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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
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Posted: Mon Nov 28th, 2005 17:16 |
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Thank you for your posts Bonnie,
As reported, your meds are mino25/12hrs....beni40/6hrs and still having some problems, the new info re Benicar is - a reduced dose of Benicar (but no less than 20mg every 6 hours) may be trialed. this may give you more relief. Let us know if you have any questions..
If you are concerned do not hesitate to contact your Dr..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Bonnie2
Member in Phase 2
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Posted: Wed Nov 30th, 2005 12:49 |
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2bonnie here,had to be in sun yesterday several hrs,even tho heavily protected,pain bad,then my oxygen alarm went off at 1am,waited till 5am to recieve oxy from provider,long story short,was exhaustedand missed noon,midevevning doses of both beni/mino/feel like dying,called p.bso for at least 24 hrs min will be doing beni//40/4hrs----mino/25/6hrs till swelling everywhere is settling,if not better by fri.will post for advice,till then blessings,also the mountains here got snow dumped yesterday,the news showed just beautiful,I used to live up there but my health caused me to become a flatlander to be closer to the hospital.when it snowed would make rootbeer slushies with the snow,so to feel better today had son get me snowcone from local place with just a squirt of rootbeer  I absolutely know that I will feel better,as I recall the "okra"incident  2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Thu Dec 1st, 2005 03:14 |
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doin waaaaaaaay better thanx p.b...will resume mino/beni as before
Happy Holidays
2bonnie out
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Sun Dec 4th, 2005 18:54 |
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| blessings all,am doing better,have resumed mino/25/12hrs-beni/40/6hrs*note tried beni at 20mg and herxing became really apparent feel more comfortable where I am at now although was close to time of sun exposure,so will try beni at lower dose again in wk or so,cold weather is really causing joint pain,but warm water works wonders,for my hands just soaking them with warm as can stand helps lots,learned that trick from physical theraphist,works well for feet also.My godmother made me a woolen scarf,I wear all the time,amazing how it keeps stiffness out of the cervical area,also am making different size "pillows"that lay flat stuffed w/corn feed(corn fed to cows)you can pop them in the microwave or oven to warm,1min.totest heat then place in stiff area,will need to have the pillow made in thick cotton material,then can make case just like regular pillow so can wash the "pillow case" when needed,if keep mirowave at low temps. when heating up this pillow will last loooooooong time,I found that using rice,beans as fillers dont and will burn before 1st winter is over+makes a wonderful gift of healing
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Tue Dec 6th, 2005 11:13 |
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| am feeling extremely well,think I will try the mino at 25mg/1day,beni/at usual 40mg-6hrs,feel as tho am not herxing at all except joint discomfort from cold.still no swelling of joints,and have dr.appt prior to xmas so think will get d's testing and a.c.e also,xray as am tolerating cigarette smoke of others where before was EXTREMELY intolerable,also accidently forgot to put on oxygen and fell asleep on couch,but woke up on my own several hours later,it's absolutely incredible how I am feeling,could Ibe getting very close to stage 2 early,p.s,Feel that mindset and not dwelling or telling anyone new in my life about my dis-ease is major factor in my seemingly miraculous healing,reaffirming this by having pictures of myself in happy times on frigerator,cabinets,only waqtching positve shows on t.v helps lotsas apposed to watching the law&order shows,I now only watch the animal planet,discovery,and the wisdom channel which onlys shows positive healing techniques,book reviews ect.I hear&see people in my dr.s office,everyone kinda looks at you with this sickness in their eyes,then theirs me,smiling talking to those who look the saddest,(excuse me,you really look down today,but the coloryour wearing really just is beautiful on you,oryou know you don't look well today but I can see that you gave the ladies a run for their money when you felt better,your still quite a looker for a man your age)It broke my heart when dr.told me that I was so close to death,that seems so long ago.............loving yourself so that you can pass that seed onto others is really a win-win situation,one I am finding can and is saving my life,so don't worry........just be happyplease advise if staff feels mino can go to 1 a dayand blessings for your work 2bonnie out
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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Posted: Tue Dec 6th, 2005 15:08 |
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Hi Bonnie,
It's great to know that you are feeling better after struggling so long.
Your attitude is marvelous. I hope it's contagious. Focusing on the positive should help cope with Herx symptoms.
If you think you can handle a little Herx, then it is fine to space your mino out to every 24 hours.
Best,
Meg
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P.Bear R.N.
Inactive Staff
| Joined: | Fri Dec 3rd, 2004 |
| Location: | USA |
| Posts: | 2125 |
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Posted: Tue Dec 6th, 2005 19:23 |
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| Bonnie , good to see you are doing well, and that you survived sleeping sans o2. let anyone smoke in your home! Any smoke is an irritant and is really bad for your lungs so put your foot down and at the very least make them go into a closed up room. best, P.B.
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Bonnie2
Member in Phase 2
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Posted: Wed Dec 7th, 2005 08:31 |
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| firstly p.b.,I love you,and sorry I scared you,I meant that the smokers of the outside world,NOT IN MY HOME<STEVE HAS NEVER SMOKED,when I quit 8yrs ago nowit became rule in stone that no smoking allowed was in house OF ANY KIND,cannabis smoking is done w/vaporizer,so is no smoke and even that is done in room with window open as I don't want to blow up,but the cigarette smoking is I meant when I go out,like we just had christmas parade and before walking by a smoker 'bout killed me,but when out I noticed that it has gotten better tho ........I don't like it,so p.b it's ok......ok?I would never allow cigarettes in my home.so anyway am on first day where mino is 24 hrs,so not looking forward to tommorrow,but I am looking forward to killing those boogers,so wish me luck that I herx,but not to muchxoxoxoxoxoxoxxooxooxoxoxooxooxxooxoxooox2bonnie out....p.s. Dr. visit is the 12th,so will get updates for the new year as for some reason if I start off with positive new year the next is better
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Sat Dec 10th, 2005 10:53 |
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| am noticing the herxing,rally bad nasal drip,not cold but like before,bowel problems way better,are moving on own everyday w/o lactulose so will discontinue unless needed again,breathing is unbelievable,was able to go and harvest low growing mistletoe w/spectacularly white berries all over.I use sprigs on gifts,make broaches,put ribbons/sparkles of gold,silver or red/green.Was lucky to find the bunch on old oak,it was as if they were waiting for meI was able to walk a 4-5 step incline to a low branch/back to van w/no shortness of breatham finding that herxing is prevelent in my brain again,with being "drunk"kinda walk or just leaning sensation,feet on fire& severe shoulder pain also apparent daily,so here we go,but am wanting to herx as I have felt good for 3-4 wks,o2 is way better,so have been at 25mino/24hrs.......20beni/6hrs, now the fourth day,have noticed stutter back,but biggest concern is balance issue,don't want to fall,but don,t want to go backwards.finally got my oxygen holder for my chair,now that I don't use it really,tho always keep a full tank in my van beside my chair if neededam not getting flu shot,never got one tho,Dr.,always trying to give to me every year.don't put whats not needed in my bodyvery diligent about this philosophy.did have a tbls,well ok 2 of some spiked nog,its xmas,also was wondering,by the way if can have wine which is traditional in family unit at xmas,even just small amount.HAVE A HOLLY JOLLY XMAS THIS YEAR ALL ,p.s am taking beni at 20mg as am trying what barb suggested prior post,if I mis understood let me know ...thanx for all the work blessings
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Sat Dec 10th, 2005 10:56 |
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| am noticing the herxing,rally bad nasal drip,not cold but like before,bowel problems way better,are moving on own everyday w/o lactulose so will discontinue unless needed again,breathing is unbelievable,was able to go and harvest low growing mistletoe w/spectacularly white berries all over.I use sprigs on gifts,make broaches,put ribbons/sparkles of gold,silver or red/green.Was lucky to find the bunch on old oak,it was as if they were waiting for meI was able to walk a 4-5 step incline to a low branch/back to van w/no shortness of breatham finding that herxing is prevelent in my brain again,with being "drunk"kinda walk or just leaning sensation,feet on fire& severe shoulder pain also apparent daily,so here we go,but am wanting to herx as I have felt good for 3-4 wks,o2 is way better,so have been at 25mino/24hrs.......20beni/6hrs, now the fourth day,have noticed stutter back,but biggest concern is balance issue,don't want to fall,but don,t want to go backwards.finally got my oxygen holder for my chair,now that I don't use it really,tho always keep a full tank in my van beside my chair if neededam not getting flu shot,never got one tho,Dr.,always trying to give to me every year.don't put whats not needed in my bodyvery diligent about this philosophy.did have a tbls,well ok 2 of some spiked nog,its xmas,also was wondering,by the way if can have wine which is traditional in family unit at xmas,even just small amount.HAVE A HOLLY JOLLY XMAS THIS YEAR ALL ,p.s am taking beni at 20mg as am trying what barb suggested prior post,if I mis understood let me know ...thanx for all the work blessings
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Foundation Staff
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Posted: Sat Dec 10th, 2005 15:24 |
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Bonnie,
It's so nice to read about all your improvements.
This thread, Wine & the MP, will answer your questions about alcohol.
Best,
Meg
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Bonnie2
Member in Phase 2
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Posted: Sun Dec 11th, 2005 09:18 |
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| 1st thanx meg for the thread,and herxing has moved from shoulders to knees,nose dripping,but very little,thank goodness for spell check,cuz am having problem with hitting right buttons to post,is taking longer than it should,but thinking maybe should let staff review the loss of control having in eye to hand co-ordination,has anyone thought of studying this factor of the herxng,this and the drunk walk I call it,or the feeling when going downsairs when herxing,seems like the steps don't feel as deeply as they actually are,so get kind of stumbling going on,now need someone on each side,so not to fall.legs just feel uncontrollable at times,like a weeble wobbleshave started the stuttering once againnnnoot ccccomppplllaaaininnng,just lettin ya know,allover pain coming back,but mainly muscular more than joint,but insomnia workin itself out,just want to sleep again just like when started.so am sleeping beter,see dr. tommorrow so will ask for tests discussed before,think will get new !,25-d as that was the troublsome one,think last time was 130ishand 25-d was 16,will up beni/20 to 40 for day/so as am going in sun tommorrow,It's sat. right?no waitafter midnight so ya I am right,yeah monday 1:45 is time dr.,wow see what I mean handth...han...eye to hand stuff is off-co-ordimation,shoot see so untill I get better from brain herxing will use spellcheck unless you want to see me real poet?damn,post.......,its like I know I type in the right words then I look and their totally different then ,than I know I typed in,hope thats making sense,it certainly does to mehappy holidays,have to take public transithere when am like this cuz don't have full attentuon when driving,so bundle up good2b0nnie out
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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BARNEY
Moderator
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Posted: Sun Dec 11th, 2005 20:26 |
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Yes, Bonnie, I had that same problem here while back. It has actually gotten a little better now. I typed for a living for years and when this started happening it actually got funny but also annoying as it took a while to type my posts, having to keep typing the same thing over and over until I got it right.
Hang in there, this too will pass.
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Bonnie2
Member in Phase 2
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Posted: Wed Dec 14th, 2005 08:02 |
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thanx barneyfor the reassurrance that this will pass.Ijust find it fascinating that the occuranse of herxing for me was the lungs&heart.As you recall it got pretty scarry for me in the begining.In any case so much is happening in my life that is possible and it involves journalismso you can see my dilema in trying to (dilemna)get what I need to do.I have just been asked to do a piece that is a minimum 600 words on why I go to my board of supervisors every tues.,besides writing the shameless agitator column in the medical journal monthly.So my post reports;tried skipping the mino25/every other day,but it "jacked me up"I am just wondering why the herxing is so prevelent in my brain&seemingly nervous system,I am referring to the sock neuropathy w/burning am having now todaycramping in toes&calves,so took mino25instead of skipping today,so will stay at mino/25/24hrs beni/20/6hrs.found today after mino leveled out on neuropathy socks&improvement on concentration,posting.thought bowel was working out but have been unable to have movement 3 days now so decided to start again on the lactulose till everything mellows out.used cannabis tinture for my toes cramping and hip pain,so good sleep is assured,w/o ambien and valium.have made committment to get off pain meds. to myself with the most harm reduction to self.pain for me now is more a nuisance,whereas before it put me in a place of a very deep dispair,but being the survivor That We ALL ARE,or we wouldn't be hereI trust that all will work out for us all & and am looking forward to the next year,just very curious who will be running for president on both sides,to bad my party doesn,t have a say or stance,but is european option,the green party2bonnie out,p.s and whats up with certain people being offended by saying happy holidays,duh just a reminder we are people not "sheeple"So please don't become a victum of the war on christmasLast edited on Wed Dec 14th, 2005 08:42 by Bonnie2
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
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Posted: Wed Dec 14th, 2005 08:59 |
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Bonnie
Thanks for posting.. this FAQ may be helpful What is a neuro Herx? and Amygdala
take care, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Bonnie2
Member in Phase 2
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Posted: Thu Jan 5th, 2006 06:44 |
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| 2bonnie here,long time no post!!!!!am doing ok,fell 3 days ago,I guess I partied just a little to much on new yearsI'm old enough.so am at beni/40----mino/25daily....beni is at 6hrs,am herxing pretty bad,before i fell.actually I have been a bad girl,cheated on diet,but am learning lesson,trust me,who would think one ok 2 pieces of the best chocolate cheesecake would be like eating cyanide,stupid me,I'm all,I can have cream cheese,but no sugar,and found out other thing,cheesecake has mucho eggs in it,never knew that.anyway live and sufferbut am hurting mostly from fall,I don't think that herxing is the problem of me being a weeble wobble,I think it is because my hips are just really stiff from this weird weather,if you watch the u.s. news,you might have seen where we nare starting to float away..........so the weather has always bothered meafter the first frost,but its the knees,hips toes,fingers,BUT.......BUT NO ABSOLUTELY NO SWELLING!!!!!!!!!!!!!!!This time of yeareverything would be soooswollen that just getting out of bed would have been a miracle.The fall did hurt me badly,bruised hip/shoulder/wrist on right side.Am experiencing numbness very prevalent in right hand,had xrays at emergency,nothing broken,but definately could see many differences in the shoulder muscles.P.B has advised to see Dr. if numbness hasn't left in 5-7days,am on 5th,will see him on fri.Have had to add higher pain dosage,now 80mgoxycontin/daily and 4 percacetinstead of 2 daily if needed for breakthrough pain.anyway here's my moment of ZEN,then I'm outIt is said We All have one thing in common,We are born to Die.....then let us spend our prescious moments here to create from that within us(the formless)into the world(the form)A most wonderous Beautiful new self & world,all you have to do is say the magic words.....I AM. 2bonnie out
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Thu Jan 5th, 2006 08:43 |
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Dedicated to those who have learned how to moondance
As I lay in my slumber......listening,I hear the wind call my name.The chimes in the trees are dancing,then the dance stops....as the wind does also the same
The Songs of the Winds,the chimes again...start to dance & play,Harmonious Voices calling...softly,carry me far,up & away
A place in a dream,wonderous still,tho' I've dreamntbefore many times...........showing me the way,when awake,on how to follow the signs
Slumber turns to honey dripping,sweet nector in my mind,Windchimes take me to that place..,The one only we together can find
I find myself dancing like the windchimes in the trees...,I'm there in my sweet place,No money do I need,and.......I can go whenever I please,I need only a little breeze
And I please oh so very much,then do I dance and do I sing...like the breeze softly blowing me as if I were a feather of a wing
Oh Slumber forever hold me close and never do decieve......For the whispers I hear in your arms,I shall forever believe
Let me dance forever like the chimes blown in the trees....Foreverto sway magically 'neath the silvery bright moonbeams
For eyes open in the sun,now the sweetness leaves no taste..open eyes in the sun,see prescious lives in waste
Eyes looking out my window quicklyat dawns light,see the world rushing hastely without even giving a fight
So when the suns in the sky,I'll watch tv,let my brain fry,or like the young committ suicide,watch the news on the latest genocide,think of my piece of pie
Either way,during the day,I'm just along for the ride,sister chaos doesn't hide nor her brother all our foolish pride......................I almost scream,pull my hair,wrench at all my clothes,then I see 5 on the clock,yes the shadow knows,that every minute from now on the darkness quickly grows
Then again my ears do hear that loving beautiful sound the wind like the merry-go-round,soon to be there in the dark my new world I have found
Once again,I'll begin all of my dreams,of dancing chimes,soft blowing winds and magical bright moonbeams,how more real this world to me,than the sunlit one seems
Surrendering to this slumber every night,is where my soul wishes to go,where all is well,no pain no war,in that secret place,the wind,the chimes,the trees and we who know darkness best only know
I Remain 2bonnie,in darkness is peace,hope,healing,togetherness,love but most wonderous of all...life,yeah tho' I live in darkness do I clearly see...the joy,the joy of again finding ME
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Dr Trevor Marshall
Research Team
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Posted: Thu Jan 5th, 2006 09:58 |
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Bonnie,
Sorry about the fall.
You can buy chocolate with sugar alcohol, rather than sugar, as a sweetener. IMO they still put far too much sweetener into it, however. And it still carries calories, even if they don't affect your insulin as much.
The chocolate which has least sugar in it seems to be Cadbury's Dairy Milk, which has 22 calories per square piece. It is sugar, and fat, of course, but maybe you can suck one or two small pieces to give your morale a boost every now and then I suggest you let those 22 or 44 calories melt in your mouth - they seem to last longer that way
ps: Albertsons sells it
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Bonnie2
Member in Phase 2
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Posted: Sat Jan 7th, 2006 07:59 |
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| thanx on the heads up trevor about cadburys,actually cadburys w/almonds and I have been aquainted for quite a times,ok years.I just can't lie to people,these posts must be riggedanyway bed was my thing today actually am heading back in a few minutes.After research on the exposure of light through the eyes I have concluded that I might not wear my noirs as much as I should,yes the fall was bad but am experiencing numdness in other places.I must take control again of this distructive nature,I find that after being good foer 2months means I can get away with being bad for 2wks.I'll learn,I hate being sick yet instead of being patient I backslide,I'm 43yrs old and I feel as tho' I need adult supervision,what the h-ll.I tell myself it was the holidays,fine,I have put myself on notice,either I do this all the way,no steps back,or I just die,It is my deciscion,I want to live,but dealing with feeling alive is overwhelming,now I have numbness,and the funky b.o. again,that alone will make ya lonelywew,when soap and the stuff thats supposed to cut thru skunk don't help......ok.will spend tommorrow in bed to,trying to stay in total darkness,well I hear my chimes calling and I have a date with a hot drow elf named drizzt(R.A.Salvatore-wizards of the coast publications)2bonnie out
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Wed Jan 25th, 2006 08:54 |
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| I'm not dead really,just stuff goin on,lost another friend and like aussie barb says deeeeep pression set in,but am coming out of it,slowly but surely,wow never felt it so hard before,I just feel like time is my greatest commodity,and I don't even wear a watch,cuz my belief system rationally tells me that the only time is NOW anyway am on same schedule,only am doin the every other day on the mino more and more,slow.........steady,think I might be goin thru menopause,I don't mind that,just dont want to get all better to old and get menostopyeah,I'm here,chillin,It feels good knowing so many pm's read me and was feelin a little guilty 'bout shuttin down,had to actually dust this laptop off before I could use it.............................................2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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