I forgot to make a post yesterday.  It was one of those typical Thursdays that Douglas Adams wrote about that you just can’t get the hang of.  Everything goes absurdly wrong and you are left feeling annoyed.  By time we got done running errands and dealing with stupid people it was 10:00pm and we still had to make dinner for everyone.  Days like that suck.

So, today we ended up having a few more errands to run and one of those was picking up medications at the pharmacy.  Since the first of the year when our insurance changed our co-pays out of the roof.  I keep reminding myself that it could be worse.  I know what some of these meds cost without insurance and it’s not pretty.  That doesn’t mean that I am not annoyed when one of my co-pays goes up to a record high of $50.00!  We are paying over $22,000 a year for insurance coverage (this is AFTER my husbands company pays their portion) and we still end up paying well over $4800 a year in drug co-pays.  Anyway, my husband asked me how much my Savella was without insurance because it’s one of the sky high co-pays.  It’s around $125 so having insurance coverage helps, I think.  However, I am starting to think that if we had the $22,000+ that we are paying pre-taxes every month everything would work out the same.  I would have to do that math.

While looking for the information on line of the cost of my Savella, I came across a blog called Your Pharmacist May Hate You… written by a pharmacist.  But it was this particular post that I came across in my effort to find what my med cost.  Now, I went back and read some of his other posts where I am not judging someone based on one thing they wrote.  That would be wrong.  For the most part I appreciate his sarcasm and I am just as cynical about the drug companies as he is, but his post about Savella and fibromyalgia really upset me.  I have spent years putting up with this kind of attitude from people in general including some doctors that I have had.

The “it’s not a real disease” mentality is doing more harm than good for a lot of people.  It is demoralizing for those of us who are suffering.  It diminishes us as people.  It tells us that our quality of life doesn’t matter.  We are even told we are crazy.

First it was the endometriosis.  It started when I was about 15.  Until the age of 22 when I had a real diagnosis I was told it was appendicitis (I was given antibiotics), I was told it was IBS, I was told it was a STD (but the doctor couldn’t give me a name for the STD),  I was told the pain was in my head.  For seven years I was jerked around by doctors and had to learn to live with pain and vomiting every month.  There were times the pain was so bad I went to the ER hoping someone there could do something for me.   Once I had a diagnosis doctors paid a little more attention even though I ended up hearing, “That can’t be the cause of your pain, you have been pregnant,” because not all doctors understand the disease.

Then I found out that I had been untreated for PMDD since I was probably 19.  After my last child was born I ended up having bad panic attacks.  The slightest amount of stress would set me off.  Sometimes nothing would set me off.  Then one day coming back from Baltimore I hallucinated a Civil War soldier crossing the road on a horse in front of the car.   It was time to go to the doctor.  He asked me a lot of questions.  Insomnia, nightmares when I did sleep, the anxiety attacks, the migraines, the periods prior to the insomnia that I could sleep for three days straight, the new hallucinations and the mood swings was not normal PMS.  I had the advanced kind that states make PMS laws for.  It was put in my medical record that without meds for it, I was certifiable and sent home with Prozac.   Problem solved.  The thing is, it turns out I should have been medicated back when I was 19.

I remember when I was 8 telling my mom that when I was laying down to sleep that I would forget to breathe.  She told me I was insane and that was the dumbest thing she had ever heard.

Fast forward to about three years ago.  I ended up having a dizzy spell and passing out when I got out of the shower.  I hit my head on the toilet on the way down.  I attributed it to the problems that I had with my back (mild scoliosis that gives me a world of problems but isn’t bad enough by medical standards to justify surgery) and found a new neurologist since we had moved and I didn’t want to drive 45 minutes.  After a plethora of tests that included a EEG, EMG, EKG, blood work for a laundry list of diseases, a nuclear bone scan, a sleep study and a MRI I was told  that I had sleep apnea (my mother was wrong, I did forget to breathe) and I was given a CPAP (many of my non-hormone headaches stopped), arthritis in my neck and fibromyalgia.  This was after checking me to make sure I didn’t pass out from MS or some other horrible neurological disease.

I didn’t even know what fibromyalgia was.  I wasn’t shopping for a dx and drugs.  I had passed out for some unknown reason and I wanted to know why.  I never walked into a doctors office and said, “Hey, I think I have fibro.”  I discovered that Lyrica made me lick the walls and the book case and other things that should not be licked, and had to quit taking it.  Savella wasn’t on the market yet so I was given a script for Ultram to help control the pain.  I was given topical pain cream for the arthritis and Lidoderm patches for my scoliosis related hip pain.  No narcotics.  No hard drugs.  This worked well for me for about two and a half years, minus the few days of the year we had horrible low pressure systems from hurricanes and winter storms.  Even with meds those days it felt like every bone in my body had been broken.  I wanted to cry I was in so much pain.  I could barely move.

Then I ended up at a new gyn because I was tired of endometriosis related problems and being blown off by my current doctor.  I was sent to my GP because my blood pressure was up.  I didn’t have a GP and had to find one.  The gyn did all those things that a gyn does, sent me for an ultrasound and mammogram.  When I came back for my follow up she scheduled a hysterectomy.  FINALLY!  The endo would be gone!  The PMDD would be gone!  After I mostly recovered from the hysterectomy I made the comment that was the most normal I had ever felt.  I was amazed at how sick my hormones had made me.

I found a GP for my blood pressure.  He also did a laundry list of blood tests and gave me a complete physical since I hadn’t had one in who knows how long.  I found out that in the three years since my neuro drew blood to check my thyroid it had gone south and since he noticed my thyroid was enlarged he sent me for a neck ultrasound.  I have developed thyroid nodules.  He also determined that my blood pressure was up because my fibro wasn’t under control since I wasn’t put on any management drug.  He put me on Savella.  The drug worked great for me and I didn’t have any of the side effects that *may* occur.  Believe me, I am very cynical and jaded when it comes to trying new drugs.  I go into it all expecting the worst because the one and only time I was given Codeine I found out I was allergic.  The one time in my life that I took OTC Motrin and Benadryl together (headache and bee sting allergy) I was stoned off my ass and ended up checking out Barry Manillow music from the library.  I even called the pharmacy and asked if they were safe to take together.  Yes they are…for everyone but me.  I have had allergy med scripts that were supposed to be non-drowsy meds knock me on my ass for hours.  In general I just don’t tolerate medication well.  I couldn’t even take birth control pills to keep the endo under control without weird and rare side effects.  I really was not expecting anything other than an uncontrollable urge to play the bagpipes from taking Savella so I was really surprised when it worked.

Then 8 months later I developed the one reaction/side effect from taking both Savella and Ultram together that I should have had from day one on both drugs.  Serotonin Syndrome.  Naturally that was over looked by the doctors because it *should* have happened months ago.  Now I am without the one pain med that did anything for me because it’s important to keep the fibro under control because it screws with my blood pressure and makes me hypertensive.

Now, I don’t blame some of the cynicism that comes from people about fibro or any other invisible disease.  There are people out there who are always looking for a way out of being a productive member of society.  We used to have neighbors who had motorized scooters because they were too fat to walk further than the bathroom.  The husband in the couple even openly admitted that he faked being nuts to get SSI and told people how he did it.  The problem is that cynicism due to the bad apples makes it harder for those of us with legitimate medical problems to get care because doctors treat everyone as if they are looking to score pain meds (narcotics) or looking for a way to get SSI where they can be lazy.  I spent three years walking with a cane because of hip pain before I asked the doctor to sign off where I could get a handicapped placard for the car because I felt there were people who needed it more than I did.  I was thinking about all those old people in their 70’s and 80’s with arthritis who still need to go to the grocery store.  I was thinking of blind people like a friend of ours.  I was thinking of people like my dad who were injured in Viet Nam and have had parts of their body reconstructed.  It never really occurred to me that there would be fakers who just wanted the good parking spot where they didn’t have to walk an extra 100 feet.  Apparently though, that is a big problem in this area.

Doctors really need to stop treating everyone the same and automatically assuming that everyone is a drug seeker or looking for the easy way out until they are proven differently instead of the other way around.  Pharmacists need to respect the decisions that someones doctor has made about their care instead of claiming that people have made up conditions.  I don’t doubt any of the crazy stories I have heard from behind the drug counter about drug seeking and patients going to doctors and ended up with scripts because they are seeing a long list of doctors who don’t know everything they are on.  I am lucky and my doctors talk to each other and fax each other reports.  Every patient isn’t the same.  We need to quit being treated like we are.  End of story.  That’s how things get undiagnosed. My husband was considered a whiner and told to get used to the way he felt because all his blood work was normal.  That is how two severe vitamin deficiencies, celiac disease, severe sleep apnea and narcolepsy were missed and that almost cost us our marriage.  The cynicism that doctors have about their patients is what has caused my cynicism about doctors.  There is a problem here.

There is also an adorable Year of the Rabbit bunny picture here: