CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 Also, call your local hospitals and see if there is a support group. This helped my mom some. Although one that we went to, wasnt alot of help, but then we found another one that was great. I actually got my mom doing tai chi as one of the members in the group taught a tai chi class specifically for those with fibromyalgia. See if there is any kind of support group. Even if it's just for general chronic illness. If IC is rare, you may not find one specifically for that, but the group do help and they may introduce you to other opportunities to meet people and feel social, like a real person again. this is what my mom says...she likes to feel like a real person again. I will ask my Dr. when I see him on Monday. I am going for an Interstim Trial. It's where they put a temporary pace maker in your back to see if it will help control the overactiveness of the bladder. If it is successful, I will have surgery and have a permenent one installed. I am keeping my fingers crossed. Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 No she doesn't but the treatments she gets are amazing. Depending on the treatment she gets both acupuncture and sometimes cupping for negative pressure massage. Our acupuncturist has treated number of patients the last 20 years including animals. She once saved a dying horse that was about to be put down but knowing that the anatomy of a horse was similar to humans she tried acupuncture on her and to this day after 15 years the horse is alive and well very encouraging.....THANK YOU! Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 link removed Looks like you might find some good info here. Thanks MG...I'm gonna look this up. Link to comment
tiredofvampires Posted November 11, 2009 Share Posted November 11, 2009 I did some on line reading, and the suicide rate for woman with this condition is somewhere around 50%. That scared the **** out of me. Don't ever do it TOV...I know I won't...even on my worst day, I still have to have Faith. Yes, it's up there. It's soul-eating, life blackening...people just don't realize how high that number is, and have no idea about it at all...research is not fond of disorders that mainly affect women's quality of life but have little to offer in the way of meds, and it's not considered "life threatening." HA -- this IS life-threatening. Just in a different sense of the word. But I have made a vow not to do it. I waver sometimes in my head, on my worst days...but then I remind myself why I don't, and why I can't. It's very hard. I still have faith, too. I'm so glad you won't either...it brings you very close to the edge, but I'm so happy to hear you say that, especially after your suicide thread recently (which I saw later) We are going to keep hanging in there. It's about transcending all this to see what life is, besides this. And there is a lot to that. Outside of pain....life is full of beauty and meaning. I can't let this take everything from me, and neither can you. Link to comment
metrogirl Posted November 11, 2009 Share Posted November 11, 2009 ^^ Keeping both of you gals in my thoughts and sending positive healthy vibes to both of you as well. Stay strong my sisters..... Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 Great post TOV...you said it all. We must never EVER quit, as hard as that seems at times...... Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 ^^ Keeping both of you gals in my thoughts and sending positive healthy vibes to both of you as well. Stay strong my sisters..... Thanks MG..... Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 My insurance company just called...the DENIED my Interstim trial for monday, which is supposed to be the best treatment for this condition. I am shattered......... Link to comment
metrogirl Posted November 11, 2009 Share Posted November 11, 2009 My insurance company just called...the DENIED my Interstim trial for monday, which is supposed to be the best treatment for this condition. I am shattered......... Did they say why they denied the claim? Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 Did they say why they denied the claim? Yes....some ass hole Medical Director who sits behind a desk and has NEVER examine me determined that it was "medically unnecessary"... Link to comment
metrogirl Posted November 11, 2009 Share Posted November 11, 2009 Yes....some ass hole Medical Director who sits behind a desk and has NEVER examine me determined that it was "medically unnecessary"... So peeing up 50 times a day is okay in his eyes? Total horsepoo...... Don't give up. If you have to bombard those bastards with endless paperwork and claims you keep doing it until some stuffy suit guy decides that it might actually be a good idea. Oh next thought......Have you researched to see if there are any clinical trials in your area that you might be able to participate in? Link to comment
Fallen_Ally Posted November 11, 2009 Share Posted November 11, 2009 Hi there, I'm so sorry to hear you have IC. i also am dealing with it, and it is crippling. the frequency is a complete nightmare and my doctors are at a loss with what to do with me. I've turned into a shadow of my former self and i'm sure my friends and family are sick of hearing about it. I am on daily medication at the moment, i dread to think what would happen without it. my thoughts are with you x Link to comment
anggrace Posted November 11, 2009 Share Posted November 11, 2009 Have you looked into acupuncture? There are a lot of people who have IC that acupuncture has reduced the symptoms tremendously. Like with anything the results will differ but something I highly encourage. Im very sorry tio hear about your illness. I secong the idea of accupuncture. My whole family has had great results concerning other troubles. Link to comment
Jeen Posted November 11, 2009 Share Posted November 11, 2009 I just want to give you a hug! No links tonight! Just a big old hug. Link to comment
Perfect Dark Posted November 11, 2009 Share Posted November 11, 2009 (hugs) I hope you get some treatment for this. x Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 Hi there, I'm so sorry to hear you have IC. i also am dealing with it, and it is crippling. the frequency is a complete nightmare and my doctors are at a loss with what to do with me. I've turned into a shadow of my former self and i'm sure my friends and family are sick of hearing about it. I am on daily medication at the moment, i dread to think what would happen without it. my thoughts are with you x Thank you for responding...what type of treatment are you on? I am so sorry you also suffer from this...... Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 So peeing up 50 times a day is okay in his eyes? Total horsepoo...... Don't give up. If you have to bombard those bastards with endless paperwork and claims you keep doing it until some stuffy suit guy decides that it might actually be a good idea. Oh next thought......Have you researched to see if there are any clinical trials in your area that you might be able to participate in? There are no trials in my area....I have filed an appeal that will take up to 30 days...I was supposed to have the procedure done this Monday. Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 Im very sorry tio hear about your illness. I secong the idea of accupuncture. My whole family has had great results concerning other troubles. Thanks...as I said, I plan to look into it. I'd move Heaven and Earth to be rid of this..... Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 I just want to give you a hug! No links tonight! Just a big old hug. Hugs back at you Jeen...you have been a wonderful supporter. Link to comment
CallingAllAngels Posted November 11, 2009 Author Share Posted November 11, 2009 (hugs) I hope you get some treatment for this. x Thanks Wila. I HAVE to get relief...it's just a complete NIGHTMARE. Everyday is like that movie "Groundhog's Day" but without the humor... BTW...nice to see you still have my quote in your siggy Link to comment
Ellie2006 Posted November 12, 2009 Share Posted November 12, 2009 Allie, sorry to hear of your condition but I am glad to see you back ... Sending best wishes and positive energy your way ... Link to comment
jengh Posted November 12, 2009 Share Posted November 12, 2009 Wish it was under better circumstances, but it's so nice to see you back. I'm so sorry you've been diagnosed with a chronic illness. I've been diagnosed with three, I understand how incapacitating they can be, how all you want to do is just stay in bed all day. I think the acupuncture is a fantastic idea and something I should look into myself. I hope the meds start to offer you some sort of relief soon. Link to comment
celiaroae100 Posted November 12, 2009 Share Posted November 12, 2009 i'm so sorry you're suffering with this, it must be awful. I know lots of people that have used acupuncture for different things and has always helped in varying degrees, well worth a try xx Link to comment
CallingAllAngels Posted November 12, 2009 Author Share Posted November 12, 2009 Allie, sorry to hear of your condition but I am glad to see you back ... Sending best wishes and positive energy your way ... Thanks Ellie....much appreciated. Link to comment
CallingAllAngels Posted November 12, 2009 Author Share Posted November 12, 2009 Wish it was under better circumstances, but it's so nice to see you back. I'm so sorry you've been diagnosed with a chronic illness. I've been diagnosed with three, I understand how incapacitating they can be, how all you want to do is just stay in bed all day. I think the acupuncture is a fantastic idea and something I should look into myself. I hope the meds start to offer you some sort of relief soon. Oh Jenny....I am so sorry hon....I didn't know you had chronic illnesses. And you always seem so upbeat. It's so hard for me to get out of bed these days...if I didn't have to pee, I would just remain there. Link to comment
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