The Redefining of Life – October 2006

The majority of the following piece was written as a blog post during 2008, a tad over ten years ago now, under the title ‘The Painful Reality About Doctors & Quackery’.

It was basically a one off vent of frustration, telling my story from 2006 to 2008.

I began that blog post with this paragraph…

In recent years I have had cause to really look at who and what “Medical Professionals” hold themselves out to be, I cannot believe some of the stories I’ve heard and even what I have endured myself in the last 10 years. Below is my story of the last 2 years, one of many stories I could share about the ignorance and lack of understanding given by a group of “Professionals” we entrust our most personal and vulnerable selves to in times of need.

You know, as I posted that piece on the 13th of August 2008 I thought I had experienced, seen and heard just about everything through my nightmare of 3 Car Accidents from 1990 to 1996, along with Inflammatory Bowel Disease that was unresponsive to treatment for the majority of 9 years by 2006 and having to fight tooth and nail to get a hysterectomy I was in desperate need of at the age of 32.

I never considered at the time, in 2008, that I would be sitting here, (some 12 years after my life descended into existence rather than life), adding to that story as I have and will continue to do … I especially did not considered for one moment I would not have recovered and be living a fully active life throughout my 40s.

Before I go any further I need to just point out that what occurred during October 2006 was not a case of an injury as a result of weight training. Repeated injury to my lower back, inflammation from illness and pregnancy complications was a consistent part of my life well before 2006.

The 26th of October 2006 – The Walls Came Crashing Down!
Prior to October 2006 I was no stranger to pain, in fact I had built up an extremely high tolerance to pain of various forms as a result of all the injuries and illness. As it was, lessons in tolerating frequent, severely debilitating pain from the age of 12 grounded me in the knowledge that my body could act against me in a very cruel manner.

However, all of that tolerance to pain changed during October of 2006!

I had begun personal training sessions in a gym once again, having taken a 12-18 month break due to ill health and having a hysterectomy. So when my lower back started to niggle rather loudly with brief moments of struggling to put one foot in front of the other accompanied by an intensely sharp but fleeting pain, I tried to write it off as just overdoing it in the gym.

Rather than stop my gym sessions I asked my personal trainer to lower the weight I was lifting a tad, so I could build up to my previous levels of weight more gradually. I also asked him to add some assisted stretches into my program to help me regain the flexibility I had lost during my hiatus.

Deep down I knew it was more than overdoing my workouts, but I was so determined that my body was not going to dictate against what I so desperately wanted to achieve in the way of a sculpted body. There was also the social aspect of the gym that I had missed so much during my time away, a social connection that I did not want to lose again.

Thursday the 26th of October came, it was week 3 of being back in the gym, it was also the day I ceased living my life and began my existence through unimaginable pain, along with progressive physical and cognitive dysfunction.

That morning as I walked toward the front door to leave for the gym I was suddenly paralysed by a gripping pain through my back for at least a couple of minutes, unable to put one foot in front of the other at all … I stood in the middle of the room braced by the pain, barely able to breathe, uncertain of my balance and desperate to regain the ability to move through the stride that I had just raised my heal slightly off of the floor to move through.

As the pain released it’s grip, my body allowed me to slowly move through the stride I had begun to take, then maneuver to the side of the room where I took hold of a sideboard to regain my breath and balance for a moment.

That was the moment I realised that this time the pain was not going anywhere!

This time the pain had set in to stay!

Once I had caught my breath and found the strength to move to the phone, I cancelled my session in the gym and went to see my GP who ordered a CT scan for that same day. After I had those scans done I returned to my GP with the results and was told that I had 2 disc bulges in my lower back and that my L5-S1 disc was crushed. (As crushed was the word used in that consultation, that is the word I used in relation to my condition.)

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The highlighted areas showing the sources of pain at the lower part of the spine.

What this meant in medical terms I wasn’t really sure because it was so far over my head at that time … All I knew for sure, in physical terms, was that it was a pain I wouldn’t inflict on my worst enemy.

The Radiologist listed his findings from those scans as …

  • L4-L5, The disc slightly narrowed and there is mid posterior annular bulging indenting the anterior thecal sac. The L4 nerve root exit is uncompromised.
  • L5-S1, The degenerated disc is narrowed and there is mild posterior annular bulging just touching the anterior thecal sac. The L5 nerve roots exit uncompromised and the lateral recesses are clear. The facet joints are preserved at all levels.

I was told to go home and rest as it was going to take 18 months to 2 years to heal. I was also told to lose weight, but don’t walk up any hills and take it very easy…… The main thing was to rest and simply endure the pain.

Throughout the first month the pain radiated from my lower back, through my buttocks, down my thighs, front and back, finally biting in at my calves and some days went down into my feet.

As the months passed by my knees and ankles became inflamed and swollen with fluid. I had periodic soreness of the ribs and a feeling of windedness like someone had slammed their fist hard, right in the middle of my shoulder blades. Finally every muscle in my body had become stiff and tight trying to compensate for the level of pain and dysfunction that had taken over my entire body.

In short on most days my posture reassembled that of a gorilla, butt stuck out, knees bent trying to balance through the awkwardness of the pain and stiffness of the muscles that were held taut … Half hunched over to one side or the other … I could only laugh to keep myself from crying and make jokes that I was de-evolving into a primate.

But the laughter never lasted long as I often found myself sinking to new depths of hopelessness in reaction to the pain.

(Please take note of the words I use, I said hopelessness because it was a normal human response to a rationally hopeless situation that required the cause dealt with, rather than me being medicated for depression. My emotional state was always secondary to my physical state and had been since the first car accident during 1990.)

Throughout a number of months the pain that I was so sure could never get any worst than it was in the initial stages actually increased … A decent nights sleep became non existent, my stress levels were raised so high I couldn’t even tolerate being in the same room as my family and the hopelessness of ever being free from the pain had me praying every night that I would not have to open my eyes to another day.

Quite honestly, the pain was so intolerable the only thing I wanted … Was to die!

I was not the slightest bit suicidal, I just wanted the pain to STOP!

I went back to my GP several times over that period of time but because I have a condition called Ulcerative Colitis my GP would not prescribe anti-inflammatories or strong pain medication, I was continually told I would just have to ride out the pain.

I was furious with this doctor, if he was enduring the pain I was living with there is no way he would do it without any form of medication. Much less watch his wife suffer through what my husband was having to watch me suffer through.

It was also during these first months that I remembered another significant medical event that occurred on the 11th of August 2000. An event for which I was seeing another GP at that time, at the same clinic, my situation significant enough that she had seen fit to send me to the local hospital Emergency Department.

In the August 2000 event I was unable to stand properly and barely able to walk due to a very similar pain, so similar in fact that I would say the episodes were linked in same way or another … (A pain event that tied in with several other noteworthy gastrointestinal and gynecological symptoms, including my body exhibiting shock from a significant sudden blood loss which gave rise to the back and leg pain.) 

At the time, August 2000, I was told there was no known cause for my condition with no follow up required to get to the bottom of any of it, not the pain, nor the significant gastrointestinal blood loss that had sent my body into shock … Accessing my hospital records during 2015-2016 I discovered there was a radiology finding recorded that day, a finding that was not disclosed to me, which was Sacroiliitis, inflammation of the Sacroiliac Joint, acute in August of 2000.

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Looking at the front of the pelvis the Sacroiliac or SI Joint is made up of the Sacrum and Ilium, the Sacrum central at the lower part of the spine, the Ilium either side of the Sacrum. These areas are highlighted by the green arrows … The Sacroiliac Joint is then where the Sacrum and Ilium meet and form the joint either side as is highlighted by the red arrow.

Back to 2006 … Prior to the onset of my situation my father had also been diagnosed with a crushed disc, while his was clearly just as painful, our conditions and responses to treatment just didn’t match up. Then one day while visiting my parents I was handed a brochure my father had seen at his GP Clinic about Ankylosing Spodylitis.

Many of my symptoms matched, so I spoke to my GP about it, asking if it was possible that this was the reason for my pain. Then I made the mistake of asking for a blood test to see if I carried a Gene called HLA-B27, which was often found in people with medical conditions such as Ankylosing Spodylitis and Ulcerative Colitis.

My GP at this point became extremely irritated with me and staunchly refused to give me the blood test that I had requested on such a reasonable basis … The fact is I had been living with active Ulcerative Colitis for the majority of 9 years, largely unresponsive to treatment at that point.

So, the blood test couldn’t hurt considering that many people with Ulcerative Colitis carry this gene … Right?

I could not win whichever way I turned with this doctor, no help with pain management and yet refusal to investigate the possibility of something more underlying his initial diagnosis.

This appointment was my first major lesson in my education and understanding that I, As The Patient, should Never believe I have the right to educate myself regarding the deterioration that was occurring within my own body. Much less should I ever believe that I had any right to discuss or question diagnosis, even in the most tactful and respectful manner, not even if there was a reasonable basis to do so.

It was clear in this GP’s eyes that he was the doctor, I was the patient and any conclusion he had come to about my situation was far beyond my capacity of reason and understanding, including my own knowledge of my body when it came to the experience of symptoms … In his eyes I was to accept all his diagnosis without doubt and continue to endure horrendous pain without question.

After that appointment I gave up trying to seek any help and lived on whatever over the counter pain medications would bring the most relief, mainly Paracetamol with Codeine, until I was having to double the prescribed amount to bring any relief.

Within a short time of doubling the medications I chose to stop using over the counter medications because the pain was so severe there was no point in taking any over the counter pain relief anyway. I was also fearful that if I continued to consume over the counter medications to extent I was, and beyond, I would only end up overdosing.

I also knew, having active Ulcerative Colitis that I may have been achieving some minor degree of relief in the rest of my body but it was only going to increase discomfort and cause complications within my digestive system.

With all this going on I had to continue living my life … We had a family gasfitting and plumbing business to keep running, that I oversaw the daily office work for. I had three children full time and my step-son visiting during school holidays, there were children to drive to school, there was a house to take care of and meals needing to be cooked for our family.

I rested when I could, removed myself from the family whenever I could no longer cope and I cried my way through sleepless nights as every single small movement of my body woke me with torturous pain that continued my desire to never wake from sleep again.

The Life That Still Had to Be Lived
To this point our family had been somewhat dysfunctional. Firstly we were a step family with unreasonable expectations placed upon us by many people from numerous directions, all with their own agendas and little regard for our family unit. As a result I had very little control over any of the goings on in my own home from one year to the next. Which had been the case since the first few years after Daniel and I had married during November of 1997.

I had also been bleeding daily from my gastrointestinal system for a good part of 9 years by 2006, added to which were 2 pregnancies during 1998 & 1999 that I suffered Hyperemesis Gravidarum throughout while also continuing to bleed daily from my digestive system, and then there was a hysterectomy during April of 2005 … Compounding it all, was enduring the chronic pain from all the car accident injuries.

I was often gossiped about in various circles as being lazy and ill-equipped with intelligence enough to know how to take care of my home. I was repeatedly instructed on how I could better maintain my home by empathy void individuals who had no compassion, even with the knowledge of my deteriorating health.

When it came to my children (all yours, mine and ours of them), I struggled tremendously to keep order in our home amongst four rowdy boys amid the illness, pain and dysfunction of my body. The uninvited interference in our family life from those outside sources with their own agendas, leaving me no room for the routine or the disciplined boundaries that four strong willed boys needed.

All in all, it was a recipe for boiling over into irritation, frustration and repeated melt down on my part … The mother I had always believed I would be giving way to a woman I was ashamed of, even before 2006. The lovingly instilled, well ordered, calm home life I had always envisaged for my own family, as a wife and mother, no where to be seen.  

It was nothing if not organised chaos, but we had found our way through until 2006, making the best we could of a challenging situation … Me always forging on with my Pick Up & Push On / She’ll Be Right attitude, always believing that my lot in this life wasn’t that bad and that other people were far worse off than me!

Moving on from October 26, 2006 though, our lives and home completely fell apart behind closed doors.

To the outside world I became a fat lazy woman with a bad back, a limp, a bubbly personality and a big smile … A big smile that masked a whole world of hurt and dysfunction within my body that no one would believe, much less acknowledge. A big smile that hid far too much heartbreak of family dysfunction and unreasonable expectations that had turned long held dreams into nightmares.

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Can’t say it was a joy to live with me throughout it all. My boys, being boys, taking moments to laugh at the grumpy woman I had become … We all laugh now at the “I mean it! Mum Glare”, now that the boys are all grown men. But it wasn’t much fun at the time, for far too long … There are still days that life in general gets these glares from me, days when enough of the dysfunction and pain is simply, enough!

Seeking The Second Opinion
After about 9 months with no improvement at all and the pain being unbearable to live with I spoke with a local pharmacist about my situation who suggested it was time for a second opinion.

This second opinion blew me away with the absolute stupidity that fell out of the GP’s mouth during the consultation.

The GP I saw only looked at my size, he refused point blank to look at my CT scans and kindly explained to me that the area I have damaged is……. Wait for it……

“The Remnants of The Dorsal Fin Left Over From the Fish We Evolved From!” and went on to tell me I was, and I quote, “Too Fat For The Remnants of My Dorsal Fin!” That is the exact wording he uttered.

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The word dorsal may have some context when we are talking about back pain, however the exact context in which this GP referenced it was absurd. Especially when he had refused to even look at the scans I had provided him with or take into account any of my history.

After he had informed me of my problem this GP then went on to lecture about my weight and diet.

During this lecture on my weight I was asked what I had for breakfast that morning and I simply muttered, “Toast!” in amongst the tears I was choking back. I was then asked why I would even think that I needed to eat anything for breakfast and the following statements were made …

  • “You have enough body fat to sustain you for 6 months without food so you should just stop eating all together!”
  • “All you need, is to stop being lazy and start walking!”
  • He asked rhetorically, “You are the wife and mother?” Then he stated. “At a guess your husband and children must be obese too, since you would obviously feed them a heavily processed diet!”
  • He even suggested all my weekly shopping was full of foods with specifically coloured packaging which is used as a marketing strategy to get ‘People Like Me’ to eat more junk food. His exact words, “People Like You to eat more junk food!”

His insinuation was simple, I was a fat, uneducated, unintelligent, lazy housewife who was easily conned by skillful marketing tactics and all I needed was to stop being lazy and lose weight.

His patronising tone in no way disguised behind the calm, caring facade he believed he was displaying to educate me in how I could better help myself.

Then … He tried to sell me a high protein meal replacement product that he had used to lose weight himself after getting so big that he began to have sciatica pain!

Once he’d brought me to a place of utter self loathing, breaking my spirit completely amidst tears of defeat, he then apologized for his bluntness and sent me on my way.

While I can sit back and laugh about the entire “Dorsal Fin” statement now, I still have to admit that I left this GP that day with an even greater despair and honestly, this time feeling very much suicidal … Not that I actually wanted to kill myself … Just wishing I could disappear from the pain within my body and the nastiness of this life altogether.

Especially the nastiness, disbelief and dismissal, along with accusations of fraud, neuroticism and hypochondria that I had encountered far too often since 1990 by people in professions where compassion and empathy should be the highest priority, but in many cases was lacking altogether.

Hey, Fat Lazy Housewife, WALK That Pain Off!
The second doctor saw my weight but what he failed to do was simply listen as I explained that I had tried countless times to start walking just 5-10 minutes a day, (as I had been taught throughout my training in Care Work and Rehabilitation) … Only to find myself in greater pain and completely crippled for prolonged periods of time after only several days of walking.

What the second GP and my regular GP failed to understand was that the amount of pain I was in would have brought them to their knees, as it had me, if they had to endure the pain I was enduring 24 hours a day 7 days a week with NO HELP or support at all from anyone.

All I could access was unfounded demeaning personal attacks and condescension as they aired their preconceived notions based upon my size and gender.

In my regular GPs case this was particularly frustrating as he was also my GP throughout the time that I joined a gym after my pregnancies, while I went through massive weight loss and when I began studying to become a personal trainer.

My regular GP knew my battle against my own body where weight was concerned, irrespective of diet. He knew the length of time I had been battling gastrointestinal illness, he knew my battle from a gynaecological stand point … And, he knew full well how hard I had kept pushing myself to keep going against what my body was dictating through all the illness and pain of injury.

Regardless of knowing within myself what these GPs were saying was wrong, I convinced myself what these GPs were saying was right … I was fat, I was lazy and I just needed to get off my backside and walk!

So, I started walking once again. This time walking a 1km block that our road was a part of … Forget time, forget hills, I was going to keep going until I was slim enough to be respected again.

As I walked my thoughts went back and forth … From utter self hatred and contemptuous disgust toward myself for the fat lazy woman I’d obviously become … To then hating the doctors for only seeing a fat lazy woman and not the woman I truly was.

Only this time as I pushed myself harder to push past the agonising pain and keep going irrespective of how much I was hurting, my body retaliated in a spectacular manner, as if it were screaming at me!

“I’m trying to get you to understand Something is Wrong! You need to STOP!”

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How could I listen to my own body when the only people capable of helping me had not only dismissed me, but since my first car accident during 1990 had actually done significant harm to me through accusations of fraud, neuroticism and hypochondria.

Now … I was not only having trouble walking … I was waking up during the night paralysed from the waist down as if every joint in my legs and hips were locked in place by the pain. Each muscle non-responsive to my desire to shift position in an effort to ease the agonising discomfort.

Unable to move for minutes at a time that felt like an eternity, tears streaming down my face, the violent scream within me from the torturous pain of my body and the absolute fear of what was happening to me was suffocated by my inability to utter a sound as my jaw clenched shut in reaction to my body’s torment.

After several times of this occurring throughout the night during a number of weeks I taught myself to breathe through the pain and concentrate on wriggling my toes to break the hold on my body, a torrent of tears in reaction to the pain and justifiable fear flowed each and every time.

While it may only have been a handful of times I experienced these terrifying moments through the night, they are still a significant event in the bigger picture of what was happening to my body and the extent to which I had pushed my body in reaction to being dismissed as nothing more than fat and lazy.

Attempt Number 3 to Access Medical Assistance
After a further year of untreated pain I fearfully sought help through a physiotherapist. I say fearfully as I was terrified I would be judged yet again due to my weight and the issue at hand not be seen.

I found a great physiotherapist who noted some key issues but who could not understand the amount of pain I was in for what was detected in the initial CT scans, nor did the areas of stiffness, restriction of movement and pain seem to tie together with the CT scans … Finally, however, I had found someone willing to listen and help. Someone who knew I needed help to get past this pain.

Thankfully the physiotherapist I had seen suggested I seek a third opinion, he was very supportive and compassionate, he understood completely all I had been through. But more than anything he could see through the facade of my smile and determined strength … He could see the dark place I was in due to the lack of support I had encountered to that point.

I decided to take the physiotherapist’s advice and made an appointment at another GP Clinic, this time with a female GP … I was scared to the point of almost cancelling the appointment but I knew I needed help and that I had to keep trying to find someone who would listen to me without preconceived judgment.

The GP I saw asked my medical history and as soon as I said Ulcerative Colitis she said, “There is an Arthritis that is linked to Ulcerative Colitis. Have you heard of it?” I answered with, “Yes, it is called Ankylosing Spondylitis and I asked my old GP to do the blood test but he refused.”

Quite understandably she was baffled by his refusal given that my joints were very obviously affected every time I had a significant flare involving my gastrointestinal system. She ordered all the blood work for the various forms of arthritis and ordered new X-rays and CT scans.

Almost 2 years since this episode started during 2006 and I finally had a GP who was actually hearing me.

As if all this time spent untreated wasn’t bad enough this GP looked at my old CT scan and said, “You don’t have a crushed disc anyway, it is bulging not crushed at all!”

The blood tests came back with the result of a HLB-27 Gene as Negative, which I saw as a good thing. However, I was informed with all of the other symptoms it can still be Ankylosing Spondylitis with a negative gene.

My scans and X-rays showed the Disc Bulges were still there however this time they did show Bilateral Sacroiliitis!

So there I was almost 2 years after this chapter started, still without anyway of managing the pain or any potential for treatment until I was due to see a Rheumatologist and an Orthopaedic Surgeon during September of 2008.

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February 2008 – Lex my ever present companion through this journey from 2006 to 2014 … Ashamed of the massive weight gain through my involuntary sedentary lifestyle, unable to find comfort in any position … But maybe a smile for the camera, to make the boys stop taking my picture!

The Wrap Up to This (Not Yet) Concluded Chapter
The physical pain symptoms from my lower back were so strong during the early years after 2006 they distracted from all the other physical and cognitive symptoms that were also occurring at the same time.

Cognitive changes that were minor in the beginning but began to interfere with daily life, both personally and as a family, changes that have continued to evolve and impact us all. Other physical changes in relation to various forms of dysfunction, pain, sensation, muscle symptoms and understandable fatigue also factor in.

Since the diagnosis of Sacroiliitis on the 21st of July 2008 I have continued to have Chronic Sacroiliitis, with no medical professional in any field apart from one single GP wanting to know why my SI Joints continue to show inflammation for what is now over a decade.

As for the diagnosed case of Sacroiliitis in August of 2000 and three other episodes of sudden significant blood loss that were accompanied by the same Sacroiliitis and whole body shock symptoms … To my mind it has obviously been a relevant part of my history for far longer than any medical professional will recognise to this point. All the while these episodes and the history consistently being dismissed, as is the relevance of the car accidents in any possible SI Joint Dysfunction Syndrome scenario.

Throughout 2012-2013 I did have a slight reprieve, regaining more function and strength to a certain degree, however no full recovery was ever achieved and after that minor reprieve or remission period my body and mind have continued along their dysfunctional path.

During the years scans have shown spinal degeneration in various discs throughout my spine, top to bottom, along with the chronic nature of the Sacroiliitis.

The more complex my scenario becomes as a result of no root cause being sought and no treatment implemented, the more my situation is referenced back to any number of dismissive catch-all diagnosis, as well as natural wear and tear of the aging process.

We’ll just forget that I was a 17 year old teenager when this began, and that I was in the prime of my life at almost 34 years of age when I became a twisted, contorted cripple who could no longer function on a daily bases … Never mind the extent of a medical history that includes symptoms of Autoimmune Disease, along with Car Accident Injuries that include Brain Trauma Injury and Significant Whiplash.

Some days when I read other people’s stories I wish I was the only one with this story to tell because it makes me so angry, if not deeply saddened, that anyone else would have to endure as I have.

Then there are the days that I am thankful for someone else’s story giving me the hope to continue, shining a light on a new information to explore or giving me new perspective. The reassurance that I am not alone in my medical journey to regain quality of life giving support I am not sure the writers would ever be aware of.

As for my story, it continues!