I'm scared

[ophelia33]

Hi, I am struggling with this IC. When I was diagnosed it wasn't that bad, mild with only occasional pain. Intimacy was ruined though. Now, my IC seems like it is progressing and I have pain more than before and my frequency/urgency/pressure can keep me awake most of the night at times. I am scared for myself. I don't know what tomorrow will bring. I have a case of the what ifs. What if the meds stop working, what if it gets worse, what if I can't handle it, what if I never find another person to be intimate with...the latter takes a back seat but I do feel like a social outcast in the relationship area.

I feel like I'm watching everyone else live. I have episodes at the grocery store where I envision myself just leaving the cart there with my 6 things in it and just walking out defeated and just wanted to starve to...anyway, not having a cure or significantly reliable treatments scares me.

I don't want to be confined to my home. I don't want to be homeless b/c I can't afford my rent b/c I currently am on disability for depression not IC. Disability isn't granted to me forever and the uncertainty of my medicare comes up this september as my case goes to review. I am purchasing the IC disability kit but I don't want to be disabled. I've been out of work for four years now and the past three on disability. Its a solitary lifestyle.

I seem to be living each day at a time always on edge as to whether I'm getting better or worse. I can't be perfect on the IC diet and lord knows how I try. I make mistakes and I get hungry too. I'm no different than the rest of the world.

I'm afraid there will never be a cure even though I pray for one. Sometimes I am even in denial I have this. Everyone in my family is healthy as a horse.

I went to a restaurant tonight for the first time in 6 months or more. I had to find the bathroom and I felt like a mooron. I made it through dinner w/o having to go again and I'm grateful for that. There wasn't anything on the menu that looked safe. I got steak and potato. Even plain came with tons of seasoning. I didn't even enjoy the meal as I was so afraid of what was in the food and what was going to happen after eating it.

I'm not ready to leave life yet and I don't think I have the courage to harm myself, I don't want to ever get to that point and I try to tell myself to take it day by day but I'm having a hard time planning for my future when I know how problematic being symptomatic can get.

My physical therapist said not to let my bladder run my life. I have a bladder disease, how can it not at least interfere? It does run my life in ways b/c I would like to eat w/o fear. I feel I'm developing an eating disorder and I had those when I was in my teens. I overcame them and have chosen not to live like an anorexic/bulimic and now I feel like I'm almost forced to live an anorexic lifestyle. Like those with anorexia I am afraid to eat.

I obsess about food. I have a hard time being sympathetic to "normal" people when they are talking about the grocery store not having one of their items when they have the whole rest of the store to pick from! I miss the movie theatre as I used to pack my purse and go and eat.

I'm afraid my life will be full of deprivation and yearning for things I can't have. I used to smoke and quit. When I get stressed I'd reach for a cigarette. I'm stressed, smoking is bad and if it didn't hurt I would smoke b/c I don't care if smoking cuts my life short by 10 years or something. I have become a different person and I just don't like this.

No one gets to pick their ills, I know that. Its just this illness is very hard on me for many reasons.

I'm just afraid of the future. I don't want things to get worse. I have no control over that though and I feel helpless a lot.

Sorry so long, I'm just scared is all. Hugs,
Ophelia

[ICNDonna]

I hope your tomorrow is better.

Sending gentle hugs,
Donna

[Briza]

Hi
All of your concerns are real and valid. Please know that. But please also know that things can, do, will get better. Moreso for some of us than others, but for majority things do get better at least to some extent!! And any progress is good!
If you can, please take a deep breath and a step back and please re-read your post.
Many of the things that are causing you so much worry can be addressed, and I think one of the things that stands out to me most in your post is your obsession about foods. Like you said, none of us are perfect and even those with the most severe food sensitivities and even those who know very well their dietary triggers screw up at times with the diet, sometimes by accident and many times VERY knowingly!!:) We are not perfect and food is something we MUST have, ya know, so ANY food is better than no food.

Please please try to relax about the diet....for most of us it takes YEARS to really completely determine our food triggers, and a big part of that is because regardless what we eat, sometimes our bladders are so irritated and in so much pain that it is just impossible to determine what if anything we have eaten is causing our symptoms!

I know this for sure in my case...it was not until my bladder calmed down with the help of pain meds and pyridium and drinking lots of water and just plain ole time that I was finally able to determine what foods caused me problems...and that process included a year to dx, another year to getting good for me treatment, and another year of finally having symptoms under control enough to determine which food/bevs caused me problems.

During the first 18 months of symptoms, yes my symptoms progressed from out of the blue onset of minor but irritating symptoms to extremely painful, extreme urgency and frequency and other symptoms. But then after that 18 month point my symptoms plateaued and progressively got somewhat better.

Yes, of course during that time I was doing my best to stick to bland diet, and yes I lost a lot of weight that I did not need to lose, but the fact is is that it was because I felt just too ill too eat, was too ill and exhausted to shop, cook, eat out period. I like you would walk into SuperWalmart hoping to get some food, but the pain I was in caused me such anxiety, and knowing that walking around SuperWalmart was only going to cause me MORE pain, nine times out of ten I just barely made it to the produce section and then pain, exhaustion anxiety would take over and I would leave store without buying anything.

Obviously anything we can do to treat our bladders more kindly and by following the diet best we can can only be of benefit! BUT, you gotta eat, most importantly for your body and overall health and energy, if not specifically for your bladder. And in my experience, didn't matter what I did or ate, it was not until I started to manage my pain properly that I was able to conquer those trips to SuperWalmart and get some foods, IC safe or not, to take home so that I could at least have something anything, IC safe or not, to nourish my body.

So, after discussing the grocery shopping Super Walmart issue with my dr, telling him how many times I had just left the store without buying ANYTHING because I was either already in pain or KNEW that walking all over the store to find even a few foods to put in my cart would cause me pain, burning, urgency,etc., my dr said well if you KNOW it's going to cause you pain, why don't you take your pain med and pyridium BEFORE you go shopping?????DUHHH!!! So that is what I started to do. I would then take my meds about one hour prior to going to the store and that solved that problem completely. I can now do all the shopping I want without issue. I mention SuperWalmart so many times lol cuz that is the only grocery in my small town. Actually there is another small (tho more expensive) mom and pop meat market grocery that I have learned that sometimes it is just best if I do my shopping there. Even tho there prices are higher and choices are lower, I know I can get in and out of there in under 10 minutes, esp if I go there to buy things just for a specific meal that I need to eat NOW. Reduces much of the anxiety about symptoms coming on while I am shopping.

Sweetie, please, with your past history of food issues, please look into every option that you can to reduce your anxiety about eating and shopping for food. Possibly managing your pain like I did is an option and might be helpful??? I am not a dr nor a licensed therapist, but I hope that you and others here don't mind my saying that I think that putting strict IC diet on the back burner right now might be best! (((hugs))) like I said, you gotta eat, and for reasons even more important than the health of your bladder. Your overall health. At this point I don't think that is what you need to be obsessing about, the IC diet I mean. More than anything I think that you need to eat, period. I don't care if it is healthy food, junk food, fast food, all the wrong foods, but you gotta eat!!:)

:grouphug:

[kadi]

Dear Ophelia,
I could have written your post my first year with IC. One thing that's really important and sometimes hard to do is to not project your entire life based on right now. IC may not be curable, but it is treatable. The hard part is the first year or two it takes to get to the right combination of diet, medication, and movement. And most patients' symptoms level out after about 18 months, this was the case for me (and apparently for Briza) & this is what my IC specialist who sees hundreds of IC cases told me.

Briza is right, it takes awhile to get the diet thing figured out. I did not know how to cook before IC. I had a few family recipes I could make, but they were Hungarian, involved lots of paprika & frying. I had no idea how to put other things together & frankly wasn't that interested in or happy about learning. The IC diet was a shock for sure. So, what I did was to eat only out of the "usually ok" column & become a label reader to avoid preservatives & chemicals. Then I tested one by one the middle column foods and also had allergy testing done. I am one of the most diet-sensitive IC patients on these boards and I still have managed to make the diet work & even taste good. What really helps is to approach the diet with a sense of "what can I eat and how do I put it together?" Now, did I grieve the losses? Yes, and some days still am bummed about it. But, I just keep looking for new safe recipes to try and make the best of it.

You are still early in your treatment. I believe you will find things that help. You are right to try to take things day by day. When I'm having a bad spell of symptoms, I try to think, "what is one enjoyable thing I can do today?" My worst summer with IC, I went to a used bookstore & browsed the craft books until I found a book on how to make bead embroidered Xmas ornaments. $1.80 bought the book, I used coupons to buy the supplies & I spent the summer making Xmas presents for my family. I'd not done any crafts since Girl Scouts in 6th grade! It occupied my hands & mind, I could feel a little generous again, and it took up time so I wasn't worrying so much.

One thing a medical social worker helped me with was to look for the essence of what I enjoyed before IC and see how I could keep the essence of it, even if the logistics were problematic. Used to go to foreign movies = rent foreign movies at home. Used to travel internationally = go to the Spanish book section at the library & read a book in Spanish.
Is it the same? No, but it's better than nothing. I don't mean that in a trite kind of expression way. I tried "nothing" for awhile, so it really is better than that.

Hang in there. You will get through this. And I hope today is a better day,

[ophelia33]

Oh, thank you all for so much support. It is so comforting to know I am NOT alone and that others have gone through this too.

Thanks Donna for hugs, thanks Kadi and Briza for validating my experience. I am realizing so much about myself since IC. I realize I am very very hard on myself and I strive for perfection. When it comes to diet, I over analyze everything.

Last night I ate a pear and had NO increase in symptoms. Pears are on the safe list. I'll eat them w/o fear. Relieved! I guess it will take time as I am symptomatic and hard to truly see what is doing what at times even on a very strict elimination diet. I know I cannot have disordered eating and that leads to serious emotional problems. I feel I am setting myself up for that deprivation/binge cycle that I do not want again.

I took someone's advice from here the other day and tried Golden Oreos. I was not in crippling pain so I can put them on the possible list for an occasional treat. Maybe they will have to go in the future, but maybe they can stay too. I guess time will tell. It is amazing what things taste like when you haven't had something that sweet for a while!

I know my body cannot heal w/o nutrients.

My dr. told me to take ibuprofen and although I just deal w/ the pain b/c Ibuprofen doesn't do much, I truly do NOT want to be strung out on pain meds for the rest of my life. Vicodin helps but I'm not scripted vicodin for IC (they are left from surgery 2 years ago) and who the heck wants to pop vicodin all day? Some people have to and my heart goes out to them as I'm sure they are in pain!

I will keep in mind that there is progress to be made and that addressing certain things are important. I'm playing the waiting game for an appointment to beg for lap surgery to see what is going on w/ my endo. Maybe regular ibuprofen would help me through this next week until I get some answers from the dr. about that. I get scared when the ibuprofen doesn't do anything, I guess that's why I don't even take it anymore.

Like Bri said, I am tired from sleep disturbance and that is adding to everything. Sometimes I don't even get to the store and ask my roommate to pick me up some water. I don't like to ask for help but I realize in moderation others don't mind too much. Its just hard for me to ask. I've heard the mind over matter thing so much in my lifetime I always think if I just change my thoughts I should be able to do anything. Thats not always the case w/ a medical issue or a mental health issue.

If this was just b/c I needed to change my thoughts I would have cured IC completely!!

Sorry off topic.

Thanks everyone for taking the time to write from your heart. Its true, Kadi, that looking at what I can eat is more helpful than what I can't.

I think I'm still in that denial/angry phase of the grieving process of not having things I used to have. Getting back to doing things I did before IC and modifying them a bit may be a whole lot better than "nothing"! Pull myself up again and dust myself off again! This illness is a lot of work! I think I need a time out every now and then.

hugs and happy 4th!
Ophelia:hi:

[ophelia33]

Hi, I was looking for the disability kit just in case I need it and hopefully I wont. Where can I find it online to purchase? This probably isn't the right forum to ask this question but I get really good feedback here.

thanks again,
Ophelia:)

[Briza]

Ophelia
I am not certain if the IC disablity kit is for sale here on ICN??? I am not sure but I asked someone about it here one time and I think I was referred to the ICA (Interstitial Cystistis Association) website. So if it is not available in the ICN shop here, google that website maybe it is there. If I am wrong I am sure someone will provide the correct info.

I am glad to see you post some postive things in regard to where you are now and what you can do right now to help yourself and what can be positive and hopeful future expectations!!!

Many here have posted that their bladders cannot tolerate ibuprofen or alleve, so you might want to keep on eye on that to see how your bladder reacts after taking ibuprofen! However, I can tolerate both and both are very helpful for my menstrual pain, the only things that are helpful, actually! But absolutely, I can understand not taking a med that does not help with your endo pain, whether it bothers your bladder or not.

I hope your upcoming appt w/ dr regarding your endo and possibly LAP is productive. I know that LAP surgery is really important for those dealing with endo, and I know that there are meds that can help control endo symptoms, but that is about all I know about endo except that it can be very painful. I did have LAP duirng my IC dx process, no endo was found, so that surgery was pretty easy for me. I imagine if endo is removed and such during a LAP then recovery must be harder. Have you had this done before?

Please ask for assistance from your roommate and whoever else is nearby to help you out when you need help. It is normal for people not to offer help if we don't ask for it lol!!!, but like you said it is also normal for people to give assistance when we DO ask...it is as easy as saying, while you are out would you mind picking up this or that or me, here's $10 whatever bucks to cover the costs....most normal people will say yes without even thinking about it....if they say no, well, then you gotta wonder if they are normal or not:lmao:

Anyway, I am glad you posted, glad you feel like you got something out of the responses you were given. I know I pretty much said eat everything don't starve yourself is most important, and I believe that is really important, but what Kadi posted was definitely more specific on how to eat a lot of things while still staying within the usually ok guidelines so I am glad that you can eat pears, and golden oreos, too...tho I don't know what a golden oreo is, sounds like you need the calories and the satisfaction of eating something sweet, so I say eat the whole box!!;) Take care...

[Mrs. Peel]

Dear Ophelia, I'm glad your case of the what ifs is relaxing. I have some idea of how you feel. I'm going into my third month after an IC diagnosis.

I've been on disability for recurrent major depression since the early 90's. I was self-employed and could work some, but I ran out of energy quickly and would need time away from people to decompress. Now I can't do that job at all because my skill is pretty physical and would put too much pressure on my bladder. I really miss the feelings of validation I got from that job.

Now my SSDI is coming up for review, too. I'm kind of worried because that's what made it possible to have what psych and medical care I need. My Uro says not to worry because all his IC patients who have applied have gotten it, and I'm sure my psychs think I still need it, but the review is still stressful.

I truly believe that it will get better. I get better every week, but I remind the people around me that it will probably be over a year before I start getting well. It reminds me, too. I live on the edge of overdoing and wind up needing to keep still for a day or two, but I think I'll learn my limits eventually.

Your posts sound intelligent and even-tempered. You've overcome obstacles before. You have more bravery than you realize. Your writing is actually quite beautiful. I think you'll be OK, too.

[ophelia33]

Bri, Oh, my, I think you are right. The disability kit is probably on ICA. :bonk: As far as the ibuprofen and my bladder goes, when I'm reaching for it I honestly couldn't tell if its making my bladder worse or better b/c I'm usually in a lot of pain before I take it. NSAIDS like Ibuprofen I use sparingly also b/c at one point many years ago I was on Celebrex for 6 months, Celebrex is an NSAID too and it gave me stomach inflammation. I had an endoscopy to diagnose that. It got better but had acid reflux disease ever since.

I did have lap surgery two years ago after my IC diagnosis b/c of very painful menstrual cramps. Endo adhesions were removed from both ovaries but I was never treated so the endo may have come back and only surgery will say yes or no to reoccuring endo. My surgery was probably as easy as yours only my recovery was prolonged b/c my rotten then husband left me the DAY AFTER surgery and it was hard getting around on my own and the lack of rest and increased stress no doubt delayed my recovery. What a nice man I'm thankfully divorced from!:woohoo: Divorce really did stink though.:(

Positivity is not a strong suit of mine and I know I have to be more positive. I'm truly trying and I know I come up short a lot. I'm learning to be more positive from many people here and I am thankful for that. I grew up in a very very negative environment so learning to be positive is a whole 'nother animal.

I did manage to eat a little more today and to just put aside the fear and just do it. I'm no worse physically but a little better mentally. I don't want to jinx anything!

A Golden Oreo is an Oreo but its like a vanilla cookie instead of chocolate. Someone here said they could tolerate them. The verdict is still out on them. They contain soy lecithin and I don't really know what that is other than an emulsifier. I didn't want to eat soy lecithin but I was just so bloomin' hungry for a treat. My dog loves them so they can't be healthy. lol!!!:lmao:

thanks for the help and kind words. Hugs,
Ophelia

Mrs. Peel,
I think we are in the exact same SSDI situation w/ the depression thing and the psych, health care thing. I would so like to be out working though instead of being home. I miss the social interaction which wasn't great but it was better than being alone most of the day when everyone else seems to be at work!

Yeah, my what ifs are relaxing a bit. They never truly go away as I'm such a worry wart which doesn't help my anxiety at all.:rolleyes:

Adjusting to limitations does take time and I too need to decompress every now and then. Patience is something that would be wise for me to learn!

Thanks for the compliment. I hope we all get better soon.

I've met some very comforting people here that I think I can learn a lot from!

hugs everyone,
Ophelia:hi:

[dbdab]

Dear Ophelia,
First let me say I am so sorry for your pain and suffering. I have had IC for 7 years. Your words are so eloquently written that all I can say is your words are my sentiments exactly. "I'm scared." You are so brave to say it so simply and honestly. I don't know what to say to encourage you about IC because I'm currently suffering in a very dark place right now. What I would like to do is suggest to that you write out your feelings whenever and wherever you can. I'm here to tell you that you are a gifted writer and in that maybe you can find some solace, some escape from your pain. I'm currently going through disability and it is a very rough, lonely process, but I am doing my best to see it through. I am currently appealing their decision to deny me, which is unfortunately the cruel standard practice for applying for SSD. Over the past 6 months I've begun to actively advocate for change of the SSD process by writing to my state government officials and to the President several times. I've also been trying to look for ways to raise awareness to IC. It's a work in progress. I go through bouts of serious depression, but whenever a feel an ounce of extra strength I fight. I fight for awareness and change for all of us, for my children and their children to come, for everyone's children. We may not see change now, but if it comes later it will be worth the fight. That's one thing that helps me. And, I agree that this disease does have a hold of your life. It lives in your body, so we must live with it. That takes changing our lives, finding a way to accept it and that isn't easy. I have not found acceptance and as much as I talk about my disease I have not found a way to own it. I am in denial always. I don't come to this site as often as I would like to because of my depression. Please know that what I've told you about myself comes not from a place of negativity, but understanding and caring. Write what it is in your heart, even if you only feel darkness now. Let yourself go there in the dark and feel your way through it because your heart also holds the light you need to help you find your way back to you. I wish you love and support.

Hugs,
Deb

[ophelia33]

Dear Ophelia,
First let me say I am so sorry for your pain and suffering. I have had IC for 7 years. Your words are so eloquently written that all I can say is your words are my sentiments exactly. "I'm scared." You are so brave to say it so simply and honestly. I don't know what to say to encourage you about IC because I'm currently suffering in a very dark place right now. What I would like to do is suggest to that you write out your feelings whenever and wherever you can. I'm here to tell you that you are a gifted writer and in that maybe you can find some solace, some escape from your pain. I'm currently going through disability and it is a very rough, lonely process, but I am doing my best to see it through. I am currently appealing their decision to deny me, which is unfortunately the cruel standard practice for applying for SSD. Over the past 6 months I've begun to actively advocate for change of the SSD process by writing to my state government officials and to the President several times. I've also been trying to look for ways to raise awareness to IC. It's a work in progress. I go through bouts of serious depression, but whenever a feel an ounce of extra strength I fight. I fight for awareness and change for all of us, for my children and their children to come, for everyone's children. We may not see change now, but if it comes later it will be worth the fight. That's one thing that helps me. And, I agree that this disease does have a hold of your life. It lives in your body, so we must live with it. That takes changing our lives, finding a way to accept it and that isn't easy. I have not found acceptance and as much as I talk about my disease I have not found a way to own it. I am in denial always. I don't come to this site as often as I would like to because of my depression. Please know that what I've told you about myself comes not from a place of negativity, but understanding and caring. Write what it is in your heart, even if you only feel darkness now. Let yourself go there in the dark and feel your way through it because your heart also holds the light you need to help you find your way back to you. I wish you love and support.

Hugs,
Deb

Hi, Deb,
Thanks for such a compassionate reply. I too struggle w/ acceptance a lot of the time. Acceptance is a very hard thing when you just don't want what you have to accept you have. I sense you understand depression all too well. I hope you find relief from IC and depression too. IC awareness is so important and it is very hard to spread the word as those around us do not seem to understand or they think its "all in our heads". Sometimes I catch myself in thinking this is "all in my head" then I realize it is a true medical illness. It is very hard to deal with.

Sending you many hugs,
Ophelia:hi::grouphug::grouphug::grouphug:

[aurora328]

Hi Ophelia,
First let me say what a beautiful name! Right now I am ok I have things mostly under control, but a month ago I was a mess in the bathroom more than out, I spent several days only leaving bed to go to the bathroom (ok so maybe I wasn't in bed so much as on the toilet) (little smile there) I am right now under constant worry about when I will not be better. When am I going to wake up at have it get worse again? I am newly diagnosed so I worry how much worse it will get...I understand how you are feeling. I try and remember though if I don't fight for myself who will fight for me. Don't let it win tell yourself your are going to keep fighting it!
Sara

[ophelia33]

Hi Ophelia,
First let me say what a beautiful name! Right now I am ok I have things mostly under control, but a month ago I was a mess in the bathroom more than out, I spent several days only leaving bed to go to the bathroom (ok so maybe I wasn't in bed so much as on the toilet) (little smile there) I am right now under constant worry about when I will not be better. When am I going to wake up at have it get worse again? I am newly diagnosed so I worry how much worse it will get...I understand how you are feeling. I try and remember though if I don't fight for myself who will fight for me. Don't let it win tell yourself your are going to keep fighting it!
Sara

Hi, Sara, and thanks for the complement. Things seem to be calming down for me some at the moment. I'm getting a better handle on the IC diet and beginning to learn to use herbs to add some taste to IC-safe foods. I've not even begun to eat from the "may be okay" list and that's okay.

Sometimes I think back to when I was doing the 'from the bed to the toilet' ordeal you've mentioned trying to sleep for goodness sakes and it just seems like utter chaos. Like one day someone took my life and turned it upside down or put it in a blender. Everything got messed up. My sleep schedule was a mess, my med schedule was a mess b/c my sleep schedule was a mess, my eating was down to a bare minimum, my appointment schedule was a mess b/c I wasn't sleeping. My depression got worse and my pain was worse b/c I was stressed, depressed and sleep deprived yet alone worried about my urinary function which I was so desperate to get under control and so afraid I'd never sleep more than a few hours a night. People really don't understand how something as simple as bodily functions can mess someone's life up if they aren't functioning properly. Something as simple as "lieing down and relaxing became a stressed out nightmare".

I am now taking meds so I can sleep at night b/c I have so much anxiety over "having to get to sleep before I have the urge to pee". My schedule is still a mess but things are sl-o-w-ly falling back into place. I do often wonder whether I'm going to get a break between now and the next thing to happen to me as I too have that "waiting for the other shoe to drop" way of thinking at the moment. I don't know if that will ever go away.

Something one of the support volunteers told me really helped and maybe it'll help you too. I'm paraphrasing of course. She said to "keep your diet clean" and to "take your medication as prescribed". I think that made a difference for me. Sometimes I didn't take my Urelle/Pyridium when I probably could have and it might have made it easier to deal w/ the bathroom trips. If you are newly diagnosed, just know that it can get better, focus on getting better. I focus a lot on how bad it can get and that is a reality but try not to get caught up in that I guess I'm saying. I do it too often and I don't want to see you go down that road. You have a strong mentality to fight this. I can tell. I truly think you'll be okay. Keep an open dialogue w/ your dr. and be willing to try many treatments. Don't give up...I don't think you will.:wink:

Many hugs:grouphug::grouphug::grouphug::grouphug:,
Ophelia:hi:

[starflight]

I'm just like this person, I'm very scared to right now because my symptoms came back after like 4 years of being absent, the urgency issue wouldn't bother me at all if it meant the urinary pain and sensitivity would just stop, it's like hell if you're a man because your urethra is longer and so more sensitive + much more pain! It's almost amazing to me, this is ridiculious, ugh. I was going to write my own sad diatrab like this one but she took the words right out of my mouth, I feel precisely the way she does and it fightens me. They're already getting angry where I work because I made a few minor errors when I was in termendous pain (which I'll never tell them about). I'll keep trying to live each day but even with depression for most of my life and being on Zoloft 3 years the pain, when it does come, it eclipses all that almost purely. I'm afraid of what I'll do if it were to reach a 5 (scale of 1-5) because that's incredible to me. Ugh, well I'll write more and keep posting, I can't believe no one but us takes this seriously it's obviously very disturbing, I feel for this OP :(

[Stella1609]

Starflight, I've seen a few of your posts, and I know you're really feeling alone right now. Have you tried checking on this site for an IC specialist in your area? I got the name of my second uro from here, and he was absolutely WONDERFUL. Very understanding, and willing to listen to me. It sounds like you've had some bad experiences with uros, but there ARE some good ones out there!

[insolidarity]

Hi- I feel like you do...watching everyone else live. I feel like IC is some terrible secret- and most of the people around me treat me like a hypochondriac because it is invisible. I find myself wishing I could let them feel the pain and try to get through one single day with the 60 trips to the bathroom.
Problem is_ I am a single mom of a special needs child, I take care of my mom and I teach full time....more than full time- I work 7 days a week. My job does not hire or retain teachers with health issues, we have to get screened to prove we are still healthy. I can not let them know I am in a flare or need medical attention....I am isolated enough without risking my job and my survival literally- because of a flare.
SO- does anyone balance working 60 hours a week, a family and a flare?
I am drinking low acid coffee, having a soda , and now smoking again- due to the stress! I know it is only making it worse- but I can not make it past the afternoon without caffeine as I am TOO TIIRED all the time and depressed as hell. I am thinking of abilify or provigil. There is no urologist where I live (I am on a tiny island in the Pacific) and I am skeptical of the qualify of healthcare. I can not fly home (it is 2 grand to get to the states)...so I need to inform myself and make an appointment and ask for what I need. Any suggestions- ? If I could get through the day without the soda and such, my flares should desist. And if I could stop feeling like the world will end each day...maybe I could get more done. I am forcing myself to live on pain pills (tramadol, gabapentin, prescription Ibuprofen with anti-inflammation, just started CYSTAPROTEk, eat prelief all day every day...)..about to start aloe vera if I can find a company who will send here. Any advice....
:cussing: