Myelomalacia

So after my wonderful trip to the Emerald City, I was finally granted the MRI from the Insurance companies.

For the first time they actually had to redo a set of images as the myoclonus even in its tamest tends to give me trembles. While I wasn’t expecting the worst, I knew it was the best. Sure enough C3/C4 finally went from bulge a year ago to blown. Something I expected… just not this soon. What was worse is the damage got its label as a myelomalacia at C6 – and by all accounts it not good – it’s essentially a piece of cord that’s essentially short circuiting constantly on hyper drive.

This explains my extreme fatigue and pain I wouldn’t wish on my worst enemy (not that I’d have one anyways, just not my cup of tea), the myoclonus jerks and trembling hands that reminds me of my ex husbands late great aunts bout with Parkinson’s, my bladder issues, all of my clumsiness and inability to walk unassisted by a cane to keep the stability and prevent as many falls as I can.

Although the wizard remains optimistic as it hasn’t spread, story is not progressive as of yet, and hopefully it will remain that way, as it’s kept in the back of my head that myelomalcias can ascend upwards, so in essence once it hits C3/C4 it will paralyze my diaphragm and I will be unable to breathe on my own. While no new compressions, c3/c4 herniation is touching the outside sac that the spinal cord resides in, as well in part of my fusion.

So essentially squeaking by the neurosurgeons table for now. Both the neurologist and the spinal pain management doctor recommended to go see the neurosurgeon, which I’m really not inclined to do until we get closer to that, just yet anyway. If there isn’t compression he won’t want to operate and I’m not going to waste that talented mans time who is well known in the neurosurgeon community here, in Chicagoland.

But it would be wrong to admit that the fact C3/C4 has finally blown and is still quite possible to compress the spinal cord is not exactly giving me the warm fuzzy feeling. I keep thinking stable is good. I can live with a stable myelomalcia, and I can live with additional fusions if and when the time comes.

Until that day I will continue to go to my various physical therapy, my counseling to keep my head on straight, along with my meditation that I’ve been slacking on, sticking to a strict medication schedule (Currently managing 11 prescriptions as of today) and while I’m sure I will fall short of all my New Years goals due to set back after set back, I’m still hoping to finish a quilt, a craft that I had just started to getting into before the house landed in Oz.

That is my hope. And hope is all I have that can’t be taken away, even though its simply not possible to have some days that it feels horribly hopeless being trapped in a body that you no longer have full control of, but I will continue to wrestle those days as they come along.

I found this on YouTube and if you’re interested on learning more, take a peek at this quick video.

Feel My Pain – Myelomalacia

The Unbroken Continuity


There is absolutely unbroken continuity. Why should I be out of mind because I am out of sight? I am waiting for you, for an interval, somewhere very near, just around the corner.  -Unknown


For those of you who actually know me, you probably know that I lost my cousin when I was 12. He was barely 20 years old. 

 He was the older brother I always wanted who looked after me, protected me and even kept me around even in his teenage years with his friends in tow.  I was the baby sister that he always wanted, even wanting to follow my parents to the hospital as my mothers water broke in their kitchen, who annoyed him on occasion – especially the relentlessly cheering for him during his countless baseball games, the baby sister whose older brother was deployed overseas during Desert Storm that had a full blown panic attack at 11 years old in Science class while the teacher had the news on the radio reporting on the war while the air raid sirens wailed through the radio waves.   While we were the only children from two brothers – we were bonded from the beginning.

It has been 25 years that I have lived on this earth without him in the physical realm.  I've lived without him physically twice as long as I was able to physically touch him.   It still never ceases to amaze me how much I can miss someone who was only in my life for such a short time, but who in life and in death had such a profound effect on me and my life.  I look at my son, who has a cousin of his own and their relationship mimics my own relationship with my late "older brother".

There isn't a single day that doesn't pass that I don't think about him – whether intentional or something catches my eye that reminds me of him or a song comes on the radio – it's just become a part of my existence.  He even still manages to piss me off – not because he died, but because like many people who experience what I will call an unnatural or untimely loss, I feel he should still be here to help me to tend to our aging parents or to give me older brother advice – even though I know he's still with me every step of the way.  The moments I look forward to the most is the very rare occasion when I'm with him in my dreams – it's an experience that to me is the next best thing to having him physically here.   I think we always have that one person we lose that really stays with us.  He's my person.

I've experienced my fair share of death, I've gone to countless funerals, I've carried caskets and sung their praises in heartfelt and honest eulogies, but one thing that has always bothered me is when people say time heals the wound that is left when our loved ones leave us.  I've had plenty of loss, and I couldn't disagree more with that statement. 

I think that we live in a death denying culture where we just don't talk about it – we don't want to think about it.  We avoid it.  We keep putting off our wills and talking about final arrangements, aside from telling our nearest and dearest  I want to be buried, cremated, etc.  In our culture most of go about our daily lives assuming we will be here tomorrow.  We tend to think we will die when we are old and gray.  

Then when the unimaginable happens – children die before their parents, people take their own lives out of such a deep profound desperation that they only see one way out of their peril, freak accidents happen, yet our culture takes these untimely deaths as a blow to our hearts and souls in such a way that people think it shouldn't have happened the way it did.  Guess what… tomorrow is not a guarantee. Death is ugly, it is unbiased and is unpredictable.  But one thing I've learned personally – it doesn't mean it's the end.  As long as they are in your heart, they live.  Maybe you can't hug them or feel them, but they hear you when you talk to them and they comfort you when they pop into your dreams.  And when it's your turn to walk over that threshold – they will be there waiting for you and your heart will once again be whole.

Do yourself a favor – have those conversations with your loved ones, tell them how much they mean to you and hug them tight.  You never know when it could be the last.

Happy 46th Brother, I wish you were still here, but I know we will see each other again.

We’re Off To See The Wizard – The Wonderful Wizard of Oz

So unfortunately this Dorothy with her Ruby Red cane is going to see the wizard (aka the Neurologist) tomorrow as I've noticed some changes in my condition since my last bathroom spill in the bathroom which was over 2 months ago.

To be fair, Glenda (My Primary Doctor), wanted me to get another MRI since it had been 10 months since my last one. And wouldn't you know it, my insurance company aka Flying Monkeys, said I didn't qualify and Glenda told me to go see the Wizard because he would have more pull with those annoying creatures.

And I put it off as long as I didn't feel any worse and thought it was proactive but I would still approach it with the wizard at my next appointment which was only a couple more weeks away from now.

But then that green wench cackled at me and sent numbness down my right arm where I couldn't feel my fingers at all – not a good sign even in the smallest of realms. Combined that with subtle changes of existing symptoms finally made me do the right thing and follow the yellow brick road to the Emerald City where all my doctors live.

As I poured over all my latest imaging for clues, using meditation to keep the anxiety to a minimal amount – as stress mixed with what equates to a major power line with a short in it does me no favors and takes no prisoners even on good days.

Because of my case being unusual for the diagnosis because of my age, no trauma, and not a lot of symptoms that shot up red flags for
Myelopathy, it laid undiscovered most likely for years. Which unfortunately that is what myelopathy is good at – masking its identity because the symptoms can be so subtle that the root cause isn't found for a while so most myelopathy patients have permanent damage, the only question that remains is how bad.

For example, you wake up one morning like you slept on your neck the wrong way – and after it doesn't go away your doctor orders X-rays that show arthritis and bone spurs. Is your doctor going to think you have a spinal cord injury based on some
neck pain and imaging shows arthritis? Probably not. That's why it's rarely found immediately because it's so subtle, and usually by the time it rears its ugly head – guess what … you will most likely have some degree of permanent damage.

The spinal cord is an amazing tissue/organ. It starts at your brain stem and is about 1/2" and gradually gets as thinner as less and less information "signals" need to get passed the further down your body. It is a your main electric highway of signals that branch off of cord from nerves that give your body every sensation you feel – from the sand under your feet, to a bulging bladder seeking a restroom while you're doing the PP Dance, to every ache and pain you feel.

That's a lot of information for a pipe only 1/2" in diameter – and that's just in your neck. It actually splits off into branches at the end in the beginning of your lumber region. Which makes it a lot harder to get cord compression in your lower back. It's actually incredibly awesome the way we were built as humans when you look at the anatomy of the spinal cord and how it branches off to every part of your body.

Today I'm just grateful that I'm here and can still walk as my cord was essentially kinked or "buckled" in one space and flattened in 2 others – and with the amount of data flowing through this amazing conduit I choose to be thankful that I can still feel – even if it's only pain.

Mindfulness – Its Like Being in Oz with the Lollipop Guild!

So, throughout this 2 year adventure has been a roller coaster- much like everyone's life I imagine – ones own roller coaster where you are looking for the attendant to get the hell off.

Being an Apple Whore and loving all things Apple – I was shocked that a while ago that they introduced an app called "Breathe". While this normally wouldn't bother me, during this phase of roller coaster hell – my watch which recently hasn't left my wrist much to monitor my heart rate as I was recently diagnosed with tachycardia due to panic attacks and anxiety. But I swear every time I saw it remind me to breathe I wanted to chuck it into the wall and tell it to go breathe where the sun don't shine and I'm putting that nicely.

Luckily to my good fortune, my therapist introduced me to the app Calm. And I've been downloading guided meditations up the wazoo from Apple Music and it really has one size fits all type of feel – which is ok, but that's like saying we are all genetically identical – it just doesn't work that way – what may be good for the goose may not be good for the gander.

I have to say it has had a way better calming effect than a stupid reminder to breathe like that other reminder you have on your calendar at work to do your time entry on every single thing you do — so your hours are billed to whatever project or activity you were working on – most of you IT folks will totally know what I'm talking about. It's like that aggravating reminder that everything has to be in 15-30 increments and you're trying to decide where to fit in your trip to the bathroom or the user that stopped you to ask you a question – also known in the IT world as being hijacked.

Anyway, back to the story. So I actually have to say I was impressed at the customization that allows for a very soothing and relaxing experience – and If you were looking for something to help you disconnect from our electronic society
, this would be my recommendation – that would even helps my 13 year olds anxiety and maybe ADHD if he would do anything other than Pokémon on his phone…Yeah I'll choose not to pick that battle, this will require some ninja stealthiness mom style.

While I still understand that my process is a long road, I also know most of my friends are professionals with crazy hectic schedules – and if we all took 10 minutes to do the "Daily Calm" it may even make for a little bit kinder world. Anyone who knows me knows I'm not a person who recommends much other than "you go better see a doctor for that", so if that makes it have a bit more weight… check it out on your App Store! Come with me and follow the breath to the yellow brick road where the monkeys fly, the witches melt, and a kid can sign your death certificate!

The Pain of Suicide

As some of you know I, like some of you, was deeply affected by veteran suicide of my cousin who was my one and only older brother more than 25 years ago. I was barely 12 years old when I woke up to the news that my 20 year old cousin whom had recently come back from the Gulf War committed suicide by jumping from I-24 overpass.

In the following days the circumstances around his death were called into question if it was even a suicide. Nobody wanted to believe it. I didn't want to believe that he would choose to leave us. There was a special bond that he and I shared that I still can't verbalize how deeply spiritual it goes other than to call it beyond the physical realm. He was my protector, the one who looked out for me, took me to the park on the corner of his street, the one who was 16 years old with his friends over that would still include me in a game of nerf basketball. I was the little sister, the cheerleader who would cheer him on at his baseball games (much to his embarrassment at times).

But there I sat that very morning at his parents house – feeling his parents anguish, my father trying to reason with his brother not to drive almost 1000 miles to Chattanooga, to trust the authorities that they would do their job. I remember going down the hallway of their little ranch, stopping to take one last smell of his room – of him. All that was left for me was a children's bible and his beloved baseball mitt and a couple of pictures.

In that funeral home not even a week later – with nothing but a poster board of pictures of a beautiful soul and flowers. I sat on that sofa, handing his mom Kleenex after Kleenex, trying to comfort a mother and father that lost their only child, even as I was a child myself.

It took me 25 years to completely reconcile with the cause of death was a suicide. After all, who wants to believe the ugly truth. When I turned my attention to genealogy in 2008, to give my son the knowledge and truth of his roots and not just take whatever was told to me as holy scripture, I knew I'd have to do the research as every single person no matter how long they've walked this earth, had a story to tell. As I grown accustomed to state laws regarding death certificates I realized that I would not be able to obtain my cousins cause of death – to put every theory surrounding his death to rest.

So I would be left hung out to dry. I was not going to ask my aunt and uncle no matter what. Being a parent at that time gave me great perspective on the pain of losing a child – and your only at that. It wouldn't be until 2016, after I managed to escape deaths grasp a 2nd time in my life with the severity of my spinal cord injury, that I became determined to fulfill my quests for the truth – no matter what.

During my research I discovered a legal loophole in Tennessee's state law that allowed me copies of the autopsy reports, but not the death certificate. Tell me that's not laughable. What was more astonishing is with a single email to the medical examiners office, a kind man sent me a 14 page PDF of the reports within hours of the very same day. After 25 years, I was going to get my answers. They may not be the answers I wanted to hear, but they would be the facts, and nothing but the facts from a non biased medical professional. I took a deep breath, thanking my lucky stars I took medical terminology in college, and ventured into the rabbit hole.

Suicide is not pretty or any death for that matter. While I knew that he died of internal injuries and it wasn't entirely instant, I didn't know what to expect. That fatal swan dive produced many horrific injuries – any one of them could have been fatal, together it was catastrophic.

7 broken ribs produced a 6 inch laceration his inferior vena cava in the pleural cavity (the section of your body that contains your lungs, your heart, and your diaphragm) – this laceration led to filling that entire cavity effectively suffocating him, crushing his lungs and heart evidenced by blue lips and fingertip beds. Skull fractures and brain hemorrhage and a .13 alcohol level at least gave me comfort he wasn't conscious and maybe the shock was soothed by the alcohol soothed him in his final minutes.

  • Could anyone driving on I-24 that predawn morning have saved him from that stepping off that overpass? Maybe, but I doubt it.
  • Could his friends that he was drinking with that night know what his next move was? Maybe, but I doubt it even knowing the acute situation that set this into motion because let's be honest. How many times do you think your friend is upset about something do you think they are going to commit suicide?
  • Could his girlfriend that was cheating on him with his friend know this would happen? No probably not. Clearly they weren't thinking about him.
  • Could his experience during the Gulf War that would give him PTSD be avoided? No I doubt it. He wanted to serve his country and took that vow to fight our enemies both foreign and domestic.

The list could go on and on, but the point is that looking back after such an event one can ask many questions about turning points, could this person be saved? There is no answer, but I can tell you this.

Suicide affects many people, some for the rest of their lives. It doesn't go away, it doesn't get easier. I still have days where I sob for my loss, I sob that I have to live with my beloved brother in a different way, I sob that I only had 12 years and few memories to keep me the rest of my life.

There is always hope. Strife in ones life can be temporary if you seek help, but suicide is permanent….and it will take out more than just you, but everyone you ever loved.

First Year – Survived

Today marks a full year since I've had to walk away at the pinnacle of my career to focus on my health. How I survived not working is still hard to even ponder, considering I was always a high energy high spirited person. Even when I'd only had my preemie son home for a mere 3 weeks I didn't feel guilt about going back to work – after all, it was my one constant in my life that got me through all the trials life puts you through.

What's even more astonishing to me is the fragility of our bodies. Working in IT for over 15 years definitely kept me on my toes – and my brain to good use. Now I use that brain to figure out how many pages of paperwork I can fill out before I have to take a break – paperwork for sakes! Forget about cooking and cleaning and even getting the mail – any of which could spend the entirety of even a good days energy level. Logically it makes perfect sense – my spinal cord is working overtime trying to send constant signals through a damaged section to everything below the neck and the body is tired, always so very tired, and constant pain is exhausting.

In hindsight I do have to give myself credit. After surgery and 3 months post op recovery I returned to work and fought like hell thinking I could make my brain to tell my body that I had other plans, even though I knew the odds were not in in my favor, I was still going to fight for a job that I had spent 15 years earning without formal training or college. I made it there the old fashion way of moving up through the ranks by hard work.

I was going back to my dream of designing complex systems for a large company on a global scale – which meant 530-6 am conference calls or 10-11 pm conference calls so I could coordinate Asia and Europe on any number of high viability projects I had on my plate. It sometimes meant long hours and constantly on call, non of which is anything new in IT, but I excelled under pressure.

But in the end I had to make a choice – continue to keep stressing an already weak body which would no doubt would have sped then progression of the disease or swallow my pride and wave my white flag and try to give my body what it desperately needed.

The hardest decision tends to be the right one. Hopefully the next year will bring me more peace and keep my hope up that one day I will see better treatment options thar will lighten my purse that has half of pharmacy in it.

Courage

Everyday is filled with questions that center around this disease that has irrevocably changed my life forever.

  • What’s the weather forecast?  Humid, Hot, Cold, Rain. Snow – Guarnteed bad pain day.
  • Will I actually get quality sleep?
  • Who will I lash out at?  (Not that they have done something wrong, it’s my frustation with my disease)
  • Will I notice a new symptom or an increase in an already present symptom?
  • When will the next relatively good day be pain wise?
  • When is the next blow going to hit me like a shock wave?

It isn’t hard to wrap your head around being in pain constantly when it’s your reality – what is hard is trying to find the courage to continue to try and have meaningful experiences with a positive attitude.  

It’s absolutely excruciating to not be able to take my son on vacations or even a museum just because I wouldn’t be able to walk and stand for even an hour.  That doesn’t even take into account the pain that comes from transit – even little bumps in the road or ripples in the roads that most people can’t even feel.  It breaks my heart that I’ve gone from high energy used to travel every year to there are days I can’t even leave my bed.  My interactions with my son have been the biggest casualty of this disease.  He is fortunate that his father has made sure he doesn’t go without those experiences that no doubt will shape him as he transitions throughout life.

Every week I see my counselor and she has been a god sent.  By far the emotional collateral damage is exponentially worse than the physical.  The logical side of me which was my primary skill I used in my career so I’m well versed, understands everything in black and white and this entire disease’s effects into all my areas of my life is an easy to accept.  The emotional carnage is murkier than the Muddy Mississippi and emotionally I teeter between denial and anger.  She definitely has her work cut out for her.

Yes I feel robbed and cheated, but I feel that my family – especially my son who is my North Star, has been cheated the worse.  That makes me very angry.  My pregnancy was full of complications.  There was even a time during the first complication the doctors feared they may even lose me, but I didn’t care about me, I was willing to sacrifice myself for him.  I fought very hard to bring him and keep him in this world – even then he was still 8 weeks early.  He spent his first Christmas and New Years Day in NICU – certainly not what any parent wants for their child.  His first 4 years was a constant rotation of doctors and countless medications and breathing treatments.  Then the clouds lifted and life was finally perfect and peaceful at least for a while.

Now I find myself in shambles – like that rickety bridge you contemplate crossing.  There’s a part of me that doesn’t want my son to see me deteriorate into a soul trapped in a broken body that can’t be fixed.  I don’t want that to be his most prominent memories of me.  But being that this started when he was 11 – I’m forced to concede that I don’t have any choice in that matter.  I don’t want to be his burden, even if it’s out of love.

But for now, he gives me the courage to face another painful day.  

The Pain Factor

Life is full of things: love, happiness, sorrow, boredom, anger, frustration and (cue the drum roll)… pain.

Allow me to paint you a picture of my beast known as my myelopathy.  Not only do you have pain 24x7x365 days a year, but you also have extremely limited battery on which to do anything.  Imagine your remote is low on its batteries and you have to hit it several times just to get that one click you need to watch your favorite show. Couple that with pain that changes in intensity with a gust of wind and that has to be managed by several different daily medications, pain patches and opiate pain medication, trigger point injections, and weekly dry needling which is way more invasive then acupuncture, and finally with physical therapy.  

If that wasn’t enough, factor in chronic insomnia where there are days you have only 2 hours sleep on that already dying remote battery.  And as an added bonus, you have myoclonic jerks as an added bonus to having a damaged spinal cord.  Even with medication, you never know when they will strike.  

About a month ago I was carrying a Dunkin Donuts foam coffee cup filled with piping hot coffee, only to have a myoclonic jerk that popped the top of said coffee cup which then splashed said coffee onto my sweatshirt which of course I couldn’t get off fast enough which resulted in a pretty bad 3 1/2″ second degree burn which over a month later still bears a scar.  Fun times right?  You’ve just gotten a portrait of my daily physical existence.

Now granted, I’m not saying my Myelopathy story is the standard.  Because every Myelopathy is different.  Mine is a result of 3 full levels of cord compression and an unknown factor on how long it had been there.  My best guess is since 2009-2010 and they found it in 2015.  

For those of you not in the medical field.. a little lesson.  Your neck is called the cervical spine (C-Spine for short) and is made up of 7 bones named C1 to C7.  C1 is at the base of your skull and is called the Atlas bone and combined with its axis joint is what gives your head movement.  I had cord compression between levels C4 to C7 with signal intensity in C5/C6.  Cord compression is bad enough, but signal changes in your spinal cord that are seen on an MRI is never a good thing.  If they catch it early enough it can be reversed.  

In my case it did not reverse, probably because I had no trauma or indication other that a stiff neck and shoulders since 2009, so really there was no way to tell how long I had Myelopathy let alone how serious it was.  Which leads me back to my now daily life full of pain and fatigue.

Now when something like this happens, you read everything you can find.  What I didn’t find was the untold emotional pain that comes with such a profound cost.  I can’t begin to put into words the emotional cost of this and not just me, but to my entire network of friends and family.  It’s important to address the pain – not only the physical pain but also the emotional.  Pain demands to be felt, it reminds us that we are only human.  Even with continued talk therapy, I still struggle with this on a daily basis but it’s important to remind my fellow victims of Myelopathy, that while our stories are all different, we are not alone in our daily battle.  For those of you that walk along side us in our daily battle, thank you. We are forever grateful to have any support  or a kind word that gives us the courage to face another painful day.

The Free Comedy Performance of…..The Pharmaceutical Vultures

To give you a little insight… my neurologist is not apart of a group per se. He just added a second doctor as my doctor is approaching retirement age. So for whatever reason the receptionist/nurse just got a whole lot more of respect from me in the way she manages these pharmaceutical reps and their pushy agendas. I can only imagine what an entire week is like when i only saw 5 minutes.

So as I sat in the waiting room for my regular neurology appointment, I witnessed something I’d only ever seen every now and again at physicians offices while I sit in their waiting rooms waiting for my name to be called.  Today was to be different.  Today I would be swarmed by pharmaceutical reps – 5 in less than 5 minutes – all come bearing their free samples of their multi million if not billion dollar babies – their asking price for said samples?  A little face time with the man who would prescribe their miracle drugs with a hefty price tag attached to it.  

The comedy in it is they look at other reps like their drug is better then the other reps drug when in reality – they are not doctors or even scientists.  They do not possess the necessary education or practice to make that judgement on which medication would be better suited to the patient, but from what I saw between a couple of these reps was nothing short of a stare down contest or maybe better described as a professional pissing contest.  

So “reps” – a little reality check – the world is full of enough assholes – you are not hot shit – you didn’t invent the drug – you are a modern day door to door drug dealer.  So how about treating the medical staff with respect and stop the ass kissing.  The physicians will be the one to decide if your medication is right for the patient – they aren’t going to prescribe it to every Tom, Dick and Harry that goes through the door just because you laid on the smooze and offer up a free dinner.

Don’t get me wrong, they are a necessary part of the medical system where the free samples of their patented medicines aid in those people who can not afford their medicines otherwise – even with a prescription plan.   But even with the generics, without insurance its painful to imagine any person that is considered low income or poverty have to make decisions -like my medicine or groceries. So by all means – pile on the freebies, your companies make more than enough money.  But the unfortunate folks who need your medications – don’t need to hear your bullshit that goes with it.  If that isn’t possible, let’s add at least one more warning to the plethora of side effects to medications:

WARNING: This product may cause nausea, vomiting, or diarrhea.  Other side effects may include: headache, drowsiness, dizziness, dry mouth or irritability.  Contact your doctor immediately if you experience shortness of breath or heart palpations. Do not stop this medication without consulting your doctor as this may cause an unsafe drop in blood pressure.  Consult your counselor if you have a sudden urge to punch the drug reps in the face.  Contact your lawyer if said urge manifests into reality.

Groundhog On Toast?

So our buddy Phil the groundhog predicted 6 more weeks of winter.  Seeing as winter is always been my most hated season ever since that immunity to cold wore off during my childhood.  You know that time in your youth where you can spend hours upon hours playing in the cold damp snowy weather?  That groundhog has irritated me in such ways that sent an adult female into a temper tantrum where all I want to do is shoot it and stuff it in defiance of its irritating predictions year after year.

Ok that rant is over.  Happy to report still progressing on my 5 goals of the year even if it’s babysteps. 

Now off to my next adventure in this chapter of my journey… return to Aquatherapy.  Stay tuned for that fun filled report.