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Old 05-28-2005, 01:21 PM   #1
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Talking Hello Again..Been Awhile. Awareness Day Succes

Hey everyone! It's been a long time since I've been on. I've been busy with my hat day to raise awareness at my high school about FM. Because the high school wouldn't allow anyhing too big, I did a hat day. The school dress code doesn't allow us to wear hats, but if someone wants to raise money for a no-profit organization, you can let kids wear their hat for some money. So, for $1, anyone, inclusing teachers, could wear their hats all day.

Three of my friends helped me make a ton of posters(well, a ton to us) about FM and the hat day. We made about 20 posters with just the four of us. During advisory, where our teacher reads the annoucements, I had an annoucement about the hat day and a little information about Fm for nayone who didn't have time to read hte posters. They ran for about two weeks. On May 12, we had an announcement read over the intercome stating it was the National Fibromyalgia Awareness Day and how everyone in the shcool could help us take one more step towards finding a cure. It felt good to have that read.

We could only dp the hat day on a Friday, so we did it the following day, the 13. I know, Friday the 13th, unlucky right? WRONG! I had four of my friends helping me at my table. We gave each kid a purple butterfly stamp on their hand to show they had paid for their hat. We had three teachers wear hats and two jsut donate money. Some of the hats were crazy. But the best part was how much we raised. We raised $98.35. Pretty good for my first tme doing this.

Another cool part was I met someone face to face who also had Fm. We talked for almost half an hour. She was so happy I was doing something to help raise awareness about FM. It felt good to know someone appreciated i. And it also felt good to tell everyone at my school about FM and have them actually listen to me. My mortal enemy was actually listening to me without any sarcastic remarks for once!

I can't wait to do this again next year. But I might do a dance instead. How does the Butterfly Ball sound?

So how has everyone been since th elast time I was on? tkgoodspirit! Where are you tk? How have you been my friend?

Flying Out Now!
*~FireflyGurlAsh~*

 
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Old 05-28-2005, 02:39 PM   #2
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Re: Hello Again..Been Awhile. Awareness Day Succes

That is really cool. Brought tears to my eyes. And you can't wait to do again next year. Wow.

Thank you for raising awareness of fibromyalgia. I wish I could give you a big hug.

Donna

 
Old 05-28-2005, 02:47 PM   #3
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Re: Hello Again..Been Awhile. Awareness Day Succes

Would you mind terribly if I stole ideas from you? I've been doing some stuff too, but I want to do more!!

Thanks for helping us out!! Your awesome!
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Nummular Eczema
Depression
Esophagitis
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Old 05-28-2005, 02:57 PM   #4
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Re: Hello Again..Been Awhile. Awareness Day Succes

Well THERE you are my girl! LOL

I gotta tell you, I was thinking of you the other day when I was replying to a post from another teen here on the board with FM. I was remembering you when you first asked about Juvenile Fibro. I reposted that info just recently for Julie, our other young friend with FM.

I hope she sees your post and replies. She's a sweetie. It would be great for you two to share stories about being a teenager with FM. She too had done something at her school for FM Awareness Day. Thank goodness for you guys, us old folks need you to spread the word! LOL

I HAVE been thinking of you dear, and when I saw your post I was thrilled! I am so humbled that you remembered me. You have no idea how much that means to me.

You sound like you are doing great. You feeling okay? How's your pain? School over yet for you? Remind me again, what grade you are in? What kind of plans do you have for summer, or are in a school that goes all year? Lots of questions eh? LOL Well, I'm kind of a nosey broad! I'd say "chick" but once you past 40, you become a "broad"!

I have a lot going on, personally. More tests than I can count on one hand, seems like. I have an MRI of my brain scheduled, checking for MS. And a new one on my lower back. Seems that a Neurologists thinks the nerve damage is too severe to operate on my back, it's too late, it won't help me. I have lost a lot of use in my right leg. You should see me dress myself, pretty comical! I also have an EMG scheduled to check the nerve damage in my right leg and where it's coming from. I told them I can draw them a picture where it's coming from! LOL I have an Ultrasound scheduled to look at my heart, I guess it's sounding a little "weak", another Ultrasound for my Thyroid. I had a bone scan done that showed some abnormalties in my bones that's caused by a malfunction of the Thyroid. ????? Got me?

The MRI of my brain will probably show cartoon characters dancing around in my head! And the bone scan was kinda cool. You just lay on this slab, it's too hard to call a table! And the camera rotates around you and takes pictures of your skelaton! When the camera was under me I could see my skelaton on the monitor. It looked pretty funny. It looked like one of those Halloween door decorations you put up! LOL All I kept thinking was "Geez, I have big bones!"

My FM pain is a bit high right now. I need my pain meds adjusted. I was put on a new long acting med in February and we're still in the "tweaking" stage. I see my doc this Tuesday, so hopefully we'll get a good dosage going here and I'll feel better. It's frustrating tho, I need to clip my roses, poor things, they look pitiful. So does my house! I hope no one comes to visit, if I could only teach my dogs how to vacuum and dust.

I was doing a little Physical Therapy. I had trigger point release massage therapy for about a month on my upper back and neck. It worked great. If you get those inflamed trigger points and your upper back hurts bad, ask your doc to write you a script for Trigger Point Massage therapy. Trick is, you have to find a Physical Therapy facility who has someone who specializes in working with their "hands". The place I went, has a guy who runs the place and his specialty is Sports Medicine so he's trained to use his hands as therapy. They had all the exercise equipment of course, and he's trained in other kinds of therapy, but he specializes in massage therapy. Most PT facilities do have a massage therapist on site, but you have to be careful because some of them just work on you once or twice then put on a a peice of equipment. Then you're like "hey, where's the good stuff?" Anyway, rambling on there! Sorry. If you ever have trouble with pain in your upper back, shoulders and neck check into trigger point release massage.

Are you able to get any exercise in? Do you all still have Gym class in highschool? Can you participate? It's important you try to stay active, especially cuz you are so young. Being your age, you can stay active, you won't suffer so much when you get older.

Well, darlin' that's about it for me. I'm so happy to hear from you and so thrilled you remembered me. And, yes I DO think the "Butterfly Ball" sounds great! You know the official color of FM is purple? Our pins are purple. Just like the breast cancer pins, only ours is purple.

I hope that our other teen Fibromight replies so you can meet each other. Her username is "Godsgirl4ever", and she has a lot of threads and posts here on the FM board. She's like you, has a lot of "spunk". Check 'em out. We are lucky to have both of you as part of our "family".

Well, gotta run, my DSL modem is dying a slow death, I have to keep unplugging it to let it "rest". I'll call my ISP next week and get them to bring me another one, that I'm sure will only last 2 years, like this one. That seems to be their life span. Glad I'm not a DSL modem!

Love you honey,
tk
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Mahatma Gandhi

Last edited by tkgoodspirit; 05-28-2005 at 03:01 PM.

 
Old 05-28-2005, 03:20 PM   #5
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Re: Hello Again..Been Awhile. Awareness Day Succes

Quote:
Originally Posted by GodsGirl4ever06
Would you mind terribly if I stole ideas from you? I've been doing some stuff too, but I want to do more!!

Thanks for helping us out!! Your awesome!


LOL, Speak of the "dickensl"!

I was braggin' on you sweets! I guess we were posting at the same time.

I hope Ash see's your reply soon and you all can "chat". It was her I was trying to remember the other day when you and I were discussing Juvenile FM. I'm glad she popped up. I hope you two can help each other.

If I remember right, she originally posted looking for a specific site meant for teens with FM and we couldn't seem to find but only ONE. I think, if that. I know she wanted to speak with someone her own age about having FM, and when you popped into our site, I was hoping you and she could meet. And now my hope has come true! I'm happy.

I know, you can talk to us "old folks" (well, some aren't too old!) But I remember being 16 or 17 years old, even 22 was "old". I know it would be great for you two to be able to share with each other. We love you, I love you, but I'm glad you have the chance to talk with someone your own age. I know how important that is for both of you, as you all are in a minority group, for sure!

Well, I for one, will be happily and hopefully watching you both develop a friendship here, where only the two of you can truly understand how each other feels.

Love ya sweetness!
tk
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Mahatma Gandhi

Last edited by tkgoodspirit; 05-28-2005 at 03:21 PM.

 
Old 05-28-2005, 05:32 PM   #6
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Re: Hello Again..Been Awhile. Awareness Day Succes

Firefly you did a great job, I for one am very proud of you. You and Godsgirl are wonderful young people and we need you to 'tote our banner high'. Thank you for all you have done and will do in the future, I think I would love to go to a dance named the butterfly ball. Keep posting when you have the time we love to hear from you.

Glojer

 
Old 05-28-2005, 09:10 PM   #7
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Re: Hello Again..Been Awhile. Awareness Day Succes

well done little sister, well done!
peace,
bluelakelady

 
Old 05-29-2005, 06:36 AM   #8
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Re: Hello Again..Been Awhile. Awareness Day Succes

Hi Firefly! Nice to meet you. It's a wonderful thing you're doing. I agree that you youngers ones are key in furthering the cause. Even though you are presently ill, your youth will hopefully give you more strength and much more time to help work towards getting some answers than some of us older ones out here. Although it saddens me deeply that you are stricken with such a nasty illness at such a young age, you have an excellent chance of being cured, or at the very least, benefiting from the advances of medical research to keep your symptoms at bay. I truly feel that we are not that far away!

On another but similar note, I was wondering if you would mind sharing with me how and when you were diagnosed with FM and specifically which symptoms led to your diagnosis? Julie, it would be great to hear from you as well if you have time. The reason I ask is because I have a 17 year-old son who was an excellent student, and very healthy until about a year and a half ago. Since last September, his mental and physical health took a vicious turn for the worse. I already see several similarities between his downward slide and mine.

God bless you ... be well ... and keep up the good work ...

Love,

Robin

 
Old 05-29-2005, 11:35 AM   #9
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Re: Hello Again..Been Awhile. Awareness Day Succes

Quote:
Originally Posted by Lost Robin
Hi Firefly! Nice to meet you. It's a wonderful thing you're doing. I agree that you youngers ones are key in furthering the cause. Even though you are presently ill, your youth will hopefully give you more strength and much more time to help work towards getting some answers than some of us older ones out here. Although it saddens me deeply that you are stricken with such a nasty illness at such a young age, you have an excellent chance of being cured, or at the very least, benefiting from the advances of medical research to keep your symptoms at bay. I truly feel that we are not that far away!

On another but similar note, I was wondering if you would mind sharing with me how and when you were diagnosed with FM and specifically which symptoms led to your diagnosis? Julie, it would be great to hear from you as well if you have time. The reason I ask is because I have a 17 year-old son who was an excellent student, and very healthy until about a year and a half ago. Since last September, his mental and physical health took a vicious turn for the worse. I already see several similarities between his downward slide and mine.

God bless you ... be well ... and keep up the good work ...

Love,

Robin

Robin,

Have you had your son checked for FM yet? It is believed to be hereditary, mostly passed from mother to child, even if that child is a boy. Tho most women have FM, it is becoming more and more noticeable in men. I think, IMO, that more men have it actually, but it's attributed to other things, or it just is written off as fatigue. Plus you know how guys are about going to the doctor! So I think more men than we think have FM, they just don't go to the doctor.

Docs thought my son had it for awhile, turns out he has bone spurs in his lower back, but he was dx'd with "Myalgia". So, it's still up in the air as far as my son and FM, IMO.

I was just wondering if you have taken your son to the doc yet, get those tests run to rule out the "other" things. All those tests that we went through.

I hope he doesn't have FM for yours and his sake, but if he does, I know you'll be there to help him. Has he been checked for Mono? Mono has similar symptoms of FM, but when it's treated with anti-biotics, it goes away.

Just a thought.

Love you,
tk
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Old 05-29-2005, 04:45 PM   #10
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Re: Hello Again..Been Awhile. Awareness Day Succes

Robin,
Simply put, I was diagnosed last summer, after endless tests to rule out everything else. The fact my mother has it was also a factor. I also have most of the trigger points. So, lots of tests, family history, symptoms matched, most of the trigger points, etc. That's how I was dx'ed last summer, FINALLY!

Hope that helps.
__________________
Diagnosed with:

Fibromyalgia
Mitral Valve Prolapse
Tachycardia
High Blood Pressure
Nummular Eczema
Depression
Esophagitis
Solar Urticaria (but not officially yet)

 
Old 05-30-2005, 07:36 AM   #11
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Re: Hello Again..Been Awhile. Awareness Day Succes

So good to hear from you tk. I have thought of you and this board a lot, but havenít had the time to post. Now I do.

I feel pretty good. My pain is mild. I have gym every other day. If I canít do whatever sport/activity we are doing that day, Iím on the elliptical bike. After a month of that bike, I want to burn it. LOL. Good thing I only have gym for two years. And I still have school until the 23 of June. Iím taking year long bio next year. Iím taking it so if I decide to be a rheumy, I have that class down by junior year.

This summer I get to go visit my nana in Illinois. They are also forcing me to talk to my father(fun fun).

Yeah, I gotcha on all those tests. *shivers* So many are oh so familiar. Iím sorry they might not be able to operate on your back and I hope you donít have MS. They want to continue testing me for it every few years.*wrinkles nose* That thing with the Halloween bones is hilarious. ďThem bones, Them bones, Them bonesÖ.Ē Canít remember the rest of the song. LOL.

I have heard of that massage therapy treatment. We had a vocational center career day at our school and one of the medical groups was massage therapy and phlebotomy. When they asked what field we were interested in and why, that was interesting. The other two girls were interested in with premature babies(one was premature and the other had a premature nephew), then came me. I said rheumatology, they asked why, and I just said I have fibromyalgia and wanted to help other people with invisible illnesses. I shouldnít have really said that far. Three people, one after another, came out with question after question after question. OMG. Good thing my friend Nina noticed a stress headache coming on from all the people asking me all the questions. She politely told them all the questions like they were firing stress me out. Bless her.

Yes I exercise plenty. I lift some weights, I bike, and I have recently taken up walking. I stay after school a lot for French Club(donít speak it though ) and help with work. I often go for walks around our entire school building. Like I also said, I do participate in gym. My rheumy told my caseworker to tell my gym teacher ďno running and no high impact activities. I must also know not to strain myself too much. I know my limits and should tell my teacher when I cross them. And if I do anything that does hurt myself, to go into the weight or cardio room.Ē His exact words. And I also know that purple is the official color. I wear it all the time and my friends know too.(I have a whole bunch of purple school stuff.)

Now, to LostRobin. How. A LOT of doctors. I went through all these tests with all these people. Some thought I had lyme and another doctor thought I had leukemia. Finally my pediatrician sent me to a rheumy. I had to go into my family history first and my mom found out that my great-aunt has it. She also didnít tell me until recently that my great-grandmother had it because she didnít want to worry me during all the appointments. When I finally go to the rheumy, he said I had almost all of the trigger points. When. It was not long after my 13th birthday in the 7th grade. Even though I was dx'ed in the 7th grade, my rheumy thinks it was back in the 4th grade I had the first signs and the pediatrician wrote it off has growing pains. He believes I was misdiagnosed.

Anyways, I agree with tk. You should take your son to the doctor. If you havenít had him checked for mono, you should have that checked first. Itís spreading like wildfire here in Maine. No one likes to wash their hands and everyone shares their food and drinks.(This isnít just the kissing disease!)

Last but not least, GodsGirl4ever0. HI! My name is Ashley. Iím taking a shot in the dark, but does the 06 mean youíre a junior and graduating next year? How long have you had FM? Did they ever dx'ed you with growing pains, or anything else before you got dx'ed with FM? How do your friends and family accept and help you out? Sorry with all the questions. Iíve never met anyone relatively near my age with FM. Itís just cool to finally meet someone near my age.(Still love everyone else though!) I hope you respond soon!

I love all the responses from everyone. Thanks for all the support in what I did. I have to go for now. Iíll be back on soon though!

*~FireflyGurlAsh~*

 
Old 05-30-2005, 07:43 AM   #12
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Re: Hello Again..Been Awhile. Awareness Day Succes

I am just echoing what everyone else here has said, but I am SO very proud of you!! That is so awesome!!! What a great imagination and how wonderful that you took the time and the energy to support our cause. We are all so grateful. I know that you brought about a great deal of awareness-much more than you will realize-and that is just the beginning!! You have a great summer and please get the rest you need in between all that fun, ok?? Take care! PG

 
Old 05-30-2005, 09:30 AM   #13
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Re: Hello Again..Been Awhile. Awareness Day Succes

Quote:
Last but not least, GodsGirl4ever0. HI! My name is Ashley. Iím taking a shot in the dark, but does the 06 mean youíre a junior and graduating next year? How long have you had FM? Did they ever dx'ed you with growing pains, or anything else before you got dx'ed with FM? How do your friends and family accept and help you out? Sorry with all the questions. Iíve never met anyone relatively near my age with FM. Itís just cool to finally meet someone near my age.(Still love everyone else though!) I hope you respond soon!
Haha, yes, that does mean that I'm a junior (except now that school's out we are calling ourselves seniors...OH YEAH!) and I will be graduating next year. I've been looking forward to this forever, but now that is coming, I'm scared to death! Not of being a senior...of NOT being a senior this time next year... real world!! Scary. And you can always ask as many questions as you want. It's fun answering questions. LOL. I would say I've had FM since 7th grade. It started right after puberty (THANKS TK) and it all started with horrible joint pain, and fatigue, horrible headaches (weird ones that lasted about 5 minutes, but I had several a day, and they were absolutely horrible) the norm. I did get told growing pains a lot, yes, but not by a doctor, by my parents. I did accept that at first. I did get told, however, in 8th grade the doctors thought I might have a brain tumor. That was...lovely. Luckily, they were wrong. I also got that I might possibly have leukemia (I was getting a lot of unexplainable bruises which is partly why they thought that...still do get them..) but, nope, didn't have that. Went down to just anemia..nope. Lupus, nope.... then tons of other tests and finally FM. Took long enough, but probably not as long as some people around here. My immediate family, even my mother who has it also, doesn't seem to quite understand as much I would like. My brother is never around, my father...well, he's just my daddy. He's understanding as he can be. Still thinks I can do whatever whenever though. My boyfriend is very understanding. He is wonderful. I mean, he doens't UNDERSTAND, but he tries. He does whatever he can for me. Sometimes, every now and then, he just doesn't get that I can't do something. But that's to be expected. He's also saddened by the fact I sleep so much. The rest of my friends..they know about it, but they don't get too involved with that aspect of my life. It doesn't bother me though.

I've never met anyone my age with FM either. And I do love everyone else around here too, they are AWESOME, aren't they? I'm SOOOOOOOOOOOOOOOOOOOOOOOOO glad I found this board. I can totally be myself, happy, sad, confused, angry, and no one looks down on me or anything. And you all totally UNDERSTAND me.... it's so wonderful. It's something I never feel except right here on this board... thanks y'all.
__________________
Diagnosed with:

Fibromyalgia
Mitral Valve Prolapse
Tachycardia
High Blood Pressure
Nummular Eczema
Depression
Esophagitis
Solar Urticaria (but not officially yet)

 
Old 05-30-2005, 11:26 AM   #14
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Re: Hello Again..Been Awhile. Awareness Day Succes

Ashley and Julie! You guys are too sweet! I am SO glad FINALLY that we have two "youngies" who can share together. I know you both love all of us "older" (or shall I say "seasoned"!) gals and guys but I know how important it is to talk to someone your own age who is going through the same things in life that you are. I'm glad you both found each other and that you are both here with us. I'll be having fun watching you two! LOL

I love you both as if you could be my daughters, better yet, my little sisters. You COULD be my daughters! LOL I'm 46, so I think that's right up there with "OLD". I remember when my mom turned 40, I was 19, and I thought "geez, 40, it'll be FOREVER 'til I get there" HA! Oh well, better 46 than 86.

You both are great. And Ash, I am so humbled by the fact that you remember me. Julie, yw for the puberty! LOL Get ready, cuz I think we all go through puberty again some time in our 30's! LOL

Love,
tk
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Last edited by tkgoodspirit; 05-30-2005 at 07:29 PM.

 
Old 05-30-2005, 12:04 PM   #15
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Re: Hello Again..Been Awhile. Awareness Day Succes

Hey TK, don't call 49 OLD....wait 'til you're 74. I am so convinced
that a definite cause and a cure will be found in the next few years.
When I was TK's age, they were so sure it was all emotional and caused
by depression. (Most doctors only treated the depression.) If a person
asked for pain medication, a ''red flag'' went up and you were forever treated
as if you were seeking drugs. Great strides have been made in the last 10 years
and at least we're not ''waste basket'' cases anymore. Keep up the good work.
My prayers are with you.
Bilij

 
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