#AloneTogether
#AloneTogether
I've had a lot of time to think recently. Alone. But I'm hoping I can share. Insomnia combined with unnatural sleep inertia is a particularly bad combination - latest side effects of medication trials. I'm on my second dosage change on the third prescription in a series of attempts to find medicine that helps. Even being medicinally resistant (which isn't helping find a solution) doesn't seem to be helping with withdrawals when necessary change-ups are needed.
After a period of about eight months which included constant visits to various specialists - oncologist, rheumatologist, gastroenterologist, and suspected diagnosis - cancer, not cancer, autoimmune, not autoimmune, sclerosing mesenteritis, I can't even say that last one correctly twice in a row... the diagnosis is Fibromyalgia.
Fibromyalgia is a relatively common condition affecting about 2% of the adult population in the US (4 million US adults - CDC1). It's just really hard to diagnose and the cause is yet unknown. There is also no cure.
Which is all frustrating. I have ZERO of the factors that put an individual at higher risk (WEBMD1):
- You're a woman. - not last I checked
- You have another painful disease, such as arthritis, or an infection. - nope
- You have a mood disorder, like anxiety or depression. - nope
- You were physically or emotionally abused or have PTSD. - never
- You rarely exercise. - quite the oposite
- Other family members have it. - nope
Apparently this malady is so much more associated with the female gender (2-8 times as likely depending on source) that all the materials I've ever been given on it have large sections devoted to menstrual cramps, childbirth, etc etc.
Regardless, the list of symptoms fit and we've ruled out everything else (the list of negative results is EXTENSIVE). Sadly, fibromyalgia is a syndrome, not a disease. It's a description for a consistent set of symptoms instead of an explanatory diagnosis (PAIN1):
YOU: I have unexplained chronic pain.
DOCTOR: You may have fibromyalgia.
YOU: That’s literally what I just said.
The extent of the syndrome varies wildly between patients too. I won't speak for them here. But, here's my scorecard (CDC1):
- Pain and stiffness all over the body. - check
- Fatigue and tiredness. - check
- Depression and anxiety. - not so much
- Sleep problems. - check, check
- Problems with thinking, memory, and concentration. - dammit, check
- Headaches, including migraines. - check
- Tingling or numbness in hands and feet. - check
- Pain in the face or jaw, including disorders of the jaw know as temporomandibular joint syndrome (also known as TMJ). - not so much
- Digestive problems, such as abdominal pain, bloating, constipation, and even irritable bowel syndrome (also known as IBS). - uh, not sure if that's new though...
In any case, my life has had some... changes. I'm incredibly grateful to Baker and his help at the gym prior to becoming sick. I've realized that may have been my chance to strengthen up before I wouldn't ever be able to again. I don't work out now, I don't do Judo - I don't know that I can ever return to either. Yeah, I know it's one of the "recommended treatments," but so is this:
- "Treat sleep like it’s precious. Learn everything you can about insomnia and sleep problems, learn and practice the best possible sleep hygiene, and protect your sleeping conditions like it’s life or death." (PAIN1)
I have six kids. End argument.
But more than that, I worry about work. While it hasn't been directly added to many of the typical medical web sites, the correlation between work/career and fibromyalgia isn't good. Pulling from just a single study briefly (WORK1):
- People with fibromyalgia (FM) are challenged by symptoms such as chronic pain, fatigue, sleep disturbance and emotional distress, impaired physical capacity and report consequences on their activities of daily life and difficulties in fulfilling their life roles including impaired ability to work.
- ...recent studies of work disability in North America have found disability rates of 30% in Canadian patients with FM, and 35% in patients with FM in the USA.
- ...employment loss was a rapid process for many women within the first year after being diagnosed with FM.
- ...Australians with FM found that the rate of full-time workers decreased from 54% at time of diagnosis to 16% at the time of the survey.
It goes on. That's only tapping into the first paragraph of literature review. Apparently 'Merica likes to sugarcoat it (WEBMD):
- Many people with fibromyalgia continue to work full or part time. But the chronic pain and fatigue associated with fibromyalgia often make working very difficult.
Many - not all, not most, not even the majority.
My work is luckily not physically demanding. It is however very mentally demanding and this "Fibrofog" is no joke. I can quite literally lose my orientation walking down a hallway (in my OWN HOME) and have to take a moment to reorient. I fear I'm tipping my hand too much with this next one, but my ability to follow complex or abstract concepts (common at work) has definitely been impacted. And that's a very real problem. After working through all this for a few months, I had to take a hard look at my life goals and after much discussion with my wife, changes were made.
I struck a phd and a black belt off my bucket list. We immediately enrolled Ashley in school to finish up a degree in accounting (one of her passions). I'm keeping write a book - it just might not be as coherent as if I had started it a couple years ago.
And letting go of that was way harder that writing here to share. I was set to be a lope - Grand Canyon University. I was even working through plans to be able to afford it. I had also found a Judo instructor whose approach I respected. That's A LOT coming from me. I have had seemingly unrealistic expectations since leaving the Gardena Judo Club under Wada Sensai decades ago. I've walked into lots of dojos and been disappointed. Now I'm disappointed for an entirely different reason.
I hope this doesn't come across as giving up. I've had a healthy dose of reality hit me square in the face and I can either keep breaking what's left of my body trying to deny what's happened to me OR I can pick my battles with limited resources (at least that's what I'm telling myself). Stacking more education/credentials on myself who is now a high risk case makes less sense than getting credentials for my wife. Pushing my diminishing physical limitations for a competitive sport makes less sense than expending energy in more moderation for simple chores around the house, carrying my youngest kids around at night when they need comfort, and hopefully making a few things on which to imbue new memories.
I did start studying for AWS certification. I test well and it's a need I know the university has - more skill in could architecture. The thing was, this should have been a week of study, a couple practice tests and boom, done. It took me 3.5 weeks of focused study, and SEVEN practice tests to finally get a couple passing scores. A friend joked, welcome to being normal, but I have no desire to be normal. (I did pass the official exam).
It is my hope that those who know me know of my faith. Perhaps my particular system of believe doesn't coincide with commonly accepted culture, but I don't believe culture to be religion. Suffice it to say, for now, in this context, I believe strongly in the power of prayer and priesthood power which has been restored to the earth, never to be taken from it again. Concerning this malady I received two blessings at different stages of limited understanding of what was happening to me:
- That I would fully recover and be stronger than before.
- That I would be brought to the end of my ability to endure before I would recover.
Now, my heart sunk quite a bit on receiving the second blessing. The end of my endurance has never been reached and I've gone through some shit (there is where my literary prowess shows I'm lacking). I've pushed through perceived mental and physical limits more times than I can count to the point where I genuinely believed they don't really exist, your own fear and mental fortitude are your only limits.
I tore soft tissue in my left wrist and shoulder in the military and rather than be recycled, I learned to do pushups on one hand (fist really, as the added height means you don't have to drop as far down - it's all in the field manual) 32-reps barely passing for my age category, but it's go / no-go, so I'll take it. I buried my firstborn son. I've gone through a divorce with someone I still loved. I've been arrested and brought my family to financial strain for years defending myself against a crime I didn't commit; Treated as a high risk threat in a prison while handcuffed for honestly answering questions concerning training with firearms and explosives. I've learned to overcome depression to the brink of suicide and held the hand of another coughing up the charcoal used to undo her attempt. I know at least something concerning what I am capable of enduring.
It's when the blessings are taken together and the full eternal perspective taken in that it become a bit clearer. The end of my ability to endure, really is the end of my endurance.
And this troubles me. Because previously I knew two great personal truths:
- The second great commandment, "love thy neighbor as thyself" was my calling.
- I had been gifted with a uncanny ability to learn anything I set my mind to in order to achieve this calling.
Mine is the role of the helper, to empower others and magnify their ability to contribute. This is the role I assume at work, with by friends, in every form of strategy I play at. I love it - were it my choice, it is my epitaph, "empowered all who crossed his path." I had learned the Great Teacher had chosen the word neighbor deliberately. He could have said my sheep, my Father's children, all people, etc. etc. But neighbor has a geographic implication, those that cross your path (He literally used this exact example when the question, "Who is my neighbor?" was proffered). Our station is this life is not by chance, neither are the opportunities we have to serve. There is a design at work mating our capability to opportunity.
How can I continue to be the helper when I need help? How can I continue in my obligated roles as provider and protector or to my brother when I'm the one that needs help?
I hate complaining. My grandfather and namesake never in my or my father's lifetime complained. His hammer resides in my father's tool chest, unique head design, square handle (because that's what his hands could hold after being scarred in an early cinema fire) stained dark with his blood. Yet he persisted and contributed his labor to building a Kingdom. All without complaint. And I'm screwing up that legacy.
But I hurt. I can't even call it pain cause it's obvious something between where the signal originates and how my brain interprets it is off. I just interpret it all as pain. Typical remedies can't seem to touch it. More potent remedies don't work like they should (medicinally resilient) and we haven't yet found a combination that doesn't result in either my inability to think clearly enough to pass as a human being, stay awake long enough to put in a full day's work, or hurt enough that all I want to do is remain still. Pain used to be a friend, an ally I could count on to tell me where limits were, how far I could push them, how badly I'd been wounded, that I was still alive. Now it just crashes down on me, unrelenting to smother all that remains of a seemingly failing mind. Certainly this can't be the case for all FM cases, or have I been a completely calloused jackass and owe a whole section of the human race an apology?
My apologies if I draw too close a parallel to One I am not worthy of that comparison, but I already, under the most serious of obligations, take upon me his name, so I pray that I have the faith that he could heal me, that I have the greater faith not to be healed - to drink from this bitter, however comparatively meager cup. Either, if it accomplishes His purposes and in accordance with His will.
That would be faith (BEDNAR1).
And as it seems only appropriate at this point.
In the name of my Lord and Master, Jesus Christ, Amen.
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