLY the same page you have in front of you so you actually have two copies.

Shimaka, THANK YOU for the geek lesson! This way is MUCH simpler than what I was doing.

What we were talking about somewhere else is right-clicking on the bottom tray and choosing "cascade windows". That's where all the x's show separately. That's a really good one, too.

We're so blessed to have someone who knows so much about the workings of our PC's as you do (she said selfishly, though humbly). http://www.geekfest.com/ubb/biggrin.gif

[Jeannie Jones]

Originally posted by Shimaka:
...I'm quite sure there are a number of people who would be positively THRILLED if I adopted the attitude of "you're just not worth it!" and perhaps I will, after I've beat myself into the ground enough times...

Tut tut--please don't talk about my friend Shimaka like that.

[Jeannie Jones]

Originally posted by Shimaka:
[B]...You know, I always thought that people on the path, so to speak, didn't get into suing other people...I'm beginning to change my mind...[B]

Okay, before I speak to the above, let me just preface it by saying that the views I will express are my own, and I don't want to offend anyone with a different belief system.

SO--while we wish to be as good to--ummh--the world as possible, beginning with our own little macrocosm of our immediate environs, and then extending from there, it's not so much about "external" rules any more.

More important than the rules (of course, we all want to be good, kind, loving people), is to GO WITHIN for our guidance about what we're doing. Whether that means meditating, just taking a quiet moment to be still and try to listen, or however that translates in your life, don't make decisions based on the external rules of consensus reality, but because of what arises from within and resonates with your entire being.

The more you're able to surrender to the Divine within you, the more you HEED your guidance, the more in the flow you are, you'll find your life flowing more smoothly.

If you have an issue you need to work out, bring it within and see how your possible actions resonate within you--which feels right to the higher good. You may not see in your meditation what your next step will be, but having opened yourself up, you just might find yourself doing the right thing when the need and the opportunity are there.

The more you learn to respect the Divine Heart within, and depend less and less on allowing the mind to control everything, the more your outlook on life will change.

You (we) can and must throw off the cloak of victimhood. (And exclude also being guided by the fear of appearing how we may seem to others. The ego is complex, and often is not our friend.) What we're going through serves the Universe in some way, and how blessed is that!

When you're seeing something as a hurdle in your way, or having pain that must be acknowledged and dealt with by someone else, I humbly suggest that you not look at it as an obstacle in your path, but as part of a kind of scavenger hunt, or treasure hunt, as--well! Let's see what this will lead me to! One obvious thing it will lead you to is other people...people who may need to hear just the perfect word from you, or vice versa, people whose lives may be influenced by yours (and vice versa) and exchanges between you that aren't even on a conscious level.

Someone said this to me some many years back--look at it as if Spirit has set a smorgasbord of earthly experience before you. If you say--oh, there's peas--I don't like peas--I don't want to have to eat the peas, then you're not partaking of the whole gift of life. I know that's sometimes hard to remember when you're wracked with pain, but I do believe it to be true.

When Joan of Ark found out that she was to be burned alive, at first she said--oh no, y'don't. I recant--just don't burn me. But then she remembered that she MUST be led by her guidance, and if this was what must be done for her life to have meaning in God's plan, then this is what must be done.

Well, I'm hoping that this all makes sense to you, Shimaka dear, and perhaps you know these things already, (or even disagree with me) but my "inner nudge" nudged me to post it anyway. http://www.geekfest.com/ubb/smile.gif

With love and respect,

Jeannie






[This message has been edited by Jeannie Jones (edited 06-10-2004).]

[Jeannie Jones]

There are others that I'd like to address--like--Hi, Lany, so glad to have your input--and addressing her pain, but I'm tuckered out of communicating again, and hope to get back to it later.

Surrounding y'all with a pink fluffy cloud of love--

JJ

Page 3 already!


[This message has been edited by Jeannie Jones (edited 06-10-2004).]

[DaBee]

[QUOTE]Originally posted by Jeannie Jones:
[B] Well, I'm hoping that this all makes sense to you, Shimaka dear, and perhaps you know these things already, (or even disagree with me) but my "inner nudge" nudged me to post it anyway. http://www.geekfest.com/ubb/smile.gif

Jeannie - I know that you addressed this to Shimaka, but I peeked in and read it also.
About a month ago, a therapist gave me this same advice. I was stuck and couldn't move and was hearing so much noise going on in my brain that it kept me stymied. She simply said to take it out of my head (quit intellectualizing) and put it in my heart (chest, place of "feeling") and let it stay there for a while. Went to a meditative place in my being and actually visualized this writhing conglomeration of stuff moving from my head to my chest. All of the noise stopped and I finally became calm. Calmer than I have been in a very long time. After a few days, the ponderings came back to my reality in the form of answers or maybe things being settled. The mass confusion wasn't there anymore. I still go to my head with stuff easily, but now I know what to do about it.
Thank you for your wording on this, Jeannie. It puts it in a more genteel (sp?) feeling place than I'm able to put across.

Shimaka, don't know where you went, but I'm sure missing you. Please let me (us)know that you're ok. Your bad infection must really deplete you of much energy. Have you started the antibiotic therapy? Will it have to be done intraveniously?

Missie, how did your last session go today? There's no chance of you being able to go to another group? If you're on the Title 20 program, can't you go to group free for as long as you want?
Am glad that the gal at SS is working close with you. As long as they're still asking for more info...that's good. Have they asked you to be seen by an independent physician for their purposes?
So cute about your kids helping you with the helmet idea. Maybe an organization could help you with it. Know that they make specific ones for people with a seizure disorder. I'll look around and see what I can find out.
I slept 10 1/2 hours last night and I'm still dragging. Nature of the beast, I guess.
OH, thanks for the link, sTeVe. Hope you're feeling more comfortable tonight and sleep well.
latergaters/deb