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.

Bonded In Grief – My 9/11 Story

September 11th, 2001

A day that began like any other. It was 7 am CDT and I had just started my shift at the Aon Helpdesk in Glenview, Illinois. There must have been 12-14 of us manning the helpdesk and we all became close.

Aon was a global insurance company that had offices just about everywhere – including 2 World Trade Center where they occupied floors 98-105. They had a data center there and a local helpdesk to manage end user problems – except hardware calls.

Those would have to be resolved using a 3rd party vendor. Every single day, multiple times a day, we would receive a call from their helpdesk manager Michell Robotham to open tickets for their hardware issues and dispatch the 3rd party to their location for resolving whatever issue it may be.

All of the agents in Glenview got to know Michell very well. Originally from Wisconsin, she had just been divorced and had a 6 year old daughter. We would all chit chat with her as we filled out the work orders about the day and other normal conversations. I even remember the first time I took a call from her – I remember telling her the view they had must be incredible.

The day began like every typical day. Our floor supervisor Frank was on duty. Frank was a older man compared to the rest of us as most of us on the helpdesk were in our 20’s, maybe early 30’s. He had a no nonsense attitude but also had a sense of humor, so it was awfully difficult for me to distinguish when he was serious and when he was pulling our legs.

It was 7:46 in the morning. He announced that a light aircraft had hit the Trade Center and we were trying to determine if it was North or South. I initially thought Frank was kidding. By the time Frank confirmed it was the North tower, and that our people were fine, the South tower was hit.

We all were just stunned and immediately tried to pull up CNN on our computers which either timed out or took forever to load. It was like our phones went dead – there was no one calling. Which was odd because there would be times a Lotus Notes server would go down (which was a daily event since we had so many), that sometimes we’d have over 100 calls in queue waiting to be answered. But the phones remained eerily quiet as everybody was watching this horrific event unfold. But the one question on everyone’s mind and was asked was: Is Michele ok?

The only voices we heard was our own shouting out the latest event when one of us was able to pull it up on our computers. Then the Pentagon got hit, then there was speculation that the White House was next.

Then the FAA grounded all planes. And then the hardest thing to watch was the towers falling. We knew we just lost a lot of people but didn’t know how many. Around lunchtime I remember going to Subway with Mylite and Lisa in Mylite’s minivan and there were no planes in the beautiful blue sky which was so unusual as Glenview seemed to be in the flight paths for take offs and landings.

Not long after lunch I remembered they pulled a few people including Lisa off the phones and they manned the emergency number from a conference room for Aon employees to report that they were ok. Again, we were all waiting for Michell to be ok.

I was tasked with creating PAL Ids for disaster recovery which was our form of VPN at the time because back then it was still dial up service. This would take me a day or two but the roller coaster of hell from that day was finally over and I left work not knowing what happened to our friends – especially Michell.

My first husband, who was my boyfriend that I was living with at the time, who worked at the same building and company as me never made it into work – even though we only lived a mile away from the office, was glued to the television with his best friend.

The following week the emergency line was continued to be manned in rotation with still no word from Michell. But we were told by some of the survivors that when the first plane hit the North Tower, our people were sent back up to their office space being told the problem was contained.

When it was all said and done, we lost 176 of our fellow employees – some we knew vaguely and others like Michell we knew very well. Her remains were recovered and she was laid to rest in her native Wisconsin. Every year I think about Michell and her daughter that she loved so much and it’s hard to believe her daughter is now 22 years old, and I’m sure she would be so proud of her.

9 years later I became a helpdesk manager for a subsidiary of Aon that broke off and formed a new company. I was already managing Desktop Support but would also be taking on moving and managing the helpdesk into our Chicago office. It was then we were in the heart of the financial district in the middle of 3 targets for terrorism – the Willis Tower, the Board of Trade, and the Federal Reserve of Chicago.

I immediately had zero hesitation on joining the evacuation team. I drilled the emergency procedures into my teams head – because I had remembered that day. I remembered the chaos and confusion not only from where I sat at the time but also the stories from our survivors. I remembered Michell. I remembered that your team and their safety is your responsibility. I imagine that’s why she didn’t make it out, as well as other IT management that we knew.

The personal irony for me is that the worst 2 days of my life were 11/9 – the day my de-facto older brother would be taken from me, and 9/11. But most importantly the biggest thing that I would do – is just remember, and I will always continue to tell those stories.

Miss Ellie, The Flatboys & The Banditos

A little background to start.

My father has kept freshwater fish nearly his entire life – and all of mine for that matter. I can recall countless of tanks, mishaps, and even coming home about 3 years old from breakfast with my parents to 110 gallons of water and fish strewn across the floor – some he even managed to save and would go on to live 25+ years later!

He even gave my son who was about 3 at the time his first real aquarium after his goldfish he named Nemo that he got when he was 2 was growing to be “pan sized” as my father called him.

Some of my fathers accomplishments include keeping Arwanas that were donated to the Chicago Shedd Aquarium and later transported to an aquarium in New Jersey, he has ALWAYS kept Clown Loaches (his signature fish) some as long as over 30 years.

One particular fish species that my mother absolutely loves but is notorious for jumping out of tanks like magicians and they have never had one last longer than a week or two in my family’s home is the elephant nose fish. Imagine a dolphin like head with a fish tail.

Amazingly my mother found another elephant nose some 6 months ago and because this particular fish was smart enough not to jump out, my mother decided it was a female because she was smart and named her fish Miss Ellie.

Later on my father would add 3 flounders he would name “The Flat Boys” and 3 bandit cat fish “The Banditos” to Miss Ellie’s house. Even when my father added automatic led lighting to his largest tanks, which simulates the natural lighting fish would experience at every stage of the day – Miss Ellie’s humble abode would not go without – especially when that’s my mother’s latest baby. I have lost count on how many times I’ve heard “Only the best for Miss Ellie”.

I can honestly say without any hesitation that the quality of care that every single animal received whether it was a dog, bird, ferret, lizard or fish that has come through my parents door has definitely been ingrained into my brain to the point that my animals probably eat better than me. Needless to say – they were all spoiled – including mine.

So when my parents decided to take their first solo vacation together in 36 years, I was on fish duty. While I had zero qualms about this and thankfully only living a mile away, I did have to give my parents the disclaimer just in case something happened to Miss Ellie on my watch. So fish duty would mean that:

  • Day 1: turn off the filter pumps on all the tanks and feed the fish the pre-measured food according to the spreadsheet of instructions – yes a spreadsheet. This would include into dissolving frozen blood worms for Miss Ellie and her crew.
  • Day 2: Come by around the same time to turn the pumps back on.

Rinse and Repeat. So far so good. I’ll keep my fingers crossed and hope Miss Ellie behaves.

Funny… I’d never thought I’d say that about a fish.


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.


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.