Di Nowak’s Sarcoidosis Journey – Part 1

Sarcoidosis is a disease that causes abnormal collections of cells to form as nodules. These nodules are commonly found in the lungs, but any organ can be affected. It is estimated that there are between 1 and 40 cases per 100,000 people in the United States, and I am priveledged to bring you one person’s story. Please join me for the next couple of Wednesdays to read about Di’s journey with Sarcoidosis. I do apologize for the difference in font styles, but I’ve been tryig all morning to unify the font and, for whatever reason, I can’t make it happen. 

Sarcoidosis

I promised this blog a while back, and while you can say many things about me, being a procrastinator isn’t one of them, this is a direct result of the Sarcoid disease process.

So, some background information, I am hearing impaired and have been since I was a child.  Because of that, I have been proficient at lip reading since then, however, due to this, when it is more than a standard doctor appointment, I take my wife with me to make sure that I don’t miss anything.

I am also a type II diabetic whose diabetes is controlled with oral medication and diet.  I see a Rheumatologist initially I was referred to him because of an elevated ANA titer (anti-nuclear antibody) found during my yearly physical.  His initial testing of me showed markers for Lupus but because I had never had an episode he couldn’t diagnose me with that.  Subsequently he is following me for RA with minimal joint involvement.  I see a nephrologist (kidney doctor) because I have a low GFR (Glomerular Filtration Rate) which measures kidney function, also found during an annual physical.  Anything having to do with kidney function in a diabetic is something you need to be aware of.  I met with my nephrologist once and he told me to stop a medication prescribed as a preventative medicine and if follow up testing showed improvement I wouldn’t need to see him again, since I was already seeing more than my fair share of specialists.  Further testing done, no follow up needed with the nephrologist.

This journey (as I call it) started 5 years ago with the simple statement, “I can hear my heart beat in my ears”.  Why was this cause for alarm?  Well, my wife’s mother had passed away of a heart attack and one of the statements she had made shortly before that heart attack was the same simple statement.  Consequently, I promised to make an appointment with my doctor.

I went to that doctor appointment not expecting it to be any big deal.  My doctor ran a simple breathing test in the office and told me that I had restrictive lung disease and that she felt that I needed to see a pulmonologist and that my wife could better explain it since she is a respiratory therapist, so home I went referral written.  I got home and shared the information, as well as the doctor that I was being referred to.  My wife was happy with the choice of doctor’s since she had worked with him at the hospital.

I had to have a breathing test done prior to my appointment with the pulmonologist.  Once that test was done the doctor’s office called, and an appointment was made.  We met with the doctor, he went over the results of the breathing test and because it wasn’t conclusive he said that we needed to have a chest CT done.  The chest CT was scheduled and done, a follow up with the pulmonologist followed.  Again, the results were inconclusive I had some nodules in my lungs that he wanted to follow and that we should do a follow up chest CT in 6 months and see him after that was done so that we could go over the results.  If at the end of 2 years the CT showed that things hadn’t changed, I could then go to seeing him 1 a year.  One of the things that we did conclude was that I also was experiencing shortness of breath.  He thought it would be beneficial to refer me to a cardiologist to rule out heart issues being the cause of shortness of breath.

The cardiologist called, and he too wanted tests run prior to my appointment with him.  He ran a treadmill test, as well as did an echocardiogram.  We met with him after these tests, nothing was wrong with my heart and there was nothing conclusive that would account for my shortness of breath, or the beating of my heart in my ear.  However, he wanted me to have a heart CT done.  However, I was informed that insurance doesn’t cover it.  So we could see if we could get me enrolled into a clinic trial being conducted by Duke University.  I filled out a mountain of paperwork and was luckily accepted into the Duke trial.  After that test was done I went back to meet with only to be told that the results were normal and that I could see him 1 a year.  As we were walking out of my appointment with him, I was reading my end of appointment summary and discovered that I had 1 moderate and 1 mild leaking valve.  I came unhinged, and said to my wife “what does he mean I don’t have any heart problems?”  She explained to me that in the medical world this was not cause for alarm.  Unless there are more than moderate leaks they are considered inconsequently since they don’t do anything for them. 

Things stayed status quo, in that, we went to the standard yearly follow ups to the pulmonologist and cardiologist with no changes.  I had routine follow ups with my Rheumatologist, which included routine lab tests.  Until August of 2012 lab results from my previous months follow up showed that my GFR (Glomerular filtration rate ) was dropping again (it should be greater than 60 and mine was now in the 30’s) and he wanted me to go back to my nephrologist. 

He wrote the referral and back to the nephrologist I went.  He wanted labs run monthly so that he could continue to monitor my kidney functions.  Every month I went in, and we went over lab tests and what he thought was going on, which he really had no explanation for.  I was faced with informing my family with the news that I was in stage 3 kidney disease over the Thanksgiving holiday.  At my December appointment I asked him when he was going to do something other than lab work and was told that when my GFR dropped below 30 he would schedule a biopsy.  January’s labs came in at 29, so we were now facing a kidney biopsy.  He explained that they would take multiple samples under radiology guidance and that these would be sent to the UW for reading.  While we waited to get the biopsy scheduled February’s labs came in at 24.  On the day of the biopsy exactly 1 week later my GFR had dropped to 23.  My doctor called to review the pathology report basically it indicated that I had pristine kidneys.  He also informed me that he was relocating to Seattle.  He offered to refer me to someone local, however, since we had established a good rapport and he didn’t insist on my meeting with him every month I felt I was better served to stay with him.  So now we were faced with trying to figure out what was causing the declining kidney functions.  The next step, thyroid/parathyroid nuclear medicine test to see if this was part or entirely the cause.  That could be an explanation for the severe muscle cramps I had been experiencing.  While I was close to stage 4, my lowest GFR was 17, stage 4 was 15 or below.  Since my labs showed a creatinine of 1.6 times normal and my calcium was almost a full point above normal even though all calcium (or as much possible, and if you’ve ever read an ingredient label you know how hard it is to find food, or anything for that matter, that doesn’t have calcium in it).  The results were done from the nuclear medicine test, I was subsequently diagnosed with hypercalcemia, and hyperparathyroidism as well.  I was started on a medication that was given to kidney disease patients that were either in stage 4 kidney disease or on dialysis.  He wanted to continue to run monthly lab tests and confer via phone after them to determine what if any changes needed to be made or additional/different tests needed to be performed. 

Please join me next Wednesday for part two of this very personal piece. 

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Welcome, THE GENESIS SAGA Blog Tour & John Fioravanti!!!!

I loved this interview & thought you might get a kick out of it too. 😊

Watch Nonnie Write!

Hi, and thank you all for stopping by today to support one of my favorite authors in all the world!  John “Fio” Fioravanti has visited us here before but never in the manner in which he will grace us with his presence today!  John is on a 7 day/2blog a day tour and I don’t think I’ve ever been so excited about a tour!  I’ve seen only the first blog post and that’s the one you are about to see below, and from that little interview between John and I, I have been anxiously awaiting more.  So, every single day, we will be on an adventure, and we want you to come along!  This will be one of THE best rides you’ve ever taken on a blog tour, you have my word on that, and you don’t want to miss out on one stop along this tour!   So, are…

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Winter of the Drill

I‘m closing in on the commpletion of #Winter, so I thought I’d repost the first chaoter and hopefully suck you all into Decker’s world. This is not the final draft, so pleasse don’t expect perfection. Lol But flaws aside, I hope those of you who missed the first post enjoy this peek into Winter of the Drill.

Winter of the Drill

Chapter One

   A slight rain misted the December afternoon and moistened the face of the young man who raced through the alley, frantically seeking refuge. A graffiti covered doorway caught his eye as he flew past and he spun on his heel, running back and rattling the doorknob in a vain attempt to gain entry. Frantic intensity strengthened his hands and he pounded on the door with both fists, even though he knew that there would be no help on the other side. For even if there was someone there to open the door, they would betray him in a heartbeat once they learned who was chasing him. Once they knew that he ran from the Drill.

   And they would find out; though Tommy had never met the man, he had heard enough to know that the Drill would tear the city apart until he flushed his prey out into the open. He was a man who took great pride in his work, and made it a point not to fail those who purchased his expensive services.  He was also a man whose vicious reputation was legend among the hookers and the hustlers who called those dark and dreary streets their home. They would never risk his anger by sheltering one such as Thomas Gaylord Jenkins III; two-bit dealer, pimp, and all around loser in spite of his pretentious name. They knew better, as surely as Tommy Jenkins had not. But he was learning fast.

   Abandoning his attempts to gain entrance to the building, Tommy sprinted for the far end of the alley. Heart pounding, he prayed desperately for enough time to reach the cross street and make his escape before his pursuer closed enough of the gap between them to see where he went. He knew that the odds were against him, for the hellhound on his tail had been hand picked by the Drill and was as much at home on the dingy streets as Tommy himself. Perhaps even more so. Every turn, every shortcut would be known to him, and the possibility of escape faded with each passing second. But knowing that his options were quickly dwindling did not destroy Tommy’s hopes completely. There was still a chance, and it was almost close enough to touch.

   The bus station! Hang a right ,then two blocks up. I can do this! The thought of watching his neighborhood shrink into the distance through the tinted windows of a Greyhound caused his heart to thump with anticipation. Just a ticket away from a brand-new life!

But that life was not to be. Tommy was only a dozen or so steps from the mouth of the alley when a lean figure stepped out of the shadows and held up a hand in greeting.

   Tommy skidded to a stop, his stomach clenching when he recognized the man who stood before him – another of the young thugs in the employ of the Drill. Tommy knew that the man could not be reasoned with, so he wasted no time with arguments or bargains. Turning quickly, he raced back the way that he had come, cursing loudly when he stumbled over a small pile of debris. His shoes pounded against the damp pavement and his breath burned in his throat as he pushed his exhausted body forward. He knew that retracing his steps gave him a miniscule chance of escape at best, but to stay where he was and face the consequences of his actions required more bravery than he had ever possessed, under any circumstances.

   And so he ran.

   There was a cab parked across from the alley entrance and he felt a sudden rush of exhilaration. Just a few more steps to the street and then –

A fist struck him in the diaphragm, lifting him to his toes and forcing the air from his lungs. He fell to his knees, retching, unable to prevent the flow of urine that darkened the front of his pants.

   Idiot! He screamed silently at himself, disgusted with his own stupidity. He should have known that there would be sentries stationed at both ends of the alley and he should never have gone in, should never have looked at the narrow, rat infested passage as a route to salvation. But he was tired, and the machinery that governed his rational thought was no longer operating at top efficiency. The only thing he knew for certain was that he had gotten himself into the middle of some incredibly deep shit.

   The “businessmen” that he had so gleefully cheated wanted him. Wanted him badly enough to pay the Drill and his team to hunt him down, and the Drill was not the kind to let his quarry slip through his fingers. Therefore, Tommy knew that he would most likely be dead by morning.

   Idiot, he berated himself again when a strong hand gripped his hair, pulling his head back and forcing him to look up into the face of the one who held him.

   To his surprise, the man who had chased him into the alley was not the man who stood before him. His pursuer had been young, of average height and build, with light blonde hair poking out from beneath a blue stocking cap.

   This man was older, darker, and completely unknown to Tommy Jenkins. He was also very tall, and would have towered over Tommy even if the boy had not been kneeling. But his height was not the only thing that caught Tommy’s eye. Massively built, his broad shoulders and muscular arms left no question as to the raw power that lurked beneath the surface of his skin.

   Tommy began to whimper uncontrollably when the man lifted his hand, pulling him to his feet by his hair. Standing, he dared another quick look at the stranger’s face and saw with astonishment that it bore a pleasantly amused expression instead of the scowl he had expected. And when the big man spoke, his voice was easy on the ears with a tone that was almost friendly.

   “Look at you,” he said as he released Tommy’s hair and rested a firm hand on the boy’s shoulder. “What a mess you are. Hard to believe you’re man enough to get yourself into the kind of trouble you’re in. But…stranger things have happened.” He paused briefly, eyeing Tommy without any change of expression. “So…what do you have to say for yourself?”

   The ringing of a cell phone spared the boy from having to answer and his mind raced, trying to think of the best way to extract himself from the situation while his captor answered his phone one-handedly.

   “Hunt,” he said into the mouthpiece, laughing with genuine delight. “Damn, it’s good to hear your voice. How was the flight? Are you all settled in?”

   Tommy found himself hoping that the conversation would take a while, but it proved to be a brief exchange. “Hunt” was not a man of excess words, and only a few sentences passed between him and the giant whose fingers still gripped Tommy’s shoulder like talons of steel.

   “You’re sure you’re up for this? From what I’ve been told they’re just a bunch of kids but…well, let’s be real, bud. You’re not as young as you used to be.” There was a burst of indignant chatter from the cell and the man laughed again. “Okay, okay. Don’t blow a gasket. Grab a nap and we’ll see you tonight.”

   The stranger disconnected the call and turned his full attention back to Tommy, his ruggedly handsome face still wearing the same bemused expression.   

   His smile gave Tommy the faintest stirrings of hope that this man, unlike the others who had been chasing him, might be of a more sympathetic nature. Taking a deep breath, he met the man’s gaze and prepared to plead for his life.

   But before the first words were spoken he realized that he was mistaken, that there would be no chance of gaining his freedom. 

   The smile was still gentle, but from under a shock of raven-black hair, crystal blue eyes that glittered like shards of the purest ice bored directly into his. Devoid of both mercy and soul, they were the eyes of a jungle cat, of a bird of prey. Cold as the grave, they were the eyes of the Drill.

 

Marlena Hand in “WHO’S ON THE SHELF WITH NONNIE JULES?”

I found this in my inbox today, & enjoyed it so much I had to share. I hope you enjoy learning a few things about Marlena Hand.

Rave Reviews By Nonnie Jules

Hello, and welcome to “WHO’S ON THE SHELF?” with yours truly, Nonnie Jules!

It’s the interview everyone holds their breath on!  Where guests sometimes have to do a balancing act just to hang on!

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{Designed and gifted by the late, Author, Kathryn C. Treat}

Since we are a book club, you know we had to offer something that included a book shelf.  A lot of interviews merely cover an author’s work or an individual’s career stories.  Here on this “SHELF,”  we get down and dirty and ask the questions no other interviewer dare ask.  We ask the questions that you want to open up a book and find the answers to on your favorite authors and fellow book club members, but no one has dared to cover them.  WE get personal!  Because when you sit on the RRBC “SHELF,” YOU are an open book!

Today I have…

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Stuff Happens

I had originally planned to post a piece concerning my friend’s journey with Sarcoidosis, but an issue with the file has forced me to postpone it. So instead, I’m posting a silly little piece that I entered into a writing contest sponsored by Rave Reviews Book Club a few months ago. It was the first time I’d ever entered a writing contest, and I had absolutely no clue what I was doing, but it sure was fun. I hope you enjoy this little story.

Urp Day

    A writer’s mind is always on, spotting potential characters and plot lines in everyday activities and personal interactions.  Therefore, a day in the life of a writer is often filled with magic; with the creation of worlds, the laying of roads to be traveled, and the intimate dance between writer and character that will (hopefully) leave a reader reluctantly closing the cover and desperately wanting more.

    I’ve had a few of those days, but I wanted to share a day from my past that was not quite so…noble. The one that my roommate, my son, and I will always remember as ‘urp day’.

    Several years ago, I decided to self publish my first novel in paperback, and they foolishly agreed to help me, regretting their offer almost immediately. To this day, my roomie practically breaks out in hives whenever that little project is mentioned, while my son refuses to discuss it at all. 

    The text had already been formatted, so on that day it needed only to be printed and handed over to my two person assembly crew, whose job was to cut the pages and assemble the individual books.

    I usually tried to start each day with a devout prayer to the printer gods, because no one had bothered to tell my HP Laserjet that it was a new machine and consequently, should not jam. As a result, if I didn’t do at least one brisk skip around my computer area while clapping my hands and singing a few off-key lines of Take on me, I was sure to spend the rest of the day picking torn bits of paper from the bowels of my printer with a pair of eyebrow tweezers. I invented a whole new range of profanities before the printing phase was done, let me tell you.

    On that day, I was at the computer, doing last minute touch-ups to the text before clicking print, and Sharon and James were in the living room, cutting the pages and laying the books out in rows of five. We were running behind schedule, and I had forgone my printer dance, thinking that it couldn’t possibly matter. And it probably didn’t. I just know that by noon I’d had half a dozen paper jams, the last of them requiring a trip to the printer doc for a minor procedure called a cash transplant, in which twenty-five dollars was removed from my pocket and inserted into his. I wish that I’d had a camera that day so that I could have immortalized the ineptitude in action that resulted from two tired old fat girls and one idiot boy trying to load a bulky, oversized machine that weighed about at much as the average Volkswagon into a back seat that had not been designed to hold anything larger than a six-pack.

    Back home again, I picked up where I’d left off, printing about fifty pages at a time so as not to get too far ahead of my worker bees. They were beginning to mumble some sort of foolishness about ‘lunch’ but I wasn’t listening. The printer was working without too many complaints, and I wanted to keep going as long as it would let me.

    About that time, my cat decided to jump onto my lap. I don’t know how many of you have typed around a cat, but it requires the ability to type your own text while simultaneously correcting the cat’s attempts to help, which Silme’ did by either walking or laying on the keyboard. I moved him away three or four times, set him on the floor at least twice, and finally gave him a ball that could be opened and filled with nip. How was I to know that the little addict would pry open the ball and eat every bit of the product inside? He was gone for a little while, and I thought that he’d been adequately distracted. Suddenly, he fell from the ceiling, as cats often do, and landed on top of the monitor enclosure. I should have seen the combination of his glazed eyes and the cobra-like sway of his body for the warning that it was, but I was focused on my book and nothing else was registering. I did hear Sharon say the he looked a little goofy, but by then it was too late.

    A little vomit on top of the enclosure would have been a small thing; a paper towel would have made it a memory in less than a minute. But Silme’ never did anything ‘small’. He projectile vomited a mixture of partially digested food, mixed with the contents of one fully packed nip ball, directly onto my keyboard. Urp day was born, and the work day came to a very abrupt end. 

 

HEY! It’s the Liz Gavin Blog Tour!

The Indie Spot!

Hello, amazing readers! I am so excited to be a stop on indie author Liz Gavin’s blog tour. So please take the time to meet Liz and leave a comment for her. As always, I truly appreciate each of you.

And now, here’s Liz…

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Rave Reviews Book Club

I know I haven’t been the most active member of the club for the past couple of months and I’m sorry for that. I believe in the Club’s essential premise that the most supportive members get to be supported and I know I’m missing out on that support. But, life happens sometimes and we get caught in so many things that 24 hours aren’t enough in a day. This group of relentless people is the best one you can meet in this publishing business. I’m thankful for being a part of it and I hope I’ll go back to being more active…

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