Friday, April 7, 2017

The Successful Patient: Writing to Heal

In the May 2017 issue of The Writer, Gail Radley writes about the health benefits of writing a journal. As I read this article, I thought of my own journal, neglected for the past 2 years due to a life far busier than I really wanted. Before financial distress and finding first a part-time job then a fulltime job, I used to write in my journal daily after lunch for about an hour. If I missed a day, I felt uncomfortable, like I'd forgotten something and could not remember what. During the last 2 years, the guilt about not writing has gnawed at me, but the time just never opened up enough to push it into my day again. That may change as my life settles down a bit and I'm not scrambling in 10 different directions to pull in revenue to pay bills.

Radley examines the healing power of writing a journal on a person's mental state. I could definitely use some help in that area! While no substitute for a human therapist to talk to, who will listen compassionately and be the guide to self-discovery and self-knowledge, journal writing can act as a safety valve for letting off steam on bad days and celebrating on good days.  It's a great way to work through problems, weigh decisions, and try to make sense of the world around us.


I've kept a journal since I was 11 years old, and over the years I've learned that how honest I am with myself as I'm writing in the journal determines if I gain psychological and emotional insights about myself from writing. It's so easy to get caught up in the everyday details of life, record what I've done, seen, heard, instead of what I thought of it all. Including what I've thought of myself. For me, my journal is the place to ask questions that are bothering me, set personal goals, and record important moments in my life. It has helped to keep me sane and focused during challenging times. It has been a valuable friend while I've gone through therapy for depression, PTSD, anxiety, and other issues related to childhood trauma. So, I agree with Radley that writing in a journal can be healing for the mind and soul but only if the writer is honest with herself.

Can writing in a journal help physical health? The mind has a powerful connection with the body, and we know that emotions can cause physical responses. If writing can calm the mind, can exorcise anxiety and ameliorate depression, then the body will not suffer the physical effects of these things. I know that for me, I feel better physically when I'm writing in my journal on a regular basis. And I support that writing with other things that enhance the effect such as meditation, qigong exercise, and walking.

It's important to remember the mind-body connection, and to pay attention to physical clues that the mind is distressed. It's especially important not to stuff feelings and writing them out in a journal can really help.  Expressing anger at a co-worker in person may not be the positive, constructive experience that you might want. Walking away, cooling down by writing down your thoughts and feelings can help gain distance from the situation and bring it into clearer perspective. What was your role in the situation? What was the co-worker's role? I remember saying to an acquaintance once who had angered me that my response had not come out of the blue as she was claiming. There had been a cause, and it had been something that she'd done. Sometimes it can be difficult to see a true cause in the midst of a strong emotional response. And sometimes the true cause of a person's anger is something that person has done, or is guilty about, or regrets, or any number of things, instead of what the co-worker said or did. Writing can help ferret out these hidden causes.


How to write a journal? It's actually very easy.  For example, I buy regular 3-subject spiral notebooks and write in them by hand using different colored pens. Some people use blank books. Others use the computer. There are bloggers who are actually keeping a journal through their blog about a specific activity or time in their lives. It doesn't have to be fancy, but it does need to be a form with which you are comfortable. If you feel in need of help to get started, there are books out there that can get you going. I just searched on "journal writing" at Amazon, and 50+ pages of titles came up. In the past, I've used At a Journal Workshop by Ira Progoff and The New Diary by Tristine Rainer to help me. 

Time for me to get back into journal writing myself.....


Friday, March 31, 2017

Music Comforts and Heals: Sharing Notes #WATWB





For my first post in the We are the World Blogfest, I'd like to write about a wonderful organization that brings music to patients in Chicago area hospitals. The organization is Sharing Notes.


I found Sharing Notes in the fall of 2013 when I was setting up a fundraising project at Kickstarter. They had set up their own fundraising project.  I loved the idea of bringing music to people in hospitals. I have spent my share of time in hospitals, and I know how much music can ease the stress and anxiety of being a patient.


Music touches the human heart, calms fears, lowers blood pressure, and soothes the mind. Sharing Notes musicians bring a lot of love and compassion to people with their music, and a lot of fun to children who may not have had much fun in the hospital.

For more human stories of the heart, visit the blogs listed under "This is a Blog Hop" here. #WATWB bloggers publish their contributions to the blog hop on the last Friday of each month. Thanks to this month's blogfest hosts:

Belinda Witzenhausen, Lynn HallbrooksSimon Falk, Sylvia McGrath, and Damyanti Biswas.


"We are the World Blogfest" is a blog hop of bloggers dedicated to posting stories "that show compassion and the resilience of the human spirit. Sharing these stories increases our awareness of hope in our increasingly dark world."


Thursday, March 16, 2017

Taking Perceval to the Next Level

As my regular readers here know, I am a grudging member of The Working Poor in America. I work part-time and search for a fulltime job. A friend helps with paying my rent so I won't be evicted. About a month ago, I bit the bullet and launched a fundraising campaign at GoFundMe. This campaign has two purposes:
  1. To pay off the debt I have left from publishing my novel Perceval's Secret three years ago. 
  2. To raise the funds to publish Perceval's Secret as a paperback and launch it.
In the fall of 2013, I had a month-long Kickstarter campaign to raise the funds to e-publish Perceval's Secret. At that time, I raised over $3000, but because the campaign did not achieve the goal of $5000, I received none of the money.

I chose to take the risk of going forward anyway with publishing Perceval's Secret. All the expenses for the editor, book cover design, manuscript conversion to 2 electronic formats for publication, and marketing for the book launch went on a credit card. I used a $0 interest promotion offered by the credit card for the marketing expenses. Every month, I paid far more than the minimum payment, but the interest charged on the non-promo part really hurt my efforts. Then I reached the end of the promo period and the entire amount on the credit card was now earning interest for the credit card company.  I still continued to pay monthly more than the minimum.

Finally, last year, I transferred the balance on that credit card to another credit card to take advantage of another $0 interest promotion. That promotion would last 16 months. The promotion's end fast approaches. I'd like to finish paying off the credit card debt before the promotion ends so that I won't end up feeding the interest monster anymore.

While paying off the debt is my primary purpose for this GoFundMe fundraising campaign, if I manage to raise more money above the $5800 I need for that debt, I'll use the "extra" money to publish Perceval's Secret in paperback.

One person e-mailed me about 10 days into this fundraising campaign to inform me that I was "begging online." It disturbed me that he chose to look at it that way, even though it's probably a valid perspective. Others who have already donated to the campaign have chosen to express the perspective of helping a friend, a good cause, or giving an author a leg up. 

Perceval's Secret has garnered good to excellent reviews at Amazon and on GoodReads. I believe strongly in this novel and the 5-book series for which it is the first installment. Sales have not been what I'd hoped despite my marketing and promotion efforts in 2014 and last year (I was quite ill in 2015 and could not work as much on it).

I'd love nothing better than to have sales increase and keep increasing. So if you'd rather help out by buying Perceval's Secret, reading it, writing a review at Amazon or Barnes & Noble, and GoodReads, I'd love it! And especially if you encouraged others to buy and read the book, and post reviews. Go for it! To pay off the debt, I'd need to sell 2,850 e-books by the end of May!

Click on these links to buy Perceval's Secret:
Amazon Kindle US (but also available internationally on Amazon)
Barnes & Noble Nook
Kobo International

Click on this link to donate to the fundraising campaign:
Taking Perceval to the Next Level

For all those generous spirits who donate, I will post their names on the "Appreciation" page at the Anatomy of Perceval blog.

Also, if you are on Facebook, like the public The Perceval Novels Facebook page to find out about special fundraising promotions with "rewards" that I'll run through Facebook.

To all who choose to be generous, my heartfelt thanks! (And if you buy Perceval's Secret, I hope that you'll enjoy it!)

 

Saturday, March 11, 2017

Would You Speak for Peace?

A blogger friend, along with a group of other bloggers, has set up a blogfest/blog hop in order to promote positive news. We are living in a dark and negative time, especially in America which now has a man in the White House who thinks in terms of conspiracies and disasters, who calls the press "enemies of the people," and who routinely lies and flouts established law. He has also surrounded himself with like-minded people to serve his purposes.

This blogfest is called "We are the World" #WATWB. Its goal is for member bloggers to post positive news once a month, comment on each other's posts, and share each other's posts on Facebook and Twitter, and other social media. For any of my readers who are also bloggers, here is the originating post with instructions on how to sign up, along with the badge to put on your blog.

I have been thinking about this blogfest for the last few days, going back and forth in my mind whether or not to join in. I really like the goal. I like the purpose. It's not asking for a lot of posts per month. And if it helps to change the focus of thinking out there, I do support that. So why am I dragging my mental feet?

Perhaps my hesitation results from the difficulty I've been having lately writing anything. A Zeitgeist now exists that reminds me a lot of the despair and darkness Ursula Le Guin wrote in the third novel of her Earthsea Cycle, The Farthest Shore. In that fantasy, the Archmage Ged of Earthsea searches for the cause of the despair, darkness and forgetting that is spreading across the Archipelago. The cause turns out to be one man whose desire for immortality and what he does to achieve it have poisoned the world. Magic saves the world in that story, but there is no magic in our world.

Unless you believe that words have magic. Words that express positive ideas and draw attention to positive events in the world. Or that the emotional light that we all have within us can be used to shine through the darkness. Some call that light "love," others call it "compassion" or "kindness." Buddhists believe that we are all connected, that how we treat others will come back to us in kind in this life, not in another. What goes around, comes around. Treat others as you would have others treat you.

Sirius, or Dog Star, the brightest star
An especially bright human light shines through the Arts. While those who would live in darkness devalue the arts and want to defund them in an attempt to extinguish that light, it's important to let the light shine. I think if I would participate in the "We are the World" #WATWB blogfest, I would focus my attention and my writing on stories about the positive effects of the arts or positive stories about the arts. So perhaps you will see what I hope will be bright lights at this blog once a month on the last Friday of each month in the future.

Stay tuned....

Monday, February 20, 2017

The Successful Patient: What's it like to have a Chronic Illness?

We've all had the experience of acute illness -- a cold, the flu, food poisoning, or infection. These illnesses are short lived.  While there is no cure for the common cold, we know that our bodies have effective methods for stopping the virus in its tracks. It usually takes about a week, but then we're fine.

A chronic illness is an illness that will not go away. It has no cure. Modern medicine often hasn't a clue at what the cause is. In fact, in many chronic illnesses, the body and its immune system are the culprits. These are the autoimmune diseases and I've written about autoimmunity before. Treatments usually involve managing symptoms, or trying to stop a disease process to make the disease inactive (remission). But even if the chronic disease is inactive, it has not been cured and will return if treatment is stopped.

What's it like to have a chronic illness? In my personal experience, I've found that most people haven't a clue what it's like and so they make wrong assumptions, say inappropriate things, and ask irrelevant questions. Using myself as an example, I'd like to provide a glimpse into the life of someone with a chronic illness.

Daily Life

I wake in the morning and my first thoughts focus on how I'm feeling. When I stand, am I stiff? Do I have pain? Do I have nausea? Are any joints swollen? How's my balance?  I have a routine now that I follow to get into the day that includes some stretching to help alleviate the stiffness, moisturizing my mouth and eyes against the dryness, and taking my scheduled medications. It's important that I eat well during the day, i.e. no junk, no sugar, and follow my diet to insure that it remains quiet. It's also important that I eat by certain times due to my medication schedule.  I have a medication that must be taken on an empty stomach twice a day. The morning is no problem, but the evening can be. In the morning, I also have a schedule for the different meds before and after breakfast. By taking my medications correctly, I increase my success at managing symptoms and being able to go through my day well.

What happens when one of the diseases flares up? Well, I just had that happen with my Interstitial Lung Disease (ILD) which was triggered by a new medication. When the ILD flares, I can be quite ill and it's best if I stay home and take care of myself. When the psoriatic arthritis flares, I'm in extreme pain from the affected joints. Sometimes pain meds will stop that pain or at least dull it, but sometimes they have no effect. It's really hard to walk when the joints in my feet are inflamed. It's been years since I've had a flare of the Sjogren's, and I'm thankful for that. It can affect my inner ear and balance, my swallowing, and can give me a mighty sinus headache as well as swell my salivary glands. Not fun. People see the swollen glands but otherwise, the only chronic illness I have that people actually see is when my psoriasis flares which is a prominent, red, pustular skin rash on my scalp, along the hair line, on my arms, back, legs, palms and feet. I've written about dealing with the fatigue that goes with autoimmune diseases here and here.

So I have chronic illnesses but rarely are visibly sick. I've heard comments such as "You don't look sick" or "You're faking it -- you look fine." Doctors and nurses have told me that they can tell when someone is faking it in a variety of ways, especially in the person's behavior. The average person doesn't have that expertise. What I usually do in that situation is to explain the disease that is flaring, why I look "fine," and why I'm not fine. Most people with chronic illnesses are not visibly sick. Please don't assume that if someone doesn't look sick that they aren't.

At work, I must pace myself in order to conserve energy. I take with me whatever I need to help me deal with symptoms that could interfere with my job. This includes nasal spray, eye drops, throat lozenges, my inhaler, and OTC meds that help me digest food. I do not talk about my chronic illnesses at work, unless I'm out sick with one. Very few of my co-workers know about them. And as long as I take care of myself, there's no reason to bring them up. As long as I take care of myself, I'm rarely out sick.



Doctors and Medications

I have a medical team not just my primary physician. In order to stay ahead of my diseases, I see my doctors usually every 3-4 months when my diseases are active, and every 6 months when they are not. Most of my medications are taken orally, but I do take two that are administered by infusion in a doctor's office, and one by intramuscular injection that I do myself.  My infusion appointments occur every 8 weeks and every 12 weeks.  If I'm lucky in scheduling, they are both due at the same time, but usually they're not.

It's important to be committed to keeping medical appointments and to take medications according to instructions. Deviating from this can cause diseases to flare or other problems.  I know that I do as well as I do because I keep my medical appointments and take my meds.

In an effort to have some control over my body and health, I also have tried alternative therapies. Often with my doctors' encouragement. I've tried Reiki, massage therapy, Tai Chi, Falun gong, meditation, and different kinds of physical exercise. I've also attended support groups for people with the same diseases I have where discussion topics have included alternative therapies, diet, holistic approaches, and chiropractic medicine. I've found Reiki, Falun gong, meditation, and physical exercise the most helpful to me.  I've also developed my own diet of safe food that doesn't cause a flares. 

Medical Insurance Companies

Medical insurance is a business, and people who work for insurance companies are tasked with saving the company money, not paying it out. So medical insurance companies do not like people with chronic illnesses because they submit the most claims and cost the insurance company the most money. So insurance companies will play a passive-aggressive game of stalling and using bureaucratic language that confuses rather than clarifies. Medical insurance companies are not your friend, especially if you have a chronic illness. Don't believe any of the niceties they include in their correspondence or brochures, their advertising or through customer service. When they claim to be looking out for the patient and the patient's health, that means that they are looking out for themselves and their bottom line, not the patient. Everything they do is to save money for them.



In my experience both pre- and post-ACA, dealing with insurance companies has exacerbated my symptoms and hurt my mental health. It's important to stay as positive as possible when you have a chronic illness, and there's nothing in the way insurance companies treat their customers that is helpful to staying positive. They claim that they are not practicing medicine, and yet they also claim in their written materials and on their website to be actively determining if a treatment or medication will be effective for a patient, even after the patient's licensed physician has already made that determination. It's all about money, folks. It has nothing to do with the welfare of the patient, but how much the patient will cost them.

For someone with a chronic illness, it can be almost a fulltime job to deal with medical insurance companies. On top of everything else, of course. Our current system definitely needs reform. The ACA was a solid beginning, but what the Republicans are proposing now would set patients and doctors back 20 years to a time when medical insurance companies had complete control and power, especially over whom they will insure and how much they'll charge.

Chronic illness is expensive. If I did not have medical insurance, I would be dead because I could not pay for all the medications, the hospitalizations, the clinic and doctor visits out of pocket.  No one can.

Depression

Depression is a side effect of chronic illness, and can be serious.  It is unbelievably difficult to live with pain, with extreme symptoms, day in and day out. More often than not, doctors run out of treatment options or insurance companies refuse to cover the treatments doctors have prescribed. The anger and frustration a patient feels about all these things needs to be expressed not internalized. Anxiety about the future is also a common occurrence with the chronically ill.

Depression has its own set of symptoms that need to be treated. I took an anti-depressant for years for anxiety as well as went through talk therapy. I'm no longer doing either. But that doesn't mean that the depression and anxiety cannot recur. People who live with chronic illness, whether one or multiple, are incredibly strong but they still need emotional and psychological support from family and friends when they're not feeling well.

Finally

No one wants to be sick. I know of no one who enjoys having a chronic illness. And the thing is, chronic illness occurs whether or not a patient has been healthy all her life, takes care of herself, or not. The patient has no control over whether or not the chronic illness hits her. A great deal of medical research is going on right now looking at the genetic component of chronic illness, figuring out each disease's process within the body in order to develop new treatments and maybe even to find a cure. Until then, I and all the millions of people with chronic illness in this country power on, doing everything we can to take care of ourselves, and ignoring the people who are ignorant, insensitive, and boorish toward us.


May you never, ever have to deal with a chronic illness.