Living with a Chronic, incurable condition.

[metrogirl]

I think you should start checking into that accupuncture........It couldn't hurt just to go with it for a little while to see if you get some relief if only a little.

[CallingAllAngels]

Have you checked around on the acupuncture? I'm so sorry you're going through this, I just know there is still a good chance it could help you aside from conventional methods. I wish you the very best.

 

No, I haven't, but I plan to next week.

[CallingAllAngels]

Please be careful with trial drugs and gizmos. My mom's doctor's almost killed her twice with "a new drug". They even had her on cancer drugs that ate holes in her intestines. None of this helped her, it made her worse and almost killed her. She eventually learned to stay the hell away from anything that is a trial or new gizmo. They usually screwed her up worse.

 

I'm with your mom...I HATE taking new drugs. I should have followed my gut about this Interstim Therapy. The Medtronics Rep was in the room for the procedure, and went over everything I had to go yesterday. Real friendly guy. Said he was going to call me today to see how things were going.

 

I called him first thing this morning to let him know my feet and legs had gone numb and guess what? I NEVER HEARD FROM HIM! "Where oh where did you go?"

 

I believe all these drugs companies and such are in bed with the Dr's.

 

Hope your mom is doing better and I'm sorry that happened to her...

[tinydancer81]

omg allie i just looked that up, its sounds awful, bless you. I really feel for you hun....

 

I cant imagine how frustrated you must feel. Sending good thoughts and prayers your way

[CallingAllAngels]

omg allie i just looked that up, its sounds awful, bless you. I really feel for you hun....

 

I cant imagine how frustrated you must feel. Sending good thoughts and prayers your way

 

Thank you Tiny...each day has been a nightmare. I wouldn't wish this on ANYONE......

[Belgian girl]

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.

 

 

Interesting. Wondering btw if acupuncture is seen as (still) an alternative wayof health care.

[CallingAllAngels]

Interesting. Wondering btw if acupuncture is seen as (still) an alternative wayof health care.

 

I think so...I DOUBT my insurance would even cover it. I think it took an act of Congress for them to cover chiropractic services......

[CallingAllAngels]

I knew it. My immune system is SO SHOT from lack of sleep I know have broncitius which is very close to going to pnemonia. I am on predisone, which makes the small amount of sleep I was getting even less........

[Belgian girl]

Am sry to hear. And can't believe nobody posted in the time I wasn't here.

Take care of yourself and keep in contact.

I have sore lungs (too). Am around my maximum dose of allergy tablets like already a week while I think it's very healthy what I eat and drink, I take extra sleep, take my daily astma medication to prevent (Seretide discus), I shower every day, I go outside every day, I keep everything cleaned and washed and I only did low activity when I was awake. Pfffffff.

[CallingAllAngels]

Am sry to hear. And can't believe nobody posted in the time I wasn't here.

Take care of yourself and keep in contact.

I have sore lungs (too). Am around my maximum dose of allergy tablets like already a week while I think it's very healthy what I eat and drink, I take extra sleep, take my daily astma medication to prevent (Seretide discus), I shower every day, I go outside every day, I keep everything cleaned and washed and I only did low activity when I was awake. Pfffffff.

 

I'm sure people are growing tired of this thread, that's why there are no more responses, but I appreciate yours.

 

My broncitius is NO better, but they were able to rule out pnemonia. I may have to be hospitalized for this just so they can catheterize me at night at give me a sleep aid for sleep, as my breathing is NO BETTER (I am using an inhaler ever 2 hours) and am on the strongest antibiotic they will precribe outside of the Hospital.

 

The problem is, because of my Intererstitial Cystitis, I don't get any sleep. No more than one or two hours a night, and NONE during the day. I can't go more than 50 minutes without urinating, and I usually get the urge to pee evey 15 minutes or so but I fight it because I can't stand going all the time.

 

It's impossible to leave my house....I drive a few miles and then I have to find the nearest public restroom.

 

I just cannot believe there is NO cure and SO FEW treatments for this.

 

I DID ask my Dr. about accupuncture, and she said it is not helpful for IC. (She is a licensed accupunctureist)

 

So I follow along with my diet, which makes no difference, and a medication called Elmiron that takes 6 months to take effect.

 

Thanks again for responding, and I hope you feel better soon.

[bulletproof]

 

I DID ask my Dr. about accupuncture, and she said it is not helpful for IC. (She is a licensed accupunctureist)

 

Licensed or not, that is one person's opinion. Maybe just try the acupuncture, because it's not like it can make things worse. Who knows, maybe it just lowers the stress associated with what you're going through. It just seems worth it to at least try.

 

Hang in there and keep us posted on what's happening.

[CallingAllAngels]

Licensed or not, that is one person's opinion. Maybe just try the acupuncture, because it's not like it can make things worse. Who knows, maybe it just lowers the stress associated with what you're going through. It just seems worth it to at least try.

 

Hang in there and keep us posted on what's happening.

 

I would try ANYTHING to help my symptoms...I have spent HOURS on the Web and there seems to be nothing. Most people's biggest complaint with this is pain. Not for me...it's frequency. Again...I am so sleep deprived I cannot function anymore and am not working. Most woman with this condition are on SSDI, something I NEVER thought I'd be facing. Of course, with the company I work for, I will most likely lose my job before I get a disability retirement, even though I have 23 years of service.

 

Thanks for your post...I think I've given up. I think I just about quit.

[SnowFox]

I just wanted to say I really feel for you. Until someone has had a horrendous health problem totally overtake their life (like yours is doing), they will not understand what this can do to a person.

 

The reality is that your entire life may need to change due to this condition. There are millions of people with all sorts of diseases, conditions, and illnesses which greatly limit their ability to lead a "normal" life. Your instincts will cause you to fight against this tremendously, but you may need to start mentally preparing yourself for what lies ahead.

 

I don't know if you posted about this already, but if you can find a psychologist who specializes in working with people with serious health issues (you may need to search around to find one of these- but they do exist), that may be quite helpful to you. A psychologist like that will have experience with others whose lives are dramatically affected by health problems and it can really help you to cope. Having your life dominated by an illness causes a huge amount of distressing emotions and its important to be able to express these openly to someone who will listen non-judgmentally.

 

Another suggestion I would have is to learn meditation. This will help your mind to relax from the chronic stress you are under living with the pain and intrusion from your symptoms. It is not a "cure" for the illness, but rather, a cure for helping your mind to calm down and this will lead to not being as stressed by your symptoms. Chronic pain and illness is very taxing on the brain and meditation is a way to help reduce the effects of that. I've posted this on other threads, and will do it here, too - link removed.

[CallingAllAngels]

Thank you, and hugs to you. I see a pysch...but I need to see a more understanding one. I also need to get into some therapy.

[CallingAllAngels]

It has been a bad 5 days. The disease progresses as I now have pelvic pain that is equated to labor pains, but since I have no children, I can't make a comparison.

 

I had a "rescue treatment" done on Friday. Since then, I have had nothing but pelvic pain and bladder spasms that are so bad I lay in a fetal position and cry. I called my Dr. this morning to discuss other treatment options, but, after being put on hold, was told he was "unavailable." I don't like him, and I know he doesn't like me, but I am at his MERCY.

 

My depression gets worse by the day...I have suicidal thoughts that scare me...I'll be driving down the road and I'll think "maybe I'll wrap my car around that tree..."

 

The only thing that stops me is my parents...I love them so much I would not want them to bury a child.

 

There has to be a way out of this......why can't I find it? Why can no one help me?

 

Sorry for ranting...I am just at the very end of the line.

[Scorpion Fury]

Can you go to the ER if you're in a lot of pain?

[CallingAllAngels]

Can you go to the ER if you're in a lot of pain?

 

I have Percocet to take for the pain. The problem is, any and all narcotics put me in Urinary Retention. The Percocet puts me in retention, so I am sure if I went to the ER with this kind of pain they would give me morphine...that would put me in retention for sure.

 

I have thought of it...believe me I have. There HAS to be an answer out there...there just has to be. I just can't find it.

[15 Storeys High]

You NEED a different doctor. That much is obvious. Don't settle for the one you have now. There is surely someone out that specialises in your condition......

[Scorpion Fury]

I'm not sure which state you live in, but have you researched doctors who specialize in this? I found this for you link removed

[CallingAllAngels]

You NEED a different doctor. That much is obvious. Don't settle for the one you have now. There is surely someone out that specialises in your condition......

 

I know.....I have thought of that too. But by the time it takes to get a referral and see a new Dr., it will be over a month from now. I am supposed to have an Interstim installed in January...it is like a pace maker for the bladder. It should help with the frequency and the retention, but it doesn't help with the pain. My hope is by having the Interstim installed it will allow me to take my pain medications, and my anti depressant medications without putting me in retention so I can LIVE some what of a normal life.

 

But sometimes I hesitate when I think this man is going to put the Interstim in...there are a lot of adjustments to be made afterwards. He has a horrible bedside manner...no compassion at all. I'm very much intimidated by him.

[CallingAllAngels]

I'm not sure which state you live in, but have you researched doctors who specialize in this? I found this for you link removed

 

Many thanks...I am going to check it out now.

[metrogirl]

I know.....I have thought of that too. But by the time it takes to get a referral and see a new Dr., it will be over a month from now. I am supposed to have an Interstim installed in January...it is like a pace maker for the bladder. It should help with the frequency and the retention, but it doesn't help with the pain. My hope is by having the Interstim installed it will allow me to take my pain medications, and my anti depressant medications without putting me in retention so I can LIVE some what of a normal life.

 

But sometimes I hesitate when I think this man is going to put the Interstim in...there are a lot of adjustments to be made afterwards. He has a horrible bedside manner...no compassion at all. I'm very much intimidated by him.

 

Just having a doctor that you are not comfortable with with cause your anxiety and pain to probably shoot through the roof. No one should stay with their doctor if they aren't happy with them.

[chasey]

**HUGS** I just saw this post and am so sorry you're going through this!!

 

I know how hard it is to have chronic pain, especially when it's something other people can't see, it's like if they can't see it it doesn't exist to them and they think a person is fine. I have osteoarthritis, fibromyalgia, ibs and now getting testing for a blood clotting disorder. The arthritis is the worst. I'm only 36 and have days I can barely move or walk. It really wears a person out!

 

You're in my thoughts!!

[tina-rocks]

Just found this Allie, I am going to keep at in case I find anything else usefull.

 

You are a beautiful person with such a pure heart. I would take this in a heartbeat for you.

 

 

1. Read "Along the Healing Path - Recovering from Interstitial Cystitis"

 

This excellent book, written by Catherine M. Simone, is a must read for anyone with Interstitial Cystitis. I can honestly say, if it weren't for this book I would not be in the place I am today, which is completely symptom-free. Catherine Simone had a very severe case of IC, which she healed using the methods described in her book.

 

"Along The Healing Path" is a holistic perpective of interstitial cystitis with information on various alternative treatments, herbs, and natural products.

[tina-rocks]

Try Serrapeptase Proteolytic Enzymes

 

Serrapeptase is one supplement that is having tremendous results for inflammation and pain in all forms, but particularly for bacterial and non-bacterial cystitis.

 

This product's clinical studies and anecdotal evidence is so promising that we have included it in our support pack, and it is available to purchase separately as well.

 

Serrapeptase digests non-living tissue, blood clots, arterial plaque and inflammation in all forms.

 

Besides reducing inflammation, one of serrapeptase's most profound benefits is reduction of pain - physicians in Europe and Asia are using it as an alternative to saliclates (aspirin), ibuprofen and other NSAIDS.

 

3. Relieve Acute Pain

 

The Emergency Way to Relieving Pain Fast!

 

If you are having a painful flare-up right now try this fast and effective tip:

 

Use Baking Soda

 

Take one half of a teaspoon of baking soda and put it in a full glass of water. Stir, let sit a minute, and then drink it down. You can repeat this up to 4 times a day, not to exceed 2 teaspoons per day.

 

Baking soda is an extremely fast and effective way to alkalize your body. It works very quickly to relieve painful flare-ups. You can use this tip when you are having painful flare-ups, however I would recommend the alkalizing supplements listed below for long term use, since doctors have not studied the long-term effects of consuming baking soda on a daily basis.

 

4. Relieve Your Chronic Pain

 

For the long-term relief of painful flare-ups, you will likely need to take some additional measures. You may find that even when you eat completely "safe" foods, you may still get symptoms of burning and pain. This was also the case with me.

 

Research has shown that inflammatory conditions in the body are often a direct result of a deficiency of essential fatty acids. As a result, I started taking flax seed oil and fish oil capsules everyday.

 

Essential fatty acids are very important because they suppress the cytokines in the body that produce inflammation, especially interleuken-6 (IL-6).

 

You can try either flax or fish oil, but fish oil is recommended since a minority of people are unable to metabolize or break down the flax oil. You can try a fish oil which comes from the entire fish, or cod liver oil which is strictly from the liver. The advantage to cod liver oil is that it also contains vitamin A, which assists in building immunity.

 

 

Arctic® Cod Liver Oil

We sell a cod liver oil called Arctic® Cod Liver Oil that is molecularly distilled and guaranteed free of heavy metals, dioxins, and PCB'S. This is extremely important.

 

Arctic™ Cod Liver Oil surpasses all national and international standards for freshness and purity, and it comes in a great-tasting peach flavor, with no fishy taste or after-taste. It is best to take your fish oil one hour before bedtime, as the omega-3 fatty acids suppress cytokines that disturb sleep.

 

Activated Quercetin™

 

As another direct antidote to the pain of IC, I found that I was able to take a supplement called Activated Quercetin™ by Source Naturals, which is quercetin plus bromelain, an enzyme derived from pineapples.

 

This seemed to help within a few hours, giving me several hours of relief at a time. But I had to keep taking it, because if I didn't the pain would come right back.

 

Activated Quercetin™ is a unique bioflavonoid derived from plant sources.

 

In human cell culture studies, quercetin has been shown to inhibit histamine release.

 

The bromelain enhances the effects of the quercetin, making it more bioavailable. Quercetin by itself without the bromelain is not as effective.

 

Some people find that the only way to relieve their pain is to take pain medication prescribed to them by their doctor. I say if it works for you in the short term, that's great. But these medications do nothing to heal the underlying cause of your condition, so it is best not to rely on them exclusively.