Interstitial Cystitis

[sadone]

I got really sick in April of this year and eversince then my life became a living nightmare.
I am married with three kids and a dog and work full time in busy office.
Well at this point in my life I am less than half of a functioning human being!
For someone who was a high achiever and usually a supermom and superwoman, well that all went down the toilet.
I had a cysto done in July and doctor diagnosed me with IC I started taking Vesicare and Elmiron.
Now, after many months my life has gone downhill in so many ways!
My work/career is pretty much over.........have to fight for my sick time and they just don't seem to care. They now see me as a liability and I feel it!
My husband, thank God is a wonderful man who helps out as much as he physically can after work.
My mom comes over to help with the household stuff.
I am visiting doctors all the time and telling them my story.........I am always in pain.....lower back, right side, right leg, right knee, and abdominal pressure all the time, not to mention feeling tired all the time!
I am not myself, do not want to see people, ashamed of my swollen stomach!
I am always trying to justify my pain to people and feel very depressed.
I am grieving the loss of who I used to be and all the things I used to do so well.
I am struggling to get back to work full time and cannot do it. I am up 3 or more times a night to go urinate and then wake up with puffy eyes, and swollen face.
I need to know if I am going crazy and if my life will ever have some normalcy again?
I think I need to take some time off to get a grip on this drastic change in living.
Please let me know if it is common with people with IC to struggle to work again at their job outside of the home?
Thanks for listening.........having a bad day.
Sad one

[UroDoc]

Some people do end up being disabled by IC, Keep trying, good luck

[bucky]

you need to go out on short term disability--talk to your dr---that is what that is for.remember jobs love you when your well--get sick, whole different ballgame. good luck

[karajo07]

Hello, my name is Kara and I am 23 and live in Oklahoma.I am so happy to finally hear someone that has IC like me and is feeling tired and depressed alot. I have struggled with IC for 2 years now. And no medicine or treatment has been able to give me relief. It is really great that you have a supportive husband, because this is a dabilitating decease and it can destroy relationships. How long have you been dealing with IC? I would love to talk to you about IC. I think that people who have IC need to talk to others who have it as well. Because you just won't understand how bad it hurts until you have it.

[karen10]

Yes unfortunately this can be the story for some people's lives, BUT don't give up hope, just as it got worse for you in a relatively short time, so it can also get better. I've seen it happen many times, as I work with people with chronic illness. The reality is that sometimes you have to take a break to heal and to get a perspective on your life. There is a great study on the strong correlation between physical health and emotional health. It's called the ACE study, I would recommend you look it up. It has helped me understand this in terms of my life and chronic conditions! Then try using some natural supplements to heal naturally. They really work! Everytime I have had a new condition come up in my life (IC is my third), I end up going to all natural, take better care of myself, resting, decrease stress, improve eating, etc and it always takes care of it. I'm now 98% symptom-free. I wish you well!

[llthomas47]

What natural substances do you take?

[karen10]

I take desert harvest aloe vera capsules designed specifically for IC. I also take a formula of glucosamine, chondroitin, and quercetin, (I personally take cystoprotek which has all these ingredients) all found to be extremely helpful in many for treating IC symptoms. I also take a probiotic, to help fight off yeast which can be a bladder irritant, and an enzyme to help with good digestion. I make sure I follow the diet very carefully as this made a big difference initially.

[sadone]

Thanks for the info.
At this point, fighting for my disability payments through my workplace insurance is causing me stress and probably the cause of my consistent pain.
I will look into the info you sent me.
I wonder how many people have to give up working because of this condition!
Bye for now
Sadone

[karen10]

Sadone,
The stats say 63% of people with IC cannot work fulltime. BUT this was based on the more classic symptoms of IC, where people are considered to have "end-stage" IC. It was diagnosed much later (well many people still are today as well), and so had less chance to start treatments that help support he lining of the bladder. I have a wellness center offering counseling and education for people with IC, so I continue to do lots of research!

[llthomas47]

Does IC get worse in time? When you say starting treatments, what exactly do you mean? I started Elmiron last week. I also use Prelief and the Azo tablets seem to work some. Are there other treatments? Thanks for doing the reseach and sharing what you find out.