Denial...

[Jinny Jean]

So here I am again....with a week of symptoms and still no answers... I hate that I have to be my own doctor and that no one can tell me whats going on!!! I just had three weeks of being normal, and now I feel the same as before For so long I have been in denial about actually having IC. I try and wish it away.. like everyone Im sure...I just want to know that it IS posible to live normally... that this wont rule my life forever if I can just get a handle on it...Elmiron seems to be helping. I have been on it for 1.5 months and I am pretty sure that the last three weeks of goodness were because of Elmiron and diet as well. I clearly was doing something right! Right now I am peeing every 20 min and am comepletley miserable.

I looked up ordering cystoprotek today ...apperantly you have to order it from Algonot online to get it shipped international (I live in Canada)... I think I will give this and elmiron a try and see how they both work. I just started back on the anti candida diet tonight as well, and have a diary about how I feel.. Im hoping that this also helps, as it did in the beginning before I started only the IC diet. I hate feeling sorry for myself... but some days I just feel so low, especially after a period of time when I have felt good. Anyone else still in denial... Guess im just starting to realize that I might only have myself when looking for answers about my bladder... and it feels really lonely...

[nanawaggs]

Oh, my goodness, Jinny Jean ~ Denial has so been a part of my thought process these last 2 years. I know from my doctor's compassion in his face when he reminds me of the relentlessness of this crazy disease that it's real, but oh how that denial creeps into the picture so often. How can I, a normally healthy person with no frequent visits to the doctor other than for an occasional sinus problem be dealing with this horrible menace???? I've always considered myself "healthy" so what's with this thing at this time of my life (I'm 61). It's so bazaar to have such an unpredictable illness. When I begin to feel a little better, oh how easy it is to convince myself that I can't possible be like all the others here on the site. So, yes, I too, battle with the denial, knowing it would be so much easier to just accept the fact that I DO have IC....something so difficult to believe.

You ended your post with the "loneliness" that you're feeling. You're definitely at the right place to receive understanding, sharing, caring, advice and such compassion from the many affected by IC. This is such a wonderful site to come to whether you're physically or emotionally broken. There is usually always someone who has walked or is walking in your shoes.

May you find the right treatment to lead you back to a somewhat normal life....I do have hope it can be done. I've worked at it for almost 2 years, have had times of feeling so much better and that's the time that denial hits.

Blessings and remember there are many of us here who share your frustrations.

[ICNDonna]

I hope this flare passes quickly. Sometimes IC can flare for what seems like no reason at all. It's good that the elmiron is helping.

Warm hugs,
Donna

[Jinny Jean]

Thank you guys for replying and your support It made me cry this morning!.. in a good way I suppose. Like everyone else, trying is trial and error..and right at this point I am desperate to try anything to feel better. Get this.... Yesterday I went to a health food store, and had just asked hey, do you have anything that might help bladder irritation. WELL I guess that was my first mistake, because BY NOW I know what they have in health food stores, and it is all the same... It is all the same section that they go to... the "Uvi Ursi" and D Mannose section..... the Bladder infection section... in which we DO not have... hahah.Anyways this particular lady was like yes I have something for you! (of course you do)....."ill give you some salts"... I was unsure, but since I had never heard of this before and she claimed it helped HER with bladder irritation, I figured I had nothing to lose...(except my mind right?) lol. I admit that my desperation took over, and before I realized it (and before I read the LABLE) I had taken about 16 tablets of POTASSIUM CHLORIDE. Good lord. You can guess how much I suffered last night..

I know that this is probably a set back.. started up again last week... as I was eating everything and anything when I was feeling good the last three weeks... I suppose it may have caught up to me? haha..... thats not funny though.... It "came back" last Friday an hour after I was really stressed about finding a job, and wham. Bladder was upset too.... Crazy how stress affects us...I am so grateful for this site and the compassion and understanding that can be found here. Even though I do feel alone, I know that it is true I can come here for help and support... I have for the mot part I think figured out what works for me... eating the diet and elmiron...but yeah I guess sometimes it can flare for no reason too... Hopfully I will be able to over come this denial thing... that would be ideal....

I have started to drink these smoothie things... which may seem weired.... haha this mornings constists of: Mashed potatoes, carrots, coconut milk, celery, spinach, and a pear mmmmm

[Linda May]

I wish I can wave a magic wand and make ic go away for everyone. I am not in denial I seen my bladder pics and it looks really bad.

[nanawaggs]

Hi, again, Jinny Jean ~ Yes, feeling better and going off the deep end of enjoying all the foods we can't eat I do believe will catch up with us and give us a good kick. It sure sounds like you know how to keep things at bay but I totally understand the denial.

Take care.....You're never alone.

[Jinny Jean]

Yes I do think that it caught up with me...I have started the anti candida diet again, this time im gonna stick to it for a long time hopefully..... I have been feeling a tad better than when I first posted...I find that eating pears every few hours helps calm things down. Yesterday was an improvment and I was able to work in the garden all day.

[nanawaggs]

That's wonderful to work in the garden. I'm planning on helping my hubby next week. I've really slacked off and he could sure use the help...any those home grown veggies are so welcomed.

I can eat pears and I try to have them in the house, I should try eating them more often. Do you eat fresh or canned or ??

Have another great day!

[Jinny Jean]

I eat fresh ones Oh yeah, another thing that helps calm things down I discovered is coconut milk with a pear and spinach blended together. I add carrots, and whatever other green leafy veggie I can find too Sometimes flax powder (for constipation). Not only is all of this anti candida, but its alkanalizing too This seems to really help. Just had one this morning and I feel good! Almond milk (without sugar) I find to be really soothing as well... If anything this whole scenario has taught me to take care of my body!

[ginaaa22]

I also went through denial when I first got diagnosed. It never sank in that IC is a chronic disease. It took me at least a year to realize that it requires major life changes like diet, exercise modification, not drinking pop. It takes time but you will get there. Hope you start to feel better.

[Jinny Jean]

Thanks I have found a few things that work.... and I just had a really good month actually... until it flared up again. Gonna stick with the anti candida diet, as I am pretty sure it all has something to do with yeast in my case. ....Just wanna feel normal.

[OllieR]

Hey - just wanted to say I happened to open this thread and saw your recipe for a smoothie. Thanks for sharing that. I heard coconut milk was supposed to be "healing" so I bought some but did not like it plain and thought I should find a recipe for some things I can mix it with. And I understand being in denial, but I also must say I seem happier after I fully accepted it and stopped fighting it.

[Jinny Jean]

Your welcome lol My parents look at me like I am nuts when I make my smoothies in the morning... haha sometimes they are full of all weired veggies and such. This morning I made one out of salad greens,so spinache, romane etc, cooked carrots, a pear 2 tbs of flax powder, 3 stocks of celery and coconut milk. Tommorow my smoothie will consist of: ACTUAL coconut meat and milk from a coconut I cracked open today, 2 acorn squash cooked, handful of carrots cooked, salad greens, flax powder and 3 stocks of celery. I just fond it to be a really good way of getting lots of veggies! I was also following a lady on U tub.e Her screen name is go4dicipline (sp).. anyways she has IC and has manged to "heal" herself with going raw, and drinking raw fruit and veggie smoothies for breakfast, lunch and dinner. I found her to be very calming. She gave me hope. I ussually make my smoothies and have them for breakfast and lunch, but eat a full meal at dinner (following the anti candida diet).

[flowerangela]

jinny i was and have been in denial for awhile now...i so can relate to your post.please pm me and we should exchange numbers or facebook.

[allisun13]

Hey! Thank you sooo much for your post! I had done the anti candida diet and also limited oxolates and tweaked the ic diet down to a very small amount of foods that didn't cause me bad symptoms. After a couple of weeks of that and taking a fourth of an oxybutinin every few hours as needed I was doing so good. It hadn't gone away completely but I was not miserable for the first time in months. So I started adding more and more back into my diet thinking I could just take the oxybutinin in a minimal dose (hardly any side effects this way) and be fine. I was so happy because I socially, emotionally and physically started to get my life back (as it was before ic). Then slowly but surely I guess the inflamation ect. was building back up. I did not realize it - I think b/c the medication masked it. All of a sudden I am exactly where you were at when you initially made this post. The past few days I've been so disappointed and so on edge b/c the symptoms are so miserable. Reading this helped me accept that I too have to go back to the life style change if I want to get back to feeling better. It's disappointing to say the least. I hate not being able to eat or drink what I want to. Socially it effects me the most but also at the ripe old age of 34-food and beverages are the main ccrutches I have and enjoy (other than my family and friends). I only weight 118 but food and drinks really are such a joy in life to me. Unfortunately pears give me a really hard time. So does almond milk. I think my problem is my list of foods that sre safe is so short and so bland that I do okay for a short while then I do't stick with it. I hope you are feeling better now. Thank you again so much for posting. It's really help me put things back into perspective when I was feeling so lost and confused.