New Normal

Now that I have to adjust to life with new drugs and the constant pain, I’ve been thinking a lot today about normal.

Normal for me has never been normal for others. But I need normal, at least some form of normal for me to put my thoughts down.

Unfortunately, this means books will have to wait until I find my new normal. I can’t write in my current situation, I can barely think most days. Between the constant pain, which is normally a 9 or a 10, which is why I am out of Vicodin and can’t refill until the 7th of November and the figuring out drug side effects, my concentration is shot.

It could be a while. I will do my best to keep everyone informed and find my new normal as fast as possible, but it could be a few months.

As such, I have erased my goals and schedules for the rest of the year and won’t be setting new ones for a while.

My apologies. Bear with me while I sort myself out.

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Pardon My Silence

My life sucks.  I apologize for being so quiet, but I feel like I am now burdening my readers as well as my friends and family.

I’ve been trying to adjust to taking gabapentin and flexeril to treat my pain.  I feel disassociated from reality all the time.  I have a break down about once a day where all I do is cry.  Sometimes it’s because I have trouble remembering how to do small tasks, like opening a damn Ziploc bag and not the one with the slider, but the ones that pull apart or because I can’t remember how to put my bra on – never thought I’d forget that, or because even though it takes the edge off the pain, I still can’t do a fucking thing and I feel like I’m a burden to everyone in my life.

I’m severely depressed.  I’m thinking about admitting myself to an inpatient program for a while.  But then I wouldn’t be home to help my mom take care of my great nephew, further enforcing the notion that I am a burden on my family.

I’m stuck in a cycle of self-loathing and anger.  I hate the meds.  They make me feel like shit.  Taking a nap doesn’t make me feel any better.  Staying awake doesn’t make me feel any better.  It’s not just the disassociation with reality that’s the problem, they actually make me feel sick.  I’m chronically tired.  I’m chronically confused.  I don’t enjoy doing anything. I can’t decide if that’s a side effect of the meds or the depression.

I tried to read a book the other day and even though it should have been easily understandable, I couldn’t follow it.  I wrote the damn thing and I don’t remember being told Elysium Drams is confusing and hard to follow.

It is now straining my marriage, although my husband has agreed that couples’ counseling could be helpful and he’ll go if I want.  I don’t want to talk to any of my friends.  I don’t want to be most days, which also makes me cry and that makes me even more tired.

Hopefully today, they figure something out and start doing something for me that doesn’t involve me not being able to remember my own damn name or becoming addicted to opiates, because that is the only other thing that gives me any relief is Vicodin… No, not true, my butalbital also helps the pain… Also addictive.  So much fucking fun.

#MeToo Statements

The Me Too statements flooding social media are not complaints, they aren’t whining statements meant to get us attention.

Their purpose is to remind others they are not alone and help break the culture of silence that surrounds sex crimes.

I occasionally wonder if my former step sister has kids and if she has molested them. I also wonder if I had spoken up at six instead of 26, if she would have gotten the help she needed because I’m pretty sure the reason she molested me was because she was also a victim of abuse.

Yes the statements are sad and uncomfortable to read or look at, but they are positive messages of support. They say: it is has happened to us, you are not alone. If you are currently being abused, speak up about it, we have your back.

Please stop acting like they are hostile statements of whining and bitching. They aren’t. They are among the most positive thing I have seen on social media for a long long time. If you see one and feel the need to comment or express some emotion give it a like or a love or a retweet. If you feel the need to comment, express support and love, not negativity. It takes a lot of courage to write those two little words.

Saddening

As I scrolled through my Facebook and Twitter feeds last night, I was saddened to see so many of the women in my life posting “me too.”

Sexual assault is a serious problem in society. It isn’t just boys being boys and no woman deserves it.

It’s a violation of our most basic right: the right to be. Because sexual violence, abuse, and assault take away a piece of our souls. Something inside us dies a little when we are victimized. And not just by our attackers, but by society as well.

I kept my mouth shut for a lot of years because I was sexually abused by another woman. My step sister was several years older than myself. I didn’t know what to do or how to tell people or what people would think of me when I did finally starting talking about it.

And I was right to be afraid. The first person I ever told responded with “it was just sexual experimentation.” At my expense. I was 6 years old and not interested in sexual experimentation. Hell, I didn’t even know what sex was yet, let alone what experimentation with it was.

The worst part, victims of sexual assault or abuse or more likely to become victims of it at later times in life.

So far, I’ve been lucky. I was only sexually abused by one person and it has never happened again. But I am not in the majority.

Even after therapy, I can see some of the effects continue to exist. It isn’t something you just “get over”. All of those ladies posting “me too” on social media are proof that they might be dealing with it, but it left some scars. Some it might have made stronger, some it might have weakened, I know at least one person it broke completely and she committed suicide in high school as a result.

It was my first taste of being powerless. It is something I have strived to never feel again. It’s also why I have trouble writing about sexual sadists and child killers in my books. The feelings of the victims hit too close to home for me, even if they are fictional characters.

In my opinion, sex based crimes should be treated like murder with no statute of limitations, because all victims feel a piece of them has been killed. Which is why I said it violates our most basic right “to be”. Rarely does the person we were before the crime survive. We are forever altered by the experience and often the woman that comes out the other side is different than the one we were before.

CRPS & United Healthcare

The rheumatologist I saw today doesn’t think it’s lupus, she’s thinks it is CRPS.  Fun.  Nothing like a strange disorder with no understanding of what it happens to brighten a girl’s day.

On top of that good news, my husband found out at work that our health insurance is doubling next year.  Not only is it going to be $1,600 amonth to cover both of us, but the deductible went up, the out of pocket went up, my copays are going to be higher.

Essentially, United Healthcare doesn’t believe it is making enough profit off me.  They probably aren’t, but like my husband hasn’t been to the doctor since he caught fire at work over a year ago.  So his premiums are just going straight into their pockets and worker’s comp paid for all those bills.

This is the shitty part of the health care in the US.  I can’t do anything about the fact that I might have lupus or CRPS or MS or another disabling and debilitating disease or disorder.  Hell, medicine doesn’t even understand why CRPS happens.  I asked the doctor today if there was really I could do about the CRPS… if I remove all caffeine for instance, will that help?  Nope.  Quitting smoking won’t affect it either.  I already eat less than 1,000 calories a day, I’m fat because I like soda and I’m constantly thirsty because I have Sjogren’s, not because I don’t eat healthy.

I feel like I am being penalized for having bad genes.  Things I can’t control.  Things that I can’t change.  Things that even my parents couldn’t control.

Yes, I’m sickly so I should pay a little more than my husband who has used his health insurance once in 9 years because he got flu.  However, I shouldn’t have to pay for someone’s fucking yacht because I’m a little sicker than my husband and my husband shouldn’t be paying for someone’s fucking yacht because he has insurance he doesn’t use.

As someone who is technically among the middle class, I feel like I can’t afford to be healthy or see the doctors I need to just live.  I can’t even begin to imagine what it is like for low income people who don’t qualify for assistance.  In the last four months, my quality of life has crashed.  I feel trapped by my injury/illness/whatever the hell it is… the vicodin is the only thing keeping me sane at this point.

I hate to say that because I’m not a huge fan of opioid use, but I can’t continue to live in pain to the point where walking down the hall makes me want to cry.  And it’s only been four months…  What happens when it’s been four years?  Or my insurance premiums continue to rise to the point where I can’t afford them and I can’t afford to go to the doctor without them?

I’m worried enough about this being a chronic, intolerable pain condition enough that I have offered to let my husband out of the marriage with no hard feelings.  I’m not me when I have to deal with pain like this all the time and I know it.  I’m crankier.  I don’t want to do things I love.  I don’t want to be most days.

Making care and treatment unaffordable and unavailable doesn’t help.  When I was at the rheumatologist’s office, I noticed a sign hung up in the patient room.  Patients with chronic pain conditions that have been on opioids will no longer be able to get refills for more than 10 pills in any 30 day period.  Where does that leave people?  I can’t take NSAIDS or corticosteriods orally.  I can’t really take Tramadol effectively.  Which means my quality of life will just have to remain zero if opioids are the only effective treatment for my pain.  I know I’m not the only person on the planet with these problems.  Plenty of people can’t take NSAIDS or prednisone… So we’ll just all have to live in pain if those are our only options.

We didn’t create the opioid crisis, pharmaceutical companies by offering incentives to doctors who prescribed them often.  And by not trying to find alternatives.  However, it’s patients that suffer and we suffer even more because our insurance isn’t going to pay for expensive meds like Humira.  Hell, my current insurance will only pay for Sumatriptan migraine medicine, which makes me feel like I’m having a heart attack.  Any other prescribed migraine meds cost me hundreds of dollars per dose.  So I take one that’s addictive: butalbital – if you were doing fun drugs in the 1960s and 1970s, you’ll recognize it as a barbiturate or a downer.

Sorry, I’m ranting.  I’m just frustrated and scared.  I’m so tired of being treated like a non-human being by insurance companies, the government, and pharmaceutical companies, that I want to give up at times.  I feel subhuman because of my genetic make-up…

Good news is, the donation someone gave me to start my Scentsy business has been used to start my Scentsy business and I’ve already started making money.

Writing & Smoking

My husband is planning to set me up a mobile workstation in the garage. I find it surprisingly difficult to write without a cigarette burning in the ashtray.

I’d say it was difficult to write without smoking, but the truth is, I mostly lit a cigarette, took drag, and then let it burn out in the ashtray… only to repeat the process a little while later.

Now that we don’t smoke in the house, I find myself taking real cigarette breaks. Which screws with my train of thought and I forget where I was going with things.

However, it’s interesting the smells a house holds. Once in a while, I’ll open a cabinet, particularly in the bathroom, and get a whiff of pot. No one in my house smokes weed, so it has to be residual from the last owners. Especially, since it is more likely to happen in the master bathroom.

The NFL Interview No One Is Talking About

Everyone thinks it is terribly disrespectful for NFL players to take a knee during the National Anthem, but no one has heard why they choose that particular stance to protest.  It isn’t meant to be disrespectful of the anthem or the armed forces or the flag, it’s meant to represent a flag at half mast.

Colin Kapernick and Eric Reid who began the protests actually consulted a retired Green Beret before deciding what stance to take to protest the militarization of most police forces in the US.

Regardless of whether you agree or disagree with NFL players protesting on the job, read the article and try to understand why they are doing it.

NYTimes interview with Eric Reid and I agree with Reid, kneeling is more respectful than sitting during it.

Wow and Wow

Yesterday was a bad day for me mentally and physically. However, the out pouring of generosity from my readers was amazing!

A few people took the initiative to bug me about how to donate to my medical funds and actually gave me enough to pay off one of my bills.

Another reader sent me a PayPal donation with a note telling me it was to start my Scentsy business because she believed I could still write books and sell Scentsy and the extra money I made off Scentsy could help with editing bills, medical bills, and life adjustments as we figure out what is wrong with me.

Finally, one reader begged me to set up a GoFundMe. She claims my books are too cheap and she has no problems giving me extra money while dealing with this medical crisis.

I spent the majority of my day crying and telling my editor how amazed I was. I also took the donation for my Scentsy business and signed up.

The other money will go towards prescriptions and medical bills.

It was unexpected and completely mind blowing. I felt very undeserving of the kindness and forever grateful.

I don’t get moved to tears very often, but you guys managed today. As a writer, I feel silly because I don’t have the words to express my gratitude.

You are all amazing and I love all of you. 😍 thank you so much from the depths of my soul.

Now back to work on Demonic Dreams!

Trick or Treat GoFundMe

Since I’m too old to trick or treat, maybe I should start. Trick or treat GoFundMe. If everyone donated a $1, I’d pay off about half my current medical bills.

Basically, my insurance is trying to screw me. Since I was originally misdiagnosed with a Urinary Tract Infection, they see no reason for me to continue to have treatment on my hip. After all, a round of antibiotics should have cured me.

Except it didn’t even come close… so the injections and subsequent visits to the ER, urgent care, pain management doctor, iridologist to prove it wasn’t a urinary tract infection, the injection, the MRI, the nerve ablation, and testing for disorders like Lupus, they don’t feel they should have to pay for because if I had taken the antibiotics as instructed, I’d be cured.

Never mind that I did take the antibiotics and was far from cured. They don’t want to pay for any of prescriptions related to my hip or back problem (because I have a tear in a disc that is causing back pain (and yes, I’ve seen a chiropractor and been doing acupuncture – neither are helping with either the hip or the back).

I feel like I’m drowning. I am still having issues working. I can’t seem to make enough money in a month no matter how well I budget. I can’t get a second job at the moment that would require me to go somewhere other than my house because I can’t drive. Plus, I would have to be careful about the number of hours I worked since standing kills me and sometimes, sitting is just as bad.

I need to win the lottery, except I don’t play it because it seems like a complete waste of what little money I do have.

Anyone else ever feel like they are drowning? Or like the universe is out to get them and they don’t know how to fix their karma to make it stop? Because that is where I’m at.

Ok, I’ll stop throwing my pity party, pull up my big girl peekaboo panties and pray for a miracle, because that is currently what I feel I need.

Things I won’t Share to the HJ Page

Pleas for money.  I got hit by another author today asking me to add the link to her GoFundMe account.  It appears she needs money for a vacation.

If she needed money for an audiobook, it would be different.  That I would share.  There is a huge ebook market, but getting one made is expensive, like super duper expensive.  Tortured Dreams cost me a little over $6,000 and I have made about $400 of it back.  So, I’m actually in that boat.  Unless I find a sponsor, Elysium Dreams will never it make it into an ebook.

However, I refuse to share a fundraiser for a vacation… especially right now when there are so many things at home that need money.  Hell, I need money.  Trying to figure out if I have lupus or something else is breaking me.  I currently have payment plans of the bare minimum set up with all my doctors involved because I owe my pain management doctor several hundreds.  It’s getting to the point where there are times I wonder if I can afford my medications (see why I want a second job like a Scentsy consultancy?).

Sadly, with the multiple misdiagnoses and attempts at treatments, my finances are so out of whack, that even if I finished Demonic Dreams tomorrow, I couldn’t afford to pay my editor.

So, no, I won’t share your GoFundMe for your vacation or so you can take a year off work to write your novel or whatever other ridiculous thing you think you can raise money for without working.  If you have a real fundraiser, I’d share that, but I won’t assault my readers with fundraisers so you don’t have to work.

Rant over.

C Patt

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