Saw my therapist again after a long respite on Tuesday.  I had been in such a wonderful place for so long that I didn’t feel the need.  However, I began to experience irritation at strange things, so thought, “Better call LeeAnn!”

We went to a Nuggets game, one of our favorite activities, on Valentine’s Day.  The guys sitting behind us talked, loudly, throughout the game, about everything and anything BUT the game.  I heard them say that someone had given them tickets, so it was obvious that they didn’t care about watching.  Nothing stopped them, even my nasty looks! 

We had to leave the game early because I was experiencing some breathing difficulties.  So, the entire evening was a disappointment.

Another problem I am having is that the smell of food is often repugnant to me.  I fail to understand it, but it is nauseating.  I cannot help but wonder if these two factors are related to the fact that I am unable to speak and eat.

At any rate, the visit to LeeAnn was productive and satisfying, as always.  She is very knowledgeable, having extensive experience with ALS patients and their families.  I asked her about Hospice. 

I want to have all the information I need to make wise decisions.  Perhaps the most difficult part of this journey is knowing that my illness and resultant decline, is making people I love so very sad.  My husband, and my children, particularly.  But I know that this is part of life, and so I must accept the fact that I am fortunate to be so loved.  Many friends following this blog are sad, as well.

If I could wave a magic wand and have any of my wishes come true, my first wish would be that everyone who loves me and those who follow this blog would endeavor to be in the present moment, love themselves and their beloveds.  They would appreciate each gift that life brings and maintain a forgiving soul.

So much time in our lives is wasted in anger, regret and depression.  I pray that I am an example of living and appreciating the present moment, knowing that we have no control over the past, or the future.  It is said that ‘People plan and God laughs.’

I am interested in gathering as much information as I am able, in order to be prepared for the future.  However, abiding by my own advice, I am aware that I have no control.  My fate is in God’s hands.  Recent developments reinforce that awareness.

As my diaphragm muscles deteriorate, I am needing to use the bi-pap more often.  How rapidly this will progress is unknown, but, as this happens, I must accept that I am inching toward the day when I am told that only a tracheostomy and ventilator will keep me alive.  And, that is the point where I shall say, “No more.”

In acceptance, there is peace.  For those of you dear readers, who follow these posts, you know that  I have a spiritual belief system that tells me that the soul never dies, and that we will come back in another incarnation in order to learn more.  The goal is to become more spiritual and more like God.  My belief system is based on Ernest Holmes teachings, in the Science of Mind, and Emanuel’s book.

While my faith is strong, some days are really difficult, like today.  A trip to my acupuncture doctor was disappointing.  As I drove to his office, I had a major saliva attack in the car.  My salivary glands continue to produce and the difficulty I have swallowing makes it hard to manage.  I have a machine at home that works like the one at the dentist’s office.  However, I can never predict when one of these attacks will occur (I have had three, so far).  Only one has occurred while I am at home.

Dr. Gao was concerned to find me very weak.  He told me that he would not use many needles today because it is not advisable when the patient is too weak.  I had difficulty breathing while lying on the table, even though I was propped up on pillows, so my treatment was cut short.

I struggle to find a balance as I write truthfully, about my experience.  I do not want to linger with the negative, but I do want to be honest.  Perhaps it is best to simply admit that this is very hard and I am getting very weary.  At the same time, I am grateful for all the support I have; a loving husband, wonderful children, great grandkids and countless loyal friends. 

As I pray for courage and inner strength, I am aware that Sunday is my seventieth birthday.  It has been an interesting life.

On Friday, we decided to see a movie.  As usual, I was running late.  Frustrated with myself, I grabbed my fake Uggs and jumped into the car.  I was irritable!

I pulled and pulled and finally one boot came on.  Dear husband said, “Barbi, I will help you when we get there.”  I kept on.  Stuck my foot in the other boot and pulled and pulled.  I was thinking, I know that my hands are weak, but this is ridiculous!

All the handicapped spaces nearest the theater were full, so Chris dropped me off while he went to park.  I got out of the car and realized that my feet felt funny.  I looked down and saw each foot pointing out; the boots were on the wrong feet.  I cracked up!  I was walking toward the theater thinking, OMG, no one around me knows how funny this is!  Looking down toward my feet again, I notice a huge spot of what looked like dried formula in a six inch round blob right in the middle of my coat!  OMG again!  Here I am, walking to the movies, boots on the wrong feet and a huge ugly stain on the front of my coat.  This, too, made me laugh.  I laughed at myself knowing what a big deal this would have been only a couple of years ago.

Rather than panic, I chose to laugh and I pulled my shoulder bag so that it covered the spot, walked to the door with my boots pointing outward and I smiled enjoying  my little secret.   The joke was on me and I thoroughly enjoyed it.  As I have said before, my behavior would be fodder for the writers on Saturday Night Live!  And self-deprecating humor has always been at the top of my list!

Last fall I wrote about an experience with my pulmonologist that left me shattered.  I was forced to look carefully at my feelings about health care professionals who would see me through my ALS challenge.  This update is more upbeat, I am thrilled to report.

I did change neurologists.  The doc who gave me a second opinion, soon after I was diagnosed, is kind, compassionate and a great listener.  Our personalities just click, and he knows intuitively what I need from him.  He touches, he makes eye contact and I trust him.

On my second visit to the pulmonologist, I found a much more caring individual.  He had recently recovered from pneumonia.  He was patient, waiting for me to type my comments and questions.  Because I was ready for him on this second visit, I was prepared to ask him very pointed questions since he had offered answers before I was ready, the first time I saw him.

I know that Chris wasn’t prepared for these questions, but it was good that he was with me to hear them.  I asked, “Since I have decided not to have a tracheostomy and ventilator, what will happen when that is proposed, and what will my situation be prior to that proposal?”  He answered, “you will be using the bi-pap all the time.  When you refuse the trach and ventilator, Hospice will be called, and you can go home.”  I asked, “how long before death will come?”  And he answered, “It will only be days.” 

I was surprised at how relieved I felt after asking those questions!  And, if he hadn’t paved the way for such an honest exchange, I have no idea if or when I would have been able to ask.  So, once again, I am surprised at the serendipitous nature of this journey.

A few weeks ago, I returned to Longmont for a cleaning appointment at my dentist’s office.  The cleaning experience was somewhat difficult, since my ability to have my mouth open for prolonged periods is hard.  The whole process of having instruments in my mouth, my overproduction of saliva and my proclivity to choking combined to bring my awareness that I would not be able to do it again in six months. 

My dentist has seen me through some tough times.  When I had to have a front tooth removed and an implant placed, I was devastated.  Upon first meeting him, I had to remove the temporary tooth, exposing a large gaping hole.  Tears streamed down my face and I was embarrassed.  He gently comforted me, patting my shoulder in the most tender way.

Over the years, we looked forward to my visits.  Seeing him and his assistant was like visiting old friends. After leaving my position with the City, in 2007, I kept going to him, rather than finding a new dentist, closer to home.

So, on this morning after my cleaning, when he came in to check my teeth, we were clearly happy to see each other.   As usual, we laughed and joked, with the mutual knowledge of my deteriorating health suspended invisibly between us.  When I got up out of the chair, I typed this message to him.  “I think this will be the last time I see you.”  He grabbed me, held me tight, and sobbed.  I cried with him.  After a few minutes, we walked out, arm in arm.  When we reached the main office, he whispered in my ear, “you take care, stay strong and I will pray for you.”

How many people are this fortunate?  This incredible man has been far more than just my dentist.  He has been my friend.  We had a special bond that has enriched my life.

A few days ago, I had a few errands to run.  Preparing for my outing, I shampooed my hair and meticulously styled it, applied make-up (a rare occurrance these days), and put on an attractive outfit.  In the past, this process would have taken 45 minutes; now it takes about 90.  But leaving the house, I felt almost normal.

I stopped in a boutique pet store to buy Mollie a buffalo bone, knowing that it would keep her busy for hours, keeping my guilt at bay, because I cannot walk her like I always did.  Like the dog in The Art of Racing in the Rain, she knows that I am fading.  I see it in her huge brown eyes, and I am sad.

When making a simple purchase such as this, I don’t typically bother to bring in my iPad to communicate.  I smile, nod, voice mmmm, and bye.  This time, the clerk asked, “How is your day going?”  I smiled and muttered, mmmmmm.  She said, “you aren’t feeling well, are you,” as she handed me the receipt to sign.  She followed with, “I hope you feel better.”  I shook my head from side to side without thinking, as if to say I won’t get better.  I wrote on the back of the receipt, I have ALS.  This stranger’s face fell.  Her eyes became so soft with compassion, and she said, “Oh Sweetie, I am sooo sorry!”  And, then, almost as an afterthought, she said, “well you look beautiful.”  I gestured “Thank you,” and walked out of the store.

I couldn’t help but think, “yes, that was always my intention.  Looking good was a prime motivator.  When I looked good, I usually felt good about myself and the world around me, and now the body that I constantly criticized for not being perfect, is failing me.  My focus has changed.

My focus has changed to what really matters.  The kindness that surrounds me and blesses my life is overwhelming.  Friends, family, doctors and many strangers have all exhibited loving kindness toward me.  There is so much love offered through words, a look, a touch, email, Facebook, everywhere.  I drink it in and it brings me contentment and happiness.  The peace that comes from this sustains me and I am grateful.

 

 

Life lessons are everywhere!  Especially these days while I am paying attention.

We were headed to Bend, Oregon yesterday for a long awaited visit with our son Quinn, his wife Sarah and our dear five-year-old granddaughter Kila.  Sarah and Kila’s being sick forced a change in plans, as I cannot be exposed to illness.  We were all so disappointed, but then the big snow came and would have caused us to stay home regardless.  I have come to believe that I must pay attention to these signs.

I have spoken at length about our “inner voice.”  This is the warning that each of us has, that I have come to heed, albeit late in life.  Whenever I fail to listen, I am reminded that when I ignore that voice, something happens that I regret.

Sting’s song, Every Step You Take, Every Move You Make, I’ll Be Watching You refers to our higher self, knowing whenever we fail ourselves.  When we speak of someone in a negative way, behave in a manner that we know is inappropriate, we have the opportunity to make a better choice if we only listen to that inner voice.

These days, my inner voice tells me that all is well.  I have come to feel like a small child, with my hand in God’s, as He leads me through my day.  I am thankful for this feeling which keeps me from being afraid most of the time.

Months ago, I bought the DVD entitled, So Much, So Fast.  It chronicles the life of Steven Heywood, who at 29, was diagnosed with ALS. Steven had lived a life without emotional or physical pain.  He had wonderful, loving parents, two brothers who loved him and plenty of money to provide a wonderful life for the whole family.  These were good people, truly blessed in their lives until his illness.  I was able to identify with so much of Steven’s process and his comments. 

He hated the whiny voice and unintelligible speech, as he was always funny, articulate and in the center of conversations.  Yet he maintained his positive attitude even as he lost the use of his hands, and his legs became paralyzed, as well.  Steven had the more typical type of ALS than mine.

Although my hands are losing strength, I am sill able to wash and dress myself, put on make-up, handle all my feedings through the tube, and feed myself applesauce and yogurt. I can hold a glass or cup, pet my animals, make the bed and Windex the stove and living room glass top tables.

However, I cannot tweeze my eyebrows or pluck an errant hair from my upper lip or chin.  Now THIS is very frustrating, but further proof that my priorities still have a ways to go.  Typing is only slightly more difficult, but holding my head up is a challenge.  Breathing is work at times during the day, and I am eternally grateful for the bi-pap with oxygen, which helps so much.

I am so grateful to Chris, with his loving kindness and understanding.  I am careful to attend to his needs as best I can, and suggest he slip out to a restaurant, skiing or hitting golf balls for a change of pace.  It is essential that he takes good care of himself, both physically and emotionally.  This man gives to me so generously, with his words, a touch, an offer to help and his abiding love.

When Chris helps by zipping up my hoodie, this formerly powerful woman is truly humbled.  It is another lesson.  None of us is so strong that we cannot let go at times and be vulnerable.  I would never have been able to do this without my illness as my teacher.

Having so little control these days, I have the opportunity to really let go.  And, I am surprised at my ability to do it.  I suppose I could fight it, but I trust in this process.  I know that I am exactly where I am supposed to be and that God is with me.  And so, in the midst of the most harrowing struggle of my life, I am at peace.  Thank God.

I went shopping for a wig with my daughter Kim last week.  Finding it increasingly difficult to style my hair, I am less inclined to fuss over it than ever before.  Patience and the desire to look great are waning, so I thought, why not get a wig?  That would enable me to look good enough in an instant; shake it out, pull it on and “voila”, ready to go anywhere!

We went to a great shop in Cherry Creek with a gazillion wigs of every imaginable style, length and color.  The owner brought us into a small cubicle for privacy while I tried them on.  I settled on a short one, close to my hair color and kind of shaggy…..a Jane Fonda look.  I wore it home.

Chris liked it immediately, or, at least that’s what he told me.  But, I think he meant it.  Agreed, Jane Fonda looking.

On Friday, I had to go to acupuncture and didn’t feel like doing my hair, so I wore the wig.

Dr. Gao is a very reserved Chinese physician who is a master at acupuncture.  Lately, he gives me a brief Chinese massage before he begins to place the needles.

I have been sitting in the massage chair since I had the feeding tube placed, so that he can place the needles in my neck and back, as I am now unable to lay on my stomach.

He began the massage and as his finger kept hitting the base of the wig, I thought, “Oh what to do?”  He must be wondering what that is…..he could massage my neck better if only I hadn’t worn the wig…..”Oh, what to do?”

These days I find myself becoming more and more free of concerns that have plagued me all of my life.   “How do I look?  Do I look fat?  I cannot allow myself to be seen doing this or that.”  What will people think, and on and on.  All of this now matters little to me.  Each day I am more free of concern about what people might think and it is so liberating!

And so, after considering my options for about a minute or two, I unceremoniously yanked off the wig!  He said, “oh okay.”  That was it.  No other verbal response to my giggle.  Nothing.  He massaged my neck and it was great.

When I moved from the chair to the massage table so that he could place the needles on my front side, I saw that he had moved the wig to my chair.  It looked funny sitting there on the chair. 

End of story.  Great massage, little grief from a minute of concern, and we moved on. 

The lesson for me is that I will not wait as long next time to do whatever it is that I want/need to do, for fear of being embarrassed.  I cannot go back and undue all the stress I experienced in my life while being uncomfortable, yet appropriate.  But I CAN share this with you, dear reader, so that YOU can choose comfort first, starting today!

On Sunday afternoon, the coughing started up again with a vengeance.  I worried that if I waited a day longer, it would be too late, so Chris drove me to the ER.

I brought my iPad, and tried to be as responsible as I could be in explaining my situation.  Chris is often my voice, and, of course, I appreciate his help enormously, but I know that I must stay as involved as I can, as long as I am able.

After an hour they brought us into a cubicle, handed me a hospital gown, and told me to disrobe from the waist up.  I wasn’t happy about this!  The nurse explained that they may be taking a chest x-ray which made sense to me.

She left us then, drawing the curtain around us.  Once I changed into the gorgeously attractive faded, wrinkled hospital gown (gown, a misnomer if I ever heard one!), I settled in comfortably on the bed, reading the paper.  Chris sat beside me reading his Kindle.  We came prepared!

After about another hour, I had to use the ladies room.  I got up, walked outside the cubicle into the larger room.  While clutching the gown together, as it was open in the front, I met a young man dressed in blue scrubs.  I forgot for a moment that I am unintelligible.  I asked, “Can you tell me where the ladies’ room is?”  Of course he said, “what?”  But I realized that there was a look on his face while he gently touched my shoulder that said, whoa, this woman has mental problems!  I immediately called Chris, and at the same time the young man (who actually was the physician on call) went to the desk and said, “this lady is looking for her room.”  I though, Oh my God!

Clearly, what he perceived was that I was nuts, whacky, out of my mind!  Chris immediately said, “she needs the ladies’ room.”   And, with that, directions were given along with a request for a urine sample.

I went into the ladies’ room and cracked up.  As sick as I was, this incident tickled me.  I had correctly read the doctor’s mind, and it really struck me funny.

Later, when he came in to examine me, I wrote on my iPad, “you thought I was bonkers,” and while he strongly denied that, we made eye contact, and we both knew I was right.

This illness has given me so much learning.  I have found myself in such ridiculous situations, knowing firsthand what others live with on a daily basis.  As I have lost abilities, my illness has caused me to present myself as a deaf person,and a person with dementia.  I cannot help but wonder what will be next!

 

A week ago, I started with a cough that reminded me of previous times when I had aspirated liquid into my lungs.  When the throat muscles become weak, and swallowing is difficult, choking often occurs.  I never know if and when those choking experiences has led to aspiration.

Knowing the symptoms so well by now, we went to my PCP immediately.  He heard liquid in my lungs, called it aspiration pneumonia, and gave me an antibiotic.  In the past, he’s given me a stronger antibiotic, a steroid for the swelling and both have worked perfectly.  However, to my dismay, this time he ordered something milder.

When we filled the prescription, I opened the bottle and found the most enormous pills I have ever seen.  (Reminder to self: tell doc next time I cannot swallow a brick)!  So Chris crushed them for me and I took it with applesauce. 

If you have ever tasted penicillin, you know how disgusting it tastes, and trust me, it is worse if you are trying to swallow countless shards of the stuff.  It was an exercise I hope to never repeat.  After a few days of gagging and tearing, I decided I must put it directly into the tube and avoid having to taste it, which was an experience in itself.

By Saturday night, I was coughing again, uncontrollably.  Chris brought the bi-pap downstairs so that I could get some relief from the oxygen and still watch the playoff game.

Now, the bi-pap has a face mask that goes over your nose and mouth.  It is held into place by straps that go around your head  so that no air escapes.  It is not a pretty sight.  Needless to say, my hair sticks out all over, even though I try to keep it from looking like I stuck my wet finger into a light socket.

Once I settled in, hoping that I’d get some relief, I found myself reminiscing about other Saturday nights with Chris.  Not so many years ago, but now it feels like in another lifetime, we would enjoy a candle-lit room, the fireplace adding warmth creating a lovely atmosphere.  We enjoyed great conversations and laughed our heads off watching Saturday Night Live.

On this Saturday night, looking like an alien from outer space, remembering those lovely romantic evenings, I was able to see the humor in my situation.  All of the concern and discomfort dissipated as I completely let myself go and enjoy the ridiculousness of the present scene. 

By simply changing my perception, I was successful in creating a whole new and truthful reality!  All those years ago, I could never have imagined our future.  I would have been perfectly made up, hair just so, a cute outfit on, all to show my sweetheart how attractive I could be.  And, on Saturday night, there wasn’t even a hint that I was the same person. 

But this, I know is true.  The love that my husband feels for me now, is at a much deeper and truer level than ever before.  Neither of us could have guessed that our devotion would expand exponentially, teaching us what love really is.  Real love crushes the boundaries and limitations of the superficiality of romance.  It is deeper, truer.  And, to experience that kind of love is a gift like no other.