Glass

Today is not a good day.

I woke up with a migraine- breath-stealing, nausea roiling, light/sound/smell/touch-sensitive; and all I wanted to do was take my meds & sleep it off. Stress has been high lately, & I’ve had more migraines in the last few months than is normal. I can’t afford some of the meds they want me to try, so I have to deal with them by smothering the pain in sleep. The doctor doesn’t understand… It doesn’t matter if a drug might help me, if I can’t afford it. It’s not even a guarantee of pain relief, just a chance. A maybe. 

I don’t make enough to throw utility money at a Maybe.

Then, I get a call from my regular doctor’s office. 

I have osteo arthritis in my hands, diagnosed by a rheumatologist. Most of the time, my hands, mainly my finger joints, feel as though they are full of broken glass, grating & grinding on itself, just under the skin. Occasionally, when there’s pressure put on those joints, the glass sets itself on fire, just for that extra-special kick.

He told me he couldn’t do anything else, as far as treating the pain long-term went, that I had to go to the Pain Clinic for that. I was to call my regular doc & have her send a referral to the Pain Clinic for me.

They sent a note back to her this morning saying they won’t see me.

Regular doc says I have to call rheumatology doc back, to see what my other options are. 

So, basically, the health care system here is telling me they want someone else to deal with it. No one is willing to actually sit down, LISTEN to me, & help figure out a solution. I don’t know if they don’t believe me about the pain, because no one is actually talking to, or listening to, me. They’re all looking at xrays & blood tests, thinking that tells the whole story.

I’m not a hypochondriac looking for attention. I’m someone who’s been through a lot of medical crap in her life, & because of that, has built up tolerances to certain pain meds. 

I don’t like taking pills. I don’t want to feel stupid & slow at work, & I don’t like the loss of control the drugs make me feel. I’m a control freak when it comes to my own body. I’m in charge, & I hate not feeling like I can say what happens with it.

In 2001, I finally had surgery that fixed a problem with one of my kidneys – that took 5 years & every test known to man & his dog to figure out. 5 years of flaring, excruciating pain, without a diagnosis to even give me a sense of reason. 

In just the past 3 years, I’ve had to deal with having my gall bladder removed due to gall stones & severe pain caused by inflammation.

I’ve had endometriosis, adenomyosis, & an ovarian cyst, which ended up with me having a hysterectomy. Following my surgery, my surgeon said he couldn’t figure out how I’d been walking upright, much less how I’d gotten into the hospital on my own two legs, due to the extensive pain the numerous occlusions of endo & adeno would have caused.

And now, the arthritis diagnosis.

I know pain.

I know how it steals your breath, messes with your senses, & turns your world into a small, very self-focused, & seemingly selfish, place.

I know that other people can’t feel my pain, they don’t understand that – even picking up files, taking a cap off a water bottle, using a pliers to take apart rivets & staples (part of my job, taking apart books held together by these things) – all these things cause my hands to flare, & tears to spring to my eyes because of it.

I gave birth to all 3 of my children naturally, without any drugs to aid the process, & ended up in shock due to blood loss during one of the deliveries.

I know pain. Don’t tell me I’m not perfectly aware of what my body is telling me.

I just want to be able to go to work & live my life without being either half-stoned on pain meds, or in constant, grinding pain.

Where do I turn now?

While I sit here with my hands full of glass, my head pounding, & my chest full of anxiety, depression & hopelessness.

What do you do when all the doctors, the “professionals” tell you that you’re not worth their time…..

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Taking Me Back

I’ve been spending a lot of time alone, lately. Not necessarily by choice, but because of circumstances beyond my control, the other people I usually associate with have all been preoccupied, absent, or geographically inconvenient.

Geographically inconvenient.  I like the phrase, hate the meaning.

Anyway, I’ve been working on filling my “me time” with things that need to get done, or that I enjoy but haven’t been able to do for a while. 

Take my house, for example.

I’ve been wanting to work on a few reno projects for a while, & after my dad put in my new front door, I decided to get started. I’m tired of waiting for anyone else to help me, or motivate me. No one’s going to jump forward & say “Hey, let’s do this!” 

So, I’ve begun painting my walls. Yeah, it’s going to be a slow process, which I’ll work on during the weekends, & when I have time, money & motivation to get it done. I want to see it finished before Onlyson graduates in the spring, so I’ve got some time.

It started like this…

After I ripped down some hideous ’70s paneling, I was left with a few dings in the plaster & a bunch of liquid nail crap that had to be sanded down.

Repairs took a few days, but I got to this…

An electric sander & a big bucket of plaster patch helped smooth out the dings & bumps.

And last weekend, I did this…

Aaahhh, so much better! A nice dove gray, I’m going to do almost the whole inside of my house in this color. Clean, crisp & fresh!  After 16 years of beige, it’s about time.

And then, there’s this…

After  a 25-yr. hiatus, I’m taking a horseback riding class! No, I don’t really need “teaching”, but I do need to remind my body what to do when on a large quadruped. I’m sore in places I’d forgotten I owned, & was reminded sharply just how out of shape I am.

This is the 2nd horse I rode that night. The first one dumped me off sideways when she decided to back into another horse because she was tired of hauling humans around. The other horse took exception to my horse’s butt in her face, & nipped her, causing my mount to shie sideways…which I wasn’t expecting. Landed on left hip & shoulder, & had the wind knocked out for a minute, but I got back up, dusted off & switched horses.

The best remedy when dumped off the horse is to immediately get back in the saddle. 

And the 2nd horse was a dream to ride. Responsive, quick to listen to what I wanted & eager to go, we actually cantered around the arena for a bit, which was what I’d been wanting to do all night. 

Yeah, after the night was over, I was reminded just how old I’ve let myself become. But that’s changing, now that I’ve been back in the saddle.

I’m determined that I’m not going to let my out-of-shape body defeat me. I’m going to get back to strength, so I can do the things I really love without suffering for days on end afterwards.

Fuck being old.

I’m taking ME back.

Checking In & Checking Out

A lot has happened in the last few days.
Here’s some of it.

**After the Great Phone Loss about a week and a half ago, I did get a replacement…
But I have since discovered that I’ve lost about 3/4 of the phone numbers & contacts that were in my old phone.

I guess that’ll learn me to write phone numbers down in an address book, & stop relying on having them in my phone.

** I spent most of Tuesday night in the local ER.  I’ve been in a lot of pain, due to my ovarian & kidney cysts, & have been having trouble getting a doctor to see me in a timely manner to discuss options.  So my regular doc suggested the ER, saying that there would be a ob/gyn on call, & I’d be seen.

Well, no.  The ob/gyn called in his recommendations, brushed me off, & told me to set up an appointment with his office… AFTER having a CT scan AND yet another ultrasound.

Only to tell me – that I have cysts.

Derp.

Cause I didn’t know that already.

And the cat turd on the sundae?

None of the ob/gyns can see me until MAY.

So I have to wait another month to even get in to see yet another doctor who’s going to tell me that my cysts are too small and unimportant to warrant surgery, and I can’t possibly be in this much pain.

“Beep”.

That’s the sound of me hitting rock bottom as I hang up on the doctor’s bitch secretary/nurse who told me that I should have called them months ago, since I’ve been suffering with this for 6 months or better.

As if I wasn’t in the middle of trying to get someone, anyone, to listen to me at that time.

(Ok, rant over…for now)

**I’m currently working on a wire tree for a friend of my parents who has bladder cancer.  I have finished a wire tree for a benefit at the end of April, that is being thrown for one of my uncles, who has esophageal cancer.  I’m hearing the “C” word waaay too often lately.

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Purple wire, jade stone chips, all twined & tied onto a piece of cactus wood, & finished with a purple ribbon.

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View of the “back side”.

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And here’s one I finished for my nephew.  He ordered this so that he can gift it to someone else, & I’m pretty proud if this one.  The blue stones look great with the silver wire.

** And that’s about it for news I’m willing to talk about.  The rest is just… still being processed…so I’m just not ready to share yet. But, I most likely will before long, seeing as how I usually put most everything here, eventually.

That’s the news, goodnight.

Vindicated

*with the tune from Dashboard Confessional running in my head, I write*

I’ve finally got a diagnosis from my doctor!

After all the testing (4 ultrasounds & a urologist – ordered nuclear Lasix renal scan) I have finally been vindicated in my pain.

The doctors kept telling me “No, there’s nothing wrong with your kidney, aside from it being enlarged from the past issues, it’s functioning within normal parameters.” (Translation inside my head being – “You’re imagining it, there’s nothing wrong with you.”)

But this latest round of ultrasounds proved them wrong.

I actually have a cyst apiece on my right kidney & on my right ovary.

Exactly where I kept telling everyone I was hurting.

And yet, the doctor still wanted to put off doing anything about them. Because? Well, according to the Dr., there’s not much they normally do about cysts… or so the nurse told me over the phone.  

Unless, of course, my pain gets worse or more frequent.

“The pain can’t get more frequent,” I told her. “It’s every day, all day long.”

And it has gotten worse. 4 days now, and counting, of pain that has caused me to take the stronger pain-meds I hate taking, because they make me sleepy & I feel stupid when I’m on them. Foggy, slow & non compos mentis. But, in order to get through the day, I do what I have to.

So, the nurse set up another appointment for next Tuesday for me to discuss options with the doctor.

I can’t continue being in this kind of pain. It’s worn me down to the point where it’s interfering with my life, my work, & my sanity.  Either I need a better pain-treatment plan, so I can get back to functioning normally, or we need to discuss surgical options for removal.

And I feel guilty saying that I can’t deal with the constant pain, because I have friends & family members who have to deal with chronic pain. Worse than my own, I know, & it makes me feel as though I should be stronger, I should be “toughing it out”.

But I can’t.
It’s too much, overwhelming.
And I’m still trying to manage all of this on my own, which is difficult. Not having a life-partner to help me cope…hurts. No rock to lean on, just me & my shaky anxiety & depression. I have friends who are good cheerleaders, but it’s not quite the same as a life-mate you can cry to at 3 AM, or you can vent with after a disappointment, or they’ll go with you to the doctor, & stand up for you when you don’t have the strength to do it yourself.

But, somewhere down deep, is that “give- no-shits, take-no-prisoners” woman who refuses to give up.

Permaneo.  To last, to stand, to never give up.

So I stand, alone in my house, maybe, and shaking on the inside…

But I’m standing.
And I was right. I am vindicated.

Specializing in Not Much

2016 seems to be my year.
Seriously.

It’s my year- – – for specialists.

A few months ago, I started having pain in my right side. Right where my kidney is. The kidney that I had to have surgery on in 2001, and thought I’d never have trouble with again.

And here I am, having troubles.

Yay.

So, I packed my happy ass off to my regular doctor, & told her all about it. She ordered the usual suspects – blood tests, urinalysis,  and an ultrasound.

Some results pointed at a possible issue, but it’s not kidney stones, so she didn’t know what it could be.

Whoopee. Time to swing out the big guns.
A urologist.

Monday, I went to see Herr Doktor – and wound up seeing Herr Doktor’s Nurse Practitioner instead.  We’ll call him “Precious”.

Why? Because I had to wait a freaking month just to get in to see a Nurse Practitioner, for one.

Two? Because Precious didn’t even do an exam! He talked to me, asked me where it hurts, what makes it better, what makes it worse, blah, blah ,blippity  blah.

He didn’t even have me get on the exam table so he could do the usual prod & test of the offending area.

He sat on his little rolling stool, legs crossed, and talked to me as though I am some kind of hysterical, hypochondriac female.

And when I told him my history – how I’d been through testing before my surgery – 5 FUCKING YEARS OF TESTING, with the exact same pain I’m experiencing now, same place, same batchannel, same bat time – you know what he told me?!?

No, you don’t,  because it was so far out from left field, I couldn’t believe it when he said it!

“I think it’s musculoskeletal “.

Dafuq?

AND, he can’t schedule any additional testing, he has to make a recommendation to the urologist.

Precious little got accomplished at this visit, but you can bet it’s going to cost me a precious penny or 12.

When did it become impossible to actually SEE a doctor?

When did it become a mine field of obstacles, nurses, automated phone systems & “nurse practitioners ” surrounding the Precious Doctors like a Wall of Doom?!?

All I want is someone to fucking listen to me, to believe me when I tell them that, after going through 5 years of pain, and every test known to man and his dog, then surgery… that MAYBE, JUST MAYBE I KNOW MY BODY PRETTY FUCKING WELL?!?

#\$&$\!\#*$(@*!&!&/! $@!*#/(/($£7=£&!&×!!!

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Oh yeah, and I had to go to an Endodontist today to have a root canal redone. The guy was pretty cool, actually, & is Donny & Marie Osmond’s nephew.

And all it took was $1000.00 out of my pocket after my insurance paid their part.

But he’s got a nice tenor voice, and a good sense of humor, so there’s that.

Whoopee.

Brain Rabies

I think I’ve been infected.

It started with a sniffle, which moved to post-nasal drip, and stealthily worked its way up into my sinuses and back into my ears.

There is now a soft, but constant ringing noise in my right ear.

I will go insane because of this.

Oh, wait.  Crazy can only get “er”.

I’ve had my voice fluctuating between normal and husky – all the way to non-existent.  People are going to think the multiple personalities are finally coming out to play. 

They’re not – I keep them locked up good and tight with the other Voices in my head.

I know that most people refer to this as “the common cold”, and write it off as a small inconvenience.

Whatever.

It’s brain rabies, I know it!

I’ve heard about brain rabies, a friend with her own troop of flying monkeys told me about it, and so I know it’s real and dangerous, and can only be cured by copius amounts of alcohol and bacon.

For realz.

One of the other symptoms of this heinous disease, so I’ve been told, is that you can’t focus on one thing for more than

Hey! Squirrels! I thought they were hibernating for the winter!

Awww… look how cute they are…

Uh, where was I?

Oh – that’s right.

Brain Rabies – seeee??

No, I didn’t plan that wild tangent all out and go googling for pictures of cute little squirrels to distract you – it was just like it happened here, honest.  It’s the rabies, man.

I’ve had a million and one things floating around in my brain lately, all stuff that I wanted to blog about, sorta…

But, have you ever had 2 colors of play-doh, and made something where you mixed it together?

Yeah, it doesn’t ever look right again, and you can’t pick those 2 colors apart ever.

Hey… doesn’t this look a little like a squirrel, if you cock your head to the side a little and squint?

 Jumping tracks again, sorry.

And I just had the crap scared out of me!

While googling  for a picture of “mixed up playdoh”, I ran across this:

This is a picture of another blogger’s cat.

Here’s Sally, mine: 

Twins?  Doppelgangers? 

I don’t know, but I do know that if there are 2 out there like my Patchwork Sally – in all her rabid-squirrel-coon-cat glory…

We’re all doomed.

Brain rabies is only the beginning.

Breakthrough

Talking to EldestDaughter last night, I was… well, the only word to describe my state of mind at the time – is “elated”.

Considering the surroundings she’s in right now, court-forced treatment (because of a technicality, and a vindictive state’s attorney who has awful professional ethics), my ED has been going through some serious navel-gazing.

And she’s come to some realizations that I’ve been hoping for YEARS that she’d find for herself.

And, as awful as it sounds, maybe this treatment that she was forced into… won’t be the worst thing in the world for her.  Maybe this is exactly what she needed, at exactly the right time.  I just wish the circumstances surrounding it hadn’t had to happen the way they did.

I know, this all sounds so murky and round-a-bout.

I’m trying to protect ED’s privacy here.

Needless to say, the circumstances that got ED where she is now, where she has to be for a little while yet, have fallen behind the strides and gains ED has gotten from the people she’s surrounded by now.

Last night, after talking to her, and finding out all that she’s come to see – with both eyes open – and the complete shock that enlightened epiphany most often brings – I wanted to cry with relief.

It’s been a long road, and I just hope that ED can see it all the way through.  It’ll be so much healthier for her in the long run, and she’ll be so much happier at the end of this journey – if she just sees it to its conclusion.

Opening your eyes to who you really are – seeing it reflected in other people, through their own eyes – is not always easy.  It’s often painful, confusing, and can cause anxiety, anger, and depression.  But it can also spur you into making changes for yourself.

Because I’ve often said that you can never change another person.  And no one can ever make you change yourself.

You have to choose, for yourself, to make changes because you want them.  It’s the only way that the changes work, it’s the only way that they’ll ever stick, and it’s the only way to do it without resentment and recrimination.  Because it’s all you.

ED has been surrounded by people who have it worse than her, people with problems that she can’t imagine having to shoulder through.  But, through listening to them talk, and through hearing about some of the things in their lives that closely mirror her own… she’s finding that she now understands so much more about herself, and why she does some of the stupid things that she does.  And she’s gaining the tools necessary to not only forgive herself, but to forgive others for their past mistakes – so she can let go of all the old resentments that have been eating away at her for all these years. 

Once she can reach that point?  Everyone who has a problem with her will have to deal with their issues on their own, she won’t feel guilty for them anymore, and she can simply choose to walk away from the negativity, instead of trying to fix everyone else and make everyone else feel better by giving up pieces of herself.

We talked about how one of the people in her group was talking about being a “people pleaser”, always trying to make everyone else happy, they emptied themselves out of emotion, energy, etc.  And when they had given everything they had, and there was nothing left, they had to “fill” that gap with something else, to take away the pain.

And ED realized that she’s been doing that with her Paternal Gene Donor for most of her life.  Trying to please him has repeatedly “emptied” her out.  Trying to “fix” others has repeatedly drained her dry of energy and will.  And once empty, she grew resentful.  Resentful that it was never enough, could never make those others happy.  So she would try to fill the void within herself with what she and I have taken to calling “dangerous fun”.  Those things that sound like so much fun, and friends will try to convince you are just “the best time ever”, but are dangerous to you, to others, and are almost always illegal.

And the one thing that ED realized that really made me want to cry?  That she is stronger than she ever thought.  She will make it through this, she will be better for it, and she will know that she can walk through fire – on her own if necessary – but that she also has a strong, loving, and unconditional support system waiting for her if she needs us.

I think my baby’s finally growing up, for real.

Thank you, Goddess, for letting me be a part of this, and for helping my little girl get through this time.