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  • Blew up at the pharmacy

    Okay, so I'm taking a trip next week by plane. Thought it would be better to mail my instillation supplies ahead rather than going through airport security with bottles & syringes or risking lost luggage with my meds inside.

    So, I called the pharmacy last week about getting 2 of the 250ml bottles of sterile water instead of the 500ml bottle, so I'll have enough to use here & enough to send sealed. They said "no problem". Well, it's now Tuesday & I leave in a week, so I called again. Here's how the conversation started.

    Pharmacy: "Oh, it's on back order."
    Me: "When will it come in?
    Pharmacy: "I don't know."
    Me: "Ok, when will you know when it'll come in?"
    Pharmacy: "I won't know that."
    Me getting mad now: "That's not a reasonable answer for someone's medical supplies. That wouldn't even be a good answer if I was trying to buy a sweater. A better answer would be 'I'll call the company & find out & call you back by tomorrow."

    So, she calls me back 10 minutes later: "It'll take about a month."
    Me: "Okay, so that won't work. Could you please send me two of the 500ml bottles?"
    Pharmacy: "You have no refills remaining, I can't fill your prescription now."

    At this point, I lost it & screamed at her that I don't know what's happened in their pharmacy in the last 3 months, but that they've screwed up 3 out of the last 3 orders, that I'm extremely frustrated because I depend on them for medicines that reduce my pain to manageable, that they should have called me LAST WEEK about the no-refills, that they should have called me LAST WEEK about the back order, that I wouldn't even know any of this now if I hadn't called them to check up on THEIR JOB, and that I'd be fired if I was as indifferent at my job as they are at theirs.

    Then I had to call my doctor's office and BEG on the answering machine (because God knows I never reach a human there) to PLEASE expedite the refill and yes, I know they require 3 days notice on no-refills, but that will bring us to Friday afternoon & at that point I may not even receive the water (it has to be mailed to me, my local pharmacy doesn't carry it) before I have to get on the plane.

    I don't know if it was my hysteria on the nurse's answering machine, the pharmacy pulled some strings or just plain luck, but the nurse did actually answer the phone for the pharmacy & took care of the no-refills.

    So, I'll likely get the sterile water too late to FedEx because my friends will be out of town next week before I arrive, but hopefully I'll get through security okay.

    AAAAAGGGHHH. I cried for a half hour over this when it was done.
    I HATE IC. I HATE THAT IT MAKES ME DEPENDENT ON OTHER PEOPLE. I HATE THAT I HAVE TO BE SCARED MY MEDS WON'T GET THROUGH SECURITY & I'LL BE LEFT SICK THROUGH THE TRIP AND THEN HAVE PROBLEMS GETTING REFILLS BECAUSE I "JUST FILLED THAT PRESCRIPTION".

    AND EVERYONE ACTS LIKE IT'S NO BIG DEAL AND I'M CRAZY. "Well, it should go through security." (I hope so) "Well, if you mail it & it sits outside their house, maybe a friend of theirs can pick it up." (And hopefully it won't be stolen or damaged) "Well, just check it in your luggage." (And maybe it won't get broken or maybe my luggage will even not get lost).

    Yeah and all of that depends on other people not screwing it up. And I've just seen how well trying to be proactive works. That's what's most frustrating, I called a WEEK ago on this trying NOT to have a drama.

    Bleep**!*x**@!!
    Kadi

    -------------------------------------------------------------
    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!

  • #2
    You have my sympathies! What a nightmare. I cancelled our family trip to Florida..we were leaving Thursday but I am just too nervous to travel.

    <<<<<<<<<<<Hugs>>>>>>>>>>>

    Hang in there hun..I hate the pharmacies. I go to a local owned pharm since every chain pharm seems to be so insensitive to our needs! I also cannot stand that you can never talk to anyone at the DR's office. It's maddening!

    Hang in there!
    Mimi~

    Currently battling:
    Migraines
    IC
    Panic attacks/Anxiety Disorder


    Current Treatments:
    Pain Meds and Anxiety Meds
    Gentle Physical Therapy
    Yoga
    Heating Pad~my best friend
    Lots of hot baths w/ Epsom Salts & Baking Soda
    Tens Unit
    Prayer

    Comment


    • #3
      Ugh, even more problem now. Called the TSA (airport security) & they said that since the 500cc bottle of sterile water is too big (more than 3oz), the prescription label isn't enough, I need a letter of "medical necessity". So, I just called the doctor's office & left a message begging the nurse to send me that. And I guess if I don't have what I need by Monday, I might cancel the trip. Travelling without the instillations is just not a good idea.
      Kadi

      -------------------------------------------------------------
      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!

      Comment


      • #4
        I'm so sorry. I can totally understand every aspect of your post. I hate being dependent on so many different people for my medications and have been through similar foul ups by different pharmacies, including my new mail order program.

        Nothing about this disease is easy....nothing!

        I really hope that everything turns out ok for you!

        Hugs, Sandy
        *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.

        Comment


        • #5
          Okay, now I'm really stressed. I called my friend, she wasn't home. Her husband was & told me that they will be flying home from a trip the same day I'll arrive, but "there's no problem because they'll get in at noon & you won't get in til 4:00". Okay, & if they're delayed? Then I'm sitting in an airport. I can't eat anything in places like that. I can't even drink the #@!! water because it's usually Dasani.

          Maybe I should just cancel the trip.
          Kadi

          -------------------------------------------------------------
          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!

          Comment


          • #6
            Kadi,
            I am been there and exper. the Rx refill mess, and my refills being constantly messed up! (I have paid for multiple bottles of pills, then tore open the bag and the counters to see if all three were there and only two are in the bag. If I would have walked out without my pain killer bottle they would have said -- Oh we filled it and treated me like an addict. I use Walgreens and will only deal with the head manager. I will only speak to him and pick up my meds when he is working.) I am sorry, especially right before packing before a trip.

            I suprised you have to have a letter of approval if the sterile water is marked with an prescription lablel, no matter how big. Because medical supplies are the exception on the one small sandwich baggie size. People travel with kidney dialysis supplies and the fluids for that are are larger than your instillations. But it is better safe than sorry in the case of travel and taking care of you pain. If you have a lot of travel you could call you senator's or house of representative's office in D.C. (http://www.senate.gov/ or http://www.house.gov/)

            I hope you have good trip.

            ads

            Comment


            • #7
              Kadi, I am so sorry about the mess with the pharmacy and stuff. I know it is so aggravating when planning for a trip and then fighting for your medicine.

              Recently I also have to fight for my medicine, well my husband fought it. I was almost out and it was over 3 weeks since I order it and boy was I getting nervous.

              Kadi if your pharmacy did not have it, they can call another pharmacy and get it. I think I would be pretty mad to if they did not tell me it back-order. You should have been told, so at least maybe you could go somewhere else. I think they just get busy and don't realize we are in big trouble without are medicine. But this is no excuse. Hope you will talk with them about what happen and see what can be done, so it may not happen again, hopefully.

              So sorry Kadi, sending hugs, Trishann

              Comment


              • #8
                I would have totally freaked out too Kadi! That is horrible customer service and I work in customer service. If you can't give the customer the answer you SHOULD tell them that you will check on that and get back to them, ugh! Bad customer service drives me nuts! Hope everything works out for you.
                Christine



                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

                Comment


                • #9
                  Hi Kadi,
                  Sorry to hear your going through all this.I know how you feel.
                  Sometimes I just wish I was a pharmacist.I actually have thought about writing an illegal prescription myself,but I know if they checked I would land in jail.Not worth it,but believe me I was very close to doing it.If you are flying to mexico you dont need a prescription and you can buy anything you want.Some places in central and south america you only need a pharmascist to give the ok.
                  So goodluck on your travel plans.
                  54 year old male
                  Diagnosed with IC in 1994
                  Had symptoms since 1992
                  Three cystoscopies.One biopsy with hydrodistention.
                  This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
                  Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
                  Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

                  Comment


                  • #10
                    You should have no problems with the water. I spent hours researching how to get my instill supplies through airport security and there is actually an easy way to get them through. Put all of your meds in a separate carry-on bag. This bag does not count towards the carry-on limit of one bag and one purse. You will need to put a label (i.e. a piece of tape) with MEDICAL SUPPLIES written on it on the outside of the bag with your meds. TSA has the right to search your meds bag BUT they cannot deny you the right to take any prescriptions medications with you on the plane. Just make sure that all of your meds have a prescription label. For needles and syringes, one label will suffice for all your needles and syringes. You can even take bottled drinking water and IC friendly snacks on the plane as long as they are in your medical supplies bag.
                    Here is a link with more info:
                    http://airconsumer.ost.dot.gov/publi...s/horizons.htm

                    Comment


                    • #11
                      Ok, my doctor's office faxed me a letter saying to carry the medical supplies and Arrowhead water to drink instead of the Dasani only that they have on the plane. They're mailing me the original letter so I should have that soon. The pharmacy said they are mailing the 500cc bottles of water this afternoon, so I should have them by the weekend.

                      And finally, I changed my flight so I arrive the next day, which cuts my trip short, but eliminates the worry about what if my friends' flight is delayed leaving me stuck in the airport.
                      I also had a conversation with my friend about how complex my medical situation is & how challenging the diet is & I think she understands better now.

                      I think now I have everything & it should work out. What is making me wonder if I'm insane is that this is a pretty short trip & this was very hard. I was thinking of going to Europe next summer. Am I out of my mind?
                      I used to travel a lot, LOVED it, and it's my greatest grief about IC is how that has been curtailed.

                      I wish I could've done this stuff today without spending the whole day off & on crying.
                      Kadi

                      -------------------------------------------------------------
                      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!

                      Comment


                      • #12
                        I'm glad it's working out for you.

                        Sending gentle hugs,

                        Donna
                        Stay safe


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                        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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