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:

EXILES ON PAIN STREET
(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.

Uh-oh.

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.

Friday, September 22, 2017

The Pains

There are different types of pain I'm experiencing.  I'm sure everyone has experience the tingling when your feet or hands "fall asleep".  It's NOT that. There is numbness in my hands that makes it difficult for me to draw.  I try to get some drawing in when I can, but it's becoming an exceptional day for me to draw.  My feet have a sensitivity that goes beyond numbness.  But those symptoms are not the pains.  Nor is the feeling of stepping on rocks when I walk.  That never seems to go away, but it's not like the pains.  I will break the pains down into the different categories of pain that I experience.

Pins and Needles 

Little pin pricks all over the feet and legs.  Sometimes these occur so much at one time that there is even some heat-feeling involved.  So, pin-pricks and burning of the feet; when this happens, both my roommate and I call it "being microwaved".

Ice Picks

These are point-specific and sharply abrupt.  A jab to the big toe or the ankles.  Sometimes as far up my legs to the knees.  They take my breath away when they happen.

Knife Stabs

 I'll get a knife-stab feeling at the bottom of my feet.  It's like someone takes a butcher knife and stabs the bottom of my foot, usually in the arch area.  It is abrupt too.  Enduring the pain, that is all you think about until it's over.

It's getting late and I'm beginning to lose focus. Better publish this and get some rest.


Thursday, September 21, 2017

I should have started this when the pain started. I had no idea that it would continue for so long. It was April of 2016 that my feet began to hurt and not stop hurting.

At first, it was like I was walking on pebbles, I felt like I had rocks in my shoes or socks. I was having trouble sleeping and especially in the wee hours of the morning, seemingly always starting at 4 am, when it would feel like my feet were bursting into flames. I tried soaking them in Epsom salts. I had mixed results mostly just adding to my discomfort.

Being jobless and without health insurance (but does anyone in the U.S. have HEALTH insurance. It seems you pay for disease maintenance rather than any actual health benefits), I had to find alternatives to relieving my pain. I have a wonderful chiropractor that has helped me realize that this isn't a back/spine problem, and I'll get to that, but it's perhaps a virus or parasite. I have been to a traditional doctor who didn't listen to a thing I said and diagnosed me with diabetes, which again, is not the problem. It's just an easy answer for them. For those that think I should just find another doctor, see the opening statement in this paragraph.


I hope to describe the pains that occur. They are all different and don't seem to be triggered by anything I can figure and are not regular, except for the constant foot pain that makes it difficult to walk.