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Posted 7/29/2007 11:58 PM (GMT 0)
Hi all--

I'm a little frustrated, well alot, because I live in this small town and I tried to get on our little local website to sell my lawnmower and I can't get on because the admin is still reviewing my account, guess he wants to make sure I meet the right racial criteria or inbred cracker criteria, I don't know.  And the site is broken and doesn't list an email address or contact info for the guy that runs is that is not part of the site itself (no [email protected]) or anything else.  I get frustrated because I was so far ahead of these people on a technical level, and I feel like I should be the one putting together a forum and all that locally because of my qualifications.  I read the little local paper and the stories are bad and full of typos and the editor doesn't know how to make an interesting paper.  I just get frustrated.  But the idea of working and making a commitment terrifies me know, because Ive done it before only to have it blow up in my face when I get sick again, and I know that I  have days where I"m ok, but other days I have trouble remembering where I live.  It just makes me so mad.  I can still program for some reason, because I don't have to think to do probably, but am too tired to work.  It's just frustrating being sick.  I feel like a has been, not useful except as a maid and chauffeur.  It's not my family's fault and I know I can't go back to work, no one would dare hire me, I'm too much of a risk and the reality of it would set in and there'd be no way I could do it, but at the same time, I'm so frustrated.  I know its wrong to be so negative, but I can't help it.  Around here, people lord their tiny bit of power over you and its such a big deal whatever you do.  I shouldn't find fault, but I have six years of college +.  I finished my second novel and its lousy I think, I'm finishing the second half of my third novel, which I actually like, but the second half of it is chaos and I'm lost in it and will probably have to throw it all out.  I'm sorry to vent.  I feel so stupid, like someone I'm not, like half of myself.  I am so sick of being sick.  I know I'm not that sick, but maybe that's the problem.  It's just bad enough to screw things up and not bad enough to keep me from fantasizing that I'm really not sick at all and I can do anything.  I've tried forcing myself to work, then weird stuff happens from stress and lack of sleep like pneumonia and meningitis and stuff.  Any ideas?

Posted 7/30/2007 1:39 AM (GMT 0)
Marji, I think we all know how you feel. I'm sorry you are having problems with selling the lawn mower and with the novel. It's really hard to be in the background so much. My sil is 2 years younger than me and is really active in church. She plays the piano sings and dances around. I hate her for it! Well not really but I hate myself somtimes because I can't do that stuff. We are supposed to be able to things. It's not natural not to. It's kind of like the saying that parents aren't supposed to bury their children. It goes against nature. We don't want to give in because giving in is to much like giving up. We don't want to except that we have limitations. I kno I can really get upset when I can't do something and I come here and rant. Sometimes I gotta step back and look at the big picture. I could be a lot worse. I could be a parapalegic. I could have inoperable cancer. I don't know why this disease hit any of us. I do know that when I am feeling like you do I am really glad that the people here know how I feel. Somtimes I think I could write one word and somone would respond because that one word would have meaning to them. It's not easy and somtimes I forget to be greatful for all that I have. I do fall back on faith and hope alot. I believe that there is a cure right around the corner. We just have to stay strong until it comes around. Do you know how totally envious I am of you? My God lady you write novels. I wish I could put my thoughts in words and put them on paper. You may struggle with it but I have never even attempted to do anything like that.

Hang in there lady.

thoughts and prayers are with you

love

carol

Posted 7/30/2007 3:32 PM (GMT 0)
Dear fellow cracker: That was funny. You don't know how much I needed to hear your story today. I am feeling it too. The powers that be... don't let them take the reigns. They will try and yeah, it hurts, but don't let them succeed. This disease brings out the worst in you at times. It is okay. This weekend I think I acted about 4-5 years old. Of course I was treated that way, but I didn't have to give in to it. Thankfully, I regained my composure and acted my age and told everyone off in a rational way that I was not going to tolerate certain treatment even with their best intentions. Go ahead pat the back :) I did.

Marji you are entitled to a little rage and frustration. I had an "off the charts" genius IQ prior to this illness. I am borderline genius now. I feel like I am stupid most of the time. I should be able to accomplish more than I do. I feel the same inside. It just comes out wrong and I have good and bad days. My health inconsistencies make me somewhat unreliable in the proficiency area. I am petrified to leave my easy part-time job. I can barely do this at times. I am angry and think it is pathetic. I still have a lot of capabilities but I don't know what to do with this mis-mosh of skills that I can do and how to hide the ones I can no longer do. In your field, I would gather there are a lot of time limits and you need the utmost confidence. But you can still accomplish this. Finding peace within yourself when the road is this rocky is difficult for the best and brightest of us. Remember yourself and take pride "THIS IS WHO I AM AND THIS IS WHAT I DO". No illness or idiot can take that away from you unless you give it away. We all get bad moments at the worst of times. Think in terms of what you offer not your risks. Minimize your "risks" any way you can. We are all human and we all come with risks. I can already tell you that you have an awful lot to offer and that your risks couldn't even compare, much less out weigh your talents. But you are the one who has to believe this, not me.

So far I see some one who is remarkably intelligent with acute insight and humor. The type of person I see when I read profiles of the best authors. They see things in a way others don't see and can articulate that in a way we can all feel. An artist with a pen instead of a brush. You are that person to me. That is what I see. Except unlike most, you have a big heart. I just don't see the confidence that is rightfully yours. You are not only talented but have earned this. It makes you..you. It should be savored. Others perhaps are seeing your doubts because you are thinking about your imperfections. Show them your talent and let your imperfections become a part of that talent. We all have talents no matter what our weaknesses in life. We just have to acept them and weave them into our lives. Leave your mark. I wish I had some talent that others could always remember me by. You are very fortunate in my book.

Keep trying - with or without an illness, sometimes you just gotta keep beating the door down. Love ya - Kristin
Posted 7/30/2007 9:17 PM (GMT 0)
Hi, Marji. I think we all related to your post. I love your sense of humor. (You must live in my same county at least!) You don't realize how valuable that is! Mine has helped me overcome a whole lot! For those people that frustrate you by their ways, they probably do that while trying to cover for their own insecurities. You have to learn to accept yourself...just as you are, with whatever limitations and health issues exist now. You know you have many positives! Don't let other people take those from you or make you forget about them by lowering your self esteem. It seems funny, me trying to tell you to accept yourself, because it took me nearly 7 years to do that after my accident and now I've had to start all over again since this lupus showed its' ugly head. But I do fully intend to get there again! This disease will not win! It can not. I've already come through so much. Those are the things you have to say to yourself. You know where you've been. You know the work that was required to get you there. Just smile at those people that annoy you and secretly think in the quiet of your mind that they only wish they had your brain and accomplishments to aide them as they do whatever it is that they do. I love sharing our struggles on here because this is an awesome outlet when you need someone to talk to. It is also a great source of encouragement and can hold some much needed information to help with what you're going through. Just stay strong! I know you are very strong, I can hear it in your words. Hold fast-- tongue
Posted 7/31/2007 2:14 AM (GMT 0)
Thank you Kristin and Sharentrials. Your words and understanding means a lot. I fought so hard not to get to this point, trying to look at the good points of being sick--talk about a struggle. I went to college when I was 14 and was very very bright, I was a big fish in a big pond for a while and was really good at the computer work I did. There's a number of issues regarding me returning to work, some I'm comfortable talking about, some I'm not. I just feel so beaten down and cant get a leg up. Its just so stupid here, there is no other way to say it, you know small, microscopic town with one traffic light and when someone graduates highschool it makes the front page. They are just beginning to introduce technology here and doing it all wrong. And unfortunately, I'm on the consumer end, which is usually not the case. We are wasting money and resources, but this town will do things the way they want to and that's it. I don't know what exactly got under my skin,maybe the idiocy of the website design, I don't know. I shouldn't feel jealous, its stupid and unproductive. I haven't written a thing since this foul mood descended.

thanks so much for your kind words Kris and sharen. My brain and looks were what I had and now they are long gone. It's frustrating when you have trouble doing a simple puzzle, or can't remember things from one minute to the next. And you get just enough good days to get you hoping you're on the mend for good, then it all sets in again. I write, but it is a real struggle, not as good as when I was younger. I've never published anything. I don't bother to send them out. I just write them for my kids or to keep me busy, like knitting.

I know so many people have it so much worse and I'm lucky I can still walk around and all, as long as I can dodge the loose pitbulls.. Maybe I need to see the rheumie and find out about my labs so I can know why the sunlight is bothering me so much and see if there isn't some way I can get out. A lot of time just fishing helps.

Kris you said such nice things about me and I really appreciate it. It made me feel better that someone else could see me as someone worthwhile. I feel like you really understand about the mind going, especially when it was just about all you really had as you get older. I can't imagine how people would want to be disabled and sick, think we fake it. My doc warned me that disability can really do a number on you, I tried to look at it like an early retirement due to illness. Well, I need to get out of this funk and get writing again. I am a bit of a broken person due to the way my illness went and how I left work and all. It was far from graceful and I had no family to help me so it was what it was. thanks for the kind words, maybe my confidence will come back with a steroid shot or something. I don't know.

I hope you both are ok. Crackertown is the same as always, only open to change when certain people benefit. Oh well, its where I'm at, it doesn't need to define me. In the woods, we're all the same.
Posted 7/31/2007 5:38 AM (GMT 0)
cured4real/Marji - I know exactly how you feel. After 5 years, I think I've finally found a way to come to terms with it. It's like losing an arm or a leg -- I will never be the acrobat I once was. I have to accept that I have "retired" from my previous profession, my previous mental state, my previous genius. Others may not be doing it as well as I could....but the truth of the matter is that I can't do it as well as I once did either, and banging my head against the wall and constantly disappointing myself isn't a good path. It's better that I find something else -- something where I won't constantly compare my today against my yesterday. As for what the something else is, I have no idea. I found my "bliss" in my previous profession -- it was my life. I've been life-less for 3-4 years. Now to start anew... quite a challenge.
Posted 7/31/2007 8:09 AM (GMT 0)
Marji,

In my opinion, what you describe can be the biggest tragedy of our disease. I'm also working hard to overcome it. What Lynnwood said really struck a cord with me too. Just a few years ago I had an exciting, fast-paced job in the financial industry and was completely independent, financially and othrwise. Now I sit at home and knit.

I was knitting with fellow knitters at our local yarn store the other day and one of the gals whom I've known for over a year started asking questions about my background. When I told her I had been a stockbroker I could see the startled look on her face. She works at the shop and teaches some of the classes so she knows that I have so much difficulty learning how to read patterns and she's real patient with me. But I could see in her eyes that she didn't realize that I hadn't always been "slow". One day I'll talk to her about brain fog.

Later that day someone familiar looking came in and joined us. After several minutes I recognized her as having been a former client. When I spoke and introduced myself to her the look of shock on her face was embarassing for all of us. She couldn't believe this overweight, chipmunk cheeked tired woman was the same slim executive she used to rely on to help her with her investments. It made me sad but I didn't let it get me down. I am who I am. I used to have different talents and abilities, but through my illness I have gained some insights that I think will serve me even better from now on. I've learned to slow down, I've learned to have more empathy when I see strangers walking with canes or walking a little hunched over. I've learned to appreciate the simpler things in life. I've learned to try to enjoy today because we really may not have a tomorrow.

I'm just struggling to love myself as I am so that I can do what Lynnwood said -- learn to start anew. And you're right, Lynnwood, it's quite a challenge. I just know that if I stay stuck in this feeling of loss I'll be losing so much time. At 58 I don't want to lose any more time. I've already lost three years. There's not that much to lose. I also know that with age come other aches and pains and I don't want to be known, especially to my kids, as the sick woman. I'm ready to be a mom, a stepmom, a mother-in-law, and a grandmother again. And a good wife and friend. I haven't been any of those things in three years.

I don't quite know how to start anew but I'm determined to do so. For me, I think it will involve loving myself the way that I am and then taking baby steps. I'm so afraid of causing a flare that I sometimes become imobilized but I'm going to fight that.

Marji, you brought up a great topic.

Love,

Pat
Posted 7/31/2007 5:57 PM (GMT 0)

  Hey Marji: Checking in on you.  It took a long time for me to realize that people don't like change, they like the familiar no matter how inefficient and costly it is.  They see it as more work, not less.  Most people don't see the forest just a tree or two.  I fought with all my teachers growing up, especially math and science.  I could never understand why, even though my theories were correct and more efficient, they would go right back to the book.  I was told to just go with the class and worry about the rest in college.  College was no different, I had to wait for my masters.  At work, employers loved it when I saved them money but not when I tried to change policy.  Computers and law seemed to be a better placement for me.  The possibilities seemed endless and I could almost relate to people.  Well not all attorneys.  Not fond of large egos.  But the Silcone Valley guys were the best.  Miss the computer engineering days.

Speaking of inefficient.  You and I sound like we are wasting our talents.  Another thing I learned is that not only do we judge our environment harshly but ourselves.  Most people don't even recognize our weaknesses because we are considered "normal" now.  We are the only ones who realize this because we know the difference. I bet those books you wrote are still masterpieces.  What are you afraid of?  Rejection or Acceptance?  Me, I am more afraid of not knowing.  Jump, girl, jump.  Work out the bugs later.  Pack em up, close your eyes and just send them. 

Not that I should say much, I am a walking hypocrisy.  I am not a model of efficiency and making the best use of my talents these days.  Just can't seem to get out of my own way anymore.  Maybe it is my form of having a temper tantrum.  The world is not working the way I want it to, much less in my favor.  I figure I will spend at least another 10 years or so bawing about this before I get sick of myself and get on with it.  Now how is that for waste?  Not proud of it, but it is like I'm waiting for something to click on inside of me.  The green light.  I feel as though I have been conditioned to red lights and some yellow.  I just start to go and get knocked down over and over.  Sometimes I never make it out of the gate.  Some how I need to get past this.  I am smart, I should see beyond it.  I am strong, I should be able to defeat it.  I am fast, I should be able to out run it.  What am I missing here?  It is SOooooo Frustrating.  How and when did I get so afraid of my own shadow?

I read the posts.  Look at how talented everyone is.  Amazing.  I am not alone.  But now what do we do?    

Sorry for my jibber jabber. I really feel strongly about you sending your work in to someone who may read it.  Sometimes I just get a gut feeling abouth things.  This is one of them.  Good news, I haven't been wrong yet.  I just gotta get use to listening to myself.  I read my poetry and theories and think others won't get it or will think I am wierd so I am timid about the whole thing.  Always a shock to hear others say that they love it and understand.  Sometimes we don't give ourselves enough credit and sometimes there are parts of us we just aren't ready to share with the world.  I know that if someone attacked my poetry or thoughts that it is an attack that would deeply wound me.  I generally don't open myself up that way.  I am just starting to let others "in" and have more confidence with the "inner" regions of my being. 

It has been attacked.  But I don't buckle down and cower anymore.  I made a new rule.  It isn't acceptable if they attack me or have their opinions shoved at me, however it is acceptable for them to have their own opinions and relay their own experiences.  It is a matter of respect.  If someone doesn't value or respect me, I make it known that their opinions have no value or meaning to me.   

I hope some of this makes sense.  My head is spinning badly the last two days. Can't hold thoughts too well.  Either way, please know I wish you well and want to see you gather well deserved strength during this hard time.  It is just that, a hard time.  I am getting it from all sides too.  It is very difficult to remain strong during these times.  But they go away.  We learn.  Things change.  Love ya - HUGS & prayers - Kristin

Posted 8/1/2007 2:47 AM (GMT 0)
Thanks so much Pat, Lynnwood, Kris. How did this happen to us (rhetorical)? I mean, if you made a movie it'd be like an alien abduction film or something, we all just got sick instead and it changed us. Lynnwood, I so much feel where you are coming from and my heart went out reading it. You're right about the headbanging, sometimes I'm just too stupid or foggy to get out of it. I feel like I accept the loss of capacity, but its only at a certain level and then things will happen and I'll realize I'm not fully accepting it. Like an onion. I know it's not healthy, I try to look forward to the future and to enjoy today, at least I want to be there, I have been in the past. I agree with you Patty, I don't want to be "a sick person", but sometimes when I step out of that, I get scared because the sickness takes me down, like when I worked at my dad's wedding and this last weekend. But the weirdest part of this illness is the mental fog thing. I read the thoughts of you very bright people then look at the list of things happening, knowing that the words don't really describe all that is going on and the severity of it, and I just wonder why the brain fog too. Thank you all so much for your stories, Kris, I will send out something if I can manage to get through and read it, even if I send it to my son and he sends it out. But I find myself making so many grammatical mistakes that I would never have made, linguistic insufficiency, it's called, and is a sign of, among other things, illness. So if you want to be snooty about brain fog communication problems, you can just tell the person you are trying to talk to that you are experiencing "linguistic insufficiency". Wow, am I a geek or what? Not exactly what you want to say on a date, unless you're going out with R2D2. It's stupid the things I remember, but I can't remember my favorite professors name. It's awful, people think I'm rude, I just can't remember their names, I'm very bad with that. Well, fortunately I don't go out much so I don't come up against alot of problems, my doggies accept me, and I appreciate what you have shared with me. I think sometimes there is this undercurrent that happens and we try to overcome things but sometimes just have trouble, or something. I don't want to build up bad feelings or feel bad or jealous of someone, I used to feel lucky for my "life of leisure" and the chance to write I need to get back to that. Patty, my psych eval for social security was by someone who graduated from my alma mater, a small college, and he started asking me about professors and everything I couldn't remember any of it and I was so stumped and slow and I just broke down crying saying "please don't tell them I'm like this"--my professors at that college worked hard to get me into graduate school and I felt that by getting sick I had let them all down. My employers wouldn't recognize me, I had one walk right by me and not know me, my old friends wouldn't recognize me. In many ways I'm grateful because I want them to remember me the way I was, I'm no longer ashamed of being sick, but I just know that they have no time for sick people or anyone not "going somewhere" and they really weren't much as friends anyway. I agree, my illness has made me a better person, more understanding of people who are sick and elderly, especially those that keep on going. I would like to be like that, just not letting it get me down. Maybe I will have grandkids someday and I know that will be a big happy thing for me. I want to start anew too and maybe in a way we are, by talking about this. It can only make us stronger, getting it out. Thank you so much for your stories and letting me know you, you are all such great people and I learn so much from you. You're right, its just a loss of time, like the buddhists told me, "be here now".
Posted 8/1/2007 3:30 AM (GMT 0)
"linguistic insufficiency", huh? That's good. I like to use "cognitive dysfunction" -- it sounds pretty haughty too! I am definitely actively "retiring" from my old (Research PhD) profession and life -- starting a second career in a different place with different friends and a different life. Trying to bang away trying to make the old life fit into my new, injured body isn't making me very happy -- I need to use my lupus restricted but still above average thinking in a new way if I'm ever going to achieve satisfaction again. Everyone is different, your mileage may vary, but for me I'm tired of "wallowing" and am doing research to make an active change. I recently read "over my head: A Doctor's Own Story of Head Injury from the Inside Looking Out", by Claudia L. Osborn. Her descript ions of recovering (or trying to) from brain injury are almost identical to my feelings, sense of loss, and mental re-adjustment required to live with abbreviated mental processes. It isn't fun, but it is reality.
Posted 8/1/2007 3:57 AM (GMT 0)
Hi guys,

Havent' been posting lately, but reading. will do an update soon when my head is screwed on.

this is an aawesome thread. I am honored to be part of this crowd! you are an amazing bunch of women. and you are so right: we are in the process of reinventing oursevles.

just goes to show we may have fog, dysfunction, encephalopathy etc, but we still have a few neurons that can fire at the right times! and i can't begin to imagine what might happen if you harnessed all of this brain power....

xoxo emmie
Posted 8/2/2007 3:13 AM (GMT 0)
Thank you so much to everyone who posted here! I stated in an earlier post, that I fully intend to get back to where I was when I was finally at peace with myself 7 long years after my head injury. (But before this lupus took off.) This is exactly how we do it! We must love ourselves! As I read the return post's here, it helps so much to know that I am not alone. We have all lost so much. I was only 23 years old at the time of my accident. While I did sustain physical changes to my body, that one thing (loss/change) was probably my biggest crippler! You ladies are truly inspirational! Believe in yourself! We have to let go and come to a place where we can simply dismiss "small crazy mistakes", forgetfulness, and our brain taking coffee breaks; as just a part of life. If you look around, you will see numerous people who's brains operate at this same level on a daily basis and they don't have a head injury or lupus for an excuse! yeah Just relax and smile at yourself. We will get through it...together!
Posted 8/2/2007 3:35 AM (GMT 0)
Hey there emmi, cheering us on. I feel privileged too!

Thanks so much, and Lynnwood, I like cognitive dysfunction too. That book sounds great, I'll have to check it out, especially to hear it from a doctor's perspective. If you don't mind, what did you do your research in? I wanted to get a pHD but since I'm a real mushroom type, I figured I would have to teach and though my students said I was good, I always felt I was too easy on them and I felt my memory wasn't good enough to lecture, but I can handle reseach because I can make notes and all. I didn't ever think that was an option. I was an English major. I still think about sometime going back, my thesis was the influence of ancient Egypt on Walt Whitman. I made quite a few discoveries, though how it helps the world other than showing that Whitman scholars are a bunch of racists and Walt was a pretty progressive thinker who I gained a lot of respect for, I don't know.

At least we all seem to have some spare brain cells to lose. I've heard you can be happier when you think less and I'm looking forward to this. Well, I hope I don't have to throw away my pocket protector. Actually, from an artistic standpoint, my illness has been stimulating at times.

When I graduated from grad school and was told I had a year to live with hep, and was having some slight problems my profs were noticing in my writing, stupid mistakes, but anyway, while I was on interferon and suffering so much I taught myself to program, which was easier than what I was doing, and then started a whole new career. I was having horrible autoimmune flares and was on tons of narcotics and other meds and just a real mess, but I managed it somehow out of sheer desperation.

Maybe the fact that we can wallow a little means we're doing better. Like the well-wrought urn, I'd rather have one shaped by real human hands, with the flaws that make it unique and valuable. So I have to proofread more and write different types of things, I remember I found a real freedom and something really clicked in my fiction writing when I got my diagnosis, such as it is, like things made sense and I found that by losing some brain cells more art just happened, instead of overthinking. I wondered why it took so long to happen, what I "wasn't getting" about myself, why I couldn't make the right connections, I was sick! Now that I know, I know myself better and thanks to you all, I'm now excited about reinvention. Maybe I'll even dig out my old research. Much love and thanks for your kind posts. Its so good to get to know you all and to not feel alone and to explore this not by myself so I get it right and don't slip down a slope. Thanks again and much love.
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