Personal Update

Some of you have asked where I’ve been since I haven’t updated much in the past couple of years. I know many of my longer work-in-progress fans have despaired of my ever finishing those stories, but I really do intend to write them, and now – at last! – I’m beginning to see the light at the end of the tunnel.

Many of you know that I have a rare form of rheumatoid arthritis (RA) that responds only to biologic treatments (like Enbrel, Humira, and Orencia), which are heinously expensive even when you have decent insurance. I haven’t had good insurance since I quit my full-time translating job and went freelance – which was still the best decision I ever made and has helped lower my blood pressure and other health risks significantly – so my rheumatologist suggested that I volunteer for a new protocol being tested by a pharmaceutical company. Since I’d already participated in a similar study for a related drug (*cough* PhilMickelson *cough*), I was glad to do so. The best part: free meds! Since you’re sacrificing your body for medical science, they provide all the treatments and testing for free. Yay! 🙂

Unfortunately, for the past couple of years I have had a severe, prolonged case of writer’s block. Even when I knew exactly what was going to happen in the story, I couldn’t string the words together to construct it. I didn’t even enjoy reading anymore. I chalked the former up to the stress of not having regular work (that’s a whole ’nuther post) and the latter to the fact that I’d started proofreading, which made grammatical errors stand out even more and distracted me from the stories. Occasionally I’d manage to write a chapter or so, but even such short goals became grueling, uphill tasks.

Then a couple of months ago, my doctor’s office called to tell me that the test was being canceled. It was supposed to run for 5 years and it had only been 3 years and a few months. The reason? Too many patients were reporting the side effects of depression and thoughts of suicide. The pharmaceutical company decided that it was too risky to continue developing for the market – even though a lot of drugs have depression and suicidal thoughts listed as side effects, this one apparently was severe enough to make it a liability.

When they told me, it was like the proverbial light bulb going off in my head. No wonder I couldn’t write or manage to do anything creative! I’d been suffering a mild case of medically-induced depression. I’ve been off of the protocol drug for a few weeks now, and already I’m feeling a difference. The words flow more readily, even though I need to re-word and edit the heck out of them (something I didn’t have to do as much before), and I’m gradually trying to get back into the swing of writing again. 🙂

One thing I’m really thankful for, though, is that this new protocol cleared up my psoriasis. The other biologic treatment I’d taken before had kept the affected areas from spreading but had not been able to decrease the surface area. The protocol drug – which didn’t even get named before they canceled the research – made my skin clear up in just 3 days! I’d had patches of red welts on my face and neck and back for 15 years, and for the first time since I’d presented with psoriasis, I was able to see my own face in the mirror – not the disease! I’m especially glad that I was part of the test since, if no other pharmaceutical company decides to pursue developing this particular drug, it will never be available on the market. I am so blessed!!! 🙂

So now I’m just trying to get my current insurance company to let me go back to the previous biologic drug. They rejected it at first, of course, since it’s a lot more expensive than conventional pills (cheapskates!), but my rheumatologist has already filed an appeal, so I’m keeping my fingers crossed.

In other good news, I was finally able to pay off the last of my medical debt this week! This was for another thing entirely – I had called my then-insurance company (*cough* BlueCrossBlueShield *cough*) to make sure they would pay for a sleep study since I was sure I had sleep apnea. My dad had it, my brothers have it, and my mom could hear me stop snoring multiple times at night. The person who answered my call said yes, of course they would cover it as long as I could prove that I had apnea. Confident of the outcome, I went to get the sleep study done which – surprise, surprise! – proved that I did indeed have sleep apnea. The hospital billed my insurance… who promptly refused to pay because I hadn’t gotten “prior authorization.” 😦 It seems I ought to have had their representative provide a written statement, signed in the blood of their firstborn and calling a curse upon all their progeny if reneged, detailing which specific procedures they would pay for. Grrrrr…..

Long story short, I was stuck with over 8 thousand dollars to pay for out of pocket. Which, after working my considerable ass off (not that you can tell by looking at it) for the past 2 years, I have at long last managed to do. It is a very good feeling to finally be debt-free! Broke, yes, but that’s still an improvement. 🙂 And my mom – who, worried over my bouts of non-breathing, was the impetus for my getting the study done in the first place – bought me a CPAP machine (“Continuous Positive Airway Pressure” = basically a fan that pumps air into your nose so your airway doesn’t get blocked and prevent you from breathing) which has reduced my non-breathing bouts to less than a tenth of the previous frequency. As a result, my blood pressure has come down to a normal range, allowing me to stop taking the drugs for it (un-heard-of for most people – unless they have apnea and get a CPAP). I feel better rested, too, so all in all I would have to say it was worth it, despite the hassle and stress of the insurance company being a total jerk.

Anyhow, thanks for reading my long rant! I’d just like to advise you to always, always, ALWAYS get “prior authorization” before having any major or expensive medical procedure done. Oh, and if you think you have sleep apnea, do get it checked out – you’ll feel so much better once you start using a CPAP! And also, if you have the opportunity to participate in a medical research study, just do it! Seriously, it’s worth the time and effort. You might get in on a really good deal like I did, and even if you don’t, you’re contributing to our species’ medical knowledge.

Okay, rant over! Please stay tuned for more story updates! 😀

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  1. Mark

     /  2015/08/20

    I’m so glad you are feeling lighter and yourself! Medicine is so tricky and cumbersome and our bodies are so reactive we forget how much of a toll taking some pills can really take. Congratulations on being freer and happier, lots of love 🙂

  2. Wow ! Just wow ! Thanks for sharing so much of your personal life. You’re like… a SOURCE of INSPIRATION ! *admire*

    I have been following you for your POI fanfictions and now, I’m really glad that things are going better for you !

    Health and happiness first 🙂
    Take care and courage !

    • Awww, you’re so sweet! I do hope to get back to writing POI fanfics again, although it’s a bit hard to with the current Samaritan arc. But love will find a way!! 😀
      Thanks again!!

  3. oh Honey!!! Yes, depression will suck the very soul out of you making it near impossible to create. I am so glad you got the treatment but am also happy you are out from under the cloud of depression.

    • The worst part was not knowing WHY I wasn’t able to write! But yes, coming out from under that cloud has been sooo rejuvenating. Thanks for R&Ring! 🙂

  4. Jackie

     /  2015/08/21

    Holy beuracracy, Batman, you’ve been through some stuff lately. So glad you’re feeling better and getting back on your feet, both medically and financially. All my love and luck to you! 😚😚😚

  5. Mikhaela

     /  2015/10/08

    Hey Gurl,
    I love this fic so much but I love you even more after reading this! You’re so strong, and I pray that you continue getting better. Remember to always take good care of yourself, esp when you need it the most.
    Love ya!


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