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.

Posted in Autoimmune disease | 2 Comments

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.

Posted in Autoimmune disease | 2 Comments

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.

 

Posted in Autoimmune disease | 4 Comments

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.

Posted in Autoimmune disease | Leave a comment

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.

 

 

Posted in Autoimmune disease | 2 Comments

August 12, 2019

 

Free photo 2106866 © Chrisharvey – Dreamstime.com

A NIH quote states that “Chronic pain is often defined as any pain lasting more than 12 weeks. Whereas acute pain is a normal sensation that alerts us to possible injury, chronic pain is very different.  Other health problems, such as fatigue, sleep disturbance, decreased appetite, and mood changes, often accompany chronic pain.”

As I am sure you all must think that pain dominates my life and you are right.  I go to bed at night worried about how much sleep I will get and worried about how much pain I will have when I wake up.  I worry about what I will be able to accomplish the next day.  Will the pain be overwhelming?  Will I be able to accomplish simple household tasks?  Will I be able to concentrate on reading a book?

My next family doctor appointment is in October.  The anxiety, stress, and worry has already begun.  Will this be the appointment when he decides that I no longer need pain medication?  Will this be the appointment when he decides my pain is insignificant?    Will he agree with the report from the Sports Medicine Rheumatologist who diagnosed me with arthritis in my left ankle and severe arthritis in my right ankle, arthritis in both knees, bone spurs and chondrocalcinosis in both knees, arthritis in both hips and in my spine.  Will this diagnosis be enough to allow me to continue the use of pain medication?

How do we impress upon our doctors the severity and frequency of our pain?  How do we make them believe that we are truly suffering and not just after “drugs”?  It is a proven fact that chronic pain sufferers do not run from doctor to doctor trying to obtain duplicate prescriptions.  Chronic pain sufferers do not have the energy to indulge in this form of drug-seeking.  Who is going to be an advocate for people who suffer from chronic pain?  Who is going to help them deal with all the problems associated with chronic pain?   So many questions and so few answers.

Pharmaceutical salespersons love to push new drugs and often give doctors’ perks in exchange for prescribing their drugs.   The medical profession is in the process of bad-mouthing opioids and taking pain relief from people who are in agony.   The medication that the drug companies push and doctors prescribe as a substitute for opioid medications are not the “be all” and “end all”.

Since the Centers for Disease Control and Prevention published its guideline for prescribing opioids for chronic pain in March 2016, pain patients have experienced increasing difficulty getting needed opioid medication due to denials by pharmacists and insurance providers.  Things have gotten so far out of hand that certain groups are threatening to sue the drug companies for making opioids.  Obviously, anyone involved in making opioids virtually impossible to obtain has never experienced intense pain.

According to data published in an article called  “Overzealous use of the CDC’s” the opioid prescribing guideline is harming pain patients.  The CDC suggests that illegally manufactured fentanyl, its analogs, and heroin are responsible for well over half of all overdose deaths. Stimulants like cocaine and methamphetamines are responsible for another third. Deaths related to prescription opioids come next in line, although many of those who died were not the intended recipient of the prescribed medication. In addition, most deaths involve multiple substances that are used in combination, often including alcohol.

The vast majority of people who report misusing prescription opioids did not get them from a doctor under medical supervision, and as many as 70 percent reported prior use of substances like cocaine and methamphetamines.

Confusing the abuse of opioids with their legitimate use and treating all opioids whether illegal or a legal prescription the same is punishing and stigmatizing patients for whom opioid painkillers are necessary and medically appropriate.  It is abusing patients who would not be able to get out of bed in the morning were it not for the pain relief of opioid medication.  Most legitimate users of opioids will tell you that the medication never takes the pain away completely but it makes the pain bearable.

What is very concerning is that some physicians who specialize in pain management are leaving their practices.  Others are tapering their patients off of opioid medication only because the doctors are afraid of losing their licenses or facing criminal charges.  This happened to me.  I had to change doctors because my family doctor, Dr. NoName accepted another position in a hospital.  I had a month to find a new family doctor.  At the time I thought I was very fortunate.  The new doctor, Dr. Eve was wonderful, capable of listening to my health problems, not afraid of referring me to a specialist and had no problem continuing my prescription for an opioid medication to help deal with my pain.  Three years later I was told a fairy tale.  This lovely doctor who I trusted and believed to actually be concerned about my health issues told me she was leaving her practice.  I had to find yet another family doctor.  Dr. Eve informed me that she had registered me with a new family doctor, Dr. Creeper.  She promised me that he would prescribe for me the same medications that she had prescribed.  You can imagine my horror the first time I saw Dr. Creeper.  He accused me of being a drug addict.  He told me that no one needed opioids for pain relief and that he was going to stop all the doctors in the clinic from prescribing opioids.  He went on to tell me that all the affluent people in our town were addicted to opioids.  Dr. Creeper is too kind of a name.  Well, talk about feeling betrayed.  Three months after leaving her practice Dr. Eve was back accepting new patients.  She would not accept former patients.  This was Dr. Eve’s way of getting rid of her patients who required opioid prescriptions.

According to Overzealous use of the CDC’s opioid prescribing guideline is harming pain patients  The laudable goal of these laws and policies is to stem the tide of unprecedented overdose deaths and addiction in the U.S. But here are three interesting facts: Opioid prescribing is currently at an 18-year low. The rate of prescribing opioids has dropped every year since 2011. Yet drug overdose deaths have skyrocketed since then.

Certainly, doctors have the ability to note the difference between someone in pain or someone looking for a high.  To punish 71-year-old women who are experiencing pain by withholding pain medication is disgusting and cruel.  In fact, withholding pain medication from anyone who is living with chronic pain is diabolical.

My hands are tired and I need to get some sleep so I will get off my soapbox and crawl into bed.  For the last two nights, I have been waking up every two hours because of the pain.  Sleep deprivation is not nice.

I have been negligent in continuing the Monday evening chats.  Since many people are busy outdoors during the summer months I have decided to continue the chats beginning in September.  The time and date will be announced in a week or so.  If you are suffering from an autoimmune disease and/or chronic fatigue and chronic pain please feel free to join our chats.

Posted in Autoimmune disease | Tagged , , , , , , , | Leave a comment

August 5, 2019

Since my grandson and his partner moved in we have a little or a rather huge critter living in our basement. The cat belongs to our grandson’s partner and our two animals had a bit of trouble adjusting to this creature downstairs. At first, whenever Lunar escaped from his home and snuck up the stairs my two creatures would bark and chase poor Lunar back down the stairs. Things have improved and now when Gaby starts her barking which sounds more like yelling she is wagging her tail. When I shake my finger at her and tell her to be quiet, she listens, at least for a while.   Patches only barks when Gaby tells him to. Sounds crazy, I know, but she has a way of nudging him so that he knows exactly what she expects him to do. Here are a few pictures of the creatures in our zoo.

 

 

 

 

 

 

 

My pain during these last few weeks has been quite severe again.  This morning I had had enough.  When this happens, I tend to hide away in my den and write.

A researcher at McGill University says that for the most part, the health care community focuses on medical advances and shows little interest in finding treatments for chronic pain. (iStock)  CBC News.

I felt it was important to add this article, published September 28, 2013, to my blog in case my readers did not notice it online.  The article reads as follows.

For many Canadian doctors, managing pain is ‘not a high priority’.  The headlines are full of breakthroughs heralding new treatments and cures for a host of debilitating and lethal diseases and conditions.  But for the millions of Canadians who suffer from chronic pain, relief – let alone a cure – is still elusive.

According to the Canadian Pain Society, one in five Canadians suffers from chronic pain. Yet treatment has not been a priority in our health care system; instead, people who complain of chronic pain are all too often derided as whiners.  They say doctors are incredulous that their pain – which might have no apparent cause – could possibly be that bad.  Or else they’re just counseled to grin and bear it.

That nonchalance reflects an attitude in western cultures, where pain is largely considered a sign of virtue and a test of character, says Dr. Fernando Cervero, director of the Alan Edwards Centre for Research on Pain at McGill University.

Attitudes slowly changing

But Dr. Cervero notes that social attitudes are changing. Patients and their advocates are demanding better and more timely treatment for chronic pain. But the medical establishment has not kept pace with those changes. For example, veterinary students receive much more training in pain management than medical students.

The societal change in attitudes toward pain “has not completely permeated all the way to the medical schools,” Dr. Cervero told The Sunday Edition’s, Michael Enright. “In a curriculum that is getting more and more busy with more and more discoveries in medicine – and we all have to fight for time in the medical curriculum – pain is not a high priority.”

Dr. Cervero, who will be speaking at an international symposium on pain at McGill University says more must be done to make the relief of pain, especially for chronic pain sufferers, a top priority in Canadian health care.

“It’s not right for people to suffer unnecessarily,” he said.

It seems that medical professionals, both in Canada and the United States,  have not listened to someone like Dr. Cervero.  Instead of helping people who suffer from chronic pain, our doctors have made many of our lives hell on earth.  They certainly have done nothing to make the relief of chronic pain a top priority in Canadian health care.  Many doctors are afraid of prescribing pain medication because they fear censure.   What about the patient’s fear?

According to the internet, chronic pain patients are not only having problems getting opioid medication, but most are also finding it hard just finding a  doctor willing to treat their pain, according to a new survey.  Over 70 percent of patients said they are no longer being prescribed opioid medication or are getting a lower dose.   Mar 16, 2017

The following Canadian Code of Ethics for Doctors is an interesting read.  There are quite a number of points that my doctors have not bothered to follow.  Sadly, I and many others are the ones who suffer.

CMA Code of Ethics  (Update 2004) Last reviewed March 2018: Still Relevant

Fundamental Responsibilities:

1. Consider first the well-being of the patient.
2. Practice the profession of medicine in a manner that treats the patient with dignity and as a person worthy of respect.
3. Provide for appropriate care for your patient, even when cure is no longer possible, including physical comfort and spiritual and psychosocial support.
4. Consider the well-being of society in matters affecting health.
5. Practice the art and science of medicine competently, with integrity and without impairment.
6. Engage in lifelong learning to maintain and improve your professional knowledge, skills, and attitudes.
7. Resist any influence or interference that could undermine your professional integrity.
8. Contribute to the development of the medical profession, whether through clinical practice, research, teaching, administration or advocating on behalf of the profession or the public.
9. Refuse to participate in or support practices that violate basic human rights.
10. Promote and maintain your own health and well-being.

Responsibilities to the Patient – General Responsibilities

11. Recognize and disclose conflicts of interest that arise in the course of your professional duties and activities, and resolve them in the best interest of patients.
12. Inform your patient when your personal values would influence the recommendation or practice of any medical procedure that the patient needs or wants.
13. Do not exploit patients for personal advantage.
14. Take all reasonable steps to prevent harm to patients; should harm occur, disclose it to the patient.
15. Recognize your limitations and, when indicated, recommend or seek additional opinions and services.
16. In determining professional fees to patients for non-insured services, consider both the nature of the service provided and the ability of the patient to pay, and be prepared to discuss the fee with the patient.

Initiating and Dissolving a Patient-Physician Relationship

17. In providing medical service, do not discriminate against any patient on such grounds as age, gender, marital status, medical condition, national or ethnic origin, physical or mental disability, political affiliation, race, religion, sexual orientation, or socioeconomic status. This does not abrogate the physician’s right to refuse to accept a patient for legitimate reasons.
18. Provide whatever appropriate assistance you can to any person with an urgent need for medical care.
19. Having accepted professional responsibility for a patient, continue to provide services until they are no longer required or wanted; until another suitable physician has assumed responsibility for the patient; or until the patient has been given reasonable notice that you intend to terminate the relationship.
20. Limit treatment of yourself or members of your immediate family to minor or emergency services and only when another physician is not readily available; there should be no fee for such treatment.

Communication, Decision Making, and Consent

21. Provide your patients with the information they need to make informed decisions about their medical care, and answer their questions to the best of your ability.
22. Make every reasonable effort to communicate with your patients in such a way that information exchanged is understood.
23. Recommend only those diagnostic and therapeutic services that you consider to be beneficial to your patient or to others. If a service is recommended for the benefit of others, as for example in matters of public health, inform your patient of this fact and proceed only with explicit informed consent or where required by law.
24. Respect the right of a competent patient to accept or reject any medical care recommended.
25. Recognize the need to balance the developing competency of minors and the role of families in medical decision-making. Respect the autonomy of those minors who are authorized to consent to treatment.
26. Respect your patient’s reasonable request for a second opinion from a physician of the patient’s choice.
27. Ascertain wherever possible and recognize your patient’s wishes about the initiation, continuation or cessation of life-sustaining treatment.
28. Respect the intentions of an incompetent patient as they were expressed (e.g., through a valid advance directive or proxy designation) before the patient became incompetent.
29. When the intentions of an incompetent patient are unknown and when no formal mechanism for making treatment decisions is in place, render such treatment as you believe to be in accordance with the patient’s values or, if these are unknown, the patient’s best interests.
30. Be considerate of the patient’s family and significant others and cooperate with them in the patient’s interest.

Privacy and Confidentiality

31. Protect the personal health information of your patients.
32. Provide information reasonable in the circumstances to patients about the reasons for the collection, use, and disclosure of their personal health information.
33. Be aware of your patient’s rights with respect to the collection, use, disclosure and access to their personal health information; ensure that such information is recorded accurately.
34. Avoid public discussions or comments about patients that could reasonably be seen as revealing confidential or identifying information.
35. Disclose your patients’ personal health information to third parties only with their consent, or as provided for by law, such as when the maintenance of confidentiality would result in a significant risk of substantial harm to others or, in the case of incompetent patients, to the patients themselves. In such cases take all reasonable steps to inform the patients that the usual requirements for confidentiality will be breached.
36. When acting on behalf of a third party, take reasonable steps to ensure that the patient understands the nature and extent of your responsibility to the third party.
37. Upon a patient’s request, provide the patient or a third party with a copy of his or her medical record, unless there is a compelling reason to believe that information contained in the record will result in substantial harm to the patient or others.

Research

38. Ensure that any research in which you participate is evaluated both scientifically and ethically and is approved by a research ethics board that meets current standards of practice.
39. Inform the potential research subject, or proxy, about the purpose of the study, its source of funding, nature and relative probability of harms and benefits, and the nature of your participation including any compensation.
40. Before proceeding with the study, obtain the informed consent of the subject, or proxy, and advise prospective subjects that they have the right to decline or withdraw from the study at any time, without prejudice to their ongoing care.

Responsibilities to Society 

41. Recognize that community, society and the environment are important factors in the health of individual patients.
42. Recognize the profession’s responsibility to society in matters relating to public health, health education, environmental protection, legislation affecting the health or well-being of the community and the need for testimony at judicial proceedings.
43. Recognize the responsibility of physicians to promote equitable access to health care resources.
44. Use health care resources prudently.
45. Recognize a responsibility to give generally held opinions of the profession when interpreting scientific knowledge to the public; when presenting an opinion that is contrary to the generally held opinion of the profession, so indicate.

Responsibilities to the Profession

46. Recognize that the self-regulation of the profession is a privilege and that each physician has a continuing responsibility to merit this privilege and to support its institutions.
47. Be willing to teach and learn from medical students, residents, other colleagues, and other health professionals.
48. Avoid impugning the reputation of colleagues for personal motives; however, report to the appropriate authority any unprofessional conduct by colleagues.
49. Be willing to participate in peer review of other physicians and to undergo review by your peers. Enter into associations, contracts, and agreements only if you can maintain your professional integrity and safeguard the interests of your patients.
50. Avoid promoting, as a member of the medical profession, any service (except your own) or product for personal gain.
51. Do not keep secret from colleagues the diagnostic or therapeutic agents and procedures that you employ.
52. Collaborate with other physicians and health professionals in the care of patients and the functioning and improvement of health services. Treat your colleagues with dignity and as persons worthy of respect.

Responsibilities to Oneself

53. Seek help from colleagues and appropriately qualified professionals for personal problems that might adversely affect your service to patients, society or the profession.
54. Protect and enhance your own health and well being by identifying those stress factors in your professional and personal lives that can be managed by developing and practicing appropriate coping strategies.

Posted in Autoimmune disease | Leave a comment

July 19, 2019

It has been too long since I have written a blog post. I do have a good excuse, at least I think I do. Since March I have been busy working on my Zacharias family research project and am very happy to announce that it went live during the July 1st long weekend.  After a few glitches, and these are expected, it is exactly as I had imagined it would be. Funny how when something captures your imagination and keeps your brain busy, chronic pain is not as hard to deal with.  As of this week, I have entered the names and details of 2,278 descendants of Wilhelm Zacharias who was born in the year 1700.  The site also includes 219 family histories and documents, 14 videos, and 13 albums of pictures. This week I continued the task of translating just over 150 letters written by the descendants of Wilhelm Zacharias who lived in the former Soviet Union and survived Hitler’s camps and Stalin’s gulags. The letters are dated from the early 1920s to the late 1970s.  Reading this material gives me a different perspective on my pain issues. I suffer pain, yes, but I suffer it in the comfort of my own home without having to worry about what horrific events my family might have to endure in the coming days.   Since I still have 21 big binders of research material my project will keep me busy for quite some time.

We finally had some old fashioned thunderstorms and rain this past week. In fact, one night it rained so hard that the back yard turned into a lake. We had a bit of water come into the basement but it was quickly cleaned up with a few towels. The problems that caused the flooding are the wretched window wells that house builders here in Manitoba insist on using with basement windows. This time the drainage pipe in the window well was clogged by silt. Thankfully, after a bit of elbow grease on the part of my husband and grandson the water could drain again. Whoever thought up the concept of these window wells was a few sandwiches short of a picnic.  As you can see by the video below our puppies enjoyed the fresh rainwater in the ditches.

Last month I received the results of the last MRI of my liver and lab work. Thankfully there has been no change.  It is always such a relief to hear those words, “no change.”  I have an MRI and lab work done every six months.  Alcohol was something I never enjoyed because of the migraine headaches it gave me so you can imagine my horror and surprise when I was told that I had cirrhosis of the liver.  Autoimmune diseases are nasty.

My hydrangeas started blooming this week and my gladiolas are eight inches high.  Because I no longer can take care of flower beds we put out the minimum amount of plants every spring.  The two urns on either side of the garage door each get a basket of petunias.  The hydrangeas, hostas, and roses are perennials.  We added the gladiolas, one of my favourite flowers, this spring.

A dear friend of mine lost her husband a week ago Monday. He was recuperating from knee surgery and had gone to the kitchen to make coffee that Monday morning.  My friend heard this terrible crash and when she got to the kitchen he was gone.  I cannot imagine how lonely she must feel.  They were a couple that just belonged together.  This past week Monday another friend lost her husband after he had battled cancer for two years.  He had been doing quite well so his sudden death was not expected.  She too will feel an incredible void in her life.

It is 4:30 AM and I have yet to get even a few minutes of sleep.  I hate nights like this when sleep eludes me.  It takes forever to catch up after just one sleepless night which might be due to old age.  Like my mom always said, whoever coined the phrase the “Golden years” did not have a clue.

In case any of you need a good laugh check out the video below.  I laughed so hard I had tears running down my face.

Here is a picture of my own Mrs. Brown.  My husband took this picture and emailed it to me a while ago while I was in the hospital.   It certainly kept the staff amused.  Well, I think I will crawl back into bed and see if sleep will finally decide to visit me tonight.  Hope you all have a great weekend.

Posted in Autoimmune disease | Tagged , , , , | Leave a comment

June 4, 2019

320808_10150277377626314_3256158_n

My mom and me

It has been too long since I have posted, but my genealogy project has kept my fingers and brain rather busy.  At my last doctor’s appointment, my blood pressure was within normal levels which is always a cause for joy.  He referred to my pain issues as generalized arthritis, which was such a relief and a blessing to hear.  Those of you without pain issues will think I belong in the loony bin after a statement like this, but knowing the reason for the pain makes life so much easier.   Get some pain and you will understand.   The doctor again confirmed that he felt I should qualify for a free tummy tuck and breast reduction because of the weight I have lost and managed to keep off.  Believe me, I can hardly wait for that day.  The removable of the excess flab will probably reduce my weight by quite a few more pounds.  I can always hope!

Don’t you just hate it when pharmaceutical companies have a shortage on a pill you need?  For the last three months, my pharmacy has not been able to access the 25 mg Cytomel pill and because of this, I have to take 5 of the 5mg pills.  I guess I should be happy that they are available.

We had a lovely visit with my cousin and his wife for the American Memorial day weekend.  When they come up to Canada, we go out for supper and then come back to our house for dessert.  Their little granddaughter is a sweetheart.  Her Grandma Ann,

pinkpianoan accomplished pianist, got her granddaughter this incredibly cute piano.  What an amazing gift.  The video of the little girl playing her piano is priceless.

The genealogy I have been working on has been both interesting and frustrating.  The TNG software I purchased from Darrin Lythgoe, the developer is amazing.  If you are interested in genealogy I highly recommend this software.  I made one big error and that was trusting the software engineer from Codeable to make the TNG software and WordPress compatible.  There is a TNG plugin for WordPress.   I needed Woo Commerce to sell subscriptions and keep track of memberships once my site is live.  Thus the Codeable software engineer.  I specifically stated that my WordPress welcome page and Woo Commerce extensions namely Subscriptions and Memberships needed to be linked to my TNG site.  He was also to make the TNG site available to paid-up members only.  Imagine my total disbelief and horror to be told that the only way this might be possible if I paid over a thousand dollars after I had already paid for services not rendered.

So far I have entered over 2140 names on my genealogy site called The Zacharias Family Tree.  I have also entered over 100 pictures and 25 family histories and stories.  Translating old letters that came from Russia was both interesting and heartbreaking.  These people suffered horribly under the Hitler, Lenin, and Stalin regimes.  Stalin killed many more people than Hitler.  The Yalta Agreement made between Churchill, Roosevelt and Stalin made life hell on earth for many of them.   I admire these people and I wonder if I would have had the stamina to keep going under the same conditions.  The following is a picture of my mother’s parents, grandparents, aunts, uncles, and cousins.  It was taken shortly before my mom and her parents left their village in the middle of the night and made their way out of the former Soviet Union to freedom.

Familypicturerussia

Posted in Autoimmune disease | 2 Comments

May 2, 2019

It finally looks like spring might be making some headways here in Manitoba.  It snowed during the last week of April but luckily we got very little compared to some places in Western Manitoba.  Apparently, Calgary and Edmonton got hit pretty hard.  I remember going camping at Kananaskis just after our move to Calgary.  The weather had been gorgeous when we left home that Saturday afternoon.  In fact, it was so nice we wore shorts.  Coming from Manitoba we had no idea how quickly the weather could change.  By the time we had supper at the campground it was raining and by the time we went to bed, it was snowing.  We were practically frozen solid by the time morning arrived.  The showers in the campground were packed with people waiting to warm up with hot water.  We were finally escorted out of the park and to the Trans Canada highway by the RCMP.  So snow in Calgary at the end of April does not surprise me.  Today it is a sunny 9 C and apparently later today it is supposed to reach 16C.  Almost swimming pool weather.

Earlier in April, I was plagued by severe pain in my back around the hip area.  Since I hate going to the doctor or even worse emergency I kept putting off the inevitable.  On April 20th I finally could no longer handle the added pain so off to the walk-in clinic.   A note on the clinic door advised us that they were full up so we had no other choice but the emergency at the local hospital.  We arrived at 12:30 PM.  It took till 7:00 PM to give me a bottle to pee in and a diagnosis of a kidney infection.  I must say that the doctor I finally saw was very thorough and pleasant to deal with.  The antibiotics were a nightmare.  The pills were an inch long and about 30 minutes after taking one I experienced severe nausea.  Gravol shots can be a blessing.

As I mentioned in a previous post I have revived my genealogy project, a project I started in the early 80s.  I have been researching my grandfather’s mother’s side of the family.  So far I have been able to trace the family back to 1700 and have added 900 names.  Right now I am busy translating letters from relatives in the Soviet Union to relatives in Canada.  The letters were written between 1920 and 1950 and what makes the translations more difficult is that the authors used High German, Platdeutsch and Russian in their letters.  The stories told in these letters are incredibly sad and it boggles my mind how these people retained their sanity under the conditions they had to live with.   Men were arrested at night and set to the Gulags never to be seen again, political prisoners, including women and children, were put on trains in cattle cars and shipped to Stalin and Hitler’s camps and children starved to death just to name a few atrocities.   When compared to what these people lived through my complaints are ridiculously minor.

I must get back to my project so will close for today.  Hope all my readers have a great weekend.

 

This video was taken earlier this month.  It shows two crows busy pulling strips of bark off a tree in our back yard.

Posted in Autoimmune disease | Leave a comment