Sesheta
03-24-2004, 03:53 PM
Hi to you all again! I'm a returning IC-er and am very glad to be back. With work and family, I ran out of time and energy to participate in the boards and talks earlier. I met Jill in 1997 at a Pain Symposium, and it changed my life forever!! For the good. The best part was that I actually felt for the first time in my life that I wasn't crazy. I've been experiencing IC symtpons since I was 4 years old; I'm 52 now.
I've retired and am on permament disability because of my IC, so now I have the time to participate in the site. Before, I was always too busy with work and family to participate very much. I am soooooooooo impressed with what Jill has done with this site.
Anyway, I'm still struggling with IC. I too had a total hysterectomy in 1993 because of unexplained pelvic pain and had corrective surgery on my bladder and uretha at the same time. And guess what. I still had and have the same pain. Grrrrrrrrrrr!! I feel now that my surgery wasn't necessary, but oh well -- can't change that now.
I have really struggled with this disease because I live in a very, very isolated part of California. I know it's hard to imagine a spot in California being isolated, but it is. I'm in Bishop, CA and Reno NV is 200 miles north of us and Los Angeles CA is 300 miles south of us. My gyn-urologist is in Long Beach CA. She's awesome. But I can't get down to see her very often because it's a 5 hour drive. I can't even get instillations done here any more. My regular gynecologist did them at first, but then didn't want to do them any more. My family doctor won't do them either. I've been offered many times to do them myself, but I am not steady enough to be able to do it.
In December of 2002, I had double knee replacement surgery because of severe osteo-arthirits. Talk about a severe flare!! After the surgery, I was in the hospital for 2 weeks because I became anemic and lost a lot of blood. But all the meds and stuff gave me a severe flare. It took about a year to simmer down, but I'm in a bad time right now again. My bladder spasms and contracts so much that when I take a bath, it causes waves in the bathwater. Ouch!! and Ouch!!
So, for now, I'm using a Durasgeic Patch for pain, Vioxx and Ditropan XL for spasms, IC diet, trying some new supplements I found on this site, and plenty of rest. I just can't do what I used to do, which is very, very hard for me. I've led a very active life, and this is the pits. As far as treatment goes, you name it -- I've tried it. Sometimes I get relief for awhile, but then I get desensitized to the medication or treatment.
So I hope to do a lot of whining and to give lots of hugs and support to all of us who suffer with this disease.
Thanks for being here. I've really had lift in attitude since I came back to the IC Network, which was about a month ago. You know, you think you can do it alone, but you can't. And your family and friends just get sick of hearing about it.
With blessings and encouragement,
Sesheta :hi: ;) :hi:
"Kind words can be short and easy -- their echo infinite" -- Mother Teresa.
I've retired and am on permament disability because of my IC, so now I have the time to participate in the site. Before, I was always too busy with work and family to participate very much. I am soooooooooo impressed with what Jill has done with this site.
Anyway, I'm still struggling with IC. I too had a total hysterectomy in 1993 because of unexplained pelvic pain and had corrective surgery on my bladder and uretha at the same time. And guess what. I still had and have the same pain. Grrrrrrrrrrr!! I feel now that my surgery wasn't necessary, but oh well -- can't change that now.
I have really struggled with this disease because I live in a very, very isolated part of California. I know it's hard to imagine a spot in California being isolated, but it is. I'm in Bishop, CA and Reno NV is 200 miles north of us and Los Angeles CA is 300 miles south of us. My gyn-urologist is in Long Beach CA. She's awesome. But I can't get down to see her very often because it's a 5 hour drive. I can't even get instillations done here any more. My regular gynecologist did them at first, but then didn't want to do them any more. My family doctor won't do them either. I've been offered many times to do them myself, but I am not steady enough to be able to do it.
In December of 2002, I had double knee replacement surgery because of severe osteo-arthirits. Talk about a severe flare!! After the surgery, I was in the hospital for 2 weeks because I became anemic and lost a lot of blood. But all the meds and stuff gave me a severe flare. It took about a year to simmer down, but I'm in a bad time right now again. My bladder spasms and contracts so much that when I take a bath, it causes waves in the bathwater. Ouch!! and Ouch!!
So, for now, I'm using a Durasgeic Patch for pain, Vioxx and Ditropan XL for spasms, IC diet, trying some new supplements I found on this site, and plenty of rest. I just can't do what I used to do, which is very, very hard for me. I've led a very active life, and this is the pits. As far as treatment goes, you name it -- I've tried it. Sometimes I get relief for awhile, but then I get desensitized to the medication or treatment.
So I hope to do a lot of whining and to give lots of hugs and support to all of us who suffer with this disease.
Thanks for being here. I've really had lift in attitude since I came back to the IC Network, which was about a month ago. You know, you think you can do it alone, but you can't. And your family and friends just get sick of hearing about it.
With blessings and encouragement,
Sesheta :hi: ;) :hi:
"Kind words can be short and easy -- their echo infinite" -- Mother Teresa.