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)
OBGYN for scary shouldn’t-be-happening-during-menopause stuff
that was deemed inconclusive even with biopsies, so we wait and see.
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.
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.