IC, Outta Work & Uninsured!

[rabbitofseville]

Hello! I'm glad this group exists as I'm feeling mighty overwhelmed these days with my new diagnosis. A little about me and my history. I work in the film/tv field and have been out of work since November - right around the time of the writer's strike. We shut down production about a week BEFORE the strike but would still have had to shut down regardless with the strike. I also don't have health insurance - I've been without insurance for close to three years and it hasn't been a problem until now.

I first experienced symptoms with my bladder last January and thought I just had a UTI. Drank plenty of cranberry juice but when my symptoms didn't abate I went to a low cost ob/gyn clinic for a check up. They said I had a yeast infection and that once I treated that I'd be right as rain. I tested negative for a UTI. They didn't seem to think my issues of almost non-stop urgency and frequency were things to be worried about unless i was actually leaking urine which i wasn't.

The yeast medication did not help me with my urinary symptoms. So I went to see a gyno outside of the clinic. UTI test was again negative. All looked right as rain inside - she suggested I come back in during a bigger flare with my bladder and said I had sensitive skin in my vulva area telling me to use diaper rash cream and also nystatin 2x a day.

I suffered until June when my symptoms disappeared. It happened around the same time that I was taking antibiotics for a stubborn infection in my finger so i thought "well maybe i did have an infection in my bladder."

All was hunky dory until November. By November I was tired of using the Nystatin (which also has steriods in it), all felt good in my bladder and with my vulva area so I stopped using my cream. I also switched soaps. This was a very very bad idea. :bonk: My vulva skin flared up - hot, irritated and bright bright red. Soon after that my urinary symptoms returned. Frequency and urgency - feeling like i couldn't hold it and if i did have to hold it - this always exacerbated (sp?) my symptoms. I was also experiencing pain in the mornings - but mornings only. Anything touching near my bladder/stomach area would also make me feel the urgent need to urinate.

I went to the gyno - she was very concerned about the state of my vulva and cervix which were both highly irritated and sent out a urine culture, bacterial and yeast cultures for testing. UTI test was again negative. She believed I had bacterial vaginosis and prescribed an antibiotic cream called Cleocin to treat it. This did not help as it turned out I didnt' have BV, I had yeast. So she gave me Diflucan to take. This only proved to further irritate my bladder. Sex was also a HUGE irritant even though we both made sure to wash before and after, use Astroglide, urinate before and after - the last time I had sex produced my worst symptoms. It was the first time I believe I leaked urine as well. Walking was painful because i just felt the need to have to go so bad even if I had just gone.

I decided I had to take control of my health and stop putting off seeing a urologist even though i was worried about how to pay for it! The urologist - who was GREAT - saw me last week. He is an IC specialist which by the time I saw him is what I believed I had. He diagnosed IC and Pelvic Floor Dysfunction. He did an ultrasound on my kidneys and bladder and didn't charge me - the man is a saint and gave me samples for medication to take as well to further help reduce my costs. he did say i need a cytscopy with hydrotension (sp?) but without insurance there isn't anyway i can afford that expense.

I'm looking into insurance but other than the monthly cost my biggest issue seems to be that i have a pre-existing condition. most insurance companies have clauses where they can deny benefits for my IC and PFD for up to 12 months! Has anyone else had experience with this and insurance...????

Right now I am on Sanctura XR - i just started it today. can't tell yet if it is helping. I am also taking Prelief and ordered some Cysta-Q to take as well. I went food shopping today and used the list to pick out safe foods to eat but I know I will sorely miss chocolate & tomato sauce! Chocolate is such a HUGE comfort food for me - heck i try to go to Hershey PA every year for my birthday i'm such a chocoholic.

I have an opportunity for a job that would start on Monday but my Physical Therapist - who confirmed my PFD - seems to think it may worsen my condition. It is in NYC and I live in NJ. the hardest part of working in the city is the commute - i can never tell if my bus will take an hour or two hours - there is no bathroom and no stopping - especially if you are stuck in the lincoln tunnel! Also in about four weeks, this job will require me to be on set for approx 60+ hrs a week (not incld commuting time) - i'm worried about having my IC under control to be able to handle this type of work load - does anyone else have experience with this? On set there sint' always ready access to a bathroom or the ability to leave immediatley if they are in the middle of filming. I do have the option of doing some part-time work from home but it wouldn't turn full time for another three months.

As I said i'm feeling overwhelmed and looking for some shoulders to lean on and some advice. If you think you need more details before you can safely advise me, i welcome questions.

Also my PT thinks I need to see a diff gyno - which i agree with - i'm fairly certain there are other issues in that area that have not been properly addressed - like why i keep getting yeast infections every 3-6 months!

Anyway - thanks for listening and i look forward to your comments! =)

[CaliAnn]

I wanted to welcome you to the boards. There are a lot of great ppl on here and when they can, help out tremendously - even if they can't answer your questions, someone will always pipe in to say "hey - I'm here and listening"

A couple of things you can try that are low-cost, no cost to help you through until you can get insurance:

1. Elimination diet - please read up on the diet, many of us are affected by what we eat. If you can identify triggers, you can save yourself a lot of pain.

2. Heating pad/water bottle: lots of ppl with IC are helped with heating pad/waterbottle.

3. Drink plenty of water: Make sure you are getting enough water (not too much though) - keeping the bladder flushed helps reduce irritants in the bladder


I"m sure there are lots of other self-help strategies you can try, but those were the first ones I thought of.

Please let us know how you are doing - and again - welcome :)

[Bea]

first welcome.. second.. I am so sorry you are dealing with this.. it is hard when you are first diagnosed, and even harder not to have insurance..

I too, live with my heating pad, and lots and lots of warm baths.. especially for PFD.. sometimes that is the only thing that gives me a little bit of relief...

as for the city.. omg.. I was going there once to see a gastro and p'd like ten times before i got on the train.. atleast with the train, I new it wouldn't be more than an hour to get there.. I was always too scared to take the bus.. then while on the train, I would have to take meds to help me through the pain of going in.. and just prayed to be able to hold it in.. I feel for you.. will your new job offer benefits.

also, was wondering where from nj you are, and what specialists you saw

[SharonA]

:welcome: to the ICN...:)

It really is a lot to think about right now, isn't it. It can be a bit overwhelming at first, but I promise you it does get easier. You learn what works for you and what doesn't.

I also want to tell you that there is hope and there is help. Spend some time in the Patient Handbook available on this site. You can find a link for it on the ICN Home Page. You will find that there are many meds/treatments that can help with the symptoms and lots of self help strategies.

One thing that I will suggest right now is those stick on heating pads that you can buy almost everywhere. They do work to help comfort that sore bladder and last for a long time. This might help with those long hours on the set and that bus ride.

Many of us find the bounce of an automobile to be hard on the bladder, so you can find a very good cushion on this site in the ICNShop.

For those times when the bladder just won't behave, you can use an OTC analgesic for the bladder. This will help numb the bladder. You can find them in a drug store by the name Azo or generic pyridium. This med will turn your urine orange and stain everything it touches, but I have learned to wear a panit liner to keep it off my panties. I have also learned to gently dab myself after urinating with toilet paper to remove the residual urine off of me.

I don't know what to tell you about the job you are talking about, but I do know that once you find the right combination of meds/treatments, it is possible to work full time and live a very happy and fulfilling life.

:) :) :)

[Cadyfatcat]

I'm sorry you are in this situation with insurance. I found myself on a similar one when I was kicked of my father's family plan after finishing college. I fortunately found out that there was legislation that provided the company must renew my individual membership for one and a half years if I elected to renew it, so I did.

[rabbitofseville]

thanks to everyone for your responses and advice! =)

i'm still trying to figure out my work situation on the movie - hopeful to have an answer either way by the middle of next week so i know how next to proceed. on most sets you are usually standing for many many hours on end which i find extremely difficult and painful to do when my symptoms are in full tilt. i long to sit on those days even though sitting isn't completely comfortable either.

my bf kindly bought me one of the chair cushions that should be arriving sometime next week - hopeful that helps during commutes and just sitting at home or riding in the car! our trip to hershey in december was not fun as the car ride and seatbelt just made me so uncomfortable - i'm sure doing nothing but having chocolate all wknd didn't help either!

I live in Bergen County NJ but not near any train line - also my hours - when i am working - tend to be all over the map. especially during filming. I may start out waking up at 4A to be on set by 6:30/7A and ending the week having to be at work by 2P and not getting home till 3A or later. this wacky schedule usually means 5 hours of sleep a night, eating whatever craft service provides, or on those really early or late days having to drive out to Jersey City, park and take the Path train into the city since the bus doesn't run 24 hrs. I've done it before but the last time i worked so intensively on a set - my first bout with what i now know is IC cropped up right after we wrapped filming. Seems my body is not cooperating with my choice of a career!

also my line of work doesn't offer health insurance - i'm considered a freelancer. i could join the freelancers union in NY(which is surprisingly free) and they actually don't have a pre-existing condition clause on their policies with Empire Blue Cross (WHOO!) BUT the cost of their policies is about $240-380 a month and that i just can't afford right now. even when i go back to work, i'll be living paycheck to paycheck.

I seem to be feeling a bit better as the week progresses - eating the special diet - it is hard with cravings as I normally have a cup of chocolate milk each nite and my body looks for that sugar fix! i haven't had any issues with the sanctura and it seems to be helping - also drinking lots of water and treating myself to chamomille (sp?) tea with my dinner. my 2nd appt with my PT is next Thursday - looking forward to her ideas on what i can do to help relax my muscles (other than not crossing my legs to try to stave off the urgency/frequency cycle)

my doc gave me some urelle to take on an as needed basis but it makes me sooooo sleepy! pyridium, sadly, didn't do anything to help my symptoms.