Organ Donation Goes to a New Level

I read an interesting article in “Momentum” this month, about donating my brain tissue to science.  I’m already an organ donor and have both a living and end of life will.  The hubby knows what I want and what I don’t want should something disastrous happen to me.

The other evening we discussed my newest interest – donating my brain tissue.  It’s important not only for the hubby to be aware of my wishes, but also other close family members to be aware as well.  God forbid, if he and I are injured together and he can’t speak for me, I need others to know what I desire.  It takes time to locate my living will and my formal right of passing will and perhaps for family members to try to digest—and respect my true wishes.

With brain tissue donation, time is at a premium.  Tissue must be donated within hours of death.  There can’t be any debate, any arguments.  It must be taken care of promptly for the donation to be of any benefit to science. There isn’t time to dig through Sunshine’s home office to read about her wishes in this instance.

So, my loved ones, here are my wishes.  I’m officially signing up with the M.S. Tissue Repository at the University of Chicago.  I’ll be sure I have my papers in order for you so they are easy to find.  You just need to notify the doctors of my wishes immediately upon my death.  No worries, I won’t suffer terrible disfiguration and my funeral won’t be delayed.  And, in addition to regular organ donation, we can rest together knowing that maybe my damaged brain and tissue could help lead to an eventual cure for M.S.

For others interested in this option, you can also choose to donate your brain tissue to:

Rocky Mountain MS Center, Research Division
701 East Hampden Avenue, Suite 420
Englewood, CO 80110
Phone: (303) 788-4030       
Web site: www.mscenter.org

Human Brain and Spinal Fluid Resource Center, Neurology Research
Building 212, Room 16 (127-A)
West Los Angeles Health Care Center
11301 Wilshire Boulevard
Los Angeles, CA 90073
Phone:               (310) 268-3536       
24-hour pager:               (310) 636-5199       
Web site: www.loni.ucla.edu/uclabrainbank

Multiple Sclerosis Tissue Repository at University of Illinois at Chicago

Shannon Hertzler, Interim Coordinator
835 South Wolcott Street, MC790
Chicago, IL 60612-7344
Phone number:  (312) 996-5763       

 

For more information on the process of brain tissue donation:  Donating to Tissue Banks, published by NMSS.

 

Jonesing for a Good, Healthy Cry

I’ve read others’ stories about their experiences with Solumedrol –the physical and emotional rivalries that take place inside the body and mind.  So many emotions; all splayed out for the world to see.  My emotions haven’t known how to splay themselves anywhere – except deep inside for longer than a week now.  Sure, I snapped a little now and again, felt frustrated, even looked and maybe sounded grumpy or angry.  But my emotions were stewing in the pit of my belly, just screaming to get out.  In fact, I began to think the feeling in my stomach that I describe as this awful ache-from-the-inside-out tummy ache was nothing more than pent up emotions looking to blow off some steam.

By Saturday afternoon, I was Jonesing for a safe-your-life sob.   I put a plan into motion.  I pulled out the old, sad memories – imagining deep sadness in my future while the hubby was out shopping for Mother’s Day.  I looked at old photos that normally would start the tears swelling.  I even re-read some of the letters I wrote to my step-children when they were little and when I was first diagnosed with cancer; letters filled with advice on how to care for their father should I have passed on at the time.  Nada.  Nothing worked.  In a moment of sheer desperation, I actually considered running my foot right into the edge of the bed, risky injury just to conjure up a little salty relief from my tear ducts.

Then, while flipping through the satellite, I found my refuge:  P.S. I Love You: a 2007, 2 ½ starred movie with a plot that was sure to satisfy.  In the flick, a husband – suffering from a terminal brain tumor – goes to great strides to prepare letters, gifts, trips, and special moments for his young wife who he knows will have a hard time transitioning her life upon his pending passing.  His gift to her, a way to help her see through the sadness, carries on for the entire first year after his death.   Thirty minutes into the movie, I was sobbing.  Another thirty and the relief started to pour out.  By the time it was over, I could barely breathe.  Until I was actually able to laugh with a little relief.

It was all out there.  All in the open.  And after a long, tiring movie, my eyes had actually swelled up to meet my water-retaining cheeks perfectly.  No more circles, no more bags.  Just pleasantly serviced tear ducts, awash in relief and relaxation and rosy, swelled cheeks jiggling up and down with each sob or laugh.  My toes wiggled with glee, too; happy they would be spared from broken bones and torn tendons, all for the sake of emotional release.

Frother’s Day

In honor of Mother’s Day, O Sole Mio Sundays is on hiatus…

Today is a special day for women all around the word; for moms, step-moms, grandmas, aunts, sisters, cousins and friends.  Today we honor our mothers.  Today I honor mine.

This has been an odd, yet amazing, year for my mother and me.  We have always been mother and daughter, but I think for decades we were searching, hoping, praying that we’d be something more – that we’d be friends, too.  There’s always been love.  There’s always been affection.  For Pete’s sake, she’s the woman who rubbed my lumpy noggin for months after birth, planted me my first tree, taught me to be a terrific party host, and gave me a love for one of things I treasure most in life – reading.  Long before “Sunshine” emerged into the picture, she was always the sparkle in the sky.  But, we were always just mom and daughter.  Connie and Kim. 

This year, our wishes (or at least mine) came true.  I found a new friend.   We get pedicures together.  We share the same cleaning gal.  We complain about our dogs (and sometimes our husbands) to each other. We call each other when we see something the other would like on QVC.  She cooks for me (and even more for the hubby).  I send her David Baldacci books to read.  We argue about politics (although I must say that’s not really a pleasant experience).  We “discuss” religion as peers and adults.  We dish the dirt. In fact, I can’t remember a single day in the last number of months where we haven’t connected by phone, or by blog, or by email at least once a day.  

When I was first diagnosed with M.S., mom was by my side daily – grocery shopping for me in the early days; driving me to work and appointments;  calling at 8:35 in the morning each time I was delayed in making a blog posting, just worried to death that a relapse had befallen me.  She’s learned to mix “are you doing OK today?” with a normal, run of the mill conversation that has nothing to do with an M.S. symptom check up.  She’s educated family and friends about my prognosis and future.  She’s worked hard to help keep me focused, centered, and strong.

Naturally, this year’s Mother’s Day is extra special for me.  I found a cute card for mom this year, referencing that she’s both a friend and a mother.  Apparently in the eyes of Hallmark, that makes her a Frother.

So, to my Frother – I love you dearly and I’m glad our dreams are finally coming true.  Together.

 

 

The Inmate’s Running the Asylum

Let’s step aside from the emotional rollercoaster of Solumedrol for a few moments to take a look at the death-drop ride instead.  I stayed home from the office yesterday, uncertain of what to expect as I began to taper from 5,000 mg. of Solumedrol over five days to just 60 mini-milligrams of Prednisone on day one.  The hubby took a day as well, to be close to the asylum. We can’t have the wacko running around at large, endangering the general public.  We both miraculously slept in until 8 am (a larger feat for him than me – apparently just being around a Solu-girl must be exhausting to those near her).  He whipped up a huge breakfast for me, to prepare the tummy for the gauntlet ahead.  We decided to ease into the day watching the previous night’s taping of “Lost.”   The poached eggs were barely half-gone and I was already itching and wiggling and toe tapping my way to lunacy.   Despite the energy level, I was completely exhausted.  Just thinking about what my day would hold wiped me out, but at the same time, I couldn’t imagine just laying on the couch resting through another television episode.  While I wanted to so badly, that would require sitting still.  Impossible.

Since I couldn’t sit up straight without my stomach aching from the inside out, and I couldn’t bend or stretch my legs due to the painful water retention throughout my thighs and around my knees, I decided it would be better to at least try to make something out of the day while feeling miserable.  I threw on a hoodie, tied up around my nose, and headed out to sit, all scrunched up on the lawn tractor in fifty degree weather.  The spring rain had turned our front yard into the Klampett’s and the hubby and I couldn’t wait another day to make a dent in our country mess.   I sat on the tractor, hunched over, feeling the wind in my face, wondering how I’d get the energy to step on the foot brake if necessary.  Then after a whirlwind of circles through three acres of glory, “Bam! The yard was done.”  Just like that.   I think the hubby was amazed.  

I literally fell off the tractor and crawled back into the house.   While showering, I actually debated foregoing conditioner, just because of the extra work.  Exhausted again.  I determined my day’s efforts had to be done and it was time to just call it a day and crawl back under the blankets.  That lasted maybe 45 minutes, just 15 minutes shy of the ending of my DVR’s- CSI episode.   Groceries needed purchased.  I needed another big breakfast for day two of the taper and we were out of eggs.   Too tired to don mascara or any form of makeup, I threw on a giant pair of sweats (to hide my water-retaining sea-cow legs that were gushing and swaying with every step) and decided to drive to the very expensive small town grocery store down the street instead of making the journey into town for less expensive, more publicly humiliating options.  The hubby, who likely was just hoping for an hour’s worth of peace, tried his hardest to assuage my worries about my appearance as I walked out the door.

Just the day before, the man had called me “Uncle Fester” when I walked in from work.  Apparently, I looked like a ghoul – white faced, with nasty black circles under my eyes, barely visible though due to the swelled cheeks that filled in to my nose.  As I prepared to fly to the grocery store, he compared me to a famous movie star, shopping without makeup and purposefully dressing down trying to hide her glamour and beauty behind her giant Foster Grants.  At least he thought I bought the compliment, but I knew exactly how bad I looked.  Who can’t find the energy to dry her hair and apply some lipstick, but has so much energy she just has to go grocery shopping while not being able to stand up straight?

Sixteen-and-a-half minutes and $150 later, the shopping was done.  Turbo shopping at its finest.  By the time I reached the check out, I knew my goose was cooked.  My back had seized up and my legs felt like an elephant’s.  In a way, I was relieved.  I just wanted the clock to wind down, to turn itself off.

The groceries unpacked, I lit a few candles, took Patrick’s advice from yesterday’s posting about quiet music, a good book, and a little tea, and curled up on the couch.  I’ve always been a quick reader.  I’ve been known to fly through a good Grisham on a single, Sunday afternoon without blinking an eye.  But yesterday evening, I broke all historic records, finishing a Nora Roberts in less than two-and-a-half hours.  I’m not sure I retained a word, but I think it was a good story.   Two different times during the day I made meals for myself.  My body was craving food wildly, but then didn’t want to welcome it in when the time came.  I washed the kitchen sink (a rarity) twice.   The entire time thinking how I was living deep in an asylum, all contained right inside my screwed up brain and body.

The hubby escaped for a few hours last evening, leaving Lab Oboe in charge of the prison. He patted the pup on his head, telling him to take good care of his Mama.  Then, ever so quietly, also gave the pup his permission to sit on me and smother me if I happened to manage to drift off at all during the evening. By 8 pm, while looking out the front window at the beautifully cut acres of land, my eye landed upon the seven yards of fresh mulch delivered onto our driveway earlier in the day.  For just a split second, I actually considered finding that hoodie again and wandering out in the dusk to lay mulch.  Then I giggled, realizing that I couldn’t do the “dip and drop, dip and drop” needed to shovel and smooth the mulch.  That would require both tummy twisting and knee bending – still not a viable option for the sea cow whose stomach doesn’t appear to be getting any better as the days wear on.  Instead, I gave in to the magic of Tylenol PM and made a huge dent cleaning out the stored up shows in the DVR.

The funny part?

Eleven days remain until parole.

Eleven more days of tapering. 

Eleven, very, long, days in the asylum.

God help us all.

 

Where’s a Straight Jacket When You Need One?

Word of the Day: Emotional Lability.  Ok, so those are two words.  Who out there is ready to argue with a gal who’d not fit for public consumption these days?   I stole the phrase: “not fit for public consumption” from Ms. Brain Cheese herself – from a prior posting about her own experiences with Solumedrol and Prednisone.  The posting hit the nail right on the head.

What exactly is emotional lability? Our good friends at Wikipedia share the following:

Labile affect or pseudobulbar affect refers to the pathological expression of laughter, crying, or smiling. It is also known as emotional lability, pathological laughter and crying, emotional incontinence, or, more recently, involuntary emotional expression disorder (IEED).^[1] Patients may find themselves laughing uncontrollably at something that is only moderately funny, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent: a patient might laugh uncontrollably when angry or frustrated, for example.

Labile affect is most commonly observed after brain injury or degeneration in amyotrophic lateral sclerosis (also known as Lou Gehrig disease), a form of motor neuron disease. It affects up to 50% of patients or up to 17,000 people, particularly those with pseudobulbar palsy.^[2]It also occurs in approximately 10% of multiple sclerosis patients^[3], signaling a degree of cognitive impairment.

While not as profoundly disabling as the physical symptoms of these diseases, labile affect can have a significant impact on individuals’ social functioning and their relationships with others. In motor neuron disease, the majority of patients are cognitively normal; however, the appearance of uncontrollable emotions is commonly associated with learning disabilities. This may lead to severe embarrassment and avoidance of social interactions for the patient, which in turn has an impact on their coping mechanisms and their careers.

Treatment for labile affect is usually pharmacological, using antidepressants such as fluoxetine, citalopram, or amitriptyline in low to moderate doses. In the USA, a combination of dextromethorphan and a subtherapeutic dose of quinidine has been submitted to the FDA for approval to treat emotional lability.^[2]

 

Apparently the labile affect is highly prominent with people on high doses of Solumedrol and/or a Prednisone taper as well.  Luckily the affect is temporary and completely curable once the steroids finally pass through the patient’s system (over a period of weeks).  The hubby has now truly experienced what it would be like living with someone with Roid-rage. It’s a good thing I’m not a card-carrying member of the World Wrestling Federation (although since the steroids have altered my voice to a husky, rasp, maybe I should call for a job interview).

 My emotions are certainly not my own.  I don’t truly “own” any part of myself right now.   For a control-freak, this is unsettling and disturbing.  I’m merely trying to be quiet, stay quiet, and stay out of the range of anyone whom I may offend with my exhausted state of hypertension and sometimes immediate and unexpected withdrawal.   People can tell I’m not myself these days, but I’d rather have folks wondering why I’m slightly withdrawn and quiet vs. watching me laugh, cry, and fret one moment after the other in public.

Luckily the hubby is a patient being, understanding that this “process” is really of no fault of my own (hint, hint – little reminder there hubby).  Hopefully other caregivers to M.S. patients realize the ramifications of a little Solumedrol drip-trip as well on their loved ones. 

Not fit for public consumption…there’s no better way to explain it!

 

And They’re Off!

I need a cool new nickname.  Don’t get me wrong, Sunshine is awesome, but it isn’t an appropriate name for a quality bred horse.  I’ve been a horse this week.  Ironically in the wake of the running of the Kentucky Derby, I’ve been running my own wild horserace for the last week.

I’ve been on a five-day course of IV Solumedrol since Sunday and it brought back “fond” memories of my first round with the drug.  It’s a valuable treatment to reduce the swelling in my brain, turning my sparkles back into spots.  But it has its downside, too.  In fact I remembered that downside and delayed having to make the call to the doc to proceed because of the side effects.  I thought I could work through the relapse on my own, but in the last minutes of sanity I made that call.

And they’re off! The horserace has been longer than the less than two mile Derby, but I don’t have a cool horse name. I ran the race nameless and invisible.  I’m writing about Solumedrol today to share my experience with the infused drug, to help others who may need to run their own race with the med in the future.  Remember, my opinions and experiences are no replacement for medical advice.

The best way I can explain the Solumedrol experience for me takes me back to my early 20’s when I was so desperate to diet that I tried every new diet pill that came on to the market.  I also drank A LOT of coffee back then.  When I tried diet remedies, coupled with the coffee, I felt nuts, shaky, queasy, like I was running in invisible circles.  I felt that way all this week with the Solumedrol high.  My hands shake so much, I can barely type.  I can’t wear my anniversary and wedding rings because my hands are swelled, as are my feet trying to squish themselves into uncooperative shoes.  Today my face is swelled to almost twice its size; the hubby was poking at my legs today, watching the wave of fluids roll through the thighs with every poke.

When I first experienced Solumedrol, I loved the energy it gave me.  Remember though, I had my first infusion before being released from an exhausting stay in the hospital where I found out I had M.S.  My final four infusions were done in the home.  I wasn’t back at work yet and I didn’t leave the house even to take a walk outside in the snow.  This time, life is going on, I’m working, teaching, and living my life with my port-a-cath in my arm by my side.  The energy feels different this time; disturbing even.

Some folks have trouble sleeping while on Solumedrol.  I try to infuse early in the morning, in order to be able to sleep at night.  I also medicate with Tylenol PM and a small dose of Clonazepam.   Sleep doesn’t seem to escape me, although by 6 AM, my eyes are bugging out of my head and I’m wide awake.

Showering is fun, too.  The hubby has to wrap my ported arm like a pork chop with Saran Wrap to keep things dry.  And this time, a vein blew in my left arm, so my port is in my right.  I’m right-handed, so everything is off a little.  My arm is all taped up so it doesn’t bend easily.  But worse, when I need to clean my line with Heparin, it’s my left hand that has to push the plunger.  Just the reverse action of trying to link the line to the drug is different this time around, with my left hand needing to take the lead.

When I try to wear long sleeves, my socked arm (it’s a cotton sheath that covers the port and hides my wires) gets unbearably hot and the sleeve puts pressure on the port.  So, I’ve been wearing short sleeves to work.  With one arm black and blue from elbow to mid-arm and the other sheathed in an arm-sock, I look like a freak.  I’ve had many questions, but have approached it all as a teaching opportunity.

I still drove while on Solumedrol, but I felt that I was hypersensitive to every movement on the road.  I speak 100 miles per hour (about six miles per hour faster than normal, tee hee) and my emotions have escalated beyond recognition.   It’s a violent, fast, and crazy horse race.  Exhausting even.

By Monday morning I felt as if my symptoms were exacerbated worse than before.  I chalked that up to the process going on in my brain, the effort to get things back to the “new normal.”  Most importantly, during my last stint with Solumedrol, I quit cold turkey.  That didn’t work for me.  By the week after my infusions stopped, my body fought back, craving the steroids.  By mid-day every day for a week, it felt as if my body was caving in on itself.  I ached uncontrollably from the inside-out and by 6 each night I was in bed unable to stay awake or function.  I was less than a week from diagnosis at that point, and scared silly thinking what I was feeling was from the M.S.  My more-intelligent-than-me hubby recognized it was from the steroids and not the M.S.

This time around, I’m wrapping up the horse race with a yoga cool down – a Prednisone taper in the form of a pill.  It’s designed to wean my body off the high dosage being infused right into my veins.  This morning was my last infusion, the port-a-cath is gone, and I begin the tapering process bright and early tomorrow.

Here’s something else I learned about Solumedrol.  Many M.S. patients hope the minute that port goes into their arm that they will feel better.  It doesn’t work that way.  Some patients report that it takes weeks after the infusions for things to feel much better.  The same held true for me the last time around.  I had serious vision issues with that particular attack and it took 2 ½ weeks for my vision to return to as normal as it’s ever going to be again.

So, I accept that while the horse race is over and the yoga has begun, that it will be a few weeks yet until I feel “better.”  That should coincide perfectly with the start of my train ride with Tysabri.   Funny, via horses and trains, I feel like I’ve traveled the world lately, but haven’t left my hometown.  I guess we call it a “journey” for a reason!

Slip of the Wrist

Picture the scene.  A professional businesswoman attends a business luncheon honoring adult and student volunteers for one of her programs.  She’s dressed in a trendy black pant suit, “workable” heels, and fashionable jewelry.  She mingles and socializes, shakes hands and shows off her business finesse.  She thinks she’s stylin’.

Lunch approaches and she prepares her plate with a mixture of pizza and salad, with a helping of meatballs for good measure.  Ever the lady, she attempts to eat her pizza with a knife and fork.  As she prepares to cut one slice, her grip (ever so weak) slips from the fork and splays the slice of pizza into the other food on her plate.  The food proceeds to fly off of her plate and onto the table between herself and the person dining across from her.  She blushes, apologizes, and cleans up the mess.

The conversation, paused momentarily, begins again.  She returns to her plate of food and once again attempts to cut her slice of pizza.  Once again, food flies, primarily the other piece of pizza on her plate.  She’s mortified.  When it happens for the third and final time, she gives up and picks up the slice and eats it with her bare hands. 

This was my luncheon experience this past Friday.  I called my husband later and told him I wished he was there to cut my food for me.   You see, we have a long tradition of others cutting Kim’s food in my family history.  From early childhood, my dad would butter my bread for me – whether at home or in restaurants, he would cut my pork chops and more importantly, my steaks.  When my dad first met my now husband, he warned the hubby that the food preparation and cutting ritual would be passed on to him.  To this day, when we dine out -whether at a classy joint or the down home restaurants that speckle our little town – the hubby continues to butter my bread for me.  Yes, he can often be seen cutting my steak for me as well.

Little did I know that this family tradition, passed on to the next generation, would become part of my future.  Little did the hubby know that he’d have to spend time teaching me again, as if I were a little child, to grip my fork and knife and cut my food appropriately.

DEA Agents — Ignore this Article!

Note to readers and to web-lurking, criminal-seeking DEA agents:  This is in no way meant to be a solicitation for prescription drugs, nor an attempt to traffic my unused meds to another M.S. patient using the Internet.  This is merely an opinion piece on the lack of a reputable system for recycling safe and unused DMD’s that cost nearly a fortune for many patients.  This disclaimer is designed to protect Sunshine from her biggest fear: false prosecution.  There’s no need for drug agents to raid my home and kick in my back door. My dear father is already worried there’s a tap on his phone line since we talk about drugs so frequently now in our conversations.  He certainly doesn’t want to share an adjacent cell. This is merely one M.S. patient’s opinion on an infuriating topic.

Do you remember when M.S. blogger Lisa Emrich asked you what $7,000 looked like to you?  That was a poignant and breath-taking piece about the cost of M.S. patients’ injectible DMD’s.  After reading that article, I became highly cognizant of the value of my meds, grateful for a terrific prescription plan, and cautious about being wasteful with a single syringe.  (Click the link above if you missed the article previously. It’s a must-read).

Last month I had a terrible reaction to Copaxone, resulting in my inability to continue use of the meds, further resulting in a brand-new box of sharps, along with five extra days’ worth of the meds, taking up semi-permanent residence on the top shelf of my fridge.  Sunday I began a five day regimen of Solumedrol, and my refrigerated food items are planning a mutiny for space.  I just can’t bring myself to throw out meds, which without insurance would have cost me well over $1,700.  The new prescription came the day before my attack. 

Shared Solutions won’t take them back.  Either will my mail-order pharmacy.  My neurologist shook her head at me and also saved me a phone call to the M.S. Society, who also can’t do anything with them.  I’m not comfortable wildly posting “have medicine, will donate” on the Internet.  I wouldn’t give my meds to just anyone.  I did offer the box to another Copaxone user whom I’ve gotten to know a little, but the good soul, also blessed with a good prescription plan told me to find a needier patient.  I even called a local free clinic, but alas, they too are unable to receive donated Copaxone.

I understand the worries.  I could be a psycho (no comments from the peanut gallery) and I could have tampered with the sharps.  I haven’t.  Dear Lord, I can’t even bring myself to throw them out; I certainly wouldn’t waste them or purposely harm another person.  But I understand.  However, that’s not an excuse.

It would be different if I was the only patient on the planet with this problem.  If you’ve never lurked in an M.S. networking site (Patients Like Me, M.S. World, Daily Strength, for example), perhaps you think this is a rare occurrence, but it isn’t.  People are constantly having to switch their DMD’s – for a variety of reasons.  So many people (and their refrigerators) are in the same boat as me.  Like me, they too have been told to “just throw them out.”  Would you throw out a $1,700 perfectly fine laptop just because you couldn’t use it anymore? Would you junk a perfectly fine used car worth $1,700, just because you needed a change?  Would you take $1,700 cash, wrap it up and seal it with duct tape, and just toss it into the garbage on pick up day?  This is exactly what we are being asked to do.

Why hasn’t a system for DMD return or donation been established?  Why haven’t policies and procedure been established to safe guard the integrity of the meds or to test for tampering?  Telling folks to “just throw out” their meds is certainly not the best answer.  There must be a better solution.

Perhaps I’ve missed one along the way.  If a reputable system for donating unused medications exists, please educate me.  Needy M.S. patients, it will do you no good to post your contact info here on the blog or to email me with your mailing address.  If I don’t know you personally, I can’t send you my Copaxone.  Instead, let’s use this forum to brainstorm solutions to this growing problem.  I’m up for ideas. 

Note to sexy DEA agents, carrying handcuffs: If you’re cute and rival some of the hunky cops on my favorite law shows, you can pay me a visit.  You won’t be able to cuff me due to my port-a-cath in one arm,  and my bruised other forearm from a blown vein.  But, if you’re wearing a big badge and want to waste your time with a wired-on-Solumedrol and feisty redhead with a thing for hot cops, I’ll open the door so you don’t have to kick it down.  Otherwise, if you’re just an average run of the mill agent, move on to your next Internet trap for a true drug criminal.  I promise you he doesn’t live in my father’s house either.  (Unless trafficking blood pressure meds and arthritis remedies are hot on the drug market these days). And, dear hubby, no need for scolding here, since you announced to the world last week that you dream of camping in the mountains with Shania.

Seriously – educate me and/or start the conversation towards a solution my friends….

Unanswered Prayers on Cinco de Mayo

Country crooner Garth Brooks sings a beautiful song called “Unanswered Prayers.”  I heard it the other day, turned it up loudly while driving home on the highway in a downpour, and I grinned ear-to-ear as I thought of all the wonderful unanswered prayers for which I am grateful.   In the “old” days, I admittedly prayed for all the wrong things, often praying for material objects or experiences.  I prayed for things for myself. Funny, in retrospect, I think I only really prayed (a) when I needed something and (b) when I occasionally wanted to say “thanks” for an answered prayer.  When something scary happened in my life that affected another, of course, I prayed for that individual or their family.  But, selfishly, I so often prayed inappropriately.  Worse, there were times I was actually angry when my prayers weren’t answered.  I don’t think I ever prayed to just say “thanks” for no particular reason, or to acknowledge that it was up to the Lord to decide what was best for me.  It still never ceases to amaze me how clearly I’m able to see things now that my eyes are opened, although it’s still difficult and often embarrassing to acknowledge my poor past behavior.

The first time I heard this song was years ago.  The concept of unanswered prayers helped me see things a little more clearly.  If my God knows what’s best for me, then he would know which prayers to grant, no?  I’ll never forget hearing a particular story about my friend Cathy, who is now closing in on one year of her battle against Glioblastoma.   She visited a local chapel in the days before moving to Cleveland to begin months and months of treatments and surgeries at the Cleveland Clinic.  She told a shared friend that she wasn’t really praying for a miracle in the chapel.  When she left the chapel, she was calm and serene, and acknowledged that the calmness of spirit may indeed have been the miracle she didn’t know she was looking for.  God answered her prayers in a way that perhaps only He knew would be best.

If you have been following my story since right after my diagnosis, you may recall that the hubby and I made the decision back in December to cancel our travel plans for Cancun this May.  We were planning to travel back to Mexico, to the resort of our dreams to celebrate Cinco de Mayo and my impending 40^th birthday, with a group of friends.  After my diagnosis, we were concerned about the hot, tropical temperatures so close the equator, and cancelled our plans.  We were disappointed and so were others.  I was a little angry, too, truth be told. Realistically, I agreed with our joint decision to wait at least one year from diagnosis to travel into hot temperatures; no need to force the hand of fate and end up with a relapse or exacerbations from elevated body temps that are almost unavoidable in 100% sunshine.

Ironically, I have spent the last few weeks battling a relapse of sorts, and on Sunday, my home nurse visited once again to start my Solumedrol drip for me.  The IV steroids should help take the edge off of my symptoms that are a result of my inflamed lesions.  I thought I could go it on my own, but by week three of daily disruptions from complete numbness, facial tremors, neuropathic burning in my forehead and legs, and a variety of other doo-dads, I gave in to the power of five days of Solumedrol.  

Today is Cinco de Mayo, and we should have been in Cancun.  I would have been miserable, the hubby would have been living vicariously through my misery, and our friends would still have been disappointed.  I would have boarded a plane, already fully symptomatic, “what-iffing” myself to death the whole trip there.  I mentioned this to the hubby and he responded with our usual refrain these days: “Everything happens for a reason.”  I guess we made a good decision all those months ago when I was just certain I’d never have a relapse within the first year. Naïve Sunshine, isn’t she?  Yet another example of unanswered prayers at work for our own benefit.

Sometimes I thank God for unanswered prayers
Remember when you’re talkin’ to the man upstairs
That just because he doesn’t answer doesn’t mean he don’t care
Some of gods greatest gifts are unanswered prayers.

O Sole Mio — The Sunberg’s Story

O Sole Mio Sundays – the Sunberg’s Story

Most Sundays, I devote my blog to the stories of others who let their Moonlight times inspire them to let the positive blossom from the negative.  Months ago I told you all about little Jack – Jack Sunberg.  He’s a very young boy, in the battle of his life, fighting an inoperable brain tumor.  Today I’d like you to take some time meeting little Jack’s parents – Megan and Craig. Jack’s parents are members of my public broadcasting station and in an effort to help other parents of young children with cancer have been openly sharing Jack’s story.  They are amazing people, who when I was first diagnosed, took time out of their lives to pray for me and my family.  Take some time on this Spring Sunday to read about the Sunberg’s. 

Family fights on
3-year-old boy battles inoperable brain tumor

Interested in submitting a story for O Sole Mio Sundays? What are the rules? There really aren’t any. I don’t care if your story is long or short. It doesn’t matter what your Moonlight situation was — whether M.S.- related or something else. Submit your stories to me and I’ll post them here. A lot of folks read this blog, so please let me know if you’d like your email address included with your story. Send along a photo if you’d like and I’ll post it, too. The only request I have is that you make a connection for my readers, explaining how your Moonlight inspired you. Describe the opportunities and the gifts you received from your Moonlight times and find a positive side to your story. Not everyone likes to talk about themselves, so if you have story about a loved one, a friend, someone who inspired you, send me their stories, too. As you can tell, we also take recommendations of nationally-published news stories that follow the themes portrayed here on Sunshine and Moonlight. Please submit appropriate links and citations when necessary. Click here to send Kim YOUR story! And, then be sure to visit Sunshine and Moonlight each Sunday for Ole Sole Mio Sundays!