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*)
- 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.
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.
I’m so in love with my life right now.
All of it.
The good, the bad and the ugly. No matter what I’ve done or where I’ve been, it has got me here and despite the struggles, looking back through it all is quite a beautiful sight..
I’m not trying to catch feelings, I’m trying to build an empire.
That’s real talk.
I’m done with this low level, surface bullshit.
Yes, I’ve been broken, but it’s only taught me my capacity to love and I’ve grown and continue growing.
I’m learning to trust myself and others in ways that have been uncomfortable, but SO worth daring greatly.
My spinal tap showed increased cerebral spinal pressure, which we already knew from the vision loss. This accounts for the inter cranial hypertension diagnosis. The MRI was normal. My blood pressure is finally back to normal. This is attributed to a bad combination of dehydration from being sick all the time and lithium. Turns out lithium had been making me sick for quite some time. My doctor says we will need to keep monitoring symptoms and give it more time before we would move on to brain surgery and it shouldn’t surprise anyone that I don’t want my brain cut open.
This means giving it more time. My patience is wearing thin, but I am encouraged by other areas of my life coming together. Finances are just about straight. I’ve had more friends stop by in the past month than all of last year. Kids are back on track. My niece and nephews brighten everyday. There’s just something about raising kids that fulfills my soul. I have also had the sweet relief of knowing my kids would be watched out for and loved, genuinely, for the rest of their lives. I cannot tell you how heavily that has weighed on my heart and the enormous weight that has lifted from my shoulders. That, in and of itself, has been a major contribution to my stress relief. I am so incredibly grateful to my best friend, Tess, for being an unbelievable source of strength and comfort to me.
THIS is where I need to keep my focus.
Lord knows he checked out mentally long ago but I told him to leave physically. I can’t handle his ghost on my couch that stalks the kids and I’s emotional sanctuary.
I have to re-examine my life alone. I have to face the reality that he’s never coming back.
I don’t know where this road leads. There’s parts of me that think it leads right into the treacherous pits of hell. There’s another part of me that thinks maybe that’s where I’ve already been. I’m hoping the only way out is up now.
God knows, I’m crawling and clawing at my surroundings trying to regain my balance and find some foundation to build upon. I’m being careful to not hastily build on quicksand. I’m doing a lot of examination of my surroundings and those surrounding me. I’m taking stock of intentions vs. actions, reaching out more to those that are willing to take action with me. I have no use for lip service. Put up or shut up.There’s work to be done. Lend a hand or get the hell out of the way.
Mostly I’m just promising to love myself in a way that maybe I never have. I’m loving my body and soul. Taking time to care for each. And so, I need to recommit to being here more often and writing more. That’s part of taking care of me. I always show up for my kids and friends. I know that about myself. I love that about myself, however, I need to be more selfish. I need to make time and space for my thoughts and feelings because no one else will, unless I recognize and make them a priority. I’ve given myself permission to have bad moments and days, but not all at once. If I slip and stumble, I will do the next right thing for myself. I will not allow myself to get stuck in these moments and days though. I will continually reach deep down inside myself, or even outside myself if need be, to find the momentum to keep going.
I don’t know where this road leads, but I will keep going.
If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.
Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.
Now, the thing is … I’m not going to get better.
I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.
This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.
It’s just that I have finally arrived at a point in my life that is all about accommodating to realities, living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.
Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better. We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.
“Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA