Having a rotten day

[icnewlywed]

Today I met with my supervisor for my 180 day review. My IC has been at its worse for several months. I am having the interstim implant on Feb. 10th after trying everything else under the sun. I openly expressed to her my feelings that other's perceive me as exaggerating my symptoms and possibly not even sick. I gave her this website and told her to research IC and to please share with others who doubt that I am really sick. As if it is not bad enough to be sick day in and day out now I have to defend that I really am sick. I can't stand anyone who claims to be sick when they really aren't, because it makes it harder on those of us who have real illnesses. I am so scared we won't be able to make it with me only working part time or worse that I will eventually lose my job. I think my depression has hit an all time low today. I have only been sleeping an hour or 2 at time because of the feelings of urgency. I spend hours on end in the bathroom because of this. I would much rather work 7 days a week then sit at home in the condition I'm in. Sorry for throwing myself a pity party but all i can do is cry now and I just needed to vent to someone who would understand the true gravity of IC.

[SharonA]

I am so sorry you are having such a difficult time of it. I bet just knowing you were going in for your review added a lot of stress to your life. It would have for me. Then you add the upcoming surgery and your worrying about being able to keep working and you are dealing with a lot right now. Worrying about things can cause your bladder to work double time. Stress is my #1 trigger and when I get a stress flare (yes, I worry a lot about things, also), I might as well live in my bathroom.

Oh...About the pity party. We all are guests of honor at our own every once in a while. (((Hugs)))

[dverba]

Trust me, it makes me feel better to know I am not the only one going through these things and I am sure that is true of many others here. Some times you just need to vent and be heard! I do understand. Just remember you can not give up! Keep doing what you can and tell your self " this is ok for now! I am doing my best!" You are not alone in this, ever!:angel:

DeAnna

[CynthiaBW]

Sorry your having such a bad time with your IC. When I'm stressed and nervous
I can definitely feel it in my bladder. Believe me I know what it's like to not be
able to sleep because of frequency/urgency. I also understand what it's like
to not know if you can continue working. I had to start taking Lexapro to help
my anxiety and depression. It has helped a lot. I don't know if your religious
or not, but sometimes just getting out my bible and meditating on healing
scriptures has really helped me. I continue to pray everyday for a cure for IC.
I think it's great that you gave your employer a website on IC. I just don't think
people understand because IC is not a well -known illness.
I hope you feel better soon.
Beth

[sickofmybladder]

I can instantly tell a difference in my symptoms when I am in high stress mode - and it certainly seems that you have alot of stress at the moment. I truly hope that you feel better soon and recover from your surgery quickly.

I do understand how difficult it can be to "appear" to be healthy and ok - when really you are struggling greatly inside. Most of us - do a great job of "pretending" to be fine when we are not - some people will never understand and I have finally been able to accept that - but in the work environment (mine included) - it can be very difficult.

Do you have any short term disability coverage at your work? If so - you may be able to supplement your loss of income during your recovery with that.

[icnewlywed]

Wanted to post an update from my post last Friday. I received the worse news ever today. My interstim trial has been postponed from this Friday until the end of the month b/c the medtornic rep is on maternity leave. I had finally started to see hope and began to think I might even be able to keep my job. I had a horrible flare today right before I had to meet a client and her mother to take her to her psychiatris appt. I totally lost it and called my mother while she was at work in complete sobs. It doens't matter how old I get she is my rock and can make the end of the earth seem not that bad. She switched cars with me so I could have relief from her heated seats. She also told to call immeidately and take time off or work or reduce my schedule to barely nothing. She has offered to cover any expense my husband and I can't afford on one income. My husband kind of flipped when I told him I just couldn't do it anymore and needed to take the pressure of work off my plate until surgery. He agreed and has changed his schedule to 3 am - 2 pm 5 days a week. He'll recieve 4 hours with a 3rd shirft premium and receive time and a half for all his hours over 40. I feel quilty letting others take care of me and worry they both will over do themselves trying to help me make ends meet. I'm so thankful to have them in my life to swoop in on my days I feel lower than dirt and save my life. I feel conflicted though. Part is me relieved to not have to worry about work and part me feels guilty and hopeless. I want to go back in to remission. I want to function off percocet for one minute. I will say the cry I had on my mom's shoulder today felt good, I think I got alot I have been holding in the past few weeks. Thanks to all the support I receive on this site I know I will make it through it . I can't wait to be on the other end of this support giving though. I have no disability and used up all my paid time off in december when I took off b/c of my ic and having a bladder distention.

I told my husband I was holding one more pity party for myself after he went to bed tonight and then I'd literally and fiquratively pull myself off the floor. I love crafts and set up a station in the bathroom so I can crochet, work on my jewelry, or read to pass the time until the surgery..... I even thought about playing some caribean music and pretending I was on my honeymoon :smile tee


**I should add that since my 1st posting I've had a very open conversation with both my supervisors. Go to find out they thought I've just had a UTI all this time. I explained how IC although having common symptoms as a UTI is much worse. I also realized that they didn't understand the feelings of urgency could last for 18 hours with no relief. Leaving my incapable of even making it from my bathroom to the kitchen :toilet: Once we cleared the air and I gave them a letter from my doctor they have been much more willing to work with me and as long as I know when I return it may take a while to fill my case load back up to full time they are willing to work with me.

[kuntrygurl78]

Its so wonderful to hear that you are trying to make the best of your situation. I love how youve set up your bathroom!

Im also comforted to know that there are good supervisors out there. It sounds like yours are really kind and understanding. You might send them a thank you card after all of this is over. To find people like them is very rare. :angel:

[jameson77]

:hi:

Hey! Just wanted to stop by and show some support for one of my NC gals.

Things have been rough for me lately too, but i am seeing Dr. Evans in Kernersville on Monday...man, it feels like it has taken forever for this appointment to get here, but i have only had to wait 5 weeks to get in, which is great. I was just tired of seeing new Uros, who may or may not know how to take care of me. Unfortunately, i will be an out-of-network patient, but I know I must see this wonderful doctor.

I had a rough weekend myself, feeling so crappy, burning, back pain, frequency and then we had to host my hubby's co-workers for the Super Bowl at our house...whatever i did or took i could not get relief. We went to Wendy's for lunch and i lost it while sitting at our table. I just felt so horrible, and we've got fertility issues as well, and i looked over and saw a lady with a tiny baby....and hello, waterworks....in Wendy's. It just gets frustrating, this long diagnosis and treatment road we have, and some people not understanding, and thinking we just have UTI's. But, we have each other here to come to (thank God!) and i know now that i am not alone. I am so glad that you have a great Mom...mine is awesome too --- i just call her when i need support.

I hope you are doing well today...please keep us updated and know that you are not alone. Feel free to PM me if you like!!