Sunday, June 27, 2010

Fibro Blog Posting

I have decided to start a blog to chronicle my trials and tribulations of living with fibromyalgia and also fulltiming in the hopes of helping and also learning from others who may stumble upon my writing and decide to participate in the blog. The following post is one that I just wrote and is very long. It details the nighmare I have just lived through in trying to get my medications while we are on the road. So if you are open to a long, involved story, read on! If not, just remember that although $4 prescriptions sound great, they aren't when you can't get them!

I have not had the chance to tell this story yet, mostly because it was an extremely stressful experience and partly because it was not really resolved until this past week. Many of us who take one or more prescription narcotics have had some sort of negative experience, be it reluctance on the part of the physician to prescribe the medicine as needed or on the part of the pharmacy in dispensing it to us for one reason or another. I my experience and in reading other blogs and talking to other chronic pain sufferers, prescription narcotic use is looked at by many people as being somehow wrong, as if there is something shady that we are doing, as if we really do not NEED the medication and are just "faking" pain in order to get our "fix". For example, we know that we should take our required medication at the correct times every day in order to not fall into a possible flare up and to keep the pain at bay. Some of us most also take these meds in order to comply with pain contracts with our doctors. If we are tested and there is too little in our system we can be dropped by our doctor just the same as if there is too much in our system. My own mother has stated that this is ridiculous and that I shouldn't take my pain meds unless I really NEED them and that I have a "low pain tolerance" because I take my pain meds when I am not flat out, lying down in agony. Personally I believe I have developed a tolerance to my pain medications as well as some physical dependence in that if I would stop them "cold turkey" I get the same physical symptoms as an addict coming down off whatever drug he or she has been taking. I firmly DO NOT believe I am addicted as if I were addicted there would not be any spare pain meds in the house! I would not be ABLE to say, "I don't need my hydrocodone right now, I'll wait a bit" as I would be an addict also! With that said let me tell you about my horrendous experience trying to get my May and June medications.
I am currently on three medications that my doctor will only prescribe month to month. While this is extra work for me, and I would imagine for her also, I can understand why she does this. She works at the Potawatomi Health Center in Crandon and there is a very high incidence there of patients who abuse the drugs that they are given in one form or another which then puts her in a bad position both with the DEA and also professionally. While I understand her reasoning I resent being lumped in with everyone else and being treated like an abuser.

The first medication that I am on is cyclobenzaprine which is a muscle relaxant. I have no idea why there is a problem with this drug as it is not subject to the Controlled Substances Act. I currently take this medication twice daily for a total of 60 per month. (The monthly totals will be important later in the story.) The second drug I can only get monthy is tramadol. This drug also is not subject to the Controlled Substances Act so I am not sure why I get so much grief. I currently take 3 of these pills twice daily for a total of 180 per month. And the last "naughty" medication that I take is hydrocodone. It is a Schedule III drug which means -- The drug has a potential for abuse less than the drugs in schedules 1 and 2. The drug has a currently accepted medical use in treatment in the United States. Abuse of the drug may lead to moderate or low physical dependence or high psychological dependence. I currently take 8 hydrocodone a day or a total of 240 per month.

I went online to the Walmart website on Monday, May 26 to order a refill for the three prescriptions. I always try to do this early as the pharmacy has to contact the doctor, the doctor has to fax in the required information, the pharmacy has to fill the order and then mail it. Mailing can take anywhere from 3 to 5 days depending on where we are in the country. I then call the Walmart in Rhinelander and inform them that I need the meds mailed to Goshen Indiana where we will be the following week. It was always a crap shoot as to the attitude I would get each month when calling the store and giving my new address. Sometimes it was accepted and changed with no problem and sometimes I would get treated like an alien for "again" having a new mailing address.

According to information I was given later on, my meds were mailed on Friday, May 30 from the store and addressed to me c/o General Delivery in Goshen IN. On Thursday, June 6 I go to the post office in Goshen and there are no meds. I go out to the truck and get on the phone to the Walmart to double check that they had been mailed. I was assured that they were mailed last week and they read off the address to me. Now Walmart does not mail any prescriptions with a tracking number. All medications that go out are mailed regular mail so they are not able to be tracked. I go back to the post office on Friday, June 7 and still no meds. The post office refuses to even try to assist as the package is not trackable. I ask for the postmaster's name and phone number as proof that I did not pick up a package containing my drugs. After a ton of grief I am able to get his first name and the actual direct number to the office in Goshen as we were leaving the area and heading to South Bend for Bill to work next. I then call and make a complaint with the customer service line at the Post Office. Reluctantly, as I did not have a tracking number, they take down my complaint but I have to give them my home address so instead of the complaint going to the Rhinelander Post Office it goes to Pickerel. Within a half hour I get a call from Becky, the postmaster at the Pickerel office, and she is not happy about the complaint. I try to explain to her that I wanted the complaint to go to the Rhinelander office and not Pickerel but they took it from my address. Now does that make any sense? Just because I live in one area does NOT mean that the problem with my shipment is from the post office in THAT area! So she tells me that she is going to close the complaint -- basically as it is not her problem. So I have to call back and again speak with someone who tells me that my complaint is resolved....NO IT ISN'T! Finally I get her to understand that my problem is with Rhinelander WI and Goshen IN and anywhere in between that may have handled my package -- it shouldn't matter WHERE I live!

I then call the Rhinelander Walmart back to explain what was going on. I get a pharmacy tech named Donna who proceeds to tell me that there is no way that the package didn't get to me and also that I should not be on Badgercare insurance as I don't live in Wisconsin. Wait a minute! I pay both income and property taxes in Wisconsin not that it is any of your business nor your right to have any opinion on it. So I am then upset enough that I call Walmart corporate and lodge a complaint. The first person that takes my complaint skews it to sound like I am complaining that I did not receive my package that was not trackable - I am but the biggest complaint now was Donna's opinion as to my residency status.

I now call my doctor and leave a message for her nurse to contact me. My regular nurse is off that day it seems and I get a call back from a nurse I have never met. I explain the situation and this nurse basically says too bad, so sad and that I was out of luck until next month. I said that I have the postmaster's name and number if she could please take it down to vouch for the fact that I did not receive my shipment. She tells me that she is a nurse and not a secretary and was extremely rude to me to the point that I ask her point blank who her boss is. She says that day it is my doctor. I then tell her I want a call from my doctor ASAP as I do not need to put up with her rudeness.

Needless to say I did not receive a return call. The next day I call my doctor's line again and get a return call from the regular nurse. I explain everything again and state that I have the postmaster's name and number and I would like it down in my chart what has exactly happened. I also tell her of the other nurse's rudeness and she says that it was probably because there are so many people who are lying about their scripts.. I don't care as I do not need to be treated in such a manner over something where I have legitimate proof that the meds never reached me. My nurse says to keep trying to call the post office and to keep them posted on what is going on.

I wait two days, calling the Goshen office each day to make sure that the package has not appeared. It hasn't. I then get a call from a lady in Chicago from the Post Office. She explains that there is really nothing they can do as the package is not trackable. I tell her fine but I wanted them to be aware that packages with narcotics are disappearing on their watch. She also tells me that if I package is damaged in transit it is sent to a central location and destroyed. WHAT!! I ask what if you can read either the sender's or the addressee's name? She says that it sometimes does not matter.

By this time I have run out of meds. I am starting to get withdrawal symptoms such as sweats and shaking. I finally call my doctor's office and leave a voice mail asking if this was medical protocol -- letting a patient go through withdrawal symptoms because they do not have their medications. This must have shook them up a bit as I do believe that would be grounds for some sort of malpractice case. The nurse calls me and says that the doctor will fill 5 days worth of pills and would wait and see if the others turn up. So they call my meds into the Walmart in South Bend. Although I have paid for the meds that are missing I now have to pay full price again because Badgercare does not work out of the state of Wisconsin and because even if I was in the state they will not pay twice in one month.

I do not receive a call back from Walmart corporate so one night I get ticked off enough that I call again. Obviously this time the complaint I had was written up correctly as the next day I receive a call from the pharmacy district manager from Chicago. She asks me to tell her the story which I gladly do. She states that Donna does not have the right to be telling customers what insurances they should or shouldn't have (Ya think?) and that she would get with her immediately. She apologized quite a few times and said to keep ahold of her number in case I ever had any further problems but did suggest that I pay for trackable shipping. I tell her that I am done with Walmart shipping and would be having my neighbor pick up my scripts and mailing them with the rest of my mail.

So life goes on and I keep calling the Goshen post office every other day to check on the package. Nothing appears and I finally give up sometime in the beginning of June thinking I would never see the meds. For the month of June I have my doctor call in my scripts to the Antigo WI Walmart so that my neighbor, Carol, can pick them up easier than in Rhinelander and I did not want to deal with Donna again either! Here is where the numbers I stated previously come into play.

I call my doctor to fill the scripts on Monday, June 7. Carol doesn't get into Antigo until Saturday, June 12. I had given her instructions to call me if they gave her any grief or if the scripts were wrong. She calls me and says that although I had 60 cyclobenzaprine like I should, I only had 90 Tramadol instead of 180 and only 210 hydrocodone instead of 240. Carol puts me on the phone with the pharmacist and I ask if the doctor or they had dropped the ball. I then told him my normal dosages and he says that the doctor called in the wrong amount. I told him I would call the doctor and have them call in the remaining pills for this month's prescription. Although it was Saturday I immediately call my doctor's number and leave a voice mail stating what the pharmacist had said and telling her the amounts that had been dispensed.

The nurse calls me back on Monday, June 14 and says that the doctor will call in the remaining pills. I ask why the mix up and she states that the doctor "may be weaning me off of the pills and deciding not to prescribe me any more." I then tell the nurse that if that is the case I want a phone call from the doctor telling me that and explaining to me for what reason she has decided to do that. The nurse then states that she isn't sure if that is the case but I shouldn't worry this month. THIS MONTH?? What about the next month? What about the rest of my life? I am the one that has to live with this condition and I am doing my damndest to survive it and have some sort of life but I should have to worry my doctor is going to drop me? Give me a break!

Fast forward to Monday, June 21. All of a sudden I get a phone call from the Walmart pharmacy in Rhinelander and the pharmacist states that my package has shown up back there! I tell him that I was more or less called a liar by the pharmacy staff and asked how they felt to be wrong? I tell him that my neighbor will pick up the package sometime that week and he says that he thinks from now on my packages should not be mailed. I then inform him that I am not even using his pharmacy any longer due to my treatment by Donna.

On Wednesday, June 23, I call the Antigo Walmart to alert them that Carol would be picking up the rest of my monthly prescription that day. The pharmacist gets on the phone and says he "will not fill the script" until Friday, June 25. I ask him why. He states that is when my 2 week prescription expires. I tell him that he and I had discussed the fact that those pills were the remaining monthly prescription that the doctor had made an error on. He treated me like I was an out of control addict and kept repeating that I should have pills left yet. I told him that I did but that I normally got one month at time and that the pills still had to be mailed - again. I then repeatedly asked him who was in charge of that decision and he wouldn't tell me. I kept pressing the matter and he finally said HE made the decisions and I was getting no pills until Friday. I then told him to not to bother to fill any scripts because I would be getting a different pharmacy. When Carol stopped by to get the scripts as I couldn't get ahold of her to tell her not to bother, he had the nerve to discuss the fact that I had gotten my monthly allotment of pills -- 1) which I hadn't and 2) where is HIPPA when it comes to them following the law? He had no authorization to discuss my dosages with ANYONE besides myself or Bill.

Carol almost had just as much luck at Rhinelander when she went in to get the returned package. I called earlier in the day and unfortunately Donna had answered the phone. They must have Caller ID as she was sickenly sweet and sarcastic. I asked to be transferred to the pharmacist who confirmed that the package was there. I told her my neighbor would be picking it up later in the afternoon. When Carol gets there she goes to the counter and gets an employee who she stated "was a real bitch". Guess who that probably was? This employee then tells Carols that there is nothing there for me. Good thing that the pharmacist overheard and that Carol knew there was a problem because she calls me right away. I am just ready to have her hand the phone to the pharmacist when someone comes out from behind the counter with the package. And it only took almost 2 months to get it!

I then decided to call the Crandon Pharmacy. At this point I really didn't care whether it would cost more than Walmart's $4 medications -- I simple want good customer service and someone who understands unique situations such as mine. I spoke with the pharmacist there once the scripts were transferred and come to find out my doctor had written a script for 90 cyclobenzaprine, not the 60 that they gave me at Walmart. He also took the time to explain the time frames for the Badgercare and listen to what I told him about the situation as far as the meds having to be mailed to wherever I was as I was not in town. So far it looks like I finally have found a pharmacy who will work with me and is actually closer for Carol to pick up at.

I have learned again that cheap doesn't always bring good service. I should not have to fight so hard and every single month in order to get the medications that I need to basically survive this condition. These medications are no less necessary to me than heart medication is to someone with heart disease! There should not be such a stigma nor such scrutiny on those of us who depend on narcotics to make it through each day and have some semblance of a normal life. It was easier to pick up phenobarbital for Dozer although it is a barbituate. No questions were asked when they gave me a script for Dozer Lind-Siebers containing 60 barbituates. Somehow, some way changes need to be made for those of us who require these meds in order to live life to the fullest which is no less than we deserve.

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