Going Public With a Mental Illness

I’ve been writing for Odyssey now since February. Although it may have seemed like an odd time to take on a new obligation, writing articles for a larger audience as well as being able to promote some that I had written and published here or in other blogs has been a distraction from medical frustrations and lack of answers. It’s been fun.

This week I chose to share something that I wrote about one of the challenges I face every minute of every day: Dissociative Identity Disorder. During my childhood people called it “Multiple Personality Disorder,” but no one knew I had it.

Here’s the article on Odyssey:

Time-Sharing A Body

My life with polyfragmented dissociative identity disorder

For most of my life, I have experienced episodes of time loss and what my family and friends termed as “moody” behavior. I was diagnosed with Major Depressive Disorder, Post-Traumatic Stress Disorder, Generalized Anxiety Disorder, and Attention Deficit Disorder. Then they began adding other diagnoses: Bipolar Affective Disorder, rapid cycling type was one that just did not react to the medication because I didn’t have that disorder. This went on for decades.

I was almost 50 when I found a psychologist who specialized in dissociation and they tested me. There was no doubt. I didn’t just have any “dissociative disorder,” I had Dissociative Identity Disorder (DID), a mental injury (caused by complex PTSD) that had previously been referred to as “Multiple Personality Disorder” or MPD.

While researching this disorder, I came across this quote, “DID is arguably one of the most misunderstood and controversial diagnoses in the current Diagnostic and Statistical Manual of Mental Disorders (DSM). But it is a real and debilitating disorder that makes it difficult for people to function.” Oh how we agree with that statement!!! Although previously thought to be a rare disorder, it has been found that 1 to 3 percent of the general population actually meet the criteria for a diagnosis of DID, making it just as common as bipolar disorder or schizophrenia. Also, not all personalities are obvious changes, it isn’t like the movies or TV shows that have been produced about multiples. (Click here to read the rest on Odyssey)

Next week watch Odyssey for an article about what herb can CURE addictions!

Thank you for your interest in my writing! Have a wonderful day full of Love and Lighte!

KODAK Digital Still Camera

SNOWPOCALYPSE2019: Western Washington Buried in the Snow!

One part that hasn’t always been the most fun about living in the Pacific Northwest, is that there is rarely snow. We get a couple of inches here and there, usually in November and February. I gave birth to both of my February babies during snowstorms in 1986 and 1990. I love the snow.

I didn’t love being without power during the snowstorm for most of the weekend. But I did capture a good amount of pictures for all of my readers! Now that the snow has evolved into huge piles of slush making everyone’s lives torturous…Enjoy these memories of the snowpocalypse!

Revisiting A Bad Drug – One Year Plus After an Antibiotic Injury

One year ago Sunday, I wrote an article about being injured by Levofloxacin, an antibiotic. Those who have been affected by this class of antibiotics, fluoroquinolones, refer to these injuries as being “floxed,” short for fluoroquinolone toxicity. The technical name for the syndrome of side effects I am experiencing over a year after taking my last generic Levaquin tablet.preview-5.jpg

At the time I wrote this piece, for the first time in months, I found myself able to stand on padded shoes in the morning without crying in pain from the searing and burning sensations on the soles of my feet. I could see a light at the end of the tunnel. Within a few weeks, I was certain that light had been the headlight of a train.

Although I had finished a course of physical therapy designed to teach me exercises to keep my tendons as limber as they could be through the changes in the mitochondrial DNA within my connective tissue. In reality, those exercises helped me to keep as active as I could as long as I could.

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The paraffin the occupational therapist used on my hands looked weird but felt wonderful

But the effects that started with fatigue and burning pain and stiffness in all of the connective tissue in my body didn’t stop in February when I wrote that piece. Yes, the pain in my feet began to lessen. But what replaced the pain proved to be more debilitating than the pain itself.

It was almost as if the nerves burned out. Fizzled out. In each of the areas of my body that had experienced extreme pain: First in the bottoms of my feet and my heels, knees, then my forearms, elbows, and shoulders I started to experience tingling sensations and dullness. Neuropathy.

Having neuropathy in my feet was not fun. While within my tiny apartment, it just became easy to fall into a wall and fall from wall to wall. I didn’t leave my apartment for much, so it worked.20180522_022642_HDR

In May, my newest granddaughter was born to my baby girl and her husband. Jaina has been a joy to visit with, but my limitations when holding her have broken this grandma’s heart. The strong arms that held my first grandchild 12 years ago now fatigue quickly and I am forced to give up holding her much quicker than I would like.

In August 2018, my mom and I went to Canada. On that trip that I was confronted with the difficult reality that I was perhaps more disabled than my 75-year-old mother. That was a difficult pill to swallow. It gets tough when you want to help your mom, but then she ends up assisting you. Realities can be uncomfortable.

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Photo by Joan Slighte

When we returned the effects from driving through the smoke of several forest fires combined with me completely overdoing it to give me my second bout of pneumonia in less than a year. My body was done. I’m still getting over that illness. I have not recovered the level of mobility I had in August. In September I began the process of asking for help.

After last year’s post, I joined many support groups on Facebook for “Floxies.” They were the source of much information. The lists of supplements that could help are long and I won’t copy them here. They work for some, but not others. Personally, I have not been able to tolerate nutritional supplements, but I have received some soothing from apple cider vinegar and Epsom salt soaks on my feet.

The other medication I have used since before being injured by this antibiotic is cannabis. Please follow this link for the recipe I use to replace the Fentanyl and Percocet that doctors had my body dependant upon for seven years. I have been free of opioids for ten years this year. Even in level 8 pain daily, I have found combinations of types of cannabis that work to help manage my pain.IMG_20180209_233946497.jpg

That being said, pain is never gone. Ever. It travels. I’m currently experiencing severe pain in my eyes when I focus. Tendons in the eye, or something else? I’ll go into my reflections on seeing in a future post.  Pain is also currently in my toes and back and knee… not to mention that locked shoulder.

Better not to talk about it.

That is the best way I know to avoid feeling pain: Dissociation. I am a master at that. Or perhaps I should say ‘we are.’ Put the pain in a box and get on with life. My current hobby is Literary Theory class. Although the reading requirements make this eye thing quite annoying. Alas, I will be sharing audiobook resources soon!preview-2.jpeg

It’s now been about 18 months since the first pill and the first symptoms. My physician prescribed a power chair in October due to my frequent falls. In November, on the 23rd, while a fall-detection device was on its way to my home, I had my first major fall, resulting in my left shoulder being frozen.

I’m currently in a portable wheelchair, borrowed, while I await the prescribed power chair on order. I don’t stand up and walk unless I am feeling extraordinarily strong and I have a caregiver by my side to make sure I don’t fall.

When I think back to my life, just 19 months ago… camping with friends by a river in a tent. Something I don’t know if I will ever be able to do again…thanks to an antibiotic taken for a sinus infection.IMG_20170906_171505_253.jpg

Asking for Help

Last August and September, when the physical effects from my second bout of pneumonia in less than a year would not cease and desist and this current episode of Major Depressive Disorder was well underway, I became unable to do many of the things that I count on being able to do to be me and run my home.

Ruger’s got me

What happens when a disabled person can no longer care for themselves and their home? Asking for help seems simple, perhaps, for those who’ve never had to, but for those of us who are used to doing for ourselves, it is quite complex.

The first part of the process was as simple as checking a box when I reapplied for assistance with food and paying my Medicare premiums. I checked the “Home Health Care” box on September 2, 2018, with much trepidation. I wasn’t sure what to expect next.

The screen has changed slightly since I applied six months ago

When I hadn’t heard about the “Food Stamp” part of my application by the end of the week, I went to the office. I was told since I had checked the home health care box, my application had been transferred to a neighboring county. I was perplexed.

After some bureaucratic shuffling, my food and medical parts of the application were transferred BACK to my home county for expedient processing. I was granted Food Stamps and assistance paying my Medicare premiums. Then I waited to hear about the other box.

In late September I received a phone call from a woman around 6:20 at night, who identified herself as a Case Worker for the Lewis-Mason-Thurston office of Washington’s whatever office… I did not recognize the acronym she specified. I was already discombobulated by receiving such a call after 5pm (what can I say, I take off my headset at 5, figuring I am done with “business calls”… sigh), and I answered in a manner that reflected such.

 

Now I was astonished. It had taken three weeks for this phone call, responding to what I considered a “scream for help” to have it considered by the ONE PERSON who actually received it as ‘a mistake.’

She asked, “Did you check the “Home Health Care” box by accident?”

The tip of a wooden cane on the floor

“No, it was not a mistake,” I answered. “I need help desperately. I have not been able to recover from this pneumonia and I need help. I am having trouble bathing and dressing myself and I’m even missing church in spite of having a Dial-a-Lift ride set up.”

She answered in the affirmative and continued with my application. My home assessment for my application was scheduled for early October, about a month after I ‘cried for help.’

The evaluator was pleasant. I easily forgave him for indicating that my canine service companions were “gigantic dogs” on the assessment when he did accurately indicate the services they perform for me (in spite of being, technically a “medium” and “large” dog respectively). Mr. Evaluator had my evaluation (that indicated I was barely functioning with assistance from church friends and relatives) input into the system by late October.

Dog toy between the wheels of a wheelchair on the floor

I continued to wait.

My physician was angry it was taking so long. In mid-November, she ordered a different sort of Home Health Care. I had been unaware there was more than one type. It was so nice to finally have a bath-aide come in and help with some of the most difficult parts of being disabled.

Ironically, on the date of my first major fall (not just “ping-ponging” my way into the walls on the way to the bathroom), a device was delivered to notify my doctor’s office when I fell. They delivered it an hour after the fall that jammed and froze my shoulder. My doctor then prescribed a power chair.

When it was discovered that I leave my home for church and medical appointments, I was deemed “non-homebound” and the device was demanded back. The bath aids and physical therapist who were coming in every week for three weeks ceased. I was not eligible for THAT type of care.

I was offered my first caregiver, a person who had never held such a position, in late December. She had retrained after having worked as a bartender. She worked for 6 days before she called (14 hours before her next shift) to say she couldn’t come back to work because she couldn’t afford the gas to make the journey from the coast where she lived.

I spent Christmas and New Years without assistance. I spent a lot of time in light housecoats, being cold. My heating bill is skyrocketing.

In mid-January, a new caregiver started. Unfortunately, she did not work out. Yelling at me during a bath just adds to my menu of triggers. Yeah… Nope.

The next caregiver presented herself as having experience with mental health issues, then proceeded to gaslight me. Then, I spent an inordinate amount of time in my therapist’s office wondering if having a caregiver was worth it. I almost wish it wasn’t.

Face it, we ALL want to live long enough to become disabled, but NONE of us wants it to happen to us when we are still “with it.”

I succumb to the assessment that I am “hard to handle.” My mother and my first husband made a point of saying for years that “no one could handle [me].” Now that is getting in the way of “me” being “me.”

I have recently interviewed two ladies who I would like to work with me as a team. I pray to my Heavenly Father that the broken pieces of “my MEs” can play nice and allow things to be taken care of. Seriously. I’m tired of being naked and the dishes are piling up.

A Darkness Within the Light

About a week ago, I asked my therapist how long this particular Major Depressive Episode had been going on. Without a pause, she answered, “Since the summer.” I could have saved a bit of time and checked the publication date of my last blog post — on ALL of my blogs. I have not written except for assignments for school, since summer.

“Since summer,” the words rang in my head.

I thought back to summer. My summer was great! In July three grandmas (including me) took four grandkids on a ferry boat to Vashon Island where I spent some of my teen years. Then, in August, my mom and I trekked to Alberta, Canada to see the area where her mother was born. We also drove back through the forest fires in British Columbia, resulting in my second case of pneumonia within a year. This time I was not to recover nearly as quickly as I had the previous Christmas.

As the infection abated in early September, I found I was not able to physically care for myself. The symptoms I thought were lessening from the Fluoroquinolone toxicity had started again to worsen while we were in Canada and kept getting worse until I could barely lift my left arm. My left shoulder was “frozen.” 

I finally requested help. I had no idea AFTER you humble yourself and ask for help, it can take literally months before help arrives! I applied for home health care through the state process in early September. In November, my physician was fed up with the lack of movement on my case and made her own recommendations and referrals. It was interesting being the subject of “Adult Protection Services” at the mere age of 52. 

“Carrie the Caregiver” and me celebrating “Blue Friday” #GoSeahawks

I sit here now, on December 15, finally having employed a wonderful home health care assistant with the help of my local assistance office. I have left a large part of my privacy and pride far behind as I am venturing into the life of having a “PCA” (Personal Care Assistant). But I am finding that I am also making some great new friends as well as getting my life back.

Another change will be coming soon. After suffering several significant falls (not just saying “hello” to my good friends–my walls), my doctor has suggested that I sit down. The pain, numbness, and weakness in the tendons of my feet and legs have progressed to the point where a powerchair has been prescribed. I will make sure to post with photos when it arrives!

Jaina Anita Ellen Capley Grandchild #4 (Photo by Siobhan Capley – Jaina’s mama)

This holiday season has been a dark one for me, but I am coming back into the light.  This will be the first Christmas for my newest granddaughter, Jaina Anita Ellen Capley, and I plan on enjoying her and the rest of the grandchildren to the fullest!

I hope everyone reading this has a wonderful holiday season. Please don’t let the shadows pull you in.