Worried!!!!!!

[dawnmarieR]

Hello!!!!!! Here I am I get comfort from listening to others, feeling like I am not the only one. I was to go and have a treeatment today, but canceled. I am so sore I could cry. Sometimes I just do not know what to do. It is so hard for me to work. Like I said I am a dental asst, I have patients all day, it is so hard to sit. I fear going to work......I mean are you able to quit working because of this? Good old x-mas is coming, and I even fear getting in the car to drive 30 minutes to a party. Thank you to everyone that said to try nioxin. My hair is falling out bad. Someone said there is a book I try to read, does anyone know the name of it! Thank you!!!

[Briza]

Maybe this is the link to the book? http://www.ic-network.com/handbook

What treatment did you cancel?

There are some who have to stop working, but there are many who do continue working. I had to, for income and insurance purposes, I'm sure you understand. I'm a teacher, and there were many days when I didn't think I would make it through the day, many days that I should have stayed home, and many days that I didn't make it to work in the past couple of years and felt guilty for staying home. It's so hard... you want to be there and do the best you can at your job. Hang in there. I never thought the pain would end, but it did!

[dawnmarieR]

Thank you for your reply... I think sometimes it is just good to vent, and it is nice to do it to people who know what I am talking about. I should have went in and had my dmso treatment today. I know I should have but I am just so sore everywhere. I guess I have to be honest. My husband and I had sex, and ever since...pain!!!! I shall say I am at my witts end. Don't your life should begin at thirty?? Well at least there will be a new year starting soon. How are you? And can I ask what you take? How long have you had IC? I know what you mean about the work thing, I have been working for my Docter for nine years, he is understanding, but I still feel bad. I also have to ask what is elavil?

[Briza]

I have not had any instill treatments. Did you have one recently and that is why you are so sore?
I started having symptoms a little over two years ago, two bad flares 4-5 months long, with a 3 month remission in between, each with lots of bad pelvic pain, vulvodynia, and all the other symptoms. I was diagnosed about a year ago and have been managing and getting better with diet, Elavil, and Pyridium. Elavil is an antidepressant that is prescribed at low doses for nerve pain associated with IC and vulvodynia. I recently stopped taking it to see if I can get by without it.
Limiting sex :( has also made a big difference.
I was prescribed Tylenol 3 when the pain was unbearable. Without it, I would not have been able to continue working.

[tigger_gal]

hi there.. welcome to the boards... there are alot of us that have had to stop working, and a lot of us that are on ssd.. I am glad you found us..
I sent you a pm ;)

[ICNDonna]

Most people with IC do find treatments that work well and most are able to work. I was diagnosed in 1975 and worked full time until I retired early when my husband was able to retire. We are still very active.

Have you read the information in the Patient Handbook? There's a great deal of helpful data there, including the IC diet. If you aren't on an IC diet, I suggest you begin immediately. That single step can make a huge difference in how you feel.

Sending warm healing thoughts,
Donna

[jax]

i work in a pharmacy and i have to stand all day long and the stress on my bladder can get aweful and to top it off, my abdomen swells and my coworkers keep asking if i'm pregnant! i tried telling my boss about it, i mean he knows what's been going on because i've had it now for 4 months (although not confirmed, hopefully the 21st) but i get the feeling that he doesn't care anymore. i asked to go home early last week because i was in BAD pain, blood in my urine and everything, and he said that if i asked him one more time it would be no. well, it's an hour before i get off anyways and i ask him and he yells at me in front of everyone, "you asked again and now the answers NO!" i started crying...it was aweful. i hate being "sick" and in pain all the time. i'm a senior in college and this is my last semester and i honestly don't know how i've made it this far. IC is so painful and people who don't have it just don't understand how you can be in pain ALL the time...they get tired of hearing it and think that you are just making it up after a while. don't worry though, things will get better hopefully.

[dawnmarieR]

Thank you everybody! What is ssd? I thought about not working but, do not think i could afford it. Yes I know what you mean by no sex. My last instill was three weeks ago. The last one hurt really bad. Thank you again

[Debgail]

((((((((Jax))))))

I am so sorry your boss treated you that way. There is no excuse for the way he treated you. Maybe when he is in a good mood you could slip him a Pamphlet or print off some info from the icn about ic......tell him you really care about your job, and you also care about what is going on with you, and you would like him to understand what ic is....and maybe reconfirm your dedication to your job and encourage him to look at your info when he has time. Who knows, maybe he will read it and realize what a jerk he has been.

I am a hairdresser and I know how hard it is to stand on your feet. I have a stool that alot of times I cut hair with or even leaning against makes a diff at the end of the day. Maybe you could try one behind the counter??

Anyway, Please know that I was thinking of you and hope that you are feeling better with your ic soon.

Warm Hugs,
Debbie

[jax]

thank you so much for your support...i don't know what to do about my boss. i am seriously like so afraid of losing my job over this because i have been so short tempered and irritable...i just feel like no one understands what i'm going through and they don't see how hard i'm trying to make it. i try so hard at my work, i seriously do so much more than everyone else...they all sit around and talk while i'm helping customers, filing, or taking out the trash because no one else wants to do it. but i do it because i like my job and i want to do well and because i couldn't make it otherwise, i have too many bills since this all started. i mean i've paid over $500 in copays since august! and i only make like 700 a month and ugh...i'm frustrated and stressed out...i just want to cry. thanks for your support though.

jax

[mary124]

Hi and welcome to the boards. I work full time ( have to for the income and insurance) I have had some wonderful bosses (and some not so wonderful bosses!!) between my IC and my other health problems. There are days that I think I can't make it to work, but I do, (I have an office job sit most of the day - have my heating pad with me when I need it).

[dawnmarieR]

I have heard people say they are on ssd what the heck is that? X-mas is near so I hope everyone is calm and feeling better for them.

[Katrina]

:welcome: to the ICN fellow Wisconisnite. SSD Social Security Disability. Yes, quite a few patients with IC are unable to work for a period of time. Most do find a treatment that works for them though. I am on SSD. Many people with IC flare from sex. You should check out the sex and romance board here...Jen has a list of ideas to make sex easier...it should be the first thread at that board. What type of installtions are you doing? Feel free to contact me any time....I will private message you with some info. :grouphug:
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562e this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

[kkwhitney]

I work in the toy department at Wal-mart and let me tell ya sometimes it gets really hard to go to work. Especially right now. Just two weeks ago I had a really bad flare and had to take 5 days off of work to recover. There are days when I can't even climb a ladder at work let alone lift a box of frieght. But like many others I am determined to work through this. I think I would go more crazy staying at home. I hope that you find comfort soon and know that their great people hear to listen when you need to vent. They have really helped me to cope.

[clover26]

(((((JAX)))))))),

I too am a senior in college and it's tough to sit through classes w/ the pain. There is no excuse for how your boss treated you. I understand how it is when people get tired of hearing it, like we're not tired of feeling it!! My parents finally understand it after 20 years but it took a while. I was in remission for ten years before I got a UTI and now it's back. Don't worry, your life will not always be this stressful. Take Care.

[Babs RN]

Jax,
First, congrats on making it to your last semester. Your boss needs to quit acting like a 12 year old. Jeepers. Could he have been anymore inappropriate?

Hugs,
Barb :grouphug:

[poetgirl]

Jax,

Congratulations on making it through school -- as someone who slogged through school part-time for 8 years (and just finally graduated!) I know how difficult it can be to juggle school, work and IC. You are to be commended for hanging in there! Your boss, however, is a jerk. Would it be possible to get a note from your doctor stating your medical condition and that you may require breaks or other modifications (chair to sit in, for example) to help you get through the shift and manage your discomfort?

One thing I recommend, especially if you are experiencing bladder pain/spasms, is to buy the Thermacare patches for the abdomen (they advertise it for menstrual pain relief) and put one on before your work shift. It may help relax your bladder and soothe some of the discomfort. Good luck!