Why? Small rant

Discussion in 'Fibromyalgia Main Forum' started by Tigger57, May 10, 2006.

  1. Tigger57

    Tigger57 New Member

    Can someone please tell me why some days have to be so damn difficult?

    I had to report to work at 7:30 this morning because something needed to be done before 8:00. That’s not a problem… I went. I did my work and left at 3:00. I left at 3:00 because my hours have been 9-3 M-F. I wish it were more because I need the money and the benefits, but we all know that.

    When I left at 3:00 I had to drive to my rheumy’s office (about 15 miles north of where I was). I picked up my prescription and headed home with a few stops on the way. I stopped and picked up something for dinner and then went to the pharmacy (about 25 miles south of where I had been). I got to the pharmacy and… they didn’t have any of the fentanyl patches. So, she called three other pharmacies and non of them had them either (either there was a run on them or not that many people are using them). Come to find out there was non to be found for a 25 mile radius and I didn’t have the gas to go running from pharmacy to pharmacy so I took my prescription and came home… and even that wasn’t easy. First, I’m suppose to change my patch today. By tomorrow I’ll be lucky if I can move at all. Anyway, I drove home and got on the back road that leads to my house and… a delivery truck is broken down across the road about 2 miles from my house… so I had to sit there for 20 minutes.

    It should not have taken me 2 hours to get home (Rhode Island is really, really small), and I should have at least been able to have my pain meds. I can’t even get it tomorrow morning because I have to be in to open up one of the training rooms for 8:00.

    I hurt and I’m frustrated. I sick and tired of my bad luck having bad luck. I can’t even go to an “unknown” pharmacy because they will ask for my ID and I haven’t seen my license since some time in January… and believe it or not, that’s not even close to being on my list of things to do right now. I sat in my car in tears just saying… pain meds or gas for the car, or the mortgage… gee, the pain meds win because I can’t do anything without them.

    Thank you for listening. I’m now going to cry myself to sleep again.


  2. rosemarie

    rosemarie Member

    Every month is the same thing I get the scripts from the doctors and off to the pharmacy I go. Where I had over the many scripts I have to the pharmist who knows me by name and has done for YEARS.So what do I have to show the pharmist right away? You got it my ID Drivers License. EVery time I go I have to show it. IF I am filling anything that is a narcotic . I have used this pharmacy for years and I am really good friends with the owners of the store. Yet because of the FEDRAL LAW all of us have to show ID for our narcoitic scripts. AS much as it bugs me there is nothing I can do about it.

    I have enough scripts each month that I really don't want so spend more time at the pharmacy but I have to. AS soon as I hand over the scripts I am told I need to see your ID . It does not take that long but it does hold up the lines at this pharmacy. I feel like I live there one day a month.

  3. PVLady

    PVLady New Member

    Sorry you had such a hard time. The next time you have to pick up a prescription I would phone them before you leave your work and make sure your meds are there and ready.

    In fact, call them the day before in case they don't have your meds, you will have time to get them elsewhere. I cannot believe they did not call you immediately before you came in, to let you know there was a problem.

    That is so inconsiderate. I would also remind the pharmacy, in the future to let you know if they do not have your meds. A five minute phone call would have saved you all the aggravation.
  4. Tigger57

    Tigger57 New Member

    I have to physically pick up a paper prescription (basically a new prescription) every month because of the class of narcotic the patch is. Only then can I go to the pharmacy to get it filled.

    It wasn't that it was a refill that I could have called earlier about. I know the pharmacist tried, but I was so done in at that point that I just wanted my heating pad... yes, the same heating pad that I'm not suppose to use because I burned myself with it. I needed that heat to relax some muscles.

    So, today I will go on a mission again to try and fill this prescription.

    It just was one more thing to show how difficult life can be for us at times.
  5. Tigger57

    Tigger57 New Member

    ... I don't have to show my license. I haven't seen that since some time in January. I guess it could have been worse.
  6. Marta608

    Marta608 Member

  7. erfula1

    erfula1 New Member

    Hubby was on phentanyl patches and suckers and morohine and he had to get a new script every month. He talked to the pharmacist and he made sure that he ordered it for him every month so it would be there at the right time. After you talk to them you might want to call them the week before and remind them to order it and then call again a couple days before you go to the Dr and remind them again. It sure beats being without your meds or driving all over the place. After a couple months hubby had no problem, they'd have it waiting for the prescription to fill it for him.

    Sorry you are having it bad right now. It must be the moon or something cause a lot of people are, including myself and I haven't had a flare in a very long time. Oh well, it will get better. It always does.
  8. Jordane

    Jordane New Member

    So sorry things are going backwards at lightening speed!!!!:>(

    With all you go thru with this DD.You only ask for a little something to ease the pain.And have to struggle to get that.

    My doc gives me refills of a sort.Get a certain amt each month for 3 months.Then I need another prescription(sp?). It helps out a LOT!!

    Hope everything goes better for you this time!!!:>)

    Hugzz to you all!!!
  9. thirkmom

    thirkmom New Member

    Almost every other month for the past 3 years I have a problem getting my Oxycontin. It is so tightly controlled here in Utah that I could get what I needed in the local high schools back parking lot with no problem or aggravation.

    I never know what problem is going to arise when I pick up my prescription and the way the Dr. writes them there is no way I could stash a couple in case of an emergency. First of all I had to sign a contract saying I wouldn't share,sell, and 100 other things. I can't get any pain meds from anyone else, not even the ER and I have to use my designated pharmacy. If my pharmacy is out of my pills it's too bad for me. The Dr. writes the script to cover 30 days only and then I have to wait another few days sometimes to get an appt. Say I get my script filled on the 15th one month. The following month the 15th may be a Saturday so I can't get an appt. until the 17th. That's over the 30 days and I'm out. Then there's the few months we have 31 days. I can't win.

    So I get my script and drag myself to the pharmacy.
    I have even called ahead to let them know I'm coming in and what I need. When I get there, they have forgoten to hold some back for me and have filled other people's prescriptions. So some months I have to wait another 2 or 3 days until they get some in. A couple of times the supplier was out. I threw a royal fit and told them I would be in the next day and they better have my meds. Usually they send someone to another store in the chain and bring them in the next day.

    Well, I made it to the pharmacy without falling asleep.
    Wow, all is going well, the pharmacy has my meds today (feelings of warmth and relief surround me). The pharmacy tech smiles and is very proud that they are going to make me happy. His smile turns into panic as he notices the Dr. forgot to sign, did not put in how many mg, or dated it wrong and has left the office for the day, weekend, week or whatever and cannot be reached. My smile rapidly changes into the look of a raving maniac. I don't say anything because the tech is visibly shaken and when I open my mouth I start to sob uncontrollaby. What I really want to do is lay down and pound my fists and kick my feet but by now they hurt to bad so I guess I'll have to settle for the fetal position.

    The pharmacist, realizing I'm scaring off customers comes to console me. He can't make sense of anything I'm saying. He takes me over to his little counseling booth and tells me now now don't get so upset. When we reach your Dr. we'll get this worked out. Again, I start to blubber. I'm totally out and just can't go through another withdrawl. He goes in the back and comes out with about 10-12 pills and says he is loaning them to me until we get things straightened out. Guess who ends up straightening it out? You got it. Me! I have to pick up the new script and take it in.

    The day I pick up my scripts has turned into a terrifying experience as I wait in line and wonder. Is my script okay, do they have them in stock?

    I totally identify with you frustration. LuAnn
  10. EllenComstock

    EllenComstock New Member

    I understand the frustration of getting a narcotic filled. I feel fortunate in that I have a doctor that I only have to see every other month as he writes out two prescriptions for my morphine. Finding a pharmacy in my area that carries it was a problem. I found a pharmacy in the town I work in that carries it. In the town I live in, no one carried it. Things like this are so frustrating especially when we are in pain and have limited energy.

  11. Tigger57

    Tigger57 New Member

    I'm lucky in the sense that my usual pharmacy is a Mom & Pop kind of place. The pharmacist, more than once, has come out and just gave me a hug because she can't believe all that I have to go through.

    I had one prescription that the doctor dated wrong... instead of putting 2006, he put 2005... makes that prescription no good and it's not something that the pharmacy can call and get faxed to them. I have to go to the doctor's office and get a physical prescription and bring it to the pharmacy. Most of the time it works o.k., but the other day was just bad. Then when you are late changing the patch you suffer so from the pain that it seems to take forever to get everything (painwise) settled down again.

    I really needed it because I'm going to have to drop my insurance and I'm looking for ways to pay for this prescription. Most of the others are not that expensive... except the Lyrica... I just couldn't afford that one and it did help.

    There just isn't enough accessible help out there for us.
  12. thirkmom

    thirkmom New Member

    I think the biggest problem that I am having is I had a wonderful Dr. who had fibromyalgia and so she understood what I was saying and knew how to tx the symptoms. She used to write my scripts for 3 months and date them ahead for me and I only had to go see her every 3 months unless I had problems. About 1 1/2 year ago she died in a scuba diving accident at one of the reservoirs here in Utah. Not only was that tragic for her family but her patients were devestated and left hanging. Our records became part of her estate. Her partner couldn't take on any new pts. because she was so busy that she hadn't taken new patients in a long time. I was going to Salt Lake to see this Dr. because I couldn't find one that my insurance paid for in Ogden that treated fibromyalgia and the rheumy's are booked 4 month in advance.

    My mom loves her Dr. and on her next visit mentioned she was concerned about me not having a Dr. and explained what happened. He told my mom that he had been a resident under my Dr. while going to Medical School and she taught him a lot about Fibromyalgia and CFS. He told her to have me call and set up an appt. He to turned out to be wonderful and to this day is my GP. After we got a good working relationship going he out of the blue told all of his chronic pain patients we had to go to a pain clinic. He had made errors occasionally on my prescription that I didn't even notice but we got things worked out.

    So, now I have to pay another co-pay every month and go to this pain clinc which is overseen by a neurologist who really doesn't like treating people with fibromyalgia. I don't think he knows much about it or cares to. It turns out I had to see his PA and I really loved her and it took us a few months to get that working relationship going and making sure the scripts were done right. In the meantime the state of Utah came out and would no longer let Dr.s write prescriptions ahead. This is when it became most frustrating because there was no leeway if there was a problem. After seeing her for 5 months, I went in for my December appointment and without any notification was told she was on a personal leave of absence and didn't know when or if she'd be back. (Come to find out she gave the Dr. a 6 weeks notice because she took a job at another pain clinic in town and he got mad at her and told don't bother finishing out the 6 weeks-). My insurance will not cover that clinic. That day I waited to see the neurologist for 2 hours.

    I saw this guy Jan., Feb, Mar, Apr, and everytime I went in he acted like this was first time we met and treated me that way even though my chart was in front of him. He was always asking "and why are we doing this?" When I would check the prescription he would act insulted and say, "I did it right" Or what's the problem?" A little intimidating. On my last appointment in April he asked why he was giving me pain meds if I wasn't working. He made me feel like I didn't deserve them because I wasn't working. I told him you're giving them to me so I can get out of bed and go on living. I have to see him Monday and I'm not happy. I called my insurance company and filed an appeal asking them to please let me go see my PA at her new pain clinic. I would pay out-of-pocket for the office visit but the insurance company won't honor and pay for the scripts she writes and my oxycontin is really expensive if I have to pay for it myself.

    So I have been passed around and around and like I explained in my original post they will only do 30 days no matter what, so there is no room for error. The neurologist out of the clean blue in February had his office call and cancel my appointment. He decided to go out of town at the last minute and I could not get another appointment until the next week. I am not addicted Rick, I have built up a tolerance and I went through a full blown withdrawl because I had no meds for 4 days. I have never been so sick in my life.

    Rick, I embellished the story, I'm not that stupid. I do have a problem with the tears. I open my mouth and my eyes leak. I didn't cause a scene. I did not throw myself on the ground even though I felt like it and the pharmacist (who I know well) could see I was upset and had me go down to his counseling booth because there were a lot of other customers standing around. The other Pharmacy in their chain is 20 miles away and so it's not that easy to just run over there. I'm new to the boards and so I realize you don't know me. I have a joking personality and I try to laugh at things because if I didn't I'd cry. That doesn't come across in the written word and I forget that. I'm sorry that I came off that way to you. The last thing I need to do is act like an addict. Thanks for calling me on in. I will be more serious in the future. I didn't realize I was coming off that way and if anyone else was offended I'm sorry. I best not post anymore until I get a better feel of the attitude. I appreciate being called on this. Thanks for all of you kind words and the good things you guys do here.
    [This Message was Edited on 05/13/2006]
  13. starmom

    starmom New Member

    We had some similar problems with my son's ADHD meds and another med he was on. The pharmacy would run out, or "lose" the fax the doc sent, or the written prescription I gave them! They also only wanted to dispense his meds when a certain pharmacist was on duty (other pharm didn't want to have to check ID's or anything like that).

    I checked my ins plan and moved my meds to a locally owned pharmacy. They have very quick service, are happy to call the doc for me, always check to see if a new med will react iwth other meds, let me know what side effects are, etc..

    They will also check the amount on hand a few days before my refill is due. This way they don't run out.

    And, I still pay the same copay.

    I also got a bunch of free groceries! I complained about the problem to the owner of the grocery store the old pharmacy was in. I was polite, gave several examples of specific problems, and he said to talk to him the next time I came in. I did go talk to him, and he just took the ticket from my groceries away and walked them out to the car for me!!

    He said it was an apology. He certainly does not want to lose my parents huge pharmacy account.

    I still go there for groceries when I can!

  14. erfula1

    erfula1 New Member

    Please don't feel that way. I thought Rick's post came across as offensive and I could read into your post that you were merely giving an example of what happened to you. You did not sound like an addict. I know from past expereience with pain meds that when you go without them you suffer whether you are addicted or not. A physical dependancy will occur with anyone whois on them long term. This does not make one an "addict". That is why I no longer take pain meds. I do not want to be dependant on them but I never judge someone else who has to.

    I think Rick owes you an apology. That is my opinion. I was shocked when I read his post. I apologize for him if he will not and I hope that this doesn't run you away from this support. We are here to support each other and even if we don't agree with everything each person thinks it should come across in a constructive way, not a condemning one.

  15. erfula1

    erfula1 New Member

    That is exactly why I gave up. I watched my hubby go through it with his illnesses. He has Crohn's Disease, Colitis, IBS, rhumatoid arthritis and a leg amputation. He was sent to pain management by his Drs. He was put on phentanyl suckers and patches, morphine, methadone and I don't remember how many others. Luckily we did have a good pharmacy but after he was on it for over a year the state stepped in and screwed up his insurance leaving him without any coverage for 3 months. Now when he was put on all this they made him sign a paper that if he were to come off of it he would voluntarily go to rehab. Well, with no insurance he couldn't!

    His prescriptions were almost $3000 a month and there was no way we could pay for them and he had to stop cold turkey. He almost died. He was in so much pain from his illnesses and the withdrawals it was unreal. It took him months to recover from it. He never abused the meds. He took them exactly as prescribed and he went through withdrawals. Since then he has vowed to never be dependant on pain meds again. He won't even take a hydrocodone. He said he would rather deal with his pain everyday than go through that again.

    I won't go into everything that I have been through with Drs but I will tell you that I got tired of being labled a pill head and reading in reports that I was after narcotics when the strongest thing I was on long term was Tylenol 4. I finally disgustedly went off all meds and now am doing the natural remedies. It is so sad that there isn't more help out there for us and that we are so mislabled when all we really want is a shot at a normal life. A tolerable life. It really still disgusts me.

    I am a lot happier mentally now that I don't deal with Drs but I still wish that I could get the right treatment. I will never go the pain management route though because of all the stigma that goes with it and you are never really safe from being jerked off all the meds at any time after you have become dependant on them.

    It just isn't right. Sorry, just had to put my 2 cents in there.
  16. thirkmom

    thirkmom New Member

    Thank you all for coming to my aide and allowing me to vent and share. You guys are all so supportive and kind. It is so nice to be able to talk to others about these problems. I don't know anyone else in my circle of friends, family, and acquaintances that I can share this with. I don't know any one who takes daily scheduled narcotics. You just never know who is going to be judgemental so you just hold it inside until one day you feel like you could burst.

    I told one lady once I had fibromyalgia pretty bad and that I took a lot of medications for the symptoms. She said, "Oh I have that and when it gets bad, I just take a Tylenol." The tone of her voice and facial expressions were really condenscending. She does hair and is on her feet all day and I asked her how she did that. She knows I'm on a disability, but said, "Oh, I just gotta buck up and do what I gotta do." I bucked up did what I had to do for 11 years. I was a non-traditional student working 2 part time jobs, taking care of 3 sons who were in their early to mid-teens at the time, my husband worked rotating shifts, and I had study groups and research papers to do. I was under a tremendous amount of stress, but I had always wanted to be a nurse. It was about that time I was dx with fibromyalgia and 2 years later CFS. I finished school, graduating with my RN degree with Fibro and CFS. I was only able to work 6 short years. I was on my feet for 12-14 hrs a shift as a nurse and my fibro was becoming more painful with each passing year. It was very devastating to have to quit. I keep my license current by doing continuing education classes, which isn't easy with the "fog". I want to go back to it some day but right now it isn't even feasible. I think working so hard for what I wanted was my downfall and the longer I bucked up and did what I had to do made it worse and worse. So here I am.

    I really wish I could take a Tylenol and feel better. My life would be so much better and pleasant. Well thanks again and thanks for encouraging me to continue to post. I will choose my words and thoughts better and try to keep out of trouble. That will be hard because trouble is my middle name. Well, I hear my husband fussing in his sleep, that means if he wakes up he'll come looking for me and ask why I'm still up. If I go now maybe I can slip into bed before he wakes up. Goodnight Good Morning or Whatever it is. Oh, it's Mother's Day now. Enjoy your day with your families. LuAnn
  17. erfula1

    erfula1 New Member

    I am sorry but there is no way. I don't take narcotics but I can tell you that when I am in a flare Tylenol doesn't make it "all Better"! I too used to work on my feet from 10-14 hours in retail management and the harder I tried to tuff it out the worse it got. It killed me to do it because it was my career for over 12 years but I had to walk away. There isn't a time that goes by that I don't miss it cause I was very good at it until I got sick.

    Now I am happier physically though which makes me happier mentally. More power to that lady if she really can deal that way, but if she really has FM it isn't gonna last.

    Don't worry about getting into trouble, we are all a little mischevious!!!!
  18. Tigger57

    Tigger57 New Member

    you all gave me a lot to think about.

    I know that I cannot function without my patches. Oh, I wish I could. I've got to learn to get to the doctor earlier and warn the pharmacy earlier.

    What I find so sad is what these meds cost us. I'm working and can no longer afford to keep my insurance or most of my meds. I've cried many tears over that.

    I don't want to have to give up, but it may be what I have to do in order to survive in the future.

    Bless you all.
  19. MamaR

    MamaR New Member

    I hope that you get this worked out soon. I will say a prayer for you... because know what it is like to be in pain and need the relief!

    I've been gone alot. I've missed so much with everyone.
    I am having alot of different issues now. My PC doc looked at my last test results and thinks that I have Lupus. I am going to try to get to these EXPENSIVE tests run soon as I can afford it. Life...huh?

    See you around.....Mari

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