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Help - Need to Hear from Friends Who Understand

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  • Help - Need to Hear from Friends Who Understand

    I have been in such dire pain even on pain meds for two days. Heating pad doesn't help, nothing, drinking tons of water, this terrible disease has once again stopped me from having any sort of a normal life. I was to go to dinner with friends last night, couldn't walk, and again tomorrow night, unless a complete turn around happens, I will miss getting together with my girlfriends from high school (Class of 1980). I have an appt. with my GP at 8:00 a.m. and it could be an infection, running low grade fever. Even my mother who says she understands says toughen up, you have kids to take care of (single mom). I sit here crying because I have been through a divorce and I have my own house now, and I want so bad to get outside and clean up the flower beds, need to mow, and I can't. I am just soooo tired of this, like all of us, I used to be a very outgoing person, doing and going all the time. Please send words of wisdom. You know, your best friends say they understand, but they really don't, only those of us that suffer this can truly understand.

  • #2
    I'm so sorry to hear that you are in so much pain. I know exactly what you are going through. My pain has been getting worse and worse. I wish I had some words of wisdom for you. I know how hard it is though. I work full time and have a house with four kids including a 2 year old. Hang in there though, hopefully it'll get better soon.

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3

      How sweet is this reply? I imagined being the recipient of Amy's post and it felt all warm and fuzzy. Amy, thank you for ALWAYS thinking of others - even when you are struggling yourself. You are always there writing such supportive posts to others, even during your rough times. Thank you for being you. ~vm

      Oh, Sweetie, we DO understand! I am having a pretty rough day here too, pain-wise, (fell down some stairs). My bladder is now joining the pain party that the rest of my body started. So, I literally feel your pain right now.
      But, you actually have it harder, since I am not a single Mom. (Even though I have felt like one lately, since my husband's been out of town so much!) But, he got back yesterday, and can at least take over looking after Collin now so I can focus on myself. But, you dont even get those breaks!

      I know our parents mean well when they say those things, but I truly believe they just dont understand how hurtful they are being. The truth is, that no matter HOW bad we hurt, our children ALWAYS come first with all of us. I know that you are no exception. If our kids need us, we always put their needs first, even in the depths of pain so horrific that most people cant phathom it. But, there is a difference in our children's NEEDS and our children's WANTS, and most of what they ask for when we are trying to rest and we are hurting, amounts to a whole bunch of WANTS. I am sure your kids are no different. It is actually GOOD for our kids to see that they are NOT the center of the universe and that other people's needs sometimes come first and others NEEDS always have to come before their WANTS. By teaching our children this, we are raising them to be considerate of others and unselfish. The last I checked, that is a GOOD thing!

      I am certain that you are meeting every one of their needs now, just as you always do. But, they may not get taken to the mall right now, or have their fav shirt ironed or their fav cookies baked. But, they are wearing clean clothers and have food to eat, even if it is just a bowl of cereal. And let me be the first to tell ya, THERE IS NOTHING WRONG WITH THAT!!! NOT only that, but EVERYTHING IS RIGHT WITH THAT!! That is what you should do! TAke care of their needs first, your needs second, and their wants are just going to have to wait until you feel better...(Just like YOUR want to's will. Like you WANT to work in the flowers and mow the yard, but you dont NEED to do that! )

      Right now, you need to be much kinder to yourself. You are actually a much better mother than you think. You are actually doing them a service (as well doing society a service), by teaching them to be considerate of others and that they wont die if they cant have everything they WANT right at that moment, and that sometimes satisfaction has to be delayed because someone's needs right now are more important than their desires!

      So, dont you DARE feel guilty about that! And if your Mom (or anyone else) wants to make you feel guilty, you just give her my number or tell her to pm me and talk to ME about it, and I will set them straight real quick!

      Now, you go rest, and let them take care of you tonite. I know your kids are old enough to bring you drinks, covers, magazines, rub your feet, brush your hair, etc. Now is a good time to start training them on how to be nurturing to sick people while they are spending all that time waiting around for what they want!

      Big hugs from your Ky. neighbor and buddy,
      Last edited by vm; 03-31-2007, 03:19 PM. Reason: typo


      • #4
        Amy, I just read your post and your reply, I just cried. You are so sweet. I am sorry you have had such a hard time lately. I am here for you too. We forget we are human first, then mothers. Thank you.


        • #5
          Originally posted by littlemyrn
          Amy, I just read your post and your reply, I just cried. You are so sweet. I am sorry you have had such a hard time lately. I am here for you too. We forget we are human first, then mothers. Thank you.

          I am glad that you logged back on tonite and could read it before you went to bed. I hated thinking you'd spend the whole nite feeling guilty for actually doing the right thing!

          Thank you for the kind words you sent to me too. You are ALWAYS here for me, and always have been whenever I needed you, just as you are for your kids. I am glad that you wrote and reached out for some support for a change. You dont do that often enough. I know the changes that have occured in your life lately cant have been easy for you. You need and deserve to have an outlet for that. Please post here, or pm or call me whenever you need someone. You dont have to carry the load by yourself. We all care about you and want to be here for you to support you thru everything. So please let us do it more!

          Hugs from your Northern neighbor,

          P.S. I still want to get together and meet up for lunch sometime when I am in your area for my Drs. appt. If you are still interested too, I'll let ya know when I am headed your way and maybe we can meet up for some bland food and good conversation. If you wanna bring your Mom along, I can shake my finger at her for ya!
          Last edited by ihurttoo; 03-29-2007, 02:26 PM. Reason: typo


          • #6



            • #7
              As a fellow ICer, you can only do your best. Life hands us challenges and we deal with it to the best of our ability even if our best may not be the "best" of others....

              My mom had MAJOR back surgery when I was 9yrs old and since then she has pretty much been disabled. Seeing a parent deal with a chronic illness only had positive impacts on my life. I'm now 19yrs old and have more compassion than my peers... I've also learned to be more independent which is a life skill everyone has to learn sooner or later. Don't worry about being an inadequate parent, your children will understand. As far as your mother, she probably thinks she understands this disease but I don't think anyone who doesn't suffer from it can truly understand the gravity and impact it has on all parts of your life regardless of whether you allow it.

              Just know that you're doing your best and at some point those who love you will realize what you are going through.
              current meds:
              cytotec 200mcg twice daily

              ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

              dx: hashimoto's thyroiditis 1998
              dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
              dx: endometriosis 2003
              dx: innapropriate sinus tacchicardia 2005

              meds tried but failed:
              elavil (6months)- severe tachycardia
              elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
              a bunch of others

              Me and my best friend's baby (also my Godson!)


              • #8
                Hi There!

                You're right, this is such a great place to come for support and wisdom. Perhaps I can't offer much wisdom, but at least I can offer support. Just because you're a mommy doesn't mean you have to drop everything and not take care of yourself. That's the most important part - taking care of yourself so that when your children need you, you can be there for them too, just like I'm sure they're there for you now.

                Maybe you can take some comfort in the fact that you get to see the doctor tomorrow? (I'm probably one of the only people in the world who gets excited about seeing the doc, but hey Dr. visits usually means less pain for me.)

                You must keep in mind that the pain will not be forever! Whenever I'm mid flare I keep reminding myself that yes, I'm miserable now, but I won't always feel like this. Granted, I'm nowhere near there, but we have to take little steps right?

                Either way, I send warm thoughts of getting better to you, and I hope the doctor visit proves useful tomorrow!!



                Just diagnosed w/PFD - Oh Boy!

                What I have tried: Elmiron, Lyrica, ,Methadone, Vicodin, Norco, Cystoprotek, imipramine, xanax, hydroxizine, trazadone, a bunch of anti-spasmotics and more I'm sure I can't remember.

                What I'm presently on:
                Noritriptyline 25 mg
                OxyContin 20 mg AM - 10 mg afternoon - 20 mg PM
                Zanaflex 2 mg at bedtime
                Percocet PRN for breakthrough
                Nasonex (allergies)
                Jolessa (b.c.)
                Physical Therapy 2x weekly

                Be my buddy?



                • #9
                  I'm SOO very sorry you are having a rough time! I do know how it feels and wish I had a magic wand to take away everyone's pain!! But you can't feel guilty and please don't push yourself to do any more than you can physically do, that will only worsen matters! The flower beds will still be there another day, and just because you are flaring doesn't mean you aren't still a great mother.

                  Hugs and Wishes for Pain FREE days!!,

         ~reducing plastic waste one bag at a time~

                  Facebook: Kara Kaiser
                  Twitter: Love4Earth

                  Me and my Guccigirl... she helps me through those painful hours!


                  • #10
                    im soo sorry your in pain. I had an awful month like this last summer when i had a miscarrage and needed a D&C. It too 2 months for my period to come back and i was in sooo much pain for a good 4-5 weeks it was awful. but finally my period did come and let me tell you i never looked forward to it so much before in my life!

                    an infection will cause a flare up and don't rule out a yeast IC symptoms first showed their ugly head when i got a nasty yeast infection....and once it went away i was soo upset that i was still in pain!
                    wife to Jeremy
                    mom to Emma (3-8-05)
                    and Natalie (7-23-07)

                    Meds i'm currently taking:
                    Lortab as needed for pain

                    Meds that did not help:
                    Detrol LA
                    Lexapro (caused urgency)
                    Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)


                    • #11
                      Wow it sounds like this flare or infection is really a doozy! I have an idea, although you said you went through divorce and are a single mom. I don't know what your resources are like, but perhaps a kid in the neighborhood could mow for you and you could pay him. It could at least take one thing off your mind. Hang in there. I hope your doctor is good to 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


                      • #12
                        I feel ya

                        Sorry you're in a flare. Try to hang on to the truth that you WILL feel better again. You've been through this before and have survived it. When you're in it, it's so hard to keep that in mind, because you don't know how long it's going to last.

                        Do you have a doc that can give you a rescue instillation? I don't know about these from experience, but I've heard of them. I'm newly diagnosed and I'm hoping that when I have my next flare, my doc will be able to help me through it.

                        It's a horrible feeling and very debilitating. Don't beat yourself up for having trouble keeping up with "stuff." You will when you're able.

                        Hope you feel better A.S.A.P. We're all pulling for ya.

                        Health History Past 10yrs :

                        Chronic Yeast Infections
                        Vaginal atrophy
                        Finally Diagnosed with IC (potassium test)
                        in February 2007 :woohoo:

                        Current Meds & Methods:

                        Elavil nightly for pain
                        Lyrica as needed for pain
                        IC Diet
                        Vagifem twice weekly


                        • #13
                          Single mom here that totally understands. My kids are older now, but I've had this disease for 9 years. I'm sorry to say that I still get little or no support from anyone in my family. I am on fentynl patches so feel pretty decent most days. I'm still in pain, but trying not to take any higher doses. I've been on all the narcotics, you name it, I've tried it.
                          Please don't feel guilty for feeling sick, it will eat you up. I've been there. If people don't get it well to heck with them. I know the pain this disease causes and it can be devastating. Even getting up to fix a piece of toast sometimes is just too much. My divorce was just final on the 26th of Feb so somewhat celebrating but still sick so no big joyful celebrations. I'm here if you need a shoulder. I wish you were in Florida I'd come help you out. I'm so sorry. I've been there. You'll be in my prayers.


                          • #14
                            Single mom here too. My mom is supportive, but I don't get any real help from her or anyone.


                            • #15
                              Thanks everybody for your kind words. I started to feel better on Friday. I do instills at home and even straight lidocaine didn't help, in fact I had an appt. with my GP for other issues on Friday, and he said he bet I wished I could just stick the needle straight into my bladder since the instills irritate everything else. I also have had shingles come up, and he said that could be why started to flare so bad, anyway, I got my back yard mowed, that is the part that grows so fast, and hopefully on Monday get the front mowed. It is small should only take me 10 min.

                              Again Thanks, I don't know what I would do without ya'll. The support is awesome.