Roger That
Photo: Alexander Hayes - Fiona Stanley Hospital
For as long as I recall I've pushed this body, this container that I was born into to its known limits and beyond that too. I am writing the following in the hope that this will perhaps help anyone else reading this with their own lives in their own way.
Some people will accuse me of fishing for sympathy but as I've discovered the sharing of this type of information in some cases will save a life or at best help others who are in similar situations fighting in life rather than living a life worth living.
At age 14 I attended a consultation with a rheumatologist in Rockdale, Sydney after presenting with sacroiliac pain [ https://en.wikipedia.org/wiki/Sacroiliac_joint ] to a doctor repeatedly over months before. I was informed that the blood tests that had been taken the week before confirmed I was Human Leukocyte Antigen HLA-B27 positive [ https://en.wikipedia.org/wiki/HLA-B27 ].
The stats run this way:
"...The prevalence of HLA-B27 varies markedly in the general population. For example, about 8% of Caucasians, 4% of North Africans, 2-9% of Chinese, and 0.1-0.5% of persons of Japanese descent possess the gene that codes for this antigen.[1] In northern Scandinavia (Lapland), 24% of people are HLA-B27 positive, while 1.8% have associated ankylosing spondylitis."
So you can see by those statistics that the condition that is genetically transmitted and transmuted, is also much higher per population average for Caucasians and that is me of course. Another interesting factor that speaks to the rarity or likelihood of ever exhibiting traits of Ankylosing Spondylitis is as follows:
"... For example, while 90% of people with ankylosing spondylitis (AS) are HLA-B27 positive, only a small fraction of people with HLA-B27 ever develop AS. People who are HLA-B27 positive are more likely to experience early onset AS than HLA-B27 negative individuals."
Well as fate would have it I am one of the few people who exhibits and endures the painful effects of the degenerative condition. I am also of the few people who also exhibit other associated pathological conditions as a result of being HLA-B27 positive.
"... In addition to its association with ankylosing spondylitis, HLA-B27 is implicated in other types of seronegative spondyloarthropathy[7] as well, such as reactive arthritis (formerly known as Reiter's Syndrome), certain eye disorders such as acute anterior uveitis and iritis, psoriatic arthritis and ulcerative colitis-associated spondyloarthritis. The shared association with HLA-B27 leads to increased clustering of these diseases.[8] "
So, in summary here is how my Ankylosing Spondylitis (AS) condition has manifested itself in me over the years progressing from teenager to adulthood using a Wong-Baker Faces Pain Rating Scale [ https://en.wikipedia.org/wiki/Wong-Baker_Faces_Pain_Rating_Scale ] and also noting how many times I've presented at hospitals for assessment, pain relief or admission for treatment for that pain-specific or combined:
Sacroiliac pain - is the joint between the sacrum and the bones of the pelvis - chronic and debilitating ( 6-8 out of 10) - two (2) hospitalisations;
Uveitis - is the inflammation of the uvea, the pigmented layer that lies between the inner retina and the outer fibrous layer composed of the sclera and cornea - https://en.wikipedia.org/wiki/Uveitis (8 -10 out of 10) - eleven (11) hospitalisations with two of those as an ophthalmic emergency;
Pericarditis - which is an inflammation of the pericardium, heart tissue sac - full blackout with two (2) ambulance admissions to emergency - (10 out of 10) - https://en.wikipedia.org/wiki/Pericarditis
Knee Effusions - swelling of the knee (colloquially known as water on the knee) occurs when excess synovial fluid accumulates in or around the knee joint - (8 - 10 out of 10) three hospitalizations with two (2) knee debridements and one full knee reconstruction- https://en.wikipedia.org/wiki/Debridement.
As per another post [ https://www.alexanderhayes.com/journal/at-the-heart-of-the-issue ] earlier I am now waiting here in the Fiona Stanley Hospital in Perth having been flown down last week by the Royal Flying Doctors service of Australia. So far they have ruled out a heart attack yet have run countless ECG's and cardiovascular tests including an angiogram and talk of installing an Implantable Loop Recorder (ILR) or cardiac monitor which is inserted in the chest cavity under the skin.
There maybe some correlation also with some Vagal Syncopy of which I've fainted a zillion times as a teenager and that of my hypertension and arrhythmia, low BPMs and all the other manifestations which are putting everyone's career spikes on alert.
Discussions are underway about the possibility that there may be some correlation between my early days of treatments using high doses of prednisone which is a corticosteroid, the drug Sulfasalazine, the anti-inflammatory Meloxicam (Mobic), copious quantities of Oxycodones (Endone) and Morphine, non-steroidal anti-inflammatory drug (NSAIDs) Ibuforen, acetaminophen or APAPs (Panadol), opioids like Tramadol and probably another ten which I cant think of at this very minute, with that of my present condition. Oh, thats right, add every known inhalation medication such as Intal ( Cromolyn sodium), countless Ventolin puffers Salbutamol, also known as albuterol and marketed as Ventolin) and preventers like Fluticasone propionate (Flixotide or Becotide) which are hormones that predominantly affect the metabolism of carbohydrates all which did havoc to my teeth and my lungs.
It's obvious to anyone that western medicines have failed me over and over and none more so that now although I must admit the hypertension medication Valsartan which is an angiotensin II receptor antagonist (commonly called an ARB, or angiotensin receptor blocker) that I am on now has probably saved my life on more than one occasion.
Of most likely correlation though between all this drug overdose above and my current (pending) prognosis is the tie between those steroidal and opioid drugs which have lowered and most likely damaged my adrenal functioning to produce the natural corticosteroid known as cortisol.
According to Wikipedia:
"...Cortisol is a steroid hormone, in the glucocorticoid class of hormones. When used as a medication, it is known as hydrocortisone. It is produced in humans by the zona fasciculata of the adrenal cortex within the adrenal gland.[1] It is released in response to stress and low blood-glucose concentration. It functions to increase blood sugar through gluconeogenesis, to suppress the immune system, and to aid in the metabolism of fat, protein, and carbohydrates.[2] It also decreases bone formation.[3] "
It makes logical sense that if you slam your body with drugs that replace the natural functioning of the human body with those of the pharmaceuticals duopoly then the fallout is going to happen through the very functions and organs such as the eyes, heart, and liver as a result. I'm also reflecting on how many times I've been hospitalized with things like deep vein thrombosis (DVT) and then been pumped full of Heparin or Warfarin with are anticoagulants to treat and prevent deep vein thrombosis, pulmonary embolism, and arterial thromboembolism of which in my case I'd had a clot prevented from reaching the brain via my jugular vein.
Anyway, after all of that, I sat with a super sexy young doctor here the other night who has an interest in Ankylosing Spondylitis who believes there is a direct correlation between diet, exercise, and medical functioning. In some ways, through the years I've known all of this through various and many hospitalizations
More specifically her advice is as follows:
Low glycemic index diet - low sugar or no sugar forever;
Yoga - high level (Asana) low impact flexor;
Zero alcohol - never, ever.
Zero tobacco - never, ever.
Fatty foods - limited, salt-free
NSAIDS for pain - Diclofenac (Voltaren) or Ibuforen at most
In essence, it would appear that I've used up the 6th life of the nine I've been assigned in a lifetime. I've been told I've narrowly avoided having a stroke.
It seems obvious that the link between hypertension and anger results in the body shutting down as an immune response. The same could be said of that with the emotion of anger and the numerous ways it associates our emotional selves to reach out for poisons to mask that anger-slash-fear association.
I've written much about the love-trust relationship with the world and it’s my greatest challenge yet having largely been subjected to the worst of the worst from those who had been charged with being the best of the best.
