Saturday, August 21, 2010

Insurance and the New Health Bill Part 2 - Blue Cross/Blue Shield of GA

We received some information from Bill's company about the health insurance that is offered to some of the employees. I hesitate to even call it health insurance at all as it is basically only good for health catastrophes. This insurance for the eligible employees would go into effect on September 1 although the benefit year runs with the calendar. So basically there would only be three months in which to try and make the deductible for 2010.

To start it off the cost for an employee and spouse would be $714.18 monthly or $164.81 per week. The real kicker is that there is a $9,000 deductible! Now I can understand one OR the other....high premium and low deductible or low premium and high deductible but this plan is HIGH premium and HIGH deductible! It is almost not doable for most people.

Then to add insult to injury if you have not had insurance for the 63 days leading up to September 1st there is a 12 month pre-existing condition clause which says that any illness or injury that has been treated in the 6 months prior to September 1st will not be covered until the member has had the insurance for a year. So in some cases people will be paying this huge premium, have a huge deductible and not have anything covered for the most pressing needs -- the illnesses or injuries that they already have. Granted medications are not included in the exclusion but with the Walmart $4 prescriptions many of the associated costs of taking meds have dropped significantly especially if the meds are generic.

So to put it into real numbers here is what it would cost us to get insurance from the company.

$714.18 x 12 = $8,570.16  Yearly Premium
                          $9,000       Deductible

                         $17, 570.16 Total Baseline Out of Pocket

                         $9,000        Maximum Out of Pocket From 80/20 Coinsurance

                         $26, 570.16  Total Out of Pocket Until Insurance Covers 100%

THIS is why the health reform bill did not go far enough. These costs are ridiculous.

Friday, August 20, 2010

Insurance and the New Health Bill Part 1 - BadgerCare

Insurance has been one of the biggest issues in our life ever since Bill lost his job in April 2008. The majority of my fibro medical bills were covered by the accident settlement until January 2008 and then were picked up by our health insurance until he was let go. After that I had a chance of a snowball in hell of getting any insurance to cover me with two pre-existing conditions, the fibro and diabetes. I was told that even if I did get insurance those two conditions would be exempt from coverage, for anywhere from 12 months to 18 months. So based upon our income last year we applied for the BadgerCare Core Plan run by the State of Wisconsin. It was a new program that had just been implemented for people without children. The program had always existed for people with children but now it seemed the state was trying to make things more fair for those of us who had chosen not to further overpopulate the world.

At first the plan seemed like it would be something that would be workable -- until we decided to leave the state for employment that is. BadgerCare is only good in the State of Wisconsin and it is only good for certain procedures and certain medications -- no exceptions and no appeals. For example, I could really use the Lidoderm patch as a pain drug that would take the place of some of my pain meds now. Nope. Another program will cover Cymbalta, Lyrica and Byetta for my diabetes but at only about 35% off the regular price. I would LOVE it if there were a generic version of those three drugs but as of right now there isn't and there are no other drugs that are their equivalent in generic form either. It will only pay for my meds in Wisconsin so every month I need to go through the "gauntlet" so to speak. I call the pharmacy that I need my meds refilled.  As three of them are controlled substances my doctor will only renew on a monthly basis and I have a signed pain contract with her. This pain contract gets sent to the pharmacies and emergency rooms around Crandon. That makes a lot of sense as I am nowhere near Crandon but rules are rules! The pharmacy then faxes my doctor. Within a few days or so the doctor faxes them a new script which they then fill. Then Carol, my neighbor, goes into Crandon to pick up the meds and sends them in our next batch of mail. So a good two weeks can pass between the start of the gauntlet to me finally receiving my meds. Good thing I am anal and do things ahead of time. How much easier would it be if I could just pick up my meds at a local Walmart and have them paid by BadgerCare which IS in reality Medicaid, a federal program? Too easy obviously.

Then comes the renewal for BadgerCare by August 31st. I log into the website and attempt the renewal. As it so happens we are now making about $600 too much per month to qualify which is fine -- the problem arose with the amount the denial letter came up with as our monthly income. I entered Bill's income in various forms -- weekly, biweekly and monthly and it still said we were making $7500 a month! I wish! So I call the 800 number and they say I need to make an appointment to speak with someone. The someone calls me at 9:30am this morning and proceeds to tell me that the $7500 amount doesn't mean anything to the state high risk pool.  Uh aren't telling me that bunch of bull. I have been burned too many times by some piece of information being left as is and it coming back to bite me in the rear later on. So then she says that if I want a denial letter that does not state an income amount I need to pay a $60 application fee just for them to tell me that we don't qualify which I already know! I then demand to speak with a supervisor who proceeds to go over the same info with me. I tell her that my next call will be to my state representative as my tax dollars are just not working if their website cannot even add up two income amounts correctly. All of a sudden she is able to access the application and look at the numbers. It seems there was like $4000 in extra income from somewhere that was included in our total but I had not been able to access that information online. All in all, we still do not qualify for the BadgerCare any longer, which I am fine with. But at least now the erroneous income will not be anywhere included in any information when we turn around an apply for the Wisconsin High Risk Pool Insurance sometime next week.

Medical Personnel/Locations Friendly to RVers

I am starting this post which will be added to each and every time I find a caregiver who is friendly to the RV lifestyle or fibro/pain sufferers. I am going to start listing them by state and see how that works and adjust if needed.



Chiropractic Arts Center - visited numerous times in November/December 2009

  • Dr. Clarke Bumgarner
  • 620-251-2970
  • 509 Maple Street Coffeyville KS 67337
  • No x rays or prior office notes needed, $20 per visit by cash or check.
  • I visited this location every other week for the two months we were in Coffeyville. It was a very busy, almost assembly line type office but they were always able to get me in when needed and on short notice. Dr. Bumgarner did only activator adjustments but they did use an electric massager before which helped.


Topeka Therapeutic Massage - visited once in August 2010

  •  Nancy Weigand
  • 785-213-7361
  • 1170 SW Mission Ave Topeka KS 66604 - lower level of Studio 1 Salon
  • After calling quite a few chiropractors in the Topeka area and getting prices in the $100 and up range, I decided to try some massage again as Nancy charges $35 for 30 minutes, $60 an hour, $75 for 75 minutes and $90 for 90 minutes. At the office she only accepts cash and checks but she accepts credit card payments through PayPal ahead of time.
  • Nancy is really easy to talk to and does a great massage if you are looking for a light, relaxing type massage which unfortunately does not work for me. I need a deeper, harder, more like Rolfing type massage to have it work for me.



Healthwise Chiropractic Clinic - visited twice in June/July 2010

  • Dr. John Kleptach
  • 330-494-7158

  • 1170 S Main Street North Canton OH 44720

  • No x rays or prior office notes needed, $30 per visit by cash or credit card

  • I finally broke down and decided to find a chiropractor as my hips and lower back were indescribably painful. I lucked out this time on the first call and reached the receptionist,Barb, who is very cheerful and great to talk to! They were actually able to get me in for an appointment within 20 minutes. Dr. John used warm heat and electric muscle stimulation before treatment. He does both manual and activator adjustments.



First Choice Chiropractic - North Office

  • 5510 Wallwood Road Knoxville TN 37912
  • 865-686-4994
  • No x rays or prior office notes needed, $30 per visit by cash check or credit
  • I did not have a chance to visit this location as I was "ok" while we were in Knoxville but I am listing them as they were reasonably priced and willing to work with the lack of x rays.
Provo Chiropractic Care and Massage Therapy - visited once in September 2010

  • Dr. Marc Bowers
  • 777 N 500 West Suite 205 Provo UT 84601
  • 801-377-0898
  • No x rays or prior office notes needed. $45 per visit by cash, check or credit.
  • I actually was able to try a new (to me) chiropractic method with Dr. Bowers called flexion/distraction. I can't believe that in 25 years of prior chiropractic I had never run into this method. It is where your ankles are strapped on a special table and and the chirpractor sort of "stretches" everything to, in a nutshell, make more room between the vertebrae. For a better definition see here - The doctor also manually adjusted many areas of my back and neck but did them opposite of what I am used to. For example, he adjusted my back while I was lying on it.

Sunday, July 11, 2010

Fibromyalgia, Depression, Lyrica and Cymbalta

This is a topic that I would like to address as I cannot tell you how many times I have had different antidepressants and antiepileptic drugs all but shoved down my throat. And I have resisted for various reasons discussed below. Well, we all know how wonderful it looks to insurance companies, SSDI and others when in a doctor has notated that the patient is not cooperating in prescribed treatments! I find this to be wholly unfair as they never seem to note WHY exactly a patient is not cooperating, just that she isn't. I have also tried to explain to most doctors that I GET depressed at times but I am NOT depressed. There is a difference albeit a subtle one at times.

There is some of the "chicken or the egg" controversy in the fibro world as to whether the fibro causes the depression or vice versa. The Cleveland Clinic states that depression is a "complication" of all chronic diseases, not just fibromyalgia. The estimate is about 20% to 30% or 3 out of 10 which is equivalent to rates for cancer, diabetes and RA. Why would fibromyalgia cause depression? The fact that most of us are daily fighting widespread pain and taking a multitude of medications should be enough but the pain, the medications, the doctor visits, the loss of income, inability to participate in activities that you once did and other life changes caused by a chronic disease can cause huge amounts of stress not only one the sufferer but also on spouses, family members and friends.

Many of the symptoms of depression are also symptoms of fibromyalgia, especially lack of energy, not being able to sleep, problems with concentration. As such, how are you to know if it is major depression or just another facet of this disorder? Personally my deciding factor would be if I had any thoughts of suicide whatsoever. I would then get myself in and accept the antidepressants with no struggle. Your personal deciding factor may be something else entirely but if you are having suicidal thoughts it is not time to split hairs on what is causing it -- get some help fast.

My biggest objection to using antidepressants or antiepileptic drugs for both fibromyalgia and minor depression is two fold - one is that I think they are very much over prescribed and are used by many doctors as almost a knee jerk reaction to many patients' problems. The other objection is the side effects of the medications with the biggest one being weight gain. I have found many, many posts on online forums where patients have gained quite a bit of weight on both Lyrica and Cymbalta and have had medical personnel tell me that it is only the "complainers" that post online. I have been told opposite facts about Cymbalta versus Lyrica by two different doctors within the same week! One doctor said that Cymbalta would not cause weight gain but Lyrica would and the other doctor said the exact opposite! This was said although information on both manufacturers' websites states that weight gain is a possible side effect of taking either drug.

The problem I see here is that no one really knows how their body will react to a certain drug as far as weight gain until they have taken it for some time and by then it is normally too late. You have gained 10 or 15 or even 20 lbs and now have to try and lose it. We all know that losing weight is not the easiest thing in the world for anyone and especially if our ability to exercise is somewhat limited by the fibro. I personally can not allow myself to gain any more weight due to the fact I also have diabetes and my family history is one of various heart conditions. I have decided that for me, the fact that no one can tell if I will gain weight by being on either of these medications makes me unwilling to be a guinea pig. Not to mention the fact that I highly doubt that my Badgercare insurance will pay for name brand medications such as these as they have balked at paying for Byetta for my diabetes. With Bill now being employed I also doubt that I would qualify for aid from the manufacturers. The last time I priced Cymbalta it was $140 a month -- I am just not willing to pay that much money monthly only to gain more weight!

Here are some articles on fibromyalgia and depression and what you can do for help. I have considered counseling but this is something that would be very hard to accomplish while full timing. I have looked into online counseling but have found prices in the range of $60 per hour or $300 for a month of unlimited counseling. I would be paying out of pocket and those prices are just not doable right now on a consistent basis. I am also curious if the online concept works and is a legitimate resource as I can see the huge potential for scams and abuse. Has anyone tried online counseling? What are your thoughts, opinions and recommendations if so?
Here is one resource that I have found.

Tuesday, June 29, 2010

Medical Personnel/Locations Friendly to RVers

I am starting this post which will be added to each and every time I find a caregiver who is friendly to the RV lifestyle or fibro/pain sufferers. I am going to start listing them by state and see how that works and adjust if needed.



Chiropractic Arts Center - visited numerous times in November/December 2009
Dr. Clarke Bumgarner
509 Maple Street Coffeyville KS 67337
No x rays or prior office notes needed, $20 per visit by cash or check.

I visited this location every other week for the two months we were in Coffeyville. It was a very busy, almost assembly line type office but they were always able to get me in when needed and on short notice. Dr. Bumgarner did only activator adjustments but they did use an electric massager before which helped.


Healthwise Chiropractic Clinic - visited 6/14/2010
Dr. John Kleptach
1170 S Main Street North Canton OH 44720
No x rays or prior office notes needed, $30 per visit by cash or credit card

I finally broke down and decided to find a chiropractor as my hips and lower back were indescribably painful. I lucked out this time on the first call and reached the receptionist,Barb, who is very cheerful and great to talk to! They were actually able to get me in for an appointment within 20 minutes. Dr. John used warm heat and electric muscle stimulation before treatment. He does both manual and activator adjustments.

Monday, June 28, 2010

Product Review - BENGAY Pain Relief & Massage

I have always like using BENGAY patches more so that the creams. I also have used Icy Hot Patches and when they came out with a roll on tube much like the BioFreeze roll on I had purchased from my chiropractor I bought that and liked it for my neck area where it is hard to wear a patch at night much less during the day.

I had gotten an $8 coupon from BENGAY as I had called to complain about their hot patches that did not stick to my lower back for diddly squat. Actually they did not stick pretty much anywhere I put them. When I saw the advertisement for the new BENGAY Pain Relief & Massage with "massaging nubs and vanishing scent" I was gung ho to try it.

Well, I much prefer the Icy Hot roll on as in my opinion the nubs really do not do much. Of course, you have to remember I lie on softballs and granite rocks so it would take one hell of a massaging nub to make a dent in my pain level, but besides that they advertise it as having a no mess applicator which I did not find to be true at all. Not that you can't direct the applicator much better than you can the cream by itself, it just that it is not as great a breakthrough in pain relief creams or gels as they make it out to be. By giving them your name, state, age range and email you can get a $3 Bricks coupon for the purchase of a 3 oz tube. Try it and let me know what you think.

Sunday, June 27, 2010

My Prescription Nightmares

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.

Tuesday, June 15, 2010

About Me

It is very difficult to know exactly where to start in relating my experiences with fibromyalgia and myofascial pain syndrome. I "officially" was diagnosed with fibromyalgia after a August 9, 2005 rear end car accident. The funny thing was during the lawsuit that ensued and the HUGE amount of paperwork and my entire history that was amassed -- everything from an injury when I was a few months old to you name it, it was there --- I realized that a pattern had developed for fibro long before I officially had the label. I have always had aches and pains and previous to this accident I was able to handle them without medical intervention -- unfortunately some of those years include self-medicating with a bottle of Jack Daniels! I would go to a chiropractor when I had insurance but I was not on any sort of prescription medications until 2005.

Since then I have had the run around and tried upteen different medications as well as treatments. I have found that chiropractic works best for me right now as when I am in pain I need intense pressure to counter balance the painful areas. I also lay on a granite rock on the pressure points that hurt the most -- usually my upper, mid and lower back. I also take three different narcotics right now and will have some horror stories about them in later posts.

Bill and I had always dreamed of going on the road in the future when things were financially better but the Great Recession practically left us no choice in the matter. There was , and still is, no work in Northern Wisconsin. When he lost his job after 25 years, we were able to keep things together by doing more merchandising and mystery shopping which had been my line of work for about 8 years as it was flexible enough to let me start later in the day if I had had a bad night or skip work altogether if I felt bad enough. Unfortunately due to our location up north we had to drive long distances to get to larger cities such as Wausau, Green Bay and Appleton. It was also very difficult at times to work and live together 24/7. When I saw the posting for openings at in Coffeyville Kansas I decided to apply for both of us and take the plunge now instead of later.

Almost one year later we are doing much better financially than we would have done by staying in Northern Wisconsin. Bill's job at the moment is allowing us to catch up and we can hopefully be debt free except for the RV and house payment by next summer. It has not been easy but it has been a good choice.

This blog will attempt to cover issues that I run into with my health problems while on the road. Hopefully I can give those of you who read some alternative ideas and I can also learn from you if you read something that you have the answer to!

Medical Personnel/Locations Friendly to RVers

I am starting this post which will be added to each and every time I find a caregiver who is friendly to the RV lifestyle or fibro/pain sufferers. I am going to start listing them by state and see how that works and adjust if needed.


Healthwise Chiropractic Clinic - visited 6/14/2010
Dr. John Kleptach
1170 S Main Street North Canton OH 44720
No x rays or prior office notes needed, $30 per visit by cash or credit card

I finally broke down and decided to find a chiropractor as my hips and lower back were
indescribably painful. I lucked out this time on the first call and reached the receptionist,
Barb, who is very cheerful and great to talk to! They were actually able to get me in for an
appointment within 20 minutes. Dr. John used warm heat and electric muscle stimulation
before treatment. He does both manual and activator adjustments.

Saturday, April 17, 2010

National Fibromyalgia Awareness Day May 15

This year's National Fibromyalgia Awareness Day will be Saturday, May 15 with many activities occuring around the country and especially in Fullerton CA. There will be Walks of FAME as well as Lights of Hope ceremonies at various locations. If you are not near any organized activities, please consider becoming an organizer! If not this year then next year. If you are not able to do that you can still support those of us with this disease by sponsoring a candle for the Fullerton Lights of Hope celebration or by sponsoring a walker or even becoming a virtual walker and getting your own group of sponsors. Another important way you can help is to sign a Pledge to Care to show support for the National Fibromyalgia Association in it's advocacy efforts. There is more information on these programs and more at . The more that those of us with the disease as well as our loved ones speak out and get involved, the more that the public, skeptical doctors and immovable insurance companies will be able to use the excuse that "it's all in your head" and deny us the treatments and research that is needed for us to be able to live full, and hopefully some day, pain free lives.