[Dear #QueensInExile] Why should you care for a woman like me? I’m always nervous or sick or sad or too gay.

posted in: Uncategorized | 7
Title: CAMILLE (1937) ¥ Pers: GARBO, GRETA / TAYLOR, ROBERT ¥ Year: 1937 ¥ Dir: CUKOR, GEORGE ¥ Ref: CAM008AH ¥ Credit: [ MGM / THE KOBAL COLLECTION ]

My dearest Sister Queens,

This is hard for me to write about.  I’ve been avoiding it for a few weeks because I can’t come to peace with it.  I’ve been on a medication that’s worked for me for at least five years.  This medication has been life changing for my fibromyalgia.  I can exercise, I can do yoga, I can go dancing, I can do a con, I can do Pennsic, I can write a book during tax season, I can be in the copy room on my feet, I can hold babies for hours.

I can do anything.

So because it’s had such a profound impact on my life, I’ve done whatever I’ve had to do to make sure I could keep taking it.  Jumping through hoops when uninsured, using most of my business’ money to pay for it, whatever I’ve had to do.  It’s expensive, needless to say.  But whatever stress I had gone through was worth it because my level of functionality was so greatly improved.  Sure, if I was stressed enough, if the weather was funny enough, if I had a grand enough weekend, I would still flare up.  My immune system is still crap.  I’m always in some pain and I need to sleep as much as a toddler does.  But I was leading a very happy and very productive life and frankly?  I felt damn near invincible.  Because the more I could be active, the more my fibro shut up.

And then my day career shifted our insurance plan slightly.  At first, this was great.  Same insurance company, better co-pays for me, all seemed well.  And then they took one look at my drug costs and told me to go fuck myself.  Well, no.  To be fair, they decided that despite my doctor’s protests (the doctor who has treated me damn near perfectly since a teenager) and my pharmacist’s protests, I should have to take a different medication for at least a month.  I’m only excused from taking another different medication because I have taken it already and all it did was make me fat and give me vertigo, but at the time, it was better than nothing.

I just cannot come to terms that some nameless (to me) insurance bro gets to decide what I do with my body.  Not me, not my doctor, not my pharmacist.  They do.  And I’m literally paying for the privilege to have my quality of life reduced and to add stress to my life which always does so many great things for fibromyalgia.

Again, to be fair, if this med was given to me after the first med, I’d think it was pretty great.  Daily life is more or less undisturbed and oh hey, it doesn’t immediately puff you up like a balloon which is neat, no vertigo (also neat) and it helps.

But I am again to a place I never wanted to return to.  Where I’m in more pain and more tired and yes, I can conduct my daily life but anything past that?  Anything strenuous at all like spinning on my wheel, going for a nice walk, driving to see loved ones out of state, cooking Thanksgiving dinner for my family, cleaning the house, doing anything more than be a working/television watching drone has to be considered very, very carefully.  So carefully that those activities either need to be assisted with or forgone all together.

And I can’t stand it.

I can’t stand that this medicine wasn’t given to me by my doctor due to health complications or because it might be even better than what I’m taking now, I can’t stand that I’m not living the fullest best life I could be living due to something I have zero agency over for the next month.  And then I have to worry if the fucking insurance company will try to be all, “I don’t know, baby.  I don’t feel like you’ve really given this a chance!  Let’s try for two more months!” And no matter how much I scream, my doctor screams, my pharmacist screams, they decide.  They decide and I give them money for it because as shitty as this is, I am much more afraid to be insuranceless presently in this political climate.

I can’t wrap my head around the fact that I don’t get to decide about my quality of life for the next month and then, when I am more weak and fragile than I’ve been in years, I have to go fight them to get what I knew I needed to begin with.

And as mad as I am, as frustrated as I am, as sad as I am and as powerless as I am, I can’t even be fully present with that because it’s too exhausting and I need to use almost all of my resources just to get through the day.  I hate that too.

So, I’m sitting with this in this new world order that most of us didn’t particularly want or ask for.  I don’t claim to have the answers to this issue in particular because I’m not sure I’d even have access to this medication if we had socialized health care, which would be terrible too.  I *am* saying, that my medication shouldn’t cost a full paycheck for a three month supply.  I’m saying that fellow humans shouldn’t have to suffer if there are better options.  I’ve worked adjacent to the drug industry, I know everyone needs money and science isn’t cheap.

But this is crap.

Give me life/ give me pain/ give me my/ self again.




Deborah Castellano
Deborah Castellano's book Glamour Magic: The Witchcraft Revolution to Get What You Want is available for purchase through Amazon, Llewellyn and Barnes and Noble.
Her frequently updated catalogue of published work is available on Author Central.

She writes about Glamour Magic here at Charmed, I'm Sure. Her podcast appearances are available here.

Her craft shop, The Mermaid & The Crow specializes in old-world style workshop from 100% local, sustainable sources featuring tempting small batch ritual oils and hand-spun hand-dyed yarn in luxe fibers and more!

In a previous life, Deborah founded the first Neo-Victorian/Steampunk convention, SalonCon which received rave reviews from con-goers and interviews from the New York Times and MTV.

She resides in New Jersey with her husband, Jow and their cat, Max II. She has a terrible reality television habit she can't shake and likes St. Germain liquor, record players and typewriters.  


7 Responses

  1. Excuse me while I spit nails and blood. I’ve had this happen to me too and there are no words sharp and painful enough to express how livid it makes me. If I could literally spit acid, I’d be showing up on doorsteps across the country.

    *Pause for 20 minutes of deep calming breaths*

    That said, one thing that helped me in some areas is going right to the drug manufacturer (if you’re taking a generic version, you might have several to choose from) – some will offer aid, some might work with your insurance directly and some may foot you the meds for free(-ish). Having your doc on your side will be a huge help as they can advocate on your behalf with the company. I’ve gotten medical equipment and even specialized blood testing that I would never have the cash for, this way.

    Hugs and good luck.

    • In my experience, this company will help when you are broke and insuranceless, but not so much otherwise. 🙁 It’s not generic yet, sadly.

      • I actually have insurance, but I’m also on disability and I’ve gotten aid. Though the tactic with the samples is a fantastic idea.

  2. Ro is right. Contact the manufacturer directly. Some of the larger companies have financial assistance programs. Another friend faced the same dilemma ($$) &, after filling out forms, now has the company shipping her med to her (for her economic status) free.

  3. Rolanda Gilbert-Eyke

    I’ve never had success with getting reduced/free meds from Big Pharma. What worked for me was samples. When I didn’t have insurance my doctor saved insulin samples for me and that’s how I survived. And yes, I’ve been just as angry as you when my insurance wouldn’t pay for the one medication that keeps me alive. Because it’s not fair having to prove why you’re entitled to live, let alone live well.

  4. “So because it’s had such a profound impact on my life, I’ve done whatever I’ve had to do to make sure I could keep taking it. ” I love this quote.

Leave a Reply

CommentLuv badge

This site uses Akismet to reduce spam. Learn how your comment data is processed.