This article is a must-read for anyone suffering from chronic pain. My chronic pain began after I drank Radio Active Iodine, which I now know to be a poison, to supposedly treat my Graves disease. Last Friday I finally received a diagnosis and I was ecstatic. Sounds weird I know but to finally have a specialist give you a reason for the horrendous, debilitating pain is an enormous relief. However, 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 70-year-old woman who has not abused drugs in any way am 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 National Post
By Dawn Rae Downton
Illustrations by Mike Faille
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 “sorrys” come 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.
Summer has come and gone for another year. It seems as soon as September 1st rolls around the temperature literally changes overnight. It is no longer warm enough at night to heat the pool; cools off much too quickly. Fall happens to be my favourite time of year, spring my least favourite time of year.
The end of July and beginning of August brought back many memories of the wonderful times we spent with a dear friend Dennis Joiner. Abbotsford businessman Dennis Brian Joiner, 49, was shot to death sometime at the end of July beginning of August 1998. After missing for five days his body was found in a bushy area a few paces off a dirt road in the 15600-block of 34th Avenue, in Surrey, B.C. I wonder how much longer it will take for the murderers to be publically identified. I wonder whether there will be any deathbed confessions. It is sad and disgusting that persons who know better have spread horrible rumors and vicious lies about this kind and generous man. You have to wonder what could possibly be their motive. Our family has been a recipient of Dennis’s kindness, hospitality, and generosity and I am sure there are many more families that given the chance would say the same. It is time to stop spreading these lies and rumors about Dennis.
This following probably sounds weird to those of you who do not have undiagnosed medical problems. This past Friday I was incredibly relieved and very happy to finally receive a diagnosis after suffering from chronic pain since 1998. The pain began after I, being ignorant of the side effects, drank Radio Active Iodine to kill my thyroid. Graves disease, an autoimmune disease, was the reason for drinking this poison. The rheumatologist I was referred to in July ordered tests that provided a reason for my pain. I have arthritis in both ankles, the left ankle worse than the right. Also, have arthritis and bone spurs in both knees, arthritis in both hips, the left hip worse than the right because of bursitis. I have arthritis in my lower spine as well as in my shoulders. You cannot imagine the relief to finally have a reason for the constant pain.
After my appointment with the radiologist, I continued on to the Grace Hospital for an
MRI of my poor liver. For someone who did not drink alcohol because the alcohol caused horrendous migraines to end up with autoimmune liver disease (cirrhosis of the liver) does not seem quite fair but then who said life was fair? Thankfully the MRI was done with contrast which gives a much clearer result. Now I wait to see if my liver damage has remained the same or whether it has gotten worse. Hopefully, I will know in a week.
It has been years since I have done any kind of needlework. I have decided to spend time this fall and winter working on some petite point projects and smocking projects. There is a special little girl that would look adorable in a smocked dress. I started a petite point project today, the first of a series of Ukrainian dancers. My grandson was a Ukrainian dancer for eight years. The finished pictures will be a keepsake for him.
The last few weeks have been rather busy for us. July began with a visit from our son and daughter-in=-law who live in Boston. The time they spent with us went by much too quickly. I should be used to airports and saying goodbye since this was a common occurrence in our lives for the last 46 years. However, it never gets easier.
My latest doctor’s appointment was on July 9th. Apparently, the blood test results showed that my Sed rate and ANA levels were higher than normal. I will be seeing a specialist in the near future. At my next doctor’s appointment, I will have to ask him why whenever I exert myself even just a little like cleaning out the dishwasher I sweat to the point where it is running off my head and down my face. When this begins I often feel dizzy and exhausted. Another annoying symptom is incredibly itchy skin which at times produces a rash. Any ideas or suggestions from my readers would be much appreciated.
On July 14th we drove into Winnipeg so I could meet up with a dear friend from Edmonton. Jan was very involved with my message board, website, and chat. Peter relaxed in our hotel room with the dogs while Jan and I spent Saturday evening having supper and catching up. Sunday the three of us met for breakfast. After breakfast, we headed to the Forks and spent the afternoon browsing in the shops. It was so good to see Jan again.
This weekend we drove to Portage la Prairie to attend the wedding of Peter’s good friend Stan. Stan’s sister Sandy came out for the wedding from her home in Prince Edward Island. It was so good to see Sandy again after 50 some years. Sandy and I were friends and classmates in Elementary school and High School. After she married and moved away we continued to stay in touch through letters and eventually Facebook.
This absolutely crushing fatigue that I have been experiencing for the last few months is affecting my life in a negative way. It seems to get harder and harder to find joy in my everyday life. If I give in to the fatigue I would sleep on and off for 24 hours a day. Most mornings it is incredibly difficult to work up the energy to get out of bed. I am finding that things I would normally look forward too I am wishing away. Of course, trying to hide the fatigue from family and friends only increases the hopeless feeling that this nightmare will never end.
Enough complaining for tonight. Until next time…….
Summer is finally here. We have had temperatures of 30C since Monday. Today it reached a high of 35C. Years ago my sister and I were quite comfortable sitting all afternoon on the beach at Falcon Lake. I could not expose myself to the sun like that these days.
June 9th my husband and I spent the afternoon at our daughter’s event in Winnipeg. The event was a public fun day for the Society for the Ethical Treatment of Kraken. I spent several days polishing my 5 silver tea services for the High Tea held during the latter part of the event. My daughter made the most impressive food for the tea. She constantly amazes me with her talents and creative genius.
Grandson came over on the Father’s Day weekend. He arrived Saturday morning and stayed until Sunday afternoon. We discussed the particulars of his upcoming move. He will be moving in with us on July 10th and starting a new job on July 11th.
Spent this afternoon getting my blood done and getting an x-ray of my right shoulder, right hip and right knee. My new doctor is being very thorough and is really making an effort in finding out what ails me. After the blood work and x-ray, we met friends for coffee or I should say ice cream and smoothies. Too hot for coffee.
I got some new books to read. Downloaded the new Jonathan Kellerman book called “Night Moves” from Amazon. The two actual books I got are “The Knowledge” by Martha Grimes and “The Seagull” by Ann Cleeves. A friend on Facebook introduced me to Ann Cleeves and I have been reading her books ever since.
I have been rather discouraged and depressed these last few weeks so I decided instead of moaning and groaning about my aches and pains I would post the following poem/article. Hope it helps at least one of you, fellow sufferers.
“Hi. My name is Graves Disease…
I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hyperthyroid.
I am now velcroed to you for life.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyway I please.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
I can make you hyper, not just your thyroid. Then make you drop like a stone; people will probably start to think you have manic depression, doctors certainly will.
Remember when you and energy ran around together and had fun?
I took energy from you and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can make you feel very anxious or very depressed. I can also cause other mental health problems.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin; the sky is the limit with me.
I can take you, you won’t be able to remember what you wanted to say two minutes ago. I can even make you forget words, names, and events.
I can make you lose weight no matter how much you eat.
I can make your thyroid gland swell so much it hurts to eat while making you so hungry you have to eat all day long.
I can make your eyes swell so that they pop out of the socket.
Some of my other autoimmune disease friends often join me, giving you, even more, to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons.
I thrive on stress. You may have a family history of me. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
Even when they do know it’s me, you’ll spend years trying the right medications, you may have the parts I attack removed or killed to get rid of me. That won’t work; I’ll still be here, and I’ll still attack you.
There are so many other ways I can make you sick and miserable, the list is endless; high cholesterol, gallbladder issues, blood pressure issues, blood sugar issues, heart issues among others. That’s probably me.
Can’t get pregnant, or have had a miscarriage?
That’s probably me too.
Teeth and gum problems? TMJ? I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how sick you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
Your family, friends, and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I am.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back. They will call you a hypochondriac while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Graves Disease.” Shared by Angie Andews Falwell.
Days like today are miserable. I woke up with horrendous fatigue and an overall feeling of doom and gloom. What causes pain to be so much worse on some days when medication does not help at all? I slept till 3:00 PM this afternoon and felt very guilty for wasting a day. Sometimes the guilt is almost as bad as the pain. I feel guilty that I left the kitchen a mess overnight. I feel guilty that the house is untidy. Most of all I feel guilty that my husband has to put up with these pathetic times when all I do is sleep. When I think about the future I feel both sad and angry that this is what my life will be like until the end. No peace and no joy.
Yesterday afternoon I watched the Royal Wedding. Britbox carried the event all day so I did not have to get up at 4:30 AM to watch. By the way, Britbox is a great service featuring British TV programs and movies at a very reasonable monthly price. Another service featuring British TV programs, movies as well as Swedish, Australian, Danish programs. is called Acorn. Check them out online. Today I found that CBS is streaming its’s programs. At this rate, there is no need for cable TV.
Since I have nothing interesting to post I will continue my writing on another day. I hope you all are having a better Sunday than I am.
A Daily Struggle – Poem About Living With Incurable Chronic Pain
I may not look ill but I am,
I suffer pains, you just can’t understand.
The pain and stresses I go through each day,
you’ll be surprised at some of the things that I’m going to say.
The fear of living in continuous pain,
will affect your body and your brain.
Never knowing what the future will be,
will I have more pain, how will I live, pay my bills and will I be granted disability.
These are just a few to name,
they put your stomach in knots and leave paranoia in your brain.
The part of not knowing is the most stressing you see,
stress causes flare-ups and more misery.
Depression will then start to set in,
you’ll feel hopeless,
a burden and alone to begin.
Every single emotion floods through the mind,
not one can you focus on,
it’s too difficult to unwind.
You will cry, you will rage, you will seclude yourself.
You will feel as no one cares or is willing to help.
Soon you will notice you don’t have as many friends.
They and family have abandoned you and you’re at your wit’s end.
You’ll be frustrated at doctors and nurses alike,
they don’t seem to listen to you or write you off with a strike.
People will say it’s all in your head,
get up, go to work, why are you laying in bed.
Unless you have it, you will never understand or know,
this is but a glimpse of it, I’m telling you so.
I am the voice,
the one who can explain,
what pains we feel and what goes on in our brain.
Listen to me and heed my advice,
our pain is real and is like being gutted by fire and ice.
We want doctors who listen,
to medicate us right,
not be afraid of the government,
we are human and have rights.
We know there is nothing that will make our pain and stresses go away,
we just want to be comfortable in any sort of way.
We are survivors and warriors you see and I’ll tell you just why.
It takes one you see to get up each day and try.
Try to get out of bed and do what needs to be done,
being the sacrificial lamb for all our loved ones.
Trying to do everything that everyone wants,
while going through tremendous pain,
our smiles a front.
Many different masks we wear,
it’s just what we do.
So you don’t have to see the pain we’re really going through.
It drains us and leaves us tired and weak,
not to mention we are unable to sleep.
Up all night, missing who we once use to be.
Asking ourselves repeatedly, Oh God why me.
This is what we go through and rest a sure it’s not a game.
This is what’s like to live in chronic pain.
– From The Chronicle of The Insomniac Writer
About the Author –
My name is Brian McGrath and I am a Chronic Pain Warrior. I suffer from chronic pain due to a failed back surgery with instrumentation. Neuropathy, Disc Degenerative Disease, Depression, as well as pain from other surgical procedures that were necessary due to my fall at work. I am currently 45 and disabled, unable to work again from a work-related accident that occurred when I was 39. Throughout all of this, I feel my daughter has suffered the most. She was only 7 when this happened to me and I was unable to do a lot of the things that a father should do with his child. She and I both missed out on memories to be made due to this.
Seems I have trouble getting motivated to keep my blog current. I have good intentions and actually plan on blogging at least once a week but for some reason, my good intentions keep going down the drain. Again I promise to try to do better.
Patches and Gaby are adjusting really well. Patches has been friendly and affectionate right from the get-go but Gaby has taken her time to show affection. Last week she finally wagged her little tail. They love their walks. They have only been with us for a few weeks but I can not imagine a life without them.
Cousins Morley and Ann drove up from Minneapolis on April 22nd and we were able to meet them for supper and spend a lovely evening together. We always look forward to their visits.
Healthwise this April was another “pain in the butt”. The barometric pressure certainly did a number on my poor “ole” bones. Just a few weeks ago we were still experiencing temperatures at night as low as -17C. Another problem that decided to plague me yet again was Restless Leg Syndrome. My legs jerked and spasmed for 24 hours. Mind you all that moving around contributed to me losing 10 lbs. Restless Leg Syndrome affects my body from my hips down to my toes. My dear friend Jan from New Jersey tells me that when she has problems with Restless Leg Syndrome it can take over her whole body. I cannot imagine what a nightmare that must be. A few days after the nightmare of my spasming legs my blood pressure decided to crash. I felt really weak, dizzy and extremely tired for two days before I finally checked my blood pressure. Imagine my surprise when it was 80/53. Checked it again a few hours later and it was 80/60. The following day it got up to 113/60. A few days after the blood pressure incidents I woke up with a raging bladder infection. By 700 AM I had consumed three-quarters of a gallon jug of Cranberry Cocktail. Mind you it did help the burning sensation but that was about all. Finally at 1:30 PM I took my sorry butt to the nearest walk-in clinic where I was told I had a rampant infection. Thank goodness for antibiotics. Enough about my trials and tribulations. May will hopefully be a more enjoyable month.
Wednesday Afternoon Chat 1:00 PM
Friday the 13th has turned out to be a lucky day. We have been talking about getting another dog for quite some time. What has held us back is our age. My husband is worried about what would happen if we were no longer able to care for the dog. He does have a point. This morning I noticed that Animal Rescue in our city needed a foster home for the two dogs pictured above. Thankfully we qualify for the role of foster parents and should be getting these two ragamuffins in a few days. I can hardly wait. This house has been missing a dog for quite some time.
This week has been a bit better pain wise. If only the weather would stabilize and give me and others who suffer constant chronic pain a break. The barometric pressure can cause havoc with my body. However, over the years I have developed strategies for coping with the pain. When the pain gets really bad I try to sleep as much as possible. When not sleeping I will crash on the couch and try to keep my mind off the discomfort by reading. Reading has saved what little sanity I have left. I have learned not to make plans to far in advance. The degree of chronic pain and discomfort varies from day to day. Some days I take my meds as soon as I wake up and I am able to function almost like a normal person. Other days I take my meds as soon as I wake up but relief eludes me. Whoever decides how much pain to hand out decided a year ago that I needed more torment by allowing my body to grow bone spurs on my right knee. The pain can be excruciating. Two weeks ago I was diagnosed with bone spurs on my left knee. When I feel myself getting very angry and annoyed at my health situation I remind myself that there are many others who suffer much more than I do.
My daughter finished the Fascinator she was making for a bride to wear at her upcoming wedding. She also made a miniature Fascinator for the bride’s daughter. My daughter is such a talented and creative person and I am so proud of her. She tries and most often is successful in the keeping the monster called Bipolar Disorder at bay.
The end of March was a difficult time for me. My 70th birthday on March 28th really threw me for a loop. Quite frankly, I have no idea why turning 70 affected me in such a negative way. Our only grandchild, Benjamin turned 24 on April 5th.
This year Easter happened between my birthday and Benjamin’s birthday. Our daughter once again invited us to her house on Easter Sunday not only to celebrate Easter but to celebrate my birthday and Benjamin’s birthday. Natasha made a fabulous lunch which included her famous scalloped potatoes, my favourite gingerbread cake, and Benjamin’s favourite banana bread cake. Thank you, Natasha, for once again making our family get together a very special time.
Natasha and her dad spent alternate weekends in February and March working on a High striker for The Society of Ethical Treatment of Kraken Tea in June. Here is Natasha’s comment copied from her Facebook page, “Our High striker, or Strength- tester, is almost ready. Just a few more tweaks and it will be ready for the Tea. My dad and I made it together. We had a wonderful and hilarious time engineering this beasty. Thanks so much, dad!!! I have missed these projects with my dad. He is 71 and I am spending as much quality time with him as I can. These are the true quality moments in life. The ones that make you think, make you cherish, and are the memories you will have to keep”.
As you know my husband and I have been searching for a new family doctor. After much nonsense from the Doctor Find Association, we were finally given the name of a doctor in Winnipeg whose clinic is a 45-minute drive from our house. My husband saw him first and was very impressed with the appointment. Thanks to this new doctor Peter now has a cardiologist. I had my appointment last week and I too was very impressed. All my fears and worries came to nothing; he prescribed and renewed my medications without a hesitation. Talk about a load being lifted from my shoulders.