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  • i think I've had it, for now anyway

    I've been suffering nonstop for all of March, this could be a 5-6 month IC, VV, and vulvodynia flare. I've had some in the past. I've been working (teacher) as much as I can, but I am afraid to say, that no matter how well I work smarter, not harder, this year, I am still not able to do all that I need to friends and family say, "can't you make it, there's just two more months?" In the past, I would have said yes, anything to keep me in good standing at my campus (i've been there 7 yrs in middle school with a great bunch of teachers, and taught HS in another district for 2 yrs before that), I would do anything to be there everyday, anything (***crying*** ) to get my bills paid and keep my house, get maintenance on my truck, and care for my pets even better than I care for myself. I do have parents who would be there for me, financially if I need, but they do not have the means to support me completely, and I would never want that. I want to work, but for the past month I just feel like I'm throwing in the towel. Some of you know a little more about my history...this school year got off to a really bad start last August, when I returned from my annual trip to visit a GF who lives in Mexico, 2 days before school started I got back, my live in fiance tried to kill me. I'll leave out important and all those unspeakable details, but obviously that was that, for our relationship. Had actually been seeing a therapist all summer to see if I could find a way to get him out of the house and me out of the relationship safely. Well, obviously my fears weren't something I imagined, I just wish my therapist and I had worked faster on finding a safety plan for me. SO here I am, never thought I would make it from August and now it's April! While I am glad he's gone, and my emotions more or less stabilized most of the time, with the help of family, friends, and my doctors, since this IC flare hit at the beginning of March, (it's a bad one) I am losing all desire to wash my work clothes, iron them, forget about a matching outfit for work, I'll wear whatever is clean as long as I am warm. Fact is, I got a great bunch of students this year, but they haven't gotten the best of me. If any of your children are my students, I am sorry.
    When I ran out of sick days and extended leave earlier in the year, I applied for FMLA and was approved based on my dr's dxs for panic attacks, anxiety, and history of PTSD. So I took a 2 week leave of absence and still have up to 12 weeks of working days of unpaid leave (with benefits). I probably now have a little over a month of FMLA leave left (FMLA protects you from being fired because of a health condition.) Now the IC has thrown me for a loop...I used to take max 1 tylenol3 a day, but I was recently referrred to a pain clinic and was given vicoden 7.5 and a muscle relaxer. These meds are working for my pain, but I can only take 1 Vic at a time because of the woozy side effects, and I can take 2 when I'm home and can just kick back. I'm optimistic that the side effects will go away with time, I hope! Because I only get really good relief when I take 2 tabs. I am afraid that my hunners
    ulcers may be coming back because I have not had disabling pain like this since I recovered from my hydro (nov 04) during which ulcers were burned off.
    I don't have disablity insurance, but I do have some money saved. I'm going to think about taking off work till summer starts and hopefully have my job available for me in the fall in my district. IF not there are several other districts to choose from that wouldn't be much farther of a drive. Whichever...if I have to leave my current district I hope it will be on good terms and if they don't want me back in the fall, then I hope at least that the will give me a good reference, since this is the first year that I have had so many traumas happening at once.
    I never did give my principal details about my condition, just the name of it and that it was a chronic pelvic pain issue and there may be times when I need someone to cover my class if I need to make a trip to the RR. I havne't had any problems with that. But I AM having problems now with the number of days I have been out, despite the FMLA.
    I am severely depressed, anxiety ridden, and now the IC flares. Give me a break!
    So I don't know what I'm going to do. Maybe talk to my principal tomorrow and human resources/insurance to see how this will affect my pay throughout the summer. If I can still get some pay, plus any kind of work that is less stressful, closer to home, for a while, my distorted mind thinks that a lengthy absence from teaching may do me some good and also give me some time to think about other career options.
    Life has really pushed me to the edge since last August, some of you know more details about what happened. I've done what I've always done, keep it together, try to put on that "happy--I'm normal face" but I am so exhausted from it all and now I'm deaing with IC again, and I just can't anymore. I am 100% beaten by life at this point, and just so tired, I kept that Im ok face on all thru the fall, didn't want anyone asking about what happend with the ex. And now on top of the emotional stuff, I am in PAIN, NEED TO PEE, MY BLADDER BURNS, back hurts, i CAN"T SIT COMFORTABLY, etc etc the usual.
    Well, I guess that's about it, if you read it all, thank you, I'm very independent and used to doing things on my own, and when things go beyond what I'm used to handling in my job and with my family and friends, taking care of the house (cleaning, what's that??) LOL,etc. I begin to feel very weak. I do have friends and family who care and who help me out when I need, but this is something I think I may have to do for myself. I don't think many aregoing to understand (not talking about you gals Thanks to all of you who took the time to read. I really don't need any responses, but of course they are welcome. Now, where to post this...???

  • #2

    Thank you for sharing all of that. I am in the process of getting my teacher certification and I am worried about things that you are currently going through.

    As far as a job in the summer, I currently tutor during the week. The sessions are scheduled around my schedule and it is great. Often I meet the individual at the library. You could do something similar to this as so many parents want their child to stay active in some aspect of school during the summer. I had a student one summer whose father wanted him to see some of the interesting aspects of math(the subject I tutor) so I got to do fun stuff with him that related to what he was learning but that he wouldn't see in the classroom and is was fun and very low stress.

    Honestly if you are in a position to take some time off to rest and get re-energized I think that would be a great idea. With the stress that started in your life last year it is no wonder you are in so much pain. Your body may be telling you it is time to take care of it. I know my body gives out on me if I ignore it for too long. It is close to doing that now.

    Please know that I am thinking about you!

    Lots of hugs,


    • #3
      I am so sorry you are having to go through all this. This disease does take a big biite out of our lives..I know you are really down right now, but you are a strong woman, some woman never get the courage to do what you did and get that mean man out of your life..I think you are right though, your body is asking for a break. I know mine was, so I took a leave of absense from work and I really dont want to go back. But I know I will have to pretty soon, but this little break has done my body good..

      I do believe all the stress you have been having to deal with has been a major set back with your IC, I know it has been for me..
      But like I said hun you are a very strong woman and you are doing things that most of us just couldnt imagine, so dont give up now keep fighting and there will be better days ahead

      ps If you need me I am here for you!

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

      Link to Patient Handbook:

      Diet Reference Sheet:

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #4
        I really wish I could help. Doesn't the school system have a disability plan in place? You really should qualify for that. Have you talked to your urologist about possibly making some changes in your medications? Have you tried elmiron? instillations? I'm searching my brain for some things that might possibly help you feel better. Many ICers do instillations at home to help keep symptoms under control.

        I would think your long record with your school would be adequate to renew your contract for the next school year. Hopefully you will be able to get some relaxing time during the summer months to give you a chance to recover.

        You've been through a horrible year. I can't imagine how frightening your experience was. But you've made it this far --- and you can't let him win.

        Sending gentle hugs and healing wishes,
        Stay safe

        Elmiron Eye Disease Information Center -
        Elmiron Eye Disease Fact Sheet (Downloadable) -

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help:


        Diet list:

        AUA Guidelines:

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Anyone who says something is foolproof hasn't met a determined fool


        • #5
          all I have to offer is someone who gets it. I have been in a flare since christmas eve. Yikes. I will pray this will pass quickly for you.

          IC diagnosed officially via cysto/urodynamics 1/26/07

          Grade II Endometriosis diagnosed via lap 12/11/07

          "Fall down seven times, Stand up eight."

          "Life is a tragedy for those who feel and a comedy for those who think."

          Current Treatments:
          Interstim Since 5/25/07!
          Birth Control


          • #6
            Dear Briza, I think maybe I am in a position to understand how you feel, more than most people. I haven't had the trauma with my significant other, but I have been in a flare for more than two years now, and this past October I finally fell apart, couldn't keep up anymore, and had to resign my job -- teaching in the University, which I loved a lot and had been doing for seven years. My department was completely unsympathetic and let me know that I would never be welcomed back.

            It was SUCH a hard decision to give up work, but I was overwhelmed. I had had a brutal time the summer before. I threw out my back and was down for four weeks, my uncle died at age 59 on my 40th birthday, I had to travel from NJ to New Mexico for my brother's wedding, so I was already at the breaking point when the semester started. I probably shouldn't have started, but I was in denial and kept thinking I could hold it all together, take care of my daughter who was only 11 at the time, teach my classes and supervise nine graduate students. By late October, I had to throw in the towel. SO bad to do that in mid-semester, and I still feel guilty about the disruption this must have caused for the 540 students enrolled in my various classes.

            Fortunately in NJ I was immediately eligible for short-term disability from the State, it doesn't matter if you had any insurance as long as you were a wage-earner. That lasted six months (last check will come this month), and then I had to make a really difficult decision about the future. I chose to apply for SSD.

            I know I am more fortunate in many ways, because my husband's salary supports us all easily, but it's not about the money. It's about giving up something so dear to me, so much a part of my identity, and "defining" myself as a disabled person. This is one of the hardest things I've ever done.

            So, the reason I'm telling you all this about me, is that in some ways I think we've been through some similar difficulties, and I want you to know I understand, as much as anyone can, what you've been through, and that I sympathize. I don't have the answer, no one does probably, but I understand the questions you are grappling with. At least, some of them.

            Since we started doing more frequent instills at home, I've been feeling much better IC-wise, but then my cousin died at age 40, I suddenly developed some kind of viral arthritis, and now my daughter has mono. The stress is making it very difficult to make progress. But I do think the instills are really important, and I hope you're able to get them soon.

            My sister lives in TX and works in a public college, and she has tried to explain this weird system they use instead of paying into SS. Frankly, she lost me halfway through, so I don't know what kind of benefits might be available to you.

            OK, I'm sorry this is so long, too long, but please feel free to PM me if you want to talk about anything, I'll be happy to give you my phone number.

            I'm so sorry for everything you're coping with. You are in my thoughts.
            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
            Wishing you happiness and good health, and all the best out of life.

            Peace, Carolyn

            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

            On the Beach with IC


            • #7
              I am learning more and more about the system over here in Texas and it is weird to say the least. I hope lightning hits before I start teaching so that I know exactly what to expect!

              I will keep my ears open as I am class with several people who are already teaching and the benefits come up often. If anything pops up I will let you know!


              • #8
                You should be able to do something part time to go along with the retirement fund --- maybe some tutoring?

                Stay safe

                Elmiron Eye Disease Information Center -
                Elmiron Eye Disease Fact Sheet (Downloadable) -

                Have you checked the ICN Shop?
                Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                Patient Help:


                Diet list:

                AUA Guidelines:

                I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                Anyone who says something is foolproof hasn't met a determined fool


                • #9

                  I am so sorry that things are so rough for you right now. But, I truly think the side effects of the new meds will lessen alot after you have been on them for a bit. Hopefully, that will make things easier for you. I was a Zombie when I started mine, but fortunately alot of that decreased with a bit of time.

                  I wish you lived closer so I could come over and try to cheer you up. I dont know how to help you from so far away, but I want to desparately! But, if you need me, or want to talk feel free to call me anytime day or night. I wish things were easier for you right now.

                  I dont know what to tell you about work. But, I can only say that I have no idea how you have managed this long. My heart goes out to all the ICers who are still working and cant rest when they need to. I will step up the prayers for you and continue to pray for you. I just wish I could do something else for you too.

                  But, please dont hesitate to call me whenever you want to talk. You have always been there for me, and I will be here for you too, if you will let me.

                  Love and hugs,


                  • #10
                    {{{{Briza}}}} I am so sorry you are facing all of this. It must feel very overwhelming. I hope you find some answers soon for all these big decisions you are faced with.

                    Diagnosed August 2001

                    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


                    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


                    • #11
                      I'm so sorry to hear you are struggling. I don't know if it will help, but I can tell you I understand. When I was first diagnosed, I crawled under the covers and don't think I left there for nearly three weeks! I'm completely serious about that. The depression and anxiety nearly did me in.

                      I did ok after that until this past year. I had a very tramatic pregnancy and second trimester miscarriage, my grandfather died and my mother-in-law was diagnosed with pancreatic cancer and passed away a few months later. The stress was horrible and pulled me out of remission and into a flare that I haven't felt the likes of since I was first diagnosed.

                      This last flare brought back all of the fear and anxiety in full force and I'm really trying to keep centered and have perspective. But, d@mn, it's hard!

                      Take care of yourself.


                      • #12
                        Hi Briza,
                        I'm so sorry for all you're going through--it does all add up. And this is the hardest time of year for us teachers. Every year around this time, I start feeling tired & with IC it's worse. Do look into the rescue instillations, ok? Honestly, I think they are the main reason I am not out on disability myself. There are days I wake up in flare & do a treatment, an hour later I can go to work & even have a nice ordinary day. If you have not tried them yet, they are really worth a try.

                        About the end of this school year. I don't know about for you, but for me in my district, once I run out of sick leave, I receive differential pay for up to 100 days. That means I get what is left over after the district pays the subsitute. You might look into that for the short term. Our union dues also include a short term disability plan, that is separate from long term state teachers disability / retirement & separate from the one I pay for privately. ?? I know Texas does not have teachers' unions, but is there anything similar through your district?

                        In the long run, you know with 9 years teaching experience, you could easily move into a district coaching position or resource teacher position that would be less stressful than the regular classroom. Something to consider for later also.

                        For now, maybe this spring (if you do decide to go out on leave for awhile) & this summer could be a time to work on healing. Look into instillations (I started them in the summer, made the experimenting less stressful), maybe check out physical therapy too. And then with the remaining time, read, do minor gardening & organizing at home. Get netflix & watch all the movies you haven't been able to. Basically, be very gentle with yourself & not have dozens of people pulling at you when you are already stressed & ill.

                        You have been there for me many times, Briza.
                        If you need anything, don't hesitate to PM me, ok?

                        Sending a hug,

                        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                        Source - Pinterest

                        Current treatments:
                        -IC diet
                        -Elavil 50mg at night
                        -Continuous use birth control pills (4-5 periods/year)
                        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                        -Pyridium if needed,
                        -Pain medicine at bedtime daily, as needed during the day several times per week
                        -Antibiotic when doing an instillation to prevent UTI
                        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                        -Dye Free Benadryl 50 mg at bedtime
                        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                        -Managing stress= VERY important!
                        -Fur therapy: Hugging the cat!


                        • #13
                          Hi Brizza,
                          I am so sorry that life seems to be really kicking you right now. I can empathize with you. I have been at the point where I have been at the end of my rope with this wretched disease, too. There was a point where I was denied insurance because of my IC. I had to go on TennCare just to get medical help (not something I wanted to do). The good thing that came out of that was that I found Dr. Ragi. She was definitely a miracle sent from God. She helped me so much. Unfortunatley, she has moved to Knoxville. I am now able to get insurance through my husband's job (yea!), but I am trying to find a new doctor (think this new one may be ok). Anyway, I was ready to throw in the towel when I had to do TennCare, but something good came out of it. I am praying that God will use this bad time for you to bring something good out of it. Hang in there and don't feel like you have to always have to put on a happy face here. I haven't written much on here, but just reading the posts have helped me so much. I am thankful for this site. The people on this site can defintitely relate to your pain and we all need someone who understands how awful IC can be. I have learned that when my body hurts with IC, it is not the time to "push through the pain". It needs time and rest to heal. I hope you have a better week and get some rest this summer.