Tag Archives: Health

November 9 – A Pattern of Pain

by Kali’ Rourke

I have begun my 8th year of chronic pain with Burning Mouth Syndrome (BMS) and finally, something is working.

I have Primary BMS. If you have no underlying conditions and things look normal, despite oral burning every day that worsens as the day progresses, but ceases while sleeping, eating or drinking…welcome to our club and our pattern of pain.

If you have the same symptoms, but you also have an underlying disorder, then you may get a Secondary BMS diagnosis. Treatment of your illness may also relieve the BMS.

When you first start burning, you will try anything. I did.

Capsaicin rinses, aloe vera juice, vitamin supplements, etc. with no relief. Compounded estrogen spray in the belief it was hormonal, Lidocaine gel, which tasted foul and merely numbed everything…None of these helped me; not even a little.

Next stop, Specialists; each with their own perspective. They can cloud the issue if you aren’t careful. See your Dentist, Family Doctor and an ENT to start. They can often diagnose and treat the “horses” of this diffuse neuralgia. Some horses are: incorrect bite, dry mouth, allergies, hormonal imbalance, geographic tongue, and even acid reflux, so see a Gastroenterologist if GERD is suspected.

Often, we end up working with a Neurologist who will rule out the horses of tumors and nerve impingement, and when everything comes back normal, he will begin to look for “zebras.” Zebras are rarer maladies and often syndromes of exclusion. In other words, everything looks fine but you are still in pain, so it must be a Zebra.

What do we do with our Zebra?

In primary BMS, there is no cure and we can only guess at cause. Hormonal changes, dental procedures, stress and more are suspected, but no one knows for certain.

For those of us who are generally healthy except for this chronic pain, there are few medications that have been shown to be effective.

I tried Neurontin and Klonopin on my neurologist’s orders. Neurontin had too many side effects, and nothing changed when I went off it. It was not helping me.

Klonopin was different. I dissolved the hard tablets in my mouth, swallowing the medicine, and although it had the side effect of drowsiness, it took the edge off my burning and helped me cope.

This summer, my latest Neurologist switched me to Klonopin ODT dissolving wafers and they have been MUCH more effective for me. I put one on my tongue and let it dissolve, holding the liquid in my mouth for at least a minute and swish before swallowing.

I am now out of pain. I still get tingling at times, but about 98% of my day is mine again. My pattern of pain is broken.

If you suffer from BMS, consider discussing this treatment with your Neurologist or Doctor.

For the first time in over 7 years, BMS is not the first thing on my mind every morning. This may be temporary or perhaps it will last, but it is a joy not to burn and I will revel in it for as long as I can.

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Kali’ Rourke is a wife, mother, writer, singer/songwriter, avid volunteer, philanthropist and a proud Seedling Mentor. She blogs at Kali’s OQM Musings.

 

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August 22 – The Tiny Life

by Sally Nielsen

What does a turtle do or think about while inside its shell? Is it only concerned about when it’s safe to stick its head out of its shell or does it contemplate its life while inside it? Today I feel I might be a turtle.

This year two of my close friends and several of my acquaintances have started new life journeys. They are consumed with house details. One moved from a split level into a smaller house on her new husband’s large wooded lot. Another friend is building a new house with a forest preserve behind it; it has tiny closets and a tiny yard. Another is moving into a cabin in the woods. One has locked up her delightful condo and moved into the home of a poor Peruvian Andes family for ten months of Peace Corps work.

I’m not going anywhere and my life in a busy neighborhood in a large sprawling North Florida city seems routine and small-minded. I felt I should strike out on my own, show some moxie and become a fiercely independent lioness of older womanhood. Should I buy a tiny house and live off the grid in some out-of-the-way woods? Never mind that I have a ton of friends and children who care about where I live.

I have spent a great deal of time looking at YouTube videos of tiny houses–in particular those tiny house dwellings built by people who prefer to live off-grid. In one an interviewer exclaimed “It’s amazing!” constantly. Using the sun to heat your house in the north woods was amazing and bucketing water into the house was a sign of ultimate independence.

I began to realize tiny house life demands constant personal focus on its details. When tiny house dwellers video their spaces they use monotone voices. They speak of their challenges with patience and forbearance. And sighs. Although they will share a friendly selfie their videos view life from the eyes of a turtle inside its shell.

Doctors have discovered I have what appears to be a tiny lump in my left breast–a cancerous one. As I begin to make my way through the bewildering levels of cancer detection and treatment, tininess obsesses me. Let this one lump be microscopically tiny. Let it be solitary and let it have no grid, I pray. I fight against the impulse to retreat into my hard shell but the fact is I have dozens of people outside my shell–connections who have been through this and experts who are willing and able to help me.

As I caress my breast, promising it that I will try all I can to keep it there, I realize I already live in a tiny house that requires attention. I need my doctors, my nurses, my family and every one of my friends. I am grateful for my grid.

Sally Nielsen is a life writer who lives in North Florida.

July 17 – No Explanation

by Patricia Roop Hollinger

“I don’t believe this,” I exclaimed to my husband. “The caregiver at ARC informs me that Stephen needs a new wheelchair. The one just purchased last year is already missing a headrest and a foot rest.”

Stephen lives in a home for the disabled; as he was born with profound disabilities and was predicted to die within weeks, then months which now have become 50 years this August 17, 2015.

Oh, I made an attempt to keep him at home, until sleepless nights coupled with uncontrollable seizures gave me no choice but to relinquish his care in a setting where caregivers had 8 hour shifts; thus relieving them of the constancy of his care.

These caregivers are only paid a minimum wage. Thus, the constancy of his care is compromised by the frequency of staff leaving for a better paying job. And, yet, the legislature drags their feet regarding any increase in the minimum wage for workers caring for the ‘least of these among us.

Their primary concern is to halt all abortions. You know their spiel about the sanctity of life, blah, blah, blah. Does that include quality of life as well? Have any of them visited or cared for a child who is profoundly disabled in all facets of their bodies?

Stephen needs touch and a constant pair of eyes and ears. Vicky, a massage therapist, gives him a massage twice a month and then reports to me the state, or lack thereof, of his home and care. She has become my eyes and ears regarding his care.

Stephen, I pray that when you and I both are not bound by the limits of the physical realm we can have a conversation about all these years and the profound impact they have had on each of our lives.

Patricia Roop HollingerPatricia is a retired LCPC/Chaplain from a inpatient/outpatient psychiatric hospital as of 2010. She is a mother, grandmother, great-grandmother and the daughter of a mother who will be 102 on July 12th, 2015. She is a voracious reader, musician, lover of cats, and is currently exploring her writing skills.

May 14 – My Patio

by Doris Jean Shaw

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I take my coffee out on the patio just as the sun begins to hit the sky with a slight tinge of white. It is cool so I pull my housecoat close about me and watch as the sky changes to a delicate shade of pink. Sun up and coffee drank, I start my morning with breakfast served on the patio. I worry as Bud takes the step down from the house but he makes it.

In a previous life I must have been a nomad who lived outdoors most of the time and only went inside to sleep. Even better, I would be sleeping under the stars or in a lean-to that kept the wind off while I enjoyed the night sky with the soft velvet dotted with sparkles of light. Now, I get out as much as I can. Duties drive me inside only temporarily.

Lunch finds us back on the patio. I look across the table at Bud and flashes of by-gone days on the beach cross my mind. He would prop his feet up on the rail and watch the activities going on around the pool. I think I could sleep out here if a lounge could be shoved into the four-foot space.

No such luck, Bud is down for a nap and I attempt to complete the necessary housework to keep us going.

Supper finds us on the patio having missed the sun pouring in during the late afternoon. We now must deal with the descending shadows and the cool breeze coming our way. I linger for a moment before helping Bud up the one step to the house wondering how much longer he can make that step.

Doris Jean ShawDoris Jean Shaw is a retired educator, Life Coach, author and member of  the Beauregard Parish Writers Guild–The Ink Blots. She loves to travel and writes romances, children’s stories and devotionals. Mrs. Shaw presents a workshop, entitled Reclaiming Me that helps women find direction for their futures.

April 10 – Staying Calm

by Doris Jean Shaw

I have no Sunday to hang my week on; sometimes I lose track of what day it is. When my husband could no longer sit through a church service, we no longer attended. At the present, my one concession is to get up a few minutes early, drink my coffee in a room that starts out dark and is illuminated by the rising sun. I need that time to myself and to prepare for the day.

No longer is my time my own, as his health diminishes, my husband depends on me more and more to help with every day tasks. By ten o’clock, breakfast and bath are behind us. Any doctor’s appointments are scheduled for mornings, as by afternoon he is worn out and struggles to get out of a chair. Preparing lunch and seeing that he gets up and walks a bit drains me as well. The hardest part is to remain calm while he grows agitated. No longer can he dress without help. Eating is a challenge as his hands shake and food falls off the spoon. His foot does not want to move. Just getting through the ordeal of daily living leaves us both ready for a nap to rejuvenate. Between treatments for various ailments and his frequent trips to the bathroom, I am once again exhausted after supper and preparations for bed are complete.

Sleep eludes me as I wrestle with what I have to do, and the negative responses I get from those who have nothing but unsolicited advice. Thankful I am not in charge of the future, I get down on my knees and thank God for helping me through the day, and pray that tomorrow will be a repeat of today for I am not ready for the alternative.

Doris Jean Shaw is a retired educator, Life Coach, author and member of Beauregard Parish Writers Guild “The Ink Blots.” She loves to travel and writes romances, children’s stories and devotionals. Mrs. Shaw presents workshops, entitled “Reclaiming Me”, “My Parents Keeper”, “The Trouble with Retirement”, and “Care for the Caregiver” to help women find direction for their futures.

January 27 – The Pity Party – Burning Mouth Syndrome

by Kali’ P. Rourke

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I have been suffering with Burning Mouth Syndrome for nearly six and a half years now. Interested in learning more about this mystery disease?

I would tell you to Google “Burning Mouth Syndrome,” but I know what mess would appear. Mayo Clinic does a fairly good overview at http://mayocl.in/1mRRGuu.

I suspect my burning was caused by dental work, but I may never know the cause. Every once in a while, what my Neurologist euphemistically refers to as “the persistence of it” overwhelms me and I have a brief, but intense pity party.

Instead of focusing on the optimistic side of the coin:

It isn’t fatal
At least it isn’t cancer
My family is supportive
There are drugs that help
I have developed decent coping strategies

I occasionally dip into the pessimistic side:

It hurts nearly every day
The drug helps but makes me drowsy and aimless
There is no rhyme or reason to the good days or the bad days
Even on good days, my tongue tingles all of the time
I think, deep down, I am angry
I fear–It. Will. Never. End.

Recently, I got a new medicine from my neurologist. It is used at a fairly low dose to control errant nerve activity and at much higher doses for patients who are dealing with seizures. Under his direction, I ramped up my dosage gradually to see if I could tolerate it. Side effects included possible lowering of blood sodium, drowsiness and suicidal thoughts.

You would think those things would scare me, but with exception of the sodium levels (which we monitored with blood tests), anything I take has those side effects, and more. They are “old hat” to me now.

Our goal in adding this medicine was to calm the misfiring nerves that cause the burning and tingling sensations in my mouth. If we could get the nerves to rest, it may help with the healing and have the added benefit of symptom relief. I could only hope.

Hope is a powerful thing, probably even more powerful than medicines.

Unfortunately this hope did not pan out, and I have added one more unsuccessful medication to my ever-growing list. I am fortunate to have one medicine that does control the pain to an endurable level and I will keep looking.

And every so often, I will pause, indulge in a brief pity party and then move on.

Kali’ is an avid volunteer, a Mentor with Seedling Foundation, and an Impact Austin philanthropist. In her spare time, she does social media for nonprofits, blogs and is also a singer/songwriter!

June 10 – The Balancing Act

by Dorothy Ross

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Balancing physical activities and medications with social and civic commitments is vital for people with Parkinson’s, and it isn’t easy.

With only twenty-four hours in each day, balance requires planning. If I’m lucky enough to sleep for seven or eight hours at night, I often wake up with a bad case of “off” time. I stuff my feet into my Uggs and shuffle into the bathroom for morning meds. Then I wait. And I wait. And I wait for the medications to work their magic. They will not be rushed.

Coffee clears my head of its morning fog, but it does nothing to move my feet. I don’t dare schedule any appointments before nine a.m. because I’m not safe behind the wheel until my feet can be made to obey my brain. The hours between six and nine in the morning aren’t a total loss. I type awkwardly during that time, but I can usually answer email, browse the Net, and keep up with the grandkids’ Facebook pages.

Once the morning shot of levadopa makes its way to my extremities, I’m ready to start my day. My husband and I walk our big dog in the University of California’s sprawling orchards–two or three miles most days. By the time we get back, I’m tired and “off” and I need to sit again until the next dose of meds takes effect.

I’m generally in good shape through the middle of the day. If you saw me downtown on my way to meet a friend for lunch, you might not believe I have PD. But when I get home from my outing I’m often listless and sagging, and sometimes freezing in my tracks. So I take a pill and lie down for a nap to rest up for the evening.

You don’t need a detailed itinerary of my week’s activities to understand how important it that I listen to my body and make a plan to be alert and strong when I have a commitment that requires my active participation. I’m sure that’s what Michael J. Fox does; otherwise, he couldn’t stand up to act in front of the camera.

To help me track the fluctuations in my moods and movement capabilities, my doctor has suggested that I keep a PD journal. I record the hours of sleep and naps, the timing of meds, amount of exercise, “off” hours, and social events. The details in my little book serve as vivid reminders of how important all aspects of my life are and how I must make time for family and friends and fun, as well as dance and yoga and walking–if not every day, then over the course of every week. That’s the balancing act.

Dorothy Ross facilitates the Parkinson’s Support Group in Davis, California. The subject of the current SCN writing contest suggested this piece for that support group’s blog.