I am wondering if there is anyone here who has the dreaded bladder disease known as interstitial cystitis (ic)
This disease has completely changed my life.
Because of the ic I am unable to go most places that others take for granted. My diet is crazy...vegetables for the most part are ok as long as I am not allergic. No food colorings, preservatives, nitrates, vinegar, mustard, tomatoes, oranges, lemons...anything that makes the body more acidic. Best if food is organic and not from a box or can.
I am trying to decide if this program can help me or not. I find that once in a great while when I have an afternoon or a morning that I only have to go to the bathroom every hour and no bladder pressure in between those times...those times are great...but not enough of those days. Thats when I am in a good mood, etc. However, the times when I have the bladder symptoms (which is quite a bit of the time) I am just a mess...physically and emotionally. Everything centers around this disease. It is very difficult to be upbeat when you are in pain.
I also have irritable bowel, however, the ic is my main concern right now.
I am not able to take vitamin c or the B's and a few other supplements because they cause the bladder to burn and this is frightening too.

Ester

Ester,

I do feel for you! I know it is difficult to deal with a chronic illness on a daily basis. Although I do not experience the exact same routine as you, I do have a daily grind to work with.

I take prednisone, which gave me a fat moon face, I am always hungry (which I drink ALOT of water to curb), I have developed weird period cycles, hot flash temperature type things, headaches, joint aches. Some days I just feel plain tired!

I have found that talking with my doctor helps greatly! I am weaning down at 5 mg every 2 weeks instead of the 10mg which was making me very sick.

I also eat very much the same as you. Yes it is NOT fun, but it is a very healthy way to live. My doctor pointed out that my ACE serum level was 95 in May and AFTER I changed my entire diet and my level last week was 19!!! My periodontal disease has much improved, I am feeling better because I am eating better. I follow the diet recommendations of Dr. Andrew Weil. There are so many things to avoid , you are right. Eating this way is very different and a hassle as it is time consuming. It was so much easier to pop something from the freezer into the oven , now that is not the norm. I do have a treat meal here and there. I had fries last week, but I did not have them for 3-4 weeks prior to that. I do not eat at any of the fast food burger places. Everyday is not perfect as no one is the height of glowing energy amd smiles 100% of the time, that is just OK with me.

I am limited to where I go. I cannot be exposed to smoke, fumes, chemicals; I have to purchase non-toxic household cleaners, cannot mow the lawn anymore or be out near where it is being mowed. If there are fumes, I need to get up and get out. I cannot use many chemicals, paints, stains, cleaners. I also cannot let the dust settle in my house as it will make it difficult for me to breathe. ANd since I do not have 100% of lung function, it get real interesting to breathe in very humid weather.

I know it stinks to have a chronic issue, but there are ways you can help yourself. The program has helped me to keep a more positive and upbeat outlook on everything. I also realize that feeling defeated and down is not productive. When I was first diagnosed, I needed to mourn the "old" carefree, worry-free, disease free me, to a me that I have to be cautious with. But I an tell you, the more time that has passed, I have a new, improved attitude about this. I am doing everything I can to protect myself, but live my life to the very fullest as much as I can everyday. I know I have today, so I am enjoying as much as I can. I am not sure what tomorrow will bring, but I cannot think about that as I have to live the moment I am currently in, otherwise I will miss it. I enjoy what I am blessed with, I really enjoy the simple things.

The program has helped tremendously. I feel I have learned and used the skills in the program effectively. I know it can be difficult to be upbeat when you feel beaten, but this is really all a state of mind. Positive thoughts bring positive feelings. A positive attitude will get you to many places.

Take care!
LizB

Thank you LizB.
I know that you are right.
Thanks for taking the time to answer my message.

Gods blessings to you,
Ester

I have this too. I know how debilitating it can be. I am up tonight because I had my treatment today. Have you had DMSO put in your bladder by urologist. I have to go once a week for 5 when I am at my worst. Also there is a new drug Elmeron that heals that lining of the bladder. Not a quick fix takes a year for total result. I cant take because of liver changes. I was diagnosed 16 years ago. Not an easy thing to deal with. Many sleepless nights with frequency. I do notice that it gets worse when I am stressed. So I think I will gain something from the program. I have been able not to dwell to much on the symptoms. It won't go away but maybe I'll get better with dealing with it. I have IBS too and when one is bad the other is bad. I can't go anywhere without the dark cloud over my head so to speak. It sounds like your having a rough time. I have had many health battles and I know what it can do to your life or lack of. I just wanted you to know that I know what your going through. I hope you have a good understanding doctor. With this new drug out "Elmeron" maybe something more will help us soon. People don't understand this illness. If you can't see your pain they don't know how real it is. Take care of yourself. Be thinking of you.

Ester,
It is a long time since you wrote, but I have just joined the program.
I have questionable IC, mainly chronic urethritis, or pelvic floor dys. The names keep changing for this horrid disease.
I also have Menieres syndrome.
IBS, and the rest of the nerve related, anxiety related diseases, which cause more anxiety and more depression.

I do know how you feel. Yes, so much does center around the illnesses.
This isn't addressed in the program that I see.
I wish it was.

The anxiety that we chronic suffers feel, is real, and also overblown, it just depends on the stress that hits as well as the disease.
I find the more anxious I am the worse my MM is, and most times the bladder stuff too.
I don't have answers yet, and probably won't have, but I am hoping that as I get better with my anxiety that I will begin to be able to accept the lousy chronic stuff I feel, and not keep harping back on what I used to do. I want to learn what I can do NOW, and what I can't do when I feel bad physically, but also be able to accept the problem that I can't do what I want at that time. I will be able to at another time.

Does this sound at all nutty to you?
I have had IBS all my life, and it has limited my doing a lot of things also.

I hope you find that you might find some of the protcols to help your IC. I also hope you have a support group on line, or have done more research into the disease. Altho, it is confusing at times to me.
I know there are many drugs I can not take because of the IC, MM, and IBS........
It sux. It is depressing esp when I flare.

I hope you have gotten some help from some of the drugs for IC, or at least gotten into a pain clinic so they can help with the pain, so you can do other things in your life...after the depression is wanning.

When will I Learn???
I use that as my name, because it seems like I KNOW what to do, but can't seem to apply it to myself.

(miki)

I have IC. I got diagnosed in 1997. I took Elavil daily, which was a lifesaver. It worked for my pain and frequency. I also took Vicodin for break through pain. Luckily I am in remission right now. I had a baby a year ago and while pregnant my IC went away. This happens for about 30 % of IC patients when they get pregnant. Luckily I am still doing good. My Mom had is before she had me and it went into remission when she had me. But then 30 years later it came back.

I think that this program could help alot with dealing with such a horrible illness.