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Worried about my pain mgmt when I move!!

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  • Worried about my pain mgmt when I move!!

    Well the move is coming up on Tuesday!:woohoo: Most of you know my husband has been there for several months and this has been very hard, being seperated from him. I just want to get there so badly. I spent a few weeks there in January and it was wonderful. Such a different pace of life than here. And in the area we are living in Hawaii, health food is HUGE so there is little cafe that serves organic, non acid tea that didnt hurt my bladder at all. I would ride my bike there in the morning and sit with my book for awhile, reading and relaxing. It was pretty nice.
    Anyway, I am really worried about my pain mgmt. I have talked to the 2 pain mgmt docs on the island and one seems promising. I guess a drug called ICE??? is really bad there. I think it is some form of crank or something. But anyway, doctors are leary of giving pain meds b/c of the huge drug problem. BUt my current doc is going to write a letter for me to give to him.
    And guess what? My current pain doc is going to write my scripts and my mom is going to pick them up, fill them and mail them to me. I know he isnt supposed to do that but he was more than willing to. Now that I am all stable, he doesnt want me to have to go off everything. I will most likely fly home every 2-3 months to see him and also my family. If things dont go well with the new pain mgmt doc.
    It is SOOO scary trying to get restablished with a new pain doc. I have all those fears again, will he believe me, will he degrade me, will he refuse treatment?? I just hate that we have to go through this.
    Plus, I have been truly blessed with the doc I have. He is the kindest doctor on this planet. he told me he thinks of my situation almost every day and it breaks his heart I have to go through this. He never ever makes me feel stupid or like a liar. He has never drug tested me or counted my pills.There have been a couple times i have had really bad pain and he will let me take extra b/r medication. He is just a nice man. I think if we met in another situation, my husband and I would have been friends with him. We have many of the same political feelings and we both love history and the outdoors.
    Anyway, I am trying not to panic. I just dont know how realistic it is to expect my mom to have to go through what I go through with getting the script, filling it and overnighting it to me. I just dont know.
    Thanks for reading this long book!
    Sarah
    Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

  • #2
    I'm thrilled that you are moving to be with your husband and things are looking up in that part of your life!! I know you've had a very hard time lately. I know what you mean about worrying how a new doctor will treat you. I get that nervous feeling every time I have to see someone new. How cool is it that your current pain doctor is willing to keep writing your rx's? That has to be a huge load off of your mind. So you can go into the appt with the new doctor without as much apprehension as you would if you wouldn't continue getting the pain meds from your current doctor.

    I hope everything works out for you!!!
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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    • #3
      So Excited for YOU!

      Sarah,

      I'm so excited for your upcoming move to Hawaii! It will be so nice once you are there and settled. I'm so glad your current pain management doctor is willing to work with you and your Mom. That will be very helpful. I am praying that you find a new pain doc on the Island that treats you with the respect that your current doc is giving you. Maybe there will be a special one waiting for you when you get there.

      HUGS!

      Kara
      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

      I also have some journals of my journeys, past and some present at:
      http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

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      • #4
        Sarah,

        I know you have had such a rough time lately, and I too am overjoyed that you are about to join your husband in beautiful Hawaii! I am so jealous! It is going to be gorgeous there!!

        I think it is wonderful that your Saint of a Dr. is going to do that for you. What a great man! I hope and pray that you find someone just as compassionate near your new home.

        Hugs,
        Amy

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        • #5
          Sarah...I am so glad the move is almost upon you. I know you are looking forward to be with Hubby, once again. I hope the move is stress free for you.

          BTW...Once you are settled in, would you please send some of that "Aloha" spirit this way.
          Sharon

          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

          Where I can be found most days.



          Link to the ICN Patient Handbook:
          http://www.ic-network.com/handbook/

          Link to the IC Diet:
          http://www.ic-network.com/diet/


          IC 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.

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          • #6
            I keep saying if I were to win the lottery, the first thing I would do is to head for Hawaii! I totally love it there.

            Hopefully the pain management doc there will be willing to help --- at least you have an alternative if he doesn't.

            I'm also jealous!

            Huuuugs,
            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            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: http://www.ic-network.com/patientlinks.html

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            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            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.
            [3MG]

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

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            • #7
              Hey, my door is always open! Anyone can come visit me, lol!
              Yes I was shocked when my pain doctor offered to do that. The cool thing is that I still have insurance through my parents business because I do their financial statements and some consulting work for them. I get a paycheck and the health insurance, so if anyone were to look in to it, I think it would be okay.
              The one thing I feel bad about is my mom having to go through what we go through with picking up the scipts and filling them. But she has told me numerous times that she is more than willing to do it. Plus, my doctor is going to write the scripts 5 days early every time so that I can hopefully get them by the time I am out of my meds. I do worry about that, I dont want to go through withdrawals ever again.
              I cant wait to be with my hubby and my dogs again. I thought I would just kinda pick up my life after he left because I didnt want to live there but then I realized that I just couldnt make a life without him. I figured that we will make it work somehow. We DO have a really good marriage and I think I forgot that with all this Hawaii stuff. The only reason I didnt want to live there is my family but I am going to try really hard to keep in touch. It is a lot different from here.
              Plus, being from California, it is actually cheaper to live in Hawaii than here. California is insanely expensive.
              Sarah
              Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

              Comment


              • #8
                Sarah:
                So happy for you! glad you have a doctor who would do that, not many would. What a wonderful Mom you have for doing this for you. ( I don't think my mom would do this for me. -- Maybe my Dad would as even though he really doesn't understand my illness, he knows that I am sick and he would do anything for me to get better.)
                Hope your offer is always open? Who knows, you might have a houseful of company one of these days!!
                Good luck to you and hubby.
                When are you leaving?

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                • #9
                  Instead of your mom picking up your Rx's, filling them, and then mailing your pain meds to you, she could just mail the Rx's to you. I would make sure that a local pharmacy stocks your pain meds before you do that though. I don't know if you know, but it is illegal to mail controlled substances through the United States Postal Service (USPS). Your mom would have to mail you meds to you by FedEx or UPS. I had a long conversation with the Drug Enforcement Agency (DEA) a couple of weeks ago after my mail out pharmacy sent my ADHD meds through the USPS. The DEA ended up calling my mail out pharmacy to tell them that they were receiving a warning for mailing controlled substances illegally.

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                  • #10
                    I'm so happy you're going to be going to Hawaii to be with hubby... and happy that your PM doc is going to help you out!

                    When I moved, I had a horrible time with finding pain management and my husband had to carry me to the ER because I was in such severe withdrawal and so dehydrated I was starting to become delirious. He was so angry he screamed at the ER doc and managed to get me my medication back until I could see my new uro and pain doc a month later (you know how you always have to wait, wait, wait for appointments *sigh*)

                    Anyway, I would not wish that on ANYONE and I am so happy to hear you will never have to deal with it.
                    ****
                    Jen

                    *Diagnosed with severe IC in 2004
                    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                    **I am not a medical authority nor do I offer definitive medical advice. 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.

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                    • #11
                      Ohhh......Hawaii! I'm so jealous! LOL

                      I really HOPE you have a super doctor there! And its' great that your current doctor will help with the transition!

                      Lotsa love,
                      Kara
                      Hugs and Wishes for Pain FREE days!!,
                      Kara


                      www.loveforearth.net ~reducing plastic waste one bag at a time~

                      Facebook: Kara Kaiser
                      Twitter: Love4Earth

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

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                      • #12
                        Well the scripts cant be mailed to me because they cant be written by a doc licensed in CA and filled in Hawaii. I didnt know it was illegal to send meds through the mail, I do it all the time. I have for over 6 years. Trust me, I am not doubting you I am just lucky I didnt get caught! How did they know what was in there? I guess I will have to set something up with Fedex or something.
                        Jen- your story was one of the ones I thought of when I was thinking of moving. I know you left a wonderful doctor behind and that is always so hard. My dr. right moved awhile ago and I was lucky to find the one I did.
                        You know it is funny because I am always telling everyone they can come visit but I bet no one will. We have a guest house and everything but no one, and I mean no one visits my inlaws except us. I mean before we were moving there. But I would be more than happy to have my IC friends come see me. It is so truly beautiful and peaceful in Hilo(which is the name of the town I moving to). It is on the big island, Hawaii.
                        My mom is the sweetest, most supportive, wonderful human being on this planet. There truly are very few people like her. I am so very lucky to have her. She has "adopted" most of my friends as their mother because they all love her so much.
                        Thank you all for your support! I am pretty excited. Most of my fear left when my house was sold and i moved in with my mom, lol! Not that there is anything wrong with living with her, she is great , it just isnt the same when you are a married woman, used to your own house.Plus, her husband and I are opposite political parties and I am a major politics freak, so it can get heated sometimes, lol!
                        Sarah
                        Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

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                        • #13
                          Happy for You!

                          Sarah- I am so glad that at least you know your pain will be covered--moving all by itself is stressfull enough! I too, have a pain mgmt doctor who is as kind and sympathetic as yours is--it is truly a blessing and after SO many years of being looked at like I was from another planet, one I will never take for granted!!! Good luck in your new home---Malone

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                          • #14
                            Do you have access to a mail out pharmacy through your health insurance company? I have federal blue cross blue shield and I can get up to a 90-day supply for any of my meds (even BOTOX as I recently found out) shipped to me for only $35. Mail out pharmacies can get permission to ship your meds through USPS as long as they use delivery confirmation. By using a mail-out pharmacy, even though you live in Hawaii and your doc is in California, you can get your meds sent to you without having to pay for FedEX or UPS to deliver them.

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