The Painful Pagan

The Wheel Turns

Industrial Remains by Mark Camp is licensed under CC-BY-SA 2.0

The Wheel of the Year is turning again!

I’m happy that the days will start getting longer again, but I am struggling with the season changing for my mom, as well as for me as a daughter.

You see my mom was originally put on hospice care the weekend before Thanksgiving 2018. In June of this year (2022), when Medicare’s rules changed, they took her off hospice and placed her on palliative care. Again, the weekend before Thanksgiving this year, they put her back on hospice care.

I feel like I have whiplash!

Mom seems to be slowly and steadily getting closer to her end here on this earthly plane, but with that ending will be new beginnings. No longer will Mom be the matron of our family. That torch will be passed to me.

What kind of impact will I make on our family? My mom’s Lutheran faith dominated her life, and then mine, for the first 17 years of my life. However, that was never truly my faith.

I found my way to my pantheistic eclectic pagan faith gradually over all the years of my young life. My father was a religious history buff, so I was exposed to his writings on the subject of comparative religions at a very young age.

“What will my traditions be going forward?” I find myself asking today on the Winter Solstice.

What have I done to create traditions for us? Not much, I must admit. My hubby grew up without any religion at all in his house. He didn’t even find out his family was Catholic until his mom let us know at our rehearsal dinner 24 years ago. As a consequence, my hubby doesn’t think any organized religion has a place in our house, so our son hasn’t grown up with anything either.

When I told our son that I’m a witch, the first thing he said was that I couldn’t be a witch because I’m not evil. Then, when I tried to explain the concepts of modern neo-paganism to him, he couldn’t understand magic that wasn’t “real,” like on his cartoons.

I felt like a failure as a mom.

So, what have I done about it? Nothing. Not a damned thing. What do I want to do about it? Start pulling together simple rituals our little family of 3 can do together, and then actually do them.

Problem #1: My own ADHD and serious brain fog from all my other health problems.

Ive got a huge library in the basement of Wiccan, Pagan, Ceremonial Magic, etc books and magazines I could pull from for reference, plus the inter-webs to search. However, I can’t concentrate long enough to do the research and pull things together, let alone…

Problem #2: Having the energy to do the basement stairs to get to my magical library, let alone…

Problem #3: Having the energy to actually pull the needed components together, and then…

Problem #4: Having the gumption to do the actual ritual work!

For someone with chronic illness, it’s more draining to do all that then what I’d personally get out of the ritual working, on a physical level.

However that leads me back to the issue that my son laughs when I tell him I’m a witch, and has no clue what kind of spiritual connections I have to the world and people around me. I have left him with no framework for any of the traditions we are trying to pass down to him and that makes me sad. Very sad.

Today I went to see my mom at her facility. I sang a bunch of holiday songs and carols to her and her roommate. This apparently took Mom back to Christmas Carol singing at her next door neighbor’s house on Mark Twain Street in Detroit in the late 1940s. The whole Carey family was musical and played instruments. My mom and her whole family, being too poor to afford instruments or lessons, had the one instrument everyone has: their voices.

And their voices were all beautiful!

So, when I tried to bring her out of the reverie she appeared to be in, I was told that she guessed we needed to leave the Carey’s house and go back next door to our own house.

She was back in that time, at that place, and she had taken me and my singing for her along with her, into her memories. I must admit, I was a bit envious that I couldn’t see us together in her mind, back at the Carey’s house for Christmas Carol singing.

But, I was so honored she took me along.

And the Wheel turns. Past, present, future. Turning, turning, turning…

Third Time’s the Charm? Covid, Pt III

Well, I had it again, that most dreaded plague, COVID-19.

I can’t believe this!!!

I was exposed to someone who was Covid positive Tuesday, Aug 30th. She didn’t know she had it then, and because she has an autoimmune issue, she wears a N-95 mask when outside her house the whole time. However, it turns out her housemate also had it and was not wearing a mask.

I tested negative 4 times, even though I knew I had it (I am beginning to recognize how it feels when it is coming on), and one of those was a test at my Doctor’s office that they sent out to the lab with a 24 hour results turn around (PCR Test, I believe). The other three negative tests were 2 different brands of home testing kits.

I was starting to feel better Monday and so did not test then. It wasn’t until Tuesday, Sept. 6th, in the evening that I started to feel worse again, with a persistent dry, yet chesty, cough. Finally, at 3 AM Wed morning, I tested again, as I couldn’t sleep because of the cough.

Sure enough: Positive.

It wasn’t even a “maybe this might be two lines.” No, it was glaringly positive.

Thinking I might be positive, when I started coughing Tuesday evening, I sequestered myself in our guest room/office/my yarn room where we still have my mom’s extremely comfy mattress on top of the furniture store’s adjustable bed frame. Add one of my wedge pillows, and I can sit up perfectly straight to knit, or easily lean back for a nap in comfort.

Yes, I am getting this good at making sure I do not unnecessarily expose my family members, and making sure that I am comfortable 24/7, alone with a TV and streaming stick, my current knitting project, my journals, and my MacBook, all with chargers and cords, sequestered away, near the bathroom and kitchen, to make sure I do not pass on the plague to my hubby and son. (So far, so good. Both tested negative, and neither got any symptoms.)

You’d think that the break of being away from everybody would be welcome, especially when I was sick, but I don’t roll like that. No matter how sick I am or what I have going on, I crave human comfort and touch. Really, really need it. But I couldn’t risk getting a hug from my hubby, and it nearly drove me crazy.

When it was finally safe, about one week after I had tested positive, I collapsed into my hubby’s arms, crying with relief. Finally I could touch and be touched in return. I never realized how integral touch is to my mental well-being until I could not touch or be touched in return. It was awful!

Now, a month later, there is the intensifying concern of Long Covid. Every time I wind up Covid positive, the exhaustion is more intense than before, the recovery time to feeling functional again gets longer, and my breathing and asthma suffers for it. My fibromyalgia symptoms flare up more easily. My fatigue and brain fog symptoms intensify with no end in sight. It just plain sucks!

I’m done! Stop the Long Covid roller coaster; I want to get off!

What wonderful nugget of wisdom did I gain by having contracted Covid again, you may ask? None. Nothing. Zip. Nada.

There is no rhyme or reason to Covid. There is nothing to gain from having contracted Covid three times. Do I have more sympathy toward those that have had it just because I’ve also had it? Maybe a bit, but I was already an empathetic person who could put myself in another’s shoes and gain a bit of their perspective. It comes with being a sensitive and caring individual. So, did I really gain anything that was more than I’d lost to Covid? Definitely not. Covid is so far indebted to me, at this point, it’s not even remotely funny. But it keeps rearing its ugly head regardless.

Do I have to be alright with this virus’s invasion of my body? Certainly not. Do I have a right to be upset that the virus invaded my body again? Certainly yes. Do I have the right to be upset at those friends who unknowingly brought the virus into my life once again? No. The virus is everywhere these days, in its more mild, yet more virulent form, still ruining the lives of those it touches, through no fault of its own.

It’s a virus. It does what it does. Period. End of story.

Once More, Unto the Breach: Covid, Part II

Well, I got it again. Covid. That horrible virus that has changed my health for the worse once already. It came back.

I originally got Covid in mid-March of 2020. I had emergency bowel resection surgery with a temporary Ileostomy creation on March 7, 2020. When I got home from that and my ICU nurse hubby went back to work, they didn’t realize Covid was in the hospital yet. And since it was before the days where all health care workers wore masks all the time, a patient coughed in my husband’s face and, as it turn out, the patient had Covid. My hubby then brought it home to us.

Covid with a brand new Ileostomy was hell! I couldn’t cough with a pillow over my abs too easily, or I would have burst my poop bag! I just had to let myself cough.

And cough I did!

I wound up, after 6 weeks of almost non-stop coughing, a Parastomal Hernia the size of a soccer ball sticking out of the right side of my abdomen, behind the Ileostomy.

As soon as they could, May 29th in Michigan, they made the reversal surgery appointment. But the 6 weeks with the hernia before the surgery, and then for about 6 weeks after the reversal, I was basically on bed and recliner rest. Not good for moving around to hinder the development of clots.

So clots developed. I was in the hospital twice with multiple bilateral pulmonary embolisms. The first time was in October of 2020. The ER doc said it was so bad that I was a day or two away from permanent heart damage because of not knowing I had them.

The second time was on February of 2021. I got out of the hospital that time on Valentines Day. So I am now on blood thinners for the rest of my life.

After getting out of the hospital the second time, I started seeing a pulmonologist for my never-before-had asthma. Rather severe asthma. Another Long Covid gift, along with my clotting issues, and a host of other smaller issues.

Now, Covid: Part II just being over with, I am back at the doctors office again, unable to breathe. I am short of breath, even with having taken all my asthma inhalers, it is painful, dizzying and scary as hell!

Turns out it is an acute asthma exacerbation and now it is steroid pills and albuterol in the nebulizer. But I have to be super careful while on steroids, as it can mess with my diverticulitis. It’s all a balancing act, and a precarious one, at that.

So, once again, into the breach of Long Covid!

All The Things, Darkly

Darkness. Things seem so dark. There is nothing but darkness inside my head.

I have been so depressed, I haven’t been able to function. I feel like this darkness is slowly killing me. Not in the literal sense, but in how it is sapping my spirit, my will to live my life with joy or contentment. I am completely apathetic and do not care what happens to, or around, me.

Spring seems like it would be a joyful time. Yet, every year, spring after spring, it is the same. My Bipolar I Disorder swings around and lands on darkness. You’d think happy-go-lucky mania would be the order of the season, but not with me.

So, here I sit, nothing holding my interest. Things I need to get done piling up around me (sometimes literally piling up around me), and I am off in lala-depressed-I-don’t-care-about-anything land.

Darkness permeates every fiber of my being. I can see nothing but darkness ahead and darkness behind me. There is so much weighing on my shoulders, I shouldn’t be surprised that I am like this.

Mom on hospice care for over 3 1/2 years now
- I am sole decision maker, as my only sibling passed away back in 1994 and my dad has been gone since 2000
- Mom’s decline is agonizingly slow
- Her memory problems have gotten much worse of late
- She is a needy narcissist
My son’s health issues
- ASD (autism spectrum disorder)
- ADHD (attention deficit hyperactivity disorder)
- Severe anxiety issues
- Depression
- Speech and language disorder (mixed receptive and expressive language disorder)
- Special education needs coordination and planning
- ABA therapy in home with techs coming in and out
- In the running for being the world’s pickiest eater
- Coordination of doctors, educators, and therapists
- Puberty (he’s 13), but the maturity of about a 10 year old
- Behaviors that go along with his diagnoses and mitigating the issues that arise from said behaviors
- Constantly trying to work within the various systems to get him the supports he needs
ICU nurse hubby
- Husband who is an RN on the ICU of our local hospital during the pandemic
- Husband is a combat veteran with PTSD from his tour in Iraq in 2005
- Now dealing with a grizzly bear for a hubby anytime things get stressful for him, work life or life at home, due to all the PTSD and other undiagnosed mental health issues which he refuses to seek treatment for
My own health issues
- Bipolar I Disorder
- Major Depressive Episode
- Migraines
- Fibromyalgia
- Asthma due to Long Covid
- Other Long Covid symptoms
- Both knees are bone on bone and no replacement surgery safe to do at this point
- Bad back and sciatica
- Cardiac issues
- Water retention
- Morbid obesity
- Vag/Uterine prolapse
- Diverticulitis
- IBS
- Overactive bladder
- No bladder control

And the list goes on…

It is no wonder I am not crazier than I already am. My life is insane! I am under such immense pressure and stress, I feel completely spent and empty inside; I have no more to give. And, because of all my health issues, I have little reserves to begin with.

So, here I sit, typing this when I should be doing something else, like showering or brushing my teeth (routine daily hygiene has been nonexistent lately). I have no energy to get in the shower. Brushing my teeth feels like torture to me. I can barely hold my head up, let along do something that taxing. And, with the UroGyn’s resident’s appointment I have in a little over 2 hours, I have to save my energy for that.

I am so nauseous, I can’t eat anything. I am sipping on a Gatorade Zero with Protein drink, and I can barely choke those little sips down. Am I grateful to be alive right now? That’s a loaded question. Am I alive right now? Yes, but I am not doing what anyone would call truly “living.” I am merely existing. Is this how I want to continue? No, absolutely not. What can I do to get out of this deep, dark hole? I am not sure.

But, I’ll tell you one thing:

Down in this deep, dark hole, it is scary.

My Third Post (A Long Time Gone)

I am listening to my Chronic Pain playlist while waiting for R to get out of school. I have some edits I want to make to it, but I am just not sure when I will get around to doing it.

I am in such horrible pain today! I am not sure who in my life I can share these things with. I need a better pain support system. Chronic pain is something not everyone can understand. Or wants to understand.

Every step I take is excruciating. Every keyboard stroke hurts. Everytime I shift in my chair hurts. I just hurt!

I don’t need well-wisher’s advice on how to feel better. They don’t know that if it worked, I would have already done it. What I do need is tea and sympathy and reminders that if I keep up with my self-care routines, things will get better. That this, too, shall pass. That this is only a temporary circumstance.

I guess today I will just have to be my own support group. Breaking through the brain fog to write this to myself, and to you, dear reader, listening to supportive music from songwriters and musicians who understand what it is like and have created music from their pain, and just be gentle with myself as every fiber of my being screams out in agony today, reminding me that I have no choice but to take it easy and rest.

So, go and rest is what I now shall do.

My Second Post…

“Do I want to get a shower,” my husband asked me just now. I want to. Really, I do. It has been two days since my last shower, but I just don’t have the energy to deal with all it entails. All the pain that will happen while doing it. All the needle-like drops of water hitting my skin. Over and over. And over.

Two days is hardly the longest I have gone between showers. Try 5 to 7 days in between showers. Let alone washing my hair. That is even more painful. Putting my arms above my head for extended periods of time is torture. Absolute painful torture. But I do it when I can. When I have to. When my hair and body are so dirty and smelly I have no choice, if I want to live in the real world. Especially at work.

I have a relatively easy job, but I do work with the public. I no longer just work from home like I did for a while. That was its own torture. My bosses were crazy and they literally drove me to a nervous breakdown. That’s when they finally realized I was bipolar, not just unipolar depressed. So now I do my little part-time tech job as a public servant.

Part-time is about all I can handle at this point. I’d like to do more hours, but the fibro and bipolar kind of prevent it. And I’d like to make more an hour, but I am afraid to ask for a raise, as I need to take so much time off of work, as it is. I can’t remember the last time I worked a full 20 hour week at work.

So now I devalue myself. I question whether or not I can do my job competently. I question my worthiness at work, all the while knowing that I truly am worth it. When I can be.

And I question whether or not I stink because I can’t remember the last time I got a shower and washed my hair.

Such is life with Fibromyalgia and Bipolar I Disorder.

My First Post…

An original name for my first post here, I know. But I can’t come up with anything better. It is one of those days.

We are at the Metro Detroit Legoland and I am in their little food court, typing this on my phone, rather than enjoying this experience with my almost 11 year old Autistic son. My hubby is taking R around to the different areas.

I truly wish I felt better today. I truly wish I felt better everyday, but I don’t. This is life with Fibromyalgia and Bipolar I Disorder.

In short, life is generally sucky! But I am strong. I will persevere. I won’t like it, but I’ll do it. It is expected of me. It is expected of us all. I live for the little moments. The small, bright moments in my life. This just isn’t one of them.

Though it should be.

It should be. We are celebrating the birthday of my one and only child that we fought so hard to have! And here I sit, in the corner, almost crying, writing my first post. Keeping it real. Trying to keep it real.