The day I visited a new doctor was the day I realized how chronic my life had become.
I remember sitting, on the exam table with the paper blue gown draped over my body parts while the “next doctor on my to-do list” reviewed the medical notes that told the story of my life. She “uh-hu-ed and oh-hoo-ed then paused and turned to me with a quizzical look, “You’re divorced AND disabled?” she wondered aloud.
I paused briefly while I pondered her question then responded, “Yes, yes I am.”
She looked at me before returning to my thickened file and said, “Well, that’s too bad.”
“Yes, yes it is,” I said out loud.
The rest of that appointment was a blur of medical terms, and test results and options listed, and follow-ups discussed, blah blah… blah blah blah… blah.
Yet, what I took home with me that day, what I remember the most from that appointment were those two words, divorced and disabled, being used together in one sentence…and they were pertaining to me!
Being a chick that takes a while to digest my life’s events; it had taken me seven years before I said to myself one evening, “Welp, I’m pretty sure he is not coming home,” signaling the “D” word “divorce” entrance into my vocabulary.
Being a chick that takes a while to digest my life’s events; I had never, ever said the “D” word “disabled” out loud in reference to me, let alone label myself with it.
And now here I was smack dab in the middle of “divorced and disabled” with nowhere to go, nowhere to turn, and nowhere to run.
Those “D” words had chased me down and caught up with me.
I left the physicians office that mid-winters afternoon muttering under my breath, “I hate “D” words.” And I meant it.
Divorce left me alone. Disabled left me housebound.
Neither one of those “D” words are ever pretty in themselves.
Sooooo many people have struggled through either one or both of those “D” words, I am aware. And it’s those folks that I am thinking of today as I write…
The guys and gals that just found out about their “D” words, those who have said those “D” words for the first time today out loud, those who are in the midst of “D” words, or those who have long learned to navigate the stormy seas of “D” words. I am thinking about all of you. I am imagining your faces, your stories, your lives.
I am remembering that I am far from alone in “D” word living. You other “D” word live-ers….you inspire me…just thinking of you inspires me.
For the sake of “nobodies business” I am leaving the details of “D” word #1 out of my letters.
For the sake of self-therapy and the possibility of helping another fellow struggler I am getting down and dirty about “D” word #2.
About 150 million people in the USA live daily with some form of chronic illness. Many with multiple conditions.
If that’s you, welcome to Chronically, Kim.
If that’s not you, thank you for caring for folks like me who struggle every day with disease, illness, residue of accidents, or yuck that won’t go away.
And to all of you, thank you for being here. We will “talk” again soon.
Hi, My Friends! Letter 2
I thought I would devote this note to the list of chronic ailments that I figure qualify me for writing you letters like this.
After all, I am not a physician, specialist, therapist, nurse, or even anyone very important.
I am just a chick who has been living through several all-the-time illnesses for many years and have a heart to share with other warrior/sufferers so that all of us may be reminded that we are not alone.
Rewind 30 years.
I was a healthy, happy, productive, busy, successful wife, mama and homemaker.
All my life I had dreamed of family, as in staying home and taking care of my nest, and my dream was unfolding nicely.
After a fun day at the zoo with my hubby, our two little boys and some friends and their kids I remember riding home feeling especially tired.
Not bad, just tired.
I shrugged it off to the days outing, went home got my family some dinner and we all went to bed.
Little did I know that this would be my last day of living “un-chronically.”
The next day I awoke and well, I couldn’t move.
I couldn’t walk. I couldn’t talk.
I couldn’t breathe. Something was terribly wrong.
I crawled down the stairs and lay on the living room floor.
What was happening?
I assumed I was coming down with a virus. But if that were the case this was like a virus I had never known.
My good mama came to the aid and spent the day taking care of my 3 and 1-year-olds while I lay on the hardwood floor.
I. Could. Not. Move.
My breathing was faint. I felt like I was to pass out at any minute. I noticed my pulse ran very, very slow.
“Maybe you should go see the doctor if your that sick,” My mom said by the afternoon.
Not thinking straight and not knowing what to do I followed her advice and crawled out to my car and drove (I have no idea how) 8 miles to the next town.
I had not called for an appointment.
I just remember walking into the small office, looking at the receptionist and saying, “Is the doctor here?” while I walked back into the examination rooms.
As I entered the narrow hall a nurse came over to me and said, “You can’t be back here” as I fell into her arms and passed out.
I woke up on an examining table.
Two nurses were standing over me shaking me, “Kim, open your eyes. Don’t close your eyes. Don’t go to sleep. Stay awake. Wake up. Look at me!”
Everything was muffled. My breathing was obviously labored. I couldn’t speak. I couldn’t answer.
I realized this was bad when one nurse took my blood pressure and I heard (something) over 3.
The bottom number of my blood pressure was 3.
I saw the nurses glance at each other with deep concern on their faces.
“Quick, go get the doctor,” the oldest nurse said to the younger. She hurriedly left the room while the elder nurse kept coaxing me awake.
Long story short…by the time the doctor came in he had no idea what to do with me and sent me home after drinking a cup of water and laying there for an hour.
The nurses were mortified. They had seen me at my worst. He had seen me as I was slightly rousing.
So, the nurses basically carried me to my car. And I drove home.
This was my entrance into the world of the chronic.
The world of invisible illness.
The world of the “Spoonies.”
The world of the “we don’t know.”
The world of the never-get-betters.”
In the blink of an eye. In one overnight.
My healthy, strong, productive body had turned into a temple of pain, weakness, and exhaustion.
And for months and months and months and months, no one could tell me why.
The day I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Fibromyalgia, I cried in the doctor’s office.
I jumped up and grabbed the specialists hands and shouted, “I’m sick!”
Dr. John Condemi laughed and said back, “Congratulations! You’re sick!”
When one is treading the rough waters of invisible illness one feels very alone.
It’s up to that one to keep swimming. It’s up to that one to keep their head above water.
And there are so many voices from the shore that keep shouting your way.
“You’re depressed stuck home with two little kids all day.”
“You need to eat better, exercise more, or do some yoga.”
“Try these herbs.”
“Take these pills.”
“This is all in your head.”
“I’m tired too.”
“You don’t look sick.”
“Have you tried (fill in the blank) they worked for my cousin and she was just like you!”
And the biggest, baddest voices would shout, “You’re crazy!”
So, the one treading water swims to every doctor, every magic cure, every herb, oil, home and Chinese remedy they can find in an attempt to get well.
And they swim to a licensed psychiatrist to find out if what lots of people are saying is true…
Maybe you are crazy. Maybe you are making yourself sick. Maybe you are not trying hard enough to get better. Maybe.
I understand that I entered the world of the chronic at a time when CFIDS (now called Myalgic Encephalomyelitis)
was basically unheard of and rarely believed, even by physicians.
There was no support groups, internet access, magazines, or even guidelines to help get the sufferer through their day.
This was uncharted water….and I was swimming it.
I remember canes, walkers, couches, and beds downstairs for me to lay in.
I recall crawling from room to room much of the time.
We planted chairs in the doorways so I could pass from the living room to the kitchen and sit down to rest on the way.
We arranged the “Cuddly Chair” in the corner of the kitchen with a huge basket of kids books beside so I could sit, rest, snooze, or read to my littles.
I had my “Big Blue Chair” in the bedroom for rocking, nursing, and spending countless sleepless nights…one of the worst symptoms of CFIDS.
I got sick with other things.
I stayed home while my growing family went out.
If I was feeling spunky I would go along in the car and lay in the backseat while my hubby took the kids off on an adventure somewhere.
I would cry all my tears before their return then listen to the stories of the fun that they had.
Cause that’s what a good mom does.
I once went to the zoo with my growing family….in a wheelchair.
Three times over the years I begged God to, “Take me home and get a real wife and momma in here for this family!”
Once on a very sick day, I hear the town emergency siren sounding. I was thrilled.
“Thank You,” I mouthed as I half crawled, half stumbled outside into the summer sun.
I made it to my lawn chair, lay back and smiled as I watched my kids innocently playing.
“Thank You. Please send someone to come take care of the kids till their dad gets home.”
I rested. I waited. I looked at my kids.
It seemed like forever but finally, I heard the ambulance siren and it was headed my way.
I relaxed my body with a final “Thank You.”
After a few moments, the sirens passed my driveway and continued down the street.
With tears streaming down my face, that no one saw but the Lord, I made my way back onto the couch where I would spend the majority of my child raising years.
If you are a “never-get-better” I’m certain that you can relate to this portion of my story.
If you are a “chronic like me” I bet you know that this letter drudged up a bunch of hard memories that will likely trigger my PTSD.
If you too have an “invisible illness” I’m sure you know that not every part of life sucks but sometimes ya gotta tell the tale.
And if you cried with me when you read this, then I know that you will understand that the rest of my chronic illnesses will have to wait for the next letter.
Wherever you are in your journey my friend, please know that you are not alone, though you will feel it.
Remind yourself that not every minute will stink.
That good things still happen.
That there is still life to live.
I promise that once we get past my “credentials” we will journey together through this.
I will share helpful hints, silly stores, and deep thoughts on living chronic.
We will search for treasure in the darkness.
We will swim together and I will yell good things from your shoreline.
Thank you for allowing me your time and brain space today.
Until next time.
Dear Readers, Letter 3
I hope that your today is going well.
I long for you to feel brave and important.
I pray that you don’t give up.
Let’s see…where did I leave off?
Oh yeah, lying exhausted on the couch for ALL my child raising years. Uhhummmm.
This time let’s turn the clock back just a few years…say 2014.
A lot transpired between my 27th and my 54th birthday.
Chronically ill had managed to cruelly rip many of the sweet cards outta my life deck.
I was always, always at a deficit, and I knew it.
What chronically ill left behind for me to “manage with,” divorce picked up and puked all over.
In 2007 I found myself huddled alone with the first “D” word that I had learned to hate. Divorce.
In 2014 I found myself laying bewildered and confused in my bed with the second “D” word I hated, laying right beside me. Disabled.
Since how I stumbled upon that first dreaded “D” word is nobodies business, I will slip slide into “D” word number two, disabled.
Three summertime concussions in 2014 left me a bit dizzy but not unable.
I recovered well from them all and set a great pace back to life by September.
Things were starting to fall into place a bit as a busy single mama of many children.
In March of 2015, I drove my kid to an AAU Basketball Tourney in Cortland. I loved those things.
Hurrying into the sports center my foot slipped on the icy pathway and I ba-bammed the back of my head directly on the concrete sidewalk.
I lay there for a few seconds, I think in shock, when I looked up and saw my 6’4″ basketball playing son towering over me looking down into my dazed eyes.
Simultaneously, we said, “That wasn’t good.”
Little did I know that this was the concussion that would change my life.
I don’t think I will ever be able to shake the “whap” sound of my head smacking the concrete.
Between 2014 and 2018…in a 4 years time…I would go on to receive 11 head injuries.
And FYI, repeated concussions is not a good thing.
My life was forever changed, my destiny permanently altered by:
the bash on the top of the refrigerator,
the basketball off the rim to the head,
the piece of picket fence falling onto my noggin,
the car accident,
the iron skillet loosening and falling down,
the elbow to the head while catching fireflies in the dark,
the frisbee while I was looking the other way…these all added to my permanently disabled.
I now live with Post Concussion Syndrome. Every. Single. Day.
And unless the Lord heals me, it ain’t going away.
My white-knuckled hope is that it won’t continue to get worse.
A future letter will be fully devoted to PCS and her habits.
In 2017, while still reeling from several mild traumatic brain injuries, I developed temporal arteritis.
I had never heard of this but boy, oh boy was it painful….and potentially very dangerous.
There is only one treatment for temporal arteritis and that is very high doses of the steroid, prednisone.
For months. And months.
Then slowly weaning and tapering off.
Only to find that this disease isn’t being submissive to the steroid.
So you up the dose and you try weaning again.
All in an attempt to save your eyesight and prevent an aneurysm.
FYI, prednisone messes with your body and the side effects are way horrible.
But you like being able to see.
And you don’t like aneurysms.
A future letter will be written detailing temporal arteritis and her ways.
Six weeks-ish into treatment for Temporal Arteritis I developed multiple Pulmonary Embolisms.
Them is blood clots.
And they filled both my lungs, evidently stemming from a clot in my right leg.
I should have died.
I was in the hospital for a week.
On my birthday. And Christmas. And New Years.
It was really, really hard.
I will be on blood thinners for life as doctors and specialist determined these clots “unprovoked.”
In other words, they have no idea what caused them.
A future letter will address Pulmonary Embolisms and her mannerisms.
The blood clots spawned AFIB.
And AFIB stressed my heart and lungs.
Another medicine for life was birthed.
From here we begin the “snowball on the hill” effect.
Growths in my lungs and spots requiring a Pulmonologist.
Residue and complications from clots needing Vascular Surgeons.
Shortness of breath requiring C-Pap Machine.
Weird blood work calling out for a Hematologist.
Constant, chronic bloody noses that require multiple cauterizations yells for an ENT.
(interesting fact: one more cauterize and they would have cautered all the way through my nasal septum)
Rheumatologists, Primary Care, Neurologists, tests and imaginings filled my days.
It was also during this time that all, and I mean all, of my income, was cut off.
I had absolutely no choice but to turn to my county for help.
I simply could not keep the lights on.
Temporary Assistance would help me if;
I attended their meetings, applied for jobs, answered their calls, went to their doctors,
filled out hours and hours of paperwork, got my picture taken, was fingerprinted,
attended more of their meetings and interviews to determine my eligibility
where I had to tell my story over and over to mostly uncaring social workers who didn’t give a personal rip if my needs were met. (apologies to those Social Workers who do, this simply wasn’t my experience.)
This was all done over several months where I would have to line up my own rides,
don my don’t-get-me-sicker-than-I-already-am mask,
tote my cane, and walk very slowly being sure to take the elevators
as my breathing was so labored due to all them Pulmonary Embolisms.
Let’s just say Disability combined with Poverty is not easy.
Yet, hundreds of thousands of folks find themselves doing it everyday.
Next, I found myself on the road of woman problems.
Bad stuff that shouldn’t happen when you are in menopause troubles.
Even with fairly complete workups, biopsies, imagings, etc…
no definite answers were found.
So I was left wandering in the blue and everything put on “hold”
when an internal ultrasound revealed severe urinary retention.
Speed up till today. July 2019.
I can’t pee.
The doctors don’t know why.
I can list all the guesses here and the many, many doctors I have seen just for this.
At minimal I have something called Interstitial Cystitis.
I have to self-cath several times a day to keep myself “safe.”
I am in pain most of the time.
I can pee every 10 minutes a lot of days.
I am constantly getting bladder and kidney infections.
It takes way too much time being me, I’ve decided.
So…that’s my story (so far)
I am chronically ill.
I am disabled.
I am housebound but not bed-bound.
And I’m on a journey to try and figure out how to live like this.
If your on that same path, my heart goes out to you.
I get it. In my own disabled way I get it.
And I am here for you.
Till next time.