anyone on this board from De area willing to talk via a real phone? Kristen maybe?

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Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 8/17/2007 4:27 PM (GMT -7)   
   I took a photo today of my face . Its been a ***** of day. I need to get a darn Dr. with a brain and its like hunting for the Red October. I was wondering if any of you connect on a basis outside of typing on healing well?

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/17/2007 5:18 PM (GMT -7)   
Hi Chaya:

I just wanted to say welcome to our forum. Sorry you've had a bad day. I saw your earlier post about John Hopkins Hospital. I have to say that my experience with them was a bad one too. The doctors that saw me wanted to undiagnosed me and I wasn't having a part of that. I live in the metro DC area and I go to the National Naval Medical Center. Some of my docs are good and some aren't.

I'm sorry you're having a tough time finding anyone to help you. I hope that you find a doctor soon that will listen to you and help you get your pain under control. To answer your question so of the members here exchange phone calls time to time, or emails. We try to meet up in the chat room daily and talk with each other.

I understand your frustration I've had lupus 19 years now and I'm also sick with a rare blood cancer. I'm dying and there's not a darn thing I can do about it. Except to hold on and go for the ride. Anyway, welcome again and looking forward to hearing from you.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 8/17/2007 5:28 PM (GMT -7)   
I would love to meet up with you guys in chat? where? I am so sorry about your cancer, truly! Is it a side effect from lupus treatment?

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/17/2007 5:39 PM (GMT -7)   
Hi Chaya:

You can go into the chat room from this page. If you look to the right under forum links you'll see the link to the chat rooms. I'm going to go into the room now, if you'd like to chat. Yes, they think my usage of cytoxan to treat my lupus is what caused my cancer. It's a risk we've got to take and face.

Looking forward to seeing you in the chat room. I'm off to the room now.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 8/17/2007 7:46 PM (GMT -7)   
Hi Chaya,

I haven't been around much lately . . . but if you look at the end of my signature . . . you'll see a clickable link called "Chapter Locater". Click on that to find the nearest Lupus Foundation Chapter. After you find your nearest chapter, give them a call and they can give you some Dr. referrals.

You could also ask about Support Group meetings in your area. I went to one meeting and asked everyone there what doctor they used. It was a great start and I found a caring knowledgeable doctor.

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
 
Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 8/19/2007 4:52 PM (GMT -7)   
Chaya,

I go to a local Lupus support group every month and I love it. Being face to face with someone and actually being able to understand them and vice versa is very refreshing. When you try to explain what you go through to people that could not begin to understand its so frustrating. The chat room here is nice too even though usually I can't make it since I'm at work. I hope you can find the support you need. Its out there!!

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


http://www.healingwell.com/donate


MGeddes
New Member


Date Joined Jul 2007
Total Posts : 18
   Posted 8/20/2007 5:09 PM (GMT -7)   
Hi Chaya... I am from NE PA... I would be willing to talk via phone. I have a ton of cell phone minutes. If you are interested email me @ emma@intergrafix.net or mg@kubishinandator.com
SLE diagnosed 2003, Pulmonary Embolism 2002

Plaquenil 200mg 2xday, Coumadin 15.5mg alternating with 17.5 mg per day, Cellcept 500mg 2xday

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