Today’s musing

I woke up early today. Couldn’t fall back asleep so I started reading my e book. I love it when I wake up early in the morning before everyone in the house. I hear the mourning dove’s syncopated intermittent cries and the car engines in the distance. For some reason it brings me comfort about starting the day.

2018 jobs

I’ve been chronically ill since 2018. If I had taken the time to properly understand what was ahead for me, I would’ve stored up everything I would need. When I say that, I would’ve immediately divested from church culture. Even though some of those places advertise rest, they don’t know how to facilitate it. And the time I invested I both deeply regret and cannot get that time back. I would have earned certifications for IT. I have done all these things, I am just doing them now when my brain is challenged physiologically and mentally. The work I am doing now is not sustainable at my current health status. Damn sure not getting paid enough for the pressure my bosses place on me to meet QA metrics. And fortunately or unfortunately, I’m not feeding into the frantic rush of being a customer service representative. My body won’t allow me to even pretend to care. And this is working from home. So I know I won’t make it in a regular work environment. Plus, I’m still working through PTSD from my past employments when I was still buying in on the frenetic expectations from employers. I get triggered by “encouragement” (maybe motivation is a better word) from supervisors who micromanage. I’m not a problem worker. I don’t get written up (no lie) but they go right into firing me (actually happened).

The craziest thing is I worked hard to get to the point I am now and none of the income went into it. So maybe I should do nothing since my income capabilities have diminished greatly. Which goes against the culture I’ve been raised in.

IYKYK

This week is crazy. It’s like I woke up one morning and found out I’m the only capable person in my house. Since I got my first infusion, I expected life to get easier for my to do list. I was great until yesterday when my body and brain refused to do the bare minimum which was eat. I slept all day hoping that would be enough for the weekend.

I got tired around noon. I really hope I get my energy and abilities back. Having these diagnoses of lupus and multiple sclerosis are not enough to get on disability. I work on phones doing customer service and after two hours my brain is mush and tired. My anxiety is through the roof because I can’t take a break between calls. I need to hurry up pay back this school and get my degree. Or make more money from my music.

Speaking of go support my artistry. It’s available on all platforms for streaming and purchase.

This Should Be a Podcast Episode

I got prednisone infusions today. My pupils dilated so much right now I feel like a vampire. The sun is going down I’m pretty sure I can see in the dark.

🦉 The letters on the screen have this ultraviolet outline around them. In dark mode. I swear if I could type as fast as I’m thinking this would be more entertaining to you. This is why I’m setting a reminder to do it. Plus the incontinence episodes are…priceless. The things you do in desperation to not have an accident on yourself!! It won’t be graphic, promise lol just a count of how many times I’ve peed in weird places.

My sense of humor is barely intact held together by anxiety at this point. I guess it works for now.

Self awareness

A year ago I was having trouble with my mental health. It was ROUGH. I spent days in bed dissociating watching random tv shows and movies falling asleep and then waking up expecting time to have passed and it hadn’t. I went on a trip to Hawaii in December and my heart kept palpitating for no discernible reason. I kept worrying that I would die or get sick in Hawaii.

Fast forward to now, I’m in school and I don’t have time to dissociate in bed. Blessedly my med team willingly gives out excuse notes. I sincerely am grateful but I am over this idiopathic treatment of my symptoms. It feels like a game of darts with a blindfold on and you keep hoping for the “Bullseye!” announcement. If the way my brain is working is any indication that something is wrong and I hope it shows up physically on my scans. I’m tired.

Struggling with suicidal ideations is tough. Each time I find my way out of the cloud, it catches up to me. Whatever joy or clarity I had is quickly overtaken by it. I keep waiting it out. I believe that I am also experiencing FOMO in a way I’ve never noticed. I struggle for my voice to be heard. Then I fall into the idea that my voice doesn’t matter and there’s no one around me who wants to understand or doesn’t care. There is this sense of being trapped in my body and I cannot stop it. Practicing mindfulness and slowly becoming self aware of my place in my body and mind helps release some of the anxiety.

I’m also in a lot of transitions at the moment. And understanding that helps a little. Realizing certain friendships are not what I want anymore. Understanding that it’s okay to relax and breathe even when stuff needs to get done. Enjoying the feeling of speaking without holding back or worrying if it will start a fight or hurt someone’s feelings. I feel so unbalanced inside.

Looking forward to a break from school in two weeks. If I get a clear moment in my mental state maybe. Maybe not. Definitely finishing The Tao of Pooh and relaxing. I feel slightly better now that I wrote it out. Doesn’t seem so crowded in my head now.

Delay of care…

Because of systemic failures by our multinational corporation aka United States…

Because of nihilistic thinking due to COVID…

Because all professional caregivers are burnt out and finally chose themselves…(this is a good thing)

Because of narcissistic leaders downplaying the severity of COVID…

Because half or almost all of the workforce died or suffered from COVID…

Because THEY NOT PAYING PEOPLE ENOUGH TO COME BACK!

I have yet to receive an official diagnosis for multiple sclerosis. It’s almost been six months since the brain scans. I finally got in to a doctor who is covered by my insurance. I just need a diagnosis so I can receive treatment. Can my body get treatment? I’m gracious to everyone discovering professional autonomy. But can I not suffer behind these facilities cheaptastic tastes?

Good Grief

So I can finally say that my dad was diagnosed with a disease. It’s hard, because I am a huge fan of holistic medicine, but my parents are in the weeds and don’t want my help. They’re going by what the doctor says even though my major is in Nursing. We got news this morning that it’s not aggressive and based upon a study by Temple University, observation and evaluating every six months. As a nursing student, I am respectful of his care team’s decision and the direction his health is taking. As a daughter, I have to play my role and I fucking hate it. If I can do something to improve or help out, I can’t. There’s this relationship with my mom and she is his caretaker. She’s not doing a great job — okay she’s doing a shit job and I wish I could cut her out as the middle man. My maternal family history is a Tyler Perry movie. And instead of being in a negative loop with them, I cognitively made a decision to get off the ride. For my own health and safety, I am keeping my distance.

When I got the news, we were going out of town. So in order to not breakdown into tears and give my kids emotional distress, I had to go into dissociation mode. It’s weird because in this space I can think through the facts and imagine/envision the future of not having my dad. It’s strange because my dad physically abused me as a child. And my mom was absent from age 5 on. She was the breadwinner. I respect her for that. As is typical with a breadwinner from the Boomer generation, financial support was enough. All that emotional, mental business isn’t important enough to change the work ethic. The house and bills need to get paid. And the emotional toll of my childhood, has injured me into adulthood. My workplace experiences have been rife with abuses that I didn’t realize was abuse. I’m not a victim anymore, it’s just really hard to assert myself confidently. I still fear the look of disappointment in all environments (home, work, social, relational). I’m taking accountability without humiliating myself now. But this news…is tough.

I’m still grieving for my childhood and the experiences I was intimidated out of by my parents and teachers and friends. So now my father’s health and impending death has joined the party. I’m even mourning my mom’s lack of knowing herself outside of work and imaginary busyness. She’s so artistic. I got my creative energy from her.

I’m sad. It’s going to be weird when the thing that tethered me to this earth is no longer here.

I Am Not Smarter Than a 5th Grader

Today we have been doing math nonstop. My kid is doing algebraic equations in 5th fucking grade. PEMDAS can kiss my ass. No one has yelled which is amazing. I grew up hating math because of homework time. Homework would go smoothly until math because I needed help. I have actively blocked that trauma and don’t want to pass it on. There have been tears and breaks. Tons and tons of breaks. I may have poured some Tito’s in my strawberry lemonade. She was so afraid to make mistakes or misunderstand something. I finally had to tell her let it go. It’s okay to make mistakes. In gymnastics, you can’t be afraid to fall, so I’m taking that same approach with her in math. Making her write out the problems so she can see where she went wrong, is key. She got it once she wrote it down. Math is great when you get it. Hopefully I can help my kids overcome the anxiety that comes with math.

This was an easy problem.

Healthy Intentions

So…brain fog sucks. Lol but that’s not why I’m writing. Originally I wanted to write a wishlist of winter must haves for people with autoimmune diseases. Then chaos erupted. You know that Yiddish saying, “Man plans and God laughs”? Face palm. So instead I’m going to write about my accidental intention to seek alternative healing.

I’m currently in therapy. The shit is amazing. I realized that things like sound baths, meditation, reiki healing, and saging (sage) are helpful too. I’m a recent escapee from American Christianity. Being told to suffer in silence for years and turning the other cheek did a number on me. Now I’m more like “try Jesus; not me” (shoutout to Tobe Nwigwe). When I lost my community, I was telling myself it’s okay, but I mourned for about six months (maybe longer). It was tough. I was mad at my family because they were okay with not going back. They just wanted to move forward and find something new. Then I snapped during Covid. I felt like I had lost so much and I resented my spouse because it seemed that he didn’t lose anything. If anything, he gained more. Enter therapy.

Now I’m saying this next part because out of all of my therapists/counselors I have only had one who was black. Calm down, take a breath, and keep reading. Anytime I have to describe an event in my therapy sessions, I have had to side bar my emotions to explain something cultural to them. Imagine that for a second. You’re upset sobbing and your therapist is like “What do you mean? Maybe you imagined it.” Or whatever else these licensed professionals could not understand because they never had the experience. Like a person supporting police culture, but their best friend is a trans gay black person. Pick any one of those attributes. I stopped going to therapy once because the therapist, who was a cis white male, suggested more therapy without a discount and we didn’t even begin to scratch the surface. I was his patient, and he was ambivalent about my recovery. Almost like he was afraid to get to know me as I was then. He couldn’t untangle the knots and mess my life was then. (Side note: I proofread and commas splices take too long for me.) Then I found this counseling service in my city. Income based copay and all that. My counselor there was a white woman. I was dubious but desperate so I gave it a go. She was my counselor maybe for a year and then she got pregnant and left the practice to raise her kid. I would eye roll but I get it. Kids take so much of your time. Then I went to this Asian male counselor…😕. He was so focused on recovery, he failed to help me acknowledge my pain. And the source of it. I don’t think he tried to get to know me at all. Every response from him was formulated before I could finish my statement. So yeah, I was done.

Then came Covid…and the issues that busyness kept back suddenly had my full attention. I lost it. Like everyone else. I shut down and refused to communicate any kind affection for my family. Locking myself in a dark room was my solution. After 14 years of me taking the initiative for therapy, my spouse found a therapist for us. Lol he was so proud of himself, I was unimpressed. My first therapy session was plagued with insecurity. It took about two months before I was relaxed with her. Some thoughts I was dealing with were how gorgeous my therapist is and that she might have bad intentions. That is slave mentality that I was struggling with. I compared and worried she would conspire to take my husband. Nevertheless I persisted, and kept using the tools she taught me to use when I’m anxious. Now I’m confident. I feel comfortable that she is willing to equip me and understand what it’s like as a black women in America. The best thing, I’m not alone in my struggles.

The alternative healing methods I have used so far is a sound bath and a float. Sound baths involves being in a comfortable position while the facilitator plays certain notes with sound bowls and instruments like a harp. There are certain notes that work for some and not for others. It requires relaxing and deep breathing. You might fall asleep. I dozed off. It was a nice nap I never knew I needed. The float was nice. The best way I can describe it is imagine floating in a pool or ocean of water while nature sounds play or not. You can be naked or have a swimsuit. You take a shower before you float to remove all the scents and oils from your skin. It lasted 30 minutes. I got curious during my float and tried a few things. I thought I could float face down and the burn!!!! IT BURNED SO DAMN BAD!! Reminded me of the Gulf of Mexico. Yeah. Don’t put your face in. Even with eyes closed. Just don’t bother doing that to yourself.

When I checked my emails this morning, Eventbrite sent me info for healing events around town. I appreciate that so much. My first healing event was through Eventbrite. Living in a city that values liquor over living is…tough. I have to be intentional when I’m out with friends. Reminding myself that I’m not going to perform this time. I sincerely hope I reach a level in my healing that everything I learned becomes embedded deep inside of me, and replaces the unhealthy stuff.

Selah

TransPARENTcy

So I have a guilty pleasure and that is Teen Mom OG. One of the moms Amber, was scared to come out bi. The biggest issue I had was that she said her kids were the reason for being in the closet. Let me preface this I’m not bashing or shaming anyone just sharing my experience as a mom for 15 years.

There were times in my parenting career where I hid a lot of the ugly issues that came up from my kids. And then there were times when I could be transparent and sure that they would get it. I told my spouse, I want to be the kind of parent that when my kids become parents, there won’t be any glamour associated with my parenting legacy. I’m not perfect. Never had my shit together. I was winging it 80% of the time. And I kept comparing myself to Ms. Suzy Homemaker instead of trying to figure out what works best for us.

I have been shielded from a lot of adult crap when I was young. They still call themselves protecting me from whatever they feel I can’t handle. My dad was physically abusive. Bad communications about bad moods and I was a kid unaware. Because of that, I tell my kids when I am having bad day. And they respect that. It is vice versa too.

Vulnerability is welcome in my family and household. We can better understand each other and develop coping and communication skills. I hope the hard work pans out for us.