Time To Call The Plumber!

Okay, there's no getting through this without grace, humility, and lots of humor... 
So it was time to put on my big girl panties and call the plumber.

Going back about fourteen months, I began to notice a sense of urgency. At the time we were still playing "What's My Disease?" and for the moment, I was being treated for Lyme's Disease, with a daily regimen of self administered antibiotics via a central pic line in my arm. I was told the medication was strong and it could have side effects, so just in case, I mentioned my symptoms to the nurse, on my weekly visit;
we ran some tests but nothing turned up.

Months passed and we had a name for my disease, but I was told it spared the plumbing so I occasionally requested another test, but to no avail. This pattern continued for a few more months, until I decided to ask my gynecologist on my annual visit. She asked a few questions, drew me a rough sketch of the female parts while providing something of an anatomy lesson, using phrases like "This is where the pee is, and this is where the poop is...". 

Seriously, I can't manufacture fodder this entertaining; perhaps I appeared to have arrived via the short bus, in any case it was amusing, she ordered more tests and referred me to someone better equipped to help me with my problem, the plumber.

Apparently, plumbers of human pipes are as busy as the regular ones, so I was offered the first available appointment some six weeks later, and my problem continued to worsen. My legs were progressively becoming harder to move and my bladder, harder to control; this was heading in a bad direction.

Finally, the day came and I was filled with hope that relief from this socially unacceptable behavior was within reach. The doctor looked a bit like Christina Yang on Grey's Anatomy, and projected a much kinder disposition; the combination was both comforting and reassuring in odd way, as I lay exposed for examination. She poked around in much the same fashion as her predessor with a new twist...    

A Kegel? Sure, I know what that is... Oh, you want me to do some now? Of course, I can do that. Yes... I know it's not a leg exercise, let me try again. Sheesh! I'm glad we cleared that up...

She described a few different ways bladder issues can present in patients, some of the likely causes and respective treatments, none for which I felt any particular kinship.  And most certainly not the one where she surgically creates some kind of flap to support a worn out muscle, I'll do Kegels from sun up to sun down to avoid attending that surgical event!

So, she explained, we will start with some medication and see how that works, and if that doesn't help, there are some additional tests we can set up. One is a flow test and the other is a Urodynamic study, but let's wait on the Big Fancy test; we won't do that if the medication works.

The nurse came in to follow up with the RX, provide paperwork that describes the two tests that would be possible next steps, along with my homework assignment a Void Diary. That was a clever name for a journal to record every ounce of intake and output including any spillage along the way...

So now I had to document the whole embarrassing ordeal, and return with my shameful diary, but it didn't end there!

Stay tuned for the next episode when we explore The Big Fancy Test!

I Believe...

Have you ever noticed the power Santa garners this time of the year? If you are a parent of young children, I’m pretty sure you do… and I’m guessing you too, have used it to your advantage.

It seems that magically around Thanksgiving, when all of the stores begin to look like Santa’s workshop, children are much more aware of their behavior; they become unusually attentive, obedient and even more affectionate, generously  tossing “I love you Momma” the way they used to toss Cheerios off the tray on their high chairs!

If you haven’t seen this change, you have not done your part to foster the myth. Try playing your favorite version of "Santa Claus Is Comin' To Town" and be sure to sing along loudly. Better yet, encourage them to sing with you, and teach them the lyrics. It seems regardless of age, these clever little humans, have the cognitive power to grasp the concept and then…you’ve got them right where you want them! Once mastered, it’s nearly blissful from mid November through December!

Now, if for some reason this is not working, and assuming you’ve done your part, technology can help you. There’s a website where you can create a personalized video, and send it to your child from Santa. Speaking from experience this works like a charm! Google PNP (Portable North Pole) Santa and get working on it right away, it’s already December 7^th after all, and you don’t have much time left!

By now you’re thinking …Where is she going with this, and how does it relate to ALS? Well…while thinking about this phenomenon the past few days, and seeing tangible results, my mind wandered off to the premise, that we are all children of God, and much like we teach our children about Santa: He sees you when you're sleeping, He knows when you're awake, He knows if you've been bad or good, So be good for goodness sake… as the lyric goes, many of us are also brought up with the concept that God, is all knowing and omnipotent, and one day we will all be accountable for our actions; for some of us… that day will come sooner rather than later.

So, the question is, has that belief impacted my behavior?  Sadly, no…I cannot say that knowing this has always influenced my actions, and I can’t even say that since learning of my diagnosis, and the inevitable prognosis, I have significantly changed for the better, but my priorities have changed…

December 10, 2010, the morning following news of my diagnosis, I was lying in bed after spending most of the night sleepless, weeping in my husband’s arms, and the phone rang. It was early, but looking at the caller ID, I could see it was a close friend, who knew I would likely be awake, and I was pretty sure she was checking to see how the doctor’s appointment went the previous afternoon, so I picked it up.

I’m not sure of what I said, or how she could even understand me with all of the waterworks going on, but I do remember something she shared with me, that helped shape my outlook as the dust settled in the months to follow… thank you my friend.

She told me that Elizabeth Edwards had died just a few days before, on December 7^th 2010, and she read me an excerpt from this statement on her Facebook page, the day before she passed. I have included the full text below and bolded the excerpt.

You all know that I have been sustained throughout my life by three saving graces -- my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And, yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel to everyone who has and continues to support and inspire me every day. To you I simply say: you know.

With love,

Elizabeth

December 6, 2010

Chapel Hill, North Carolina

Oddly, she died one year ago today as I am writing this, and the excerpt is really all that I can remember from that phone call, but the text is rich with wisdom that has carried me through the past twelve months. 

We all know that eventually we will pass, and for those of us who believe in God, we know He’s watching, and there will be accountability, but we also know that we are human and fallible and we are forgiven.

So, while I know my time here will end sooner than I had anticipated, I take comfort in the opportunity to spend my remaining time finding ways to savor the moments, to leave nothing unsaid, and love without limits…because in the end, that’s all that really matters, and having this time is a blessing because... I believe.

Thanksgiving...

First, I feel that I must preface this post with an explanation, as I am getting phone calls, e-mails and general inquiries, about my condition. Since we have had a bit of a cold snap, and my allergy trauma should be toned down by now, it seems that the closest of friends are beginning to wonder if I might actually be slacking off at this point... fair enough! 

Thank you for your concern, I am getting some relief from the allergy attacks and I have backed off the allergy meds to clear my head. So I am somewhat functional at this point. However, the title for this post, Thanksgiving, should give you some indication of just how long ago I began working on it. 

So... clearly I am late to the party, but lets just embrace the fact that I've shown up at all and move on to the topic at hand because it is already December, and I am going to end up distracted with my holiday shopping if I sit at this PC much longer. (Yes, self diagnosed A.D.D. too...I'm a real prize!)

When I began this post, I really did have Thanksgiving in mind, but as you read it, you may detect the places where interruptions demanded I attend to something else and well... upon my return, my original train derailed and I ended up on a different track altogether.     In the end, I may have gotten to a different place, but it must have been where I needed to go. After all this is mostly therapeutic for me, and you are along for the ride... 

End of preface.

There are so many things to be thankful for as I reflect on the expanse in my rear view...   I have always had all that I needed and then some... and as I grew older and more socially aware, I realized that many of us live in unbelievable excess, while others live in extreme poverty. This concern especially breaks my heart when I see how poverty affects children, so for some time now I have committed time and resources to organizations focused on this issue.

While I have had this awareness of excess for several years now, and made some changes in my behavior, if I take an honest inventory, I would have to admit that in my lifetime, I have accumulated much more stuff than I could possibly ever need. One could easily point to my collection of shoes as empirical evidence of my excessive consumerism. Mind you, that while I am not asking you to let me off the hook, I am not alone in this sin, many of you are right beside me and you know who you are...

This issue of excess vs. the under resourced, was even more apparent to me after I became sick. In the initial months following my diagnosis, I became obsessed with concern for what to do with all my stuff!  I know how crazy that sounds but it became a pressing issue in my mind, and while the average prognosis gave me 2-5 years to deal with this, my dysfunctional coping mechanism wanted it addressed immediately, if not sooner!

I began to lose weight, so I had a lot of clothes that didn't fit, and months before I had to give up wearing heels, so there were dozens and dozens of pairs of shoes, sandals, and boots, I could no longer wear, and that was just the tip of the iceberg...There are accessories too and what about my bike, skates, skis, and eventually my car? You can't take it with you, and I was obsessed with giving it away! "It" being anything I could no longer use.

What was it that drove me to this urgent need to dispense of these material possessions? I remember thinking that I needed to give these things to people who needed them now, and not wait for the time to come when my family would be burdened with the task of going through all of it. I've been there before and it's draining both physically and emotionally, I could spare them some of that...

What I was not prepared for was the impact the task itself would have on me. Standing in my closet holding onto a rack for balance with one hand, and grabbing clothing with the other, I struggled physically to maneuver as I filled the bags. And then without warning, my eyes flooded with tears and pain came from so deep in my gut that my mouth hung open, and I could hardly breathe. It wasn't a reluctance to part with my things, it was grief, plain and simple. 

This exercise was about letting go... giving up those things that were a part of the life I had, and transitioning to the next chapter. I wasn't going back, my legs weren't going to magically start working again, and this was the reality that sent me into hysterics.

I have yet to complete this task, I take it in small bites, because grief is a sneaky little devil, and it hides out waiting for its next opportunity to attack...

and I still have plenty for which to be thankful. 

I'm no Slacker...

It's been a rough week or so, and I have to admit I just haven't had the energy to write... But I would hate for any of you to think I was just slacking off so I'm going to  try to fill you in between naps.

On top of my every day physical challenges with ALS, I've been in the throws of my semi annual allergy attack which involves: head congestion, sinus pressure, a nose that runs like a leaky faucet, a choking cough driven largely by a post-nasal drip, and a case of what my doctor refers to as Eustachian Tube Dysfunction (ETD). Yet another incurable disorder I managed to score in the gene pool, that will often cause me to stick my fingers in my ears at what might seem to be an inappropriate moment. 

In short my head feels like a lead ballon and every orifice within it is clogged in some fashion. My former co-workers can attest to witnessing this event in the Spring and Fall of every year; it is most notably recognized by the choking cough that is about as pleasant to listen to as nails on a chalkboard. I assure you, it is as annoying for the chokee, as it is for those unfortunate enough to be in earshot.

Now, there are some OTC and Rx options, that can help manage the symptoms until a lasting frost kills off the allergens but these remedies often zap me into another stratosphere. 

Pre-ALS, taking these medications often made me loopy but I remained somewhat functional, meaning I could take them after I arrived at work, as to avoid operating heavy machinery while drug induced, and get through the day fairly well. I would likely be more amusing than usual under these conditions, and the worst thing I can remember happening, was when I accidentally headed into the men's room instead of the ladies room. No worries, I caught myself in time...

Post ALS, the combination of my regular medications and those that help manage my allergies simply knock me out. I find myself falling asleep while sitting at my PC, waking only to realize two hours have essentially evaporated.
 
I'm usually up early but since there's no school this week, I took the liberty of sleeping in the past few days to try to get some extra rest. I wake surrounded by small creatures trapping me beneath the covers: Crabby the kitty sleeps off my left shoulder, Nik, a larger kitty is planted directly on my chest, and to my right competing for space, lay Maddie, my adorable eight year old with Blue, our jealous Border Collie mix, sprawled across her tiny body to rest his head on my right shoulder. 

Nik and Blue take turns licking my face, and Nik sneaks an occasional nip on my nose, until I pull one of my otherwise pinned arms, out from under the covers and give in to petting them. And so another day begins...by the time I get up, shower, dress and take my meds, I'm about two hours away from a nap...

So much as cold temperatures are not my preference, I would be pleased with a nice frost to put an end to current unproductive schedule.

Uncommon People...

Twelve years ago this month, I began working at a family owned business in the height of their busiest time of the year, the holiday season. The atmosphere was a bit crazed at the time, since they had just gone live with their new ERP system and well…the organization was reeling from strong growth and adapting to both organizational and functional changes. I wasn’t sure about what I stepped into at the time but I soon realize how fortunate I was…This was no ordinary workplace, and these were not ordinary people.

Over the years, I was blessed to have the opportunity to grow and learn through challenging assignments, and the rewarding experience of encouraging others to achieve their potential. I worked with a team of people who were capable, responsible, and resourceful, and they had a unique talent for using humor to diffuse stress. I also had the privilege of developing lasting friendships, and getting to know the people I worked with and their families.

The business was a good combination of large enough to provide challenge and growth, yet small enough for everyone to be known for their strengths and contributions. It was not unusual for the Owner or CEO to greet staff members by name while passing them in the hallways. It had the feel of being home to me for many years. This in of itself made it difficult to accept the fact that the progression of my disease would eventually force me to give it up much sooner than I wanted.

While the physical changes were gradual, it did become apparent that something was wrong by the end of 2010, and although my co-workers didn’t pry, they began to show concern, and offer assistance when I needed it. Those closest to me knew of our pursuit to figure out what was causing these changes in my physical condition, and when we confirmed the diagnosis, the word began to get out.

I will never find words to accurately describe the overwhelming support and caring I experienced in this organization, from the Owner, CEO, and Executive Team, to those in my group, and others, outside of my group, with whom I rarely worked. They were kind and generous beyond any expectation. One incredibly bighearted individual provided a scooter that made it safer for me to get around in the building, co-workers held doors, waited patiently for me to pass, and smiled or joked with me to normalize what could otherwise be awkward.

They sent personal notes, cards, and thoughtful gifts, offered prayers, made meals for us, took me to lunch and even doctor’s appointments. One special family drove out of their way to take me to and from work for eight months, often treating me to a Starbuck’s venti black coffee on the drive in. They carried my bags, my lunch, my walker, and let me grab onto them, as I moved slowly to get in and out of the building.

When we formed a team to participate in the walk for ALS, they mobilized a fund raising effort that collected thousands of dollars in donations to support ALS patients and their families, most of which came from their own pockets. They additionally provided donations for any equipment I might personally need.

This is no ordinary company, and these are not ordinary people; they have been my family for a long time, and this is only one example of how they take care of their own.

I can identify with what Lou Gehrig was feeling when he gave his Luckiest Man on the Face of the Earth speech at Yankee Stadium, because for the last twelve years, it has been an honor to work with such a fine group of people and for that I am truly grateful.

My Tables Manners are Appalling!

I’d like to apologize to those of you who have had to sit through a meal with me recently. While I am still the proud owner of a copy of Tiffany’s Table Manners for Teenagers, had you the experience of watching me try to employ the use of common utensils,  such as a fork, spoon, or heaven forbid, a knife, you would think I was raised by a pack of wolves.

 I realize it doesn’t help dispel the allegation, when I try to pry the cap off the bottled water with my teeth, but the rubber band trick I was using no longer works for me. It seems that between the loss of fine motor skills and muscle tone, even a spoon is not safe in my hands, and most foods simply do not defy gravity long enough, to stay on the utensil until reaches my mouth. Luckily some gets in, but the rest either falls on my plate, the newly laundered tablecloth, the napkin in my lap, or if Blue is really lucky it goes straight to the floor.

This ongoing struggle has played out in several ways: it takes me a really long time to eat; I am usually tired and still hungry by the time I give up. Chris will sometimes cut my food for me, which is thoughtful at home, but could become embarrassing if we start to do it in public.  Blue eagerly awaits  his  just rewards during dinner, and on a happy note I weigh less than what’s printed on my driver’s license, and how many of us can honestly say that?

I bring this up because… well, now that it’s November, and the holiday season will soon be upon us, some of you may want to take this into consideration before adding me to your guest list for a holiday gathering. Or, if you are willing to take the chance, be prepared to find me a dimly lit place, away from your nice china and throw me some finger foods.

Don’t worry if it’s a more formal setting, I can still remember to discreetly check my hands under the table so I don’t mistakenly use the wrong bread plate or water glass… 

I’ve lost control of motor functions, not my good sense.

God is Always Working Upstream…

I don’t remember the first time I heard this phrase, I suppose it was at a time in my life when things weren’t quite going the way I wanted, and someone gently tossed it out in hopes that I could grab onto it and believe that it was all for the best. While at the time, I doubt it felt like anything more than a Band-aid on a gushing open wound, it was recorded somewhere in my psyche, so one day it could be summoned after the bleeding ceased. Many years later, I stand firmly on this belief.

It has also been said, that if you stand too close to a mural, you can only see splashes of color, but as you distance yourself from it, the image comes into focus; herein lays the problem.  We make our decisions based on our particular perspective at any given moment in time, without the benefit of knowing what’s ahead of us, as Julia Sweeney says, we make plans and God says Ha!  

So it seems, that even as a self proclaimed pragmatist, I’ve taken some wrong turns, and made some poor choices; I’ve also had my fair share of events outside of my control, wreak havoc in my life. But with distance, and reflection, I began to see the safety nets, which were carefully placed around me, before I ever realized I needed them… and how some of these events shaped the woman I’ve become.

Therefore, had I not had the experience of losing my mom, my younger brother, and my dad, each independently before I reached the age of thirty, I might not have realized how fragile life is, and I might not have pushed myself so hard, and I might not have taken the risks that made my life so rich.

I met my husband, Chris about a year before my first symptoms appeared, and we were married just shy of 6 months before my diagnosis. Who could have ever imagined that our commitment for better or for worse, in sickness and in health, would be tested so soon? 

These days I tend to dwell in Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”, because I can see the foundation of support around me, and I can trust that He is still ahead of me preparing the way... Chris standing beside me is all the proof I need.

Love and Other Drugs

Shortly after learning that the Neurology Team at the Mayo Clinic could not find any evidence contrary to our original diagnosis, we decided to take a break from reality and head for the local movie theater.  We needed to stay another night for the appointments scheduled the next day before we could travel home, so it seemed like a good distraction.

We looked at the listings on my Blackberry and remembered we had seen a trailer for a romantic comedy called Love and Other Drugs, with Anne Hathaway and Jake Gyllenhaal, and decided it was just what we needed to escape for a short time.

Ironically, when we originally saw the trailer, we must have missed the part that set you up for the underlying story line in which Maggie, the lead character played by Anne Hathaway, was struggling with the early stages of Parkinson's disease.  

I'm certain that for a typical couple it was an entertaining film. It could undoubtedly be classified as a chick flick, but the men in the audience were treated to seeing plenty of Anne Hathaway, while the women were likely agonizing over the sad love story. Nonetheless for us, in the midst of dealing with our own situation, this was anything but an escape from our reality.

In the end Jamie, played by Jake Gyllenhaal decides that Parkinson’s Disease or not, he loved Maggie and he wasn't going to walk away… we held each other and wept through the movie.

Nearly a year later, I can tell you that this disease has not torn us apart, if anything, I believe it has made us closer, and our commitment stronger. That’s not to say it doesn’t challenge us most days, it does... but with humor, grace, and love, my husband, Chris, gets me through each day…

Angels in our midst...

It's easy to see blessings when you set your mind to the positive, and so I've been taking time to identify and acknowledge these in a daily gratitude journal. Sometimes the entries are simple things like an unexpected note, a phone call or visit from a friend or family member, and sometimes they are entries about the people I would have never met if not for my illness.

Strangers who demonstrated: kindness, compassion, hope and encouragement, just when I needed it most. Although, I may only name a few here, know that there have been many in the past year and as each day passes more of them appear along the way.

Dearest Pauline, you are filled with light and healing energy and through you I have gained peace, and the capacity to be gentle with myself. Thank you for your guidance and healing.

Holly, thank you for permission to allow myself to grieve and fall to pieces, when everyone around me always expects me to be strong, including the worst offender, me... Thank you for the encouragement to journal and embrace the journey.

Robert, I feel so fortunate that you did not see my disease as an obstacle to healing my shoulder. The pain began in January and by September when you came to help me, it was frozen and immobile. I thought I would never regain the strength or range of motion to use my arm again.You gave me hope, encouragement and the will to fight through the pain.

It's sad to say but when you have ALS, most of the medical professionals you encounter are focused on educating you on the progression of the disease, and helping you prepare for what's to come as you digress. It's rare to find someone who encourages you to fight! Thank you Robert for your positive spirit and faith in me.

Laurie, from the day we met, I felt as if I'd known you for years. Thank you for your visits, and listening as I babble endlessly... Your practical insights help me stay on track.

And....Joe, the neighbor just down the street, who may have never come by to meet us if he did not recognize that we shared the same challenging disease. Thank you for checking on me this week and bringing me hope in the form of new research information you gathered at a recent ALS seminar I could not attend.

To all of the Angels in our midst, it's likely that our paths would not have crossed if not for my situation, but my life has been impacted by your presence, my faith made stronger, and my heart has been touched, and for that I am truly grateful...

The Domino Effect...

There is no cure for ALS yet, but there are medications your doctor can prescribe for the symptoms, for me it's been anti-inflammatory drugs to reduce pain, and muscle relaxers to try to relieve some of the spasticity.  Most of these medications come with their own set of adverse side effects. No worries though, they can also prescribe medication for the side effects...And so begins the domino affect, but where does it end?


Before you know it your head is spinning and it takes an hour once a week just to fill those tiny compartments in your day of the week pill organizer!  Oh yes, you'll need one of those; try to avoid the ones that look like a mid-size tackle box. They have the am, mid-day, evening, and bedtime compartments for each day; helpful to those who need to take different medications multiple times a day. 


However, I would suggest you exercise caution. If you would consider yourself to be someone akin to Felix Unger, it's tempting to get the tackle box and be that organized, but wait until you need to get those tiny pills out of the mid-day Wednesday slot!  Not so easy with the loss of fine motor skills in your fingers.

I recommend the single compartment, day of the week organizer with the locking lids. Get more than one if you need an am, pm etc. You can just open the lid for Wednesday, and pour those little buggers into your hand or a dixie cup. 


If you're more of an Oscar Madison type, with any luck you're married to a Felix type and it's already been taken care of for you... and it's color coded, not that you care... but try to make it seem like you do.


All that said...you really need to decide for yourself how you want to handle all the prescriptions they hand you before it gets out of control. It's sort of like doing a cost benefit analysis, only you have to weigh the benefit against the discomfort, and you have choices.


In my experience, some muscle relaxers can cause some of the necessary muscles to lose control, not so good if it affects the plumbing. Now, they can fix that with another medication, but this one could cause a backup on the other end, so you'll want to give it some serious consideration.


Or you can take the one that causes acid reflux but Pepcid Complete should take care of that, and if not, we can get you a prescription for Nexium, the little purple pill, you've likely seen the commercial for that one.


There is another option, but it can cause your legs to feel rubbery and unstable, so start with a smaller dosage and increase gradually. So you give it a try and okay, things are going well, no rubber legs but... well, if you admit that you're feeling a little sad and you find yourself crying over the silly things like, feeling pressured to decide what to have for dinner, that statement will earn you a prescription for an antidepressant faster than you can say Zoloft! 

No thanks, my pill organizer is full.
There's no room for Zoloft.
You've got to draw the line somewhere...

Holding out Hope...

It was late December 2010, Christmas was only five days away, and we found ourselves sitting in a tiny room at the Mayo Clinic in Rochester, Minnesota under 38 inches of reported snowfall, getting a second opinion...holding out hope that the young neurologist we saw at home, was wrong about the diagnosis.

I prayed over and over on the long drive out, that God would intervene and we would get better news. Upon arrival at the exit for Rochester, I saw a rainbow in the sky and wanted to believe it was a sign of hope.

After all, the doctor couldn't be more than twelve; he must have missed something...   I was served a death sentence, and I wasn't going to accept it from someone who had the ringtone on his iPhone configured to quack like a duck. Funny, yes... and being the geek that I am, I could appreciate the humor, but also being a child of the sixties,   I needed someone like Marcus Welby M.D. to check things out.

This was the face of a man I could trust!

The Mayo Clinic is an amazing place, within minutes of our initial meeting we had a four day schedule of appointments with specialist and tests to be performed. This included: the collecting all of the compulsory body fluids for testing, a pulmonary test, another spinal tap and another EMG! 

Bravo to the delightful woman who performed the spinal tap without consequence. She stood less than five feet tall and likely weighed in at less than 100 lbs. She spent a few minutes introducing herself, and explaining what she was going to do as I would lay on my side, facing the wall. No need to remove my clothing or even my shoes, she simply said it works best when we just chat during the procedure. So we talked about our kids, as moms often do, and in a small exam room, without a fancy gravity table, x-ray machine or team of medical professionals, she got the job done! Never under estimate the gentle finesse of a woman.

The EMG however, was equally as painful as the first one, but necessary I suppose, and the pulmonary tests were interesting. I had a cast from a broken wrist that reached up my arm nearly to my shoulder making it difficult to use the arm for anything, so they had to call in a lip holder to assist in the testing. This was a tad awkward for both the designated lip holder and me; it's best you don't try to visualize it.

Organized, efficient and thorough, the Mayo team reached a conclusion in three days that had taken our doctors at home the better part of the last nine months to determine. Unfortunately, our Doogie Howser was right, and after we met with the specialist who delivered the confirmation, we sat with a nurse who was charged with the task of educating us on what to be prepared for as the disease progressed, clearly not the fun part of her day.

I remember taking some notes with my pad and pen, hardly legible as my tears were hitting the page, making the ink run. I'm sure I still have those notes, and the folder filled with resource information that would lay untouched for months after we returned home. It was only a couple of weeks since the first diagnosis and the confirmation stung, throwing us both back into a state of shock.

We had the answers we had come for but it was a long, quiet drive home...

Back to the Drawing Board...

Okay, so it's not Lyme's disease, but I learned a new skill, I could inject antibiotics into a central line... and who knows when that may come in handy?

We met with the neurologist again, and he explained that he had some ideas about what was going on, but he would need to perform one more test to confirm his suspicions. He could perform the test himself, in his office.

So on December 9, 2010 we returned to his office for an EMG, short for Electromyogram. After careful consideration, I can report without hesitation, that an EMG is even more painful than a Spinal Tap, save the week long aftermath. This uncomfortable procedure involves placing electrodes in several strategic locations on your body: arms, legs, feet, and spine, while the doctor performs tests to evaluate the health of your nerves and muscles.

He begins with something called a Nerve Conduction Study, in which he measures nerve function by stimulating them with small electric shocks, not too bad, similar to the Evoked Potentials testing, only more extensive, but it doesn't end there...

In part two, he inserts a needle equipped with a microscopic electrode into your muscles, and as if that's not painful enough, he moves it around while you flex the muscle being tested. Did I say "OUCH"? When he stuck the needle in my back, my body jumped so high it left the table! For Pete's Sake...what did I do to deserve this kind of torture? Okay, I did accidentally kill my brother's gerbil when I was eleven, but he bit me; and it was not intentional; it was self defense!

When it was over and the doctor left the room, I could see by the look on my husband's face that it was just as painful to watch, as it was to actually be the pin cushion. I dressed and we waited for the doctor to return with his diagnosis.

It was surreal, like a scene from one of those medical TV shows you've watched. I could see his lips moving but the words hung in the air as if I could just refuse to accept them into my reality. ALS meant nothing to me...Lou Gehrig's disease? He was a baseball player, he died, but that was a long time ago... Two to five years... Seriously? I looked over at my husband and saw his eyes filled with tears but I held out, surely this can't be right...

Germbusters...

We were referred to Germbusters, a catchy name for the practice, and the doctor was known to be a Lyme's Disease Specialist, born, raised and educated on the east coast where the disease was first discovered.

He was a pleasant fellow, happy to meet another transplant, and we bonded as we shared commonalities reaching as far back as our grandparents coming from nearby towns in Italy. He took my history including where I was born, lived, and traveled over my 40 plus years. While the tests were not 100% conclusive, he was fairly certain that my east coast upbringing, and ongoing trips back to the homeland, qualified me for the likelihood that one of those nasty little ticks had at some point gotten to me.

Fortunately, Lyme's Disease was treatable if caught early, but there was no telling how long ago the alleged  interlude might have occurred, and left untreated the bacteria had the potential to cause all kinds of neurological problems.

He was confident in his ability to kill the little spirochetes, and described his aggressive treatment plan that included inserting a central line through a vein in your arm straight into your heart, to pump the antibiotic into your bloodstream daily for six weeks. There was no time to waste, and while he did not promise that I would return to normal after the treatment, he could prevent further damage by annihilating them.

So, okay...I have Lyme's Disease, that's not too bad, and back to the hospital we go to have a central line installed. Interesting procedure, not for the squeamish, but it was over quickly, and it wasn't too painful. Next, were off to the clinic to learn how to administer the drug myself once a day. The nurse in the infusion clinic patiently showed me the six steps to be followed precisely to ensure I would not develop an infection. I would return to see her weekly and she would give me the week's allotment of medication, check the port and take blood for testing.

This wasn't too bad, I had to repeat the process the same time each day, so I did it at lunch time. This did occasionally throw people who walked into my office during the 30 minute event, if they weren't aware of my new ritual. But they got used to it as quickly as they did when for a span of time, I sat on a large lime green balance ball instead of my office chair. Just for fun I'd bounce up and down while working at my desk, and catch the confused look on the face of a passerby that did a double take to see what in the world I was up to...sometimes you have to make your own fun at work!

When we had completed four weeks of treatment, I saw the doctor to evaluate the progress. "How are you feeling?" he asked. "Good, maybe a little tired but nothing dramatic while taking the drug so far." I replied. He looked down, with a sort of melancholy look on his face that puzzled me. The insurance company only pays for four of his aggressive six week plan, so given the considerable out of pocket expense I asked if he thought I would benefit from the additional two weeks of treatment.

Apparently, not feeling worse indicated that nothing was happening, and if the drug was actually killing those little spirochetes, I would have been feeling awful as they fought back. He concluded that he did not think I would benefit from the additional medication, and there was nothing more he could do for me. He actually looked defeated as he referred me back to the neurologist.

So, back to the hospital to remove the central line...
I guess it wasn't Lyme's Disease after all...

Spinal Taps Are Not Fun...

I realize I've been jumping around and my post Still Searching for Answers, left off in late August, early September 2010, so let me take the time to catch you up.  We saw the neurologist at the end of August, after the initial tests came back from the orthopedic.  He performed a neurological exam that vaguely resembles a sobriety test, only you're not worried because: he's not a cop, he didn't pull you over, and you haven't had any adult beverages before the appointment. He didn't say much during the exam, he uttered physical commands, I complied. He asked some questions, I answered and he concluded that it was all very perplexing.  He needed more information so he ordered additional blood tests, another MRI, a test called Evoked Potentials, and finally a SPINAL TAP.

What I learned over the nine months of poking and prodding, was that all of these tests were performed in succession to rule out one horrifying disease after another.  So while we were happy when these tests came back negative, it was like blissful ignorance, as they upped the ante with even more horrifying options, as you played Spin the Wheel of Fate, to see which dibilitating disease we will land on.

The MRI was no big deal, been there, done that, nap time in the noisy cocoon. I passed both types of evoked potentials with flying colors, a few electric shocks but relatively tame. Then came the dreaded spinal tap; this one scared me and my instincts did not fail me.

It suffices to say that the spinal tap was unsuccessful even after multiple attempts. While I lay face down on a cold metal table that could be tilted to the point of standing me upright, a team of four used an x-ray machine, a needle, and gravity to coax spinal fluid to leave my body. That was followed up with spinal fluid leaking from the two pin holes they created in my lower back within 48 hours of returning home. This leaking causes the pressure in your brain to drop, leaving you with the mother of all headaches, and the inability to hold down so much as a drop of water. 

The spinal tap was on Friday and by Tuesday we were heading back to the hospital, to the emergency room this time, to get a blood patch, a procedure that uses blood they take from your arm to seal the two leaking lumbar punctures in your lower back that would not produce the spinal fluid in the first place. This procedure also required a room full of medical professionals. Oh, and since you're already here, the doctor would like us to take some more blood for additional tests.

We later learned that those additional blood tests indicated that I had been exposed to a Lyme antibody; apparently it was also present in a previous series of tests but it seemed unusual, so the test was done a second time. Armed with another positive test result for Lyme antibodies the neurologist referred us to an infectious disease specialist and so the next leg of the journey begins...

My Boy Blue...

It’s likely that some of you will conjure up a scene from the movie Old School with Will Farrell crying out “You’re my boy, Blue!” when stumbling upon the title of this post.  We hear this all the time when people learn our dog’s name, Blue.  Personally, not being a huge Will Farrell fan, I must admit I had to Google the phrase, before I knew what people were talking about. While I can watch Elf repeatedly at Christmas time, I considered agreeing to see Talladega Nights, penance for the occasional chick flick!

When my husband and I married and combined households, I have to confess I was not 100% sold on the idea of having a dog come live with us. No offense to dogs in general, or to Blue specifically, you see, I grew up with dogs as pets and loved having them. However, I’ve spent most of my adult life sharing my home with felines. Not because I liked them any better, they just fit into my lifestyle better being career oriented and often maintaining a fairly aggressive schedule. Dogs need to be walked and cats came potty trained; it was a no brainer for me.

Although, not as rewarding; I had been a cat owner for the last twenty-three years. I say cat owner because I don’t wish to be labeled a “Cat Person”; I am an animal lover.  Let’s be clear about this because the stereotypical Cat Person is weird and everyone knows that…Please don’t send me any nasty-grams on this subject.

Where was I… ok, so here we are getting married, we each have one child, good that works out, we each have a treadmill… that might be tight but we can work it out and oh…? I have two cats and you have a dog. I might not have been 100% on board but I’m no idiot, and I am not going to be the evil stepmother who would not take the dog in… so we may need to pay for cat therapy sessions but let’s give it a try.

So, Blue joined us and the cats hid for about three months… and when Blue was in his crate, they came out, ate, used the litter box and sauntered by the crate just to let Blue know they were still in charge!

Have you ever noticed that dogs come willingly when called, tails wagging, ready to slobber all over you, and cats sit there looking at you as if to say “So, if I come, what’s in it for me?”  Well, my cats aren’t really like that; their downright needy and I’m pretty certain Nik, thinks he’s a dog. So, after a few months we all learned to live peacefully together. That’s not to say there isn’t an occasional chase…but in general they co-exist in harmony. 

The funniest part about it is the jealousy; it’s gotten to the point that when I call the cat, the dog rushes over and it’s not uncommon to have all three of them on you at once.

So… this post is for my boy Blue, who has wormed his way into my heart by following me from room to room, watching to see that I’m ok, and taking every opportunity to slobber all over my face whenever he gets the chance. You are my loving companion, and I wouldn’t want to be on this journey without you…

Parallel Lives...

There is a belief in China that when a child is born, an "invisible red thread" connects the child's soul to all the people: past, present and future, who will play a part in that child's life. If you subscribe to this belief, it was simply destiny that my Chinese born daughter is beside me on this journey.

Initially, upon learning of my diagnosis, I was devastated by the thought that she would have to witness my eventual decline and lose her mom much sooner than seemed fair. The question of why...why would God have joined us only to bring such pain and grief to a child? I have no answer to that question, only deep sorrow surrounding the reality of it.

Although she and I do not share any biological connection, there are so many ways in which I see myself in her. I guess it has always been a question of nature vs. nurture, but there is a connection between us that I've always felt but never expected would play out in this way.

I remember the day vividly in my mind’s eye; it was my eighth birthday, I was sitting on a bench in front of the five story apartment building we lived in waiting for my parents. In my hands a brand new red transistor radio, a gift I received that very day. While my attention was clearly on my new toy, I do recall my thoughts as I noticed my parents walking out of the building. It's likely that this was not something new I'd seen, but for the first time my usually self centered focus, turned toward them, and processed what was happening. Why did my mom need to hold onto my dad's arm so tightly? Why couldn't she walk on her own? Was someone going to explain this to me?

She was diagnosed right after I was born; it was neurological and by the time my eight year old brain noticed, it looked a lot like what I am currently emulating today. It was not ALS but there were a lot of symptomatic similarities that played out in a gradual progression of decline that a child could miss. Sadly, we lost her when I was just 16 years old. My daughter recently began to ask how old my mom was when she died, and I dance around the subject, because I cannot bring myself to tell her, that she was the very same age I am today.

So, here I sit with both the perspective of a mom frustrated by the reality of her physical limitations, and the memory of what it was like to be eight, and realize my mom was different, but not in a good way...

I've been told that my story is uniquely my own; it is not my mom's story or my daughter's story, and that my experience as a child provides an awareness my mom didn't have. I pray that awareness evokes wisdom, patience, and understanding as we travel this path together; I would not have chosen this for her... 

Wow! Mom, his name is in the food...

There are so many ways in which our family has been cared for these past ten months, I could easily write for days as I acknowledge those who have found thoughtful ways to show us their support, this post is for one of those dear friends, Sloppy Joe!

Now, don't get the wrong impression, Joe is not a sloppy guy; in fact he is one of the most meticulous people I know. One day, I was rummaging through a box of files from a project launch that was accomplished nearly ten years ago, searching for some detailed information, and I found the lunch order for the team who was working on the project, complete with names, sandwich orders, and important condiment preferences like: with or without mayo noted. Joe has always been very thorough.

Joe also knows that juggling school aged kids, getting homework done, running a household, and holding a full time job leaves parents feeling like they ran a marathon most days. Add to that equation a parent with physical limitations, or an illness and you've got even greater challenges.

I learned a lot from Joe over the years both personally and professionally. I used to chuckle when he could tell me precisely how long it took for one of his boys to brush his teeth, and how many minutes he had to quiz them in the car on the way to school, to be sure they were prepared for the weekly spelling tests. He had the routine down to a science, and before long I found myself using these strategies to run my own daily marathon.

Although Joe had so much on his plate already, he often took the time to prepare an extra batch of whatever meal he was preparing for his own family and bring it in for me to take home to my family. Complete with salad, sides, bread, dessert, and heating instructions carefully taped to the main dish, Joe delivered several delicious, kid friendly meals!

My family raved about all of the dinners, and especially loved his Ghirardelli brownies with the chocolate chunks, but my favorite response came from our youngest the first time he made us Sloppy Joes. Wow! Mom, his name is in the food! She was clearly impressed!

Joe, this one's for you! Thank you for the many delicious meals; you will always come to mind whenever we have Sloppy Joe's...

Still Searching for Answers...

The summer was moving fast and we were still searching for something that could explain my dragging right leg, loss of balance, and the random twitching of fingers on my right hand, which by the way only seemed to happen in the still of the night.  I also noticed about the same, that my fingers were weakening, and it became difficult to write in the same block printing style I'd come to recognize as my own handwriting. 

At first, I considered the change to be a symptom of a cultural shift from using pen and paper, to typing e-mails and texting on my Blackberry. How often did I actually write anymore? I remember asking my coworkers if they were noticing the same thing, but no one seemed to be jumping on my cultural shift theory.

The Orthopedic ordered a series of blood tests, x-rays, and MRI's in July, and referred me to a Neurologist. I'd had my fair share of blood tests and x-rays but the MRI would be a new experience. I learned this procedure was fairly uneventful; although you must lay completely still, with ear plugs, if your lucky enough to be offered them, and you pray that you don't get the sudden urge to scratch your nose, which inevitably will drive you nuts for the next 45 minutes! 

The Doctor actually ordered several of these MRI's to be performed, and I learned that sometimes the procedure was done on the same area of the body twice, once in the standard fashion, and then a second time using a dye that was set up intravenously. I was not crazy about this added amenity, the complimentary ear plugs were enough, but this particular sequence of imaging was going to be of my brain, and the technician did not resemble Nurse Ratched, so I complied. Frankly, you could easily gain consensus that it was about time I had my head examined anyway.

So now we've got the dye set up, and we're ready for brain imaging in technicolor, and over and over the technician warns me that if I move, we'll have to start the whole process all over again, so at this point the best I could hope for was that I could manage to relax, and maybe fall asleep. After all, who wouldn't want to enjoy a midday siesta? Thankfully, I slept through most of these tests and emerged from the cocoon like contraption virtually unscathed and well rested.

Spinal taps were an entirely different experience...

Choosing to See...

Last year I read the book Choosing To See, written by Mary Beth Chapman, the wife of a well known Christian Artist, Steven Curtis Chapman. In it she writes about her journey through the grieving process after the accidental death of their 5 year old daughter, Maria Sue.

Something about the title and description drew me in. The loss of a child remains to be the most traumatic experience I could ever imagine having to endure. I lost a younger sibling at the age of 23 and to this day I cannot think of any other event that had a greater impact on me and my family. Even now, when I am forced to face the reality of my own mortality, it doesn't come close to the overwhelming grief I experienced at that time.

I had previously purchased a copy of Beauty Will Rise, the CD that Steven Curtis Chapman released after the loss of Maria Sue. This collection of songs was by far the best of his work I had yet to hear. I remember thinking how the lyrics were filled with the pain I had experienced as I moved in and out of the emotional stages of grief, and yet they managed to come through the experience transformed by faith and hope. I purchased several copies that year to give as gifts thinking no matter the reason for grieving, in the end, the process was the same and these words could heal people.

I am still impressed by this couple and their courage to share their journey with us, no matter how personal and painful the experience has been, and although at the time I had no idea of the journey that was unfolding before me, through them I have been inspired to see God's hand in my own journey.

Choosing to see for me, means not to become angry with God for allowing this disease to take my life as I knew it, but instead finding the many ways in which we are blessed by these changes, and blessed by those who have joined us on this journey.

I have always joked that my glass is not half empty or even half full. My glass is overflowing and that has remained unchanged even through this challenge.

My faith simply will not allow it!

May God Bless Joe...

Just yesterday afternoon, we were out in front of the house watching our eight year old daughter master riding her bike without training wheels for the very first time... and out of nowhere appeared Joe. Admittedly, we were distracted as we wanted to capture the moment, but Joe was unaware of the accomplishment, and so he strolled over as if it were just another day.

Oddly, we had never met Joe before but he was interested in chatting so we politely indulged him, while keeping an eye on our priority. "That's a nice scooter you have there...they run between $2000 and $3000." he said. "Oh, I really don't know about that; this was a gift." I replied. "Well, it's a nice one, and I may need one myself; I'll find out soon!" Joe responded. His comment just begged to be acknowledged so I took the bait. "May I ask why?" "Well," he said, "I have a degenerative neuromuscular disease..." and the conversation stole my attention.

Could it really be true? The man standing before me, a man I'd never met, who lives right down the street is also afflicted with ALS? Well yes, apparently so... only Joe can walk, and his speech is just fine and he denied any issues with breathing and swallowing. He described his unique presentation of the disease as Flailing Arms, which after further investigation via the internet, I learned was called Brachial Amyotrophic Diplegia, a form of ALS that may or may not, turn into full blown ALS.

Joe explained that he's had it for six years and that it has only affected his hands and arms. When he extended his arms toward me, I could see the misshapen hands he held out, looked hollowed in the same places as mine, his fingers curled as the tendons tightened, and the muscles in his arms were mostly gone. It was all too familiar; he indeed had some form of ALS.

He shared that he was participating in a study with Dr. Siddique, a neuroscientist with Northwestern's Feinberg School of Medicine, who recently announced his discovery of the cause of ALS. We were well aware of Dr Siddique and the discovery; it has given us hope and now we learned that Joe down the street was donating spinal fluid, blood and tissue samples to help find a cure. There are roughly 35,000 registered cases of ALS in the US on any given day, and it is believed that there may be as many as 300,000 case internationally.

So...May God Bless Joe, who can still walk, and talk, and breathe; I pray he won't ever need a scooter...

Blessings...

This is for my neighbor... He and his wife and two small children live at the top of the block. Just this fall his daughter entered Kindergarten and so now we have another child taking the school bus, who lives on our side of the busy street we need to cross to get to the bus stop. Stay with me...it will begin to make sense as to why this matters.

Anyway, I can use my scooter to accompany my daughter up to the end of the block to watch her cross the street and get on the bus; but admittedly, there are days I don't feel up to the task. While those days are few and far between; I beat myself up over the idea of letting her go alone. I was raised with a healthy dose of good old Italian Catholic guilt so its easy for me to fall into this trap. Over and over, I repeat the rules on how to safely cross the street in case one day I cannot muster the strength to go with her, but it's difficult for me to be okay with this kind of independence.

A few days into the school year I noticed my neighbor and his daughter began to use the school bus service, and so while we waited for the bus, they joined us on the corner. We made fast friends of them, because my daughter cannot imagine anyone who wouldn't be delighted to talk with her, and she started right in asking them questions so she could get to know them. Although his daughter was shy and mostly hid behind him, Dad was tolerant of her inquiries and friendly.

After a few days, when they reached the corner he turned to my daughter and said, "Shall we cross?" and she hugged me goodbye and crossed safely with them. When the bus left and he returned to our side of the street, I thanked him, offered up the customary "Have a good day!" and we parted ways to head back to our homes.

Since that day, I've come to notice that they wait to cross the street until we arrive, and I take comfort in knowing she won't be crossing alone if one day I don't feel up to the task. I'm embarrassed to say that I don't know your name, but thank you neighbor for stepping up and making a Mom feel a little less worried.

In case you're out there and you read this...Do you like brownies? I'd like to bake you some...

Frustrations...

Re-posted from 10/6/2011 due to accidental fat finger!


It's fairly easy to accumulate a growing list of frustrations as your previously obedient muscles no longer respond to visceral commands. Simple tasks you've always taken for granted like opening a plastic jar of peanut butter, removing the small square plastic thingy from the bag that contains your loaf of bread, and turning the knob on the fancy toaster you purchased at Williams and Sonoma, become an exercise in stamina and patience. You begin to question how badly you want that peanut butter and jelly sandwich, and consider that using your teeth to tear the wrapper off a protein bar, although barbaric, might be the easier way to go.

Additionally, you decide that it wouldn't be such a bad thing if the cleaning lady suddenly developed a mild case of OCD and straightened the artwork hanging on the walls after she dusted them. It's nice to know she’s thorough, but does every piece need to be knocked off center just so I can obsess about it every Friday afternoon? I know, let it go... I'm pretty sure that someone else in this house will find it equally as irritating and set them level again anyway.

Then there's a whole list of frustrations related to dressing and undressing that make you want to live out the rest of your days in sweat pants and garments with Velcro closures. If your home alone, the sports bra you can pull over your head is going to win hands down over that fancy lace bra with underwire... and since your legs don't seem to move with the same sense of urgency your bladder has assigned to the task of getting to the nearest bathroom, why button that top button on your jeans and create another obstacle to completing that performance when the time comes?

Grooming tasks in general present a challenge: tweezing, shaving, clipping your nails, even using a hair dryer, brush, or comb can be frustrating. A good hair cut, a dab of gel and I'm letting Mother Nature take responsibility for the end result. Forget about trying to put on mascara or eyeliner unless its Halloween and it will be considered part of your costume, otherwise you're apt to frighten the children at the school bus stop with the mess you make of your face. A steady hand is required for that task and that's a thing of the past.

I realize it sounds like I've lowered the bar, and perhaps that's a little bit true, but some days you just have to pick your battles and save your energy for more important things like playing with your kids.