Living with a Chronic, incurable condition.

Hello to all my friends...old and new. I have been away for a while, but I think it's time to come back. I am suffering and hurting badly. I was diagnosed with Interstitial Cystitis, which causes me to urinate 30-50 times a day and night. (TMI, I know). There is NO CURE, only treatments, which are not very successful. The current medication I am on, Emril, takes 3-6 months to kick in to see if it is even helpful.

Does ANYONE know anything about this conditon? Does anyone here live with a chronic illness? I guess I should have counted my blessings when I had them.

Your health IS your wealth.

Looking forward to responses...

Allie

Good to see you back my friend. I was actually looking up your condition when you told me about it the other day.

link removed

I can't imagine how uncomfortable you are at any given time. I have kept you in my prayers though.

Have you tried any alternative methods to see if it helps?

Oh Allie...I am so sorry. It's good to see you back...sounds like you could use a shoulder and where better than here, right?

I don't know much about Interstitial Cystitis, but I have heard it is miserable. I wish there was something more I could offer you, but for now...link removed

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.

Good to see you back my friend. I was actually looking up your condition when you told me about it the other day.

 

link removed

 

I can't imagine how uncomfortable you are at any given time. I have kept you in my prayers though.

 

Have you tried any alternative methods to see if it helps?

Thanks MG. It truly is a living hell. I am still trying to wrap my brain around it...

Hi hun,

I'm soo sorry about this, and can't offer any help. But we are your shoulders, your strength, when you need us!

Love ya, girl,

KG

Oh Allie...I am so sorry. It's good to see you back...sounds like you could use a shoulder and where better than here, right?

 

I don't know much about Interstitial Cystitis, but I have heard it is miserable. I wish there was something more I could offer you, but for now...link removed

Thank you for the welcome back and your words of encouragement......

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.

No, I have not, but I sure will. Thanks Sidehop!

Hi hun,

I'm soo sorry about this, and can't offer any help. But we are your shoulders, your strength, when you need us!

Love ya, girl,

KG

Thanks KG....you're the best.....

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.

That's a really good idea sidehop. I hadn't even thought about that I'm a huge fan of acupunture.

i'm sorry to hear about this. i wish you the best ((hugs))

Hi Allie. Yes, I live with a chronic health condition too, and there is no cure. It's not life-threatening and I can still function for the most part on a daily basis, but it really interferes with the QUALITY of my life. I've had it since I was very young and sometimes I get very discouraged living with it.

I don't know much about your condition, but it sounds like it's not much fun. My condition makes me feel a bit isolated sometimes too, because I look perfectly healthy, yet people don't know that I am struggling each day. My condition is also rare so when I tell people they have absolutely no idea what it is, and that just adds to my feeling of being the 'only one' who has to live with it. I understand how you feel.

That's a really good idea sidehop. I hadn't even thought about that I'm a huge fan of acupunture.

I will definitely look into this...anything to alleviate the symptoms.

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.

I agree with this. I've been looking into this a little bit before I replied to your pm, but yes....from what I've browsed through acupuncture does seem to be a positive treatment option.

What treatments have you tried so far?

Hey honey we are all here for you!

I agree with this. I've been looking into this a little bit before I replied to your pm, but yes....from what I've browsed through acupuncture does seem to be a positive treatment option.

Acupuncture does a ton of good for many issues. Thumbs up for that.

Hi Allie. Yes, I live with a chronic health condition too, and there is no cure. It's not life-threatening and I can still function for the most part on a daily basis, but it really interferes with the QUALITY of my life. I've had it since I was very young and sometimes I get very discouraged living with it.

I don't know much about your condition, but it sounds like it's not much fun. My condition makes me feel a bit isolated sometimes too, because I look perfectly healthy, yet people don't know that I am struggling each day. My condition is also rare so when I tell people they have absolutely no idea what it is, and that just adds to my feeling of being the 'only one' who has to live with it. I understand how you feel.

Thank you for responding to me...it's nice to know I AM not alone. I'm so sorry for your suffering. I never heard of IC before I was diagnosed, and I too look "normal" on the outside....Hugs to you.

I agree with this. I've been looking into this a little bit before I replied to your pm, but yes....from what I've browsed through acupuncture does seem to be a positive treatment option.

 

What treatments have you tried so far?

So far I have just tried the meds the Dr. has given me and changing my diet. I have researched this on line and I did not see acupuncture anywhere. But I'd definitely do it.......

Hey honey we are all here for you!

Thanks Victoria......

i'm sorry to hear about this. i wish you the best ((hugs))

Thank you..............

Have they done any bladder instillations?

Are you doing any pelvic floor exercises?

So far I have just tried the meds the Dr. has given me and changing my diet. I have researched this on line and I did not see acupuncture anywhere. But I'd definitely do it.......

A lot of insurance companies don't cover acupuncture (some do as long as it's needed for medical reasons approved by your doctor) but honestly for the money it's worth every penny. My wife sees one on a regular basis and though we live a very healthy lifestyle from eating and going for walks and being active, I've noticed a tremendous difference with her energy after giving birth to our daughter. She has spine/back issues as well as other symptoms that she gets treated once a week.

I would call around to see if the acupuncturist knows how to treat your IC. I'm sure most would know but you also don't want a practitioner that's not experienced in the field either. I hope you feel better and hopefully it will make a difference

I'm sorry Allie, I'm gonna look this up.

Allie I'm so sorry to hear you are going through this

Unfortunately I don't know much about your condition. I DO know a fair amount about being diagnosed with and living with a chronic incurable condition though.

I have temporal lobe epilepsy myself. Although it is a different condition, when I was first diagnosed, I had a very hard time. I was put on more medications than I can remember offhand as they tried to figure out what was wrong with me (TLE is often misdiagnosed). As they tried to get my prescription and dosage right, I kept having seizures, headaches.... I was depressed, miserable. My relationship suffered big time. My schoolwork went down the tubes. My driver's license was taken away twice.

But the upside? I'm a few years in now and I know a lot about my condition. I'm also extremely lucky in my case, in that it is mild in me and able to be controlled fairly well with medication which is now stable and I'm adjusted to (well... pretty well... side effects are just something we get used to...).

I don't know what sort of luck you will have with treatment. Chances are, you will see ups AND downs. The trick is to stay positive during it all and communicate with your doctor.

It isn't easy... but we learn how to play the hand we are dealt, and I'm sure you'll find a way to feel better in time.

*hugs*

My mom suffers with (overlook my spelling on these...I cant even pronounce half of them) Fibromyalgia, Polymyalgia rhumatica, osteoarthritis, rhumathoid arthritis, coronary artery disease, her liver, kidneys, eyes and heart are all suffering and starting to not function well due to all the medications that she's been on for 15 years. She suffers horrible bouts of depression because of the chronic illnesses.

Right now she is in the middle of a flare up and she can barely walk. Usually she uses a cane, but when it flares up, she has a hard time moving. So, when everything calms down and she isnt in a "flare up" she tries to do all that she can like visiting with her friends, spending time with me and my baby (her new grandson!!) and taking care of her cats.

The depression really hit her bad at first and still does at times because she is so limited in what her body will let her do. She used to dance, walk, and just be able to move freely. So losing so much of her life has made her miserable. She saw a counselor for years. In fact I think over the years she has seen a counselor 3 or 4 times to help deal with the overwheling emotions and suicidal thoughts.

I guess my advice would be to keep tabs on depression and dont let it get ahead of you. And a counselor is a good idea to help you learn to deal with the emotions associated with a chronic illness.

I'm sorry. good luck and big hugs to you.