Me the night before my second spine surgery.

Shit Happens…

So I have had two spine surgeries within three months and I have been bed ridden six months out of this year I think.  I had been growing my hair out and I was even able to install faux locs, which looked so good. But the stress and the incredible, agonizing pain I was in made my Fibro flare up, which flared up the subsequent tactile allodynia, and made having hair hurt again. I couldn’t be in that much pain that I couldn’t control and then have the head pain which I could control. So I shaved my head again. So I’m back to being bald and lovely.

The Black Bibliophile Podcast Logo.

The Black Bibliophile Podcast Logo.

The cabin fever is intense at times. I haven’t been able to sit up for more than 3 minutes for six months. I lack the money to purchase a proper chair. I have been reading and trying to keep up with The Black Bibliophile Podcast. Which can be daunting at times because of all the formatting and research. My last two episodes have been me just talking about books and throwing my segments to the wind. I think this next episode I’ll try to get back to formatting as usual. I wanted to get back to writing also. I haven’t written a creative story in so long.

I have just been writing articles and think pieces. Which is fun but I want to get back to the science fiction stories I was so good at writing. Or at least thought I was good at. I finally finished my first zine it’s called The Cosmic Egg. It’s got all the poetry, short stories, and personal essays I’ve written in the past five years all in one 32 page booklet. I wanted to put it all together so I can move on from those stories and start new ones. It marks the end of one life and me starting another.

The Cosmic Egg Zine.

The Cosmic Egg Zine.

Financially we have hit a wall. The store is struggling because of the construction next door. This new building not only blocks the view of our apartment but it completely obscures the view of our shop from the street. So we have less foot traffic in the store. We wanted to move the location of the store but all our efforts were thwarted. We are young and so is our business. Many retail store front owners do not want to lease us their space.

So we might have to close for a month or so to find a new location for the store and to move into a new place ourselves.  It’s a lot.  All I can do is lay here and try to heal. I’m three weeks out of surgery. I can walk to the bathroom, walk up one flight of stairs (Slowly) and I can brush my teeth.  So it might be awhile until I can actually manage to help my business and household.

The world doesn’t stop. I can’t even attempt to describe my feelings on 45 and the chaos he is inciting. I’m just tired.

So look out for more zines and short stories. I’m going to try and keep the blog posts coming and keep anyone who cares updated on my life.

I Probably Need To Want Something Else…

I’m in pain but I am afraid to text the one friend who gets it cause I always text her about it. The emotional labor I constantly ask for has been building as my pain gets worst. So I don’t text her.

I want to ask my partner to make me something to eat cause it hurts to move but I know he has to watch the store, and he works full time. I don’t want to burden him more with my illness.

I want to post on twitter that this is the worst pain I’ve ever been in and that I don’t think I can take it. But I don’t want to be that girl that constantly whines on the internet about her chronic illness.

It’s not a good look.

I spend 21 hours a day alone in my room. I don’t see anyone, or talk to anyone. It could go like this for weeks, and sometimes it does.

The only human interaction I get is right before my partner and I go to bed.  We talk a little and then he has to sleep cause he has work in the morning.

I spend most of my day on my phone looking for a distraction from the pain. Or reading a book if the screen is too bright that day.

No one told me being sick was so lonely.  No one brought up that I would have to watch other people live their lives from a cell phone screen.

They never talk about it.

I feel like as the years go by and the more disabled and cut off from the world I become I just start to feel helpless.

I haven’t had sex in over a month. My partner is too tired. He’s gotten off in that time tho. even if I am in pain I still try to keep him “satisfied”. But I have to go on wanting. The only time I’m not in pain or aware of the shittiness that is my body is when I am having sex. Something to do with chemicals and adrenaline and science. For how ever long it lasts I get relief, and to feel like I am wanted.

Why is it ok for me to go on wanting?

I wish he could help me cope with my illness. I want there to be more hours in a day so we could spend time together.

I guess I want a lot of things. I want the pain to stop, I want my short term memory/memory to come back, I want to be able to walk without pain, I want to run my business, I want to not be jealous of all the people on my social media feeds. I want my partner to help take care of me more, and share the burden of my illness. I want to be more independent, I wish my surgery was successful.

I want to be able to say all these things and not feel like a burden.

There’s so much more I want to say, but to talk about my illness and symptoms would be to talk forever. There is literally no end to how each disease affects each individual part of my body.

I am an amalgamation of wants and wishes can’t be properly voiced.

Standing Up, For Yourself

I am standing in my store because it is physically too painful to sit. I have 5 herniated disks in my spine and one of my disks is pushing on a nerve that goes down from my butt to my right and left legs. The best way to describe the pain is, imagine the most painful charlie horse you’ve ever had, now imagine that no matter what you do it won’t stop cramping. This goes on for weeks and only gets worse. It’s a literal pain in the ass.

The pain is so bad that I can’t write any fiction. I can’t build worlds because the pain is all I can think about. I am falling behind in all of my duties because my leg constantly feels like it is being chainsawed off.  I go to doctors, they give me pills and stretches, and a recommendation for physical therapy.  I have had this back problem for 7 years. If pills and stretches were going to help I feel like they would have already.

My fiance and I went to see John Wick 2 this past weekend, I love Keanu Reeves, I’ve seen every movie he’s made and the John Wick series is by far my favorite. Sitting down for five minutes is absolute agony. That movie is around 2 hours long and the only way I could get through it was on a cocktail of muscle relaxers and pain killers.  I don’t want to be high all the time. I want to find a way to deal with the pain without medication. But at this point all of my doctors keep pushing medication at the problem and aren’t in any way concerned about fixing the issue. Like they say, there isn’t any money in a cure.

I’ve done injections, physical therapy, yoga, pilates, herbal remedies, acupuncture, and everything else under the sun and nothing helps. I was finally after years of being told I was too young reffered to a surgeon only to be pushed back into the physical therapy/ injections loop. It’s inferiating to be told what my body needs. I have no agency when I walk into the doctors office. I am told what I feel, how I feel it, and that I am basically being dramatic. Even though my X-Rays, MRI’s, and CT Scans say the problem is gradually getting worse and preventative measures are no longer working. But when I bring this up it is just me “not giving the system a chance”. The system has fucked me for my whole life. I have had to fight for every diagnosis, and every bit of mediocre care I have received.

But instead of you know, listening to me, the patient. I am stuck at 25 using mobility aids such as a cane and wheelchair, and in constant intense pain.  This last ER trip I was in the emergency room for 3 hours crying uncontrollably because of the pain. Only to be taken back and be told I should try losing weight ( I had lost 60 pounds prevoiously and immediately dislocated my spine, proving that the fat was possibly holding my back together. Like some kind of burrito fueled glue.) , I should try injections, this told me that the doctor didn’t read my chart but then began to treat me as if I was a drug addict. Like me wanting some kind of relief from the intense pain was a crime. I had to prove to him, in-between tearful gasps, that I  was an upstanding business owning citizen. To make him feel better about easing my pain. In what fucking world does a patient have to convince a “doctor” to do their damn job.

This is my life.

I now I have to schedule an appointment with my primary to be able to convince him to refer me to a neurosurgeon. I don’t understand why I have to negotiate with medical professionals to get help so I can live my life without being in an insane amount of pain. It’s absolutely ridiculous and completely exhausting.