The Healing Miracle

Chimayo Sept 2004
With Grandma and Grandpa in September of 2004

Fourteen years ago this month, my parents fulfilled a promise to my grandmother.  If she recovered from another serious hospital stay, and she could recoup her strength, we would take her to El Santuario de Chimayo.  For those who have yet to make the pilgrimage and for those that have not even heard about it, the village of Chimayo is home to a church that holds a well of holy dirt.  People travel from all over the world because they believe by rubbing the holy dirt on the area of your body that ails you, you can be healed.  Some drive, some bike and some even walk.  They walk for miles, even hundreds of miles.  The walls of the rooms of the church are lined with photos of those that have made the pilgrimage to find healing as well as crutches from those who were healed and were no longer in need of them.  The church is surrounded by gift shops in which you can buy candles to lift a prayer and small containers to take the dirt home.

My father did not expect miracle cures from the holy dirt, but he was a dutiful son and a man of faith as well.  Be believed in the power of the place.  He found healing in the

Dad at Chimayo Sept 2004
Dad in Chimayo in September of 2004

surrounding Sangre de Cristo mountains, where he felt closer to God.  From the creek that ran behind the church to the fresh air in his lungs, he felt the Holy Spirit more outside the walls of the church than within it.  (He also found spiritual healing in the snacks and the chile you can purchase from the local growers and merchants.  I am my father’s daughter.)

Since that trip, I have lost both my grandparents and my father.  I’m older, but don’t feel wiser.  I feel beaten and tired.  My job has caused so much stress on my body and my mind, not to mention all the new chronic illnesses I have accumulated over the years.  My husband, also plagued with physical ailments, had never made the short journey to Chimayo.  Because this had been a pilgrimage of utmost importance to my family, I decided to carry on the tradition.

My husband and I tasted powdered and crushed chile out of pistachio shells, we took pictures and talked with other tourists.  When it was time to enter the church it was eerily quiet as pilgrims lifted their prayers.  I sat in a pew and prayed.  My husband and I went into the little room off to the side of the altar to collect our holy dirt.  Do I believe that this dirt from this well can heal my body?  No.  I do believe in the power of faith, and the powerful way our minds can heal our bodies, but I did not transfer this belief to dirt.  Did I rub the holy dirt on my body?

Hell yes.

When I pressed the dirt to my husband’s forehead and his neck, for a split second I prayed with every cell in my body that it would actually work.  I prayed for a miracle.

When we walked next door to the Santo Nino Chapel, we looked into the prayer room that again was filled with pictures of those seeking healing, but this time it was all small children.  Trinkets and booties were everywhere, representing the lives of those that came out of great faith to find comfort, peace, healing…a miracle.  I couldn’t help but wonder what happened to all of these children.  Did they get better?  Did they find their miracle?

I traveled to this place to find my own healing.  I wanted to breathe the mountain air and find some peace of mind.  I wanted stress relief.  What I came away with was another perception of this place.  To me, the miracle wasn’t in the dirt or in the holy water.  It wasn’t even in the air.  It was in the love that led to the journey.  Each one of the people in those pictures was loved so much by someone that they made the journey to this remote little village in the middle of nowhere to lift prayers and retrieve a miracle for them. I felt that love with my grandmother and our fulfilled promise to take her to El Santuario, I felt that love when I saw that smile on Dad’s face as he helped her avoid every stone that might make her trip.  I felt that love when I pressed the dirt to my husband’s pain.

My grandmother gave me more than a tradition.  She gave me an act of love that I can now share with my husband.  We all hurt.  We all can break.  But not all of us are loved by someone who will take your hurt to the highest power no matter the distance and make a plea on your behalf.

When you find that…that is your miracle.

 

Chimayo Sept 2018
El Santuario de Chimayo September 2018

Dear Senator

Dear Senator,

I am one of many of your constituents writing and calling your office concerning the Senate health care bill. While relieved that the vote has been delayed, I am fearful for the future. So, I write.

You know the numbers. You know how many New Mexicans are covered by Medicaid, how many live with pre-existing conditions and how many need or may need treatment for addiction. You know how pervasive poverty is in our state and how not only access to care, but access to affordable care can make the difference between life and death for so many of us.

You’ve also, I’m sure, met with representatives from our hospitals and our large insurers. You’ve met with employers and with individuals who are concerned about their rising premiums. I know you meet with patient advocacy groups regularly who tell you their stories of living with disease, the personal and financial costs of the disease, and they tell you to please support research and access to care. I’m sure your staff have many leave behind packets with personal stories and statistics. This letter doesn’t re-state all that you have heard and read, but instead poses a question.

As an American, I can’t help but wonder what the philosophy is behind this draft bill, and why instead of working to repair the Affordable Care Act, the GOP is looking to completely replace it. We’re all reading about a possible future should this bill pass in which millions lose access to affordable healthcare across the nation including those on Medicaid who need it desperately.  “Healthcare is a business” and “this isn’t an emotional decision” are position statements that are beyond belief to me when we project how many of our fellow Americans may die as a result of this bill.  How is this at all even discussed as an option in a country that values prosperity and freedom?  In my mind, the question arises, do I have a right to health care? I’ve read conflicting arguments on this question. Many believe it is a basic human right, and others see healthcare as a business and believe that if citizens have a right to healthcare it is impeding the freedom of others, such as those that would be forced to provide it. As old-fashioned and patriotic as it may sound, one of the perks of being an American is, well, liberty or freedom. The Declaration of Independence states, “ We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

Believe it or not, I didn’t choose to be among the millions with chronic illness. If I did, my story would read more like this.

“I remember when I decided to be diagnosed with my first chronic illness. At 14 years old, I thought, I would love a disease that allowed me to first, mooch off the government and second, provide me with social and economic limitations. Why would I choose to be diagnosed with a disease with such financial and emotional costs? Oh, to be a more grateful citizen than your average healthy person, I suppose. Oh, and to gratefully mooch off the government. If at all possible, I would use my disease to not work so that I could be lazy. After all, laziness is why I chose to have all these devastating illnesses. Totally worth it.  Right?  Still waiting all the great benefits of disease to kick in, but I’m sure they will eventually.”

Of course, I didn’t choose to be diagnosed. I also didn’t choose the illnesses that I was diagnosed with as an adult. Like all those living with chronic illness, we were dealt a shock. Why do we deserve to pay so much more in our struggle to be healthy, if we were never given the choice? I am so fortunate because I have insurance through my employer, but there was a time when I moved home and helped with the family businesses. I was only able to be with my family because my husband and I could get covered by Medicaid. Then, I found employment with health benefits. I’ll never take for granted that Medicaid was there when we needed it, and it kept me healthy.

I didn’t intend to be an expensive patient, but I do need comprehensive and affordable health insurance. The essential benefits packages that we fought so hard for just a few years ago mean that I won’t be thrown into poverty just to pay for my medical care, and for all those who are yet to be diagnosed, it won’t mean bankruptcy. It means we don’t have to choose between food and our prescriptions.

Here’s the deal. If I don’t have access to my prescriptions, I can’t work. If I can’t work, I won’t have access to my prescriptions. My prescriptions, and my many specialists, keep me able to do things like drive a car and hold employment. I can then pay taxes, and contribute to our economy. As simplistic (and slightly sarcastic) as that may sound, it’s the truth.

What would happen if my provider cut essential benefits like prescription drug benefits or coverage for my specialists?  Even with a pretty good paying job,  I couldn’t afford the out of pocket cost.   I would have to just stay home in pain, suffering from the complications of my illnesses that would eventually take my independence before taking my life? Basically, without affordable insurance, I couldn’t work. I would have to use the emergency room on a regular basis just to get medication and then I couldn’t pay for the hospital visits. Then, the complications of my disease would worsen. I would then be trapped by my pre-existing conditions.

I have already written that I am fortunate to be covered. If you met me and shook my hand you wouldn’t be able to tell that I live with chronic illnesses. I am not that constituent that will tell you that I would likely lose my insurance should this bill (or something like it) pass, and I know many have shared that story with you.  But of course, even being among the healthy and insured, I have pre-existing conditions and the protections I have seen for pre-existing conditions in this bill are anything but.

What I can tell you is that health care is freedom. So, do I not have a right to affordable health care so that I can work and contribute? Do I not have a right to manage my illnesses with medications, necessary tests and guidance from qualified doctors so that I can live and pursue happiness? Do we not all have that right?

Sincerely,
Lawren McConnell

Remembering Dad

“This is my baby, Presh.  I call her Presh, because she is precious.”

Dad would always introduce me as his “Presh.”  It would be the first thing he would tell a stranger that would come across our path.  I would get quizzical looks from people because I was a woman in my thirties, not a baby or toddler.  But once he explained the nickname they would smile and I would give a shy and slightly embarrassed head nod.

I hope Dad knew how much that little nickname meant to me.

When Dad was diagnosed with Parkinson’s in 2012 I flew from California to visit my parents a few months later right before Christmas.  Dad was still every bit my dad, but his disease was noticeable for the first time.  Amongst all the reassurances that he would be fine from friends and family, I knew better.  I don’t know how I knew, I just knew.  So I cried.  For days and days I cried.  When I emerged from my pain, I had a coat of armor.  For the next five years, my father deteriorated in front of my eyes, both physically and mentally.  We were losing him, but I didn’t cry.  I was strong for him and my family.  I owed him that.  Every time I was hurt or scared I was comforted by his words, “It’ll be fine. You’ll be okay.”  These simple words were never empty to me because they came from a man of incredible strength.  And he was always right.  So I never worried or cried for long.

My armor protected me as I had to witness his suffering from disease, as I had to say goodbye, as I had to lay to him to rest.  Now what?

From those that have lost their parents, I have been warned that it will hit me all of a sudden, or that I will need to take time to reflect.  I think today, Father’s Day, is a fitting day.  So, let it hit me.

You know who could help me through this grief?  Dad.  I think that is what is so hard for me.  It’s not the father I had that I will miss, but the father I will need in the future that I am devastated to not have.  Who will tell me that it will be fine, that I will be okay?  If I succeed in any area of my life, I can’t see his smile and the pride on his face.  I can’t share new experiences with him.  I can’t reminisce any more.  Remembering Dad is easy, thinking of my future without him is what hurts.  And it hurts like hell.

So first I will remember him.  A lot of daughters are thinking about their dads today, and lucky ones, like me, grew up with an amazing father.  Dad and I had drastically different childhoods.  My dad didn’t have an amazing dad.  My father’s childhood was nothing short of tragic.  How he emerged with a sense of humor and a love of life is beyond me, but he did follow in his father’s footsteps for a while and became an alcoholic.  As an adult, I learned more about his first life, before he gave up drinking.  It was filled with anger and grief, betrayal and loss.  In April of 1987, my father fell on his knees, gave his life to Christ and gave up drinking.  I was three years old at the time, the youngest of his four children.  He never had another drink.  I don’t remember any of this.  I only remember that I would run into his arms and jump on him to play and he would wince in pain because he was recovering from cirrhosis.  That was the only trace of his previous life I could see growing up.  He played me with anyway.

My childhood was radically different.  My father was not an alcoholic.  He was always around.  He taught me about landscaping and planting trees and rose bushes, although his lessons never really landed.  He let me ride the tractor and even though my constant need for attention delayed his work, he would always indulge me.  He taught me how to play basketball and ride a bike.  He taught me how to saddle a horse, and how to take care of animals because they take care of us.  He would joke that I was spoiled, and I was.  Not only because I had a 90’s Barbie collection that my mother would describe as “ridiculous,” but because unlike my father, I had a Dad that was my constant guide, counselor and friend.  Our relationship only strengthened as I grew older.  How was it he was able to give me this?  He was so broken before.  I believe it was his faith that healed his brokenness and only a miracle of God that I had such a loving Dad.

Dad wasn’t just healed for my benefit.  He dedicated himself to his career in law enforcement.  He helped so many people.  He had witnessed depravity, murder, kidnapping, child abuse, drug abuse, domestic violence and the list goes on.  He wasn’t spared further pain after giving up drinking.  He lost his son, my older half-brother, in 1991, but instead of turning back to the bottle he again prayed.   At that time, I remember Dad spending a lot of time outside planting.  I remember him sitting in his recliner staring into space.  As a child, I didn’t understand.  As an adult, I still don’t understand how he could face such unspeakable pain and then turn that pain into a way to help others.  There are so many parents that lose their children to gun violence.  My dad delivered the news.  He could comfort in ways no one else could.  He also reached out to fellow officers who battled alcoholism and told his story openly and honestly.  He founded a Bible study called, “Cops for Christ,” a place for public servants to share their stories, pray together, find comfort in the Word and learn more about faith from priests, ministers and pastors from different churches and communities.

Dad never shared with me the tragedy he witnessed in the field.  He wanted to protect me from that as long as he could.  One lesson that he may never know landed, was to love thy neighbor.  Seems simple enough, but much harder in practice.  All kinds of people would turn to my dad for help.  They could be the recipient of a speeding ticket or the victim of a violent crime.  They could be wealthy or they could be poor.  He tried to help everyone he could, and he wanted me to witness that.  If you needed food, Dad got you food.  If you needed a place to stay and park the trailer, our yard was your home.  If you needed a little money, Dad could find some work for you (even if he could do it himself).  As a child, I never understood why Dad would surround himself with all these needy characters.  As an adult, I know that he was following the footsteps of Christ.  He would not judge you based on your social class, political party or the sins of your past.  Everyone falls short, and everyone needs a helping hand.  My dad was a recipient of grace and forgiveness, and he never forgot it.

That’s the lesson I hope he knows I got in the end.  Everyone deserves another chance to become better, to do better.  And there are those, like my Dad, who finally take the opportunity to create a life they never thought possible.

Dad left a lot of different memories with different people.  Many were touched by his life.  When I remember him as only I can as his daughter, I am truly humbled.  My father was by no means perfect, but to me, there was no one more perfect to be my dad.

Now I must move forward, which is much harder than remembering.  When Dad took his last breath, his suffering was over, but for our family, the world stopped spinning.  How is it possible to live in a world that no longer contains Lawrence Romero?  My grief, of course, is selfish.  But, I must deal with it when it hits me hard on days like today.  I must move forward by remembering what I promised him when I said goodbye.

Tell His Story
Dad was worried that he didn’t have the chance to reach more people.  He wanted to help more people suffering from alcoholism.  He wanted to let them know that it wasn’t hopeless.  I didn’t battle alcoholism like my parents and grandparents because that battle was waged on my behalf.  Dad broke the cycle.  My father’s example reminds me that this disease is incredibly dangerous and that I don’t need alcohol to tame my sorrow – I have my faith and my family.  Because I have not battled alcoholism myself, I cannot help others the way that my father could.  But I can tell his story in hopes that it provides a real example of triumph over adversity, any adversity, and that there is mercy and forgiveness for those that seek it.

Take Care of Mom
I did tell Dad that I would take care of Mom although I laughed when I said it.  Mom took care of not only Dad but she took care of me.  She is a strong, independent woman, and she is going to do what she wants when she wants no matter what I say.  But I can fulfill this promise by being supportive as she learns how to put herself first for the first time in 35 years. Mom is smart and resilient, so all I can really do is watch her embark on a new adventure.  I know she will do incredible things.  I have no doubt.  I’ll give my two cents here and there, but taking care of Mom means making sure that she knows she is loved beyond measure.  Dad wasn’t always a prince charming (to say the least), but he loved her deeply.  So, Dad, know that she is not alone, and that even though you are not here, she is still loved here on earth, very deeply.

Be Okay
This is the hard one.  I told Dad I would be okay.  It’s so much harder to be okay without him here to tell me that everything will be fine and I’ll be okay.  Even when he was sick he would have moments of lucidity that he would use to tell me that it was okay.  He lived in a prison.  He could barely move and he was in so much pain at times.  He was fearfully confused from dementia, but he would still try to comfort me.  Oh, Dad, I never told you how hurt and angry I was that you got sick.  Being okay was easier somehow when you were here.  The world was safer with you in it.  It made more sense somehow.  But dammit, I’m going to be okay.  I have a family that loves and comforts me and I have work left to do.  More than that, I have your words.  You may have left, but you left behind your words of comfort.  I’ll listen to you still.  You stayed strong when struggle came, and I am, after all, your daughter.  I’ll always be yours.  Your Presh.

Scan_20170427 (21)   001.JPG

 

 

 

 

Mr. and Mrs. Do Nothing

“Do not confuse my bad days as a sign of weakness. Those are actually the days I’m fighting my hardest.”
– Unknown

I am the dud of every gathering.  I am the first to leave…if I show up.  When I am there, I am the person to get the most “Aww…”s followed by an awkward shift in body language and an obvious desperation to change the subject.

Don’t ask me, “How are you feeling?”  Don’t ask me, “How is your husband doing?” Oh, and you really don’t want to hear the answer to, “So how is your Dad doing?”

Chronic illness sucks.  It also sucks the life right out of parties.  I’m “that girl.”  The one to feel sorry for.

I’ve always been introverted.  Heaven is a pancake dinner in my pajamas, and I have always avoided social situations when I could.  But this is a new level of flakiness for even me.  Why?  Because I don’t feel good!

My husband, who I have written about in past posts, also doesn’t feel good.  For three years, his pain has become increasingly worse with no diagnosis yet.  It hurts for him to walk, to move, to not move.  It physically shows, so he hates going places not only because he feels like he is mimicking someone who just got hit by a car, but because he doesn’t feel like it.

I had my first chronic illness, epilepsy, under my thumb.  My medication worked.  Seizure-free.  I could exercise, and work long hours and take care of my husband.  Then my stomach was messed up…for a long time.  After a few months I got a diagnosis:  Ulcerative colitis.  This new chronic illness is not controlled.  My first course of treatment does not seem to be putting me in the Eden of UC patients:  Remission.  Focusing is hard, sleeping is nearly impossible and going places? My angry colon starts protesting with just the thought.

The Chrohn’s & Colitis Foundation of America has a walk.  My husband immediately signed us up.  Just trying to absorb the fact that I have an autoimmune disease, I was really upset to be diagnosed with another illness that has a walk associated with it.  But I followed the lead of my husband and parents and was very optimistic that I would feel better soon, and there so many worse diagnoses out there, etc.

We didn’t go to the colitis walk.  Why?  Because I have colitis and I didn’t feel like it!

So, we are that couple.  Birthday party?  Nope.  Fun gathering of intellectuals?  First ones to leave.  Froyo with my bro? Haven’t even tried.  We’re starting to not even make commitments knowing that they will more likely than not be broken.  I go to work, and the medication I am taking keeps the symptoms at bay for a nine hour work day, but barely.  On days when the meds can’t help, I have to call in sick.  When I have to call in sick, I feel like a complete failure, because I’m supposed to be tougher than this.  I’m also supposed to be happy and funny and optimistic and fun to be around.

I’m freakin’ PLEASANT, dammit!

My husband’s pain is awful in the morning and then depending on if its a “good” day or “bad” day, gets worse or lets him move around, sometimes even drive down the street.  My symptoms begin to alleviate in the morning then get worse in the late afternoon and then just keep me up all night.  Between the two of us, there is no good time.

Husband and I love our alone time, but we are also forsaking our ability to carry conversations with real, live adults.  Small talk is hard for me, and I worry my husband will only know the outside world through Facebook.  Talking with others who are living with chronic illness helps, but we still are the couple to feel sorry for because of our age.  We should be more active and have more friends.  We should be starting a family and taking Instagram photos on top of the mountain crest we just climbed.

Do I feel stronger for living with chronic illness?  I wish I could be flowers and roses, but this post is not about making chronic illness seem like a great asset.  No!  I don’t feel stronger, I feel like crap.  The physical crapiness is made worse by the mental anxiety of not being the best employee, wife, daughter, volunteer or friend.

So, we do nothing.  Some days are good, and we go out with family or run errands we had been putting off day after day, but most days are not good.  What can we do?  We can stay in our pajamas, cook a healthy meal and watch TV.  Glamorous?  No.  Productive?  No.  But Mr. and Mrs. Do Nothing are not celebrating chronic illness, we are living with it.  The best we can, day after day, and tomorrow may be good.  If it’s not, then we have each other, and the comfort of our marriage…and our pajamas.

And for that, I’m thankful.

Diabetes Doesn’t Get Old

“Diabetes is a lousy, lousy disease.”  
— Elaine Stritch

My dad has had type 2 diabetes for well over 25 years.  In fact, we’re not even sure how long.  We lost count after 25 years.  It’s been a long time.  

I’ve written many times about my dad’s diabetes and the complications he now has as a result, as well as his daily frustrations that come with the disease and our hope for better treatments.  Dad now has a newer disease to talk about, too.  Parkinson’s Disease (PD).  Parkinson’s is a lot younger than my dad’s diabetes.  Dad was officially diagnosed with PD two years ago.  So, Dad is a walking pharmacy.  He takes oral medications for both PD and type 2 diabetes, as well as two types of insulin and don’t even get me started on the homeopathic treatments.  

My father works out five times a week at our local physical rehab center, a routine that is vital to his living well with PD (not to mention the diabetes)!  Even though he stays active, he does joke a lot about getting old.  He says that getting old is not for the weak.  

After so long living with diabetes, the goal is to know it so well, you can manage it (not control, but hey, manage!).  Well, Dad’s quarter-century-old diabetes hasn’t accepted its age.  It hasn’t gotten milder, but instead has become even more erratic.  After years and years of Dad battling hyperglycemia, we started battling hypoglycemia.  Some of the low blood glucose levels we could pinpoint the cause and even be proactive, but some had no known cause.  It could be this, or that…or this AND that, plus a possible other thing.  Or not.  Diabetes, unlike Dad, doesn’t get old.  It throws new punches and acts as young and rebellious as ever!

Dad has a not so fun complication from both diabetes and getting older called atherosclerosis – a narrowing and hardening of the arteries.  This led to a small stroke, then a major heart attack.  After the major heart attack, we cracked down even harder on what Dad was eating.  The strict low cholesterol diet waned after time, but Dad was still healthy.  His cardiologist was happy.  But, diabetes has less flexibility than Dad’s team of doctors.  

Two weeks ago – BOOM – second major (and I mean, MAJOR) heart attack.  It was a vicious attack.  One of the main arteries in the front of his heart was 100% blocked.  I exaggerate not.  The cardiologist said that time was on our side.  Dad now has seven stents and is still alive, although with his heart recovering….he feels older than ever.  

Being in the hospital is getting old.  It smells like fish and medication burps.  We’re so exhausted of being scared and worried and sleep deprived.  The constant struggle to keep Dad’s organs, arteries and nerves working properly is getting old.  And yet, diabetes stays very active.  

I like to think of diabetes as a spider, that you can catch and control by placing a cup over it.  Ha!  Gotcha Diabetes Spider!  A week of normal…ish blood glucose levels!  I win!  Then, the Diabetes Spider takes out an AK-47 and blasts through the cup.  Then it’s running amok with an assault rifle!  That’s what the heart attack is like.  It’s as scary as a Diabetes Spider with an AK-47.  If not, scarier.  

Dad confesses daily that he’s getting old, but he doesn’t have the luxury of just getting old.  He has to stay on top of the cup with the spider in it.  We have to find better cups, because, as old as we all get….that spider is always going to be there, young and armed, and we have no clear way yet to kill it.  

Diagnosis We Don’t Know

“He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.”
— Psalm 40:2

Diagnosis We Don’t Know.

Diagnosis We Don’t Know is the latest in the seemingly endless barrage of crap that keeps hitting me and my husband.  What…the…*explicative*???

Okay, end of my whining.  Now for the backstory (the condensed version).

My husband’s symptoms started about one year ago, shortly before we moved back to our home state.  Why did we move back to our home state?  My father had been diagnosed with Parkinson’s Disease and my sister with terminal cancer.  My mother was drowning in three businesses, and Dad hadn’t seen a doctor since his diagnosis.  He has six doctors, so that was a lot of appointments to miss.

Upon our return, Dad started to really hit his Parkinson’s and his diabetes hard, and at the same time we were proud of Dad, we were frustrated with his diseases.  I developed a strong anger towards disease, stronger than ever before, and not a very healthy anger.  My anger and frustration peaked when my sister passed away.  I decided to focus on getting Dad through his grief and back to his fighting stance.  Whereas living with diabetes was like shooting a missing target, living with Parkinson’s (PD) was like shooting at a target that you couldn’t even see.  Why did he develop PD?  Don’t know.  What stage was he in?  Don’t know.  Will an extra dose a day help?  We can try…don’t know we’ll see.  Physical therapy.  Speech therapy.  My hatred of Parkinson’s was intense partly because I was so confused by it.

It was a lot of stress, all the while I’m helping Mom with two of her three businesses and Husband is finding that he can’t think straight at work.  His first symptoms seemed like his old essential tremor was claiming more territory.  Then he felt as if he was in a fog.  Then the tremors led to soreness…then stiffness.  Then he couldn’t take wide strides when he walked, so he started to shuffle.  His right side became a lot slower than his left.  All this coupled with the fact that he lost his sense of smell a long time ago….the list of symptoms pointed to…you guessed it…Parkinson’s.  End of backstory.

The thought of my husband having PD was too much to process because going through it with Dad as was intense.  Dad is a strong optimistic guy, but this disease can take down even the strongest most upbeat of people on the bad days.  Not to mention fears of the future.   I didn’t want my husband facing the same thing!  My husband is young, so it is very rare for someone his age to be diagnosed with PD, but of course, it does happen.  Nine months ago, when his symptoms were becoming too much to ignore, we went to the doctor.  Then to a neurologist.  Nine months of tests including blood work, an MRI, an EEG and even a thyroid ultrasound.  Test after test after test.  Each new appointment brought up another “It could be…we can test…”  We finally secured an appointment with a movement disorder specialist who after a physical examination reported “NOT Parkinson’s”.

HALLELUJAH!!!

So what is it?  Uh…we don’t know for sure.  As elated as I am that he wasn’t diagnosed with a neurodegenerative disease, it’s hard to really jump for joy at my fullest capacity to jump without knowing what it is exactly.  In other words, we still can’t completely rule out anything.  For my husband, it has been a long process of elimination.  But we don’t know what it is by knowing what it’s not…yet.  This, to me, is the most frustrating aspect of brain diseases and disorders.  There is no knowing exactly.  The brain is too complicated for such wishful thinking.  Even though we have come so far (I mean, I have epilepsy and was never prescribed an exorcism), we are still in the dark ages when it comes to the brain.

It’s frustrating to watch my husband struggle to do simple tasks or to hear him moan in his sleep.  It’s downright torture.  But when I start to cry out to God “Not fair!” I think of all the people who received a diagnosis and it was devastating.  A lot of these people are in my family.

On top of the health-related stress the financial stress is very pressing.  A few weeks ago, my toothache became pretty bad, so we found a dentist.  After (almost) 30 years on earth, I had my first cavity.  I was handed a proposal for a root canal and crown to the tune of $2,500.  My husband was handed the same proposal in the next room at the same time.  I went numb, and it wasn’t just from the three shots of Novocain it took to drill out my cavity and fill it.

People deal with cavities all the time, and I consider myself a tough lady with a high pain tolerance but it when it comes to my teeth I am a wimp.  I felt so betrayed by life!  I became a complete monster.  I needed constant sympathy and petting from my husband, and I was selfishly angry because he was supposed to be the healthy one.  I’ll deal with all the chronic illnesses, but he has to be the one to deal with me and be the caretaker and bringer of pain killers.  I writhed and whined in tooth pain for two full days.  I blamed everyone but myself for that.  At the end of the two days, I started to sort out my monstrous behavior and thoughts of throwing things.  Seriously…a cavity?  C’mon.  I had a toothache-induced nightmare that my jaw fell off.  So see…it could be worse.

Every time I drink anything I am painfully reminded that I need a root canal.  But I can deal with the pain for now.  We have a lot of medical bills, but we will always have a lot of medical bills.  It’s not worth it to worry about tomorrow’s medical bills.  It’s difficult for me to talk (or write) about financial stress (I am a prideful woman), but I know there a lot of people out there dealing with similar struggles.  They know how much time out of the day it takes to simply call your insurance provider or clinic or pharmacy.  How one piece of mail can turn into two months of phone calls and hair pulling.

I don’t know where God will lead us, but lead us He must, because I have no idea what is going on right now.  My husband and I have a lot of blessings to count, and in the darkest moments of utter confusion, I try to count them.  We have an unwavering God who knows what is to come and is preparing us for it, never giving us anything we can’t bear, and the strength to meet our struggles.  We have each other.  We have parents who love and take care of us.  We have friends who follow-up and ask how we are doing.  We have a senior cat with impeccable dental health.  I mean, the list goes on and on.

Is my life where I thought it would be right now?  Absolutely not.  I fight off the feeling of unfairness when others my age are able to hold dinner parties in nice homes with beautiful kids and plan family vacations.  I have to keep in mind that Diagnosis I Don’t Know has given me some gifts.  I’ve learned patience.  I’m a lot stronger now than I was a year ago (cavity episode aside).  My marriage continues to strengthen.  The more strength I am given the more I can give to my husband.  Most importantly my faith in God hasn’t been this strong since I was a child.  My husband and I are being worked on by the Holy Spirit, and we do have a long way to go filled with obstacles, setbacks, risks and more opportunities to stumble.  I’ve never felt more blessed because even though I can’t see in front of me, I know the ground I stand on is solid.

My “Non-Wedding” Nuptials

Prayer Hands

“For this reason a man will leave his father and mother and be united with his wife and the two will become one flesh.”
— Ephesians 5:31

Husband and I met in October of 2005 on a blind date.  Unimpressed with one another, neither one of us could remember how we ended up on a second date.  But we did.  Chalk it up to a guiding hand.

Over the past seven years and 11 months, we have been tested by fire.  We’ve faced trials of unemployment, extreme financial stress, new jobs, relocations, health scares, deaths in our families and three breakups.  We know how blessed we are, we know we could have faced much, much worse.

Husband was there, rubbing my shoulders, comforting me when I felt completely alone and it all piled up and I collapsed underneath a real deal nervous breakdown.  When you are weighed down by so much grief and anxiety, your body forgets how to act normally and I felt I had lost all control.  The only times when I felt I could breathe easier were when he was holding me or I was in prayer.  These tests we have been through together have made us stronger, brought us closer, and have also stripped away our desires for anything other than a life together.  Just having each other has proven enough to get us through so far.

We were married by our family pastor.  He has meant so much to our family, as he baptized me and my father, has been a spiritual guide, and even married Husband’s parents 34 years ago.  He has comforted us in grief and loss and taught us to always “Go to the Lord in prayer.”  His wife was in attendance as well as our parents.  That was it.  No wedding party.  No guests.  No big dress.  No cake.  No band.  Just us.  Our parents were present to give us away as we started a new family.

I have absolutely nothing against weddings.  I think it is beautiful to declare your love in front of your family and friends!  We didn’t have a wedding for a few reasons.  First and foremost, we wanted it to be about the two of us, entering a sacred contract.  We wanted to focus on that, without being distracted by seating charts, timing the food, my hair, etc.  (I’ve planned and managed events.  I know I would have been distracted.)  I had that big wedding planned in my head for years, but after all this time, it slowly melted away, leaving me with one desire – to begin my marriage.

Second, weddings are expensive.  Husband and I want financial security and independence.  We want to live in our own house!  We want a savings account!  We have a lot of work and penny pinching ahead of us.  We know lean.  We’re tired of the stress.  So, even if we had a small wedding, and we started inviting close family, we would inevitably hurt even more feelings of those we love but did not receive an invitation.   I have been in those uninvited shoes.  Not fun.  So, for those who wrote me and addressed their missing invitation – Sorry!  We love you, we give praise because you are part of our lives, but we did not have an event to invite you to!  I got some nasty comments about not being invited.  I’ve also gotten so many well-wishes, that I feel overwhelmed with how many people are happy for us.  We are not letting people cloud our memories of what was a beautiful and meaningful moment between the two of us with a shadow of guilt.  We did not mean to hurt anyone!  Hey, my dress was $25 and my bouquet was donated.  I hope those that are hurt understand that we have been together enough time that we felt already married.  We have felt that way for quite some time now, we just needed to legalize it.

I sympathize with brides who have worked to make everyone happy, because it is an impossible task.  I have a small handful of people who are upset with us.  Over the years with my friends, I have witnessed so much stress and hurt feelings during the wedding planning process and the wedding itself.  If we had been married years ago, if we had a wedding budget and we actually planned a wedding, I would have been on Faux Pas #5692 before the time we exchanged vows.  I salute the women who plan their weddings, because I feel the added stress would have propelled me to Vegas to elope, which would have really made people upset!

Weddings with guests are about declaring your love and commitment in front of your loved ones.  Lee and I have declared such love and shown such commitment for almost eight years.  We’re pretty much old news.  That is the last reason we voted against a wedding. God knows our love for each other and we know it.  That has proven enough.  For that formal declaration not made in front of a full church….I write this – My friends and family know that  I dragged my feet for years, and while I was doing all that foot dragging, God was removing every opportunity that would pull me from Husband and adding lots of obstacles and experiences that would show how much I loved Husband and how much better I was when he was with me.  When the time finally came to say our vows, I felt no reservations, and I have never been more sure of anything.  He’s my best friend and partner in life.  I’m incredibly fulfilled and completely taken care of each day I get to spend with him.  I praise God for him, for I feel undeserving of such a committed and faithful man.

Our “non-wedding” nuptials were not due to selfishness, but honestly they were a reflection of our experiences during those tough times when it felt the world was collapsing around us.   Just having each other to hold as we prayed was enough.

Stuff

 Cootie

“Every increased possession loads us with new weariness.”
— John Ruskin

During a recent family gathering in which the conversation lead to a discussion on material possessions, I was asked, “Do you get attached to stuff?”  My answer was a quick and easy, “No.”

Oh, I am by no means above wanting things.  Just check my Pinterest boards.  But I do not attach sentimental value to things anymore.  I don’t think I’m cold about it.   What has turned me apathetic to my belongings has been all the moving Fiancé and I have done in the past few years.  When you have to pack all your stuff, you realize how much you don’t need.  And how much you hate to pack it.

Fiancé and I live the simple life when it comes to our stuff now.  If we’re not using it, we’re donating it.

He who dies with the most toys still dies, right?  Stuff is just stuff!  With one exception.

I do have a material possession that I am attached to. My “one thing.”  Everything else precious to me is intangible – in memories and thoughts – except my one thing.

Cootie.  Cootie the bear.

Mom and I made Cootie when I was young enough to still go crazy over stuffed animals, but not too young enough to help.  Mom found a pattern, sewed him together, and I stuffed him and helped sew him up.  His last seam is all too easily noticed, reflecting my talents as a seamstress/bear maker.  His eyes are slightly misaligned.  But, he can look happy, tired, angry and confused.

Cootie moves to California
Cootie moves to California

As I near 30 years old, Cootie still goes with me on all major treks in life.  He moved with me out of my parents home, out of state, out of that state, and all the way back again.  He gets seat belted, because my “one thing” has to be remain safe.  He takes care of me at night by keeping danger away.  True story.

Cootie hates sharing the road trip with a cat
Cootie hates sharing the road trip with a cat

Even though he is made of materials found in Walmart’s craft section, he is worth more than gold.  He represents the bond between my mother and me.  If I have a daughter, Cootie will be placed in her care, to make sure she is safe and watched over.  Somehow, through his misaligned eyes, she will be watched by me and my mother.  It gives me comfort to know that Cootie will be with her in the future.

After I die.  I still need him for a while yet.  He’s my Cootie, my “one thing.”

Think about it!  Do you have one material possession that means more than the others?  If so, comment below!

My Week Without Splenda

untitled 

“All men are created Equal. Some just have more Splenda.”
Jarod Kintz

For months upon months, I have been dealing with stomachaches in the afternoon and evenings.  Sometimes they just gave me discomfort, other times they were incapacitating.  Stress?  Lack of sleep?  I tried removing dairy from my diet.  I tried removing gluten.  I tried removing wheat.  More protein – nope.  More fiber – nope.  I tried taking out everything, one by one for a week to see there were any changes.  Everything…except…sucralose.

Some (or everyone who knows me) may say that I use too much Splenda.  I use it in coffee, to top cereal and toast, in yogurt, in teas, in oatmeal, in protein shakes…in everything that should be sweet or sweeter.  Let’s just say I don’t buy my sweetener at the grocery store.  I buy my box at Costco.

So, I thought it was time for my hardest experiment yet to find what was causing my tummy troubles.  With overwhelming support from Fiancé, I decided to go natural.  Fiancé decided to sacrifice his precious saturated fat (pizza and ice cream – his two main food groups) for a week.   I live on a diet with little to no saturated fat and a lot of sucralose.  He lives on a diet with tons of saturated fat and little to no sucralose.  We could help each other.  With a heavy heart, I bought agave nectar and decided to live a life without the yellow packets – for a week.  The week was negotiated with Fiancé.  I started at one day.  He said two weeks.  Three days, really, was all I needed to know.  He disagreed.  “Two weeks”, he urged.   Then when his sacrifice was thrown in we both agreed on a week.

Day 1
I had tried a teaspoon of agave syrup on toast and was uplifted by the sweet experience.  The problem with agave syrup is that it is 60 calories a tablespoon, whereas Splenda is zero.  So, I knew I would be cutting back on sweet things for the most part in order to not up my daily calorie intake to a billion.

I woke up and prepared my mandatory morning coffee.  A little history for you, Reader.  I have discovered that I cannot have more than two cups of caffeinated coffee a day.  One to bring me to life in the morning, and perhaps one for social enjoyment strategically placed after 2pm and before 4pm.  Coffee at any other time of the day makes me crash.  The morning cup is not only the reason I can think, work out and dress myself, but it also serves as the perfect start to my morning.  It tastes really good, and helps me relax and get energized at the same time.  It is a ritual that is part of my morning “me” time.

I prepared my coffee in the usual way, except instead of adding my sweetener, I added a teaspoon of agave nectar.  I was excited to experience the new depth of the flavor.

It was excruciatingly horrible.

I made myself drink it, because I needed the caffeine.  Taking my caffeine like medicine really made me angry for the rest of the day.

Then I was hungry.  All day long.  Later that evening my stomachache was really bad.  I had to leave a family dinner early and crawl right into bed.  Which made me more angry.

Day 2
I felt a full tablespoon of the agave was the ticket!  Anything to make it sweeter.  Morning coffee excitement ensued.  I tasted it and threw it out.  Even worse.  So, very, very bitter.  It’s bitterness reflected my soul.

Without coffee, my day was overcast by a migraine.  Starving all day long.  Being hungry and decaffeinated made me very angry.

Stomachaches returned on schedule in the evening.

Day 3
Decided to not even try coffee.  Hope is lost.  So very, very tired.  Need…coffee.

My headaches came like waves.  Midol Extended Relief gave me some caffeine, and some relief, although not extended.

Later…after a day that only included two spurts of energy, I thought that maybe I could have a Vitamin Water Zero to help my sluggishness.  But then I remembered how watered down they taste…without a couple packets of Splenda thrown in.   I left the water aisle in despair.

Fiancé took pity on me.  He bought me a very small and expensive box of Truvia.  But will Truvia skew my results?

My stomach pains came back, but much later in the evening.  I may have been too tired to really notice.

Day 4
I don’t care.  I need coffee.  I prepared my coffee with Truvia.  Not bad!  The caffeine heightened my senses.  Ah, sweet nectar of the heavens!

My day was full of energy and bliss.  Every boring task was overcast only with bubbles, happiness and unicorn rainbow farts.

Stomachache came back, but not really until the middle of the night.

Day 5
Truvia infused coffee provided the necessary start for my day, but now that I am back on my caffeine, the high wasn’t as high, but I didn’t care.  I do miss Splenda.  So many things I cannot eat without it.  Nonfat plain Greek yogurt.  I ruined a Siggi’s cup by adding agave.  It was a $2 cup of Icelandic strained yogurt, a treat I get rarely.  It might as well have been a billion dollars!!  I exaggerate, but not really if my statements reflect my emotions on food spoilage.  Fiancé absentmindedly asked me if I wanted some Greek yogurt while we were getting groceries.  Fire came out of my eyes and I said, “Why don’t you just ask me if I want to eat a tub of sour cream?!?”

Fiancé wept, but he was so very weak it was a half-hearted weep, to tell you the truth.  No, it wasn’t because in my body, a decrease in sucralose results in an increase in bitchiness.  I knew it wasn’t my fault because I could hear, although barely, “Pizza…pizza…ice cream?  Pizza….”

Day 6
I have learned that agave on toast and tortillas is not bad.  Also works on top of dry fruit sweetened corn flakes.  On my other favorite foods – disaster.  Spent Day 6 starving.  Had a protein shake, which usually takes a fair amount of Splenda to make it taste like a milkshake.  This time, I used only three Truvia packets and frozen fruit.  My tropical vanilla protein milkshake…could have been sweeter.

My stomach churned all night.  Results inclusive.

On the other hand, Fiancé is noticeable losing weight without exercising.  Just simply by cutting out anything more than 6 grams of saturated fat a day.  His sugar intake has increased dramatically, but no effect on his ability to look and feel great.  I hate him and pity him NOT for his pizza cravings.

Day 7
I have no clue what to do.  But, my dwindling inventory of Truvia indicates that I should go back on the sucralose.  I am not free from stomachache in the evenings that last through the night and now into the mornings.

On my last day without Splenda,  I had a delicious New Start Garden Egg White Omelet from Goldie’s Diner (shameless plug).  Lots of food on the saltier side instead of the sweeter side.

My usual stomachache came back and it was a bad one.  It started at 7pm and woke me up a couple of times.

Closing Thoughts
The week provided an incredible test of will.  I feel proud of myself.  Cutting out sucralose was never an option to me before!  It was my vice, and I was okay with that.  I love living the sweet life.

Moving forward, I am going to use Splenda, but not nearly as much.  I will be cutting back.  Fiancé says that his pizza and ice cream will become special treats instead of something he eats regularly.  If Fiancé and I fall into our old habits, it will be his fault.

Obviously.

Back East

NM Landscape

“How often have I lain beneath rain on a strange roof, thinking of home.” 
— William Faulkner

Three and a half years ago, I left my home state in the firm belief that I would not move back again.  Heading west, I knew I would return to New Mexico for visits, but that was it.  Now I am back in the Land of Enchantment for the foreseeable future.

The time I spent in New Mexico while living elsewhere was richer.  I became more aware of the differing cultures and my own roots.  Even the desert landscape seemed more vibrant.

I moved away for the sake of following opportunity, and I have no regrets for doing so.  I feel everything happens for a reason and I leave it to God to direct me to rewarding successes and mistakes to learn from.  I returned for family at a time when my family faces new challenges and my last opportunity came to an end.

The decision to move back was not easy emotionally, but it was an easy one to make.  Fiancé and I knew it was time to start over, to be with family and carve out a new path.  Time to step back, take stock of what is really important, and start again from a firm foundation.  It is also a time to look forward  years down the road and think of what we would regret more – moving closer to family or staying away?  Staying apart from family still kept our thoughts with them.  We couldn’t help but think that we should be helping, doing something, if only by being closer.  Sleep was difficult and the feeling of being orphaned was prevalent in each day.

There is a lot to do and figure out.  A lot of work ahead of us.  We are not home quite yet, at least geographically.  What I have developed is a sense of home apart from a place, but in a person.  Fiancé is my home, no matter where I am.  We’ll move forward together…no matter where we move.