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
Posted by trueblue (Member # 7348) on :
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
Posted by robi (Member # 5547) on :
Yep,I can do this. I'll mail.
robi
Posted by robi (Member # 5547) on :
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
Posted by lymemomtooo (Member # 5396) on :
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
Posted by Melanie Reber (Member # 3707) on :
Thank you each so much for responding! I think we are on our way now!
M
Posted by Melanie Reber (Member # 3707) on :
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 ]
Posted by Melanie Reber (Member # 3707) on :
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 ]
Posted by Beverly (Member # 1271) on :
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. Posted by Melanie Reber (Member # 3707) on :
Hope has conspired with the wind
and blown away the demons of despair.
-Maya Angelou Posted by TheCrimeOfLyme (Member # 4019) on :
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)
Posted by Melanie Reber (Member # 3707) on :
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 ]
Posted by trueblue (Member # 7348) on :
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.
Posted by Melanie Reber (Member # 3707) on :
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 ]
Posted by Melanie Reber (Member # 3707) on :
We are living art, created to hang on, stand up, forbear, continue
and encourage others.
-Maya Angelou Posted by Andie333 (Member # 7370) on :
Wonderful project, Melanie, and I love the Angelou quote.
I've sent you a pm and hope I can help.
Andie
Posted by trails (Member # 1620) on :
Awesome.
I can contribute support via the phone on a limited basis.
will email you.
Posted by Tincup (Member # 5829) on :
You are a nice lady.... Melanie.
Thanks!
Hi Beverly!!!
Posted by Melanie Reber (Member # 3707) on :
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 ]
Posted by Melanie Reber (Member # 3707) on :
Hope does not take away your problems.
It can lift you above them.
-Maya Angelou Posted by Melanie Reber (Member # 3707) on :
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 ]
Posted by ConnieMc (Member # 191) on :
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.
Posted by Melanie Reber (Member # 3707) on :
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
Posted by Melanie Reber (Member # 3707) on :
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 ]
Posted by Melanie Reber (Member # 3707) on :
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! Posted by Melanie Reber (Member # 3707) on :
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 ]
Posted by lymesux (Member # 6248) on :
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!!
Posted by Melanie Reber (Member # 3707) on :
Thanks sweet thing,
Sending you info on #8! Posted by Melanie Reber (Member # 3707) on :
Hope and fear cannot occupy the same space at the same time.
Invite one to stay.
- Maya Angelou Posted by davidx (Member # 8326) on :
Melanie-
I have tried sending you a follow up msg but you are so popular that your inbox is full!
~David
Posted by Melanie Reber (Member # 3707) on :
Oh Goodness David, I'm so sorry!
Thanks for letting me know...I will have to do some shuffeling of info to empty it. In the meantime, please feel free to email me directly, OK?
M
Posted by Melanie Reber (Member # 3707) on :
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.''
Posted by trueblue (Member # 7348) on :
Thank you, Melanie! Posted by Melanie Reber (Member # 3707) on :
In Need of:
9. HBO treatment experience needed. Found- THANK YOU Julia!
[ 19. July 2006, 07:54 PM: Message edited by: Melanie Reber ]
Posted by Melanie Reber (Member # 3707) on :
The desire to reach for the stars is ambitious.
The desire to reach hearts is wise.
- Maya Angelou Posted by BOEJR (Member # 1734) on :
Hi Melanie,
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
Posted by Melanie Reber (Member # 3707) on :
Thank you so much Julia,
I will forward on your information to #9! Posted by Melanie Reber (Member # 3707) on :
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 Angelou Posted by BOEJR (Member # 1734) on :
Happy to be of any service I can : )
Blessings,
Julia
Posted by Melanie Reber (Member # 3707) on :
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.
Posted by Melanie Reber (Member # 3707) on :
I can be changed by what happens to me.
I refuse to be reduced by it.
- Maya Angelou Posted by Melanie Reber (Member # 3707) on :
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 ]
Posted by Melanie Reber (Member # 3707) on :
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.''
Posted by Melanie Reber (Member # 3707) on :
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