Freedom of Mind

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As I imagine my ancestors fighting in the Revolutionary and Civil Wars, I am acutely aware that freedom isn’t free. As an advocate for the uniquely-abled, I could sound ungrateful for my family’s sacrifices. That couldn’t be farther from my truth.

This is an amazing country for persons with disabilities. Though it can be a fight to stay independent.

  • Fight the insurance companies who withhold services I need.
  • Fight hospitals who make incorrect diagnoses or don’t listen to my needs.
  • Fight for my next breath as my disease controls my heart and lungs. 

Maybe I’m not so different from my relatives?

During a recent surgery, my basic freedoms were compromised. My doctor left specific instructions for the post-surgical nurse to re-position and move my arms and legs. I awoke in a horrific situation.

My eyes opened and I overheard the phone call between the nurse and doctor. They debated my admission to the hospital. I couldn’t speak or move anything on my body. The staff wasn’t watching me. They isolated me behind a curtain even though my bed was the only one being used.

What could I do to say, “I’m in pain! I cannot move my body.”

With Multiple Sclerosis, I have learned to let go of control over my surroundings. Fighting the progression of the disease fails to accomplish anything.  Yet, this loss of control completely unnerved me.

I prayed this wasn’t the end. What was I supposed to do?

Let go. Let God.

As my human body fails me piece by piece, my will cannot overcome the will of God. At this moment, I felt God do something to my spirit that impacted my body.

Relinquishment of everything, allowed me to experience freedom of mind. When all options are stripped away, I found the Holy Spirit infusing me with strength beyond myself. God taught me how to access this freedom in the moments I waited to move a finger… then a hand to catch the nurse’s attention.

On earth, there is no true freedom in pursuing my Constitutional rights.

Unless I connect with the Spirit of God, I may not be able to survive in this world of sin and disease.

I face each day with prayer to unite my soul with freedom of mind. Then I can give to others as problems arise.

 

Advocacy for a Loved One: Part 2

Have you needed to stay at a hospital in the last five years?

Believe it or not, they are not in business to care for sick people. Pretty ironic, huh? I think if Americans were asked what hospitals were for, they would resoundingly answer to take care of people who are ill. So where is the disconnect?

Registered Nurses are completely outnumbered by patients at hospitals. In busy hospitals, their assistance is limited to doing vitals, giving prescriptions, performing routine medical assistance, and emergencies.

The Certified Nursing Assistants (CNA) are assigned the dirtier work, but there isn’t a button for a patient to call a CNA instead of an RN.  I am a fall-risk patient which means an alarm goes off if I use the toilet or sink independently. When I don’t have an advocate to walk out to the nursing station to find assistance, I irritate the RN’s with requests to help me ambulate safely.                                                                                                                                                                                                                         

The Certified Medication Aide (CMA) only visit patients twice a shift. If you need a medication between the shifts, you won’t get it. Unless you have an advocate pushing nurses to call doctors, you will suffer.

As an advocate, you should know what prescriptions the hospital will not administer to your loved one.

Children’s hospitals are super successful due to their superior communication system. The doctors and therapists communicate with each other and parents directly at a team meeting. Then the patient isn’t exposed to more harmful treatments than she/he can tolerate. http://ChildrensMercyHospitals.org

Doctors do not develop individual patient plans together for adults with chronic conditions. An advocate helps adult patients remember specifics so that specialists or emergency staff do not accidentally cause harm.

Insurance companies refuse admission to patients when they are in dire need. Of course, it may be that only low-income patients face this problem. When I had excellent insurance, a suburban hospital admitted me for kidney stone surgery in the middle of the night. They gave me morphine for the pain while we waited for a urologist to come to work.

When I need emergency surgery now, my treatment is vastly different. The metropolitan hospital that accepts Medicaid and Medicare won’t admit me or give me pain medication while I wait for a surgeon.  I’ve endured days of pain when they sent me home instead of rushing me into surgery. Before they admitted me, my kidneys started bleeding from multiple stones. When I go to the ER with an advocate, I am not left unattended for hours in the hallway on a gurney.

If all else fails, every hospital has a patient relations department. They work during the daytime. You may have to demand the hospital send a patient relations advocate to resolve more serious care concerns.  https://www.patientadvocate.org/

From the above, you might think I don’t like nurses or doctors.  The truth is- I know some wonderful nurses, therapists, and doctors. Some have saved my life. Their career intentions are often hijacked by hospital management, insurance companies, and exhaustion.

Before your next hospitalization, you might want to share the highlights of this post and  Family Advocating for Family Part 1.

 

 

 

When ADHD Turns Into Bipolar

Johnny sat with his head in his hands. Tears poured down his cheeks. Only twelve years old, he needed alone time where no one watched his emotional breakdown. I listened and watched through a window in the door. A gaping hole in the wall left evidence of Johnny’s intense overreaction only a moment before.

I quietly entered the room as I saw him breathing deeply. “Is there anything I can do to help you?” I asked.

Johnny said, “You can put me out of my misery.”

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“Can you remember what happened that caused you to feel so angry?” I said.

“No,” Johnny said, “I don’t know what happened. I’m just being honest. Am I crazy?”

“Since you’ve been honest with me, I’m going to tell you something that is more adult,” I said.  “I believe your brain is sending the wrong chemicals and hormones through your body. I suspect you were born with a brain that just works differently.”

Later that day, I had a frank conversation with his parents about visiting Johnny’s pediatrician. I shared that some children with a diagnosis of ADHD (Attention-Deficit Hyperactivity Disorder) may require a change to their medication when they approach puberty. In this case, I suspected Johnny developed Bipolar Disorder which requires different prescription medication and therapy from a mental health professional. It is easy to misdiagnose a young person with ADHD because the symptoms to Bipolar and ADHD are virtually the same.

However similar, Bipolar morphs when adolescence propels through a young person.

Once Johnny met with a pediatrician who specialized in behavioral therapies, his life turned into a world he could manage. It also helped his parents understand how to work with him.

If you are wondering about a loved one’s mental health, try visiting the following links about Bipolar.  ADHD and Bipolar in Children

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Family Advocating for Family Part 1

While some people are born medical advocates, others may fall into the position by default in their families. Instead of bregrudging the responsibility, it could be your chance to really effect change in the life of your relative. You could make his/her life less complicated. Wouldn’t you like to take away some of the chronic sufferings?

These would be my recommendations for new advocates:                                                                                                                                                                                           pharmacy logo

  1. Keep a separate medical calendar to jot down new symptoms as they occur, medical notes and procedures.
  2.  Always have a current list of doctors (phone numbers) and medications (dosage, frequency included) to take to office visits or an emergency room.
  3. After surgeries, please stay with your family member until after they’ve been escorted to a hospital room. Make certain they’re given the proper medications. This may require you to be forceful with nurses regarding pain management because they don’t take the word of the patient. (An unfortunate by-product of the opioid epidemic crack-down created a problem for people who need the medications temporarily.)
  4. Please help your family member communicate challenges at the facility or with staff.
  5. Ask doctors, pharmacists, and nurses for side-effects of medicine and procedures.
  6. Be involved with the day-to-day inner workings of home therapies, care workers, and medication schedules.
  7. Discuss your loved one’s desires for end-of-life decisions, if they can make those choices.

With many disabling medical conditions, is a loss of cognitive functions i.e. memory, speech, processing information. Your loved one’s life may depend on you becoming the best advocate you can be.

Learn from them before you walk into what feels like a battle. It is an honorable quest that will improve the quality of life of your family member who fights an invisible foe each day 24/7.

This is a national patient advocacy foundation for you to become more knowledgable regarding medical issues. https://www.patientadvocate.org/

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Therapy Dog vs. Service Dog?

Dogs inside the grocery stores? Dogs in the restroom stall next to yours? Some breeds are barely five pounds and others are the same size as humans. Spoiled or abandoned dogs grab our attention and hearts with their dedicated, unconditional love.

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“Is your dog working?” has been the most asked question when I am in public with my dog, Zoey. Then they tag on, “May I pet your dog?”

Let me address the first question. If a person is in public with a dog that has a backpack, the dog is working some type of job.

Two of the most common jobs are therapy work and service work. One major difference between the two tasks is that therapy dogs train to show affection to people. Service dogs are taught to attach to one person and are not to ask for affection from other people. That seems simple, “Right?” Except…

When you encounter a hybrid therapy/ service dog, the dog will be a friendly service dog in public. They tend to recognize when people need assistance or a little extra love.

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Our favorite volunteer, Mary Lou, at Providence Medical Center.

Zoey the Therapy Dog trained to be a hybrid. She is a veteran of the National Pet Partners’ therapy dog association because she loves people. However, she developed the ability to detect when I am starting to have a stroke. I worked on her scent detection skills during her training sessions as a puppy.

A local dog trainer and my doctors noticed she warned me when my blood pressure elevated. My brain is damaged and does not emit the proper chemicals to keep my blood pressure under control. When Zoey hops on my lap or chest, my breathing can regulate and the proper hormones are released in my brain to lower my blood pressure faster than pharmaceuticals. She even reverses strokes under adverse conditions.

For the most up-to-date information on typical service dogs check out this link.

Assistance Dogs International regulations leave little room for the ambiguity of a hybrid therapy dog/ service dog. The Americans with Disabilities Act states that a service dog needs to perform three necessary jobs for their person with a disability.

All organizations agree that the person with a disability assumes responsibility for any and all damages to businesses their dog enters. The same is true of a therapy dog team.

Service dogs go through yearly recertifications. If the dog has forgotten skills, they are retrained at the chosen facility.  Pet Partners’ therapy teams are assessed for public access every two years. Go to http://www.petpartners.org. if you think your dog would make an excellent therapy dog.