2020 – 5 Year Post Follow-Up

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.

2019…Another Year In Pain

Year 4 of constant pain.

The brutal Chicago winter of 18/19 weather hasn’t helped with posting but since my last post a lot has transpired.

Another MRI showed that C3/C4 disc has split open but hasn’t herniated “enough” to warrant another fusion.

I suffered a severe setback in June 2018 my when I unexpectedly had a perforated duodenal ulcer and was hospitalized for 6 days – and immediately was taken off the Meloxicam which was my only anti-inflammatory medication, even though doctors doubted that it would even cause that. An Upper Endoscopy showed a peptic ulcer 2 inches in length, so even though the duodenal ulcer sealed the perforation itself without the need for surgery, I still had another ulcer that was large to deal with. Oddly enough I’ve never had GI issues until my journey with Myelopathy started. Without the daily dose of Meloxicam, the pain just got worse.

The winter came and it was nearly constant visits for Toradol injections, which got me through the 8-10 pain scale days were just too much. It even was so bad I could rarely make my counseling appointments.

Spring hasn’t been so nice especially the ever constant rain which has been the cherry on top of a brutal couple of seasons. I’m hopeful that Summer will be kinder and hopefully not a scorcher.

Fingers crossed!!

Another Month, Another Setback

So, after recovering from a perforated ulcer in the hospital for the longest 6 days of my life, not even a month later I find my balance suddenly ripped out from under me where my body from the waist up feels like it’s being pulled to the floor like a magnet. Going 10 feet to the bathroom I end up hitting my head twice into the glass shower door and the drywall in front of the toilet.

Needless to say I was diagnosed with a concussion and had another MRI on my brain (for now). Which was normal and the congenital defect on a vein in my left frontal lobe is stable from previous MRIs – all good news.

Except the recovery time from this concussion has been hell. A month in and any phone time has been very limited, balance has been circus show in itself, I don’t like driving far, I’ve been sleeping 18-22 hours a day and guzzling water like it’s going out of style.

Now I’m facing another Neurologist visit, the scoping of my stomach and the beginning of my lower intestines (where my ulcer is located), oh and two teenagers starting high school.

So sorry folks for the long delay as it’s been very hard to look at electronics and I’ve been auditioning for Disney’s live version of Sleeping Middle Age Beauty. But on the bright side I’ve finally got on Twitter in hopes to spread Myelopathy awareness. Find me @myelopathystory

That’s all for now!

Walking On Broken Glass

So, after a failed ablation surgery in April in an attempt to better manage my pain, it was very deflating. If that wasn’t bad enough, I had started feeling pain right below my rib cage for the better part of a week. By Wednesday, when Percocet and Soma didn’t knock me out I knew it was not to be ignored. I hate being right….

Wednesday afternoon I go to the ER with my Dad. One CT scan later changed the ball game. Ruptured Stomach Ulcer. I was being admitted and would most likely face surgery in the morning. So I spent Wednesday night with nothing but ice chips, an IV that would occasionally have antibiotics attached every 6 hours and morphine injections every 2.

Thursday morning the surgeon comes in and says the rupture is small and because it’s in an unusual place he’s hoping it will seal itself eliminating the need for surgery. He has X-rays ordered to see if there are air bubbles in my abdominal cavity which would indicate perforation is still oozing stomach acid into my abdominal cavity and onto the surfaces of other organs. X-rays show all is well so far. Ok, that’s good news, but no easy path. Another 24 hours of the constant change of IV bags and various medications with nothing but ice chips. And seeing that at this point my last snack was noon on Wednesday I was starving.

Friday – repeat this process with finally being blessed with a clear liquid diet – and as picky as I am meant that came down to Italian Ice, Jello, water and iced tea.

Saturday repeat. Except now upgraded to a full liquid diet which included the blandest oatmeal – blended down to baby food consistency – which was plain gross even to taste. Late Saturday night is met with the clear diet finally hitting the exit with a splash which sends the nurses into warning frenzy which will require further testing.

So here we are. Food has been upgraded to a regular menu and I enjoyed my first bagel this morning. Followed by some sleep that is very hard to get in any hospital. I walk the once bustling hallways to room after room empty. It’s Day 5 and I’ve had 3 different neighbors in the room next to me in 5 days and yet I’m still here…stuck – with no mention of a discharge date, and even when it does come, it will surely be followed by more daily prescriptions to add to my daily ritual. It’s depressing when even the dogs aren’t looking for you anymore.

So in a nutshell, my health continues to walk on broken glass.

Medical Problem Child

So the last couple of weeks my sleep has been completely out of whack and the pain medication has lost most of its effectiveness. The spascity in my legs and arms has gotten worse and I’ve had to go back on blood pressure medication as my resting heart rate and blood pressure skyrocketed back up when I attempted to get off one of the 16 prescriptions I have.

My only thought since I’m no longer having full blown panic attacks which caused tachycardia which is the original reason I was placed on that medication is that it’s my body’s physical response to the constant severe pain that makes some days impossible to get out of bed except to use the bathroom. But I will tell you I expected to have acquired minor cardiovascular issues with Myelopathy. Oh the fun surprises it brings.

So it’s definitely time to go back to the doctor and get medications changed around as the unfortunate part of a lot of my medications is your body gets used to the drug and dosage and needs regular tweaking whether upping the dosage or changing the medication out completely for another. I look at my daily pill box and it’s quite sad that I have to take 19 pills a day – and that doesn’t count the pain medication or muscle relaxers that are needed on a daily basis.

But on a positive note I got out to attend a baby shower and see my friends that I haven’t seen since a wedding like 16 months ago – yeah that’s how much I get out. But the couple of hours seeing everyone and socializing was worth the excruciating pain that came on just before we left. And it was fun to put some makeup on and look quasi normal on the outside aside from my trusty cane, even if my insides are falling apart.

Hopefully I will get in to my doctor today and get the changes I need made and maybe another round of physical therapy. Fingers crossed. In the meantime I’ll have my trusty 80 lb furry companion who is the biggest cuddlebug and gives me a sense of peace and calm in my world of daily medical chaos.

Another Day In Paradise

After a solid week and half of my traps and my neck muscles feeling so tight I finally got to see my spinal pain intervention doctor today for some badly needed injections and to have a nice little chat about his little stunt that I did not appreciate.

While I’m very assertive with my medical team (as you have to be your own advocate no matter how great your medical team is)! We came up with another idea that may avoid going back under for facet injections that may or may not work. So first doctor visit was a pleasant one and I walked out of the office finally looking forward to a good nap as I haven’t slept even remotely decently for just about 2 weeks. So I donned my pizza and hotdog flannel PJs and finally got a decent nap with the help from my normal pain meds and a fresh Butrans patch.

So I woke up, changed back into my wrinkled T-shirt and jeans from this morning (Starting a new fashion trend). Got in the truck and looked at my nearly empty gas tank and decided it would be best to fill it up on my way home before the massive snow storm starts. So I drove the mile and arrived at the hospitals physicians building were people are parking vultures and I even saw one lady that was ignorant or had a blatant disregard for disabled peoples need for larger spaces and parked in the yellow stripes – which just irritated me.

So I finally made it to the neurologist office 15 minutes early and sat in the same old chairs that are the worst ever waiting for my neurologists one woman show, Stephanie who never ceases to amaze me with her ability to be the nurse, receptionist, and the direct the flood of pharmaceutical reps with a sass that reminded me a bit of me. So usually the neurologist is the fastest doctor visit ever. Today was quite different. My appointment was for 1:30 and didn’t get called back until 2:15. Which I didn’t mind as I got my French lesson done for the day (On a 31 day streak and 57% fluency… (Je suis mange pour connaissance!) and eaves dropped on high volume cell phone conversations, when I finally got called back. Stephanie mentioned he has a med student with him and she was just going to grab him as I tend to be a magnet for med students being the very atypical Myelopathy case and I was appreciative of her running interference for the med students so they’d miss this unicorn for once. (Don’t worry fellas… I’m back on a regular basis).

Finally I got my walking papers with an order for a Doppler exam on my calves which the tone from the cord misfires makes the muscles feel like they are going to snap by walking too much, just to rule out arterial blockages. I can’t knock the tests, because between my physical therapist having a gut feeling and my doctor listening to that gut feeling, Miss Daisy, my sassy physical therapy assistant back in 2015 saved my life.

So next week is yet again full of more medical and doctor appointments and more fun. But for now, I’ll hunker down during this snow monster that will no doubt crank the pain notch up a few.

I’m living in a medical soap opera!

So… last month my spinal pain intervention doctor throws me into the MRI which at this point I want a buy 9 get the 10th free program instituted. Says ok go see the Neurosurgeon (again) and have him clear you for facet injections and he would just set the appointment up in their Surgical Center after he got the note to save me an office visit. Ok sounds like a plan because at this point I’m tired of the back of my neck feeling like I got hit with a baseball bat. Sounds great right?

So one look at the MRI and I’ll admit it looked a bit off but nothing alarming like any new herniations or compressions. But it did look to me like the 2 of the spacers has moved toward the spinal canal. And while I’m trying to wrap my head around this because those spacers were filled with bone material to grow bone where the removed discs were. Then I saw the abnormal signal all throughout the fusion length from C4-C7 and not just where the bulk of the damage is at C6 which has never moved or resolved (hence permanent damage) so I shrug that one off as a shadow.

I go into the neurosurgeon with the concerns of what looks like the spacers have moved although my logical side can’t seem to process it. Well turns out the spacers haven’t moved it’s bone spurs growing toward the cord off the bones they grew to stabilize my neck because insurance doesn’t cover artificial discs. (Awesome! Santa had a late gift for me and I wish it was coal) and that shadow really isn’t a shadow it’s an abnormal cord signal throughout the entire length of the fusion. So he suggests the possibility of an laminectomy to give the cord some more room even though it’s not compressed but it’s definitely in the watch category. So that was an easy declination of that surgery with the mindset of let’s not do anything that doesn’t have to be done, especially since it would mean another 4 hour surgery and an even harder recovery – yeah not jumping on that bandwagon. Knowing full well it will be nothing short of a miracle if he never has to go back in there for adjacent discs that have to bare the load and in time will likely fail. So he clears me for facet injections. Super! So I wait for the nurse to call me with the scheduling.

So my phone rings…. while I’m in the waiting room just about to go into my counseling session. It’s not my doctors normal nurse or any nurse I knew at that facility telling me to call this doctor for spinal abalation. HOLD THE PHONE – I did not agree to burn my nerves off without trying to numb them first to make sure they are the problem. CART MEET HORSE. The nurse is essentially useless as far as why he is sending me over to another doctor with a phone number that I googled and found was not associated with Rush – no web site no ratings no nothing. Sure let me go ahead and let some person I can not research put me under, jabbed needles into my neck and numb the joints. Sure, and while I’m at it can I make a request for the doctor to be blind – because that would complete the all inclusive experience.

So, because I was already in the waiting room I didn’t have time to argue with her and I was scheduled to see my PCP in the next coming days so I tell her the story and she is bewildered and sees the note from my neurosurgeon who cleared me for facet injections. This is where I strongly recommend having all your doctors affliction to be the same hospital as my spinal pain intervention specialist is well known to my PCP, Neurologist and Neurosurgeon. So she suggested calling back and finding out what the hell is going on.

Well I have a better plan. He didn’t inject my trapezoid muscles so they are flaring and screaming so I will be having a very long, stern discussion with my specialist as I find that conduct very unprofessional and I want answers from the horses mouth and I don’t have the tolerance of nurses who are unfamiliar with my case to not have answers I need especially when they tell me to go see Dr. Jekyll and get my nerves blown away when I was adamant with the physician to not put the cart before the horse.

So other than being in agony from pain and sometimes bedridden for days I’m counting my marbles because I’m convinced I’m missing more than a few.

Then for the cherry on top… my Tempur Pedic cervical pillow decided after 3 years my head was too heavy and it had memorized my neck alright – except it would no longer support it. Given it supported my neck for 3 years at the cost of 100 bucks… I can’t really complain but damn the timing sucks.

But hey, I get to go see my Neurologist and my spinal pain intervention doctors both on Wednesday – Double the fun! Now only if I could dull the pain enough to fall asleep and it actually be rejuvenating. Fingers crossed.

New Year – New MRI

First a little back story…..

So back in May I started to notice an increase in my pain on a regular basis and other subtle changes that raised a flag for me. So my PCP ordered an MRI – which the insurance company denied saying it didn’t meet the criteria. So my neurologist had better luck and finally in August I had the MRI. C3/C4 looked herniated but there were other degenerative changes in my ACDF in C4-C7. So because there wasn’t any new compression, while my doctors urged me to see my Neurosurgeon, I didn’t want to waste his time.

So come October, my pain levels were on the high side of the scale and dosages of my medications were increased to give me some relief. Again, I was asked by my doctors to visit the neurosurgeon and this time I complied with their request, even though I told them giving him an MRI that was 3 months old before the pain doubled down and new and worrisome symptoms started to appear. After that visit he suggested some facet injections in my neck to help with the pain and would send a note over to my spinal pain intervention doctor.

So I showed up for my appointment with my spinal pain specialist who after examining me and hearing my list of new and worsening symptoms immediately scheduled me for an MRI 2 hours later. My medical team is very cautious with me because the Myelopathy left permanent damage in the form of a Myelomalacia at C6, which already left me compromised so it makes it difficult to determine what’s old vs what’s new. Based on whatever results came back if there was cord compression I would go back to my neurosurgeon as I would require another surgery or if there wasn’t any compression he would schedule me for an outpatient surgery for the facet injections at their facility.

So I had my 5th or 6th MRI since my Myelopathy was discovered and since I had to pickup my son to drop him off with his father, I carried that CD in my purse itching to get home to see what’s changed.

Needless to say, I did not like what I saw. It actually left perplexed. It almost looked like areas of my fusion where the discs were replaced with spacers filled with bone material to grow bits of bone to connect the levels were starting to invade the spinal cord sac. And if that wasn’t enough to perplex me it looked like I was having additional cord signal abnormalities which is a huge red flag, but I’m crossing my fingers it’s a fluke from the scan.

So either way this goes a surgery will follow for the new year. Either a small outpatient surgery to inject a nerve block into my facet joints in the back of my neck to provide pain relief up to 3 months or it’s back off to the neurosurgeon and the land of Oz where I don’t dare speculate what the grand wizard will want to do.

Until then….

Myelopathy – A Parody of Charlie & The Chocolate Factory

Ronald Dahl had it right. His timeless story of Charlie & The Chocolate Factory really could parody any life situation. For example:

I imagine myself as the humble hardworking Charlie who thought that golden ticket was a chance to get back to better world but gets stuck inside the madhouse that belongs to Myelopathy- Willy Wonka.

Where Augustus Gloop could represent the spinal cord compression as he is squeezed through the tube.

Where Veruca Salt’s constant stomping around is a myoclonic jerk. Because if the jerk is coming – it’s arriving now just on Veruca’s whim.

Where Violet Beaugard’s gum chewing equate to my every trigger point that throbs over and over again no matter how hard long it’s been there, it may get tucked away behind her ear for a little bit each day but don’t worry – those throbbing aches and pains of trigger points shall return.

Where Mike TVs obsession to TV and is oblivious to anything else is that thought in my head that is always closing watching what else is going to pop up.

The chocolate river that is ever lasting flow of pain where even a fizzy lifting drink can’t take the pain away for too long.

The mastermind himself, Willy Wonka who is always on the go, trapped inside his madhouse, that is the accompanying fatigue that goes hand in hand with his chocolate river.

Denial

Well I got my first denial letter today from social security and for the first time I think I would wish this hell on my caseworker even just for a day or two so she would get it. My daily life is hard to truly imagine or empathize with unless you see it. The part that really aggravated me was the part in the letter that I can do lightweight work like answer a phone.

Lady – the only calls I will take 100% of the time is from my child who lives 75 minutes away from me and that’s only when he calls me and I’m awake. Even my immediate family will tell you calling me is a crap shoot – and it’s not that I want to be anti social, but when you are in severe pain and so physically weak – you aren’t even in the same country of the mood to shoot the breeze.

Yeah except half the time I forget what I’m going to say because I got distracted by pain or fatigue that is never quenched by a nap because a full nights sleep is nothing but a distant memory – maybe extreme muscle weakness is a better term for it.

Believe me when I tell you that nobody in many others like me would love nothing better to erase this part of our lives and go back to work, raise our children, enjoy hobbies, take vacations and have social lives.

Anyone who knew me prior to this would tell you I was a very active person. I loved my accidental career, I loved spending time with my family and enjoyed many hobbies.

When it’s to the point that I can only sew 3 scraps of fabric on a paper pieced 4” quilt block which takes 15 minutes – and I can’t do it without sweat rolling down my back – that’s a problem. When I can no longer fold a basket of clothes, cook even a simple meal, or even muster enough strength to stand in the shower – that’s a problem.

That’s the problem with the government – the people who genuinely need assistance need to fight tooth and nail for it – all the while just making their condition worse and then there are those people who abuse the system which is just despicable.

I swear by the time this whole debacle is over it will be a miracle if I don’t end up on the OR table again or in a walker or a wheelchair before it’s over.