Conflicting Viewpoints

With my collarbone healed and my right arm free from the sling, I started writing daily notes about Mark’s progress. I recorded his red and white cell counts, temperature, heart rate and respiratory pressure support. I did this so I could recognize the improvements no matter how small they might be. It helped me stay focused on just parts of the recovery instead of thinking about everything Mark needed to overcome.

Mark’s white cell count was high and since the increase indicates an infection, they did a body scan. Mark’s liver was abnormal. With his weakened immune system, they treated the liver infection aggressively with a powerful intravenous anti-biotic because they were worried the infection would spread quickly to other organs, causing death. Within a week his white cell count went from 50,000 down to 11,000, which was an answer to our prayers. He was schedule be on this medication for two weeks with the goal range of 5,000 –10,000. In my mind he had almost reached the elevated end of the goal range.

With high blood sugar levels, Mark was now on insulin and with a large blood clot in his right leg, he was getting heparin. He was now in a floatation bed to help with the blood clot problem. There were so many health concerns that at times I thought I’d lose my mind from the anxiety. I found it helpful to write down the worries and the normal or goal range for his white and red cell counts, heart rate, temperature and the respiratory pressure support. I tracked the numbers daily. I recorded when they did a test and then the test results. Gathering all the information I could helped me understand the process and what was happening with Mark’s body. I recognized and celebrated every little miracle that happened.

Mark’s low red cell count was a cause for concern because it could indicate internal bleeding, bone marrow failure or kidney disease. Within this same week his red cell count increased from 3.3 to 3.8 million with the goal range of 4.0-4.5. I saw the numbers as a great improvement.

I also noted on one day I saw Mark move his finger, on another he held his head up slightly to cough and another time he yawn. I rejoiced in every movement and recorded them in my journal. Unfortunately, Mark wouldn’t do these things when the doctors, nurses or therapist were there so my joy had no merit by their standards.

Without meaning to, I annoyed the doctors and nurses with my records and positive notations. It became a daily routine when the doctor walked into Mark’s room with the hospital records and stated, “No change.” I would then read from my records and report what I had witnessed. The doctor then left the room as frustrated with me as I was with him. We definitely did not see Mark’s progress in the same way. He never specifically said, but it was written all over the doctors face, who was I? A young 32 year-old spouse, uneducated in neurology, who had the audacity to question and challenge his words. I was truly grateful for his knowledge and skills which saved my husband’s life, but I didn’t appreciate his bedside manners. My observations were not taken seriously. The doctor was the medical professional, reading and understanding what the results of many tests were telling him. However, I knew Mark and was the one spending many hours with him day in and day out. I felt his spirit and knew he felt mine. It was so frustrating that what I witnessed had no value with the professional caregivers. I wanted us to be on the same team, working together in Mark’s behalf, but instead it felt like we were on opposing teams. There were a few days I was tempted to throw my shoe at the doctor as he walked out the door. Equally frustrated at me, I’m sure he was tempted to stitch my lips together.

The day after my 32^nd birthday, they did a Brain stem Auditory Evoked Response (BAER) test which measures how the brain processes the sounds you hear. The BAER test records brainwaves in response to clicks or other audio tones that are played. The test can help to diagnose hearing loss and nervous system disorders in people who are not able to participate in a standard hearing test. While Mark was lying in bed, a technician placed small electrodes (sticky patches with wires attached) on Mark’s scalp and earlobes. The electrodes were connected to a machine which recorded his brain activity while he heard a series of clicks and tones played through earphones.

I was elated as I watched his brainwaves being recorded in black on the continuously fed white sheets of paper. He was reacting to the noise he heard, which confirmed my belief that he could hear and his brain was processing it. My spirit jumped for joy with each spike his brain activity made every time he heard one of the clicking sounds or other tones. The printout of the test results was something tangible which showed the spikes. I didn’t know what a normal or abnormal test looked like, but the report appeared wonderful to me. I was excited to hear what the doctor would say. I was positive it would be good news.

The next day the doctor told me that the test indicated significant damage to the brain stem, which is responsible for breathing, sleep patterns, hunger and thirst, blood pressure, heart rhythms, and body temperature. It regulates the central nervous system. “Mark has bruising and injury throughout all parts of his brain, but the most severe damage is to the brain stem. When you go to sleep, it’s the part that wakes you up. With the amount of damage he has, I don’t expect he can ever wake up.”

A chill ran up my spine while a flashback flooded my mind. After I gave birth to Katie, I hemorrhaged and had to have an emergency surgery. When I was coming out of my sedated state, I heard doctors talking about all the blood I had lost. I felt one of them pull down the bottom part of my eyelid as he commented on how white the area was, which should be pink in color. Inside I panicked, but could not make my body move. I worried they thought I was dead and I felt helpless to show or tell them otherwise.

With this doctor’s words, I felt Mark’s terror. He, too, was trapped in a body unable to respond. I followed the doctor as he left Mark’s room. “Please don’t ever give reports like that at his bedside again. I prefer we meet in the conference room to have these discussions. After all, the BAER test confirms he can hear, right?”

“Yes, he can hear, but I don’t believe he understands a word that’s said. However, if it makes you feel better, we can meet in the conference room from now on.”

He Lives!

The spring season is the transition from winter into summer. It’s a time of growth and renewal of life; when plants and trees which have been dormant for a season regain life and begin to bud into a lush, green, beautiful plant. The timing is perfect for the event of our Savior’s resurrection. Springtime is usually my favorite, however in 1991, it was a lost season because Mark literally slept through it in a coma after our horrific car accident.

I was grateful Mark appeared to be in a safe and sheltered place, unaware of the hospital surroundings, while I struggled to hold myself together. Helpless to make Mark better, I sat next to his bedside in the Intensive Care Unit at MacKay Dee Hospital in Ogden, Utah. My right arm was in a sling and I wore a brace for my broken collarbone, but I hardly noticed the pain—it was nothing compared to my broken heart and worry. Mark, lying perfectly still and quiet, was unaware of the loud noises from the monitors, or the shunt inserted at the top of his head draining excessive fluid from his brain. A feeding tube entered his nose and ran down the back of his throat into his stomach, which would later be surgically placed directly in his stomach. Other tubes were placed to empty his bladder and bowels. The hardest tube for me to observe was the one located in an opening in his neck through his trachea to provide an airway and to keep his lungs clear of fluid. The vacuum sound while the secretions were sucked out through his tracheotomy made me cringe every time, but Mark laid peacefully in a coma, unaware of any of the tubes that kept him alive.

Mark was comatose for three months and most of the time I felt like it was a blessing because he had so many health issues to overcome. Besides his Traumatic Brain Injury (TBI), he had broken ribs, a collapsed lung, and infection in his liver. For circulation and to prevent blood clots, Mark laid securely strapped on a bed unlike any I’d ever seen. This bed tilted to the right side and gradually moved to the left, taking three minutes for each continuous rotation. Most of the time, Mark seemed oblivious to the fact that I was there or of any other visitors that came. It was nearly impossible for me to focus on T.V. or a book, so generally I sat by his bedside in prayer, hoping to see some improvement while watching the monitors. Time passed slowly; all I could do was watch, pray and ponder. I thought about how we met and our dates, our wedding day, our home, and the birth of our two children. I thought about our times with special friends, family members, and vacations. I relived all the fun and important events as the video recorder in my head played back the past fourteen years we’d known each other.

We lived in Sandy, Utah, which is sixty miles from Ogden. I couldn’t leave Mark alone to go home, it was too far. I imagined he’d wake up and wonder where he was and what was happening.  After a couple of long weeks with no sign of improvement, my family came up with a plan. My brothers, Mick, Don, Steve and brother-in-law Klint, each picked a night which worked best for them, drove to the hospital after work and stayed with Mark until the next morning. A Ronald McDonald House close by was available where they could rest and shower before going to work the next morning. This allowed me to go home on the weeknights to be with our two children, Christopher and Katie.

During the long three months Mark was comatose I wondered, where is he? I could see his body, but often his spirit felt absent. Peace radiated from him and there was a glimpse of heaven I felt in his presence. What will he be able to tell me when he’s conscious? I was certain it would be something special. I longed to hear his voice. There were some days when I felt his company for a short time and on a few better days our spirits were able to communicate through thoughts. I would talk to him and hear his reply in my mind or feel his comfort. It was an impressive, angelic form of communication and I cherished those moments, but I had no control over when or how it would happen. It was an unforgettable experience.

Often, I wondered if Mark was uncertain in which place he belonged or if he wanted to be in heaven, but felt obligated to stay. After six weeks I was exhausted and worried he might be hanging on to life for me and the kids, so I told him it was all right, we’d be okay without him. I didn’t know how I would manage, but felt if it was his time to go I would and could accept it. It was difficult to communicate this heartfelt message, but I didn’t want him trapped here only because I couldn’t let him go. It was a turning point for both of us and I believe Mark lives because he chose to. It would have been easier for him to give up the fight, but I’m so glad that wasn’t his choice. A few days after this experience there was a slight improvement in Mark’s infection, so I arranged for an ambulance to take him from MacKay Dee Hospital to Western Rehab which was located in Sandy, Utah and close to our home.

Mark’s ability to regain consciousness was a slow and gradual process which took several more weeks. At first he would occasionally answer yes or no questions by blinking his eyes once for no and twice for yes. We tested him often with obvious questions. As he improved he would whisper a word or two. One day I showed Mark a picture of Christ and asked him if he’d seen Him. He quietly said, “Yes.” Months later when he could talk in sentences he told of his experience, which he has written down.

“Just before waking from my coma, I thought I was walking the length of a long white hallway. Standing at the far end of the hall was another man about my same height. I say this because neither of us had to look noticeably up or down to look directly into the other’s eyes. He had a full head of pure white hair longer than shoulder length, and a pure white beard that was chest length. I presumed that man to be Jesus Christ. Thinking I had died and would be in His proximity for eternity, I walked up to within a few feet of Him and stopped. I asked for the location of Heavenly Father. He then pointed up and over His shoulder with His thumb toward the door behind Him and said, ‘In the next room.’ I reached around Him and opened the door. Before seeing anything in the next room, I awakened from my coma. I wish I’d known then how short that meeting would be; I would’ve liked to have spent more time with Him.”

As Mark related this experience to me, I knew it was true. During his months of unconsciousness, I knew he was in a special place feeling peace and contentment. I believe there’s more to his experience than he remembers and appreciate the comfort this memory brings to him. It brings comfort to me also; not only does it reassure me that Christ is real and knows each one of us, but I believe that the doors were Mark’s choice and the door he chose brought him back to me. He loves to relate this experience to whoever will listen. Remarkably he tells it using the same words. Since his TBI, Mark has short term memory loss, meaning he can’t remember who he’s told or the words he used. Nevertheless, he uses nearly the same words each time. This confirms to me that Mark’s experience was real and he was given the memory of it and the words to share it, not only to bring comfort to himself, but to touch the lives of others.

By this experience and others, we know Christ lives! He is resurrected. We will return to His presence, where joy, peace and comfort will be found. We were blessed to survive the shocking car accident and we were blessed again by this marvelous experience. We share it along with a beautiful rendition of our favorite hymn in celebration of His resurrection. Happy Easter!

<p><a href=”http://vimeo.com/29685920″>I Know That My Redeemer Lives</a> from <a href=”http://vimeo.com/user8691070″>INTO THE LIGHT Journal</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

 

Jon M. Huntsman’s Story

Information found on the Huntsman Cancer Institution Website:

The story is all too common: a man—a husband, brother, father, grandfather, and friend—is diagnosed with cancer. He seeks treatment, and doctors do what they can within their resources to save his life. He looks to his loved ones for support and encouragement. His cancer is treated successfully and he waits, hoping it will not recur.

While the narrative is common, it happened twice to an uncommon man: Jon M. Huntsman. Mr. Huntsman is chairman and founder of Huntsman Corporation, a multinational chemical manufacturing and marketing business with world headquarters in Salt Lake City, Utah. Through his cancer diagnosis, treatment, and recovery—which took place at top facilities across the United States—he felt a void in cancer care. “It felt impersonal, and for a disease in which treatment is often ongoing, it took place in environments that were cold and medical, places less conducive to healing.”

During his journey to recovery, Jon M. Huntsman and his wife, Karen, committed themselves to advancing cancer research and care for others, including the atmosphere in which that care takes place.

In 1995, the Huntsman family pledged $100 million to construct a state-of-the-art cancer center in Salt Lake City. Shortly thereafter, the Huntsman’s pledged another $125 million. Almost two decades later, Huntsman Cancer Institute and Hospital is world-renowned. The individualized care patients receive from multidisciplinary teams of doctors, nurses, radiation therapists, and pharmacist’s helps heal their bodies. Social workers and support groups help patients keep their spirits strong, and a wellness program helps them maintain fitness and good health with diet and exercise appropriate to their condition during treatment and beyond.

Huntsman Cancer Institute’s mission is to understand cancer from its beginnings, to use that knowledge in the creation and improvement of cancer treatments, to relieve the suffering of cancer patients, and to provide education about cancer risk, prevention, and care.

*****************

It seems as though cancer touches every life, if not personally, then through a family member or friend. Nobody wants to hear the “C-word” diagnosis, and when I first heard my daughter Katie had it, I was filled with fear. I realize thyroid cancer is less serious than many other kinds of cancer, but it’s still alarming especially when it’s spread to lymph nodes. It’s comforting to know Katie is getting treatment at one of the best facilities.

I’m so impressed with the doctors, nurses and the beauty of this facility. I’m grateful for Mr. Huntsman. His generosity and passion for finding a cure for cancer made me curious about what drives a billionaire to donate so much of his wealth to this cause. My research only made my admiration grow for this man. His donations of more than $1.2 billion made him dropped from the “Forbes 400” in 2010. The world has 1,200 billionaires and he is one of only 19 to have donated more than $1 billion. What a remarkable man!

While researching I came across this six minute interview,  published on Nov 30, 2012. Jon Huntsman Sr. talks about his childhood growing up broke in Blackfoot, Idaho and how his goal now is to find a cure for cancer and die broke doing it.

Other cancer survivor stories can be found on the Huntsman Cancer Institute website, “Survivor Stories”, along with lots of other helpful information on cancer.

---

 Related Articles:

Let Go of the Things You Can’t Control

Feeling Lucky

The Benefit of Learning Centers

---

 

Feeling Lucky

Nestled in the beautiful Wasatch Mountains just above the University of Utah Hospital is the Huntsman Cancer Institute (HCI). The front of the hospital is nearly all windows that overlook the Salt Lake Valley. Not only is this a beautiful hospital with breathtaking views, it has great reviews. I add mine to the thousands that are already out there.

I had never been to HCI until this week. Our daughter Katie was recently diagnosed with thyroid cancer and chose to have her surgery at HCI on March 5, 2014. As we drove up to the hospital into the circular valet parking area I was immediately impressed with the appearance of the facility. It was classy, warm and inviting. It did not resemble any hospital I’d ever seen and I believe I’ve seen every hospital in the Salt Lake County. As Mark and I entered into the main lobby area it felt spacious and opened. There was a gorgeous seating area, with nice comfortable furniture, an information desk on one side and a grand piano on the other. A beautiful staircase of cherry wood and steel took you up to the next floor or you could choose to take the elevators which framed with marble. I thought I had walked it to the finest hotel in Utah.

Katie’s surgery was on the third floor. The waiting room had a beautiful view of the valley as did all six floors. The waiting room was decorated with several shamrocks hanging from the ceiling and placed on the walls by the check-in area. The shamrocks added a lucky charm to the room and I said, Katie, don’t you feel lucky to be treated in this place?” She chuckled at my question.

As Katie was checking in, I noticed a plaque “Cancer Is So Limited—It cannot destroy love.  It cannot shatter hope.  It cannot corrode faith. It cannot destroy people. It cannot kill friendship. It cannot suppress memories. It cannot silence courage. It cannot invade the soul. It cannot steal eternal life. It cannot conquer the spirit.”

I showed it to Katie, inspired by the sentiment that cancer cannot take away what’s most important. As we sat for a few minutes waiting to be called into the surgical waiting room, I decided it was the perfect time to give her my gift. She laughed as she unwrapped the gift and stated it was the coolest T-shirt she’d ever seen.  Back in the surgical waiting room I laid the T-shirt over her blankets so the good luck charm would influence her and the doctors. She was a good sport about it and it made a fun conversation piece for the long wait.

The surgery went well, however the cancer had spread to at least two lymph nodes, so those were removed with several others that surrounded the two infested lymph nodes. It was almost a three hour surgery with another hour in recovery before she was wheeled into her room.

What a welcome sight she was for Eldin, Mark and I. It seemed like we had waited forever. Her color was good along with her spirits. She was relieved as we all were that the surgery was behind her now.  The nurses were as wonderful as the doctors. They welcomed her to Hotel Huntsman with narcotics and took very good care of her. The following day she was released to come home.

The rooms were spacious and comfortable. Check out the beautiful molding in the bathroom. There is also molding around the ceiling. What an amazing place to treat a dreadful disease. Thank you, thank you Jon Huntsman Sr. for a beautiful facility and a caring staff. You are one of my heroes for doing an awesome job. I’m feeling lucky for my daughters successful surgery!

---

 Related Articles:

Let Go of the Things You Can’t Control

Jon M. Huntsman

The Benefit of Learning Centers

---

 

Elijah’s Story

Written by, Silvia Caswell

My husband, Elijah, had a slip and fall on icy steps while working outside the week before Thanksgiving, 2013. He hit his head on the stairs and we think he was unconscious for about 10 minutes.

When he came to, he was completely disoriented and his speech was slurred. No one actually saw Elijah fall because he was outside by himself. He was able to call a co-worker who found a work colleague who lives in the area to come and pick him up. He didn’t know where he was so he looked on his iPad for the location. He then could tell the work colleague where to find him. He didn’t remember what car he drove or where he had parked. He was immediately taken to the Emergency Room to be evaluated. He had a severe headache and the CT scan showed no bleeding. He was released from the hospital with a simple concussion and we were told that he would be better in less than three weeks.

Elijah is 28 years old, so he’s in pretty good health otherwise. At home, my kids and I began noticing that he had some issues with confusion, short term memory recall, inability to read out loud, and his balance was severely off. His headache was unbearable and we returned to a bigger trauma center ER to have his pain managed because it was out of control. Again they checked him with a CT scan, but no bleeding. We were sent home and referred to a concussion specialist at the same hospital.

After two hours of neurological testing, the concussion specialist put Elijah in the “severe concussion” category. Again they believed that he would get better soon and that we would be back to normal quickly.

A few weeks after the accident, and with each visit to the doctor, we began finding more problems. Memory recall was pretty poor, disoriented to time and place, headaches out of control, and he began falling. Our doctor then decided it was best to keep him supervised at all times because he had driven to a nearby fast food restaurant and left the children at home by themselves (ages 5 and 3), and had no recollection of ever getting there, ordering, and driving home. Now I hide his wallet and car keys so it won’t happen again!

Long story short… we’re two months out and he has fallen down our stairs at home three times. The last time, a few weeks ago, left him unconscious. The doctor believes he re-concussed himself. Also, he developed right side weakness, and his symptoms continued to be severe. So far he is seeing a neuro-psychologist, two neurologists, one cervical physical therapist (to help with the limited mobility he developed from being in so much pain constantly), and a balance physical therapist. He was then moved out of the concussion spectrum and into the “mild to moderate traumatic brain injury” category.

All family members have been highly concerned about Elijah and it has pretty much turned my world upside down. We have 3-5 medical appointments every week. I had to quit my job at the hospital (ironically enough I worked in Shock Trauma ICU, where we get these types of patients constantly), to be able to stay home with him. We have three kids (ages 5, 3, and 11 months), and they know that sometimes daddy’s brain plays tricks on him (that’s how we deal with his confusion), and that he needs lots of rest in a dark, quiet environment so his brain can get a chance to get better.

We have friends and family that help us tremendously by watching our kids when we need to go to our appointments. It has been a huge blessing. It is overwhelming to go to the hospital that many times per week and sometimes I wonder if I have the strength to keep up with everything. I am a huge exercise fanatic and exercise 5-6 days/week, as well as eat healthy. Most of the time I get up very early to do it because I need the energy to keep up with our small kids, tending to my husband and taking him to various places (obviously, he cannot drive).

I am currently attending college and am preparing for taking the MCAT this summer and applying to medical school later in the summer. It’s definitely thrown everything off track, but I have learned to be disciplined and schedule everything in, even workouts. I feel that if I do something to help myself be a better person every day, then I can take care of everyone else in a better way. I have had a past history with severe depression so I always need to keep myself in check.

The results from Elijah’s last trip to the  neurologist where further neurological testing was done, show we are looking at another 3-6 month recovery. His physical exam did not correlate with his MRI, so we have an MRI/MRA scheduled in a couple of weeks. He will go under general anesthesia for the procedure because he does not tolerate the MRI machine noise at all (we found out the hard way). The doctor thinks he may have a microscopic bleeding that was not caught in the CT scan or a regular MRI.

I appreciate your blog and I am grateful for finding other caregivers who are going through a similar situation. Thank you!!!

-Silvia

Thank you Silvia for writing Elijah’s story. Best wishes for a full and speedy recovery.

Tips For A Successful Doctor’s Appointment

Communication is the key to a successful appointment. Have you ever been frustrated when the doctor leaves the room because you forgot to give him or her some important information? Do you think of questions you regret not asking—leaving your doctor’s office dissatisfy?

Your relationship with your doctor should be a partnership. The better you are able to communicate your needs and understand your options, the more productive your appointment will be and the more likely you are to get the necessary treatment. The time you have with your doctor is brief—if you’re lucky you get fifteen to thirty minutes.

Preparation will help you make the most of your appointment—and that anxious moment in the exam room as you wait for the doctor to arrive is not the best time to begin preparing for your visit. I’ve listed some steps I like to take before seeing the doctor.

1)  Write down all your symptoms, noting when they started and whether they get worse at certain times of day or in certain situations. The more accurately and completely you can describe your symptoms, the more likely it is that your doctor can identify your health problem and prescribe an effective course of treatment.

2)  Research your symptoms. The more you learn about the possible causes of your symptoms—and what your treatment options may be—the better equipped you’ll be to discuss your care with your doctor and understand his or her instructions.

3) Write a brief outline of your medical history, and list all medications you’re currently taking. Always keep a copy of the history and medication list to use at future doctor appointments.

4)  Learn all you can about the procedure. If you’re likely to need a medical procedure—whether surgery or a diagnostic test, such as a colonoscopy or mammogram—before your visit learn all you can so you’ll understand your options and be able to discuss them intelligently.

5) Make a list of questions to ask. When the doctor sees you have a list, he or she realizes you’re prepared and will want to make sure they have covered everything on your list before leaving the room.

When you go to your doctor’s appointment equipped with the above information, I’ve found it’s easier to lead the conversation and get the most out of the visit. The best part—the doctor will appreciate you coming prepared.

Think About a Thank You

Recently I received a thank you card from a friend. The card was unexpected because I hadn’t given her a gift and it wasn’t a holiday. A thank you card for a friendship we share. This card made my day and as it sits on my desk, it brings a smile to my face and reminds me daily of all the people in my life I am thankful for. Do I tell them often enough how much I love and appreciate them? Do these important individuals know how grateful I am for their friendship and their influence in my life?

I’m thinking about a “Thank You!” Is it possible to say it too much?

I have a great mother-in-law, Wanda Wilson, who I appreciate for the way she raised her son and credit her for many of Mark’s wonderful characteristics. She lives in the state of Washington, so we don’t get to see her often but we are grateful for cell phones and email which allow us to keep in contact with her. We appreciate the love and support she continues to give us.

I appreciate my cute sisters-in-law, Karen and Jerrie. Mark adores his sisters who are ten and eleven years younger. They also live in other states, but we always enjoy our visits with them. We are also grateful for their husbands, Mark Ray and Jon Stevenson. They are so fun to be with. Thank you for your love and support.

My biggest blessing is Mark. I appreciate him even more since I almost lost him twenty-two years ago in a car accident. He was a hard worker before the accident, providing for our family. After the accident he continued to work hard at getting better. Even though he can no longer do electrical work, he still works hard at ACS (Ability Choice Services) doing assembly work. I am grateful for those who assist him at ACS.  Mark is a joy to live with. I am so thankful for his life, friendship, humor and the great example he is to everyone he meets. I am proud to be his wife.

I revere our children, Christopher and Katie Mae. I appreciate the wonderful, helpful adults they’ve grown into. I am also grateful for their companions, Jenn and Eldin. They are great bonus children.

I am indebted to my parents and siblings, their spouses, nieces and nephews, who do so much for us. Too many to name, but they know who they are. I know I can call on any one of them, any time, and anywhere. They are not only family but dear friends.

I am thankful for doctors and nurses, who have saved Mark’s life. I respect their knowledge and training and especially appreciate those who maintain the “care” in their healthcare profession.

I am grateful for the many rehab therapists who have increased Mark’s abilities over the past twenty-two years. I appreciate their willingness to work hard and think of creative ways to fire up the connection between Mark’s brain and muscles. They’re wonderful and I applaud their work. Because of them, Mark accomplishes amazing things.

Last but not least, I am so appreciative for friends. They support and encourage us. Many volunteer their time to help Mark with his exercises. They don’t give up on us. They lift our spirits and help us achieve great things. These friends truly feel like brothers and sisters. We are so grateful for all they do for us.

I can’t imagine life being joyful or fulfilling without family and friends, and we wouldn’t have much of a life without the professional caregivers that assist us in our health. All are angels among us and help us get through the tough times. I’m so grateful to you all!

Caregiver’s Syndrome

I have caregiver’s syndrome: I can make appointments and take Mark to the doctor more easily than I can do it for myself. My excuses are: I spend too many hours in the doctor’s office as it is; my issues are not serious; I’ll go later when things settle down. The truth is “trigger” thumb is not as serious as blood clots. However, it’s uncomfortable as well as somewhat debilitating. After trying creams and a thumb-support brace prescribed by my primary care physician seven months ago, I was convinced that only surgery would fix my problem.

I put off the appointment with an orthopedic doctor for months. How could I have surgery anyway? I need my hands not only for my care, but for Mark’s as well. Who would shower, dress, and transfer him? I didn’t want to ask family or friends.

Since September, when Mark returned home from the care center, we have the benefit of home health care. I really appreciate the extra support this gives me. I wish the insurance would see it as a continual necessity. But since they don’t, if I have to have surgery, now is the time, while Mark has this benefit.

I made my appointment.

After a three-week wait to get in to the doctor, I was told a cortisone shot would most likely take care of the problem. I had it and it did. Why did I wait so long? It was almost instant relief. The thumb is still a little stiff and I can’t completely bend it yet, but it’s only been one week.  The pain is gone.

I also made an appointment for my annual checkup that was four years past due.

“Have you had your colonoscopy yet?” the doctor asked.

“No,” I said, bracing for her reprimand.

“You’re almost 5 years late. You better get that scheduled. It’s not that bad.”

“I have helped my husband through the preparation twice. It was horrible!”

She imagine about how hard that would be for a wheelchair dependent person and the hundred of rushed transfers to the commode, and then she agreed with me.

“The preparation is the worst part, then you get to nap,” she said, and suggested that next time I get Mark admitted in the hospital for the preparation.

“We can do that?” I asked.

She thought in his case we could.

After reviewing the questionnaire I had filled out just before the appointment, she looks at me and asks, “Why are you taking Flomax?”

“For my allergies,” I replied.

“Flomax is not for allergies it’s for the prostate.”

Turning red in the face I said, “Oh yeah, that’s my husband’s prescription. Mine is a nasal spray called, Flo something.”

She chuckled, “You mean Flonase.”

“Oh, yeah, that’s it.”

“You definitely have caregiver’s syndrome,” she said.

I’ll gladly take that reason over being absent-minded and resolve to pay more attention to my own health. I only have two prescriptions and I can’t remember the names of them. Mark, on-the-other-hand has several prescriptions, and those I know.

Mark’s well-being is dependent on me, therefore as a caregiver I should pay more attention to my own health so I can be well and strong.

It’s easy to say, hard to do. But I’m going to work at it.