Topic: Getting connected...National Mentor program
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Dear Friends,
As many of you are well aware, these illnesses that we face can lead to an overwhelming feeling of isolation and loneliness.
And with that, comes an intense desire to reach out to others who are also experiencing a loss of connective-ness.
Support manifests in many ways... -a shoulder to lean on -a hand to hold -a tiny bit of validation -an unexpected visit -a surprise Email -a sympathetic voice hundreds of miles away...
Some of us offer of ourselves... -in prayer -some with writings -some with phone calls -and some with research...
I think each way of offering support that is chosen is very much needed and necessary...but we each can't do it all.
I would like to initiate a Mentor program in order to connect those that are seeking support with those who have the time and energy to give it in whatever manner possible.
There are many patients that do not have access to local or state groups or meetings...there are also many patients that do not have access to the internet, or cannot use the phone, or that have mobility issues which keep them at home.
These patients are usually the ones that need support the most. But finding it proves to be a difficult challenge.
If you are in the position of providing any one of the above types of support... or, if you are one of the many who are needing support...
Pease consider contacting me personally, or posting here.
I am not asking for any long-term commitments, I know that time is valuable, and I also know that with these illnesses our level of involvement fluctuates. This is to be expected.
The unexpected, to me at least, is that whenever I am offering my little bit of help to others...I always find that it is me who is on the receiving end too!
So, my friends... This is open to one and all, but I would like to begin with a bit of organization. When you reply, will you please use this format as much as possible?
In need of:
Will contribute:
Example: In need of: someone to call to speak with about co-infections. wanting to discuss similar symptoms...and gain information from an experienced and knowledgeable patient.
Will contribute: long distance phone time on a limited basis. have some experience in TBD co-infections.
Voila! A match!
There are patients waiting for help as I type this, so lets get this going, shall we?
Once again, please feel free to reply here, or to contact me personally. I will then post your needs or contributions anonymously, if preferred. (my Email is at the bottom of this post)
Please put ``support'' in the subject line.
Thank you all in advance!
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank you, Melanie! (for doing this and explaining it so clearly)
I could really use some help and am able to help, as well. I'll email you.
trueblue
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Yep,I can do this. I'll mail.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I just sent an email to offer my help. I already feel better. If you are reading this and hesitate because you think you don't have the skils or whatever ......... well forget it. Email now!
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Melanie, count me in to help in some way..Maybe email chat to someone that you think I can help..Or to mail pick me ups, cards or something..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Thank you each so much for responding! I think we are on our way now!
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
In Need of:
1. Short-term help in NC needed ASAP. Found! Thank you Beth and Connie
2. Phone support needed. ``Someone to call to speak with (that knows what this is like) able to discuss co-infections, treatment, similar symptoms...and gain information from a more experienced and knowledgeable patient. (Co-infections are a completely new arena for me.) A person at the end of the line when I most need it. A phone-a-lymie, really. ``
3. Limited Research needed. Requires searching the net for verification and any additional information on LD fatalities.
[ 15. July 2006, 12:43 PM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Will Contribute:
1. Daytime long-distance phone support. ``Experienced with meds, good at alternatives, herbs, have used a lot of supplements. I can listen and be sympathetic but I am better at informing and educating.''
2. Support. ``Maybe email chat to someone that you think I can help..Or to mail pick me ups, cards or something''
[ 15. July 2006, 12:45 PM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Sure Melaine,
I think I can do something, probably better at support than information. I could mail pick-me -ups/cards, emails, and some long distance. Beverly
PS: This is a wonderful thing you are doing. Posts: 6638 | From Michigan | Registered: Jun 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hope has conspired with the wind
and blown away the demons of despair.
-Maya AngelouPosts: 7052 | From Colorado | Registered: Mar 2003
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I can help. I had posted my number years ago for help and my phone rang several several times and I never minded until my daughter went into kidney failure and I experienced QUITE a rude lymmie, so I had to pull my number.
BUT if its given out again, thats great. I can do phone ( I prefer it)
I can do email support ( less preferred, but I can do it)
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning Miss Beverly and Miss Jodie!
Soooo, nice to see you reaching out to help again! (and just nice to see you, period )
I will add in your Contributions shortly along with another Need that I am waiting to hear back about.
Thanks so much to each of you! M
(edited to remove the complicated numbering system )
[ 14. July 2006, 09:15 AM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Melanie Reber: Can anyone offer a practical solution to clear this problem up?
I don't want this to be confusing to anyone, and it is already becoming somewhat that way to me I NEED practical organization in my little world, and want to keep this simple, yet organized for everyone's benefit.
M
How about 2 separate threads?
One to post all the offers and requests together and the other for people to make offers and/or requests.
That's as simple as I can think of at the moment. (You can continue to just number them as you have or not.)
Sorry, if I'm making this more confusing, that's not my intent.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
In Need of:
4. Email Lyme Buddy needed. ``Hello. I am looking for a Lyme Buddy or Buddies.''
5. Experienced writer needed. Found- Thank you Andie!
Will Contribute:
3. Support. ``I could mail pick-me -ups/cards, emails, and some long distance. ''
4. Support. ``I can do phone ( I prefer it) I can do email support ( less preferred, but I can do it) ''
[ 15. July 2006, 12:42 PM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
We are living art, created to hang on, stand up, forbear, continue
and encourage others.
-Maya AngelouPosts: 7052 | From Colorado | Registered: Mar 2003
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Wonderful project, Melanie, and I love the Angelou quote.
I've sent you a pm and hope I can help.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Awesome.
I can contribute support via the phone on a limited basis.
will email you.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
In Need of:
6. Various help needed in AZ. ``I am getting pretty isolated here as I wait to be able to get out and about and make friends in my new town. I tend to have a list of things that have gone undone for a long time that perhaps someone could help keep me on track.'' Filing of paperwork- help with workman's comp, medical retirement, SSI, rehab training- some grocery shopping and meal planning- local church or Bible study. (this may involve several people willing to help locally and from a distance)
Will Contribute:
5. Email Support. ``Periodic email support!''
6. Limited phone Support. ``I have experience with co-infections, different LLMDs and states and insurance issues, some limited disability experience, and long time lymie experience!''
[ 15. July 2006, 12:47 PM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hope does not take away your problems.
It can lift you above them.
-Maya AngelouPosts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
In Need of:
7. Limited Legal help needed. ``advice re: 'Intellectual property'. specifically on fine art, published articles and website issues.''
[ 15. July 2006, 12:50 PM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Melanie,
I am now a disability advocate in NC, and work with a network of professionals across the country called Disability Advocates of America. Website: www.disability-advocate.com
I am working on 7-8 Lyme cases here in NC, and and 1 in SC. I have also referred several people across the country to our network advocates in other states and have assisted in helping the advocates who do not know about Lyme and it's effects to teach them the best ways to approach a disability claim.
So anyone is welcome to use me as a resource for disability claims. I have now won 3 Lyme cases at the initial and recon levels and helped them avoid the long wait for a hearing. I also have some cases waiting for their hearing dates.
Posts: 2275 | From NC | Registered: Oct 2000
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning Miss Connie,
Wow, I am sure that your help will be very utilized!
THANK YOU for all that you do now for so many, and for being willing to do even more!
Bluebird, Trails, Andie, and TC,
Special thanks to each of you- it is so wonderful that you all are willing to help with this!
I SOOOO appreciate each of you!
Much love, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Will Contribute:
7. Disability help. ``I am now a disability advocate in NC, and work with a network of professionals across the country called Disability Advocates of America...anyone is welcome to use me as a resource for disability claims.'' (see above post for more information)
8. Support. ``Will talk long distance or email support. Have experience in: chronic pain, being long-term undiagnosed, balancing school and lyme, and being single/dating with lyme. Also support to young adults (20's to early 30's)''
[ 16. July 2006, 11:38 AM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning all,
Just a small reminder... if you are wishing to participate with this-
I need for you to send your contact information along with your other messages.
If email support: Email address plaese. If phone support: Phone number please. If snail mail: Address please.
Remember, some that are seeking support are not LymeNet members, so can not PM you to contact you.
Also, if you have any other limitations on contact time such as time of day, specific day, or whatever else...please let me know.
And if you would prefer to be the one who makes the initial cantact, please let me know.
OK, just trying to gather all important information. Thank you each SO much! Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
In Need of: ***
8. Pediatric LD or RA experience needed for 8 yo. Found! THANK YOU Lymesux!
[ 05. August 2006, 02:46 PM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Hi Mel, I am happy to do email support and limited phone chats - and I have kids with Lyme, if someone just needs an ear to bounce things off of.
Let me know what you need and thank you for all that you do!!
Posts: 799 | From home | Registered: Sep 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Thanks sweet thing,
Sending you info on #8! Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hope and fear cannot occupy the same space at the same time.
Invite one to stay.
- Maya AngelouPosts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Will Contribute:
9. Support. ``I am happy to do email support and limited phone chats - and I have kids with Lyme, if someone just needs an ear to bounce things off of.''
10. Email Support. ``It's funny with this disease because sometimes I feel like I could offer some help and other times I really feel like I could use some help just getting through this...I would be happy to email back and forth with people who just want to vent and have someone to really listen and respond to. Perhaps even better would be with someone around my age (I am 31).''
11. Phone Support. ``I am someone in need of support on bad days, but who can give support on better days. I'm sure you know how that feels. If I could talk to someone about symptoms and lend support that way I would be glad to.''
Posts: 7052 | From Colorado | Registered: Mar 2003
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank you, Melanie!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
In Need of:
9. HBO treatment experience needed. Found- THANK YOU Julia!
[ 19. July 2006, 07:54 PM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
The desire to reach for the stars is ambitious.
The desire to reach hearts is wise.
- Maya AngelouPosts: 7052 | From Colorado | Registered: Mar 2003
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If you are interested in HBOT I will tell you that it has worked for me. I believe in the therapy to the point that I bought my own Sechrist..
If you are looking into HBOT for hearing loss or lyme then here is a research site that has material on both. You can also call or email Susan with any questions you may have.
Feel free to contact me anytime if you have any questions the number is on my profile link to my webpage : )
Blessings,
Julia Sudylo RN/CHT
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Thank you so much Julia,
I will forward on your information to #9! Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
THANK YOU to everyone for so generously reaching out to others!
Loneliness can be so real
it can feel like sand in the palm of your hand.
- Maya AngelouPosts: 7052 | From Colorado | Registered: Mar 2003
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-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
In Need of:
10. Patient with very limited budget needs help with supplements. ``I also am supposed to be taking the supplements on DR. B's list, but am only taking Vitamin C at this time.'' If anyone would like to help with one or more supplements for this person, please let me know.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I can be changed by what happens to me.
I refuse to be reduced by it.
- Maya AngelouPosts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
In Need of:
11. Patient with IV meds needs IV supplies. Found! THANK YOU Pocono Lyme and Lymemomtoo!
[ 05. August 2006, 02:53 PM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Will Contribute:
12. Email and IM Support. ''I'm a little sporadic as I'm sick like all of us. But I can probably respond within a day. I've done a lot of immune support work, a lot of allergy testing and desensitization, I had endometriosis (and a hysterectomy), and I'm currently doing IV rocephin with a central line. I'd be interested in getting help with co-infections, and opportunistic infections.''
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
You may not think you can reach it. Climb anyawy.
You may not think you'll be heard. Speak anyway.
You may not think you can change things.
Try anyway.
- Maya AngelouPosts: 7052 | From Colorado | Registered: Mar 2003
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