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I ALMOST DIED LAST WEEK…


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Seriously.

And this was even a few weeks before most of the world had ever even heard the words CoronaVirus.

It was still February when having a cold was just another expectation of the next health season cycle that comes along month after month.

For me on that seemingly harmless Saturday, I’d spent a few hours with a hacky cough, sore throat, and overall achy-ness. Simple cold and flu symptoms.

I mean how many cold and flu bugs had I ridden through over the years without needing to see a doctor to get healthy and well again? Hundreds? More?

Personally, when I start feeling this way I set up Plan A: I usually just chomp down my favorite over-the-counter remedy followed with huge doses of EmergenC, then burrow down into my couch and ride it out for a few days.

Basic common sense, right?

So with that plan in mind, I certainly didn’t anticipate finding myself near death without so much as a warning.

Instead, I found myself in the ICU of a Kansas hospital for 10 days, ( 3 days on a ventilator) with tubes up the ying-yang; trembling head to toe in an attempt at fighting off fever and chills.

What the hell?

To top it off, I was heavily sedated to keep me from pulling out the breathing tube that connected me to the ventilator.

Had I gotten my hand on the tube, it could have been nearly impossible to reinsert should it accidentally become dislodged in my confused, drugged state.

When waking from a coma while on a ventilator the first thing one discovers is a breathing tube filling your throat and gagging the crap out of you. Horribly frightening.

That little cold bug attacked me with a vengeance. While my bug wasn’t the Coronavirus (it was actually Haemophilus influenzae B bacteria), it was just as dangerous and with many of the same symptoms.

I had a fever of nearly 104, the inability to speak at all, (my lips moved but nothing came out,) and a huge red blotchiness on my neck that kept growing by leaps and bounds, threatening my ability to breathe should it head inwards to my throat.

I was scared to death for on top of everything else happening I kept overhearing bits and pieces of conversation between my team of docs and my daughter (also a doc) discussing my situation. It didn’t sound good.

I was especially concerned when I heard them talking about whether a standard breathing tube would work or if they would need to perform an emergency tracheotomy; a surgical procedure cutting a hole into my neck to keep me able to breathe should the swelling in my throat close off my ability to do so.

That, combined with sedation ( kind of like being really drunk without the fun) which leads to crazy hallucinations, it was hard sorting reality from delusions. I kept praying that the whole thing with a huge nightmare and I’d wake up any minute. But no such luck.

My daughter and my man friend held my hands for most of that 36-hour vigil. While I don’t remember most of it now, I’m told that the process of inserting (and removing) the breathing tube is something you wouldn’t wish upon your worst enemy. 

And despite the fact that I was under sedation, I still experienced some of the fear, pain, and anxiety that goes with a procedure like this. We patients don’t often understand what the heck is going on. And when you’re in a situation like mine, where I couldn’t speak nor write, panic was my frequent, unwanted foe.

When I was still awake I even tried using my cell phone’s keyboard to type my urgent words for my family, but I was so shaky that my inaccuracy only made me look like a kindergartner.

Finally, after 50 minutes of playing with letters on a child’s slate, I was able to eke out to my desperate family, the words I so desperately wanted to them to hear: “Tell them I’m a nurse!”

I think my team was disappointed in my answer and I could read in their faces that they felt a bit down after all the work and time involved for what seemed to be an irrelevant detail. But for me it was huge.

Later (when I could talk again), I explained to them, how I wanted them to quit talking to me like an idiot. And how I desperately wanted to be a part of the team overlooking my care. It was my body, after all.

Not being able to share the ability to communicate made me feel like I was in prison. Or perhaps stranded on an alien planet. By then my fear and frustration levels were at a max.

Yet I quickly realized that the simple act of hand-holding can be a huge, emotional lifeline for someone lost in the confusing drug-induced state of sedation.

At the same time, simple touch was a huge prize to my family members when I finally squeezed back, sending them the first inclination that I was returning to real life.

Being unable to speak with the tube in my throat, made communicating difficult for sure. But just feeling the connection in our touch was some of the best medicine that kept me going. Of course, a simple thumbs-up hand signal didn’t hurt either during my more lucid times.

Another lesson I learned during my visit to the ICU is this: Timing is everything.
If I’d followed Plan A (outlined at the beginning), I’d likely have waited much too long to see a health care provider, thinking what I had was just another cold.

Fortunately, one of the nurse aids where I live, saw me moving my lips without any accompanying sound and likely a very confused look on my face. She was actually thinking I was having a stroke and she called 911 immediately, while I kept trying to convince her I was FINE.

By the way … What’s up with all this “I’m fine” rhetoric by people who are clearly not fine?

I realize that most of us hate taking the time, energy, and money that goes hand-in-hand with a visit to your favorite clinic, doc’s office, or God forbid, an Emergency room.

But not every person who’s “Just fine” is actually as uncomplicated as they would like you to believe. In my case, that simple little cold I had, could have proven fatal if I’d played the Wait and See game any longer than I did.

I have to admit that I too sat on the fence, debating what I should do as my cough grew and my throat started complaining. It was 5:30 AM when the whole coughing started after all.

While not many clinics or doc’s offices are open that time of day, the ER is always there. And while you may think it’s a bit extreme, I remind you just how fast things blew up that morning for me.  

I can’t tell you just how many ‘ fine’ folks I have run into this cold and flu season but whose medical condition didn’t match.

In fact, a couple of friends played the I’m Fine card with me recently …one ended up in the hospital with pneumonia and the other friend has difficulty breathing but continues insisting he’s fine as we listen to him struggling to push each breath out of his lungs.

Is it fear of hospitals? Of pain? Or worrying about paying the bill?

Or perhaps with men at least, does it have something to do with pride? You know the kind: “The tough guy.” And tough guys don’t get all upset over a runny nose and a little cough. Perhaps it has something to do with the “real men don’t ask for directions,” philosophy.

On the other hand, a gal pal of mine drove me to the emergency room when I’d been pretty ill some time back. As the nurse was getting me checked in, my friend was describing some very uncomfortable symptoms she was experiencing. She described how her heart wasn’t beating right, how she had shortness of breath, and how her pulse was quite high.

As she was explaining her symptoms to us I asked the nurse who was admitting me what she thought of my friend’s symptoms. The nurse promptly called for more help and rushed my friend to the cardiac unit where she needed an emergency heart cath and stent placement that saved her life.

Good thing we were in the hospital already. If she would have experienced her symptoms at home and told her husband she was just fine, as she had other times, would she have gone in early enough? Maybe. Maybe not.

Would you know when to call for help? Or would you still be holding out, insisting you’re fine? Despite the thousands ill or dead each day?

Don’t let pride or some other reason keep you from possibly saving your own life or someone you love.

Don’t just be fine. Be safe. Be healthy. Stay alive.
Mary Jo Fay, RN, MSN

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126 Days a paraplegic


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Many of you have wondered where I’ve been for the last several months. Well, forgive me for keeping you in suspense but I am finally in a place where I can talk about it … somewhat. 

The short version is that on May 16, 2018, I experienced something similar to a stroke, only in my spine, following a very high-risk back surgery to stop the incessant, intense, horrifying, round-the-clock pain I kept having; Pain episodes so severe my friends were racing me to the ER in the middle of the night and praying that the docs in the ER could catch my pain somehow, and even they had a hard time getting me relief. 

What started all this in the first place? several of you have asked. I’d struggled with this bad back thing for years and had had several surgeries before this one. I’d even had the max allowed number of spinal injections filled with steroids with only mild success. 

But, apparently, my spinal canal was too small for me, as far back as birth. Then, unlike most folks who find that having 5 lumbar vertebras are enough, the good Lord thought he’d give me a spare, L6 vertebra – (only 10% of the population have this) adding, even more, crowding to the already narrowed space in which my spinal nerves lived. Now add my spinal cord to those extremely tight spaces and each time I would move a certain way all those nerves got smashed to pieces, jolting me with what I was certain must be similar to being jolted by a police Taser. 

Just horsin' around with Murphy

Of course, years of riding jumping horses, (and the falls that go with that), shoveling snow, falling on ice, roller skating and all the many things we do in life in my 62 years that weren’t helpful, all played a role as well. 

I eventually learned that the spine has a way of being heard.

Oh and yes – one more small detail … I had been diagnosed with Parkinson’s disease in 2011 and had been dealing with all that goes along with that for years. (The tremors, weakness, balance issues, etc. etc.) I’d kept pretty quiet to most folks about that one. Knowing you have a disease that will only continue to get worse as time goes by isn’t something people want to hear about. Yet it had already taken much of my time and attention. Little did I know just how small a role my Parkinson’s would play in my grand scheme of things.

And so, the only remaining option was surgery, even though my odds were only 50/50 that it would fix me. We had no other options. No one could live with that kind of pain and have any quality of life. So we went ahead with the surgery. I tell you what, in these circumstances, I’m so grateful to have a doctor in the family helping me weigh all the possibilities because this was an especially tough one. 

It was a very “big surgery”, they called it, as they expected it would be. It lasted many hours, there was trouble keeping my BP up, I lost a lot of blood. Spent the night in ICU. And then we waited for several days; waiting for the swelling to go down to see what the outcome might be. The good news was that the pain was gone!!! And has remained gone these last 4 months! What relief!! Definitely worth taking the risk for.

But when the dust finally settled and they quit poking me night and day to see what I could feel and what I couldn’t, their best answer was that I had had a spinal cord infarct – somewhat akin to what a stroke does to a brain. Many of my nerves seemed to be “sleeping,” they said… “justifiable after so many years of living in their very tight space. We’ll know more when the swelling goes down,” they said. “How long might that be?” I ask them. (I’m thinking when you break a leg you are fairly well healed in 6 or 8 weeks, right?”) but when it comes to nerves they can take a long, long time,” they replied. “Easily up to a year or more.” 

Then, the WHY ME set in.

What did that mean for me? What did my world look like? Were they talking Permanent? Temporary? Was I going to be the lady in the wheelchair for the rest of my life? Was God punishing me for something (else?) Hadn’t he piled enough on me already? I was barely able to handle the Parkinson’.

Tears began to flow and they would flow for months.

I tried to understand all this info, while still loaded on pain meds. My world was spinning. I couldn’t always tell what was reality, and how much of my confusion was the drugs talking. 

They were all so serious around me. I’d catch glimpses of the docs shaking their heads. No one could give me any answers as they were just as confused and surprised by this outcome as I was. The only thing that came through clearly on more than one occasion was that I would need to “learn to walk again.” 

They just sort of threw the term out there as if it were nothing more than spending a few days day at the gym. No problem, she’ll be fine. 

They obviously have never had to do it themselves. 

I have come to learn that learning to walk is the hardest thing I have ever done in my life. I’m writing this at day 130 post-op and have spent all these days in OT/PT literally learning what Baby Steps means! 

It was only after about 4 months of therapy that I became remotely strong enough to walk with a walker for the briefest of seconds. I’m still practicing, but am not nearly ready to walk solo yet, much less in public. Yet, my team of experts all continue to assure me that I will make it – I will walk again – and fairly soon. At this point, walking 5 minutes is still exhausting.

Of course, they don’t tell you that just because you learn to walk again, doesn’t mean that everything else just falls into place again automatically either. You have to focus all your attention on each step and balance.

You have to learn to navigate stairs again. You have to develop a huge amount of patience, cuz Honey, let me tell you, just because you walked for 30 minutes today doesn’t guarantee that your body will cooperate and let you walk 5 minutes tomorrow.

Then there’s learning how to get in and out of the car (as a passenger – not even a driver… driving is months out for me yet.)

Having a 3-month-old granddaughter to watch now, I see all the tiny baby step movements she’s learning and I appreciate her grimaces and groans she makes as she strains to meet the mark.

I suspect that before they let me go home, another couple of months or more will go by as I learn to be my strong, capable self again and can be safe in my own home.

So, in the meantime, I am living in an assisted living facility in Topeka, Kansas. It’s just down the road from the outpatient OT/PT facilities, where I go most days of the week. (In case you’re wondering why I left Denver after 35 years to move to Kansas, my daughter is an orthopedic surgeon here.)

I get around with my motorized wheelchair. I am yet unable to stand and support my own weight without holding on to something for dear life … a fine thing if you hate weighing yourself as I’d fall in a heap on the floor if I tried getting on a scale. 

BUT – I’m getting stronger every day and have actually worked up to my rather clumsy “walking” (such as it is) 25 feet with a walker and with 2 therapists walking adjacent to me to make sure I stay upright. Of course, the steps don’t look too strong yet but they too are improving each day. 

By the way, the official label that goes with my type of injury is “Incomplete Paraplegic,” meaning that the spinal cord was not completely severed, and as such, my possibilities of healing more fully, are likely. As opposed to someone who has a completely destroyed spinal cord, forever and ever, Amen. It also means that I still have normal bowel/bladder functioning…Thank you, God, for little favors!

I’m also grateful that I did not end up with so many even worse things usually common in stroke patients; paralysis on one or both sides, verbal dysfunction, cognition issues, bowel or bladder incontinence, seizures, and the list goes on.

In fact, if you ran across me sitting at a table, you’d think I looked just normal and you would likely wonder what all the fuss is about. It’s only when folks see me in my wheelchair that they look confused. “But you look just fine,” they say. 

Hopefully, I’ll be kicking this wheel chair’s you-know-what for good very soon and then I may still have to explain why I walk so slowly and strangely, but at least I’ll be walking and I’ll have a good story to tell, won’t I?

Everyone keeps commenting on how far I ’ve come (in 4 months) and I’m so grateful to all the folks who kept videotaping my progress because it’s hard for me to see it… kind of like losing weight… when you don’t see someone for a while, you can see the differences much better. 

Looking back I am astounded at how far I’ve come. I forgot that it took 2 people to care for me in the hospital and rehab. 

I couldn’t dress myself or even just sit in a chair without falling over! Learning how to navigate the bathroom with a wheelchair has taken weeks to learn and to build the required muscles strong enough to shift my body to the toilet and back. (Remember, I still can’t hold my own weight up fully yet.)

While it’s amazing to see how far I’ve come, it’s still a bit frustrating as I recognize how much farther I still need to go. This is, and has been, my full-time job the last 4 months, and will continue to be so for some time and as before, no one can predict how long it will take or how long before I can go home – my ultimate destination… Sigh.

I have to admit that I’ve experienced many of the stages of grief: (According to Elisabeth Kublar Ross.) And could write a whole book just about my feelings going through each of those but instead, I’ll just encapsulate them like this …

DENIAL: 

I’m not paralyzed. They already said that once the swelling goes down I’ll be fine.)

ANGER:

(Shouting) “F – YOU God! What the hell did I do to have this happen to me”?

DEPRESSION: 

I can’t tell you just how devastating all this was and how many days I just didn’t want to fight yet another day – especially those days when all I could do was cry and I just couldn’t stop.

BARGAINING:

I begged God to fix me and I promised him I’d do anything he wanted. Guess he was looking for something else. Or maybe he had the big plan and I was seeing only a slice of the pie. Perhaps his plan was even better? Still awaiting answers on that one. All I know is that now, this far along, I’m healthy, I’m fit, I’m not crying all the time, and I have hope for the future. 

Denial. Bargaining. Anger. Depression. But I confess to not reaching Acceptance yet. Although I think I’ve (mostly) quit being so angry with God. In fact, I’m considering the idea that God gave me all this as a gift – a new job for me to do. A new book about my journey and how I can write some new angle about loss and journeys we don’t want to take. It’s too soon to say yet. – the story hasn’t even ended yet, although while brainstorming with some of my friends who have been here for me, I have shared some of the ridiculous moments I experienced that had us rolling in the aisles. Kind of the old adage, “If you don’t laugh you’ll cry.” I cried a lot … not so much anymore. Just writing this lengthy story has given me back a sense of purpose again.

Lastly, (for those of you still reading this) …..I have so many of you to thank for helping me in so many ways during this unrequested journey. First and foremost to my daughter Dr. Shaun Steeby, who at 8 months pregnant was juggling caring for me with preparing for a baby, caring for her husband and step-son, and still performing surgeries, all at the same time. So glad she was rewarded for all her support with the coolest baby ever! (I became a Grammy throughout this too!) 

Thanks to friends who came to Topeka to be with me. Nancy Stern and Ali Fisher were my angels! They were my cheerleaders as well as the comedians who kept me laughing when there were times that all I could do was cry. 

To Debbie Gavaghan and Sarah MC, who lovingly cared for my dog Larkin for over 2 months until I got to a place that she could join me. She handled my disappearance pretty well, although she doesn’t let me out of her sight now! 

My sister, Barb Walker sent me motivational cards weekly, with vouchers for massages from time to time. My incredible neighbors Rich, Candi, Debbie, Debra, Jodi, Becky, Leslie and Linda did everything from getting my dog to the groomer, to bringing me my favorite chocolate covered caramel apples, to visiting regularly, to watering my plants, to bringing my clothes from home. To Sheila and Tom who stopped by on their latest trip and brought care packages. To my new friends here at Atria where I am rehabbing, thanks to Pam, Bud and David for helping with Larkin, running errands for me, and just making the time less stressful. 

Then there was Dustin, my good friend, and incredible masseuse, who worked on my horribly knotted legs each week when I could have easily become a concrete statue without his skills. 

Of course, there were so many doctors, nurses, aides, techs, therapists, and bus drivers who got me to therapy n the wheelchair so many days. There were even people who prayed for me just because their friends asked them to. (Thanks Teri – your voices were heard.) 

I know I’m forgetting some important people here. Please know that the drugs and the trauma of the situation itself have left me with some gaps. I apologize sincerely if you weren’t mentioned. I hope you will know how much I appreciate you all and look forward to connecting with you still as I continue on my journey of healing and getting my former abilities back. I know that Larkin can’t wait until we can get back to walking the 3 1/2 miles per day we were walking right up to the day before surgery. But I suspect she’ll take whatever she can get while I heal!