I am new here

[Guest guest]

dinkybopmomma wrote:

<snipped for length>

> I get so worried that M will be with us forever. Our other kids are

> all about to have their next birthday within the next couple of

> months. They are 11, 13, 15 and 17. We are ready to start opening

> the the door to thier freedom and eventually ours. But now with M,

> I wonder if we ever will get to experience an empty nest. We had so

> many dreams of just the two of us...

It's amazing how much our kids change over the years. When Louie was

first diagnosed at 2.5, we were told the best thing we could do was to

institutionalize him, visit him once a month, and try and get on with

our lives. We were told that he would likely never talk or be able to

be with anyone other than family, that he would likely never hold a job.

So now here's Louie at 24: he's been in assisted living for 3 years and

just moved to a less-restrictive house, he is his own guardian and makes

his own decisions, he talks to anyone willing to listen (unless he's

concentrating on something else), he has a paying job as Assistant

Sexton at our church and they're thinking of adding another day for him

next year because they're so impressed with his work (he works 2 days a

week now), he has 2 volunteer jobs...one filling the wild bird feeders

at a local wildlife/nature center (he's had this one 2.5 years), another

visiting an elderly lady at a local nursing home, he joined the church

by his own decision (didn't ask us our opinion), he tithes from his own

money which he also manages, he has a savings account as well as a

checking account, and he's working toward having his own apartment with

only part-time aides to come in daily to make sure he bathes and takes

his meds and to cook for him. As you can see, he's turned out much

differently than the drs. told us he would. And that's the thing. We

can no more tell what our auties are gonna do than we can tell what our

NT kids are gonna do. In either case, it's all in how you raise 'em and

in the opinion of themselves you help to instill. Any kid, told daily

that they can do anything they apply themselves to, will succeed...IMHO.

We despaired that Louie would ever moved out too, because of how he was

when he was younger and what we'd been told to expect as he matured.

But move out he did, and he's happy as a clam about it. He visits us

for Sunday dinner, and comes to church with us most Saturdays, but we

just don't see him the rest of the week....his choice. :0

Don't give up. He'll do well, just watch.

Annie, who loves ya annie@...

--

The only nice thing about being imperfect is the joy it brings to

others. -- Doug Larson

[Guest guest]

,

She is 6 ( it was Kindergarten, not 1st grade that i

had her evaluated...my bad) and she is NOW in 1st

grade in a class with 5 other kids. She has a

wonderful teacher whose passion is AS and PDDNOS kids.

Hopefully Cheyenne(my daughter) will be able to be

mainstreamed 3rd grade. I forgot to mention that I

also have a 12yo son with AS who was diagnosed late

and has always been mainstreamed and is functioning

VERY well.

I'm glad to help

Monte

--- dinkybopmomma <dinkybopmomma@...> wrote:

.....How old is your child now? Will she ever be

main streamed? I have a friend who's daughter was

just diagnosed

last year. She is almost 15. It has been very hard

on them. She

has a laundry list of disorders along with the AS.

>.....

__________________________________________________

[Guest guest]

Hey Lily,

How wonderful to meet someone here that is so close to me, I am from

North Dakota. We can chat up the cold, snowy weather sometime if

you want. One good thing is you have the Twin Cities Spine Center

close to you as well as some good doctors in Chicago that are not to

far away either. I am more familiar with the Twin Cities Spine

Center as that is where I had my revision surgery done and then they

removed the hardware in November.

I have the cervical issues as well. Right now I am trying some

exercises my local doctor gave me to try and help with some of the

symptoms. Until my lower spine gets stronger my surgeon doesn't

want to do anything in the cervical area.

If you want to chat offline, just drop me an e-mail.

>

>

> Hello everyone,

> I'm am new to all this

> I had a spinal fusion with two harrington rods in 1972, when I was

fifteen.

> Generally I have done well since the surgery, excepet that I have

severe disc

> degerneration in my nexk, right above where the top rod is. C5-6

and C6-7

> are affected terribly. I am angry that no one ever told me to

watch out for this

> or for any future problems after my surgery. It also have a

negative impact on

> my overall development--delaying it mostly. I have awful memories

of my

> treatment and hospitalizations during my adolescence. Before my

surgery, I

> wore a Milwaukee brace for about 2-1/2 years and was in a body

cast for 9

> months after the surgery. I am glad this group is around!

>

> Lily/Minnesota

[Guest guest]

The following was written by Stan: How to get started A simple strategy is to first decision about your antifungal strategy. Personally I believe the safest, simplest and most effective agents for this is using oral Diflucan, or Nizoral (and I sometimes mention amphotericin . They are very effective and they have a proven track record of safety to not be relatively

non-toxic. Others opt to try naturals and some have success with products like Candex, or Caprilic Acid, Biotin, Grape Seed Extract (GSE) and a growing list of things that I will put in my introduction letter I will hopefully finish this weekend. Personally, if I was just getting started today, based on my personal philosophy of going what is most effective and not caring what the administration was, meaning I don't mind using a medicine as long as it's one that is science based, safe, proven, non-toxic, and effective, then I would start with either Diflucan or Nizoral

(or my third choice Amphotericin . Additionally, there is recent research that shows that these medicines are helping a large set of our kids who have testosterone issues, and I won't get into the details in this post, but normalizing testosterone seems to be a major factor in lowering bacteria levels, raising glutathione levels and this activity may be a very important element of a good portion of our children's recovery. So bascially, IMO, you are safely covering two bases with one therapy. If you are one of those folks who wants to go all natural, and don't mind the risk that some of

the naturals may not work as well for your child, then exploring the list of naturals may make sense to you. I feel we will come up with a list of naturals to use and figure out what works best for what child, but right now it's a bit of a trial and error scenario, but an important one because if we can figure it out it will save a lot of people money and headaches in dealing with doctors... Rx's etc. But, again... today if I was just getting started I would go with Diflucan or Nizoral. Next is the antiviral agent. After a lot of thinking... today I believe the place to start if you can afford it or have insurance is Valtrex. While we have seen gains with natural agents, we do not have more than handful of possible recoveries from them yet. Yes, we have a growing list of improvements, but comparatively I have 50 pages of children who have greatly improved or recovered from the use of

Valtex. My son being one of them. He continually improved on Valtrex and was off the spectrum in a matter of months. He was on Valtrex for a total of 9 months and has been free of any biomedical therapies for more than year now. And this was a metals toxic child with physical and behavioral impairments, so he not only recovered virally but he also detoxed and cleared his gut issues in a more natural way, through antiviral therapy. In the last few months we've confirmed that there is a metals dumping effect with Valtrex for at least some people, my son was one, we have test results of before and after on others. We also know that Valtrex modulated adenosine. Many of our kids have high or low adenosine levels and prior to Dr. Sid Baker publishing his study results about acyclovir and adenosine, we didn't have another therapy for this. Valtrex quickly converts into acyclovir, but the added values of Valtrex is that it is less toxic, more bioavailable and it crosses the blood brain barrier, which is where our kids often have inflammation, (according to the 's Hopkins study that came out last year and also mentioned recently in Time Magazine). Both Valtrex and the Naturals often result in what we call a healing-regression, which is a period of time when the child is healing but looks like they are regressing. It is similar to a die off effect, but at the same time we believe there is metals detox going on as well as immune system and metabolic restoration from the methylation changes and the lessening of the viral load. There also seems to be an increase in fungus during antiviral therapy and initially there is probably a kill off of this new fungus. The process is often greatly lessened by having the antifungal in place prior to starting the antiviral. This healing-regression typically lasts 20 to 40 days. Some folks also report never see a regression and only see gains... A SMALLER MINORITY of folks experience the regression for more than 40 days and folks in that situation often go to a lower dosage, take a break and return later, or possibly the best option move to another agent like

Famvir or Acyclovir which seem to work more slowly and then try Valtrex again after a period of time. We've seen some nice posts from parents who worked through really difficult cases with this strategy and I applaud them. What you don't want to IMO, is try an agent like Famvir or Acyclovir first, because you may trigger the virus to mutate or build a bit of resistance (this is just my observation). Lastly, some of these folks who have had a healing regression longer than 40 days

might move off of Valtrex at that point, switch to an Natural like OLE or Virastop for while and then move back to Valtrex (or try both) if their child doesn't have a full recovery with the Natural (which I have not seen a report of a recovery from a natural yet... although we've seen nice improvements). After the healing-regression and the typical gains we see thereafter, if you see consistent gains that look like you are recovery bound, like in the case of my son, I would not change anything. If you see gains and then a plateau, I would consider ADDING a natural like OLE.

Then if you continue to see gains I would not change anything or I might try adding Virastop and seeing what happens. One you have this part of your viral strategy under control, the next step would be to consider therapies that flush out Measles virus, which include a two day High Dose Vitamin A trial, and then Lauricidin. The group (and hopefully your good DAN! doc) will

help you with the nuances of each strategy, but I think this is a good framework to start with. I'm not a doctor. I'm not a PhD., but I do have the unique perspective of having the position of reading the thousands of posts and hundreds of trials from this group, and also of having a recovered child. Thank you for your question. It helped me clear up some of my thinking and I'll use some of this post in my framework for a "How to get started" document. Welcome, good luck, and keep us posted on your progress and questions. All the best, - Stan djgsmom <djgsmom@...> wrote: I just learned about the MB12 nasal spray and Valtrex last night. Although we are currently seeing a DAN! doctor, I guess I am unclear about how to start this process - do I go to her or are there other doctors who are following this protcol? I really believe my 4 1/2 year old son will benefit from both (he has shown some positive reaction to MB12 shots). I am really encouraged by the things I am reading - despite the negative reactions. I apprecite any help and advice. Thanks __________________________________________________

[Guest guest]

The following was written by Stan: How to get started A simple strategy is to first decision about your antifungal strategy. Personally I believe the safest, simplest and most effective agents for this is using oral Diflucan, or Nizoral (and I sometimes mention amphotericin . They are very effective and they have a proven track record of safety to not be relatively

non-toxic. Others opt to try naturals and some have success with products like Candex, or Caprilic Acid, Biotin, Grape Seed Extract (GSE) and a growing list of things that I will put in my introduction letter I will hopefully finish this weekend. Personally, if I was just getting started today, based on my personal philosophy of going what is most effective and not caring what the administration was, meaning I don't mind using a medicine as long as it's one that is science based, safe, proven, non-toxic, and effective, then I would start with either Diflucan or Nizoral

(or my third choice Amphotericin . Additionally, there is recent research that shows that these medicines are helping a large set of our kids who have testosterone issues, and I won't get into the details in this post, but normalizing testosterone seems to be a major factor in lowering bacteria levels, raising glutathione levels and this activity may be a very important element of a good portion of our children's recovery. So bascially, IMO, you are safely covering two bases with one therapy. If you are one of those folks who wants to go all natural, and don't mind the risk that some of

the naturals may not work as well for your child, then exploring the list of naturals may make sense to you. I feel we will come up with a list of naturals to use and figure out what works best for what child, but right now it's a bit of a trial and error scenario, but an important one because if we can figure it out it will save a lot of people money and headaches in dealing with doctors... Rx's etc. But, again... today if I was just getting started I would go with Diflucan or Nizoral. Next is the antiviral agent. After a lot of thinking... today I believe the place to start if you can afford it or have insurance is Valtrex. While we have seen gains with natural agents, we do not have more than handful of possible recoveries from them yet. Yes, we have a growing list of improvements, but comparatively I have 50 pages of children who have greatly improved or recovered from the use of

Valtex. My son being one of them. He continually improved on Valtrex and was off the spectrum in a matter of months. He was on Valtrex for a total of 9 months and has been free of any biomedical therapies for more than year now. And this was a metals toxic child with physical and behavioral impairments, so he not only recovered virally but he also detoxed and cleared his gut issues in a more natural way, through antiviral therapy. In the last few months we've confirmed that there is a metals dumping effect with Valtrex for at least some people, my son was one, we have test results of before and after on others. We also know that Valtrex modulated adenosine. Many of our kids have high or low adenosine levels and prior to Dr. Sid Baker publishing his study results about acyclovir and adenosine, we didn't have another therapy for this. Valtrex quickly converts into acyclovir, but the added values of Valtrex is that it is less toxic, more bioavailable and it crosses the blood brain barrier, which is where our kids often have inflammation, (according to the 's Hopkins study that came out last year and also mentioned recently in Time Magazine). Both Valtrex and the Naturals often result in what we call a healing-regression, which is a period of time when the child is healing but looks like they are regressing. It is similar to a die off effect, but at the same time we believe there is metals detox going on as well as immune system and metabolic restoration from the methylation changes and the lessening of the viral load. There also seems to be an increase in fungus during antiviral therapy and initially there is probably a kill off of this new fungus. The process is often greatly lessened by having the antifungal in place prior to starting the antiviral. This healing-regression typically lasts 20 to 40 days. Some folks also report never see a regression and only see gains... A SMALLER MINORITY of folks experience the regression for more than 40 days and folks in that situation often go to a lower dosage, take a break and return later, or possibly the best option move to another agent like

Famvir or Acyclovir which seem to work more slowly and then try Valtrex again after a period of time. We've seen some nice posts from parents who worked through really difficult cases with this strategy and I applaud them. What you don't want to IMO, is try an agent like Famvir or Acyclovir first, because you may trigger the virus to mutate or build a bit of resistance (this is just my observation). Lastly, some of these folks who have had a healing regression longer than 40 days

might move off of Valtrex at that point, switch to an Natural like OLE or Virastop for while and then move back to Valtrex (or try both) if their child doesn't have a full recovery with the Natural (which I have not seen a report of a recovery from a natural yet... although we've seen nice improvements). After the healing-regression and the typical gains we see thereafter, if you see consistent gains that look like you are recovery bound, like in the case of my son, I would not change anything. If you see gains and then a plateau, I would consider ADDING a natural like OLE.

Then if you continue to see gains I would not change anything or I might try adding Virastop and seeing what happens. One you have this part of your viral strategy under control, the next step would be to consider therapies that flush out Measles virus, which include a two day High Dose Vitamin A trial, and then Lauricidin. The group (and hopefully your good DAN! doc) will

help you with the nuances of each strategy, but I think this is a good framework to start with. I'm not a doctor. I'm not a PhD., but I do have the unique perspective of having the position of reading the thousands of posts and hundreds of trials from this group, and also of having a recovered child. Thank you for your question. It helped me clear up some of my thinking and I'll use some of this post in my framework for a "How to get started" document. Welcome, good luck, and keep us posted on your progress and questions. All the best, - Stan djgsmom <djgsmom@...> wrote: I just learned about the MB12 nasal spray and Valtrex last night. Although we are currently seeing a DAN! doctor, I guess I am unclear about how to start this process - do I go to her or are there other doctors who are following this protcol? I really believe my 4 1/2 year old son will benefit from both (he has shown some positive reaction to MB12 shots). I am really encouraged by the things I am reading - despite the negative reactions. I apprecite any help and advice. Thanks __________________________________________________

[Guest guest]

Hello,

I was actually banded on the very same day (by Dr. Ortiz)!!! Welcome!! You

found the right place. This is definitely the most friendly and informative

group I belong to.

Welcome again,

>From: " fmp0123 " <fmp0123@...>

>Reply-

>

>Subject: I AM NEW HERE

>Date: Tue, 27 Jun 2006 19:33:04 -0000

>

>HELLO I WAS BANDED 10/21/2005 I AM LOOKING FOR A PLACE TO FIND FELLOW

>BANDSTERS AND FRIENDLY SUPPORT AND CHAT.

>

>

>

>

>

>

[Guest guest]

WElcome! There are many different band groups where you can find the

support and guidance you need. We're glad you're here! But choose one

or two others, too, since no group can be all things to all people.

We don't do chats here, since it's a relatively small group, but many

of the larger groups do, like Bandsters and SmartBandsters.

I prefer, speaking only for myself, to answer questions in this forum

rather than in chats, so anyone else reading can also learn. We can

all be sure that any question we have is shared by many others in our

band community.

Glad you're here!

sandy R.

Kuri, at goal

www.BandsterME.com - Guided Imagery for band success

>

> HELLO I WAS BANDED 10/21/2005 I AM LOOKING FOR A PLACE TO FIND

FELLOW

> BANDSTERS AND FRIENDLY SUPPORT AND CHAT.

>

[Guest guest]

Hi Marley welcome to the group. I'm in a few of he other groups you are

involved with as well. Hope you enjoy the group. Everyone is very

friendly here.

[Guest guest]

Welcome Marely,

This is a great group, and I know you will love it. I have fibromyalgia and asthma etc. I might have diabetes too as they are sending me for diabetes education. I am going to have sinus surgery Monday. We have some with MS as well.

love,

[Guest guest]

hello and welcome to the group. there are tons of great people here. it sounds like you have a really positive outlook. that is great. hope to hear more from you soon. evelyn"*Marely==>Sweetness*" <a_lil_bitter@...> wrote: Hi Everyone, I am Marely new to the group and wanted

to introduce myself. I am 39 years old, I live in West Virginia just moved here From Florida. I have MS since 94 and have been in a wheelchair since 98. I also have diabetes that is always out of control. My life is really tuff at times but this only makes me stronger. Chin-up and its stay positive at all times! Marely http://www.myspace.com/a_lil_bitter http://360./profile-wyydqJgwRKptNdnAbPNf1UmOi2E-?cq=1 All-new - Fire up a more powerful email and get things done faster.

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

>

> Hi...my doc put me on Lexapro..first dose today. Not sure what to

> expect..I feel " funny " in the head and i have cotton mouth bad! Just

> wanted to say Hi and let you know that I am here.

>

Hi ,

I didn't have any miraculous change over night but I haven't had to go

to the hospital this year, and dont' spend many days wailing and

crying like I was. I don't know why you feel funny in the head or have

cotton mouth. Maybe its the meds. but I didn't have any strange

feelings with lexapro, I am on 20 mg at present, and dont' notice any

side effects.

Good luck.

[Guest guest]

Hey Lori why not ask the dr to do a body fat reading. If your clothes are getting smaller maybe you are turning fat into muscle and that would show on a body fat reading. Where are you moving back to the states? AND what brought you to FRANCE? Remember water, portions, and exercise are key to any plan.

N.H.It's Tax Time! Get tips, forms and advice on AOL Money Finance.

[Guest guest]

Hi Lori, it is nice to meet you. I am . I live in Oklahoma and I am married and a sahm to Madison 15 and 8. I need to lose 107 pounds. I want to weigh 170 and that . I am 39 and have been fighting a weight problem for about 10 years now. I have several health problems that would be reversed if I lose the weight. Post often. you will find lots of encouragement and support on this board. L R <okey98277@...> wrote: Hi, my name is Lori and I am an expat currently in

France but getting ready to move back to the states by the end of the year. I am 45 and need to lose 100 pounds. I want to be like I was when I was in my 20s, at 120 pounds. Currently I am at 220. I had my gall bladder removed a couple of years ago and have been having a hard time losing since then. A few weeks ago, I was hospitalized because a stone was left in me from my surgery and it was blocking me up. I had that removed and was ordered on a strict no fat diet. I have been doing relatively well and only eating nominal amounts of fat. I need encouragement badly. I want to make over my whole self. I have also been doing weight bearing excersizes and finding that although I am shrinking, my weight is going up and that is discouraging to me. This makes me depressed. I go to the doctor and they weigh me and they cannot see any progress, only that the scale reads what it does, they dont know that I am actually in a smaller clothing size and so I get the

"you need to go on a diet" talk. I would love to meet others on here and make friends. Thanks, Lori

[Guest guest]

Lori---see replies below >>>>>>>

>>>I am 45 and need to lose 100 pounds.>>>

I am 46 and need to lose about 120. I can relate!!

>>>>I want to be like I was when I was in my 20s, at 120 pounds. >>>

Me, also!! That's my ultimate goal although I know I may have to

settle for 140.

>>>Currently I am at 220. I had my gall bladder removed a couple of

years ago and have been having a hard time losing since then. A few

weeks ago, I was hospitalized because a stone was left in me from my

surgery and it was blocking me up. I had that removed and was ordered

on a strict no fat diet. I have been doing relatively well and only

eating nominal amounts of fat. I need encouragement badly. I want to

make over my whole self.>>>

Congrats on doing so well so far!! That's great news. I also want to

make over my whole self. Some people have discouraged me and told me I

am being too " dramatical " but I disagree.

I have been single all my life and never had a committed relationship

(I am straight; have dated often when I was younger and " in shape').

>>>I have also been doing weight bearing excersizes and finding that

although I am shrinking, my weight is going up and that is

discouraging to me. This makes me depressed.>>>

AMEN TO THAT!!! I know a few people may disagree with me on this but

please understand that I am a former personal trainer and I do have a

lot of research backed up on what I am about to say. I cannot tell you

how discouraged I was when I was gaining weight (pounds) from working

out when I was already overweight. My doctor actually told me to stop

lifting weights and to just diet and walk until I got below 180.

People over 200 pounds...in fact...women over about 165 (165 seems to

be the " magic number) and who are between 5' 4 and 5' 7 (average

height) seem to do better if they are on a program of their own

body-weight bearing workouts (not traditional weight workouts). The

name for a program that is excellent is called " Freestyle. "

>>>I go to the doctor and they weigh me and they cannot see any

progress, only that the scale reads what it does, they dont know that

I am actually in a smaller clothing size and so I get the " you need to

go on a diet " talk. >>>

I went through all that when I was an athlete also.

Thanks for posting :-)

-L

[Guest guest]

Welcome to the group Lori!I am sure you will find alot of support here. I'm a, married mom to 3 girls ages 7,10, 12. I live in Michigan and work at the local store. a

between 0000-00-00 and 9999-99-99

[Guest guest]

I have to second this advice.. weight lifting may initially cause gain in muscle, but it was a huge factor in my weight loss. Luv,Debby in San , CA147 pounds lost! 100% of health issues reversed!Group: curingcandida/Website: http://www.naturallythriving.comCurrently studying for Nutrition license and PhD in Psychology----- Original Message ----From: liawa1 AMEN TO THAT!!! I know a few people

may disagree with me on this butplease understand that I am a former personal trainer and I do have alot of research backed up on what I am about to say. I cannot tell youhow discouraged I was when I was gaining weight (pounds) from workingout when I was already overweight. My doctor actually told me to stoplifting weights and to just diet and walk until I got below 180.

[Guest guest]

---Hi , Im Valarie, mom to four kids, three with CVID. Welcome to

the group!

valarie

In , " stacy " <Gee223@...> wrote:

>

> I am not sure if my post was posted? MMM??? Maybe I am doing something

> wrong?

>

[Guest guest]

---Hi , Im Valarie, mom to four kids, three with CVID. Welcome to

the group!

valarie

In , " stacy " <Gee223@...> wrote:

>

> I am not sure if my post was posted? MMM??? Maybe I am doing something

> wrong?

>

[Guest guest]

This is the first post I have seen from you, welcome!

I am new here

>I am not sure if my post was posted? MMM??? Maybe I am doing something

> wrong?

>

>

> ------------------------------------

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

[Guest guest]

I have had such good results that I have bought 5 units. And I don't

have much disposable income. It took me 8 months to acquire that many.

I have been down with chronic fatigue syndrome for 6 or so years. But

it was actually more than that. I found out I had Sjogrens syndrome.

It is where you bodies river dries up. It starts like chronic fatigue

syndrome and slight on set of arthritis that does not test positive.

My knuckles were red and swollen but the Doctor Fisher out of Houston

said that it was all in my head and that I was wasting his time. But

the people around me said that my hands were indeed red and swollen.

It hurt to turn a door knob. I slept all the time. And people thought

I was a hypochondriac. But 6 years later I have sjogren syndrome. So

now that I have been using the protocol I have energy. My leg is

working again. My brain is working again. I could not read my novels

any more because I could not remember them for the night before. But

that only lasted two weeks. With my own " research " with Bob Beck

Protocol I found many things clear up for me. I use it every day. I

tried to stop after 5 months and found that I still needed it. I find

it great because the only side effect is that my wrests where the

pulser goes is red and a bit rough. I switch wrests to alleviate that.

I am still doing my " research " . I will never give it up. I absolutely

swear by it.

K

>

> Hi everyone! I was looking for some sort of testimonials or people

> saying whether it worked for them or not but I can't find a good place

> to read negative or positive comments. Where should I start from?

>

[Guest guest]

, our group prays for one another and we don't tell off-color jokes.

Pam H

I am new here

I an 50? LPN who works in surgery dept.of a large hospital in Jax.,Fl. I got o great hospital where I work but my Dr. is not educated about fibromyalgia I gave him articles from various fibiromyalgia magazines and websites too. My Husband is Ret. I work weekends 12 hours from Friday and of on Monday. I am so busy in my spare time too and only one one medicine for my fiibromyalgia. I still garden, can and make my own jams too. I knit to relax. we both are very active in church so I like a site where we can also pray for one another.I don't like of color jokes so i will bypass those posts.But I look at the positive not negative. see the glass half full too. Yes they are day's I ache but that is my one weak link learning to listen to my body more and the warning signs a flare is approaching as getting very sensitive to s smells and sounds and those bright lights. I start IV's take them out go over medical history and discharge papers too. I love it. My mom is very very good friends with Heidi who use to belong here they have been friends since 1980.My Mom lives in Oklahoma and she and Heidi talk on the phone every week too. I know she use to belong here but quit and now everything is caught up with taxes insurance etc she is even looking into going back to college to become a surgical asst to give the medical tools to the Dr. she and my mom are planning a trip to DC in May. she has congressmen Wifes he knows up there and plans to stay with them. But she told my mom about this site like Heidi both our moms have fibromyalgia but Heidi's had fibroitis and my mom fibromyalgia. so it is genetic I am sure in some families I am sure of.What do you think????But I hope to meet some new Friends here to help me on my walk and help me to learn when my sensitivities to lights, sounds and smells come up is to relax.I feel guilty doing that.well I need to go get dinner ready tuna casserole then salad left overs for my dinner this weekend. Hope to be back by Thursday if not Friday A.M. For I work 12 to 12 on Friday Sat and Sunday. My sister owns a curves in MacClenny,Florida and my other sister owns one in Edmond Oklahoma where my mom lives. Tell Heidi I said,"Hi" I miss her great information too she knows so much too. I am praying I can move back to Oklahoma and be close to my mom .But we love it here. The hospitial I work at is Mayo ..Bye for now Crews-Botts LPN

[Guest guest]

,

This is a very nice group. There is always someone to listen, to understand, to help with information, to support, to make you smile and to be a friend.

Welcome.

Sue

From: Pam Horne <pmarshall@...>Subject: Re: I am new here Date: Thursday, March 5, 2009, 9:36 AM

, our group prays for one another and we don't tell off-color jokes.

Pam H

I am new here

I an 50? LPN who works in surgery dept.of a large hospital in Jax.,Fl. I got o great hospital where I work but my Dr. is not educated about fibromyalgia I gave him articles from various fibiromyalgia magazines and websites too. My Husband is Ret. I work weekends 12 hours from Friday and of on Monday. I am so busy in my spare time too and only one one medicine for my fiibromyalgia. I still garden, can and make my own jams too. I knit to relax. we both are very active in church so I like a site where we can also pray for one another.I don't like of color jokes so i will bypass those posts.But I look at the positive not negative. see the glass half full too. Yes they are day's I ache but that is my one weak link learning to listen to my body more and the warning signs a flare is approaching as getting very sensitive to s smells and sounds and those bright lights. I start IV's take them out go over medical history and discharge papers too. I love

it. My mom is very very good friends with Heidi who use to belong here they have been friends since 1980.My Mom lives in Oklahoma and she and Heidi talk on the phone every week too. I know she use to belong here but quit and now everything is caught up with taxes insurance etc she is even looking into going back to college to become a surgical asst to give the medical tools to the Dr. she and my mom are planning a trip to DC in May. she has congressmen Wifes he knows up there and plans to stay with them. But she told my mom about this site like Heidi both our moms have fibromyalgia but Heidi's had fibroitis and my mom fibromyalgia. so it is genetic I am sure in some families I am sure of.What do you think????But I hope to meet some new Friends here to help me on my walk and help me to learn when my sensitivities to lights, sounds and smells come up is to relax.I feel guilty doing that.well I need to go get dinner ready tuna casserole then salad

left overs for my dinner this weekend. Hope to be back by Thursday if not Friday A.M. For I work 12 to 12 on Friday Sat and Sunday. My sister owns a curves in MacClenny,Florida and my other sister owns one in Edmond Oklahoma where my mom lives. Tell Heidi I said,"Hi" I miss her great information too she knows so much too. I am praying I can move back to Oklahoma and be close to my mom .But we love it here. The hospitial I work at is Mayo ..Bye for now Crews-Botts LPN

[Guest guest]

Goldie, I had a total hip replacement just over 4 months ago........if you

hurt that much now, you

will never last two more years until you can use Medicare. I was in

excruciating pain before my

replacement and want to tell you that the pain after surgery is nothing like

that I had before. The

PT was not pleasant but not really painful. Pain relievers will help you

during your PT. Go for it

now before you start losing muscle quality which will make your PT harder.

BARB in Florida

I am New Here

I am new on here, I am told I need a hip replacement but we cant afford one

un till I reach 65 and get on Medicare I am 63 I have ins. now but we will

still owe a lot , I am really concerned about getting this done, I dont know

if I can handle it mentally, I hurt so much now dont know if I can handle

the pain of therapy after the replacement I dont know what to do.

------------------------------------

[Guest guest]

Goldie,

I agree with Barb.  I had to work from home for months cause I couldn't walk

very far from all the pain I was in.  The pain throws your gait off, so you

might feel your knees and back ache, too.  Finally, I had to retire it got so

bad.  Had my surgery and that miserable pain was gone! 

Please listen to Barb...the more damage done to the joint, the harder the

recovery, even with PT, will be.  And emotionally, it will positively drain you

and make you someone even you won't recognize.

Bless you, I know the decision isn't easy.

Lynn

LTHR Oct 09 

A bright spirit once said, in days of old, " Faith itself is the pot of gold. "  

Emma O'Reilly

Visit my art blog:  http://adreamseyeview.blogspot.com/

From: BARB <barbmch@...>

Subject: Re: I am New Here

Joint Replacement

Date: Friday, March 18, 2011, 7:55 PM

Goldie, I had a total hip replacement just over 4 months ago........if you

hurt that much now, you

will never last two more years until you can use Medicare.  I was in

excruciating pain before my

replacement and want to tell you that the pain after surgery is nothing like

that I had before.  The

PT was not pleasant but not really painful.  Pain relievers will help you

during your PT.  Go for it

now before you start losing muscle quality which will make your PT harder.

BARB in Florida

I am New Here

I am new on here, I am told I need a hip replacement but we cant afford one

un till I reach 65 and get on Medicare I am 63 I have ins. now but we will

still owe a lot , I am really concerned about getting this done, I dont know

if I can handle it mentally, I hurt so much now dont know if I can handle

the pain of therapy after the replacement I dont know what to do.

------------------------------------

[Guest guest]

Goldie,

If you can live with the pain you have now, a replacement will be easy. I was

afraid too. I now have 2 new knees and wouldn't trade them. I started with

first surgery in Nov of 09. The second I had in March of 10. You will have

help all the way if you find a good Surgeon. Pain pills for PT and you will be

walking before you know it with new hips. No one could be more afraid than I

was. No Medical problems in a long long time and didn't want to even go into

the hospital.

I made it fine. So will you. It really doesn't make it better to put it off

but money is always an issue. If it isn't, go for it.

Donna R

I am New Here

I am new on here, I am told I need a hip replacement but we cant afford one un

till I reach 65 and get on Medicare I am 63 I have ins. now but we will still

owe a lot , I am really concerned about getting this done, I dont know if I can

handle it mentally, I hurt so much now dont know if I can handle the pain of

therapy after the replacement I dont know what to do.