Deer friends...

I lay in bed last night, waiting for sleep.

And I began to cry. 

I feel so defeated. Defeated. 

More tears flowed as I cataloged my losses.

Mainly friends who have gone missing. 

Though I'm really the one who went missing.

Then I counted the few friends who I still communicate with. 

I really am not able to do more. 

Neurological fatigue simply doesn't allow it.

This morning, I awoke to tears.

I pushed my weary body out of bed.

I opened the blinds.

A lone deer was in the back yard.

Meandering. 

Sniffing the ground. 

She came almost, all the way, up to the deck.

My heart smiled.

The other night, three doe and two fawns were laying in the back yard.

They bring me comfort.

I'm still dealing with shingles.

The boils are gone, along with the intense pain.

But the fatigue continues, multiplying my normal fatigue.

And my head, inner ear, and jaw still hurt. 

On my right side.

Low level pain. 

And they itch.

And a sore appeared in my mouth.

On my top gum, right side.

Another shingles gift, I reckon.

My next epidural is on November 30th.

It will be number 32. 

I wonder how long Job was sick?

Bitch on a bike? No... ~ Space Pirate? Yes...

I originally posted the piece below on 11/16, in the morning. By evening, I was feeling self-conscious about it, a bit too vulnerable. So, I put it in draft. I've been known to do that. I also wanted to edit it. I've been know to do that too, a lot. 

I wrote it on 11/15.

~*~

11/15/20

Can I make sense of these journal entries? Sense enough to put together something to maybe post on my blog? Something to read aloud to my fellow writers in the phone/Zoom writing workshop? I do the call-in-phone option. Someone would have to drag me resisting and grunting to do Zoom. 

I want to fall in love with writing again. It has become laborious to put together pieces for publishing. Anymore, I only "publish" on my blog and in the workshops. My blog gets very few readers. It used to get more, but in February, 2015, I disabled the search engine function.  

I thought this morning, Perhaps, perhaps, perhaps writing has become laborious because of the amount of detail that goes into my selfcare each day. Maybe I can't paint a picture with words because my detail allotment is drained. Maybe the workshops will help me. Help me to write again, beyond journaling. But maybe journaling is all I can do. Write in less detail because I already know the details.

I used to love words. All kinds of words. And etymologies. And making up words. I don't know the names of many birds or plants or flowers. So I tell myself, If  I were to name this flower, I'd name it Starburst. My made-up name is just as legitimate as whomever made up the name that stuck.

I guess I still love words; I just play with them less. 

When I was a Bible believer, I'd spend hours on word studies. Using a concordance and lexicon. Big, heavy, important books. Before the days of internet. 

The internet. A net that catches things and then dumps them onto a screen. Mostly I'm thankful for the internet, and mostly I'm not. 

Writing used to be my passion, my escape into reality. Sometimes I'd feel guilty because I spent so much time journaling. And it saved my soul, maybe even my family. I have over 20 journals. Why do I keep them when those deemed more wise than I have advised me to toss them or burn them because they put off some sort of negative energy as they sit on a shelf or recline in a box. And that negative energy keeps me stuck. 

I don't fully embrace that belief, though it kinda might be true. But for now, I keep my journals. 

The movie, The Martian. The scene where Mark Watney passes out as he hits 12 Gs after being launched from Mars in the stripped-down MAV. MAV stands for "Mars ascent vehicle." Right before he passes out, he's swimmy. His head rocks from side to side, his eyes roll back, and then he goes under.

That swimmy moment is how I feel on my bad days, during my roughest weeks. Like I'm going to collapse. This has been a regular occurrence for the past eight years. At first it was alarming. Now it's part of my normal. In my worst years, before getting my toxic heavy-metal levels down,  I'd also feel like all my organs were going to fail.

But my organs did not fail. 

And I've never collapsed. 

One of my most difficult symptoms is cognitive fatigue. Most people call it "brain fog;" I call it "brain mud," because it's so thick. The muddiness takes turns with "scrambled eggs," a different brain feeling -- blobs of separated, scrambled clumps lodge around my brain. 

And then there is the "vortex" -- like a dark tornado but it goes down instead of up -- and I'm caught in it as it tries to suck me into its void. I kind of relax into it because I know fighting it just makes it harder to endure. It's like the scene in the Wizard of Oz where Miss Almira Gulch, the mean bike lady who becomes the wicked witch, rides her bike and then her broom round and round while she's caught inside the tornado. 

I don't want to be the wicked-witch or the bitch-on-a-bike. 

But I like the idea of being Mark Watney, Space Pirate. 

Spontaneous eruptions...

This is my canvas. 

I can throw upon it whatever I desire.

I can display it.

Frame it.

Trash it. 

Currently I'm living with shingles. It began Wednesday, 10/07/20. That morning, as I was going through some of my stretches which I would call routine, and they are routine, except that I don't perform them as routinely as I'd like to. I would say as routinely as I "should," except for that word, "should." My "should" antennas wiggle reminding me to mind my "shoulds." That is to limit them because there are soooo many "shoulds."

The best mental health provider I've had, Dr. McColloch, who I greatly miss since he's retired, addressed my "shoulds" back in 2000. My should-basket was too full. "Unrelenting standards," he called them. So, I changed my vocabulary for awhile to eliminate the word "should." Changed it to "it'd be nice if..." That change helped me tremendously back then and continues to help me now.

On Wednesday, 10/07, as I performed my it'd-be-nice-if-I-stretched-more-routinely stretches, I noticed soreness in the nape of my neck, down to my shoulder, on my right side. 

What's this? I wondered. Did I favor my right side when I was biking yesterday? 

My left low-back-hip area had become exacerbated on Saturday, 10/03, from it's regular continual low-level pain to almost a spasmodic pain, for a day. Thus I wondered if I'd favored the right side when biking. My left hip is the hip that has endured trauma from the now-replaced defective, metal-leaching hip implant. Back in 2017ish, the surgeon told me I may always have low-level pain in that area, due to the trauma. So, I live with it and manage the best I can. 

Or is it just another weird pain springing from my right side?

Back in May, I'd had an upper-back spasm-spot, in my right lung area. It was so bad, John had to stay home from work that day. Long story short, I ended up with some breathing issues and had to pull out my nebulizer which I rediscovered was broken so the doc's office issued me a new one. The PA at my doc's office ended up sending me to the ER for a Covid-19 test. At my ER visit, I was given quite the work up. (My heart is in good shape.) Thankfully, my C-19 was negative. But the lung issue, shortness of breath, low-grade pain persisted for a few months, slowly clearing up. Still don't know what that was.

And here was my right side again, with a weird symptom. Sometimes I wonder if these odd, spontaneous symptoms manifest because my body is pushing out heavy metals that have been stored in fatty tissues. Probably not, but I do wonder. 

By Friday, 10/09, the soreness in my neck-nape was gone, but had morphed into a sporadic shooting pain up the back of my neck, into my head, and toward my temple -- in a direct line, not spread out. And  the back of my head was feeling bruised on that side, like I'd been hit in the head with a blunt object. The pain in my left hip had ameliorated for a couple days previous only to become exacerbated again on Thursday. I felt like one of those black ink drawings of a human with pains springing out of body parts. 

On Friday, I saw my acupuncturist, who is also an herbalist. The treatment really helped my low-back-hip area, and he mixed me up some pain herbs from me to drink, to add to my regimen. I went for a 20-mile bike ride after my acupuncture session. 

By Saturday afternoon, I had a small lump on my head in the area where it felt like it'd been hit. Puzzling. 

Why didn't I go to the allopathic, western, medical doctor? Because I have lived with lots of weird, spontaneous nerve pains for years. They appear, sometimes morph, sometimes disappear. They come, and they go. I've learned to wait, instead of jump, to see what they do. 

Saturday, I went online and read about blood clots and aneurysms, wondering if I should go to the ER. I've had lots of ER experience and really don't like going. My symptoms didn't match either clots or aneurysms. I said to John, somewhat jokingly, "Do I have a spontaneous concussion?" I've had a spontaneous black eye in the past few years which we never found a cause for. 

As I lay in bed late Saturday night gently guiding my fingers over my tender scalp,  I felt two small sores. Did I get bit by an insect biking on the New River Trail Tuesday? 

When I awoke Sunday morning, I had boils on the front of my neck, which made me wonder more about an insect bite. Then I thought, Is this shingles? But then dismissed or got distracted from that thought until suppertime as the boils began to appear in my ear and John said, "I wonder if it's shingles?" 

So, I looked up shingles and was relieved that my symptoms appeared to match shingles. "I think it's shingles." After I moment I added, "It's something normal!" Except it was in head and on my scalp instead of the typical shingles-torso-waistband area. I thought it ironic that it's "all in my head." 

I was at the doc Monday morning. Due to Covid, we met outside in the back of Edward the Explorer. That's what I had to do in May too. She confirmed it was shingles and I began valacyclovir, an antiviral drug that addresses shingles. Like other antivirals, it needs to be started in a certain window of time to be effective. I was in the window. 

As the shingles progressed and my inner ear began hurting and I communicated with my doc through my patient portal on Wednesday,  we upped my regular prednisone dose from below 10 mg to 60 mg. Shingles in the ear can cause Ramsay Hunt Syndrome which can cause deafness. Adding steroids to valacyclovir  can help keep that from developing. 

I again had an Edward the Explorer visit with the doc on Wednesday so she could look at my ear drum. She felt confident Ramsay Hunt would be held at bay. *knock on wood*

But, now the head pain was spreading to my frontal area, all the way across my forehead. It was low grade and I thought maybe it was from wearing my glasses askew due to the boils behind my ears. So I decided not to do that anymore. 

I began to feel really bad in the wee morning hours of Thursday. The frontal head pain was stretching down my face to my teeth. And nausea had set in, like a migraine. I was miserable. 

I called the doc Thursday morning. The nurse called back within an hour, and we started me on gabapentin. By Thursday evening, the frontal head pain had eased. It's still there, but not debilitating. 

Yesterday, John and I went on a Blue Ridge Parkway drive. Typically the BRP refreshes both of us and where we go in Virginia isn't too crowded, even in the fall, as far as crowds go. But yesterday, was different. We'd never seen it so crowded in Meadows of Dan and at Mabry Mill and on the Parkway itself. Our back-route drive up to and back from the BRP was more refreshing than the Parkway itself. 

On the way home I told John, "I need to bathe and cut my nails after we get home." Two self-care tasks that are no longer monumental, but still require effort beyond what an abled-body would require. 

John replied, "Remember when I used to have to help you cut your nails? Must have been over a year I had to do that." 

"It was at least a couple years," I replied.

A nice reminder of how far I've come.