Wednesday, August 20, 2014

Fix My Funnel, Please...Just Out of My Grasp


Good morning!  I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost two years. Initially, my rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia. 

In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.

Thank you for listening, each week I will have a new installment chronicling my journey- Which is now more frustrating than ever. I test positive for ANAs in my blood, but, the lupus tests are negative. There are several varieties of autoimmune disorders, with different caveats and health variations. Learning to live with the unknown has become my routine.

WILL YOU FIX MY FUNNEL PLEASE?

At some point I will feel more than 75% all the time. I live with that hope every day. I’ve said it before, but it bears repeating, I’m so sad that I went from a very active triathlete to someone who can barely make it through a 30 minute cardio class.



Ugh.

Within the past three months I’ve had what feels like a chronic UTI. If you’ve ever had one, you know how it really jams up your gears. Also, lethargy increased and I can’t seem to get enough sleep. I have a chronic sore throat, and those occasional kick my ass migraines. The real cruel twist of nature is the feeling of shin splints in both legs when I lie down.

F’in really?

I only wish I could run again to get shin splints

Oh, the other minor, but, oh so important to me detail, I’ve gained 30 pounds in the past two years.

I’ve gained 30 pounds in the past two years, and I’m not on steroids. I don’t need them. I only occasionally take Lodine or Naproxen.

I decided to make an appointment with a vascular doctor. I thought maybe a hernia was to blame for the full time abdominal pain, pressure, bloating, and discomfort. The doc was great, listened to me, and ordered a CT scan with IV contrast for my full abdominal and pelvic area.

Well, come to find out there is no hernia…good news. But, I have something called an external renal pelvis and it’s distended.

Imagine a little funnel emptying from the kidney into the little ureter that connects to the bladder. Usually the little funnel (renal pelvis) is located within the kidney. Mine has taken up residence outside the kidney (in and of itself still normal) but, it’s distended and now, I have this chronic feeling of UTI, with no accompanying infection.

So, come on now, you gotta be able to fix that.

Wish me luck today, I have the appointment with the urologist the vascular doc referred me to. I want at least one thing repaired instead of treating the symptoms.

Hugs and yes, I’m still very grateful for every breath and every smile. I will march on.

COMING THIS FALL #FOOTBALLROMANCE

Monday, August 18, 2014

COVER REVEAL

Am sooooo excited to show to all of you the cover for the first book in my newest series. Now, introducing, SPLIT THE UPRIGHTS the Fantasy League Series book one.

More details to come...

Monday, August 11, 2014

Keeping the Plates Spinning Until They Crash - Just Out of My Grasp


Early weekly edition of this blog regular.

Good morning!  I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost two years. Initially, my rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia. 

In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.

Thank you for listening, each week I will have a new installment chronicling my journey- Which is now more frustrating than ever. I test positive for ANAs in my blood, but, the lupus tests are negative. There are several varieties of autoimmune disorders, with different caveats and health variations. Learning to live with the unknown has become my routine.

Stabbing Myself in the Pinky

No matter how much of a bandwagoner or trending news item about Robin Williams’ passing, I would be remiss if I didn’t share my thoughts on the issue. Of course I didn’t know him or his family personally, but, that doesn’t mean they are any different than any of the friends and family I hold dear to my heart. What I’m saying is, suicide happens everywhere.

I’m very sorry for his pain and suffering and for his family as well. They will all be in my prayers and thoughts.

Several years ago, a work colleague shared the difficult story of one particular Thanksgiving. You probably see where this is going. Everyone gathered and had the typical, usual Thanksgiving Day. Everyone was present and accounted for. After the meal and get together ended, everyone went back to their respective homes, nothing appeared unusual.

However, when her mother went to her home, where she lived alone, she prepared for the last day of her life. She wrote notes to everyone she needed to leave words. In her best preparation, she thought by her choice of location it would be easier on everyone. She took a sleeping bag down into the crawl space under the house, crawled in and ended her life with a bullet to the head.

No one knew it was coming. Or, maybe they did, they just didn’t recognize the signs.

Suicide is the last resort for someone who sees nothing besides the blackness and despair inside the prison of their mind. It isn’t just a withdrawal from reality, it’s a one way ticket to never feeling anything again. Which is ideal for someone suffering with the weight of their world and who needs a permanent fix. The fear of never feeling any better becomes the distorted finality and hopeless isn’t a strong enough adjective.

I’m not telling you anything you don’t already know.

So, let’s talk about my kitchen skills.

Sunday I was cutting up vegetables for a big salad. Our family was enjoying the company of conversation and I was attempting to talk and handle a knife at the same time. A very sharp paring knife. See, since I was a kid, I could multi-task. Nicknamed the “WiggleWorm”, man, I could keep ten plates spinning in the air (metaphorically, of course) and blow bubbles at the same time. I sustained that way of life until the dreaded autoimmune disease interfered with my plates.

All but one plate came crashing own around me and there wasn’t anything I could do about it.

Okay, so it doesn't look that bad, but it's deep.
LOL

Paring knives became my plates.

The last time I had a family get together and attempted to talk and use a paring knife, I cut myself in numerous places over my hands while peeling, cutting, and canning peaches. NO, no blood was shed into said jars. I dismissed it as too many peaches, getting careless, yada/yada/yada.

But, this time in my attempt to hull a strawberry,  I ended up stabbing myself in the side of the pinky finger with the pointed end almost to the bone. (I know to use spoons when hulling strawberries for the best result- I was in a hurry to hull and slice at same time.)

You see, with my autoimmune disease, my balance, coordination and plate spinning abilities are heavily off kilter. I wobble, trip over my own feet, drop things, completely misjudge my reaching and handling capabilities, and- you guessed it- stab and cut myself with sharp objects.

I cannot carry on conversation, look away, or anything that takes the focus of my attention away from the task at hand, literally. Either I will end up uttering jibberish, lose my train of thought, or physically, whatever I’m doing will be interrupted by my stumbling and fumbling.

It’s almost comical, in a Three Stooges or Wile E Coyote sort of way.

To me, it’s depressing. My entire way of life changed and I had nothing to do about it, I couldn’t stop it. What seems minor is huge when I know that the odds are heavily in favor of forever worsening and never getting better.

Insurmountable darkness, mourning my youth, chastising the woman I was to take multi-tasking for granted. Before I know it, my family will lock up all sharp objects and invest in plastic ware.

I can joke about it, and I’ve had to tell people more than once that I was not, in fact, drunk, just intoxicated by fibromyalgia and Sjogrens. Gives the phrase, high on life, a different spin doesn’t it?

I laugh to not cry.                      

Maybe that’s how Robin Williams felt. But, somehow, he ran out of laughs. Unable to muster another chuckle, all his plates came crashing down at once and he didn’t even have one left to spin. He was tired of picking up the pieces and gluing another damn plate back together.

It’s not an excuse for him, it’s my weird understanding of where he might have been.

I’m sad. Mork from Ork introduced me to the wonder of giggles created by Robin William. As the years rolled on, his many characters, personas, and influence on the world of comedy changed. We saw how to laugh through tears and his insightful roles, for it wasn’t just jokes he relayed, he gave us one liners on how to cope with life’s bullshit potholes- and busted plates.

I’m sad today for him, and everyone else in the world who feels despair. Find someone that loves you and give them a hug. They’ll hug you back and help you pick up the plates. I promise.