Member and Mods: discussion & debate

This is a repost of the post I placed on my regular threads

Hi, popping in. I was posting with another member. I thought sharing the below information may be helpful to you .

The link www.needymeds.org is to a web site started by a Social Worker and a doc. It is a tricky site to use. The first page leads to a several hundred resource pages. But I think this first page, does not project the wealth that lies beneath. Be patient when following the links within the site. There are sections that are disease and drug specific. The specific page then links to lists of organizations that provide monetary or other types of assistance.

Register first and do the request for assistances form. Reason: the request for assistance form is filed. If you apply to 1 or 20 organizations/companies, the forms don't need to be repeatedly filled out.  The system is designed to pull information from the original form. There may be a few particulars that need to be added to a companies/organizations form.

All the pharmaceutical companies have patient assistance programs. All the drug manufactures are listed there

The other way to reach drug manufactures is 1. call the manufactuer patient assistance number(goolge keywords: drug name and manufacturer, then to webpage>>>patient assistance. Very time consuming.

There is so much more on www.needymeds.org. It took a bit of time to wander through the whole site. I've shared a telephone walk through with many friends and relatives. I even called healthcare facilities to tell them about this link.

For completeness, there are many ways to get financial assistance for whatever you need. There are organizations that will do things for you i.e volunteers that buy groceries, drive, install handrails, build wheelchair ramps.

How to find the info besides from the link above?  FIND the SOCIAL WORKER(SW).  It's there job to know these things   Talk to all of the following 1. cancer center SW,  2.hospital SW, 3. Insurance companies SW, 4. County SW. 5. church outreach leader.

I requested from my insurance carrier, a consult with a SW. That one appointment with the insurance carrier Social Worker, led to grants totaling $10,550. The meeting with the cancer centers SW, led to coverage of neulasta  for $4000.00.

 My hope in creating this discussion area, is that it allows us to come to a better understanding of each other. Talking  about and resolving  our problems is better than not finding a resolution.

IMPORTANT MODS and Melissa; Point of clarification which is very serious to the discussion. In my first post to you I said I was going to post to my usual places. I immediately started doing that and completed the posting on the threads. It wasn't until after I posted to the threads that I read your PM. Re: the URL and you suggesting not spamming

In regard to the URL, I went back to all the threads and corrected each one individually.

I never perceived my placing the post on my usual threads as spamming. 

SO, where we disagree is what the definition of spamming is and how many posts would be acceptable. Your words "1-3".  I have more threads than that. I think what you did and the reasoning for doing it is weak .

My world is bigger than 3, not sure how big. Dealing with placing a number on it is a bit bizarre. Pondered long about this approach of doing a topic thread. There are very divergent points of view, but only one of us has a the ability to delete the others post.

Each of my own Topic threads has a different purpose.

Topic:Just Diagnosed -Get prepared is for newbies. The whole thread is info on suggestions either written or linked. A description of how to find money is appropriate to that thread. The linkage to drug companies and organizations in one thread is huge for a newbie to store for immediate or future use. Deleted

Topic: List Organizations:That fund research & help Patients directly: is to assist in the evaluation of 501c3 charitable organizations. www.needymeds.org  is a 501c3 charitable organization. Deleted

Topic: Warm & fuzzy owls, goats, kitties, dogs, birds ETC Pic and Links: The mission of this thread has evolved. The inclusion on the post on needy meds was for the express purpose that any member wandering through to have a laugh, may come across it and find it useful. Nothing like found money to make one be happy. Deleted

Topic: Pinktober Revolution purpose is to be an activist thread. All of what is in needymeds.org is activist related. Deleted

Topic: CONSTIPATION-problem with so many of our drugs: In needymeds.org there are links to disease and drug specifics web sites. Constipation isn't a fun thing to talk about. Constipation can lead to many problem diseases or outcomes that are linked in needymeds.. Deleted. 

Topic: Insomnia thread: The post began there b/c a member had a need to find resources. Intact i.e. not deleted.    

The remaining deleted posts were on  threads that I commonly link info too. Very few cross post on these threads. But the key is I post on them. They weren't chosen at random. As I stated in my PM and a pervious PM, I did intentionally spam related to 2D6 thread. Meaning I intentionally went to threads and posted.

A key problem in all of this is by your words to me, limiting where people travel and what they want to share in their travels of the threads. If I had dropped in on 18 threads and just said hello, you wouldn't question the action. But you are objecting that I gave a message that led to a different place and described how to access a Social Worker for assistance. Not as uncommon as you think. It's done all over the threads.

Awaiting your reply  sassy 

Melissa, your choice, you have the delete button. I can't stop that .

 Actually, that's a big part of the problem. The deletes weren't done in a considered manor.

I will be placing the post on my threads for the reasons stated: The post is appropriate to my topic threads and the thread you suggested. Thanks for the link..

The last paragraph, re:limiting travels and sharing of thoughts. Big . Huge. BCO is your web page. You can make any rule you want within the guidelines of a 501c3 charitable organization.

You are taking on a mammoth task. Monitoring everyone for every post. It boggles my mind.

Melissa the link you gave me is broken

BTW since your intent is to delete. I wasn't going to bring up the blocking of access, but that was very not nice. All this trouble over a helpful post. I'm worn out. Must ponder some more.

I have allot of housekeeping threads. The 5 mentioned above and the ones that I watch to keep active i.e.PORT placement .There is time spent on those that take away from my life. But a need is there.

But you've taken something from me with this, it will take awhile to work it through.

At least you understand I didn't place the posts before I read your PM. It was a huge PITA to go and correct each post  with two hyperlinks in each. Then the deletes. Life wasted.

Melissa it's your job, do what you feel is necessary.

Melissa, when people are afraid to comment on something, then something is wrong in the relationship. Keeping quiet on both sides isn't going to make it better.

Thanks exbr for your opinion sassy

Sheila---this is far from private. It's at the farthest distance from private that can be. Limitation of thought harkens back to a much earlier time. Then second to that if someone hesitates to post b/c of retribution what is that saying.

Ex 18 is just a number, it could have been 1 or a 100. I just relooked at list. 4(5 if you count Insomnia thread) of 18 were friends i.e. social threads. All the others were working threads. A working thread by my definition is where one obtains information or shares information. While working on that thread, one may develop friendships which is a very nice occurrence. i.e.  HOTFLASH forum. I was on there extensively for along time. We did great work together.  Now many of the early people are gone. The thread has slowed down. But the info is important. I bump it periodically.

The comment that Melissa(mod) made in her post to me RE: what if everyone did it. My reaction was, it would be wonderful. The fact is, it is happening all over the boards. People share info when they think it has value to others.

Thinking in terms of numbers shouldn't be in the equation. One persons sphere may be our star system and another's the universe. Is one better or worse than the other. No just different.

Hi Wrenn  Thanks Great question for this point in time.

1. open discussion and debate of what ever someone wants to discuss.

2. Loss of fear by members of retribution for saying what they think.

3. That the Mods use of the DELETE button be used more judiciously

4. Limitation of posting by members to any thread not be interfered with by the Mods. Let the threads determine it.

Teka ---The lion roars

Teka  Hugs back........."No FEAR" a very nice feeling

Interesting the add/remove button isn't working ?

Thanks 2TA  It's okay now.