My daughter has set up a chat room for Lyme Teens on Wednesday evenings (5pm pacific, 8 Eastern.) Here is her announcement below... please pass this on to anyone you think might be interested! ----------------- Join me in starting an online support group for young adults and teens with lyme disease and/or associated diseases.
My name is Silver Feldman. I live in LA and I have been really sick with Lyme disease and other co-infections for a little over 4 years.
My family and I have become active in spreading information about lyme and co-infections. My mother and I have set up a website called www.lymesucks.org. I've spoken to a lot of people both my age (and older) about treatments, frustrations, doctors, and life. Something I've found to be true for myself, and I'm sure you too can identify with, is how lonely it is to be sick with this disease.
When I was in high school, my friends were great, but if I wasn't there for a week they forgot I existed. Even now, out of high school and being in the real world, I have find it difficult to make friends who I can trust to tell what's going on in my life.
Since I have spoken with other Lymies, I know I'm not the only one feeling lonely and isolated. So I am creating a support group you for teens. You don't have to go anywhere or get dressed. It'll be brought to you in the comfort of your home. Online support.
I'm still working on the technical kinks, but on Wednesday nights 5pm western (8pm eastern) we will meet in a chat room and discuss life, treatments, feelings, frustrations, doctors, and maybe become the friends we wish we had.
We aren't alone in this, and by connecting with others who feel the same way we can enhance our daily lives.
Go to silverfeldman.net. Check it out. Email me your screen name and your real name and tell me about yourself, and I'll send you an invitation to join the chat room at the specified time.
I am flexible as to the day --- let me know if Wednesdays does not work for you. Please feel free to invite other people in to the chat room as long as you feel it is safe to bring that person in.
Remember this a support group to help yourself and others get through this difficult time.
By no means will we be just talking about health, we will be talking about our lives, dreams, goals and feelings. We are here to support each other how ever we can.
If you aren't feeling up to joining for a session... we UNDERSTAND! How about just "listening?"
up for TEENS Bettyg
Posted by humanbeing (Member # 8572) on :
Orion, I read Silver and your story on the lymesucks site. It's an awsome site and you guys are great for helping others in this way...
Is it true that she is really cured of lyme? How long has it been since she started the rocket scientist treatments?
And how about you?
I am about to endure the IV route....
Thanks!
Posted by Carol B (Member # 9110) on :
Thanks- I am going to pass this along to my 15 year old daughter, who just started treatment for Lyme. Carol
Posted by wrotek (Member # 5354) on :
i don`t know how to enter the chat, the long ling doesn`t work and website doesn`t contain any links
Posted by bettyg (Member # 6147) on :
I was excited to see this posted the other day. Many teens on here, and now a place to go that is moderated also. I asked Lou B to "feature" this so other teens can see this, and it will not get buried. Bettyg Posted by lou (Member # 81) on :
Maybe people already know this, but there is also an email group for teens, so now you can chat and email both.
Orion, I just took the time to check out the 2 links you showed, and they do not work as Poland's member replied to above.
Hope you can work out the bugs soon, and please advise us WHEN it is fixed ok! Thank you.
Lou, thanks for showing the other site for teens; great place to have this info too for a variety of places for teens to go. Bettyg
Posted by Melanie Reber (Member # 3707) on :
Betty and others... you will need to start at: www.silverfeldman.net and it will give you directions from there.
Thank you Orion and Silver! (from another LA native)
Melanie
Posted by MysteryGirl44 (Member # 10201) on :
Orion, thanks a lot for making this site! I'm going to join it right now. Posted by jazzygal (Member # 9145) on :
My 13 year old daughter wants to write a regular column in the Public Health Alert newspaper for Kids/Teens.
She wants to include topics such as:
What it is like to have chronically ill parents...questions kids may ask. How kids/teens deal with their own chronic illnesses How illness has effected my family
She also wants to explore health issues that are common with teenagers such as : Anorexia, bulemia, "cutting" or self-injury, depression, anger management, being bullied, etc...
So if you could help me spread this information to all the Lyme communities, and other chronic illness forums with families that would have kids/teens that would be interested in submitting questions or article suggestions, i would appreciate it!
Have kids/teens send questions to [email protected] with JUST ASK LAURA in the subject field.
This is just in the beginning stages as Laura would like to hear from other kids/teens about what they would like to see in a column especially geared to their interests.
PLEASE PASS THIS ON TO ALL OTHER FORUMS SO WE CAN GET GREATER PARTICIPATION FROM OUR KIDS! ------------------------ The information presented in this email, the PHA newspaper or website is for informational purposes only. No information should be considered medical advice. Any information provided should not be used to take the place of advice from your personal physician or other professional. Links to other sites are provided for ease of research. Information on those sites is the opinion of those who publish the sites and is not necessarily that of the PHA.
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