Tag Archives: Health

Chronic Itching: Hope on the Horizon

Readers of this blog know that I have lived with chronic itching for over a year. Some moments are really yuk, but I continually remind myself to be thankful to God for the good days, for the simple fact that I’m able to walk, talk, see, hear, and eat.  And write. And take classes. And walk Michigan Avenue. And the list could go on.

And, today, was an especially good day as an article in the New York Times addressed chronic itching. Dr. Lynn Cornelius of Washington University School of Medicine was quoted as saying chronic itching is a “huge clinical problem and a huge unmet market.”  Amen.

I do not subscribe to the New York Times, but friends here in IL and in MI and NC sent me the link. I am grateful!

Unless a person suffers from chronic itching, I think it’s impossible to know what it’s like to live with bees attacking you or fire ants hosting parties on your body. As in other diseases, the sufferer knows best the experience of living with the symptoms.  And sufferers, in general, know best the feelings of hopelessness and the importance of hope.

Articles such as this one in the New York Times give hope. The article affirms that the study of chronic itching is a relatively new science. It affirms, for those of us living with chronic itching, why we’ve desperately plodded through the medical and alternative medicine community only to come up with few to no answers. It affirms through description of research findings that there are legitimate causes for our symptoms.

It says, what we knew all along, we are NOT hypochondriacs. Or a bit off our rockers.

Please take a few minutes to read the article: Itching: More Than Skin-Deep – NYTimes.com. And please share the link with your friends and/or social media sites cited under comments. I can assure you that someone will know someone who, like me, will be grateful for the information.

How is your doctor’s nonverbal communication?

Last week I praised my internist’s therapeutic communication skills and promised I’d write about some bad experiences soon that I’ve had during my nearly 15-year history of fibromyalgia. So today is the time to give you one example that still floors me years later.

Petunias on the Chicago River yesterday. A  peaceful scene to keep you calm if you identify with this story!

Petunias on the Chicago River yesterday. A peaceful scene to keep you calm if you identify with this story!

Some back story. When I taught nursing, therapeutic communication was my favorite module, both in a beginning concepts course and in a senior level mental health nursing course. Part of teaching that module included learning therapeutic nonverbal communication.

The doctor in my example could have benefited from taking my class and learning about SOLER skills for his nonverbal communication or body language.

S=Face your patient squarely. Adopt a position that indicates involvement.

O=Adopt an open posture. Crossed arms and legs can be signs of lessened involvement.

L=Lean toward the patient.

E=Maintain good eye contact. Communicate “I’m with you.”

R=Try to be relatively relaxed while engaged in above behaviors.

The following example is of a visit to a GI (gastrointestinal) consult about pain under my right rib cage. My internist at the time wanted an opinion from a specialist in this field.

Waiting for the doctor, I was heartened to see on his diplomas that he graduated from the same university as I and must be about my age. Naively, I thought, since he got an MD and I got a PhD in nursing about the same year, age-wise that would raise my chances of liking him.

The minute he walked in the room, I sensed this was not going to go well. Dressed in a crisp white lab coat, he passed my back and sat behind a humongous desk that separated us, grunted hello, adjusted his glasses, and, without looking at me, read the forms I’d filled out.

He confirmed I was there for pain on my right side below my rib cage. Then he told me to go across the hall and put on a gown. There he pummeled my abdomen without saying a thing, or looking at me, and then said to get dressed and meet him back in his office.

Once there, he  leaned back in his chair and said in a clinically efficient, detached manner, “I don’t deal with pain above the waist, and yours is above your waist.”

Duh. Pain above the waist was why I was there. So what does a patient say in that setting? I get tongue-tied, a problem I rarely have, but it strikes me in doctors’ offices.

When I recovered from my shock, I asked, “Can you give me any idea of what may be causing this pain?”

Leaning back even further, plus crossing his arms, he said in a dismissive tone, “Over 50 percent of my fibromyalgia patients have irritable bowel syndrome, so you probably have it. I’ll give you a prescription.”

I tried to tell him I did not have any symptoms of that disease, but he waved me off, wrote a prescription, stood up, handed me the prescription, and started to walk past me out of the room.

Tongue-tied again, I stood, feeling the color drain from my face, and feebly said Thank you. For what, I still don’t know, but suspect my childhood programming to be nice automatically kicked in.

Walking zombie-like down the hallway to the elevators, I felt sandblasted. When the elevator door opened and I saw that I was alone, I pressed the lobby button and burst into tears. And I wasn’t a kid; I was around sixty.

Now why couldn’t I have confronted this pompous fellow? What could make me slow on the draw in these settings? I have no problem thinking up things to say once I’m retelling my experiences.

What about you? How is your doctor’s nonverbal communication? If not good, do you confront, or are you temporarily stymied, like I am, when he or she doesn’t meet your expectations of a caregiver who cares?

Therapeutic Communication Skills – An Essential in Health Care

“Don’t let it happen again,” said Marianna Crane, my nurse practitioner friend. I could hear the disbelief in her voice.

Marianna and I share a history of graduating from diploma schools of nursing in the early sixties. At that time, a visible hierarchy existed in health care. Doctors were treated like gods. And, even though Marianna and I attended nursing schools many states apart, we were instructed to give up our seats for doctors when they entered the nurses’ station, to stand aside and let them get on and off elevators before we did, and to silently endure whatever tantrum they decided to have on any particular day.

My student days in the 60s.

My student days in the early 60s.

Over the years, the situation has changed. Not as much as some would like, but doctors and nurses now work more collaboratively than in our days of nurses’ training. But, as a result of the years enduring a subordinate role, we share a healthy resentment for doctors that still see themselves as gods. As for me, with those early beratings1 imprinted on my psyche, every doctor in my life has had to earn my respect before I accorded it. 

So, when I was talking across the miles to Marianna, I was telling her about a probably once-in-a-lifetime occurrence. On one of my many visits to my internist for my now months-long history of itching, just as he was leaving the room, I said, from my perch on the end of the exam table, “I have something to say that I’ve never said before.”

He turned from the doorway and looked at me. I swallowed. “You’d NEVER have caught me saying this before, but today I’m happy to be JUST a nurse.” His face stayed one of concern as he gave a gentle wave and left the room.

There, I had said it. JUST a nurse. In all my  twenty years of teaching nursing, I had preached to my students to NEVER say I’m JUST a student and, in my twenty years of practice before that, to my colleagues to NEVER say I’m JUST a nurse. I had a strong basis for saying this, of course, and, if they questioned me, I would remind them of the rigor and years of study required to become a nurse. 

So JUST was a word that JUST wasn’t in my vocabulary. But on that day in my internist’s office, I had come to a complete blank about whatever it was that was causing my body to continue itching. I had exhausted search words and websites. I had exhausted my run of specialists and alternative treatments. I had exhausted trying prescription and over-the-counter medications.

You might say I was JUST exhausted, too exhausted to be thinking clearly. But I know I was thinking clearly, and I was thankful for his listening to me these many months, taking my multiple concerns seriously, trying to help me feel better, replying promptly to my many emails, and never talking down to me or sounding paternalistic.

As anyone suffering from a chronic illness that invades their life and lifestyle knows, when you find a doctor that meets your needs, you are thankful. So I can excuse myself for saying I am “just a nurse.” I am a fortunate nurse who found a doctor I can respect. A doctor who exemplifies the therapeutic communication skills I used to teach my nursing students and expect to experience with all health care professionals.

Now, if you think I’m getting a bit sappy, sometime soon I’ll tell you about unpleasant experiences I’ve had in the past with doctors in my quest for relief from fibromyalgia. Stay tuned. And if you have a story, negative or positive, to add, please do!

 ~~~

1 I have documented several of these “beratings” in Caring Lessons.

 

 

What do nurses do? Let me count the ways…

Once upon a time, two women in their late sixties met at church and soon became friends. Letty is now 76 and Martha 74. Martha is a widow and moved to Letty’s small town after her retirement and the death of her husband to be near her children.

Last week, Letty sent me this email, in narrative form. As a retired nurse educator, I immediately recognized a “clinical vignette” that I most certainly would use if I were still teaching nursing. In my module on therapeutic communication, I would ask the students to identify and analyze the RN’s “nursing interventions” that made a significant difference in Martha’s experience of having a CT scan. The vignette could also serve as an insight into the needs and friendships of older persons.

See what you think.

I spent the morning with Martha at the hospital – she needed a CT scan and just wanted me along – again made me aware of what it is to be a widow! I could go back into the area where she was “prepped” for it. We sat in chairs side by side, and the nurse, an RN, offered us warm blankets while she did what she had to do, and then Martha had to drink some barium. When the nurse brought out the four bottles, Martha right away said, “I can’t do that.”

 And I said, “Too bad it isn’t flavored like I did with the Go Lightly with Crystal Light.” 

 Immediately, the nurse said, “I can get that!” And off she went for a package of fruit flavoring and came back and mixed some in the first bottle.  

 Martha took a sip and said, “I can do that.” Over the hour she got three bottles down – and that was it. As the nurse kept chatting with us, Martha kept sipping, and then it was time to go for the scan. Later the tech told her they got great pictures! What a relief. Martha doesn’t like to drink much, so this much fluid really was hard to do.

 The nurse was most patient with Martha’s request, and told her how to just sip away. On a scale of 1-10, she was a 10.  I told her about you saying nurses don’t get near the credit for all they do, and I think she used a phrase similar to what you wrote or Marianna [my friend at nursingstories.org] wrote! The RN is normally an ICU nurse, but said she does this to keep her sane!   

 She was everything you’d want in a nurse under these circumstances – Martha was a bit nervous about it, and her BP was high, and the nurse just calmly said, “It is okay. Just check it on your own sometime.”

 Martha has always had a great BP, but lately it has been high, so her doctor suggested she go to the same place, at the same time of day, to monitor it for a couple of weeks. The nurse told her the same thing. Martha is on some low dose of a BP medication until she sees her doctor again next week. It has been good where she has gone to test it lately. I think she just was more anxious when she saw all she had to drink.

 Another case of being a widow and how it is to do these things alone! She hates to ask for help but knows I am always willing to be there. Her daughters would have to take off from work, and they have done that when she asks, but she feels that isn’t nice for them. She could have gone alone, but was concerned about how she might feel afterwards, and that was before she knew she would have to drink that stuff!  

 She took me out for a late breakfast – a place we went to once in a while when we used to live nearby. So a pleasant ending to it all.

 Heartwarming, right?  How would you feel in Martha’s situation?

Can you see why Letty rated the nurse as a “10”? Offering warm blankets, getting the flavoring, giving instructions how to sip, chatting for distraction, being patient, being calm…

No doubt, as you read this story, your own experiences crowded your mind. Know that you have a right, as a patient, to be treated in all encounters with competence, respect, and compassion.

Thanks to Letty (not her real name), one of my sisters, for permission to print her story about her morning with her friend Martha (not her real name).  “Letty” had no idea that she’d given me such good material to show the holistic care of a nurse!

Patient Activation – Nostalgia for Dorothea Orem!

Last week I read an article about “patient activation” with some amusement. Activation sounded like batteries. Did patients need a couple of Triple As inserted into the soles of their feet to get involved in their own health care?

The article defined patient activation as “understanding one’s own role in the care process and having the knowledge, skills, and confidence [italics mine] to take on that role.”

Chuckling to myself, I thought of the mid-seventies when I was a student in an RN-to-bachelor’s degree program. My friend and I were taking a nursing concepts course and learning about theories of nursing for the first time. In Dorothea Orem’s1 developing conceptual model of self care, we learned about patients’ self-care agency—agency referring to the knowledge, motivation, and skills required for them to meet their own health care needs.

Sitting in the back row of the class, my friend and I dissolved into giggles. Agency reminded us of insurance, not nursing. After all, we’d been nurses already for fifteen years and had functioned just fine, thank you, without knowing a thing about our patients’ self-care agency. We had learned and practiced nursing under the medical model, a model based on body systems, medical diagnoses, and physician-ordered treatments.

In those days we even had to call the doctor for an order to shampoo a patient’s hair.

In the interim, however, nursing scholars had made significant advancements in formulating our own theories of nursing that described the art and science of nursing, enabling us as a profession to think within a nursing framework. Simply put, instead of “doing physician-ordered treatments to” our patients, we adapted the well-established scientific method into a five-step format called the nursing process, to work collaboratively with our patients to (1) assess their nursing care needs, (2) make nursing diagnoses, then (3) plan, (4)  implement, and (5) evaluate their care, with the goal of assisting them to achieve an optimal level of self care.

It was an exciting time for nursing. A drastic change in thinking from working dependently under physicians to working collaboratively with them, and, in some cases, independently.

I digress! Now I’m reading the definition of “patient activation” and am riveted to my nostalgic bookshelves where my old textbooks have found a permanent home. I find three editions of Orem’s Nursing: Concepts of Practice and a user-friendly “primer for application of the concepts” that I used later in my teaching.  I read again about knowledge, motivation, and skills. What goes around comes around, comes to mind. And I’m proud of the early nursing scholars for their seminal theoretical work.

My dear friends!

My dear friends!

But, no doubt If I were sitting in a class today learning about patient activation, batteries would come to mind, and I’d be back to giggling. However, it’s not a laughing matter. According to the article, “patients who are actively involved in their health and health care achieve better health outcomes, and have lower health costs than those who aren’t.”

Applying this notion to my scabies story of last week, I did not need batteries to activate me to seek a doctor’s help, the relentless intense itching did that on its own. No doubt seeing my internist, then a dermatologist promptly led to a quick diagnosis and treatment so that my symptoms are mostly gone and my costs have been kept to a minimum.

I bring up this experience because in my Web search on itching, I read dozens of posts by people suggesting a myriad of home remedies to quell the scratching. I read of people being too embarrassed to see a doctor. I read of months, even years, of undiagnosed, probably under-treated, bouts of itching causing much distress.

I think now about how desperate I was for relief over the three days between my doctors’ visits. I think of how much time I spent searching the Web and scanning shelves at Walgreen’s for products that might kill off the invaders of my body and sanity. And I think how my anxiety would have been compounded if I didn’t have access to health insurance.

As it was, I had insurance and the knowledge, motivation, and skills  to seek the proper treatment. Without these, it’s highly doubtful I would have better health outcomes and lower costs than people who don’t have these resources.

Read the article yourself about the concept of patient activation, and see how it applies to you and your relationship with your health care providers. Get activated. Get engaged in your own health care. If we all do this, and if our health care providers work with us, we’ll have better outcomes. Plus, we’ll know we’re doing our part to be as healthy and happy as we can be, while, at the same time, helping to contain our ever-increasing health care costs.

***

 Read an additional response article by Jacob Molyneaux, Senior Editor at AJN Off the Charts.

 1Orem, D. (1971). Nursing: Concepts of Practice. New York: McGraw-Hill.

Unwelcome Itchy Visitors

I wish I had something more soothing to write for you today. But last Monday, after a three-day hissy fit of prickly-burning body-wide itching, a dermatologist looked at the tan line on my back and asked, “Where’s this tan from? And how long ago did you get it?”

“Aruba. Three weeks ago,” I said.

“Then I think you have scabies,” he said. “With the intense itching, that’s my best bet.”

Gads! In my distant past, in nurses’ training, I recalled learning about scabies, only I thought they only occurred in a third-world country. I wanted to disinfect myself immediately.

“The time’s right for the incubation period,” he added. “Hotel linens, maybe.”

As I sat obediently on the exam table, my mind buzzing with my recent history, I thought, “Is this really happening, Lois?

A few days before, while having coffee with a friend, my left hand had turned blue. For no reason, and had stayed that way for a few hours. The next morning I called to see my internist. By that afternoon when I saw him, I had developed a rash over much of my body. And it was starting to itch.

Blue hand and rash and itching. Connection? “We better do some tests,” he said. “With your autoimmune history, there may be something going on.”

When I got home, I sat at my computer and Googled blue hand and rashes and intense itching. What I read about made me want to plan for my final days. As a nurse, I always plan on the worst thing. Liver failure, maybe. But my bathroom mirror said the whites of my eyes were still white. Not jaundiced.

Yet.

Calm down, I told myself that evening while I searched the shelves at Walgreen’s, coming home with $36.00 worth of anti-itch products. To say I was merely being attacked by a colony of ants picking and scratching their way over and through my body does not give them nearly enough credit for the massive destruction these creatures, whatever they claimed to be, were rendering on my sanity as well as my body.

When the blood tests came back normal (thank goodness!), I called a dermatologist, pleading with the receptionist that I get in stat! She gave me an appointment in one hour. I was there twenty minutes early, and now I sat with a most probable diagnosis of scabies.

Never mind the blue hand episode.

Have you ever seen scabies? Gross, is my best word. But to think they were burrowing their ugly prickly bodies under my skin was a thought I tried to suppress. But suppression was not possible when my mind was consumed with relentless itching from their chaotic tunneling activity.

And then.

That evening, with $28.00 more of products, I covered my entire body from hairline to soles of feet (well, I had a little help from my ever-forbearing husband) with this prescription scabicide cream that was supposed to kill my new enemies. Envisioning, that by using this cream, I was murdering the creepy mites threw out any thoughts of pacifism and threw in gratitude for research and development and pharmaceuticals.

The next morning, per directions, I showered. Ideally, the murdered mites had surfaced somehow and would disappear down the drain. Since they are too small to see with the naked eye, I did not have the pleasure of visually wishing them a stinky sewer burial.

But here’s the thing. Scabies don’t leave that easily. With the rash now mostly gone, the itching continues with intense waves of discomfort. And, in this hot-water-wash-everything era of my life, I’ve read that scabies can stick around for several weeks or more, leaving their eggs and, of all things, their excrement under my skin. Don’t their parents have any manners? You’d think they’d teach their kids about the use of restrooms.

I see the dermatologist again this morning. On my visit a week ago, he did a biopsy also, so I’m hoping nothing more serious shows up in that sample. If not, I may just have to adjust to accommodating my unwelcome visitors while I do my utmost to encourage them to make their final exit ASAP. Like, here’s your hat, now please hurry.

I’ll give you an update next week. Meanwhile, I sincerely hope you don’t start to itch. This is no fun. No fun at all!

Want a hug?

Untapped potential? Try the Tennessee Fitness Spa.

I never heard of wallyball until two weeks ago when my friend Marianna and I spent three days at the Tennessee Fitness Spa. To celebrate turning seventy this year, we wanted to do something new, something different, and something a bit crazy.

A fitness spa deep in the TN woods, home to a Natural Bridge and an Ice Cave, met our criteria.

Each night, we circled the classes on the “training schedule” we planned to attend the next day. Wallyball didn’t get circled. But, one day, a fellow fitness fella came to the gym and asked for volunteers.

I raised my hand; I was in.

Marianna and I had just finished two and a half hours of participating in land and water aerobic classes, more exercises than we’d probably ever done in our adult lives.

On seeing me volunteer, she said, “You’re nuts!”

So why did I say yes? Some decisions can be beyond rational.

The last time I played volleyball was forty years ago, and the last time I played racquetball was thirty years ago. So I guess it was a bit nuts, but it was new and it was different, and this is what I wanted out of this fitness spa outing.

Once I got on the racquetball court, I had to ask how to play the game. Except when you serve, try to hit the ball on the wall of the opponents’ side. Easy enough.

However, I forgot to remember that I’m not as agile as I was thirty and forty years ago. I forgot to remember that serving the ball could be painful on the fist. I also forgot to remember than my opponent could mistake my face for a wall.

In spite of these memory lapses, I managed to stay upright and mostly uninjured during three games. I can’t tell you why, but an inner voice of reason told me to quit before playing a fourth. Luckily, because two others did get injured in that fourth game. And, if that were me, I would not have had the chance to make more irrational decisions if couch-bound with my affected extremity elevated and packed in ice.

Of the entire spa experience–all the land and water classes, I single out my success in playing wollyball because I was so pleasantly surprised that I could still play. That I could still raise my arms above my head (quickly)…pivot on my feet (quickly)…set up a ball (quickly)…serve the ball (not so quickly and not without a weeping uproar from the blood vessels in my fist).

And, I admit, it was a good thing that there was no time to contemplate which muscles were screaming or where the energy was coming from for this most sustained and rigorous movement I’ve done in years. The point is I discovered I could be physically successful at something way outside of my everyday experience.

Dream a little. Some people come to the spa to lose weight. Some come for a retreat from their normal world. Pretend you’re going. What would you like to discover about yourself?  Perhaps an untapped potential. What would pleasantly surprise you?

Whatever it is, submerge yourself for a bit in the serene ambiance of this healing place.

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A Shout Out to Wound Ostomy and Continence Nurses

“I’d like you ask you something, ” a patient said to the nurse. “Are you Asian?”

The nurse, Caucasian, said,  “No, I’m not. What makes you ask?”

“Your name. On your badge. It says Debbie WOCN.  And that last name sounds Asian.”

Last Saturday, I heard this story from an attendee at the Mideast Region Wound Ostomy and Continence Nurses Society conference where I spoke on why nurses should write about their nursing lives.

I stressed that one reason we should write is to educate the public about who we are, what we know, what we do, and why we do it. I mentioned that, to begin with, people don’t know what the alphabet soup after our names means. We have multiple points of entry into our profession, multiple degrees, and multiple certifications.

So, no wonder this patient asked this nurse if her last name, WOCN, was Asian. The nurse explained to me that in her hospital their name badges have their first names only, followed by their credentials. And she is certified in Wound Ostomy Continence nursing (WOCN). She has specialized in this area, taken advanced coursework, and passed a certification exam. In addition, she keeps up with attending classes to earn continuing education units required to renew her certification.

Know also as ET’s, Enterostomal Therapists, these registered nurses (RNs) are the ones you want to know if you develop problems in their area of specialty. From looking over their conference sessions, I saw that, even as a retired nurse, I have friends or family members with several of the problems addressed and could use their knowledge and assistance: caring for patients with an ostomy of any kind, assessing and treating the skin around an ostomy, learning how to strengthen pelvic floor muscles to curb incontinence, caring for patients with lymphedema caused by various conditions (you may be familiar with this happening after removal of lymph nodes in the armpit region during surgery for breast cancer) …and much more.

It was easy to encourage these nursing experts to write about what they know, do, and why they do it. Articles on any of the above would be of benefit to a host of readers!

I thank this group of nurses for asking me to speak at their conference. It was an honor to be among the presence of these knowledgeable and dedicated professionals and to be attended to by my host, Catherine Clarey-Stanford, MSN, RN, nursing faculty member, Hope College, Holland, Michigan.

It was gratifying to meet a former student of mine from St. Xavier University in the early 90s, to hear of someone’s mother who was a fellow Blodgett Hospital School of Nursing grad, but years before me, sending me her greetings, and to have my former student from Trinity Christian College, and Michigan publicist, Amy Nagelkirk, assisting with sales of  Caring Lessons.

The conference was held at the stunningly beautiful Amway Grand Plaza in downtown Grand Rapids, Michigan. When I was growing up, I lived nearby for a while and use to marvel at what was then the Pantlind Hotel.  On this return visit, I was privileged to speak in the “old-world elegance” of the Pantlind Ballroom.

And, as a final big thank you, this group of nurses knows how to treat nurses. Imagine my surprise when I entered my two-room suite in the new glass tower to find wine, cheese, and crackers waiting. I called my husband and told him what he was missing. He reminded me, with a chuckle, I’d not invited him along.

So, I enjoyed my suite, the view of the Grand River and a zillion Japanese Lanterns flying by my 20th floor window from Art Prize all by myself. More about those floating lights in the sky later.

Caregivers Write Your Stories (#6) / Living with Fibromyalgia Part III

This post is the last of the series on why caregivers should write their stories, caregivers of others and caregivers of yourselves. Three reasons addressed in this series are: to keep a record, to vent (“scream your words on the page rather than hurl them into the air”), and to educate and encourage others in similar situations or who want to learn about them.

***

Hello, again! If you haven’t read Parts I and II here of my Living with Fibromyalgia, you may wish to before you continue.

I want to start with answering the question: What pain relief intervention helped me the most over the long term? One word, therapy. In the midst of my seventeen-month ordeal of crises (Part I), I got the idea from a nursing student of mine when we were talking about a psychiatrist who specialized in psychopharmacology, the branch that focuses primarily on chemical interactions with the brain. Click on the following photo to enlarge:

Regions of the cerebral cortex associated with...

Regions of the cerebral cortex associated with pain. (Photo credit: Wikipedia)

Since I’d already tried several pain medications and knew that an imbalance of neurochemicals (particularly serotonin) could be contributing to my pain, I decided to see this physician. I failed to mention that during that period of multiple crises, two people close to me died, one being my mother who passed away two days after our party for our mutual birthday. In addition to pain at that time, I was tired and teary and recognized I needed more help than my internist could give me. I had selected this internist because my insurance plan had changed and did not cover my initial rheumatologist.

The psychiatrist worked with me on medications, but then gave me a referral to a therapist. Me? See a therapist? Yes, me, the teacher of mental health nursing. I went for the workup, thinking I would be merrily on my way after a few visits.

But, having over fifty years of life behind me, I had a lot to discover, cry about, and work through. Once, the therapist said, “I have clients who have gone through much less than you have, and they’ve taken a leave of absence from work.” I quickly reassured him that nurses always show up. We do not call in sick. Ever.

After dealing with my past history, I couldn’t let go of him as a supportive sounding board. And here is the reason why staying in therapy was so helpful. I could unload my yuk stuff in his office, learn more about myself, and spare my husband and family much of my frustration of trying to act normal at home and work when I was tired, in pain, and having trouble sleeping. In fact, my grown kids often say yet today, “Mom, you say you’re having pain, but we don’t see it, so it’s hard for us to appreciate how bad it really is for you.”

In April of 2003, I wrote in my journal: “Owned up to having FMS in therapy session yesterday.” It took me that long, from 1997 to 2003, to fully accept my diagnosis. I could finally move on. But it took until February of 2011 to give up trying to get rid of my pain. I’d tracked down the rheumatologist who diagnosed me in 1997 and, after she’d treated me a few months, and after I was sleeping much better and my hot poker pains had reduced from a 10 to a 4-6, she said to me, “Lois, This may be as good as you get.”

Suddenly, I felt a sense of relief. I could stop running after a cure. I could learn how to live with a pain level hovering around 5.

I am not recommending any treatments for you, but I want to tell you what works for me now to keep my fibro flares under control. Five simple guidelines:

1. Say no (to doing anything that is not necessary for living or does not interest you).

2. Move more (to wipe out the opportunity for feel-sorry-for-myself sedentary days).

3. Eat fewer white sugar/flour foods (to increase energy and decrease fibro fog).

4. Pace activities (so you can enjoy what you do without spending a day in bed in between).

5. Use distraction techniques (to confuse the pain signals in your brain, letting you forget the pain when you’re focusing on something fun).

Being retired, I feel blessed that I have control over my time. Plus, I’m thankful to have a supportive family. I can do most everything I want to do. I’m thankful each day that I can walk, talk, see, hear, and write. And eat! I just don’t do anything too long or too fast or too often. But I do, do. And I sincerely hope and pray, if you are in a painful place, you can experience a goodly measure of relief too.

Informational Resources:

www.FMaware.org

www.fmnetnews.com

www.nlm.nih.gov (Search “fibromyalgia)

www.rheumatology.org (Search “fibromyalgia)

***

I want to say thank you to Annie for giving me the opportunity to guest post on her blog. My writing group has encouraged me for about ten years to chronicle my FMS story, so blogging for Annie motivated me to sit in the chair, finally, and get this summary down on paper and out of my head.

And thank you, readers, for following along! You’re welcome to visit me at my blog.

*Reprinted from my guest post on Annie Nowlin’s Lupus Chronicles blog.

Caregivers Write Your Stories (#5) / Living with Fibromyalgia Part II

In Part II of my Living with Fibromyalgia topic*, I’ll be telling you about the new “career” I started after retiring early (age 58) from teaching nursing, a new career of “everything” fibro.

Starting this adventure, I read everything my library held and everything I could find online. When I started to see duplications, I quit. I took away five things: no one knows the exact cause of fibro, each person experiences fibro differently, no single treatment will guarantee pain relief, and there is no physical deterioration with fibro. And, most importantly, the fifth thing I read was that it’s possible to learn to live with fibro.

English: The location of the nine paired tende...

English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)

It became important for me to listen to my body in order to understand and define my pain. As a new retiree with nothing to do for the first time in over twenty years, I had time to lie on the couch and “listen”. The image that came to me was that of an iron pressing down while racing up and down each arm and leg. The iron was set on COTTON, the highest and hottest setting. The iron was causing burn marks on my extremities—I was sure of it. But, no, looking at them, they looked the same. So, I poked my index finger into every inch of my body that I could reach. Wham. The area under my fingertip felt as if it had been stabbed with a red-hot poker stick straight from the fireplace. So much for the just eighteen tender points used as diagnostic information in the literature. For me, it felt as if I’d been thrown, by order of the King of Babylon in the Bible, into the Fiery Furnace. The one he’d ordered to be seven times hotter than usual.

For the next twelve years (2000-early 2011), I searched for relief of the burning pain, making the rounds of anything promising relief. Each intervention did provide temporary relief, but only one has helped over the long term. I’ll tell you about that last.

But now, I want to list for you all the things I tried, in alphabetical order for simplicity:  acupuncture, chiropractic, cranio-sacral therapy, diet (no sugar, gluten free), homeopathy, massage, medication (trials of over twenty meds), National Institutes of Health drug study (thirteen weeks requiring  six trips to D.C.), pain management program (two weeks full time), physical therapy, physicians (six), support groups (FMS), Tai Chi, therapeutic kinesiology, and therapeutic pool.

Sound familiar? I thought so.

Now, you may be thinking I’m off my rocker. Well, I am. Not only was I trying to get pain relief and some energy back, but I’m also a naturally curious former nurse who loves to study illness and its effect on people. I became my own patient! And, to add a little more spice to my burning pain, in 2006, after a fall that resulted in a broken hip, I developed costochondritis (painful ribcage), which can happen secondary to fibro. That pain has ebbed and flowed, but mostly flowed, since its onset. I still am a “touch me anywhere and I hurt” kind of person. But, if I don’t touch myself, and I don’t feel pain, that is a very good day!

I stayed at the Bethesda Court Hotel during my NIH visits and enjoyed their cozy courtyard.

My time is up for today, so I’ll continue in Part III with the intervention that has helped me most over the long term, and the other information I promised in Part I of deciding to accept—not fight—the diagnosis, and, finally, learning to live with chronic pain.

Stay tuned. And stay hopeful! Today, I live an almost normal life. Whatever normal is!

*Reprinted from my guest post on Annie Nowlin’s Lupus Chronicles blog.