Well let’s get the easy stuff out of the way and we will start with the good things:
- My 16 year old Sophomore made JV Boys Volleyball team!
- My Social Security finally went through all the red tape at my judiciary hearing which only required me to say my name, correct my own lawyer on the year the surgery was done🙄, and even the government’s occupational therapist had no comeback to my limitations (but hey at least I can walk – even if my pain level is so severe I’m on an opioid patch plus an additional opioid for anytime pain levels increase including any precipitation, drastic temperatures changes, or anxiety levels)
- I bought myself a rather decent Casio Previa 88 keyboard so I can attempt to start playing with my SCI issues. Bad news is it’s still in the box waiting for my stand with pedals to arrive. Hopefully that will give me a renewed hobby and I can get back to basics of scales…and maybe finally mastering bass clef without having to annotate the note in pencil 😂
Things that sucked are WAY worse than everMy Father who anyone knows me was my rock after my cousin, an only child like myself but always the big brother/little sister relationship without any fighting due to weekend visits passed away at age 20 when I was only 12. My father who has been the center of my world was diagnosed with idiopathic pulmonary fibrosis in 2016 and which carries an average life span of 3-5 years, is now on constant oxygen and it’s incredibly hard to being forced to look at him through the screen where he is now bed ridden (Thank god they only live a mile away) or the 5 minute FaceTimes I get daily unless he’s had therapy or it’s a shower day and even with the O2 cranked up he’s still breathless during that tiring ordeal for him.
Coronavirus Stay At Home extended another 30 days – while I completely agree with the governor on this issue, It’s taking away the time I have left with my Dad, whether it be a year, months or weeks. The last time I was able to see my dad in the flesh and actually hug him was back in mid February for a 4-hour home visit before they locked the rehab center down and he was transferred home 2 weeks later.
After receiving my 8th or 9th MRI post surgery in January, my neurosurgeon who is known to very “conservative” wants to wait until one level above my 3 level fusion is compressed and not just the spinal cord sac not to mention the huge bone spurs from my previous surgery growing into the sac isn’t an issue unless it compresses my cord and then this time he will take out the bony V structure in the back to give the cord more room. I’m in more and more pain every year that passes and he’s waiting for my neck to spring a “Come On In -We’re Open” sign to spontaneously illuminate from my neck…ugh… brain surgeons sometimes lack common sense. Luckily my primary doctor referred me to her spinal surgeon (I typically like to keep all my doctors in the same network so all my medical records are within their grasp) but low and behold my fathers illness with IPF has gone into active mode and between spending time with him and another 12 week in a brace – no thank you…I’ll wait.
Between my disability which has caused depression and anxiety which has been heightened by my fathers condition – the Valium I’ve been put off and on the downside to benzodiazepines is you build up a tolerance which can lead to abuse of the medication and death, I quickly spotted the tolerance and contacted my doctor for a new medication that can be built up that’s not in the Xanax/Valium family for Dad’s journey. Bonus news is it lets me sleep too!! Which is always a constant problem with chronic pain.
My GI doctor postponed my scopes – Yay! Did I forget to tell you my pain tolerance/threshold is so high I didn’t even know I had a ruptured ulcer that landed me a 6 night stay in the hospital. Only sign I had was a weird twinge. Bad news is last years scope after the ruptured it was in a good seal but had a larger ulcer to worry about so no more anti inflammatories except my neck injections, and the occasional Toradol shot for my neck and the once/twice a year a tapered Prednisone dose for 15 days.
My uncle and godfather, who happens to be my late cousins father passed away after suffering a seizure which caused his car to drive into a lifted truck. He had to extricated by being cut out of the roof. Be endured a traumatic brain injury, over 36 surgeries, and mercifully died roughly 3 months after the accident at 98 pounds on December 1st. Because of the uncanny close relationship of my father and brother including having their own language until my father shifted speaking Engljzb at the age of 4, having mini strokes the same day, almost 2000 miles apart, amongst other oddities, we were afraid of Dad following his Big Brother as Dad drastically lost an extreme amount weight following the sad but blessed news that finally his brother was finally reunited with his son after 29 long years without him.
Unfortunately the sole survivor of this small family, my aunt – her cancer had returned after just 5 years which I wholeheartedly believe was due to the stress which my uncles accident brought upon her loving soul now finds herself fighting a huge uphill battle which I fear she will not make this time around. Mercifully her neighbors bave been there bringing her meals, giving her rides whether to the grocery store, the hospital and even set her up with an iPhons, amongst other countless selfless acts are there to be physically with her when I can not to which there is no answer given the timing of the Coronavirus that has now plagued the world even at its most basic levels. For their selflessness I feel extremely blessed for Jan and Allen and that there are still selfless and loving people in this world.
As I approach my 5 year anniversary of my surgery – May 11, a day that will be etched into my soul amongst countless others both miraculous and gut wrenching, at a time at which my greatest challenges down to my soul await me,
I still remind myself that while I may live amongst the most severe pain I bave ever felt and it has taken years to slowly accept the words uttered to me 4 1/2 years ago that any pain going forward would be permanent my soul can rest I still pushed on another 5 months working even with accommodations still couldn’t push any further without making anything worse and I had a 12 year old son I had to live for – no matter the cost that ultimately he would pay through because of my pride of working up the long, tedious “ladder” up to my dream job, just for it to literally be taken away with a diagnosis that took 6 YEARS to finally get – 2 WEEKS after I finally achieved my goal.
The long and short of that literally word vomit is MY PRIDE is not worth the cost of my child that I literally toed the line of death to keep him safely into my womb long enough until the medical world where modern technology would bring him and keep him alive for the first scariest 4 years of his life.
Now almost 17, you would never guess that he is and has been for the last 17 years there is NO PRICE I world not pay for him – even a lifetime of physical severe pay.
He is the reason I continue to push on every single pain filled day.