Originally Posted by jpk
hello my name is jan and i am the mother of that little girl in nz.her name is jessica!i have got no idea how this letter i wrote got this big,but wow,i never knew this site existed boy am glad i do now.jess has been off school for 12 weeks and we are still waiting for some help from the hosp system for e.d,physio and meds,so we went behind thier backs to get some help,what a fight,long,hard and lonely!but we are fighters and we are still here and now we have a new support system "YOU",thank you from auckland new zealand
Well Hi Jan!
I'm so excited to read your post I'm nearly shaking! It was me who contacted the newspaper reporter who wrote the article about your daughter. I just had to find this reporter and tell her about this website and as well have her tell you and your daughter.
I posted this thread in hopes that you would find us easier and you did! I am SO happy you found us. Not only will we be able to offer support for Jessica but for you also. Like I said, when someone in the family has FM, the whole family has it, really.
I can't imagine how hard it is for a young girl just beginning her life to have FM. Why did you have to "go behind the hospital's back" to get help? Are they resisting helping out Jessica? Having FM is a fight for sure, first to get people who are "ney sayers" to believe that this condition is real. Second, to get the proper treatment. Especially for young folks, I think. Juvenile Primary Fibromyalgia Syndrome is growing and affecting more and more of our kids every day.
FM is hereditary. Normally coming from either the mother herself or from another female family member, but not in every case. Jessica may be the first in your family to have FM.
One "good" thing with our youth becoming more and more affected with this condition...they seem to be more determined than some of us "older folks" to get the word out about FM, and to want be part of finding a cure for this condition. The young people with FM are actually our hope for the future of this disease.
I am SO glad you found us here. We are a great bunch here and willing to offer any kind of help we can. We consider each other as "family". Fibromights are all related, no matter where we live.
May I suggest that you page through some of the older threads and do a little "research" on the ones that catch your eye? I'm going to bump up some of the ones that have been popular here, so you can take a look.
I realize that we have a big time difference between NZ and where most of us are here in the States, though we do have a lot of folks who post here from other countries, I believe you are probably the furthest away so far!
Did you find the tool on the site that will adjust the board time to your own time zone? I think it's found under "User CP" (CP=control panel), you can adjust the time so that when you post the time of the post will read appropriately for your own time zone. I think it will configure to your zone. I think you all are about 18 hours ahead of the east coast, am I correct? That way those of us here as well as yourself can figure out when you posted. I know that right now is your "tomorrow"!
So you'll hopefully find this post when you wake.
Is Jessica out of school because of her FM? Is she getting tutoring of any kind? Will the school there not accomadate her special needs? I post a lot on the Pain Management board as well as here on the FM board/forum, as do a couple other members who have FM. Pain and FM go hand in hand.
I'd be interested in learning about how your healthcare system works and if you have been provided any info about Fibromyalgia. I read in the article that Jessica mentioned that there are support groups for adults with FM, so I'm assuming that it is being treated. I'd be interested to know HOW they treat FM over where you are, as compared to our treatment here. We usually are prescribed anti-depressants when we are first diagnosed with FM. Though we may not be depressed, something about the anti-D's that helps our serotonin, blah blah blah. I'll bring up some posts about that issue also. Some of us have a problem with those kind of meds. I think, IMO that is our biggest form of meds that we Fibromights have the most problems with.
You will find a lot of opinions here, and please find comfort by posting your own opinions, feelings, emotions, joy, frustrations, accomplishments, etc. We share a lot here. No one person is any "better" than the other. Each of us who post here have our own "gifts" to offer. No "chain of command" here. LOL Except, of course for the Moderators!
( Hi Mods! ) We respect each other as well as each other's opinions, tho they may be different from our own, we accept that with grace. Sometimes, we may disagree, but that's how we learn.
Okay, well, I'm glad you found us! I guess it was meant to be when I recieved my newsletter with the article about Jessica in it! I did send inform the reporter as to how I rec'd that article. She was suprised that the article drew a response from so far away.
I was not the only one who read that article. The Fibromyalgia "community" around the world is tight and close knit when you look at it in the broad sense, really. It absoulutely humbles me and I feel honored to be part of such a wonderful caring "community". Not honored to have FM! But certainly, I have met some of the most compassionate people in the FM community. This Healthboard is the foundation of most of that compassion and a true life line for me.
As you can see, many folks here are anxious to meet you and your daughter.
I'm going to post a new thread to tell everyone about your reply to this thread.
So nice to meet you and I'm glad you are here. We would love to hear from Jessica also if she wants to post with her own ID. We love our "girls" here!
We all range in age, from 16 (I think) up to 74!
You found a great home here!
Here's wishing you a good spirit,