Posted by BG on May 29, 1999 at 22:03:56:
In Reply to: New to the Board Husband in Pain posted by Fran on May 29, 1999 at 21:26:08:
Hi my name is Bobby Gilliam and I have CH. I am new to the boards, but I am a former social worker and have been trying to get people to the help they need. Unfortunately the resource are too few and too far between sometimes. I have been working with a great bunch of guys and one of the suggestions was to create a "welcome program" and provide newcomers with a guide (not a councilor, we are not professionals). My job is to help you find the information you need for you to take control of your situation based on your decisions. You will soon find that this disease is just now being recognized and the conflicting information will make you crazy. My advice to you is to get all the information you can find, and then you and your husband make your own decisions.
Social Services.
I can only help you arrange your own in your area. The only benefit I can provide is knowing how it works and how best to work the system. If I have to I will make calls on your behalf to talk with your social worker and explain the situation. BE FORWARNED the system is not set up for orphan diseases like ours. A lot of this will also depend on the people I have to deal with, and sometimes people can be a headache. I am not the best there is because I have cluster headaches every day, but I am better than nothing and I wish I had someone had been there for me, that knew what was going on.
Chat, my finances do not permit me to call you directly but below is a form that you can set an appointment and I will chat with you and your husband.
Time. this is a real problem for me as I am trying to help set up an organization for people like us. I won't take on too many people at this time, but those I do, I will give 110%.
Payment: none. However, I do expect this to be a teacher/student relationship. Together we are going to learn to help each other and as all good teachers do, they hope the student will excel past the teacher. The idea here is to teach for action. So while I don't ask for money, I do ask for something much more valuable. I ask you for your time. You can always get more money, but you can't get more time. If I am of any help to you, please do the same for at least 3 more people like yourself. I am doing all I can, but I can't do it alone. I have CH too.
PS if you are like I was when I was new to this site, I constantly scanned the message board to see if anyone would talk back. IF it take a few minutes for the follow-up help to appear, be patient, I am working on it.
Stay Strong (and in my personal opinion) from what you said in your message I know you can be.
ATTN. Barb
I know you like a book but I never know what page you are on. Ha ha. I am sorry, but I would really appreciate when the form appears if you would take a copy for our files. I could do it if I took the time to learn, but I would really like to get some more done on the HELP/OUCH proposal and I have a cluster coming on. Thanks Bobby