October 24, 2019

Peter2My husband celebrated his 73rd birthday today.  It seems that the older you get, the faster time goes by.  We celebrated, just the two of us, with a store-bought shepherd’s pie and cheesecake.   After supper, we watched the current episode of “Doc Martin”, his favourite TV show.

Ever since I was diagnosed with an autoimmune liver disease I have had an MRI done every six months.  According to the Liver Foundation, autoimmune hepatitis is liver inflammation that occurs when your body’s immune system turns against liver cells. The exact cause of autoimmune hepatitis is unclear, but genetics and environmental factors appear to interact over time in triggering the disease.  I am sure that the inflammatory medications I took for years prior to my back surgery in 1983 complicated the issue.   Today I had a Multifocal CT Scan and hope the results come back sooner than later.  I find that waiting for test results can be very stressful.

We had more rain this week.  It seems that it has rained or snowed on most days in September and so far in October.  Hopefully, the rain will stop so that the water levels can drop back down to normal.

Last night I woke up at 3:00 AM, that awful time when the boogeymen come out and my brain does not stop the continuous slide show featuring all of my failures and disappointments.  I can tell my brain to shut up and shut down.  I can cry, count sheep, pray for relief, but nothing seems to help.  Last night the slide show played scenes from my life, beginning from 1981 to 1983 and 1988 to 1998.  The slide show began with me trying to explain to my doctors what it feels like to deal with constant debilitating pain.  As the slide show reminded me trying to explain is incredibly difficult, especially when the doctor does not believe you.  On March 6, 1981, I woke up with the most awful back pain.  The doctors I saw would not believe me.  After all, I was 32 years old and there were no outward signs of illness.  One of the doctors I saw asked me what my husband did for a living.  I told her he worked for one of the major computer companies.  She asked me if he travelled.  I said yes.  She then told me in no uncertain terms that she knew what was wrong with me.  I had VD, either gonorrhea or syphilis.  She went on to tell me that all American men who travelled for their jobs had sex with other women.   I was left speechless.  She insisted on doing the blood work that would prove her diagnosis.  Needless to say at that point I fired her and found a new family doctor.  The problem with finding a new doctor is that you are accused of “doctor hopping”.  Anyone with half a brain would know that if someone has excruciating pain the last thing on their agenda is “doctor hopping.”

The next doctor I saw with regards to my back problem accused me of being crazy and depressed.   I pleaded with this doctor to send me to a specialist, but of course, the answer was no.  At my last appointment with this megalomaniac, I again begged her to refer me.  She told me that I had mental problems and did not need to see a specialist.  I finally reached my limit.  I asked her, “Do you want to see crazy?  I will show you crazy” at which point I grabbed my cane and used it to push all the items off her desk.  When I headed to her shelving unit to continue my rampage she yelled, “Stop, stop I will send you to a specialist.”  A few months after I last saw her, it was reported on the evening news that she had neglected to listen to and properly treat a young man barely out of his teens.  The young man died of stomach cancer.  After her neglect became common knowledge she promptly left Canada to go back to the country of her birth.  Before she left, she did refer me to a great orthopedic surgeon and I had back surgery for a ruptured disc in April 1983.  When I first hobbled into the orthopedic surgeon’s office, he asked me how it was possible that I could walk into his office.  I told him it was with great difficulty.  The orthopedic surgeon told me that there was a 50% chance that I would be paralyzed from my lower back down to my toes.  You know what?  At that point the pain was so severe I did not care.  After my surgery, it took six months to get the feeling back in my left leg.  Since the surgery in 1983, I have never again had a problem with my back.   After the six months passed, I could walk, run up and down my stairs, skate, downhill ski, etc.

It took ten years of weird symptoms before a country doctor in Manitoba finally diagnosed me with Graves disease.  I received the diagnosis in December 1997 and drank radioactive iodine in April 1998.   The delay in diagnosis was partly my fault.  After my previous experiences, I did not trust doctors.  I did not believe that they would take my weird symptoms seriously.  Some of my symptoms included extreme anxiety, depression, fast heart rate, high blood pressure, inability to sleep properly and migraines from hell.  I had another reason for not sharing my symptoms.  Two close family members, nurses, told my husband and children that I was crazy, probably taking illegal drugs and should be committed to the nearest hospital.   They told my children that their mother was crazy.  I cannot describe how this betrayal felt.  These two nurses, who were trusted members of my family made no effort to help me.  Even after I was diagnosed they continued with their pathetic ideas.  One of the nurses prides herself on never having to say I’m sorry.  Life after radioactive iodine has not been easy and if I could do it over again I would opt for surgery.  At that time I did not have a choice.   One of the lessons I learned from my experiences was never to doubt myself and to listen to my gut feelings.  We know our bodies better than anyone else.  Another lesson was to realize that doctors are only human and that they do make mistakes.   Most of us have to own up to our mistakes, but doctors get to bury their mistakes.

When you are in Pain and Nobody Believes You

Go to your appointment with extra information about your condition.  Research credible online sites such as the Mayo Clinic and research universities.  Do not give up even if you have to repeat yourself over and over again.  Give doctors copies of your research.

Find conferences and support groups dealing with the same issues as you.

Keep talking about your concern with someone until they will listen.  Do not give up.

Believe in yourself.  Do not let anyone tell you what you should feel.  If a doctor tells you he does not believe you, walk away.  Do not let anyone diminish how you feel.

Keep a journal documenting how you feel and how you cope.

Ask for copies of the results of all your tests and procedures.  It is your body and your right to get copies.

Bring your advocate along with you to your appointments.  They can help you remember what was said.

Keep a concise list of your symptoms and treatments.  I had a doctor accuse me of lying because I could not remember the date I had seen a certain specialist.

Make sure your doctor will deal with your pain.  Also, make sure that your doctor wants to find the cause of your pain.

Fire your doctor if they do not take your pain seriously.

Hope you all have a great weekend.  I would love to hear your comments on the issues I write about.

This entry was posted in Autoimmune disease. Bookmark the permalink.

2 Responses to October 24, 2019

  1. jan says:

    Happy Birthday Peter !

    Like

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