Hello Darkness, my old friend

Currently I am  experiencing a lot of visual disturbance (and periods of intermittent blindness) in my right eye, mostly. I cannot verbalize the anxiety that comes with these “visual events”. It’s pretty daunting to be facing blindness. What I;m proud of is this:

As a means of immunosuppression, my doctor placed me on steroids prior to starting chemo that has me unable to sleep for more than 2 hours at a time. As well as this and not being able to sit still, I’ve been pacing on a hardwood floor. Im experiencing something like painsomnia.

Instead of losing myself in worry, I’m watching Planet Earth on Netflix so that this eyeball can serve out an “I got to see that”/vision loss bucket list of sorts and I feel pretty damn proud of myself for being able to just sit here and be still in this.

shadowboxing the inner critic

What do you do with your life when you have relentless ambition, a beautiful mind and dope soul but literally nothing else to offer ?
It seems almost as if an oxymoron. Why would one need worry about anything else when in possession of such a triple threat and also, you would be surprise how little people see beyond physique and what you can bring to the financial table.
Im suffering from a chronic illness that has gotten to it’s worst point (as far as I have personally experienced thus far) recently. I’m losing my sight; and mind it seems. I’ve had to resign from any employment, most likely permanently. All while being a single Mom who is coming up short in every aspect of parenting because I often find myself completely depleted on energy. I’ve always prided myself on being a good Mom, now I try to console myself my saying I can’t be the worst, but it certainly isn’t from any shortage of effort.

I’m over extended in everyway.

I really am out of ideas and resources.
Im all ears…

Immunosuppressive Therapy: So it begins…

Day 3. 40 mg of prednisone. I am lit. I cannot stop talking and pacing and doing and moving and thinking and saying and all the things are happening. I have slept a total of 4 hours in 3 days and that was at the point of complete exhaustion and collapse. Im in constant pain because of the constant moving.

It’s not good.

Again, it’s Day 3. Chemo still awaits. (insert heavy sigh)

 I need sleep.

 

Sunday’s Song

“Call it a clan, call it a network, call it a tribe, call it family. Whatever you call it, whoever you are, you need one.” ~ Jane Howard

I spent last week inpatient. After changes to medications and a respite of sorts, I came home Monday. Around 5pm, my neurologist sent me a message via their medical messaging system to tell me that we were out of options and would need to seek outside opinions from Case Western University Hospital and Cleveland Clinic; and also, we’ve already done this. This means we have finally arrived at immunosuppressive therapy to turn off my immune system and turn it back on; you know, like a computer. I start with steroids today and will start chemotherapy in the coming weeks which will last 4-6 weeks and then again at 6 months. (AND possibly also brain surgery to place a shunt.) Finally, I resigned from work on Friday.

I have so many things running through my mind. They’re screaming as they lap one another. On the surface, I feel … peace? (I think that’s what they call it. *shrugs*)

THOUGHTS:

  • it’s going to be weird to have so much time on my hands but really not being able to do much ‘going out’ going forward.
  • It is strange to refer to someone as your “boyfriend” at the age of 39. He is neither a boy, nor JUST as friend. I like main man. EX: Maui is my main man.
  • The new meds are making me hella sleepy, but the steroids will make me on edge. New meds proving to be very necessary: “God’s will be done.” Because *motions around to everything going on* FUCK. (Sometimes it’s the only word to capture the true fucked-upedness of the moment.)
  • My brain needs to be numbed down to avoid burning out, but that’s all the drugs do.

The rest of it is really hard work, mindfulness, that only I can, have and will improve upon doing for myself.

                    (((sigh)))

Also, I have never felt better mentally and/or more sure of myself. I don’t know what’s going on now, or what will happen in the future, but there’s something delicious about ambiguity and I know whatever it is I can handle it. I’ve got nearly 20 years worth of blogging here to prove it, no matter what the ‘shitty-committee‘ that meets in my head likes to say. There is batshit crazy POWER in being fearless. This is next level. The proof is in the pudding, folks. I have a 100% survival rate this far after all. *smiling broadly*

HOW ITS GONNA BE:

  • I’m not going to let fear drag me anywhere, nor reel me in. It may have a moment and I hope that is all.
  • Being inpatient taught me that I’m not alone and couldn’t be even if I tried.
  • People are hurting, ya;ll. People need connection with other people. Bottom line.
  • I may spend the rest of my life not being able to work for a paycheck, but I promise I am going to be doing hard work.
  • I will be spending the rest of my life making sure I take time to sit with the broken because that’s my character and, my biggest hope, leave a legacy of love for my children. There’s worth in that. As long as I know that to be true, nothing else matters.

Diva, while you may one day fear becoming just like your mother, just remember this, Im a strong, mutha, baby girl. 

Today was a good day.

Cold and blustery. Intimidating on the surface as I start immunosuppressive therapies tomorrow. I just needed a day to dust myself off, get back out in the world, see beauty and have fun. I was not disappointed.

Maui took me to Cleveland’s Botanical Garden for ORCHIDMANIA and a butterfly release. I was not disappointed:

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This was promptly followed by an evening at the casino hanging out with my secret identity where I was reintroduced to an old flame, spending money as entertainment!

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We even hit a Red Robin up on the way home for burgers, bottomless fries and bottomless root beer floats. YUMMM.

The point is, I’m so grateful for today. It may the last day I’m able to get out and walk amongst the living for a while due to the immunosuppression, but Maui was determined to show me a good time. We got a little crazy at the casino.

There was lots of smiling and laughter. My heart is full. That is all.

Sunday’s Song

This week while inpatient, I learned that Im still perfect even when Im fucked up because Im being myself. I was able to reach out and make deep connections despite intense personal suffering and I was told directly of it’s impact by a handful of people. You may think, ‘only a handful?’ and while you may be right, to meet people where they are and love them exactly as they are, unconditionally, I find is hard work that not all humans are capable. It seems to be my superpower.

Down the rabbit hole …

Had a complete meltdown in my doctors office this morning and in an instant, I had a plan to die and knew I’d never make it home if I left. Sitting in that room, sifting through the past month’s tests and prescriptions, hearing that staying the course is the only way through. I told her that I felt overwhelmed emotionally and was physically immobilized. I can’t be poked anymore, tested, gnaw at my nails awaiting test results while my vision sporadically leaves.

There’s just no words to describe how weary I’ve grown. Yes, I’m a strong woman, but this appears to be my tapping out for the time being.

Now, I sit in an emergency room a few floors down from my doctor’s office with a 1on1 nurse. I’m still in pain. My circumstances have only gotten worse by choosing this path to take care of myself.

Fuckin A.

I feel complete hopelessness. Everything feels nihilistic.