Tag Archives: trust

I Don’t Believe in That Disease










I used to think having to be retested for a disease whenever a new physician didn’t believe that I had it was frustrating.  I can’t tell you how many times I was told by a new doctor that they didn’t believe my diagnosis of psoriatic arthritis from another physician.  Each time they wasted my money and time by reordering all the same tests, that wow, surprise, had the same results.  Thankfully, they would accept their own results and move on.

My diagnosis of fibromyalgia has been more problematic. In fact it almost cost me my life……..

Soon after receiving my diagnosis of fibromyalgia, I began having abdominal pain. I began seeing my gynecologist way more than I ever did while pregnant with my daughter.  During one visit I mentioned my diagnosis of fibromyalgia and he said, and I quote “That’s not a real disease.”

Believe it or not, his thinking that fibromyalgia wasn’t a real illness actually helped me for the first two years.  Because he didn’t believe in it, he pushed my insurance provider to approve an exploratory surgery when all tests came back showing nothing wrong.  That surgery revealed that I had endometriosis and an extremely large ovarian cyst.  The cyst and adhesions had pulled my bladder, uterus, and left ovary towards my sidewall.  In addition, they not only pulled my left fallopian tube towards the sidewall, it had adhered and embedded itself into it!

The pain and symptoms returned within a year. Thankfully he still didn’t believe in my chronic illness and agreed to perform a hysterectomy.  That surgery revealed a belly full of adhesions and a bunch of ovarian cysts.  In addition to what was found in the prior surgery, adhesions were also pulling my rectum towards my sidewall.  So far so good, right?! In fact you may be wondering how this led to me almost losing my life. Less than six months later, the pain on my left side returned and……..

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I was horrified when the pain returned.  My OBGYN had removed my uterus, ovaries, and fallopian tubes.  I had also had an appendectomy prior to the hysterectomy.  There wasn’t anything left that could be causing the pain that I was experiencing.  I returned to my gynecologist who after hearing about my pain, decided to blame my pain on fibromyalgia! The very disease he adamantly denied existence of became an easy way for him to get rid of a complicated patient.

Over the course of two years I went from one surgeon to another.  Not one would consider that I could still be experiencing problems from endometriosis or that it was possible that something went wrong with my hysterectomy.  One after the other opened my chart, without running any tests or performing any type of examination, and blamed fibromyalgia.

You may be thinking, wait a minute, those doctors believed that you had fibromyalgia!  I will never know whether they really believed that I had it or not, but I do know that they knew very little, if anything, about the disease.  When I would explain that his had never been one of my fibromyalgia symptoms, they would just say that they heard it was a symptom of it.  If they didn’t blame fibromyalgia, they told me that it was all in my head and that they would happily refer me to a psychiatrist.  Then they would close my file and leave the room…….

Two years, twenty surgeons, not one was willing to help me.  Each and everyone blamed an illness they knew little to nothing about and even denied until it became an easy scapegoat.  These men made me doubt my sanity, made everyone except for my husband and children think that I had lost my mind.  Friends and family believed that I was depressed, addicted to opioids (why else would someone go to the emergency room as much as I did), or that I wanted surgery for attention.  Funny thing about the last thing, is that all those who didn’t believe me, never helped out during the prior surgeries.  In the meantime my pain increased, I became weaker, and sicker.

Long story short, surgeon number twenty-one finally believed me and agreed to perform surgery.  What he found shocked me, the attending nurses, and the surgeon himself.  I had adhesions everywhere.  He had to scrape from my cervix up to my diaphragm. He also found that a large portion of my left fallopian tube had been left behind during the hysterectomy.  It was infected, covered in endometriosis, and was embedded into my sidewall.  Not only was it embedded into my sidewall, there was evidence of how it had adhered and embedded to other areas of the sidewall and was pulled out by adhesions.  If that wasn’t enough, my bowels were being strangled by adhesions.  But according to my original surgeon and 20 more, it was either fibromyalgia or in my head……..















My saga doesn’t end here. But the point of this post isn’t to share the entire story, but to demonstrate how if any of those surgeons had believed in or had any knowledge about fibromyalgia, I wouldn’t have had to suffer the way I did.  I have always despised my diagnosis of fibromyalgia and will continue to until doctors choose to learn more about it.  The ignorance of 22 surgeons almost cost me my life. As the surgeon who found the mess informed me, having my bowels strangled like they were would have killed me.

It doesn’t matter if a physician believes in fibromyalgia if they are not educated in it.

Have you ever been told that your disease isn’t real by a doctor?

Have serious unrelated symptoms/illnesses been overlooked because of your diagnosis of fibromyalgia or other disease?

The damage I suffered continues to haunt me and put my life at risk.  Don’t let the ignorance of one or twenty-one doctors put your life in danger. Had I given up, I wouldn’t be here to share my story with you today.
























Not so Paranoid

Every time someone says that I am paranoid something happens to prove that  what seems to be paranoia to them is actually justified fear on my part. Last Friday I went to see my doctor about a GI problem that has wormed its way into my life.  I decided to make use of my time waiting for a prescription by throwing around subjects for this weeks blog with my family.  Just as I was beginning to get frustrated about not knowing what I wanted to talk about, this week’s subject matter smacked me upside the head.  While chatting, the name of the prescription kept nagging at me.  Mid sentence I asked my husband to grab the name brand medication off of the shelf so I could check the ingredients.  The reason for this is because there are very few medications that my body will tolerate.  Knowing that I wouldn’t be able to return a prescription once opened and because I didn’t want to suffer a bad reaction I figured I better take a look.

The reason I had this appointment was because I have recently begun having serious digestive issues.  At this point my doctor is suspecting an infection in my stomach, pancreas, and or gall bladder, as well as ulcers and or gall stones.  Tests are being done and in the meantime my symptoms are getting worse.  My doctor had asked if I had been taking any over the counter medication for the vomiting, diarrhea, and nausea.  I told him no, because all the OTC medications for these symptoms contain two to three ingredients that I am highly allergic to.  In his attempt to help calm my symptoms before we have answers he prescribed a prescription version of a Prilosec.

One of the reasons I thought to check the ingredients is that I wondered if there was a reason I hadn’t tried this on my own.   I scanned the list of active ingredients and can you guess what I found?  That’s right! Two ingredients that I absolutely can not tolerate.  With this information in hand I rolled up to the pharmacist’s counter and asked the pharmacist if the version prescribed would have the same make up.  Sure enough, it did.  I explained that I was unable to accept that prescription and that I would have to ask my doctor to find something else, that is if there was actually something else that didn’t contain those particular ingredients.  The pharmacist asked me to wait, he said that he had a liquid version and that he would check its ingredients and call my doctor himself.  And so we waited…..

My husband and I wonder if doctors are ever going to learn to take my allergies and in-tolerances seriously.  I had felt comforted when our new healthcare provider’s computer system was smart enough to set off alarms and flashing lights when they tried to order a tetanus shot for me.  I thought this was great!  Maybe the amount I worry about being given something I can’t have can decrease.  Obviously I was wrong, because it didn’t catch this prescription.

My doctor approved the liquid version and the pharmacist and I went over the ingredient list together.  I was relieved that it didn’t contain any magnesium or talc.  There was only one ingredient I questioned, but decided to take a chance.  That ingredient is Red Dye #40.  We are a dye free household.  My princess is highly allergic to red dye.  She can not eat it, drink it, or come into contact with it in any liquid or powder form.  Do you know how hard it is to find liquid medication without dye?  It is almost impossible.  Many years later after not having food coloring in my diet on a daily basis, I began to notice that I would feel sick or my overall pain level would increase after eating or drinking it, but my reactions were nothing compared to what my daughter experiences.

I don’t really know what to think about the medication that I finally ended up with.  I am not having the reactions that I would have had if I had taken the pills.  That is a plus.  But it is not helping either.  At this point I am not sure if it is coincidence or if it is the medication at fault, but my symptoms have gotten worse.  I also feel like I have an alien in  my belly trying to claw its way out.  I have decided to give it another day or two.  If it doesn’t let up I will contact my doctor and see what he thinks.  All I know is that I am miserable!!!!unnamed

If anything, whatever is going on inside of me has proved the point that I make over and over.  Trust NO ONE.  Check the ingredients of every prescription!!!!  Research every medication and test ordered!!!  Do not believe for one second that just because your allergies and sensitivities are listed on your chart that they will be taken into consideration.  In this instance, these ingredients were on my chart and I had just had a lengthy conversation about them with my doctor minutes before he ordered the prescription.

This is not the first time this has happened to me.  Doctors used staples to close my incision from my first c-section after being told of my metal allergy.  This caused a nasty infection and doubled my recovery time.  Another didn’t take my allergy to traditional sutures seriously and also resulted in an infection and longer recovery time.  A third assumed that dis-solvable sutures would be no different than the glue like ones.  Wrong!!  I have had tests that required me to drink a liquid only to have my throat close up right in front of the doctor because it contained ingredients that I can’t have.  Another kept prescribing medications that contained ibuprofen, another thing I am allergic to.  When I asked him to pay attention, he defended himself by saying that the amount of ibuprofen in those pills was very small.  Obviously  the amount doesn’t matter to my body.  These are just a few examples of why I am “paranoid”.  I could fill a book with all the mistakes that hospitals and doctors have made with me.

This frightens me.  God forbid I am ever in a position of not being able to speak up or do the research.  This last incident was also a reminder that I need to make a list for my husband to keep with him and for him to question everything that a hospital or doctor does to or for me.

I will gladly take the blame if this current prescription is making things worse, since I decided to take a chance with the red dye.  But I am holding my doctor responsible for prescribing the pill form without checking the ingredients.  In the meantime I will wait for my test results and keep on keeping on..

Paranoia may destroy you, but justified fears just may save your life.

Gentle Hugs,

The Disabled Diva



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