Sunday’s Song

“Love is what we’re born with. Fear is what we learn.”

I realized over this past week that everybody I know seems to be letting someone/something get the best of them. It’s usually someone who has hurt them or something that is going to (i.e. addiction). Why do we do that? Why don’t we just let sleeping dogs lie? Why do we let us stop us from moving forward? People are desperate for connection at our most “connected” point in the human species. Perhaps, in our desperation, we don’t realize that we make self-fulfilling prophecies that let these people/things continually hurt us, alter us, our relationships, our decisions; the connections we desire and all of it needs to stop.

The one thing we can do to improve the value of our relationships: Vulnerability.

Let me ask: Is someone getting the best of you?

Is it time to let it go?

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

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. 

Sunday’s Song

This past week proved challenging and there were both sweet and sour unexpectedly and simultaneously.

Valentine’s Day was low-key due to my own limitations, but in the end will be more dear to my heart than most any other before.  I feared for my life and wanted to surrender to death at all once, due to uncontrolled pain which anguished me both physically and mentally. I hoped for my future relationships while sulking in the loss of others. There was both confusion and clarity. There were moments of bravely being vulnerable, bearing my soul and asking for help, while wanting to run away and hide from everything and everyone.

I dared greatly, but not yet all the way. Not because I can’t go there, but because there is no where to go, nor anyone to go with.