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Maine is a large State

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  • #16
    Hi Jill. I always said I would never take MJ but I'm ready now for sure. I have one cig and it sits there unused. I keep thinking I might be doing something unlawful. I did not have a Doctor tell me to use it. Until I do I'm a big sissy. I'd rather take it in a brownie or something that won't burn my throat. OMG I am so happy Dear Bob found something, anything that will bring him any relief at all. He sure has been through way too much and as we spoke about before it's a family disease. You are suffering right along with him. I think of you both every day. Hug, Ziggy


    • #17
      Where are you people???

      Come on, Mainers, we know you're out there! I think Zig, when we post, we should remind people to go to their state site. Where are you Kirsten??? How are you??? We need to stick together! And yes, the medical marijuana has helped Bob a lot, it is expensive and insurance does not cover, but we are allowed to grow a couple of plants (they take forever!) so that will be good. It does relax him and help him sleep, there are different strains for different problems i.e. pain, sleep, anxiety, etc. and they do what they are supposed to. And Bob is in a happy state when he gets to the point where he's had just enough, and can forgo a dose of oxy. Tough to relate to someone on another planet (I no can use the stuff, whacks me) but it's comical and worth it to see him have a few hours of relief. Would be nice to get to the point of no pain meds, but that's wishful thinking. Certainly nice to be legal and not have to worry about that aspect, and the procedure to get there was painless. Jill, wife of Bob



      • #18
        hi Mainers

        I live in old town. I developed ic in October, boy what a ride! Hi Jill, glad to hear about bobs success with mj. I am would love to hear more about it. I have pain and anxiety, but who wouldn't when you deal with ic. So happy something is working. This disease is exhausting!!! I have talked to kristen before, we have the same doc. I would love to change to a different one. The last time I saw him he was trying to sell me on his cosmetic line. He told me he could do hair removal and lighten some of my freckels. Um no thanks, I happen to like them. Crazy, I'm here for ic nothing else. Take care Mainers! Raising my water glass and toasting you all pain free days!
        Current Meds:
        IC Diet
        Elmiron 100mg 3x Daily
        Elavil 25mg at bedtime
        Atarax 25mg at bedtime
        Valium- when needed
        Long baths
        Playing with my 2 daughters, Julia 5 yrs & Natalee 2 yrs

        Me and my hubby~ my rock!

        Peanut #1

        Peanut #2


        • #19
          LauraLee, that is just insane. We knew a doctor like this at one time (emphasize at one time) back in Jersey, quack, quack. We were very impressed with Dr. Ellison down at PenBay, he has been real good to us, understands the travel issues, and confers by phone, but you of course need to see him. He'll probably want to do the cysto/hydro/biopsy to rule everything else out, but he was very gentle, Bob had no problems after. He does not over extend the bladder, and make sure you talk with him about it. He will talk with you about the interstim, but he does not do them, think he just has no answers for ICers, and that is a last resort. No thanks. Did ask him if it would help the pain, he said absolutely not, so he was honest, think he was just trying to help with the frequency issue as we have tried everything on the market. Can deal with the frequency if the pain would just go away. Yes, the medical MJ does help Bob, it is expensive though, but we are allowed to grow a few plants (the waiting is the hardest part). I don't touch it myself, but it is interesting to see Bob on one level where everything's funny and I don't get it. LOL. Your girls are adorable, wish you could feel better and be able to get out in this beautiful state and do things with them. Yes, it is a journey, you are just starting it, but would certainly advise you to FIND ANOTHER DOCTOR. If you do go to PenBay, ask for Dr. Ellison, you can get in within a week. You can find info about him online. Good luck to you, if you do see him, tell him we sent you. There is power in numbers, we need to stick together and get this nasty disease outfront and center!!! He would be an advocate. Stay in touch please! Jill, wife of Bob


          • #20
            Kirsten, really good to hear from you. Goodness, you are on a lot of meds! Is the Elmiron working for you at all, have you tried going without? Your oxycodone dose is still in baby stage, but sure doc wants to keep you low as you can tolerate. Bob is up to 90mg every 4-6 hours, plus fentanyl patch 100mcg every two days, so he is pretty much maxxed out. Methadone has been discussed, but we want to stay clear, too scary, way too scary. Too many people already know Bob is taking narcotics, we lock our doors now. The medical MJ helps him a lot, but we can't afford it, not covered, trying to grow a few which is allowed, and more for him because I don't touch it. Did you ever look at, Integr8? Heard there is another in Brewer area, but don't know much about it, these folks are smart not to plaster it all over the web. Know the pain meds don't help much, the patch and oxy combo seem to help Bob somewhat, but as you know, when that bladder fills, nothing is going to touch it. He is able to function inbetween with it, but is sleepy all the time. Hope you are maybe having a good day today, are you finding with all of the thunderstorms/low pressure areas scooting through that you feel more pain? Just curious, Bob can predict with pain. Take care, Jill wife of Bob


            • #21
              Hello Maine!
              Hope your still here! Can't believe we're it
              For the whole state! I live downeast
              Small town... My doctor treats several other
              Women for IC but does not believe in giving out
              Pain meds..I do live most of my life with no flares
              But oh boy when it's bad it's WICKED AWFUL
              I am almost bed ridden ... Wish I could find a pain med manager
              And wish we had a support group!
              Hope to hear from you & hope your day is pain free


              • #22
                I emailed you, but don't know if it went through. We are in Maine and close to downeast. Email me back at [email protected] so we can be in touch. We have much info for you. Jill, wife of Bob Hope you have a good day too, but this weather doesn't help much!


                • #23
                  Re: Maine is a large State

                  Hi I'm from York......I have suspected IC right now urgency, extreme frequency, amd incontinence frequency is 15-25 times per day and 1-5 per night. Been tested for nearly everything under the sun.....I have no pain, just discomfort from having to go to the bathroom and never feeling like I'm empty. I use Foley catheters and diapers. It seems to be working, though it isn't a ton of fun and it's not how "normal" people live......


                  • #24
                    Re: Sorry I just found this post..

                    Interesting to read your message. I had the interstim done Dec 2014. It worked for about two weeks. Kept changing programs and the darn thing never helped at all.. And like you, the lead wires had to be redirected. Kept trying different programs and nothing helped. FINALLY I SAID ENOUGH IS ENOUGH.
                    Had the darn thing removed. I was also worried about having it in my body. Wow...all that $$$ for nothing. Love having that thing out. Started Elmiron three months ago and it seems to be doing the trick. I also live in Maine.


                    • #25
                      Re: Sorry I just found this post..

                      One of my 5 urologist's wanted to do the interstim and after reading about it it sounded like having a Foley catheter inserted every week was a much better plan for me......not many guys would look forward to being cathed but it provides a welcome relief after a few days at work suffering without it.