Saturday, April 21, 2018

My Older Baby Sister

She's down there somewhere. Rochester Cemetery, Shawnee County, Kansas. Just West of North Topeka.  She was born June 5, 1959 to Rubye and Wayne Sullivan.  She died weeks or even months prior to this.

You may not want to read further.  It's pretty disturbing, but it's part of my history.  I'm not sure why I'm remembering things like this now, after so long, but they are coming to the surface of my mind and I think the only way to ease them is to write about them.

They wouldn't name her.  I'm sure it was too painful.  We only talked about it once that I can remember.  It was the Summer of '69.  Now, I can understand it as 10 years after.  My parents were going to have a baby.  No, not really.  My mother was going to have to have a stillborn child.

The umbilical cord had wrapped around the baby's neck and she was strangled in the womb.  For whatever reason, they said that my mother had to carry it to term.  To have to give birth to a dead baby.  When she did give birth, they didn't allow her to see it.  It was dead and apparently hideously deformed because ... well, I don't know, but I assume decay.  I can't imagine what that was like for her. 

The birth and death dates are the same on the memorial.  But she actually died before she was born.  I keep thinking about that.  Apparently, there was some
incompatible nature to my parents' blood or genetics.  I was told that Mom had to take certain drugs for it to be possible for me to be in the world.  For her to safely have a child with my dad.  I wonder about this too frequently, but not really acknowledging the poor sister I might have had.

Maybe now that I've written this, I can sleep a little bit tonight.  Good night Infant Daughter Sullivan.

Tuesday, March 20, 2018

A Gloomy Day

Today was a rough day.  Waves of nausea and aches, maybe due to the rainy weather, I'm not sure, kept me from accomplishing anything.  And now, I'll probably be up most of the night but at least the nausea is gone.

I can't keep my hands and feet warm today either.  I have my heating pad, but there only so much you can avoid doing to keep them under a heating pad.   Definitely makes typing difficult.  Ha.

Lydia © 2018 Mike Sullivan
Any time I touch something cold, both hands are immediately cold.  When I stand on my feet, they become immediately cold.  I wear two pair of socks and my memory foam shoes.  I guess it's just my current process.  It's what I have to do.

I'm not totally sure where this blog-post is going.  My  mind isn't very focused.  Maybe I'll do some drawing.  I really need to make that a habit.

Here is s character design for one of my graphic novels.  Her name is Lydia, if I don't change it to a color-name.  She's the queen of a human-offshoot race.  Her husband, the king, will be named Indygo. 

Saturday, March 17, 2018

The Dream Today During My Nap

I had to lay down, as I do most days, for a nap.   The pain was bad.  Anyway, for the hour I was down, I did fall asleep and actually had a dream.

In it, I lived in a big, old, multi-story house.  Some big men broke into my house and threatened me.  In the dream, I knew who the men were, but I don't really know anyone like them.  They were big men, long hair, scruffy beards.  They thought that I knew something that they wanted.  Some information of some kind.  I'm not sure what, but something.

My cat, Buff, was there and was hiding.  I was glad he was hiding because I didn't know what these guys would do.  There were, at first, three of them.  Then, two, and finally just the one doing most of the talking.  He threatened to break my cell phone (I don't have a working cell phone) and I told him I didn't care if he did.  It wasn't important to me although in the dream my father had given it to me, so it had sentimental value and I didn't want him to break it.

I somehow lured him out of the house, onto the porch.  The big house had one of those big wrap-around porches with the railing and big steps to the front.  I looked over the railing to the side and my cat, Tomas, was there, playing in a box next to some flowers.  I was so happy to see him (Tomas died last year,  March, 2017). 

I didn't want the big, bad man to get him, so I jumped over the railing and got Tomas.  I had him in my arms and brushed the leaves off of his fur.  I held him to me and then woke up from the dream.

Buff was laying next to me.  I startled him awake and he came up to me.  I pet him and talked to him.  I was glad he was with me. 

But the dream still made me sad.  It's funny what dreams come to you.

The Return

It's been a while since I posted. Many things have happened and not many were what I consider good. I'm still in pain and it has, of course, increased. One of the reasons I stopped posting about my pain was in reaction to the reaction I was getting. 

My intention was merely to inform people of where I was and how I was feeling. Hoping to connect with others that might have similar symptoms and no relief. It seemed to upset more of the people that I care for. I haven't found a doctor. I don't know where to go to do that in our country. Medicine is a money-making capitalistic endeavor. I don't have money. I can't afford to waste what little I have searching for a doctor that will ... doctor. So I'm left to my own research. 

I think blogging about it is helpful for me. So, I've decided to try it out again, hoping that people will understand and not freak out.

Tuesday, October 31, 2017

Everything's Rough

The feeling in my hands is all wonky.  Everything I touch feels rough.  Fresh sheets on the bed, my soft, fluffy kitty, the smoothness of ... well, anything.  It all feels rough.  And there are degrees of roughness to it, but it starts out just plain rough.

That's not normal, but telling a medical doctor is like telling him about my favorite comic book character.   A blank look comes over his face and he's thinking of his vacation or last night's episode of The Good Doctor.I don't have access to opiates.  The people I know that have taken them for years for their pain are NOT addicted to them.  I don't care what they say on the news about this.  It frightens me that people have access to guns but are unable to get relief from pain (you'll just have to forgive me that I don't believe this has to be in the Constitution to be something everyone should have) without the stigma (and now persecution) of taking drugs to deal with the pain that medical doctors mostly just ignore.  They can't deal with pain.   Pain isn't quantifiable for them. 

I hear the tone of the newscasters that talk about the Opiate Addiction Epidemic
.  That tone and most of the words that come from those news spots place the burden and blame on the people that are in need.  I don't know anyone addicted to drugs.  I probably live a very sheltered life, knowing as many people as I do, not just in Kansas City, but across the Nation and a few around the world.  Let's see some of those people, huh?  How many are we talking about?  How many are we talking about compared to those with alcohol addiction?  At least, they can seek help anonymously.  We don't hear about them on the news unless one of them is driving while intoxicated and hits a child.  I don't want to lessen the tragedy of that, but let's do some real numbers and not just do the same fear tactics they use for politics

Well, my hands have come to a limit on typing this.  I hope to get some sleep tonight, which seems to elude me, but it's almost 5 am. 

Signing off for now.

Wednesday, October 04, 2017

It's been a rough couple of days with the pain yo yo.   Sleepless nights, increase in pain, maybe due to the  stormfront that moved in.  A friend of mine suggested to try to track what I do, eat, sleep, etc. to see if there's some kind of correlation.  I want to do that in my moments of lucidity.  I'm going to try. 

Now, I'm experiencing another kind of pain.  I called my dad today.  He and his wife have been moved to a care facility in Salina.  I know things are going not-well there.  It makes it bad for me because I can't visit them.  Driving across town is about all I can handle, let alone a two-and-a-half hour drive. 

So, I call.  And today was the day I've been dreading.  I have become used to calling and having the same conversation with my dad.  I just acted like it was the first time and responded like it was our first time of talking about this or that.  Today, I don't think my dad knew who he was talking to.  We were barely on the phone for two minutes when he said, "Thanks for calling, goodbye," and hung up.

I choked up.  It felt like I'd been dealt a physical blow.  Alzheimer's is a terrible thing.

My dad Wayne, cousin Neillie, cousin Judy, Twila Dad's wife Taken Sept 29, 2017

Wednesday, September 27, 2017

One of the people I follow on Facebook is Jeff Cocco.  He's been suffering from chronic pain for years.  Today (September 27, 2017), Jeff posted about his current situation in trying to deal with the pain.  I've seen reports in the news about the "opiod addiction problem" in this country.  And with the same wrongness they always pursue, the establishment is attacking the problem with full force wrongness and the people that will ultimately suffer for it are those that are in definite need. 

And you know how good they will feel about it.  Yes, the people that actually need medication will struggle to get medication in this country and more than likely turn to a black market alternative.  And those people will also be blamed for it.  Here's what Jeff had to say:

(words from Jeff Cocco):

I have a pretty serious chronic pain condition that emanates from multiple sources and am on some heavy duty meds - a long term one and a short acting one. Because of a snafu the other day with my asshole insurance company, I was unable to get my short acting ones for a couple of days (oxycodone) and I made a disturbing discovery: The pain in my feet has always been bad, but in the last year it had deteriorated to the point where I am essential crippled without my meds - as in barely able to walk.


Because this "crack down" on pain medication has merely seemed to result in a burgeoning black market - people who are abusing these drugs still seem to get all they need without a problem, thank you very much, and meanwhile, people like me who have a legit need are left twisting in the wind by the medical establishment. I literally know people who have turned to Heroin to deal with their pain issue because it is easier to get than having to go through all the roadblocks and obstacles doctors and insurance companies put in the way of REAL chronic pain suffers - how fucking sad is THAT? As if having to deal with severe pain on a daily basis isn't bad enough, chronic pain suffers also have to deal with the facts that the medical establishment basically knows SHIT about how to treat chronic pain, you are left on your own to figure out your own best course of action, you have to deal with hostile pharmacists and doctors who automatically assume you are a pill seeking junkie if opiods are the ONLY thing that work for you, and people, without knowing ANYTHING about your medical history of injuries (in my case, a childhood fall, 5 car accidents, 40 years of tending bar, and basically defective construction in my feet (pronated ankles, etc) that have all pretty much done their handiwork) assume that you MUST "have a problem" if you have to take strong meds on a daily basis.

There is a list of things I could tell you right now to debunk that theory, but let me just give you this ONE little tid-bit - people who take pain meds for ACTUAL PAIN DO NOT GET HIGH FROM THEM. That right kids - I'm really not floating on a morphine cloud all day. And I really doubt my shrink husband would be having it if I WAS abusing my meds - as it should be. In our over 5 years together he has never ONCE seen me loopy from my pain meds. Sometimes I would even take him with me to the doctors as my "reliable witness" LOL.
So, I live in constant fear that suddenly I will be cut off from pain medication due to "politics" and I'll be spending the last 20 years of my life in a wheelchair as severely disabled person - try living with THAT hanging over your head. (speaking of things getting worse, I just got off the phone with ANOTHER doctor to have them look at my knees - I have a NEW pain, a burning one, that is actually waking me up in the middle of the night. Le sigh. )

So - time for Jeff to get involved and maybe start an advocacy group for chronic pain sufferers - as well as a Class Action Lawsuit or two - since that is the ONLY thing people seem to understand and the ONLY time they actually listen - when you are threatening to take away their money. Of course I am cognizant that there is a huge problem in this country with people abusing these drugs, but making people like me suffer because of it is hardly the way to go about fixing that. This bullshit has gone on long enough ...

Saturday, September 23, 2017

Friday, September 22, 2017

Yesterday was a really good day.  I still had pain, mind you, but it was not as severe as what my "normal" is, my normal for the past year or so.  I had a chiropractor appointment and got some acupuncture and felt pretty good.  I wanted to do so much but figured I should take it easy and I did.  I came home and made a call to my sister, Vonnie, who lives in MidWest City, OK, as it was her birthday.  It was a good talk.

My roommate, Kerry, wasn't having as good of a day.  He has similar problems and has had them for about a year longer than me.  After dinner, we sat down to watch a movie and at around 10:15pm or so, we started in with the "microwave" pain of pins, needles, and what felt like a sledge hammer to the shins.  We soon went to our respective rooms.  I went to bed and I believe Kerry did the same.

I slept a fitful sleep.  Getting up ever hour or two.  Eventually, I did get up for the day around 11am and had breakfast.  I think I had gotten up around 6:30am and watched some UFO stuff or something.  Wasn't really focused, just trying to manage the pain with some turmeric, which can help a little and not resort to an NSAID. Oh, and Buff, my cat, was in an extremely playful mood.  I played "red laser dot" with him and also, he scooted around on the bed chasing...well, nothing I could see.  I think he was just being "crazy".  It reminded me a lot of Tomas, my cat that died earlier this year.  It was surprising that FaceBook prompted me with pictures from a year ago of Tomas.  I still miss him. 

In that twelve hour or so period, I do think I slept 8 hours.  Not like some nights that I sleep for an hour and then I'm up until 5am or 6am before I can sleep again.  I have been trying to draw or color in those wee hours to make them at least a little productive.  I've also started writing about the houses I lived in as a child.  Somehow, this all helps get past the pains.

Now, you might be thinking that as both me and my roommate have the "same thing", maybe there are environmental factors.  It would have to be something beyond what we've already come up with and dismissed.  And we've talked about it a lot.  The only thing that seems to be similar is both of us got this nerve pain after a fall.  In fact, Kerry fell twice.  And then the nerve pain started.