Feeling overwhelmed (A good ol' pity party)

[Sher E]

Well, things have been a rollercoaster since posting here a few weeks back. Although I haven't been officially diagnosed, my symptoms have come and gone for about 2.5 months now.

The Ditropan has worked and my level of pain is manageable for the most part. It is no where near the pain level it was before the Ditropan. Yesterday I felt "normal". No pain, no pressure. Today is a different story as I am tender inside and aware of my bladder. It also becomes agitated when my intestines start to go into spasm mode which I presume is from the Ditropan. I think what has me the most depressed is a) having something that there is no cure for B) Not knowing exactly what I have and how to treat it and C) Not being to eat so many things for fear of having a flare and wondering how am I supposed to go the rest of my life not being able to eat things that are natural and good for you.

Yesterday I had a salad. The ranch dressing was a little spiced up...could that have been the culprit for my soreness today (shrug) I don't know. To think that I may never be able to have a strawberry, an orange juice, an apple, chocolate or so many other things I love is really quite upsetting. I wish I was at the place mentally that a lot of other IC patients are (like ICJILL), but I am so far from there. While my symptoms aren't as severe as some here, I feel that this has been a nightmare to deal with and I am so sad to have to worry about everything I put in my mouth on a daily basis. I wake up everyday wondering if I'll feel good or not. I can't think fast enough on what to order when I am out at a restaurant. I would've never thought that the food I'd taken for granted and enjoyed all my life would cause such misery.

I still don't want to believe that I "could" possibly have IC, but if not IC what else would cause these troubles for this length of time?

I am overwhelmed at my choices of what to eat, what not to eat, what treatments, diagnosis...the whole gambit. I want to cry and scream. I can't imagine this for a lifetime. I just can't. At least not at this point.

I have ordered Gotu Kola and will try that. I will try Prelief. My follow up Uro visit is Monday and we'll discuss Elmiron. But I'm afraid to go on all these medications with out a solid diagnosis. Who else uses Elmiron if not IC patients?

Here's my questions:

Why Evian only?

If the cause of IC is thought to be damage to the bladder walls, could my Laporoscopy from a year ago (to remove endo which grows on my bladder as well) cause IC and yet take that long to develop symptoms?

What made the IC engage? How was I able to eat what ever I wanted 4 months ago and not today? (this is where I fell like pulling my hair out)

I seriously think I need an IC friend to talk to. I felt much comfort after reading Jill's action plan. I never thought about this as a wound. And I am going to try and mend this wound for the next three months as she suggests. Reading here is wonderful, but I do wish there was someone to talk to about this other than my Uro.

Are there support groups state to state?

I'm sorry for the long winded post. I am just so damn hungry! And I want to eat things I never really eat anyway just because I know I can't now!

What to do besides cry about this? That's the million dollar question at the moment.

Thanks for letting me vent.

Sher :rolleyes:

[ICNDonna]

One thing that really helps me is to concentrate on the things I can have, rather than those I can't. It also helps me to think about irritating foods and drinks as allergies. Many people have to avoid some foods due to allergies.

Warm hugs,
Donna

[VickiB]

I felt much the same as you do when my IC journey began. -Had to fight back tears while grocery shopping,...it just seemed so darn unfair!

But after doing an elimination diet, I began to add food & drink back into my diet and have learned that there aren't that many things that trigger a flare for me. And when I want to eat them, Prelief allows me to get away with almost all of them. (And thank God, Prelief is reasonably priced!)

While there are those who only seem to tolerate Evian, many of us find our choices to be wide. I always buy "spring water" and usually choose the least expensive brand offered. I have never had a problem with any of them.

Yes, I think your Ranch dressing could very well have been the problem. At least I know it would do me in! Cottage cheese makes a decent dressing and many here have concocted recipes adding various herbs & spices to jazz it up. There was a thread on that not to long ago under diet, and I imagine a search would pull up many dressing ideas.

What made your IC engage (if it is IC) is the million dollar question! Lots of theories our there on that one! Personally, I blame past UTIs. It's not uncommon to hear of some type of trauma (Infection, surgery, stress, etc) beforehand. Maybe it was always there, just waiting for something to set it off. I guess if we find that answer we'll be one step closer to curing it!

I do want to say that for most of us, things do get much better than where we were in the beginning. But at first, things can look awfully dark! Vent all you need, -this is a wonderful place for that! IC doesn't play fair and you have every right to feel cheated! Again, most of us do get some degree of control over it and live pretty normal lives. I bet you will too!

Hugs,
Vicki

[dancemomof2]

I sent you a PM. and wanted to post a (((((HUG)))))

[kkwhitney]

I know how you feel. It was really hard to digest it all when I was told that I have IC. I sat and cried awhile. I get mad quite often and then I told myself I wasn't going to let it get the best of me. I still have moments when I am overwhelmed by it and feel helpless but it always passes. Once you finish the elemenation part of the IC diet when you start introducing foods back into your system, you may find that there is quite a bit that you can tolerate that you didn't think you couldn't. There are some things that you will not be able to have again and that may make you a little sad for a moment but you can get through that too. Trust me I never realized how much I would miss the taste of an orange or if I had only known that Mr.Pibb a year and two monthes ago was to be my last I would have drank alot more that day. :) As for going to restraunts if you really look at the menu you might find quite a bit that you can have. I have learned from experience that you can have them substitute differnet things for you at some places so that your meal is more bladder friendly. I hope you find relief and a place of calm.

[Sher E]

Thanks all~

The ranch dressing is usually ok and no problems with sour cream and yogurt (I think). But yesterday's ranch was a Cheesecake Factory mix that was jazzed up a bit to go on a Barbeque chicken salad. Although there wasn't any barbeque on it, just chicken breast. There was black beans, but I thought I read where those were ok.

However, I had a few cashews, some sunflower seeds, a bit of mango. All things that are seemingly ok and such small portions. Thus the problem of ever trying to figure out what causes what.

The other night a had steak, potato, green beans. A-1 sauce no problem (since I've used it more than once) and that day I had a roast beef sandwich for lunch w/ avocado (had before, no probs) and mayo. The next day I felt wonderful.

Every day that I feel wonderful I hope it turns into two days and then three... I keep hoping this will disappear as quickly as it showed up.

I stopped at the grocery store tonight and couldn't even find a jam I could use.

And the thought of trying for a second child seems pointless now....how could you cope with the pain and being pregnant?

I'll try to remain positive because I find hope with all of you.

Thanks again.

[FrankieBee]

If you're eating A-1 sauce without a problem, you are doing good! Trying to figure out what you can and can't tolerate is like walking on eggshells. I've had IC for 2 years and I still get frustrated with the diet and I'm getting my masters in nutrition. So my classmates are eating apples and oranges and ironically I can't eat them even though they are healthy. It's just maddening. The only fruit I can really tolerate is a brand of frozen organic blueberries I buy at whole foods - (Stahlbush Island Farms) They're pricey, but I got to have some fruit sometimes! IC is quite challenging and I have to admit a couple weeks ago I woke up and just started crying because I started thinking about how I was just so damn tired of thinking about what I was going to eat. I think that was just after a hut trip in the mountains I took with a group and I had to cook my meals seperately, b/c I could not have what the group was having- I think the hardest aspect of this condition is the social aspect - I'm supposed to be cheering you up, but I'm not feeling too Pollyanna right now. The symptoms do seem to wax and wane. The main thing that keeps my symptoms under control is the fact that I take one Prosed pill a day (it turns your urine blue and alkalinizes it) I think it allows me to get away with more especially at night when it's really kicking in. I don't know if anyone else uses it like this, but my doctor recommended it and says that it's such a low dose that I probably will not have long term side effects from it (though I don't like having to be reliant on a pill). Well you know things could always be worse, right? I have a friend whose mother's intestines basically died on her. She can't eat anything and is tube fed. Can you imagine. If she eats she gets really really ill. Now thank god I don't have that. IC definitely makes you pay attention to your body and take care of it and probably keeps you from developing some other terrible autoimmune disorders like MS or maybe cancer, so maybe it's a blessing in disguise. Sounds like your case is pretty mild if you are eating mayo, A-1 and mango with little reaction. consider yourself lucky!

[kadi]

Hi Sher,
I use Marie's lite ranch dressing at home without a problem, I think, because it's preservative free.

You may want to try an elimination diet &/or diet journal for a few weeks to see if you can reduce your symptoms further. Julie B. sets it up very clearly in her book, "Confident Choices", which you can buy here in the ICN store linked at the top of this page. It makes it pretty easy to identify what bothers you & what doesn't.

That said, it is perfectly normal to feel grief when you get IC. Food is not just sustenance, it is highly social, and having to eat so differently from other people is very difficult. When I first got IC, I was so sick that I could not sleep, could barely eat, could not wear anything in my closet (had to wear shift dresses for a while), had to strictly curtail my activities, barely hung on to my job, and had to cope with disbelieving family members who also could not understand how this could happen so fast and could be so severe.

I think grief is understandable and has to happen in order to heal, as long as it's kept in perspective. Is there anyone you can talk to about what is happening? The boards are good, but it's really important to have someone who can sit with you and help you work through it.

I received help from my church. I went to the director of congregational care and she arranged for someone (a Stephen minister) to come to my home once a week to listen, talk & pray. I also received pastoral counseling from the ministers at my church. I (through my health insurance program) talked with a medical social worker once or twice a month about how to manage chronic illness and the stresses that come with it. I also called Jill O. for the orientation to IC by phone, and spoke with a patient advocate with the ICA. Those phone calls were instrumental in my getting well and in feeling understood!

Just want to encourage you not to do this alone, come here as you need to also, okay?

Sending a hug & wishing you better days!

(PS. I am much better and have 90% of my old life back, most days. I sleep well, can drive without difficulty, wear blue jeans/boots all the time, work fulltime and take classes, most of the time I can exercise. My travel is less adventurous than it was, but it's still more than most of the world will ever get to do. My food, well, I'm pretty restricted, but if I have a kitchen & a green grocer, I'm okay & make pretty tasty meals, if I do say so... I hated it when people said there'd be a "new" normal, but most days I'm pretty happy.)

PPS. Also want to encourage you that you are still very new to IC. It takes a while to find your "personal combination" of treatments, we are all so different. Remember that for every one of us on the boards, there are countless others who have responded to treatment, and don't need to be here!
Most people with IC do find what works for them & go back to good quality lives.

[rosesitty]

Sher - it sounds like you need a firm diagnosis, for your own state of mind and also to develop a multi-modal treatment plan. Not everyone has a cysto/hydro or PST to get that diagnosis. My uro determined I had IC by doing an office cysto (and seeing how inflamed it) was and by my symptoms. I've had IC for three years, for 2 1/2 of those years it was really mild, I could eat whatever I wanted, had to watch the diet coke and iced tea intake, and eliminate all alcohol. In November, I developed a flare, and I can't seem to get back to my baseline. What scares me is that my IC has escalated and my old baseline is no longer. Once you can get things under control, you can begin the process of adding things back into your diet. The strict IC Diet isn't forever. I went on it in January to see if it would help quiet things down. Hasn't seemed to make that much difference, but you'll find that others are helped a lot by watching what they eat. Yes, there are frustrating and sad days. But, there are lots of other days when you feel pretty good and I've tried to focus on that. It's hard, but it's a day by day process.
Regarding your Evian question -- Evian and Fiji have the highest PH levels (I think 7.2 - 7.5), which deacidize the urine. There's another brand out there mfg'd in Washington
call ZaQua that has a PH of 9.5. I can't seem to get my hands on it in Oregon, but I'm willing to drive across the state line to get some! Boy, that sounded funny, like I was going to get drugs! LOL
Regarding your question about what causes IC, there are as many stories as there are ICers! Mine started when I took Accutane (an acne med) for two days and started bleeding from my bladder...and here I am today. There are people who've had many UTI's and pelvic surgeries. People with allergies... It's really hard to say - that's why it's so hard to treat!
What makes it engage? It could be any trigger. For me in November I think it was a combo of going off birth control and taking OTC meds for a sinus infection. It really knocked me for a loop. Then I got a flare on top of a flare from drinking herb infused tea from Starbuck's that really wacked my bladder. For others...? There are so many answers to that question.
Please feel free to pm me anytime if you have questions or need support. It's hard for family and friends to fully understand. They think you should be able to take some medication and be instantaneously well. My family and friends have begun to stop listening, so I've developed a few precious support system friends here on line. (Thanks Diana and Kara!)
I hope this has helped - you've been given a lot of good info and support from all the people who posted here. Hope this helps you on your IC journey.
Stephanie

[BigFig]

Hey Sher, I can't tolerate avocado's or mayo, so there are a couple of things that you can have that most can't tolerate. I don't have to drink Evian water either. I drink spring water and am fine with it. Oh, and potatoes, sometimes I can tolerate them, sometimes not. One thing I have found out is that I can't tolerate the potato skins.

Believe me, in the beginning I spent alot of time crying and being p***** off. Nothing wrong with that it's part of the process. After all this is a life changing process. It takes a long time to figure out what your trigger foods are (it's been three months for me, so far), and remember that flares can start up immediately or up to a couple of days after you have eaten something that your bladder doesn't like.

Hang in there and know that we are here for you, you are not alone and we would all love to join your "pity party". :kissing:

[Sher E]

All of your comments and suggestions are really so helpful. This morning I got up, felt a bit sore, but ok enough to get up and get out of the house. I found myself doing something new. As I was driving I started to stare at other people thinking to myself how their bladder isn't hurting them, that they can drink that frothy cold Starbucks whipped cream drink and I can't.

I was reading Frannie's column last night and saw the part where she said many people are in denial and tey keep hoping this will disappear just like it showed up...quickly. That was me in that statement. I keep praying that it will go away like it did 7 years ago. That I won't complain about the things in my life anymore if I can just have my health back. I am trying not to become depressed, but every twinge of pain reminds me that I am not "normal" anymore.

When I came home I had to take my jeans off and thong and just put a pair of sweat pants on. I don't have the burning or urgency/frequency thing going on but today I feel a bit "raw" like. It doesn't hurt when I pee, but it feels as if I sit wrong or a certain way I can feel my urethra and every pubic hair hurts (God, that feels so inappropriate to say)...what's up with this? I hope this doesn't escalate into the burning some of you experience, because that is one feeling I would lose my mind over.

I found that there seems to be a support group in the same town as we live in. So I will email them and see what the scoop is.

For those of you on Elmiron or other drug cocktails, do you still follow the diet or does the drugs allow you more freedom with what you eat?

So far today, it's been scambled eggs on whole wheat toast and water. Wow..lucky me.

I'm sorry if I sound sarcastic, but I am just in complete denial, why is this happening to me mode.

Rose~ I went to the water site ZaQua http://www.advanced-h2o.com/contact.asp
and they said you can request a special form to take to your local grocery store and have the Manager order it for you.

On another note: How do I get into my profile to post a picture?

[kkwhitney]

The denial mode is completely normal. But when I get overwhelmed by pain, like I did this morning, I try it just find a quite placed to sit and breathe. Collect my thoughts and feelings on paper so I get them out.I find keeping a jornal helps me. I can go back and see when I had other bad days, and then when I had good days. When the good start outnumbering the bad I know that I am on the right track. And try to focus on getting to a point where I am in remission. I know that seems like a hard thing to reach right now with the way you are feeling right now but it has happened for others so it can happen for us. We just have to hang in there. Please feel free to pm me anytime you just need to talk or have someone to listen.
:grouphug:

[dancemomof2]

Sher,

I miss the frothy Starbucks as well, BUT the Starbucks breakfast blend coffee is very low acid and I can drink an entire pot and never bother me. Other coffee's set me off with a cup. Hey at least it is Starbucks of some kind :biglaugh:

[kadi]

I can drink the Starbucks vanilla creme drink (no coffee).
Or if I want coffee, I can drink Puroast decaf, made in the toddy maker, with lots of milk. (Puroast & toddy maker available on this site, click on shop & market at the top of this page.)

[BigFig]

Sher, what were you symptoms 7 years ago? The same as now? Just curious because you stated that you have not yet been officially diagnosed. Also, what meds besides Ditropan are you currently taking? I was one of the unfortunate ones that had an allergic reaction to Elmiron. I started on Cymbalta a few weeks ago, an anti-depressant, it has helped me tremendously with my depression as well as pain. You can do a search here on the boards and read about the results others have had with it.

I know what you are going through. Thank God I found this site when I was first diagnosed. Believe me I felt so alone. I had never even heard of IC and neither had my family or friends (except one, who suggested I might have IC, she is a midwife). It's really hard explaining to people what the heck is going on and how you feel. Or going to a dinner party, that you didn't feel like going to in the first place and not being able to eat anything they are serving. The list goes on and on... :headbang:

Things will get better. I know it may not seem like it now, but it will. Hang in there :)

[Sher E]

BigFig~ Several years ago I would get UTI's. Even before 7 years ago... so much that I always had some antibiotics on hand. But like a dumba** I would take the medication, feel better and then stop the medication in mid-course. Then one morning I had what I thought was a horrible infection that was not responding to my meds. My Gyn thought I may have IC when I called him in so much discomfort. I found this site, freaked out and headed to a Urologist (the same one I have now) and he gave me Ditropan XL and within a few days I was back to normal and did not have a UTI for a long time, maybe one at the most in several years. During the last several years, I've had a baby, c-section, 2 laporoscopies and no problems until this past year. After my last Lap (last April) I felt my bladder (not urethra) feel "weird". I thought maybe I have an infection minus the urgency, pain and burning. It went away. Then A few months ago I had bad pain after my period. Felt like bad cramps. I also felt the bladder thing aain. Nothing major just aware of my bladder feeling. Could eat anything and didn't have any pain. The cramps turned out to be a cyst on my right ovary. But from that point on the bladder weirdness hung around and then gradually got worse and worse. Of course no infection.

Now, I'm at the despair part realizing that it may never go away and trying to come to terms with what that all means. I'm scared and upset.

What made it go away years ago (shrug)...no clue. But my hopes were high that it would go away again. Four days after taking Ditropan XL I felt totally normal. I endulged in some sodas and an orange juice...EEEK! I was messed up for two days.

So here I am now and trying to figure this all out (with the help of all of you). You don't know (well..maybe you do) how much I wish for an answer. I'm not on any other meds except for some pain meds when I need it.

Kadi~ Will try that Vanilla drink...(when I have the balls to)

[cavalier]

This is so hard, I'm going through it too. I eliminate pretty much everything and get to feeling lots better and think ok I'm cured and the IC is gone. Then I start having things that I eliminated like caffiene, or citrus friut and over a couple of days I get sick again with bladder pain. I have to get rid of the delusion that when my pain is not bad and I think I'm better, that the IC is gone. I've been through this since October and I know in my heart it always comes back. I'm going for a urodynamic study in the near future. I hope that sheds some light on something new although I doubt it. I guess it's just learning to live with IC, sometimes it seems impossible. I guess I'm still not at the place where I've found peace with this. Especially with the active life I lead I ALWAYS have to show up and put on a happy face. That's the hardest part since not even your family can understand.
Jen