I am the author of the only book on the first person experience of living with and struggling against trigerminal neuralgia.
My pain started in 1979 so my experience has encompassed most of the medications, therapies, and surgeries.
If this group is as supportive and helpful as the Yahoo group I would very much like to be a part of it.
Thank you.
i live with several health conditions ,such as dercums disease,brittle asthma, dialated aortic valve with high blood pressure,steriod induced diabetes just feel that sometimes i’m living in a world of illness struggling to keep my family of 3 teenagers together which eldest {18} is expecting my first grandchild and husband thats in constant pain finding hard to walk s he awaits a knee replacement. what i need at the moment is to find some good info that i could take to docs about dercums so i could get some understanding about this disease and the pain i am in, and that it is not as rare as they seem to think
I have had chronic pain for 8yrs now. I don’t know how to deal with it. I can no longer work or do the things I use t do.I am severly depressed as I don’t know what to do with my time all day. I get anxiety really bad.Family, friends, people don’t understant chronic pain. Like my doctor and former boss both told me since I look fine on the outside people are going to assume I’m fine sure some days are bette than others but still not good enough to do the things I use to. I can’t make plans since I don’t know how I will wake up feeling. I use to be happy, outgoing, very sociable. I use to have a lot of friends not any more. I desperatly need a group to talk to that is in the same situation. I have so much anger in me.
my name is tom and i had meningitis at 2 months old and developed hydrocephalus at 5 months
I’ve been diagnosed with systemic lupus and I already have arthuritis pretty bad. My legs hurt and lower back just aches, all the time. I stay tired all the time.
Hi all - I was diagnosed with celiac disease with the usual trials and tribulations, and continue to experience long-term ill effects of having an autoimmune disease that went unaddressed and undiagnosed for quite some time. I am looking for a positive place to share, and if I’m having a negative day, people who can support me and remind me that I only am hurting myself when I let medical issues get the best of me! And I hope to do the same for others!
I’m looking for other people who understand what it’s like to live with Behcet’s Disease. I’m hoping to make some new friends and gain some support. I live in Alaska and not many people here have even heard of it. Not even many of the doctors.
Hello My name is Margie Stephans. I have IC. I was first diagnosed with it Mar. 05. This diease can really take your life. I just like to learn from others how they deal with this day in and day out. I want to connect with others that is dealing with ic. I want to say hi to others that are in CarePlace. Margie Stephans
Hi, I’m Lela and have learned I have RA and wanted to connect with others that have it so I may learn about it all, right now I do not know much of anything, but wnt to learn desperately!!
Hey! I’m a 19 year old photographer.
I have severe MPS, FMS, IBS, possibly others. You know how it goes.
Because it not only affects me but other members of my family,and I have other friends I have met over the years,who are like me,have it,and other diseases that usually go along with it,and if it was"nt for my friends that I have found on my computer,things would be much worse.My name is Shirley,I live in Louisiana,
Want to learn more about spinal stenosis and also dealing with chronic pain in the lower back due to severe Arthirtis and they will not operate due to high risk
I am young and in pain!
I am 37 and have lived with rheumatoid arthritis since age 24 and fibromyalgia a few years less. I haven’t experienced any remission. I am mobile, but my feet are breaking down, I need shoulder and knee replacements, and am likely to have a second hand/wrist surgery soon.
I’ve found hope by founding Rest Ministries in 1997, a Christian organization that serves the chronically ill. Through 85,000 visitors to our web site each month, I am able to oversee a large group of volunteers who encourage people daily. Our video that shares my story is at http://www.restministries.org
I am also the author of a variety of books on chronic illness, such as:
Mosaic Moments: Devotionals for the Chronically Ill
Why Can’t I Make People Understand? Discovering the validation those with chronic illness see and why
Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend
HopeKeepers Magazine, editor
See http://www.comfortzonebooks.com
We also are the sponsors of National Invisible Chronic Illness Awareness Week, held annually in September at http://www.invisibleillness.com
I am joining this community currently to find out more about people who are in their 20s-30s-40s and how they cope with the degeneration of their illness and being a mom too. (I have a 4 year old son - we adopted him at birth since I was unable to conceive.)
I’m also interested in finding out more about what people are seeking and need. We do a lot of education, especially to churches, on how to reach out to the chronically ill, etc.
You may be interested to know about 1 in 2 people live with illness and 96% of it is INVISIBLE.
My mother has MEN1 an I’m following her path. Not exactally something I’ ;pplomg forward to.
I was born with and suffering from Spinal Stenosis. I have had 3 major spine surgeries due to this condition.
AM A DOC STUDENT AND WILLIN TO HELP /LEARN
Hi to all of you,
I am a new member who is hoping to share information with all of you. I had consultation with a spinal surgeon who made the fusion surgery seem very difficult. It seems like it would be the only way for me to deal with a scioliosis and spinal stenosis. I am still working but I don’t know for how long. I am having problems with the hands due to the nerve damage from the polio.
Bev
Hi this is Rick and I am interested in PPS as I am experiencing it right now. Would like to see if any body else is having the same problems that I am experiencing. Very weak back muscles making it impossible to stand up straight without having support. Very sore and stiff back.
Living not-so-well with this condition for about a year. Have suffered major pain and losses, including my job. Looking for support and info on diet, pain mgmt, coping, and parenting. Thank you.