Wednesday, August 27, 2014

That's Amore! Just Out Of My Grasp


08/28/2014

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.

LOVE…YEAH, I SAID IT

Let me go back to last week. The visit to the urologist was inconsequential. Apparently, this little oddity occurring in my kidney is a fairly routine occurrence. So, with that, the entire system there is good.

Carry on.

Results from the oncologist are in the works. My appointment there was Tuesday, the 26th. Absolutely amazing doctor, Dr. Trillo at Texas Oncology. I had 15 tubes of blood drawn, scheduled for another CT scan, probable endoscopy and referral to GI doc. Keeping my mind off the blahs, let’s talk about something fun, you know, warm and fuzzy.

How many times do you say, “I love you”, in one day?

I average about ten times.

Yup.

Ten, on a slow day.

My family has been big on amore since forever. Grown men, including my sons, brother, and brother in law routinely tell each other, and the rest of us- their heartfelt replies several times in one visit.

I told my daughter about 3 times this morning as she was getting out of the car, she rounded the car and was walking into the high school gym. Actually, those 3 times were a reply to her initiated “I love you, mom”.

It isn’t uncommon for us to say I love you 3 times in one telephone conversation. Even more by text, and probably even more still in a Facebook post.

Do we mean it?

Hell ya!

Life is too long to let a day go by without telling someone you love them. I would venture a guess that you have at least one person to remind on a daily basis just where they rank on the emotional cardio scale.

It will make you feel better.

I challenge you for the next week. Keep a stroke tally every day of how many times you say “I  love you” in one day. I want to know your number for the week.

If I get enough replies, I might be encouraged for some type of giveaway.

I love you guys, take care of each other.

 

 

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.

 

Thursday, July 31, 2014

A GOODtime Out Chair? Just Out of My Grasp


07/25/2014

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.

A GOODtime Out Chair

I have an obsession with #Ikea, I admit it. It’s almost an addiction that makes me giddy with excitement thinking about my next trip to our Euro-Texan Megastore. I hate to tell you, because I don’t like sharing the information, but, the second Wednesday of each month is their scratch and dent half-price sale day! ZOINKS!  Which means, the already marked down as-is items are further marked down like half of the sale price! I’ve had carts and carts of merchandise and taken three trips one time to get it all home. True. Story.

What this has to do with my disease is that mental health is just as important to me as my physical health. They are dependent on one another for me to lead a successful life. I try to think of ways to minimize stress and bring smiles and happiness as often as I can. I started thinking about a recent purchase I made and it made me stop and ponder.

One of my absolute favorite people in the world is a pre-schooler who’s stolen my heart. I love him so much that when I think of this little guy, I can’t help but smile from the inside out. I mean, look at this little face:

I call him my quasi-grandchild. His name is Landon. 

So, I buy Landon things from time to time and I found him a chair at Ikea during one of the scratch and dent days. It’s green and just his size and the cutest thing. I need to put his name on the back of  it, and will do that as soon as I can decide how I want to do it. For some random reason, the chair crossed my mind this morning as I sat on the bus headed to work. I thought this chair would be the absolute opposite of a discipline spot. So, definitely not a time out chair. But, what about a goodtime out chair?

The wheels begin to spin and I thought of my years growing up. We had the stool in the corner and the whole dunce hat stigma of being sent to the corner at school. When I became a parent, we had the whole time-out phenomenon to hit the parenting scene and remove the child from the situation. (personally, I still believe a spanking is appropriate- but this post isn’t about that).

Did we ever have a chair that would be a place of happiness, joy, success, or virtue measured by our good deeds, thoughts, and behaviors? No, I cannot remember one.

So, I decided to make Landon’s new chair a GOODTIME out chair. That will be its purpose. When we catch him doing an act of kindness, joy, chivalry, or whatever, he can be rewarded by sitting in the chair and receiving praise or equally recognized attention. Could it be the new craze? Why even be a craze when it should be routine.

How about when we catch someone- friends, coworkers, kids of all ages, family, etc doing something kind, noble, or generous we say how proud we are to see it? It isn’t condescending or rude, it’s affirming and bolsters a person’s regard for others. What makes me smile is the look I get from someone when I acknowledge or appreciate them. It is warm and fuzzy and certainly not something I’ve always done or maybe even do enough now. But, I’m trying to do better.

Tuesday, July 29, 2014

"Right" or Wrong...We'll Always Have Brownies

Happy Hot Tuesday and another edition of Tuesday Tales. Today, I return to my current WIP, Multiple Scorgasms for my Fantasy Leagues series. This week we write to the word prompt "right".
This book is currently with a set of beta readers, I'm excited for their feedback. But, for now, let's return to Lola and her co-worker, Eugene.

“Eugene, can you take over for me tomorrow?”

“Lola, you are not going to wimp out now. You aren’t bleeding or in the hospital. Put on your big girl panties.”

Eugene wasn’t going to let me descend into the cave. Somehow, I think he sensed danger in letting me wallow. Fucker. “You’re an asshole.”

“Yeah, maybe so, but, you don’t pay me enough to take your place on a Sunday, so get over it.”

“I hate you sometimes, Eugene.” My stomach burned and my eyes narrowed. “I’m not paying you anymore money!”

“This I know.”


“You are impossibly immature. I don’t know what your problem is, but, PMS never lasts this long with you. I hate to ask, but, what gives?”


What? Did Eugene just ask me what was wrong? I’m sure my dazed and confused look created the equally distressing appearance on his. Do I tell him I lost both my men in less than a month? No I don’t. “Every time I watch football, I think about Rudy and it’s almost too much.” I plopped down in the chair with less grace than an Alka-Seltzer dropped in water.  Plop plop fat fat…you know that tune. Maybe I changed the lyrics a little. My recent obsession with pie and brownies had something to do with it.

“Have you seen Rudy?”

“No, I did talk with a buddy of his. He is only seeing family right now, and his agent.”

“Is he permanently paralyzed?”

“The doctors can’t say yet. Of course he is receiving top notch care and all the latest advances.”

“Are you permanently paralyzed?”

I pursed my lips and stamped one foot like a spoiled child. “No, you know damn well I’m not.”

“Then, quit acting like it. If you are truly friends with Rudy, you will honor his life and his passion by fulfilling your own and those twenty-six projects showing up tomorrow."

“I…I…screw you, I hate it when you make sense.”

“I’ve told you from the beginning. I’m all business- no frills. If you want someone to lie to you, you should have hired someone else.”

“I’m glad I hired you. I pay you to make me feel good, in a way, you’re my gigolo.”

“Why must you reference sex in everything? I’m walking away now.” Eugene left the room, his quick stride getting him away quickly.


 He got more than one thing right in that conversation. I did try to reference sex with everything. I wondered how much longer I could get away with it.




BEFORE YOU LEAVE ME FOR SOME OTHER AWESOMELY TALENTED WORKS, PLEASE CHECK OUT MY LATEST REVIEW!  Here's just a snippet- "The main characters are realistic and draw the reader into their struggle to explore their feelings and build a relationship. With elements of love, friendship, erotic sex scenes, humor, romance, and a hint of suspense, this titillating tale fires up the senses to deliver an entertaining read."
Goodreads Ind'Tale Review Sexy Bea Spelling 

Now head over to our main page for more responses to the word prompt "bloom"...;)Tuesday Tales Main

Thursday, July 24, 2014

Turn It OFF! Tinnitus is More Than a Funny Word

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.

TINNITUS is more than a funny word…

Our family takes several camping trips per year. We love getting knee deep in nature and enjoying the beauty of the outdoors. The majority of the time we camp in tents. (the broad spectrum of pros and cons of tent camping could create an entire book- I’ll probably start a new thread on that someday) Anyway, we are all settled in one night and drifting off to sleep when my five year old niece yells, “Mom, turn it off!”

Huh?

It took us a moment to figure out she was demanding we silence nature – the crickets, frogs, cicadas, etc. We had a full laugh over that one. She begrudgingly stopped crying and finally went to sleep. It makes sense to us as adults that some things we just can’t turn off with a switch. But, when logic strays far off the reservation of reason, I feel so much like a five year old.

I’ve had an incessant ringing in my ears for the past eight years or so. It began gradually. One day I noticed the sensation and likened it to a sinus infection, allergies, congestion or whatever. Rapidly, the noise became louder and louder to which I received no relief. I even attempted to participate in a medical study for tinnitus. (I was rejected from the test group for answering yes to occasional feelings of anxiety. REALLY, ya THINK? You have 24/7 ringing in your ears and tell me you wouldn’t have bouts of anxiety too.)

The tinnitus began a few years before the other physical symptoms began. I also suffered some severe vertigo that an ENT physician diagnosed as BPPV. Benign Paroxysmal Positional Vertigo (BPPV)* – Anytime I would look up I became obnoxiously dizzy and nauseous. It scared me, but after a few simple doctor recommended home treatments, it finally went away.

However, the tinnitus began around the same time. I have times when the ringing softens and fades some, but, it never completely goes away. Mayo Clinic - Tinnitus




There are some medical studies that support tinnitus as a symptom of fibromyalgia and other autoimmune disorders. However, there are conflicting reports that claim the two are not related at all.

I realize that over the past few years is when my autoimmune diseases surfaced more prominently. However, I’ve had other slight symptoms, such as the tinnitus/hives/anxiety/chest pains that were present long before I reached full blown flares and a diagnosis.

I must believe that inflammation in my inner ear is causing the ringing reaction. I will continue my research and hopefully find some answers. But, as many of you are well aware, finding an answer is not always easy and it takes perseverance. Sometimes, it’s all I have to get up in the mornings, but, I can’t just give up. Maybe I should say, I WON’T just give up. I want to feel better again.

*According to Web MD- Benign paroxysmal positional vertigo (BPPV) is caused by a problem in the inner ear. Tiny calcium "stones" inside your inner ear canals help you keep your balance. Normally, when you move a certain way, such as when you stand up or turn your head, these stones move around. But things like infection or inflammation can stop the stones from moving as they should. This sends a false message to your brain and causes the vertigo.