April 14, 2020


Easter weekend has come and gone and we survived isolation quite well.  Our daughter dropped by to bring her dad a mask that she had made.  She put the mask in a bag and hung it on the outside door handle.  We shouted our thanks and waved at her through the window.

What I did miss was the family tradition of an Easter basket hunt.   My dad hid Easter baskets every year for as long as I can remember.  They were hidden outside if weather permitted and if not they were hidden in the house.  He continued this tradition even after his daughters were married.  He then included baskets for the sons-in-law and for the grandchildren as they came along.  The baskets included chocolate, candies and a gift or two.  The gift was always something that he knew we really wanted.  To say I miss those times is an understatement.  However, the yearly Easter basket hunts have left me with wonderful memories.

The featured flowers on this page are crocuses, one of my mom’s favourite flowers.  Every spring we would drive out to the Sandilands Forest Reserve and look for the first crocuses that had managed to peek out of the ground.

This virus we are all dealing with has certainly changed many lives.  It has not been an issue for me to stay at home since I am practically a hermit.  My husband has driven away some of the boredom of staying in the house by walking the dogs or taking them for rides.  I just wish that everyone would abide by the guidelines set out by the government and stay home.  There are always idiots who think that they are special snowflakes and can, therefore, ignore the rules and guidelines.   The 1918 flu epidemic had a terrible toll on my dad’s family.  His oldest brother Joseph died at the age of 8 just a few days after my dad was born.  My grandfather had to build the casket and prepare the body of his dear boy without any help from family or friends.  They feared the consequences of the flu.  On the day of the funeral, my grandfather placed his son’s casket on the wagon, hitched up the horses and made his way to the village church about four miles away.  He was unable to enter the church and remained on the wagon with his son.  A church window had been left open so that he could listen to the funeral.   Once the funeral was over he buried his son in the church cemetery.

My daughter is truly an amazingly creative person.  She decided that she would help the health care workers in Winnipeg by sewing surgical hats and masks.  She has never had sewing lessons but through sheer determination to learn has managed to create quite a number of masks and hats.  Natasha is the drop-off point and coordinator for the Seven Oakes Area in Winnipeg.  She posted the following on her website:

VOLUNTEERS NEEDED:

Hello everyone, we simply did not anticipate the demand that we would be meeting when the sewing of surgical caps for healthcare workers took off.  I realized too late that there were a couple hundred workers in my area alone. Each person needs at least two to four caps.  I know that not everyone can do this, for a huge variety of reasons and there is NO shame if you choose not to participate.  We all have our own call to help in this pandemic. You do your best with what you feel you need to contribute.  I have been going non-stop for seven days and I am humbled by my limitations. I cannot function today. My body has literally shut down and I cannot make hats today.  It breaks my heart because I have people depending on me. I only have one other person to help sew. We cannot meet our quotas alone.  If you love to sew and you need a project, please consider helping us. You certainly do not need to make it a morning to night commitment. A few caps here and there by many more people would make an enormous difference.

Please pm me if you wish to contribute, even if it is a few caps. The nurses/healthcare workers are desperate for these items and every cap helps.  I am the drop-off point and coordinator for the Seven Oakes Area. I will respond as quickly as I can.  I may not be able to respond instantly.  If you would like to help contact me at widebertha@gmail.com. Thank you so much,  Natasha

Note her bossy bird Nemo is perched where he can be sure to voice detailed instructions and complaints as needed.

Stay safe and please stay home.

I would love to hear from you after you try the following called “How Smart Is Your Foot?”

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April 7, 2020

Another week in isolation, but, since I consider myself a hermit it really does not bother me.  After making the worst mistake of my life by agreeing to drink Radio Active Iodine, the most common treatment for Graves Disease,  I had to change my lifestyle.    Two ways I keep boredom away is by reading and writing.   I have spent many years researching the Zacharias side of my family and continue to do so.  Thankfully, I have learned how to keep busy without depending on the outside world.   Hopefully, we will soon see an end to this virus.

Yesterday was a day of great accomplishment for me.  I actually managed to iron 15 shirts and 5 pairs of pants.  You would not believe how long those items have been hanging in the laundry room waiting for me to get motivated to iron them.  Sad when one considers this to be a great accomplishment.

I was supposed to go for blood work today, however, I made the decision not to go.  Since the lab is only a few feet away from the waiting room for approximately 20 doctors I felt the risk was not worth it.  Hopefully, I have made the right decision.   The reason for the blood work was to check my potassium levels which have been on the low side and my TSH.   I am sure that my surgery will not be scheduled for quite a while since it is elective surgery.

Our only grandchild, Benjamin, celebrated his 26th birthday on April 5th.  We were unable to celebrate this special day with a family get-together, but we did chat on the phone.  Benjamin and Danika are enjoying their new apartment.

Ever since stopping Cytomel, I have been incredibly tired.  I wake up tired in the morning. Hopefully, once my thyroid levels are back to the level I need to feel good the fatigue will go away.  I believe that the TSH number should not be the only thing that doctors look at.  I feel the best if my thyroid levels are 0.1.  Most doctors would frown on this number and consider it out of the normal range.  However, that is the number I need to function.

My post will be a short one this week.  I have writer’s block.  Hopefully, this too shall pass.  According to Wikipedia, this is the definition of writer’s block:  Writer’s block is a condition, primarily associated with writing, in which an author loses the ability to produce new work or experiences a creative slowdown.  The condition ranges from difficulty in coming up with original ideas to being unable to produce work for years.

Author Unknown.  If anyone knows who the author is please let me know.  Thanks.

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March 27, 2020

Free photo 2106866 © Chrisharvey – Dreamstime.com

Time seems to fly by these days and sadly I find that I am neglecting my blog.  I really do make an effort to do better, but what I can say other than I am old and forgetful.

I saw a cardiologist on March 9th and he cleared me for surgery.  Apparently, my EKG was fine and my heart rate was normal.  Hopefully, the surgery will take place within the next four to six months, though I think this virus pandemic might just interfere with that.

My friend Kathy posted the following item on Facebook and I felt it was important to pass it on to my readers here at “Not over Till the Fat Lady Sings.”  The article is as follows:

Individuals like myself, are the ones considered to have “underlying health conditions” A quick lesson about autoimmune diseases. It takes an average of three years and five doctors for a person to get a proper diagnosis of an autoimmune disease. It is a disease where instead of your white blood cells protecting your body from invaders, they turn around and attack your cells, tissues, and organs. Chronic fatigue is another symptom. It is not a cold or the flu, you will never get better, and even a nap will not help. Just eating a salad and hitting the gym won’t slim your face or get the pounds off. Sleeping 10 hours doesn’t leave you well-rested, ever. The last-minute changes in plans because that “just got ran over” feeling never makes appointments, it just walks in whenever you aren’t ready. Painful joints, muscles and bones, dry skin, breaking hair, hair loss, mood swings, and depression are just the tip of the iceberg. You are also prone to having multiple autoimmune diseases; they typically come in pairs of two. You easily catch viral and bacterial infections. You have days where no matter how hard you try; you just can’t smile for anyone.

I urge you to think twice before passing judgment and thinking our nation is overreacting to the extra measures being taken to curb the spread of this virus. YOU might be able to recover from it no problem, however, carry it to someone with an autoimmune disease and that individual won’t be as lucky.

Please, in honor of someone who is fighting Rheumatoid Arthritis, POTS, MCAD, Sjogren’s, Scleroderma, Hashimoto Disease, Ankylosing Spondylitis, Fibromyalgia, Lupus, Sarcoidosis, Hepatitis, Myasthenia Gravis, Raynauld’s Syndrome, Diabetes, Addison’s, Mold Illness, Celiac, CROHN’S, Ulcerative Colitis, Pemphigus, SPS, MS, PBC, Psoriatic Arthritis, CIDP, MMN, and GPA stay safe and follow isolation rules.  For more information on Autoimmune Diseases, go to Aarda.org.

Today I would like to focus on Addison’s disease.  A dear friend of mine deals with this disease on a daily basis.  Jan has fought for her life many times during an Addison’s crisis.  The following charts and graphs may help to explain this disease.

Mayo Clinic gives this definition of Addison’s disease:   Addison’s disease, also called adrenal insufficiency, is an uncommon disorder that occurs when your body doesn’t produce enough of certain hormones. In Addison’s disease, your adrenal glands, located just above your kidneys, produce too little cortisol and, often, too little aldosterone. Addison’s disease occurs in all age groups and both sexes and can be life-threatening. Treatment involves taking hormones to replace those that are missing.

Symptoms – The following information comes from the Mayo Clinic’s website at https://www.mayoclinic.org/diseases-conditions/addisons-disease

Addison’s disease symptoms usually develop slowly, often over several months. Often, the disease progresses so slowly that symptoms are ignored until stress, such as illness or injury, occurs and makes symptoms worse. Signs and symptoms may include:

Extreme fatigue

Weight loss and decreased appetite

Darkening of your skin (hyperpigmentation)

Low blood pressure, even fainting

Salt craving

Low blood sugar (hypoglycemia)

Nausea, diarrhea or vomiting (gastrointestinal symptoms)

Abdominal pain

Muscle or joint pains

Irritability

Depression or other behavioral symptoms

Body hair loss or sexual dysfunction in women

Acute adrenal failure (addisonian crisis)  

Sometimes the signs and symptoms of Addison’s disease may appear suddenly.  Acute adrenal failure (addisonian crisis) can lead to life-threatening shock.  Seek emergency medical treatment if you experience the following signs and symptoms:

Severe weakness

Confusion

Pain in your lower back or legs

Severe abdominal pain, vomiting and diarrhea, leading to dehydration

Reduced consciousness or delirium

In an Addison’s crisis you will also have:

Low blood pressure

High potassium (hyperkalemia) and low sodium (hyponatremia)

When to see a doctor:

See your doctor if you have common signs and symptoms of Addison’s disease, such as:

Darkening areas of skin (hyperpigmentation)

Severe fatigue

Unintentional weight loss

Gastrointestinal problems, such as nausea, vomiting and abdominal pain

Lightheadedness or fainting

Salt cravings

Muscle or joint pains

 

 

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February 8, 2020

Before I begin my post I would like to wish all my readers a Very Happy New Year; one filled with much joy, many blessings, good health and a wealth of wonderful memories.  Please forgive my negligence when it comes to keeping my blog up to date.  I hope I still have some followers left who have not given up on me.

Christmas was rather a low key event this year.  We spent Christmas day at home with our grandson, Benjamin and his partner, Danika, our daughter Natasha, and her partner Mike with his daughter Melissa, and our son Prescott.  First Choice provided us with another delicious Christmas dinner, which included turkey, gravy, meatballs, stuffing, mashed potatoes, corn, broccoli salad, cranberry sauce, and buns.  It is such a treat to be able to sit down to a wonderful Christmas dinner without having to plan and cook the meal.

Weather-wise January and February were strange.  The temperature fluctuated from as warm as -2C to -30 C.  These fluctuations play havoc with my poor old bones.  Of course, once the temperature hits -2C the humidity becomes very noticeable.

As I mentioned in a previous post, Manitoba Health has approved my surgery.  The surgery will include a breast reduction and modified Panniculus.   Panniculus is a medical term, describing a dense layer of fatty tissue, consisting of excess subcutaneous fat within the lower abdominal region.  Abdominal Panniculus can be removed during abdominal panniculectomy, a type of Abdominoplasty.   My pre-surgery exam with my family doctor was scheduled for December 13th at which time he discovered that I had a resting heart rate of 129.  I mentioned to him that ever since the fall of 2019 I had been very nauseous and tired when I woke up in the morning.  Extreme fatigue continued all day.  I often would have episodes when I found it hard to catch my breath.  My family doctor told me that this could be a result of a high heart rate and he ordered an EKG and blood work.  The next morning was a Saturday and upon waking my resting heart rate was 140.  Since my heart rate was higher than the day before my husband and I decided that we would go to the hospital to see if I could get an EKG that morning instead of waiting until Monday.   I had the EKG in Emergency at the local hospital since the lab does not take walk-ins during the weekend.  The blood work was done at the same time.  The EKG registered my heart rate at 142.  We had a conversation with a nurse practitioner in Emergency and he told us that the heart rate problem might well be the result of the drug Cytomel, a thyroid medication I had been taking since 1999.  Apparently, our bodies change as we age and medications can begin to affect us differently.   We waited for nearly seven hours to see the emergency doctor.  When no doctor showed up after all this time we decided that I needed to get home so we left.

After doing some research online and thinking about the situation, I decided to quit taking Cytomel to see if my heart rate would settle down.  I was taking 200 mcg of Synthroid and 25 mcg of Cytomel.   My heart rate slowly went back to normal.  After being off Cytomel for nearly two weeks restless leg syndrome struck.  What a nightmare!   My legs jerked and crawled for three days and three nights.  I was ready to jump off the nearest bridge.  Finally, I got my husband to take me to the Emergency department at a small country hospital just twelve miles from the town we live in.  By the time I got to this emergency, my blood pressure was 179/119 and my heart rate was at 150.  The only help the doctor could give me was sleeping pills in the hope that I might be able to get some sleep.  The sleeping pills worked and I slept.   Sadly, upon waking the next morning the restless leg syndrome was still there.  Thankfully, we finally found our own solution later that day that miraculously took away the restless leg syndrome within minutes.   It truly felt like a miracle.  I must also mention here that our visit to the Emergency Department at the country hospital was a wonderful experience compared to the visit to the Emergency Department at our local hospital.  At the local emergency, I waited for nearly 7 hours and did not see a doctor.  At the country hospital emergency I was registered, questioned by a nurse, seen by a doctor and on my way home within an hour and a half.  Amazing difference in service.

After this horrendous episode, I decided to give the Cytomel another try.  The rapid heart rate returned within a few hours.  Of course, these problems caused the surgeon some concern and my surgery was put on hold until the heart issues could be resolved.  I saw my family doctor on January 31st and he told me that PVCs at irregular intervals had shown up on my EKG.  Premature ventricular contractions (PVCs) are extra heartbeats that begin in one of your heart’s two lower pumping chambers (ventricles). These extra beats disrupt your regular heart rhythm, sometimes causing you to feel a fluttering or a skipped beat in your chest.  However, my family doctor said that this too could be a result of Cytomel.  He ordered an EKG and blood work to be done on February 3rd and told me to discontinue taking Cytomel immediately.  He has ordered another EKG and blood work to be done on March 5th.  Hopefully, my heart issues will be resolved by then and the surgeon can go ahead and schedule my surgery.

At my January 31st appointment with my family doctor, I was surprised to learn that my potassium levels were a bit too low.  I have discontinued Elival which is a potassium leaching drug and have been eating at least one banana a day.

My friend Marina picked me up on Friday and we spent a lovely afternoon together.  I had not been out for coffee in ages.

We had a lovely visit today with our grandson, Benjamin and his partner, Danika.  They came for supper and shared with us the particulars of their upcoming move.  We are so excited for them and hopefully, this will be a wonderful new adventure for them.

Again, I promise to try to do a better job of keeping up with regular contributions to my blog.  I really do have good intentions, but for some reason, they disappear and it seems to take forever before I realize they are gone.

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December 1, 2019

The following statement made by Dr. Oz is something every woman should know about. I do not necessarily agree with all of Dr. Oz’s medical advice, but the following information he presented is very important. I was diagnosed with Graves disease in 1998 yet I have never heard about the correlation between thyroid cancer and mammograms or dental x-rays. Since my lumpectomy in 1997, I have had a mammogram every two years. I never saw any evidence of a “thyroid guard.   A “thyroid guard” will be used during my next mammogram.

Christmas will be here in 25 days and I have yet to start my shopping.  During the last two weeks, my nights have been miserable, but instead of moaning and groaning about this situation, I have spent the time thinking about what I would like to give each member of my family for Christmas.  I have managed to come up with a few ideas.

After the last Multifocal CT Scan of my liver, I thought I was in the clear for at least another six months.  My very vigilant family doctor, Dr. Goldberg, sent the results of my blood work, MRI and CT Scan to my liver specialist, Dr. Steven Wong.  Dr.  Wong, also a vigilant doctor, has scheduled me for more blood work and another Multifocal CT Scan at the end of January.

Early last week I received some really wonderful news.  Since I lost weight I have had really nasty problems with yeast infections.   They occur under the flap on my abdomen that was left after my weight loss and under my breasts.  My family doctor sent me to a plastic surgeon to see if it was possible to have this surgery, which would include a breast reduction and tummy tuck (actually called “removal of abdomen fat flap) paid for by Manitoba Health.    The news is that Manitoba Health will be paying for both surgeries.

My family doctor referred me to the local physiotherapy clinic just over a year ago.  Last week I finally saw a physiotherapist.  However, the appointment was held in my home.  The physiotherapist spent an hour with me discussing my various health issues, had me walk up and down my hall and sit on a chair and move my arms and legs up and down.  He told me that they were much too busy to see patients at their location in the hospital.  He gave me a sheet of simple exercises to do and said that if he had the time he would call me just before Christmas to see how I was doing.

The highlight of last week would be the arrival of the Franz Isaak Journal.  Franz Isaak was married to Helena Zacharias, my great-great-grandfather, Wilhlem Zacharias’s sister.   I knew that Wilhelm had a sister.  I had received her death certificate from the Saskatchewan Department of Vital Statistics.   The journal provides the names and important dates of Helena’s ancestors, Franz’s ancestors, Franz and Helena’s children, and Franz and Helena’s siblings.  Included in the journal is a diary written in the old Gothic script dating back to the early 1700s.   It will take me a while to translate.  When I need to translate letters and journals in the Gothic script, I will work on one page while my husband Peter works on another page.  We then exchange pages and review each other’s translations.   In this way, we are often able to translate missing words, make changes if need be and end up with a good end product.

Hope you all have a great week.

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October 30, 2019

It has been many years since my grandson and I dressed up for Halloween.   We sure had a lot of fun in those days.  Grandmas enjoy Halloween with your grandkids because before you know it, they are too old to dress up or take “trick or treating”.

As I mentioned in my last post, October was a rather stressful month for me.  On October 7th, a week or so after my last six month MRI my family doctor called me to tell me that four lesions were visible on the images.  Knowing that I was more susceptible to get liver cancer than others because of liver disease I was terrified.  All my previous MRI’s had come back normal.

I had an October 10th appointment with my family doctor at which time we discussed the ramifications these lesions could cause and what other diagnostic measures we could take.  He ordered blood work which included an Alpha-Fetoprotein (AFP), Tumor Marker.  Medline Plus describes this blood test as follows:  An AFP tumor marker test is a blood test that measures the levels of AFP in adults. Tumor markers are substances made by cancer cells or by normal cells in response to cancer in the body. High levels of AFP can be diseases such as cirrhosis and hepatitis.  High AFP levels don’t always mean cancer, and normal levels don’t always rule out cancer. So an AFP tumor marker test is not usually used by itself to screen for or diagnose cancer. But it can help diagnose cancer when used with other tests. The test may also be used to help monitor the effectiveness of cancer treatment and to see if cancer has returned after you’ve finished treatment.

The other test he ordered was a Multifocal CT scan which I had on October 24th.  My family doctor called me on Saturday, October 26, around 5:30 PM to tell me that no lesions were seen on the Multifocal CT scan and that the tumor marker blood test was only slightly elevated.  The conclusion by the radiologist and my liver specialist was that the MRI image was flawed.  I cannot express the immense relief and joy I felt upon hearing this news.  I was finally able to relax and get a few hours of sleep at night.  The boogeymen left for parts unknown and I hope they never come back.

I received with my doctor’s call what seems like a new lease on life.  In the coming winter I hope to complete or at least work on some of the projects I have been neglecting.  My goal is to finish in cross stitch two pictures of Ukrainian dancers for my grandson.  He was a Ukrainian dancer for eight years.  I would like to smock a dress for a little girl we know.  I need to complete a website I have dedicated to my dad  https://worldwar2conscientiousobjectors.com and of course, continue work on my https://zachariasfamilytree.com site.

I wish you all a great and spooky Halloween.  May the ghosts and goblins fly swiftly past your front doors and may the witches be deterred from peeking into your windows.

Until next time………

Our six foot blow up pumpkin.

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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.

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October 14, 2019

 

Wishing you and yours a wonderful Thanksgiving Day.

Last week Thursday and Friday we were hit with a snowstorm caused by a Colorado Low.  Western Canada was hit with a blizzard the previous week so I guess this week it was our turn.

Thankfully, we did not get as much snow as Western Manitoba.  The picture below is not a river but a road in southeastern Manitoba.  We have had enormous amounts of rain in the last few weeks.  Roads are washed out and flooding has occurred in many areas.  The ground in many areas of Manitoba is saturated and the water has no place to go.  This includes our backyard.  I noticed that the geese were flying south much earlier this fall.  I guess they knew something we did not know.   Apparently, there is another storm heading our way from the West.

 

The above snow pictures were taken on Friday, October 11th.

I found some interesting facts about Chronic pain.  Chronic pain is a sure-fire way to disrupt one’s mental health and perhaps lead to a change in character. It will change moods, behaviors, and personality characteristics, and it will not take long. … Notice your mental health suffer as your life continues to grow isolated. – https://www.practicalpainmanagement.com.

If you have painyou may also have anxiety, irritability, and agitation. … Usually, as the pain subsides, so does the stressful response. But with chronic painyou may feel constantly tense and stressed. Over time, stress can result in different emotional problems associated with depression. – https://www.practicalpainmanagement.com.

When the body experiences the latter, it can change the central nervous system (CNS), and influence sensory, emotional, and modular circuits that would otherwise inhibit painChronic pain is now looked at as a neurological disease of its own with symptoms of anxiety and depression. – https://www.webmd.com

Approximately 70% of chronic pain patients have reported feeling angry at themselves and at healthcare professionals,  but this may be an underestimation. Among individuals with chronic pain, high levels of anger are often associated with greater muscle tension, pain severity, and pain behaviors. – https://www.practicalpainmanagement.com

At present, I am still working on my genealogy project.   I took two weeks off because my pain was such that I could no longer concentrate.    However, we must preserve and keep going no matter what the cost.  I am hoping that the research and writing that I am doing will keep my brain functioning.

This week I have spent my time researching Holodomor.  Holodomor was a man-made famine in Soviet Ukraine from 1930 to 1934 that killed millions of Ukrainians and other ethnic groups.  In the Ukraine it is also known as the Terror-Famine and Famine-Genocide and sometimes referred to as the Great Famine or the Ukrainian Genocide of 1930–34. Wikipedia  My great grandparents, Bernhard and Helena (nee Zacharias) Giesbrecht both starved to death during this horrendous time in Soviet Russia.  Throughout Canada, in each and every year, the fourth Saturday in November shall be known as “Ukrainian Famine and Genocide (“Holodomor”) Memorial Day”.  I will remember my great grandparents.

The funeral of my great grandmother, Helena (nee Zacharias) Giesbrecht. Cause of death was Stalin’s man-made famine.

 

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August 31, 2019

It is the end of August and the last long weekend of the summer.  The weather forecast is on the cool side, 13C tonight,  high of 20C with rain for Sunday and Monday and a high of 18C for Tuesday.  Surely does not feel like global warming.  I keep wondering if the powers that be have got it wrong and we are slowly heading to another ice age.

Just after the long weekend at the beginning of August, my dear friend Desta and her granddaughter Lexi paid us a visit.  Desta and I had talked on the phone but had not seen each other in 20 years.  We had a lot of catching up to do.  When we were both 15 years old, Desta came to Steinbach from Red Lake, Ontario to attend a private school for one year.  Her parents brought her to Steinbach and that weekend met my parents at church.  My mom and dad happened to be the “greeters” in the church lobby that Sunday and invited Desta and her parents to our house for lunch.  This happenstance meeting led to a lifelong friendship between Desta and I.  Desta lived in the US for many years until she lost her husband due to illness.  A few years later she moved back to British Columbia, Canada, where she now makes her home.

After much thought, I decided to make life a little simpler by combining the “Opioids for Chronic Pain” site with this one.  I feel it is important to voice my opinion and let others know that they are not alone dealing with this crisis of removing pain medications from people who suffer horrible chronic pain.  Unless you live with chronic pain and rely on some form of opioid painkiller to make it possible for you to crawl out of bed in the morning, you have no idea how cruel and frightening we the sufferers find the new laws about opioid prescriptions.  The intent of including this topic in my blog is for fellow sufferers to have a place to share their fears, opinions, anger, and pain.  All comments made will be answered.

Author Unkown

 

 

 

 

 

 

Within the next month, I hope to have my message board online so that fellow sufferers will have a place to voice their thoughts.  Chats will begin within the next two weeks.  I will let you know the exact date and time.  Enjoy the remainder of the long weekend.

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August 24, 2019

Pain -Free photo 2106866 © Chrisharvey – Dreamstime.com

It is 4:56 AM and sleep eludes me.  I hate nights like this.  It seems to take days to make up for the lost sleep and during that time one feels like a miserable old hag, to put it bluntly.  One advantage of being retired means I have no obligations and can sleep during the day.

Hopefully, I will have the energy later today to head out to the local MCC thrift store to put up some books.  I used to love my excursions to Chapters in Winnipeg and would come home with at least six books.   Those days are in the past.  Paying the going rate of $32.00 to $38.00 a book is out of the question.  I have slowly been buying Kindle books to read on my iPad but it is not the same as holding a real book and turning the pages.

It seems like our summer will be short this year.  This past week the temperatures have gone down as low as 6C at night and the daytime temperatures hover between 19C and 24C.  Certainly not the “dog days of summer” we used to experience.  According to Wikipedia, the dog days or dog days of summer are the hot, sultry days of summer.  They were historically the period following the heliacal rising of the star system Sirius, which Greek and Roman astrology connected with heat, drought, sudden thunderstorms, lethargy, fever, mad dogs and bad luck.  They are now taken to be the hottest, most uncomfortable part of summer in the Northern Hemisphere.  The Old Farmer’s Almanac lists the traditional timing of the Dog Days: the 40 days beginning July 3 and ending August 11.

The following was recently brought to my attention and I can certainly understand how some people have been driven to end their constant pain. People with chronic pain who have been abandoned by their doctors and pharmacists are in many cases resorting to suicide.  If you have not suffered from chronic, debilitating, mind-numbing pain you have no idea how hopeless life can become.

Carlyn Zwarenstein, a freelance journalist and the author of Opium Eater writes in her article entitled “Let’s Have a Cautious but Compassionate Approach to Opioid Prescribing” that “to date, dozens of suicides after forced or coerced taper have been by and large ignored by restrictive prescribing advocates, although they are increasingly unnerving to other physicians. These suicides can be attributed variously, depending on the details of the case, to a cruel and sudden taper and the shock of patient abandonment or denial of the drug, and in other cases to the loss of function and quality of life a patient may experience months after a responsibly slow and technically “successful” taper, when an adequate alternative does not exist or is not found to deal with the underlying pain condition for which the opioid was prescribed. In this case, the successful taper to a currently acceptable, population-prevalence-of-risk-based morphine milligram equivalent (MME) is a case of “the operation was a success, but the patient died”.

The following article is a must-read for anyone suffering from chronic pain.  I know all too well how scary it is to be told that you will no longer receive medication to help with pain relief.  I, a 71-year-old woman who has not abused drugs in any way am being painted with the same brush as someone who is addicted to and purchases street drugs without a valid prescription.

Inside Canada’s ‘other opioid epidemic’ — patients cut off from medical painkillers.  Special to the National Post by Dawn Rae Downton.

My Year on Death Row:

It started in my feet, which ached constantly whether I wore flats, heels, trainers, or went barefoot. Physiotherapy and orthotics? Useless. Soon the ache climbed my legs, wrecking my knees and seizing up my hips, then my lower back. Eventually, I was diagnosed with sacroiliitis, an uncommon inflammatory arthritis that can follow trauma or infection, or, rarely, childbirth. Mine, cause unknown, made one orthopedist say my spine in an x-ray looked like a 90-year-old’s. I was 39.

Over the next few years, I made at least quarterly visits to a Halifax pain clinic. I tried acupuncture, meditation, mindfulness, massage, and yoga. I tried physical, occupational and cognitive behaviour therapy. I tried injections to block nerves and trigger points, IV lidocaine infusions, anti-inflammatories, anticonvulsants and antidepressants with names straight out of Tolkien — Elavil, Aventyl.  I tried cannabis and even (God help me) group therapy.  My pain screamed back. I couldn’t sit, lie down, stand or walk.

“One must have a mind of winter,” said Wallace Stevens, as if he’d gone through this, and so I did. I was hopeless, bleak — until, with opiates the very last resort under pain management protocol, I was trialed on transdermal fentanyl. It worked almost overnight. I was back!  And then, 12 years later, just like that, I wasn’t.

January 23, 2017.  Abruptly, at a routine appointment, my GP of 25 years announces she’ll no longer prescribe me fentanyl. Yes, she’d done it for more than a decade on the advice of my pain specialists. But now it’s me or the College of Physicians and Surgeons Nova Scotia, which licenses her and has called out “weak” doctors for “over-prescribing” narcotics.

“This is politics,” I say, snatching up my parka to leave.  “Only half politics,” she replies.  She dangles two Rxs in front of me to get me through the next couple of months — then says she’ll only give me the second one when I return to hear her out on the perils of opiates. I will have to sit through the sermon at the soup kitchen if I want my dinner. I don’t go.

About one million Canadians have by now had similar shocks. We’ve heard all we want to about the downsides of opioids, whatever they are. Unlike millions of other adults and children with chronic pain in this country (as many as 29 percents of us), we suffer so miserably and relentlessly that we rely on these drugs — oxycodone, hydromorphone, medical fentanyl — to lead remotely stable, productive lives.

At least we did until a new pain prescribing guideline came out last year. Developed by a team at McMaster University who pitched it to Health Canada, the avowed goal was to contain the opioid crisis — two decades of egregious over-prescribing that has turned patients into addicts and diverted deadly doses of narcotics to the street. Or so the story goes.

But many large-sample studies (including a 2016 review of 39,140 Ontarians) show that less than one half of one percent of medical users become addicted. Opiate prescriptions also fell 32 percent between 2009 and 2015, even as “opioid-related harms” keep climbing. Read the fine print on the latest national statistics — 4,000 “apparent opioid-related deaths” in 2017 alone — and you’ll find that the great majority involve other substances, illicit drugs like heroin and street fentanyl.

We have a tragic drug crisis. But medical analgesics are not what’s driving the addict overdoses and deaths that sparked Ottawa’s no-narcotics policy. And that policy has created a second crisis: “a climate of fear around opioid prescribing,” as three doctors put it in a letter to the Canadian Medical Association Journal, that has scapegoated many patients and left them with untreated pain.

For you, too, catastrophe is just a car crash away. I know a woman whose life changed when she slipped on an ice cube and split her pelvis. It could have been any of us. You’d be nuts to toss an old opiate fill, maybe that one you didn’t finish after dental surgery. It’s not like you’re going to get more if you need it.

Perhaps it’s easier to crack down on doctors than it is to intercept illegal opiates, like the tiny but potent shipments of powdered fentanyl mailed in from China. Except now both addicts and patients have dealers on speed-dial, and stories proliferate of patients who’ve died trying to replace their medications on the street.

People in intractable pain, who report worse quality of life than patients with other chronic conditions, also carry double the average suicide risk. They trade suicide plans in pain clinic waiting rooms. I have one, and I’ll use it if I have to.

Addiction researchers would say I’m depressed, or have a “substance use disorder.”  Pain is my disorder. Sacroiliitis is progressive. My back has had years to get worse.

February 20, 2017. It’s freezing. A wind tunnel grips the hospital; a gust of ice on the harbour knocks me off my feet. But I’m lucky, or so I think. When my GP cuts me off, I have my pain clinic to fall back on. My doctor, a longtime anesthetist, has always seen me quarterly. Today, he takes over my prescribing directly.

Still, it feels fraught. I hear about many GPs and pain specialists retiring early, quietly bailing in the adversarial atmosphere, while younger doctors are taught that medical opiates are useless poison. In the past four years, for want of practitioners, a dozen pain clinics in Nova Scotia have dwindled to four.

Those who do remain are being investigated if they write “too many” opioid prescriptions, or doses above recommended guidelines. As the pain specialist Mary Lynch describes the process in the Canadian Journal of Pain, doctors targeted for “educational” reviews are made to substantiate their patients’ treatment plans for months on end. Some doctors have lost their licenses, others their prescribing privileges. The rest, she writes, are duly intimidated.

An Ontario pain patient tells me his GP came back from “re-education utterly transformed into an anti-opioid zealot” who’d no longer prescribe for him — “not anything.”

I ask my doctor if he’s being investigated.  There’s his smile.  All’s fine, he says.  But he’s no longer allowed to treat me unless I sign Canada’s new quid pro quo “pain contract,” known euphemistically as a treatment agreement.” I must not sell or share my prescriptions, fill prescriptions at different pharmacies, and ask for an early refill for any reason. I even have to agree to be drug-tested (despite the Supreme Court’s ban on the practice).  No signature, no narcotics. Even then, many patients find themselves forcibly “tapered” or “discontinued” from longtime treatments.

Experts point out that these “agreements” destroy doctor-patient relationships built on years of trust.  I note that I’m signing under duress.

April 19, 2017. Between appointments comes “an awful leisure,” as Emily Dickinson called what we go through after a loss. My husband, whose first language is not communication, looks paler and grimmer every day. He doesn’t say much to me, but in an interview about how the new guideline is affecting us he says he feels “helpless … like we’re living on death row.” Listening to him, I’m breathless: I’ve been counting on him to save me.

I poke around the garden, cutting daffodils for the clinic.  Seeing my doctor’s face again, I’m elated. There’s my health record on the monitor, the ultrasound he uses for procedures, the gurney and its crisp white sheet on which we’ve sat together so often, laughing. He has an open, guileless face. He hates the tight spot we’re in.

With our doctors abandoning us, each new prescription feels like a reprieve. The keynote at the last meeting of Canada’s pain specialists was the American anesthetist Jane Ballantyne, who recommends that, instead of drugs, even patients with severe pain should use “coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity.” What can that mean?  How do you reduce “suffering” without reducing “pain intensity”?  (And why honour a figure known to patients as “No Pain Jane”?   The conference organizers didn’t answer my requests for comment.)

Even with fentanyl, I’m at best a five on the so-called numeric rating scale — where zero is no pain and ten is all pain. Without fentanyl at all, my pain is off the charts, a 15. Imagine your hand pressed onto a red-hot burner. Imagine you can’t lift it off.

I’m like my friend Mike from London, Ont., who tells me, “I will not survive the loss of these medications.” Mike has cervical dystonia, a horrific and rare condition, but even Ontario’s Exceptional Access Program won’t allow him the pain relief he needs, and representatives of the College of Physicians and Surgeons of Ontario attend his medical appointments without introducing themselves or asking his permission.

I tell my doctor about Mike. He writes my refill. He’s unusually quiet, but that’s OK: On death row, no news is always good news.

July 13, 2017. Or is it? Fear gnaws at me. Are you retiring? I ask my doctor repeatedly, trying to pin him down. He has three or four years in him yet, he says — as he always does. But he’s taken on many abandoned patients; his patient load has set off alarms on the province’s prescription database and he’s buried in paperwork. Today he seems withdrawn. He peers at the refill he writes, adding a squiggle to the progress note on the desk. I’m good at reading handwriting upside down, but not his.

I’m not an addict, but I’m beginning to act like one: single-minded, furtive, chock full of rescue fantasies and trapped in the hellish headspace the threat of pain creates.

I try to make him laugh. I published an op-ed about using fentanyl without being a junkie, I tell him, and I’m hearing from my past. I feel your pain, one old boyfriend writes to me. (He really does say that.) Another, as kind as I remember him all these years later, is horrified. He says what everyone says when I tell them what’s happening: it’s unimaginable. He also asks how he can help. He knows lawyers.

But for months I’ve canvassed scores of lawyers for one who’ll challenge the guideline and provincial medical colleges for malpractice and human rights infringement. The guideline contradicts Health Canada approvals for opiates for moderate to severe pain and violates our human rights protections under sections seven, eight, and 12 of the Charter. It also runs counter to the 1961 Single Convention on Narcotic Drugs signed by the UN and WHO and a resolution from the World Medical Association that “governments must ensure the adequate availability of controlled medicines, including opioids, for the relief of pain and suffering.”

READ MORE: Eels, opioids and very painful skull incisions: A brief history of pain treatment.

READ MORE: Why pain — and pain treatment — is still a grey area of medicine.  The Canadian Civil Liberties Association doesn’t answer my emails. The Ontario and Nova Scotia Human Rights Commissions inform callers they “don’t get involved in health.” My provincial Ombudsman responds to my complaint. But after asking me to produce an expert witness — a pain specialist who’s had to restart the prescriptions of many abandoned patients — they toss her testimony and retreat from an investigation.

Calgary’s Justice Centre for Constitutional Freedoms, meanwhile, spends months telling me they might help, then decides they don’t have the resources for a Charter challenge. (This is the same group who represented Lorne Grabher, the Nova Scotian denied a vanity license plate lest his last name offend anyone.)

Why am I fighting this fight in the first place? Treatment guidelines are developed by specialists who manage the conditions involved. So why wasn’t a single pain specialist allowed to vote on a guideline that now threatens me? And why have our medical colleges mandated so-called “recommendations” that cause so much pain? Even the guideline’s chief editor has called the awful fallout an “over-correction.”

October 3, 2017. I’m over-corrected.  I’m hardly in the door before my doctor sits me down. The clinic will close at year-end. The college demanded he complete countless dawn-to-midnight chart reviews that have exhausted him into retiring. By now he’s looking down, his face grey. “We won’t let you go without a…” he says. “We won’t….”  There’s a roar in my ears. I sobbed for ten minutes. Between us, we can think of no one he can refer me to who won’t “discontinue” me.

The very day I lose him, a young American friend with Ehlers-Danlos — a connective tissue disorder that can dislocate joints and break bones — loses his doctor, too. At 20, he’s planning suicide. I track down help for him in Kansas before I email every pain doctor and patient advocate I know in Canada, for me. Only “sorry” comes back, the very first from a pain specialist, a friend, I counted on. I also get pained replies from friends who thought they knew the doctors in their lives: but everyone has changed. We’ve stepped into a parallel universe, a wintry galaxy whose suns have set.

I email my American network, for me this time. A friend in Houston who lost six inches of the spine when she was mistaken for someone else in surgery has finally found a young Vietnamese pain doc who’ll treat me, too. She’ll pick me up at the airport; she’ll put me up. But carrying opiates, or even scripts for them, across the U.S. border? Yikes.

And then, out of the blue, an offer from a kind pain specialist in Alberta for quarterly visits, or at least the first, after which teleconferencing might do. It will buy me at least a year until he retires. A year to find another year, and so on.

While we work out details, I read a Scientific American story on the misinformation around overdose deaths. I email the author, a psychology professor at Columbia University, to thank him, briefly mentioning my situation, including my own suicide plan. An hour later, someone’s thundering down my door so hard the cats’ geyser up from the sofa and vanish: New York police have told Halifax police that I’m “insane,” a jumper. Eventually, they leave, satisfied that I’m staying alive for the moment (and agreeing I’m entirely sane to want to withdraw from a life no longer worth living). They’re so friendly I almost ask them where I can find dealers in Halifax.

November 30, 2017. One month left until the clinic closes and I’m out of pain relief. And then an anonymous voicemail summons me there. I arrive with my husband in the falling dark. Snow is coming down, the first of the year. It’s cold and late. Inside, most of the lights are off. Except for cleaners, we’re alone with my doctor. Media discovered in mid-November that the clinic was closing, throwing hundreds of patients out of care. Several broadcasters interviewed me — and here’s the surprise result. I’m to be saved, perhaps to be kept quiet. Arrangements have been made. I agree to keep them confidential. I can’t disclose them even now. They’ll be temporary. But it’s better than flying to Alberta. It’s the best I can get, and it’s something.

Still, it takes me days to realize I’ve had good news. Then I suffer survivors’ guilt. On my birthday, I hear from a woman in California who’s seen my op-ed and tracked me down.

I don’t know whether you’ve ever been asked this, she emails. I am housebound. I had a serious suicide attempt three months ago solely due to the intractable pain. Can you share your euthanasia plan? I have great trouble figuring out a plan.

I stare at her note. Is it legal to assist a cross-border suicide? Is it a trap? Am I seeing threats that don’t exist because of all that do?  My heart goes out to you, I write. I stare some more, then tell her what she wants to know. I go downstairs, wondering how I made it to this birthday and whether it will be my last since my life now depends — as it really always did — on another doctor and a prescription pad. I can’t know now that the coming months will be quiet and calm for me compared to this one. I blow out the candles on my cake. I make a wish for mercy for the California woman, whatever mercy means anymore in these cold, dark days; whatever it means for my own body of pain and my mind of winter.  – By Dawn Rae Downton

Thank you, Dawn Rae Downton, for having the courage to write the above story.  What a powerful story describing the cruel, mean and deceptive ways our government and the “powers that be” are treating people whose only “sin” is having uncontrollable pain.

Back to me.  How do I describe the pain that ravages my body?  How many times have I tried to lie as still as possible and think to myself, “If only I can bear this for 10 more minutes.”  I literally wish my life away in 10-minute increments.  How many times have I wondered whether I will still have the ability to think and function at the end of a horrendous period of pain?  Will my mind finally give up and take me to a place of utter darkness?  When will I no longer have the strength to fight the pain and try to function as a normal human being?   The saying that people do not die of pain is no longer true.

 

 

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