Entropy

~things fall apart ~ the center does not hold~

I can feel the edges crumbling, the particles of my balance slipping into the cracks at my feet.

Everything hurts, & I can’t afford anymore doctor bills.

My RA is flaring in places it hasn’t been before. Or maybe it’s not RA, but the beginnings of fibromyalgia, the same as my mother has, mingling it’s chaos with the rheumatoid I already know, and that has been diagnosed.

*sigh*

Who the fuck knows.

And, since I can’t afford more medical expenses, I can’t get anyone to believe me.

Fuck invisible illnesses.

The anxiety & depression are only worsening, as my chronic pain settles even further into my system, denying me rest, denying me decent sleep.

All of which, are causing migraines, as the stress of it all builds.

It’s spiraling, & I can’t ask for help.

I’ve tried explaining, tried telling family that things are sliding Sideways.

But, it’s just not a priority.

They don’t hear me.

They don’t understand, that the smaller pieces I’m telling them, are tests.

And no, fuck, it’s not fair to test my loved ones, but in the state my brain is right now, I can’t bring myself to let it all go.

Because, if they don’t hear the little pieces… The times I continually say “It’s really hard trying to do this on my own”…

If I keep getting blown off…

Why say any more?

It doesn’t make a difference.

There is no help out there.

I have to do it all.

And I’m alone.

I’m always alone.

In the end…

Entropy always wins.

The Problem With Invisibility

Chronic illnesses, Chronic pain, autoimmune disorders and diseases, they all change a person’s life forever, and not in a good way.

I’m not going to try to cover all of them, not even some of them. Because I don’t live with them all, I don’t know how they all affect someone’s body, or emotions. It wouldn’t be fair to try to “explain” someone else’s pain to them.

All I know, is what I’m going through.

I have Rheumatoid Arthritis. I also have Chronic Depression, Generalized Anxiety Disorder, & CPTSD (Childhood Post Traumatic Disorder).

You might not think that all of these qualify as Chronic illnesses, or Pain Disorders… And you’d be wrong.

RA is a chronic, degenerative, incurable disease. It’s most often one of the “hidden” diseases until it reaches one of it’s worst phases, because all of the pain is on a person’s insides. Joint pain isn’t obvious, until you can start seeing the gnarling of fingers, the oversize swelling of joints, the warping of stance.

And one of the things about chronic pain?

After a while of nonstop pain… Most people become somewhat used to it. We never have moments without some form of pain anymore, so can’t remember what that’s like.

And, as your body becomes used to the lower level constant aching… Your body resets its base level for pain.

Things that would cause a normal person to call out a 6 or 7 on a doctor’s pain scale, are now a 1 or 2 for us.

“It’s just always there, it’s normal”

Whether my face shows it or not… I’m always in pain, anymore.

Knees, ankles, wrists, fingers, lower back, hips…it’s like a sub-aural hum from elephants. Human ears don’t pitch for those, and my pain receptors don’t seem to pitch for the pain that’s constant, anymore.

My mental illnesses, Chronic Depression, Generalized Anxiety Disorder, & CPTSD, are also hidden diseases.

Many people still don’t think they’re actually real. They claim it’s a “weakness of spirit”, or laziness, or, as some religious fanatics call it “infestation of evil”.

When, in reality, my body doesn’t produce certain chemicals to properly balance my brain, so I have to supplement them from the outside with medications.

Just like people with diabetes have to take certain medications to properly balance sugar/insulin levels.

And yet, I don’t know of anyone saying Diabetes isn’t real…

And as far as my mental illnesses go, most of them go back to traumas that happened when I was young, and my brain stopped making the chemicals to balance out the emotional damage from overuse of the stress chemicals.

How long can a person survive on adrenaline from a flight/fight/fawn response?

Eventually, it runs out.

And, as the lovely topper one this stacked shit sandwich –

All of them have a side symptom of exhaustion.

As a person with these illnesses, I struggle a lot to do certain things. And some days are a harder struggle than others. Some days…are just a wash.

And yet, no one can see any of them, unless I choose to show them, to talk about them, to try to explain.

But, because you can’t see them, they’re not real, right?

Cover your eyes, make them invisible, and they cease to exist?

That’s a 1-yr old game of peek-a-boo.

And I’m no longer playing.

I’m not invisible, and I won’t go away.

Wiped

I fell asleep with my phone in my hand, Facebook open, last night. How do I know this? Because the 1st thing I saw this morning when I picked my phone from the chair today was the top of the FB screen.

I don’t even really remember opening fb, last night. I’d spent the evening mostly on tiktok (my new favorite social platform), & must have decided to flip over to see what the other side of the fence was doing before I…*blank stare, slow blink…oh, Good morning, sun.*

This – the random exhaustion, completely debilitating, has been something I’ve been dealing with for a while now.

I worried about it for quite a while, thinking there was, maybe, a new issue with my thyroid? Maybe a bad slide down in my depression? Maybe (help me out here, WebMD) it could be something really awful?

I visited my doctors. Had tests run. Numerous tests. Lots of money down the drain, and a lot of patronizing medical verbiage from some of the physicians. You know, shit I don’t put up with. One doctor, I refuse to go see, anymore.

Putz.

Well, funny enough, it was the internet that helped me figure it out, not one of my Drs., who basically all told me that it was nothing, “Just the price of getting older, dontcha know”.

On a tangent, (but applicable, just wait) did you know that I have RA?

Rheumatoid Arthritis.

Yeah, I’ve mentioned it, once or twice, because it mostly affects my hands, both wrists & knuckles. It makes it difficult to work on crafts I love, but, it’s not usually severe, unless I push it too hard, like with serious yardwork over and extended period.

It is starting to affect one of my ankles, which I broke a few years back, so… that’s nice.

And now, back to our regularly scheduled programming.

It was actually a TikTok (don’t ask which one, I can’t remember their name, & was in epiphany shock when I saw it) that clued me in.

The creator was talking about something she’d been trying to do, but her RA fatigue wouldn’t give her enough spoons to accomplish the job. (I’ll write about the “Spoon Theory” another time, or you can Google it)

So, I went back into research mode.

I have at least 5 of these symptoms. ✅ Lucky, Lucky me.

And no, RA is not the only cause for my fatigue. I have Generalized Anxiety Disorder, Chronic Depression, & PTSD working on me too, all of which cause cortisol levels (the stress hormone) to regularly flood my system, causing adrenaline to kick in with the “fight, flight, or fawn” impulse. And once the adrenaline bottoms out, exhaustion sets in.

And…AND… if that’s not enough fun for you, I developed vertigo this year.

My body is literally on a self-made chemical rollercoaster.

I hate rollercoasters.

Is it any wonder I stopped drinking?

Fuck, I feel drunk half the time as it is, anyway, who needs inebriation?

I’m still in research mode, trying to find what legit information I can, trying to plot my own course for treatment, since the doctors I currently have, don’t seem to want to discuss the notion that I might be right.

And no, I can’t go get 2nd opinions, or 3rd, or 4th, whatever I’m on right now, because they all work for the same medical hospital/clinic, & I can’t afford to travel & pay new medical bills somewhere else.

This shit’s expensive, y’all.

So, I’m looking towards more holistic, homeopathic, & self-generated help. As long as I can back the decisions with my own solid research, I might give it a try.

But, until I can start seeing some positive results…

I’m wiped.

Hives, but no Bees

Ok, I’m ready to talk about the health crap I’ve been going through for the last few months. It’s not pretty, but also not lethal. Except to my mental health.

It really started at the end of March, when I came down with bronchitis. I thought it might be covid, because many of the symptoms match, so I got tested. Obviously, it came back negative, so I got on antibiotics & recovered from that.

At this point, I started working from home, since we were planning that anyway at my office, & I wasn’t the only one from my department that was going to be doing work from home. We hadn’t planned on me starting so soon, but it worked out.

Then, I got the flu about a week later. Good thing I was working from home, as I was able to log in & work when I could, without having to travel to the office, feeling like crap, & possibly infecting coworkers.

Then, a couple of days later… I started to notice hives.

Just a few spots to start, they quickly seemed to spread, until they covered most of my body in extremely itchy, raised red welts.

And I do mean covered.

As in, at least 85℅ of my body was itching, welted, or felt like it was extremely sunburned.

These are pictures I took to show my doctor. They are just of my arms, and aren’t of the worst days.

I went through 2&1/2 bottles of calamine, and was double dosing myself with antihistamines. (I can’t take anything with diphenhydramine in it, like benadryl, as it makes my heart race, so I had to take what I can)

I also ended up with chemical burns from all the calamine. It dries your skin extremely well, so well, in fact, that if you use it for 2 months, you get dry-skin burns. And believe me, they hurt. It took copious amounts of lotion to relieve and reverse this. Don’t overdo calamine, folks. Trust me.

Think of it like pouring hydrogen peroxide into an open wound. After the bubbling stops, it turns white, right? Because it’s dessicated the tissue. Dried it to oblivion.

I also found a lotion that has menthol & camphor in it, which helps to kill the itch, & makes your skin feel extremely cold in the process, which helps with the burning feeling the inflammation causes. (It’s called Sarna)

My doc put me on prednisone, to help with that, as well as another issue, & it seemed to help.

During all of this, I tried to figure out if the hives were a reaction to a medication I’d started taking for my depression, or if it was a new allergy. Joy.

I stopped taking the antidepressant, on recommendation of my doc, and my emotions went haywire again.

I stopped eating the one food I thought might have caused the allergy. (I’m extremely picky in my eating, there aren’t a lot of things it could be, anymore)

And… The hives started to go away. It took a while, but it seemed to be working.

Then, last weekend, when I had my Schnicklefritz for the weekend, I ate something I hadn’t had for a while, & the hives flared again that night.

I thought this was my answer!

I’d found the culprit, and eliminating this would stop the hives, right?

I made an appointment with an allergist, anyway, just to make sure, but I was fairly positive I had my answer.

After seeing my doc this last week, I told her my theory, & she agreed with me, that it was probably a food allergy, had nothing to do with my med, & I could start taking it again, so I did.

That was 2 days ago.

Yesterday night, I noticed a couple of hives – on my face – and some itchy, raised patches on my thighs. I treated my legs with calamine, & my face with hydrocortisone cream.

This morning…

My legs.

I can’t show you pictures of the other places I found hives, because it was the back of my scalp, & along the back of my neck. Kind of difficult to get pictures of that, but believe me, I felt every welt.

And I’m not allowed to take any antihistamines. None.

Not until after my allergist appointment – next Wednesday.

So, I have literally zero idea what’s causing the hives.

No product changes, everything I use from soap to shampoo to laundry detergent, is stuff I’ve been using for years.

There are about 4 or 5 foods that I eat right now, and none of them have caused this since I cut the last one out. (It was barbeque, both chips & sauce, which is probably going to make me very sad, because I love barbeque. It’s one of my favorite condiments)

Most of the hives have settled down again tonight. Probably from the facts that, A) I applied calamine to every affected patch of skin I could reach, except my scalp; B) I used lidocaine spray on ALL of the welts. If it’s numb, I can’t feel the itch, so I won’t scratch, which just makes spread; & C) I haven’t eaten anything all day, but one of the few meals I know for a fact has nothing in it that will affect me.

But…

I’m frustrated.

And tired.

And depressed.

I’ve had so many problems with allergies over the years.

And now, to add hives into this?

What if the allergist can’t figure out what’s causing them?

I have enough trouble with getting people to believe me about my allergies.

I need a large change in my life.

I want to move.

And I want to get a job where I can work from my home.

I’m tired of other people pissing on my feelings, & endangering my life, because they want to eat something I’m sensitive to, something that could possibly kill me.

I’m tired of having to excuse their lapses in memory.

I’m tired of turning the other cheek when their actions impact my health.

I have an autoimmune disease, rheumatoid arthritis, which impacts so much more than just stiffness & pain in my joints. And I’m tired of people not believing me when I tell them that, too.

I need an out.

And I need it soon.

Or my mental health is going to continue to nosedive, antidepressants or not.

Masochist

I never thought I’d ever get pleasure out of pain, but…there I was.

Time and time again, chasing after men who either didn’t want to get caught, or men who claimed to love me, but constantly broke promises & tore my heart to shreds.

That would be me…always trying to hold onto that which harms.

Or trying to grasp that which simply dissipated through my fingers like smoke. Ghostly in its insubstantiality.

I must be a masochist.

I was constantly putting myself into a position of pain.

Well…no more.

I’m done.

I refuse to subject my emotional health, my heart, my self-esteem, into that position of self-flagellating hatred anymore.

I can’t do this, anymore.

So, I’m just done getting involved.

I am not going to participate in the game.

It hurts.

And, I really don’t like pain all that much.

Sure, I’d love to have someone come into my life who would be kind to me; someone who would be in a relationship with me. Something that had a hope for a future, at least.

But, survey says…that’s not happening.

So, I’m just not going to play the game at all.

It’s not worth it, anymore.

Not when I’m the one who has to pay the price of it in pain.

In the box you go…

Snake Bite!

It’s funny what the cessation of pain can do for your perspective.

And for your attitude.

It’s hard to realize just how much your attitude is affected by pain, until the pain stops.

Now, I’m not normally someone who goes around recommending products for anyone.

I might try new things for myself, say they “work for me” or don’t, or whatever, but I don’t try to tell anyone else whether they should use something or not.

But – I’m breaking that “rule” today.

I’ve also never come right out and publicly endorsed a product on my blog.

I’m doing that today, too.

Any of you who’ve been reading my blog for very long, know that I have rheumatoid arthritis in my hands.

I’ve been seeing a Rheumatologist for a few years now, and get steroid shots in my hands about every 6 months, just to keep the pain at bay. I also take daily anti-inflammatories to keep the swelling down. (My fingers get like little German sausages without them, and sometimes even with taking them – it’s yet another cause of discomfort, pain)

There is also a prescription gel that I have that’s supposed to help with pain. It does…a very little bit, but not to the extent I need anymore. It’s just not strong enough.

Well, I’ve been putting off going to see my Rheumatologist, because it’s kind of expensive, even with insurance, and I’ve been in a lot of pain. My thumbs, mostly.

Most people don’t realize just how much they rely on their thumbs for everything their hands do.

Pick up a stack of files?

Pressure on your thumb.

Lift a pitcher of juice out of the fridge?

TONS of pressure on your thumb.

Typing, which I do all day for my job, and typing on cell phones. Yes, different motions, but both rely on thumbs.

Getting dressed??? Try it with your thumb taped to the rest of your hand once, just to see what I’m talking about.

Luckily, the worst pain is in my left thumb, and I’m right handed, so at least I can “wipe” myself without pain. Geez.

Ok, so we’ve reviewed why I need pain relief.

Now, here’s the WHAT.

*I’m not getting paid to endorse this, wasn’t asked to endorse it, and the makers have no idea I’m writing this blog post. (I’m sure they have zero clue who I am, so, why would they know what I’m writing?)*

This is CobraZol.

And I’ll tell you right now, I’ve tried at least 4 other “arthritis pain relief” things that did- Zip. Nada. Zilch.

2 different types of daily supplements that were supposed to “boost your immune system, slow degeneration of joints & lessen pain, as well as 2 completely different type of creams. None of them worked – At. All. Binned- all of them.

But, the first time I rolled this stuff on my hands?

THE. FIRST. TIME.

Within 5-10 minutes, I had fucking relief from the pain.

The shoulders-falling, breath-blowing, muscles un-knotting, instant-smile kind of relief.

I found it on Amazon, & decided to give it a shot, after the last stuff I’d tried failed to live up to its hype. (I tried a hemp-derived cbd cream, no joy, & a strong smell, it went in the bin).

The CobraZol wasn’t expensive, just a little under $20 for a 2oz. roll-on bottle, so I figured, if it didn’t work, it wasn’t a big loss, right?

Well, I’ve been using this now since Wednesday night, so – approximately 3&1/2 days, & haven’t had to use my gel once, which is normally used 4 times a day. My hands have felt amazing, just some lingering muscle soreness (which could honestly be the beginnings of carpal tunnel, too, as I’ve been noticing some tingling & numbness in my fingers for about a week or so).

Ok, so, for those who noticed the name of the product. YES, it does mention COBRA.

The list of ingredients are on Amazon, as well as on the bottles, but, here are the main active ones:

Arnica

Capsicum

Rattlesnake venom

Bushmaster venom

Indian Cobra venom

Yes. 3 different types of venom. You read that correctly.

No, I don’t want to hear negative comments.

You see, I’ve done some research on this (I am a Google research nerd, don’t doubt).

I know the benefits of arnica and capsicum, so didn’t have to research those. (Witch, remember? I’ve read up on herbs, tinctures, & homeopathy)

Snake venom being used and useful for pain relief, however, I wasn’t familiar with, so I fucking looked it up. I don’t just buy things because some yahoo on the internet says so.

(Sorry, my mother had some things to say about this, or rather, we had a passive aggressive non-discussion about this, so I’m still a little tender around the mouth)

If you go look, and no, I’m not putting links in here, go look it up yourself if you want to read about the benefits of cobra venom in pain relief, you’ll find that there are many studies being done into how cobra venom, and even black mamba venom, have a better analgesic value than morphine, with fewer side effects.

A BETTER ANALGESIC VALUE THAN MORPHINE WITH FEWER SIDE EFFECTS.

Big pharma’s going to haaaaate that.

But, anywho.

Even if I couldn’t convince my mom that this was worth trying, I did convince many of the women in my office. I even got one of the others to try it, & she was convinced after about 20 minutes, when the pain she’d been having in her back for about a week was seriously reduced, & she had a better range if motion again.

She got on her Amazon account right away & ordered some for herself.

If that’s not a convincing endorsement, then I don’t know what is.

All I know right now, is that CobraZol works for me. The pain is so much less, which makes me feel better, & brings my mood up.

And lately? Anything that can bring my mood up is pretty much gold.

If that means snake venom?

Then…bite me.

I’m A 3-d Printworthy Genius.

I swear, someone needs to patent the shit that comes out of my brain.

And by someone, I mean me, of course.

Because then I’d be a gazillionaire.

I went to see my rheumatologist today about my hands.

I’ve had osteoarthritis for a couple of years, now, and have seen a couple of specialists. Last year, I got shots in not only my thumbs, but also in a couple of fingers. (The ones you don’t want to randomly show off to people, because they might get offended if you don’t explain, first, why you’re flipping them off)

Needless to say, the shots don’t last forever; osteoarthritis is a degenerative disease that causes the cartilage between the bones to decay, allowing the bones to rub on each other. Causing pain, sometimes lots and lots of pain, and some swelling. Although, with my osteo, the swelling isn’t so bad, the aching & pain is.

Most days, my hands feel as though they’re just meat bags full of busted glass.

And over the last couple of months, I’ve developed a problem with my grip, especially in the mornings.

Osteo sucks. It really, really does.

ANYWHO!!

ON TO THE BRILLIANCE!

I went to the Dr., and he gave me a shot in each thumb again. ….and it hurts. As the afternoon wore on, it hurt worse, aching all the way up to my elbow by the time I got home, driving me to tears.

BUT, I came up with a BRILLIANT, SCIENTIFIC answer to the problem!

Ok, so my first idea…if they can make fake boobs – just make them smaller, & put them in where the cartilage is supposed to go…isn’t so brilliant. I can just imagine – the implants get put in, and a short while later – – POP! yeah… Not going to work.

BUT! My piece de resistance…

3-d PRINTING!!

Everything is being 3-d printed these days, so why not cartilage replacements?!?

Look!

They can 3-d print a whole hand! All I need is the little cartilage bits between the joints! C’mon! Waaay less work for the printer, right?!?

They can make prosthetics with a 3-d printer, but not cartilage??? What’s wrong with this picture??

Nanoparticles!

They can 3-d print Nano-fucking-particles! And yet they’re not curing arthritis?!?

I’ve cured arthritis, here, folks.

Where’s my damn Nobel Peace Prize??

The Little Match Girl

I had a stocking hung up on the wall, waiting for his arrival, hanging empty in anticipation of being added to – waiting to be filled with joy and the presents of the season.

My daughter took it down yesterday, carefully rearranging the hooks on the wall to look as though there was nothing missing, no void, waiting for its fulfillment.

She didn’t want me to have to do it.

Again.

Goddess, I love that girl.

I had thought about removing that stocking…I was trying to avoid it, actually, and hadn’t quite decided what I was going to do. Leave it, and have to explain to everyone why it hangs empty? Or take it down, and get the “looks”? 

Either way, I know my parents will be full of questions, ones I don’t really want to answer just yet, and some I don’t know the answer to just yet.

I’m not sure what I’m going to do yet, and I really don’t feel like talking about it, out loud, not right now. It hurts, and like an animal with a wound, I’d like to go off into a hidden place, by myself, and bleed quietly, thank you.

What makes it more bitter to swallow is the holidays… lonely enough as is, now?

I’m nothing more than the Little Match Girl…sitting out in the cold, lighting matches (what a metaphor for a dating site, Hunh?),  trying to stay warm for a little while, & seeing hope in the flames. Hope that never blooms into reality and warmth. Each and every time I strike a match, I end up getting burned, but can’t stop from lighting the next as the previous one gutters out. Soon, my heart will give out, tired from the exertion, it will lay down to rest, and freeze, not to get back up again.

Goodnight, dear friends, for a little while.

Until the holiday is over, at least, I don’t think I can be here.

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…..