With you, Orachel...

Discussion in 'Fibromyalgia Main Forum' started by LollieBoo, Oct 5, 2005.

  1. LollieBoo

    LollieBoo New Member

    I've noticed that it seems the s**t has hit the proverbial fan in your world, Rachel and I thought I'd send you a giant (but very gentle!) hug. You have continued to motivate me with your sharp-shooting wit and honesty, and made me laugh so many times when I didn't feel like even cracking a smile. Your sunny outlook is always so reassuring- never coming off as the annoying brand of optimism that can be irritating when you hurt...

    I just thought it might make you feel better today to know that I admire you. I identify with you in so many ways. Your kind posts have been a much-needed friend, guiding me through this DD on MY hard days!

    Um, I'm quite "wordy", with my "diarrhea of the keyboard" in my usually unsolicited tirades and then I see your long, yet graceful and engaging posts... you are a gem. AND you are 30, out of work for about the same time that I have been, have a sucky, incompetent neurologist who is screwing around ignorantly with your wacky, yet dangerous and scary symptoms... hate to progress your pain meds too quickly, yet find you've become some evil twin of your former self when consumed by pain, have a dream of a hubby whom you cherish and pity at the same time for "putting up" w/ you, and you love little chitlins... Oh, Rachel- you remind me of myself, but with a very natural elegance.

    Today was so rough for you- your STD (!!LOL!) Insurance Company screwed with your family's welfare for too long, now your evil, odd and WAY unpofessional doc seems in on their game- and my heart is broken for you! You so don't deserve this huge platter of bs you're being served.

    BUT, things do happen for a reason and so I'm writing to tell you that, even more than most, I believe in YOUR ability to succeed. Write your book- you have natural talent and can keep any audience captivated- even the exhausted, cranky ones! Do what your heart tells you- and know that there are lots of us on this board rooting for you.

    So... here's not just a wish for a better tomorrow, but for a turning of the tides, that will usher in the bounty of wealth and love and peace and pain-free days that you deserve.

    Take care of you-
    Lollie
  2. LollieBoo

    LollieBoo New Member

    Did you see the OT: A Poet's Heart thread? Francie's idea (rileyearl) for a poetry thread...
  3. orachel

    orachel New Member

    Seriously, darlin...when I saw your post earlier today, I felt so horrific and guilty about not being able to go into more detail in my response...I just cannot imagine what you're dealing with on your own today! Quite frankly, i just didn't want my negative attitude today to make you feel even worse in such a hard time!

    And as for the enormous steaming pile of bs in all of our lives...yes. It does indeed suck in a big way! But none of us are given a choice in the matter. Believe it or not, you are one of the members who I find myself in awe of in reference to your wackiness (cause lets face it....neither of us are overly conventional in our sense of humor!) and constant upbeat posts. So, I guess it goes both ways!

    And as for the book...I've been giving some extremely serious thought to that. First off, I don't have enough research to do an adequate job right at this very moment. Secondly, I'm very interested in a collaboration with a few like minded souls going thru similar (yet different in many ways) trials and tribulations with docs, ins companies, employers, spouses, children, etc....So, keep that in mind as I'm definitely on the lookout for some people to join in this effort with me. I'm thinking a somewhat "fictionalized" account of 4 women (clearly based on each of us...i would be one, of course..need 3 others! lol but with some fictional liberty taken to make the story flow better, be more sympathetic and appealing to the "well" chic lit readers out there, you know?) ..all dealing with different aspects of chronic pain, fm/cfs....almost in a chic lit format.

    Does that make any sense? I think in order to hit the largest audience (and believe you me....a stronger sense of acceptance and tolerance is what I'm going for here...not to mention an entertaining "boost" for fellow sufferers. But I think it be important that The Disease not be 100% all encompassing in the lives of these characters...it should definitely be almost a "fifth character" in terms of its omnipresence (don't we just wish it would go away for a while! lol), but the book would really just be a giant girl talk with back story of these 4 women each with their struggles and successes in life....Sound interesting at all? There were a few other formats that I was throwing around in brain area...nothing decided yet, of course. I'd be very interested in throwing around some ideas with you if at all interested...our stories are similar, but you have 3 children (my stepkids are only with us on the weekend) and have clearly been married longer and had a totally different experience of life than I've had....we've just somehow ended up weirdly similar. Interesting....LOL I've also proposed the idea very generally to rileyearl. Just kinda interested in your input as to whether you think that general format would keep readers (especially the well ones...ignorant of our condition before picking up those books...hopefully all of whom are or are married to physicians who then dedicate their entire lives to free health care and research into this DD....Hey, a girl can dream, right?

    i just cannot believe with all of the schtuff you were dealing with today that you found time to reach out to me like this. Just priceless, really. I had a bit of a minibreakdown....you know the sobbing that you are utterly powerless to control? lovely stuff. Thankfully all that nonsense was mostly done by time Wonder husband returned from work....he was remarkably calm and positive about the whole thing (almost a little too calm actually), and managed to get me to see that this can all be dealt with.

    Finally, I don't even know how you stumbled onto my 'trauma of the day'! I don't think I posted it anywhere where you would see it as I was worried abt bringing you down! lol....maybe my mind is offically flown the coop for the evening. Anyhoo...thanks so much for the kind words.

    It's really nuts...who'd have ever thought that we'd be dealing with something like this at 30?!!! I know it never even entered my mind as a possibility....I liked to think I was a pretty enlightened individual as to the problems of this world, but I really had no earthly clue that people who were at their sickest were treated this way! Che sera, I suppose. We've all gotta deal with it!

    But, though it does seem that my life has been a bit wrought with trauma lately, that's usually not the norm! Want to get that bit of info out there, otherwise ya'll are gonna start running for the hills when you see me coming! AARGH!!! She's got ANOTHER problem!!! LOL.

    Thanks so much for your post. I was already on a bit of an upward spiral (one can only be a hysterical pile of bubbling goo and self pity so long...eventually I had to crawl out and face the world as my back was hurting too badly to stay laying down, plus having some new and wacky sensation that the bottom of my left foot was on fire....does this disease never cease to amaze with the bizarre symptoms?). You're post got me back on track bigtime.

    I'd love to get to work on this book, but first must find a way to consistantly have my readin and writin skills functioning...that is most disturbing, lemme tell you.

    And of course, one must eat...so will have to find a way to earn some sort of a living or wonder husband's head will pop off with all the financial stress.

    Other than that, I'm pretty ready to take on the world, especially those evil eejits at UNUM! Grrrrrrr....

    Speak to good attorney next week who specializes in kicking unum's collective tushies...so that is very very good news!

    Let me know asap how transition into domestic goddess is going. I've been there, done that....I've gotten crafty in ways that martha stewart would abhor, but it keeps me busy (at least when I can do it!). I'm a veritable guru of fun family crafts and stuff. Check out Family Fun magazine...I'm not into the cutesy cutesy stuff for kids, but we always find some amazing nearly free thing to build or create together. Just worried about you going stir crazy, darlin! It can be a bit weird at first. I know you've been home for a while, but I know for me the "official" proclamation would make it a whole different ballgame. Let me know if you need anything.]

    You really just made my evening. Thanks so incredibly much!
    Hugs!
    Rachel



  4. orachel

    orachel New Member

    but there's nothing on it! lol I'm way too much of a woosie to go first...you or francie are gonna have to bite the bullet first, I'm afraid. Poetry hasn't been my forte in many moons...like, since college. Still love it, but pretty dang silly when I write it. Willing to give it a go, but come on! Throw a girl a bone and one of ya'll go first! LOL
  5. LollieBoo

    LollieBoo New Member

    First of all, let me preface any drivel I am about to place to page with the fact that it is midnight-thirty in my neck o' the woods, and I have already taken my "bedtime meds", but alas, am still in pain.

    So to begin with a bang- you are frickin' brilliant and that's my confirmed opinion. Love your ideas- you are such a planner and a doer!

    #2- I have subscribed to Family Fun for so many years it's scary you should mention it! lol- I buy a subscription every year from one of the up-and-coming band kids who get sent out armed with magazine-sales pitches and hopeful eyes- I can't ever turn it down!

    #3- Writer's Market 2006- a rather large book, with a matching price tag ($50). Tells all I imagine there is to know for an upshoot-writer-wannabe to wanna' know. How to get an agent/ contract/ publisher, etc. Who to submit to and what they are looking for and in what format... including magazines. You could (even in your denser brain-fogged days) whip out a good article-length piece in no time. Most magazines I'd noticed I may have some reasonable expectation of contributing to paid $300-$1,100 per article even if not commissioned. Others pay on a scale-per-word... You, luv, could rake it in if you got firing off your guns! You are in a larger area than I am, so perhaps your local library will have the most recent edition. Mine, alack, is a one-horse town lucky to have a library! We do have the 2002 edition. Well it's a good thing that things like magazines and such change so infrequently- hmmph. Wish I had a job so I could have $50! I think I'll beg it off as a Christmas present...

    #4- Oh, dear- I've lost it... Wait- No! Recovery! Sadly enough, #4 was that no, I never thought 30 would look like this for me! Two years ago I was coaching the High School Dance Team, working out with the girls and doing the choreography... I was in better shape than most of the teenagers on the squad! I kept it up into my 7th month of pregnancy with Maggie, my 2-yr-old.

    Felt great, had a serene, peaceful, empowering labor and delivered a healthy, beautiful miracle (after trying for 2 1/2 yrs!). Postpartum, I had some small, niggling complaints of abdominal pain/ twitching and pelvic instability (doc blamed it on high-kicks and splits in my 3rd trimester! LMAO!!!). Finally, it all came to a head with me passing out at work. At a hospital, of all places. I was scheduled for and emergency laparoscopy which was cancelled at the very last second (truly- I had an IV and everything!) because it was revealed that I was pregnant- like within two days of implantation.

    So we knew it was too early to have been the cause of my symptoms, but it was just far enough that it actually showed on the quantitative HcG test. Proof of yet another miracle. DH was speechless for three days. He would look at me and laugh. He would look at our four-month-old daughter and shake his head, laughing.

    --I was so thankful btw that he was a proud papa, b/c when I was around 5 mos. pregnant, I was toting around a nine-month-old baby. People would ooh and ahh at my precious princess, and just as I would catch them looking at my swollen belly- sure they were thinking "Geez, Lady- ever heard of a sit-up? You can only play the postpartum card for so long!", DH would pipe up, bubbling over with excitement- we're expecting another in July, and pat my then-justified tummy. Loved him ten times more every time he did that...

    Anyway, sorry- I'm ahead of myself. Nine weeks into my pregnancy with our young 'un, I was literally Struck with a headache. Slammed me so hard, I fell to the floor. DH freaked out, b/c my mom had a brain hemorrhage @ 33. He picked me up, put me in the car and started driving to the hospital 45 minutes away. I begged him to stop the car, assuring him I would be fine- just b/c I could not tolerate the magnification of every sensation... oh, the movement of the car sent me reeling... I made him turn around and go home (in retrospect that was DUMB!) so I could lay down and make it all stop. It didn't. For six weeks. When it stopped only to restart the next day, I relented and went to the dr. I have been on the medical not-so-merry-go-round ever since. Except for in March when I walked out of my dr's office, claiming, "Well- If there are no tests showing anything, then there is no treatment and so I will assume I am not sick. People just age differently. My body sees thirty coming and has heaved to a grinding halt. there's no medicine to take for that and I'm not going to take medicine for the rest of my life for some invisible condition I my or may not have. If I keep trying to have someone diagnose me properly, I necessarily have to pay attention to each new developing symptom so that I can regurgiate it properly to the correct diagnostician. If I quit trying to be diagnosed with anything, I can ignore what would otherwise be frightening symptoms. If you can tell me there is nothing wrong with my nerves or vascular system in my head- I can go home and ignore these d**n headaches and get on with my life. I can chalk it up to aging." Truth be told, i have never thought of 30 as anywhere remotely near old!

    In spite of my lovely PCP's logic and entreaties, I walked out, promising never to need his nor any of the "specialist's" services ever again in regards to my headaches, weakness, passing out, strange numbness and traveling tingling sensations. Pitiful thing is that it wasn't just a fit- I really meant it. I reported my proclamation of "alternate health" to my DH, who knew not to try to introduce logic or reasoning into my stubborn, senseless head.

    Three months later, DH and I were on our way to a friend's house- 10yo wanted to stay home (I always hesitate even though we live in eensy-town, riddled with grandmas and other relatives...). Long story short (er!- mine never are... you've noticed, no?)- we forgot something- went back, I told DH that as soon as he pulled up to our house, I was going to eject myself and run into the house and catch our clever-yet-helplessly-10yo silly boy in the act of doing something naughty, such as PSII-playing w/out supervision... So, DH pulls up to the back of our house, and I jump out, bounding up the stairs of our deck... DH standing over me (over-calm!), saying "Why are you laying on the deck?" "Good Question." I answered. I found that I had no use of my left arm and that my speech kept slurring. Only I didn't know it. DH would say "I can't understand a word you just said." It was worse than that, but this is already in the Guiness Book of World's Records for the longest-ever wee-hour post. Pare it down to: I jumped back on the not-so-merry-go-round... sucked it up, tucked my tail and crawled back to my dr.

    You'll be happy for me, no doubt when I tell you that in spite of an ER doc's immediate alarm (he claimed all of my symptoms are various functions of one particular area of the brain, and it just so happened to be right where I said I was hurting), and manic-response that suggested he may have been psyching himself up for immediate brain surgery... I am 100% completely meurologically sound. There is nothing suggesting a neurological cause of any of my symptoms.

    Now, I'm no box of rocks, but I have no idea how to counter this inconceivable malpractice so arrogantly flaunted by a neurologist at a top-ranked medical facility. I guess I'm just nuts! Too bad for me- I had a pretty great life before I decided to stop being able to function...

    oops- here I go again, off on cynicism.

    Okay, back on track: #4 was an answer to your probably-hypothetical question 'bout where I thought I'd be at thirty. I thought I ought to first explain alittle of where I am at first (most of the rest you've probably already gleaned from my other posts- you are a sharp one!), but this is SO not what 30 meant for me...

    I am still mourning so many things I feel this DD has taken away from me... When I get over it, I'll move on!

    #5- I am so far gone right now... Sorry for all of the loopy, disjointed thoughts I've strung together here- I'm sure it's a jumbled mess and in the am, I'll look at it and say, "I wrote THAT?"

    If I forgot something I wanted to say, oh you KNOW I'll be back!

    But for now good night.
    -lollie
  6. orachel

    orachel New Member

    Is it me, or did we both try for a brief period to convince ourselves we must be utterly insane because the docs were too idiotic to give us any answers?! The "not knowing" for me was much worse than the diagnosis. Interestingly enough, I don't believe that truly insane people ever really manage to believe that they're insane...so that puts us in the clear, right? Right? I sure hope so.

    If the DD doesn't manage to do me in, I have high hopes for my employer and disability yahoos...not to mention the oh so intelligent doctors who learned a whole heck of a lot in med school, but somehow the concept of being able to "empathize" with patients never found its way in to their training. Let alone the idea that some of us idiotic patients might actually think it wise to do a bit of reading (when possible...not able to do a whole lot of that lately..sob!) or research of our own when FINALLY diagnosed with such a bizarre set of syndromes....When I walk into my docs with any research, ideas etc, he looks at me like I'm the biggest pain in the bum...meanwhile, don't all of the docs say they wish their patients would take more interest and responsibility in their healthcare?! Grrrr...

    Whole dang system needs to be slapped silly.

    Cracking up about you trying to catch your kiddo doing something on the sly....My 8 yr old step daughter gets such a kick out of it when we "catch" her in the process of misbehaving that she seems to go out of her way to get caught! Makes parenting much much easier....she's doing all the work!

    I cannot believe that you first presented with crazy neuro symptoms. So I guess you really knew what I was going thru a few weeks ago, huh? They really to this day have found nothing whatsoever to account for all of the neuro symptoms going on with you?! That makes me totally nuts. How are we supposed to live with hearing the docs say "your brain seems to do wild and crazy things, which we have no idea how to control or why brain got wonky in the first place"...Sheesh. I'm really really hoping that I end up with some more solid answers. This whole sometimes not able to read and write thing has me absolutely terrified.

    Of course, I'm sure it was no picnic finding yourself flayed out on the ground in workplace, either. Boy, are we a big old mess or what?!

    And I'm so very thrilled that you managed to have such a beautiful family (your kids are just incredibly cute!) before this nastiness hit full force. Joseph and I kept putting off having children (well, not like we put it off that long...we've only been married just under 2 years) even though my biological clock (amazingly never activated AT ALL before I fell in love with my husband!) started kicking into overdrive. It always seemed better to wait a few more years till our house was more together (in home improvements...completely stalled since I got sick...up to our EARS), and we had a bit more money, etc.

    Now my biggest fear in many ways is that with my health, and certainly with our finances now, the timing won't ever be right. I love my stepchildren, but we see them every other weekend. I really was looking forward to making a few tiny people with my husband! Well...I guess there's certainly no use in crying over milk that hasn't even been spilled yet! Will deal with that when it comes, but just wanted to let you know how blessed you are to have such a beautiful family.

    I'm doing the whole letter inverting thingie again, so can't type very well right now at all. Must go into battle with insurance and docs....think I'm going to ask for a full suit of armour for christmas...unfortunately, it seems to suit my right now needs better than a brilliant book about writing a brilliant book! LOL As much as I want to get into this thing with both feet running, its really quite wretched to not be able to read properly much of the time. Was really hoping to get some sort of a treatment to at least assist me with my focus, etc with reading and making the words go from my brain out my fingers before I got into writing...It's just too dang frustrating right now. Plus, I've seen a bunch of people here say they have add or adhd.....I've never had anything like that. If anything, I had the opposite. Could sit and read for 10 hours straight if I had the time. I'm wondering, did these ADD and ADHD things come after (as result of) FM/CFS, or were they there ahead of time. I'm really quite concerned that I might have developed something like this...I have the concentration and focus of a common garden variety fruit fly....and its freaking me right the heck out! LOL


    Hope you're doing better today...I'll most likely be mia for rest of day as I have an appt with sleep doctor (which I got dressed for and made my godmother drive me to yesterday...only to realize when the receptionist looked at me reeeaaaaaallly funny that I was there 24 hours early! OY! The embarassment! And this was my 1st appt with this guy, and I'd checked my calendar like 5 times to make sure before I got ready to go!!! My brain is officially on the fritz.

    So, must go to sleep doc appt (TAKE 2!) and then spend afternoon trying to straighten out mess with my doc and unum. Wish me luck, cause seriously...i'm gonna need it. If I get any guff from any of them I'm determined to not freak out...I'll just hang up and tell my atty during consultation on Monday. But I sure as heck hope it doesn't come to that! Last thing I need to do is add lawyers to this mix!!!!

    Happy trails, darlin.
    Rachel
  7. ldbgcoleman

    ldbgcoleman New Member

    I am nosey and read your thread! I have to say the book idae is pretty darn brilliant! I love your threads and would read a book like this ill or well! Great idea! How a DD unites 4 very different women. orachel you have a gift for writing! And Lollie so do you.

    Don't forget that sometimes when a door is closed a window is open and although I am a practical girl one thing I am learning in my old age (43 ha) is that you can make the most of life no matter what situation you are in. Maybe this DD is taking you down a path you had never planned on taking. That is what is happening to me. KEpp up the brainstorming. You guys are definately on the right track! And I want a signed copywhen you are published!! Lynn
  8. ldbgcoleman

    ldbgcoleman New Member

    I love Familly Fun and have given a subscription to my sons teacher for three years now! All three have told me they love it! L
  9. orachel

    orachel New Member

    ...other peoples threads if they seem interesting. This is an open forum, after all! If its clearly very private info i'll bop right out, but we're just chatting away trying to stay as upbeat as possible! lol

    Always look forward to hearing from you, anyway! LOL

    Thanks for the vote of confidence on the book idea. I'm looking forward to finding a way to focus on this bigtime in the future, but unfortunately, right now, its kind of day by day for me. I'm certainly looking for input from many of my favorite members here (of which you are one! ;)) because so much of the "story" that goes thru my mind when I think of this idea isn't my own story...but kind of based on bits and pieces I've garnered from everyone here being so open and honest about their struggles and successes. Of course, we're talking fiction here, but I'm in no way clever enough or experienced enough to have "imagined" all the amazing stories of the people who post here. If they inspired me and gave me hope, I'm hoping a fictionalized version of similar tale will inspire others.

    Looking forward to speaking with you soon!
    Rachel
  10. fivesue

    fivesue New Member

    Don't put yourself down! As I read through your notes, I think that you are "graceful and engaging" also, and the content of you posts tells me you're a "gem," also! (-:

    You and Rachel have so much in common; the traits that stand out to me the most are both of you are intelligent and articulate, charming and funny! You two add joy and reality to this board. Thank you both.

    I am sorry that the DD has found you both at such a young age, but with your personalities and support, you guys will overcome. Hang in there!

    Big hugs,
    Sue
  11. orachel

    orachel New Member

    Lollie's so sweet and supportive herself, but I guess its hard for all of us to see the best traits in "ourselves", even when we can notice glimmers of them in others. I do the same, I'm afraid.

    We are all such flawed and unique individuals! LOL

    Fivesue....I just wanted to let you know that an English teacher my Junior year in high school (will never forget her...Sister Mary Hope) was the single greatest inspirational influence in my life other than my own mother. You English teachers just rock! I really don't know how you do it....I see the average child's ability to read and express themselves in written word and it just makes me sad, especially in an inner city school environment. I'm just not sure how these kids are supposed to be able to succeed in life if they can't properly express their feelings or ideas!

    That for me...the interruption in ability to "express" what I'm thinking by writing or typing or talking...is by FAR the most frustrating aspect of this illness. Especially when my "thinking" doesn't turn off...I just can't get it out on paper or out of my mouth! Honestly, as soon as I have the strength I think I'd love to do some work to assist stroke patients in recovery, because it is certainly frustrating to me, and my symptoms come and go in severity! I cannot conceive of trying to "relearn" all written and oral skills from scratch, especially when you add in partial paralyisis.

    I guess that's a good thing for us all to remember. No matter how bad off we are in our physical and neurological states....

    Sorry, was interrupted briefly! LOL

    ...no matter how bad off we are every day, my godmother has what we call her "MY LEFT FOOT" theory (you know the great movie with daniel day lewis?)....there's always someone out there perservering against much much greater pain and struggles. Oh well...helps me sleep (a bit! LOL) at night.

    Hugs to all,
    Rachel
    [This Message was Edited on 10/06/2005]
  12. ldbgcoleman

    ldbgcoleman New Member

    Why don't you get one of those little tape recorders and just dictate your ideas and story for now! You simply cannot let this idea go! I read a ton and I love the chick lit books but mostly the ones that are more than funny if you know what I mean. You have such a perfect and natural idea for a great story with endless possibilities.

    This DD really bonds us together so solidly. I have something in common with such a diverse group including college students and older ladies. We are all living the human condition. Also some have been going through this for years others only a short time. ECT... I wish I could write! We have also learned alot and I mean alot and there are villans (OK so not all Drs are villans!HA)

    And seriously Lollie I am in your fan club as well and you have some gorgeous children!

    lauren Hildebrand wrote SeaBisquit and she has a serious case of CFS. It took her years to write but she did it one page at a time. I am constantly amazed at what people faced with all kinds of adversity can accomplish! You both have the spirit! Lynn
  13. LollieBoo

    LollieBoo New Member

    LOL- DH and I have had this conversation b4- If I question my sanity, then obviously I'm sane... right? Oh... it plays back like a bad Monty Python skit!

    My odd neuro symptoms have been explained thus: I have a capillary-only vasculitis, as evidenced by skin manifestations. It is dx in my skin by biopsy through my dermatologist, who suggested that the question as to whether or not there is systemic capillary involvement should be reviewed by my rheumy and neuro. (Sidebar- Systemic involvement affecting the joints would cause "migrating" joint pains, characterized by a deep aching with some shooting pains. This is what made me start to feel like an idiot for mentioning my pain to anybody- I felt like the hypochondriac limping on one foot one day and the other the next!! Capillary vasculitis in the CNS would be characterized by stroke-like symptoms and a sort of occasional "system deregulation" that would dissipate and clear within several hours to days, leaving essentially no lasting damage... all this as per the dermatologist WHOSE SON, BTW- was on the "Average Joe" reality show!lol!)

    Anyway, Rheumy said she was vexed by this possibility, b/c w/ a "true" vasculitis, you would expect to see a much higher sed rate than what mine had been, but as we were talking capillaries-only, she said that it would be so rare, it may be best to go somewhere that specializes in those types of disorders.

    So, I contacted Johns Hopkins' Vasculitis Center... detailed my symptoms, outlined various test results, etc. The response was that although systemic involvement does seem highly likely based on the evidence presented, dx could only be made by personal physical evaluation in their clinic. AND, it further noted, that CNS involvement at the capillary-level would not be evident on either MRI or MRA imaging studies. The only way to obtain a solid dx would be to have a brain biopsy. There is still a 25% chance of a false negative result. And I'd have a hole in my skull!

    At that point, I wondered how important it truly is to obtain a solid dx, or if an assumption could just be made based on the symptom patterns.

    Upon mentioning this to my neuro, she agreed that it would not have shown up on the MRI/MRA, which is the only dx testing she had ordered, and that it was indeed very difficult to dx and was so often missed because of the combination of somewhat sudden, and diffuse presentations of the symptoms. At which point, she sort of wrinkled up her nose, leaned forward and said, "You don't have a capillary vasculitis in your brain. There are no neurological abnormalities present at all- You're fine!"

    I looked at her in stunned disbelief, wanting to say, "You are such a BRILLIANT diagnostician that you are willing to stake my life on two tests and a hunch?" or "My mother had a brain hemorrhage at the age of 33, and you are that willing to dismiss me!" or "Is this just your way of saying I'm not a desirable patient, b/c you can't be serious!"

    But instead, she threw out her hands and said, "What- that's a good thing! You should be happy!"

    I said, "I would be if there was something valid to base it upon."

    So that is where I have ended up in my quest to identify my neuro problems. I am sort of idly hoping that I see a marked improvement with the progression of my Neurontin. So far, I have noticed fewer visual disturbances. (I would lose vision in one eye or the other... or just peripheral vision or just central vision. It wasn't predictable. Sometimes I had a headache, sometimes, I'd just be sitting there and- oopp- there goes my left eye! DH got used to it; he'd say, "Let me know when it's back..." It didn't go entirely- just very opaquely blurry. Opthamologist suggested "Ocular Migraines" or a vascular irritation around the optic nerves.)

    Sue- I second what Rachel said, but my darling, daring, motivating English teacher was M.Lee Petty- she pushed me and many others to excel with her feverish enthusiasm for the written and spoken word. She was a card- and she encouraged me to pursue public speaking as well, which has helped me tremendously throughout my life! Also, I had another, creative writing instructor- he had Spina Bifida and was never going to make it to adulthood, never going to walk, never going to amount to much of anything, his mother was told. I lived across the street from her when I was 9 years old and I would go over to her house almost daily. She would show me pictures of her son, the teacher at the HS, the diving coach and the man who'd overcome every obstacle put in his path. Years passed and I remembered hearing that she'd passed away and I was so sad, but then, in my Senior Year, found myself a student of Mr. Bird's... he was an inspiration and a genius. He won the Disney Teacher of the Year Award that year. He proclaimed, before he left for the awards ceremony in CA, that if he won, he was going to walk up to the stage with his crutches (he only used them to stand briefly). When he got back, after having won and been wheeled to the stage in his wheelchair-- he beamed "I wouldn't have walked if they'd paid me the minute I found out Paula Abdul would be pushing me up there!!" You will be remembered long into the lives of your students... Count on it.

    And now, back to Rachel! (I have to take my replies item-by-item or I'm lost!) I used to be the most meticulous multi-tasker. My efficiency has gone out the window. I search for easy words when I am talking, and bungle up my writing- I understand your frustration. No ideas other than acceptance of your newest qualities and meditation! I don't know if that means I'm selling myself short or giving up, but it seems so much easier than battling drs!

    My wonderful FIL had a stroke which left his R side limp and weak and caused expressive aphasia. He was told he'd never walk or work- he'd be bedridden. His response? "S**t..."

    Not only did he walk, but he got back to fishing the WI River every day (there were times we worried- and once he tipped his boat and had to float downriver, but was alright), was able to keep busy gardening until the summer just before he died of lung cancer- that summer we did the gardening and he oversaw our efforts. (It went something like this: "NO! There!"
    "What, Papa- you don't want the potatoes here?"
    "Beans"
    "I thought we were planting the beans over there."
    "No- well, yes... s**t. Cauliflower."
    "Oh. You want cauliflower here?"
    "Yes. No- d**n it... Kohlrabi."
    "OH- Kohlrabi goes here and potatoes over there."
    "Well. ...s**t."
    It was chaos, but a labor of love on both parts- ours to hoe and plant and tend a huge garden that one man with a lot of know-how had done on his own for years. His was a struggle to communicate and be understood. I had 20 minute conversations with him, trying to clarify one sentence. I wouldn't let him give up or give in. We'd keep at it until I understood. He knew he was important and that his opinion was valued, even if it took a lot of effort to find out what it was. Funny- for as much as he struggled to communicate- he could always spit out a cuss word or two! He had been a brash, arrogant man in his youth and his stroke changed him. But it didn't disable him.

    Unfortunately, Agent-Orange-triggered lung cancer did. My DH (SO reluctantly) and I were there the night he passed away. My MIL needed a break, and so I'd volunteered us to stay the night. I held my FIL and coaxed him through the night, pushing the nurse to keep him comfortable. I urged him to relax and tried my best to calm him. He passed away in the early morning- peacefully. Nothing has ever meant more to me than the connection that I had with that man, or that I was able to be there with him when he was called to heaven.

    Having worked in an acute-care hospital setting and a nursing-home setting, I have been involved with many stroke victims' lives. It is humbling and frightening and there need to be more people like you reaching out.

    There is a sort of synchronicity in our lives, Rachel- odd similarities and coincidences... like Lynn suggested, I have certainly been led down an unexpected path. I feel like there must be a reason, and you all have already given me so many reasons to explore this "path" willingly!

    Rachel, I hope things went well today- let us know!

    Thanks Again,
    Lollie
  14. fivesue

    fivesue New Member

    YOU are the students that make teaching so fulfilling! You are the ones who see the beauty and the practical side of the English language; you bloom into the articulate people this world so needs.

    But, other students who don't achieve your level are rewarding, also. I have had homeless students who have nothing stable in their lives except school, and they knew that in my classroom they were just as important and just a valued as the kid who lived in a mansion. Some of them were wonderful thinkers, brilliant, but untaught. It was great when they discovered their voices and started to bloom. What else could be that rewarding?

    Alas, I do miss teaching. I had to quit in 2001 because of health issues. I tried for three years prior to hang in there, but it became impossible...and I do miss it, but I don't miss the stress of trying to keep up and provide the best classes when I was struggling just to get up in the AM. We all know about that. But, I did have a great time while it lasted.

    I look forward to reading your comments...it will seem like old times. (-: I'm so glad you had such wonderful teachers, and if you ever get a chance, write them notes and tell them; you don't know how special that will be.

    Love to both,
    Sue
  15. lovethesun

    lovethesun New Member

    Just enjoying your posts and trying to get to know you better!Linda
  16. Seeseaisme

    Seeseaisme New Member

    Orachel and lollieboo, I love reading your all's post. I'm from the South, can you tell (lol).

    You are both beautiful people from the inside out. I think your similarities are scary.

    Just wanted to let you know how much pleasure I get from your posts. Also wanted to ask if either of you have considered the guaifenesin protocol. It is working for me.

    Just had my check up with the nurse practioner I see and my improvements are outstanding. In June, the nurse and I were afraid I would have to quit work and was in danger of becoming bed-ridden. Yes, guaifenesin has helped that much.

    Check out my profile and for info on guaifenesin, check out the posts on the message board in title search.

    I hope you both find joy in your day and wish you the best and will be looking forward to reading more from both of you. I believe attitude has so much to do with this dd. We should control the pain and the fibromyalgia, it should not control us. I have so much more I would like to say to you guys, but I'm tired, working 40hrs wk here and I need to give myself some rest. Lots of caring thoughts sent your way, girls. Charlotte
  17. rileyearl

    rileyearl New Member

    I want to play. I'm the exact same mental age as you two! I did my life backwards by choice, I had childhood until 35, which I now realize was my retirement. I'm going to have to work until I'm 110. This latest dd wrinkle is going to make that tricky.

    I love the book idea. What if each of the women embodied an aspect of a woman's life? ie physical, emotional, intellectual, spiritual? And does one of them have to die at the end to make it a tearjerker movie? Can it be the one who exercises all the time, pleeeease?

    I've been down and out for the past couple of weeks. Pain, pain and more pain. Everyday I'm on the every 6 hours one of mother's little helpers schedule. Yuck.

    And I'm heading my little retail empire into holiday spending by receiving giant boxes full of goodies for my customers to buy. My living room is currently full of closeout men's underwear--570 pieces to be exact. Luckily, a lot of it is novelty Christmas underpants. Do you know anyone who needs an elf suit in the guise of boxer shorts? Or a very small Santa suit/thong? My neighbors must think I'm a pervert, sitting on the front porch sorting mens underwear. That's how I spent the afternoon yesterday. At least the sun was shining! In Seattle! My arms hurt today. Those little trinkets are so heavy!

    I'm going to look for that poem I promised to post right now.

    Love you both!

    Francie
  18. orachel

    orachel New Member

    I've read all of the recent posts, but am a bit to emotionally frazzly after prayer circle to respond to all now....

    You guys really all keep me going, you know? Is is me, or do you actually feel stronger and more worthwhile when you're propping someone else up just a bit? There is definitely something to that. I'm beginning to question whether the concept of "giving of onesself selflessly" is possible. Just by the act of giving or helping we receive so much in return.

    Will talk to you all very very soon..

    Riley...i'm sure I can take a few pairs of those boxers off your hands for hubby for xmas. Between docs and insurance and lawyers, oh my! I've been totally nutty. I've wanted 10 minutes to myself to check out your goodies for weeks and just haven't been able to do it! Perhaps subconscious keeping me away until a bit more financially "flush". I am hopeless when it comes to sticking to a budget if some little gift is going to crack someone up...that's just priceless. And btw...if someone kicks off in the book, it'll definitely be someone totally ridiculously physically perfect...that's just a little karmic justice. But not a dance instructor or anyone in aerobics, as our lollie was very involved in that! Must be irritating Hooters girl, or something. lol

    Huge hugs to all of you....
    Thanks for sending me off to sleep with prayer in my heart and a smile on my face...that's the best way to go!
    Rachel
  19. LollieBoo

    LollieBoo New Member

    My DH is looking at me funny-- I don't think I'll explain!

    I am intrigued by the four different facets... but the one dying at the end-- I imagine it everytime I'm struggling, trying to keep up with my treadmill (why does it seem to be picking up speed?)... I think I may go flying off the end! There's a sort of "rip cord" that you are supposed to attach to yourself in case of, I presume, that eventuality- it will kill the machine- but I never do. I'm sure it will one day lead to my traumatic demise! And you want to capitalize on it... exploit my naivete for your Hollywood tear-jerker?? Francie- I am apalled! (Like the drama?)

    Sue, you have to know that the way you have touched lives will remain forever- even (and in some cases, especially) with those for whom English was not a favorite subject! About 4 years ago, my brother and I "haunted" our old school... it was K-12... all in one building. We visited our teachers and reminisced- we were both surprised to learn that our teachers remembered us, too. Even things we wished they'd forgotten! I guess we thought it made sense for us to remember one person, but it is amazing to think that one person can hold in their hearts each child whose lives they've touched, when the rosters change from year to year. I think that many more people would contact their past teachers if they knew that teachers remembered them, too.

    Charlotte- I haven't tried the guai protocol and know little about it, but as I already avoid all salicylates anyway, that part would be easy! I'm originally from the south, although I grew up plumb in the center of the midwest.

    It's so nice to get to see other people's personalities...

    Talk Soon!
    Lollie
  20. LollieBoo

    LollieBoo New Member

    I just looked back over this thread and how come I didn't notice your wonderful comments before? I must have been typing while it posted- who knows!

    Anyway, you are so right about Rachel. She really has a fabulous idea, and as my aforementioned creative writing teacher always said "write what you know". You have such a wonderful talent for writing in a way that draws people in, makes them want to keep reading, and often makes your reader feel personally vested in what you are writing. You can't go wrong. Really. And utilizing the backgrounds and stories of the people on this board is such a great idea as well, like Lynn said- there is such amazing diversity among all of our similarities.

    I think it is important for sufferers and non-sufferers alike (as well as those docs Rachel mentioned need to read it!) to realize that we all have different stories- it is not something that I did that made me ill. I had the same chance of developing FMS whether I'd smoked, done drugs, drank alcohol every day of my life or was a teetotaler, never smoked or done drugs. It is not because we were sedentary or had a poor diet that we have Fibromyalgia. It is important for those of us who have the disease and beat ourselves up, trying to figure out what we could've done different to avoid it and it is important to help non-sufferers understand. In many ways we are so alike. Our suffering is real and no one is immune!

    So, thank you for your sweetness and enthusiasm, Lynn. You are always such a bright ray- my family is a bunch of yahoos and we have a blast! Without them, I'd be lost! Thank you.

    Rachel- one way or another, we are going to make you follow this through- even if four of us each need to write a different character! It has become your duty to make this happen... cue patriotic, motivational music here...!

    I hope you are all having a relaxing weekend and Rachel, that you've been resting up and relaxing from your crazy week. You can tackle those unum weinies and that schizophrenic doc later. Put your feet up and give DH some lotion!!lol!

    Take care, all!
    Lollie