'Sup?

So, again I’m guessing you’ve noticed I haven’t been blogging at all lately, which means my previous vow to blog through thick and thin was nothing but a dirty stinkin’ lie.

However, here’s the thing:  this summer has pretty much been a complete medical nightmare for me, and I just couldn’t really see talking about that every few days.  Everyone seems to be having a rough time these days, so I know I’m not alone, and everyone has plenty on their minds without me giving a blow by blow of another sucky day I’m having.  So, that’s pretty much why I haven’t written in a while.  Deal.

I will admit to finding clever ways to whine a bit though (at least I think they’re clever).  Like yesterday I went to see my RA doc and I said, “In the last five weeks I’ve had the worst pain I’ve experienced since I was diagnosed, but I’m thankful that I can sit hear and tell you about it.  (He rolled his eyes.)

I find myself worrying about my relationship with my doctor.  I really like the guy and I think he’s a great doc, but . . . He is extremely thorough in his examination (which normally is a good thing since most docs seem to try to set a land speed record for getting you out of their office), but part of my doc’s examination is to check and manipulate every joint in my body.  He has a gift for just feeling a joint and knowing how much pain I’m experiencing; I rarely have to say a word.  However, and here’s the big However, the exam really hurts; like call out your mama’s name hurts.  And it takes me several days to get over all the pain and swelling from just the exam.  So my dilemma is:  why do I like a doc that hurts me so much?  I mean, come on, that’s really kind of twisted.  And worse, I pay him to do it.

I left his office with a handful of new and stronger prescriptions, my name on the nurse’s chalkboard for all the cuss words that slipped out during the exam, a new appointment scheduled in a month, and a warning that next time I hurt that bad I should call sooner. 

Say what?  I’m here to tell you I didn’t put up with it.  Oh sure I took the prescriptions, apologized for my potty mouth, and will make the next appointment (God willing), but there was no way I was going to take the blame for not calling sooner.  I looked my doc straight in the eye and said, “It’s not my fault I waited so long to come in.  I tell you I’m experiencing the worst pain in my life and you expect me to think rationally.  That’s just silly.  That’s like going up to some guy you just ran over with your car and saying, ‘Didn’t you see me coming?’” (He rolled his eyes again.)

I am hopeful that some of the med changes we are making will help me get back on my feet, and that I’ll be able to get back to writing again soon.  I’ve lost momentum on several of my projects, like I still don’t have a cover for Fighter’s Bane and stuff like that, but I have been working out a storyline for a new manuscript and I’m pretty excited about how it’s coming together.  So, cross your fingers that the meds work, and hopefully I’ll be telling you about my new story in a few months.

Dog Days of Summer

I know it’s been a while since I’ve written.  Sorry.  I think about blogging everyday, but these last few months have been so bad for me, that each time I started to write, all I’d put down on paper was sentence after sentence of whining.  So, I’d delete it and hope the next day would be better, figuring you really didn’t want to hear me blubber about my life.  My wife, however, thinks blubbering, or sharing as she puts it, would be good for me, and she is a very wise woman, yet somehow it was just easier for me to suffer in silence.

This blog, then, is a small compromise.

In short, at the beginning of the summer, my doc and I had to make some adjustments to my medication because what I was using was not keeping up with the progression of the disease.  Well, my body didn’t handle the adjustments.  I actually blogged about Remeron, so that might give you a better idea of how the summer has gone for me. 

So, with the bad reaction on my part, additional adjustments were made, and my body liked those even less.  My blood pressure shot up, stayed up, and three trips to a cardiologist haven’t helped much.

To make things worse, at least in my mind, my Rheumatologist (who’s one of the most remarkable people on the planet in my opinion) took a long and much deserved vacation.  Of course, I waited until he was gone before I fell completely apart, just so he could enjoy himself.  I finally saw him Tuesday and informed him that on his next vacation he’s taking me with him.

However, the result of that meeting was again, more changes in medication.  Including, and if you listen out your window you can hear me crying no matter where you live in the world, the removal of one of my very favorite medications.  He suspects that it’s the real culprit behind my blood pressure changes, but I didn’t care, I didn’t want to stop taking it.  The whole scene was pathetic, with me holding onto his leg, crying like a baby, pausing periodically to scream “No” and then crying some more.  Later I felt bad for him, since he had to drag me along on all his afternoon rounds before the nurses finally pried me off his leg.  However, my favorite med is no more.  Sigh!

I’m trying to adjust to the new meds he prescribed, but mostly I’ve been a vegetable the last few days, in part due to the new meds, and in part because the days after the RA exam are always bad for me.  Add to that that today was “shot day” and it’s not been the best week.

However, on the bright side, the summer wasn’t an entire waste because I’ve been working on two new books.  Whenever I get an idea for a story, I try to get it down as a synopsis, and then I dig into background details.  Names, for both characters and settings, often take me the longest to figure out.  Sometimes when I’m brainstorming that, I’ll start writing out scenes to help me organize my thoughts.  None of that is as fun as writing, but it all has to be done, and so that’s what I’ve been digging into during my rather sucky summer.

About a week ago I started actually writing one of the stories, and I like the results so far.  I can’t sit at the computer very long before the pain gets unbearable, so I have to work a little bit here, a little bit there.  This one story is coming into my head fast and furious, so I’m really bummed at how slow I have to go, with all the breaks and so forth, but writing is helping me cope with everything, so that’s a good thing.

And in the big scheme of things, I remind myself that life could always be worse, so I try to appreciate what I have now, and make the best of it.  I really will try to do better on the blog thing.  Marna thinks I should blog about all the medications I use, their side-effects, things like that, but I’m not sure that’s what folks want to hear about.

I admit, it’s interesting having RA and trying to establish myself as an author.  Not always fun, but most definitely interesting.

Shot Day - in more ways than one

All Right, so I just gave myself my Humira Injection, and I’m writing this with the hope that it will distract me for a little while. 

Every two weeks I have this nice little thing I call “Shot Day.”  I give the whole day homage because the psychological trauma, pre- and post-shot ritual, pain, and side-effects seem to make the entire day tremendously Sucky!

You’d think that after taking this medication for two years I would be an old pro, but sadly, I am not.  The truth is that every two weeks I dread Shot Day as much as I did that very first time.  I mean come on, getting used to sticking a needle in your leg should not be something that becomes old hat.  (By the way, Humira cutely calls their NEEDLE a Pen – give me a break.)

Now before any Diabetics jump down my throat and stomp on my liver, I humbly admit that your plight is much worse than mine, at least in terms of needles, etc., and I have nothing but the utmost respect and pity for you.  However, in my defense, I’ve been told that the type of medicine I inject, and the needle size I use, is different than any other types of medications out there, and that the injection is difficult (a gross understatement) for everyone.  But I tell you with the utmost sincerity, that does not make me feel one bit better.

I love how the manufacturer says the medication may sting.  May Sting!  It does NOT sting.  I was a beekeeper for over a decade, I know about stings, and I’d gladly welcome back my little furry friends in exchange for that stinking needle (yes, I have a thing about needles, but still).  The first time I gave myself the shot, I screamed so loud for my Momma that she opened the door to see if I was outside, AND SHE LIVES TWO STATES OVER.  I’m perfectly fine with my masculinity, so you can take my word that I didn’t break down and cry, but I did cuss like a sailor (to those sailors who do not cuss I apologize) for a while.  Sting my flabby fanny!  (Which, by the way, is not where the shot goes.  You can chose either the top of the thigh or the stomach below the belly button – yeah, right, I’m gonna jab a 3-foot needle in my belly and call it a day.)

I have learned, over time, that when I hit the button on the self-injector, and the massive needle rips into my tender flesh, one of two fates await me:  Either the shot will be excruciating for a couple of minutes and then fade into just a dull ache with lots of bruising; or the shot will sting (I use that word with heavy sarcasm), for a couple of minutes and then my leg will feel like I plunged it into a cuisinart, plus, it will hurt like the dickens (which I’ve heard is a euphemism for the devil) for the next few days.  Hard to believe, but I prefer the excruciating two minute pain, because the cuisinart thing is really unpleasant (yes, more sarcasm).

I’d tell you more about the process (like all the prep I have to do leading up to the shot, etc.), but sometimes it helps to walk around a while after the shot, really I mean hobble while dragging one leg and whimpering, and so I’m off to tour the house (and most likely call out for salvation each time I accidentally bump my leg).

In closing, for those of you who don’t know much about Humira, despite the rather unpleasant process of stabbing myself every two weeks, nothing has worked to reduce my RA pain as much as Humira has.  For the most part, the medication works by suppressing the immune system, which is where the bulk of the relief comes from (remember, with RA it’s your immune system that is trying to kill you). 

Sometime, when I’m not blubbering as much as I am right now, I’ll try to do a better job in discussing the benefits of Humira, but for right now I seem to be heading toward the cuisinart result I mentioned earlier, and so I’ll leave you with the only thing worth saying:  MOMMMMMMAAAAAAAAAA!!!

Can You Hear Me Snoring?

Once again I apologize for not blogging sooner.  I’ve pretty much been asleep for the last 3 weeks, and I found that seemed to conflict with typing anything.

I’m currently on 11 medications for my illness; yes, I did say 11.  There are actually a few more I could add to that list, but I only use them as needed, so I think just mentioning the one’s I take daily gives you some idea of what I deal with.

I’ve arrived at these 11 over a period of several years involving a lot, and I do mean a lot, of trial and error.  I’d say for every one of the 11 I’m on now, I’ve tried 3 before I found the one that worked.  In other words, I’ve been my pharmacist’s best friend for a while now.

However, in my overall therapy, I’ve still got some holes.  I especially struggle with medications for my Fibromyalgia and the depression that comes as a result of the weird chemical imbalances my RA causes.  So I’m still experimenting with finding meds for those areas, and especially looking at medications that do both.

Unfortunately, the best one I found for helping both, Savella, worked great for several months and then started giving me such debilitating headaches I just couldn’t stand it any longer.  My doc and I tried several ways to trick my body into accepting the Savella, but we finally had to throw in the towel when I started screaming for my mommy and crying like a baby about the headaches.

(By the way, if you suffer from Fibromyalgia, you should talk to your doc about Savella.  I don’t make any money from them, so I’m not a spokesman, and I no longer use the medication, but, and it’s a big but, while I was on the stuff my pain levels were consistently at their lowest point since being diagnosed.  I’m telling you, I had a little hissy-fit when I realized the most effective medication was out of my reach just because of a side-effect.)

So, last month, when I saw my rheumatologist, we picked another medication for me to try adding.  Intriguing enough, my doc’s fear of suggesting this particular medication was because it is known to have an “energizing” effect, and since I often struggle with insomnia, my doc was hesitant to prescribe something that would “amp” me up.

However, in hindsight, he had nothing to worry about.  I really don’t know why I’m so weird, but the medication had the exact opposite effect of what we expected.  The titration was to start off with a low dose, and then double it after a week, and then again after another week. 

About the second week I fell asleep.  And I’ve pretty much been asleep since then.

Okay, so I’m exaggerating a tiny bit, but I swear, that’s very close to how it worked.  Even when I was awake, all I wanted to do was sleep.  I would sleep for 12 to 14 hours, wake up to take my pills, stare at the tv until it went out of focus after a couple of hours, and go back to sleep for another 12 hours.  One day I slept for 21 hours.

Now I’ve mentioned in other posts that Fibro likes sleep, but too much sleep really ticks RA off, so you can imagine, or maybe you can’t, that by sleeping that much I really, really, really ticked my RA off.  So basically, I’d sleep while writhing in pain and dreaming about being tortured. 

Here’s the kicker though:  when I was awake, I was very relaxed, laid-back even, and my family agreed they loved that about the new medication (I mean, come on, was I that bad before?).  I admit, I was indeed laid-back, because the only thing I really cared about over the last month was going back to sleep, pain and all.

So, tomorrow I go back to see my RA doc, and have to explain to him how the medication that causes “excitability” actually put me to sleep for a month.  That ought to be a fun conversation.  Plus, we will start the whole process again, because I really do need something more for the pain I deal with each day.

So, I apologize for not blogging, and all I can do is entreat you to enjoy the silence while you can, because next he might prescribe a “sedative” and I’ll be so amped-up that I blog ten or twelve times a day.

New Reveiw at YABooksCentral

There's a new review of Davina's Magical Radio at YABooksCentral.  Right after the review went up they changed their entire website, so it took me a little while to track down where the review was at after the change, but the link above is the most recent one that is accurate.  Check it out and let me know what you think.

Sorry I haven't been blogging lately, I've been so down-and-out that I haven't even been logging on these last few weeks.  Sometimes weird things happen to me with all this RA stuff, and the last few weeks has been no exception.  I'll spare you the details this time, but again, I'm sorry about not staying in touch.  However, I will try to do a better job of blogging in the future.

The paperback copies of Davina's Magical Radio are now available here.  I have to admit, it's pretty exciting to have a printed book for sale, and just holding a copy in my hands is amazing.  However, with all my RA baggage, I've been slow getting the word out.  But I'm working on it, slowly but surely, and I could sure use your help.  If you've read it, or when you read it, please take the time to put up a brief review on Amazon or wherever you got your copy.  Thanks!

Celebrate

Today’s my anniversary, Sunday is Father’s Day, and next Friday is my birthday; I know I’m whining, but it seems unfair to have so many cool days jammed that close together.  It’s like having your birthday in December, you just know you won’t get as many presents as you would if your birthday was in another month.  So, I’ve decided to not just enjoy my three jammed-together days individually, but make the whole week one big celebration, with feasting, music, and frivolity!  So (claps hands), let the games begin!

Other than that, I've been dealing with an ugly flare-up these last three weeks, sorry about not posting.  I hope I'm headed in the right direction finally.

I haven't been doing much marketing, but when I can I've been working on the sequel to Fighter's Bane.  I'm still hoping Fighter's Bane will be out this month.  I'm waiting on feedback from a couple of folks, and I need a cover.

In the middle of the night I got an idea for a werewolf book, so I've been furiously jotting down notes since then.  Who needs sleep?  It's so overrated.

My Brief Romance with Remeron

Okay.  Okay.  I know that title is slightly provocative, but it caught your attention, didn’t it?  But, not wanting to lead you too far astray, I must admit that Remeron is a medication and not a woman with a strange name and loose morals.

For the record, Remeron (the generic is Mirtazapine) is used for several things.  In higher doses it is used to treat depression, and is also sometimes used to treat eating disorders because it causes rapid weight gain.  (However, I can do the rapid weight gain thing all on my own, thank you very much; I certainly don’t need a pill to do that.)  But, in small doses, Remeron is used for insomnia.

So, the true beginning of my romance with Remeron starts about three weeks ago.  I’ve mentioned lately that I’m fighting a lot of pain, at times so much I can barely stand and have to use a cane to support myself while I walk, so it’s no real surprise that I started having trouble sleeping.  I would fall asleep okay, no problems there, but I’d wake up in 2 to 3 hours, doze for another hour, and then not be able to fall back asleep at all.  Now 3 or 4 days of limited sleep I can take, it really happens all the time to me, but usually after about 4 days I have several nights of really long, peaceful slumber, and wake feeling as refreshed as possible for someone with advanced RA.  However, my catch-up days never happened this time, and at the end of two weeks of only sleeping for 3 hours a day, I was pretty miserable (an understatement) and looking for any kind of help I could find.  And so, Remeron enters the picture.

Remeron has kind of an unusual quirk, the lower the dose, the better it is at making you sleepy.  Strange, but true.  So, my doc prescribed that each night I take half of the lowest dose on the market.  And so I did.

By the way, as a side note.  Along with the RA I have Fibromyalgia.  Now those two diseases often go hand in hand, but they have some strange quirks of their own.  For instance, Fibro likes exercise, but RA not so much.  If you do too much with RA, you most definitely will pay.  Fibro also likes sleep.  If you can get 7 or 8 hours of good rest, Fibro loves you.  However, if you don’t get at least that much rest, Fibro is very vicious and makes you pay with pain.  But, on the other hand, if you’re not careful, and get too much sleep, your RA makes you so miserable you don’t ever want to sleep again.  So, balance is key.

But for me, after two weeks of only 3 hours a night, my Fibro caused me more pain than the RA did.  It was murder, I’m telling you!  And so, Remeron to my rescue.  Or so I thought.

Now, the first night, I took my prescribed dose, stretched out on the bed, put my little ear phones in and listened to some of my favorite music (right now it’s Tom Petty and Taylor Swift), and got ready for sleep.  However, I had read that Remeron only takes about 20 minutes to work, so after an hour I was thinking...well, you can fill in any word you think appropriate, but I was convinced it wasn’t going to work.  And then, voilà, I wake up 14 hours later – yeah, I said 14 hours later.  Unfortunately I felt like I had a hangover.  Huge headache, ringing in my ears, tremendous pain because I slept too long and my RA was ticked, and maybe worst of all, I felt exhausted, even worse than when I went to sleep.  Plus, I kind of felt like I hated the world; everything ticked me off.

But I figured, hey, so I’ve got some minor (lol) side effects to deal with, things will get better.  So, I struggled through the day, and at bed time took my little half of a pill and bam, I wake up 16 hours later.  And all of the bad symptoms from the previous day were even worse.  Plus, again, I felt exhausted, and my RA was Furious, and so punished me relentlessly.

Day three, bedtime arrives, and with some trepidation, I take my little half a pill and shazam, I wake up 14 hours later pretty much wishing I was dead.  It was a terrible day to endure.  Every bad side effect times infinity.  Mostly I stayed in my room. 

But when bedtime arrived, I thought, crossing my fingers, tonight will be better because a lot of the people on the forums say the side effects wear off after three days.  But as I’m getting ready for bed, Pip, my often annoying cat, starts whining outside my door.  It’s a problem sometimes, because he wants in the room, and the little stinker will literally throw himself against the door again and again and meow loud enough the neighbors could hear.  So, I shooed him away.  He ran, came back just as I got into bed, and I got up and shooed him away again.  Now I won’t get into the behavioral issues here, remember, this is a story about Remeron.

So, to make this long story shorter, I will tell you that after the 5^th time of this happening, I found myself chasing Pip through the house, throwing furniture and screaming at him at the top of my lungs.  It’s kind of funny when I write it, but it wasn’t really funny for me, Pip, or everyone else in the house.  I don’t behave that way.  I simply don’t.  There’s a lot of reasons I carefully control my temper, but control it I do; until that night.

So, realizing the only thing that had changed in my life was the Remeron, I decided to do a little more research.  And sure enough, it didn’t take long to find that one of the signs that your body is having an adverse reaction to Remeron is, now get this, RAGE.  I kid you not, that is exactly what I found, and exactly how I felt.  I think it actually said:  excessive aggression, explosive anger, and Rage.  Laugh out loud.

By the way, Pip is fine.  He’s a quick little booger and I never caught him, and even if I had I wouldn’t have hurt him.  Animal abuse should be a capital offense in my opinion.  So Pip was fine, gave me little Pip hugs afterward, and I apologized by rubbing my beard stubble all over his cheeks and neck (he goes crazy for that – it’s weird to some, but there’s nothing like hearing him purr when he rubs against my face).

So, night 4, no Remeron.  But dang if that stinking medication doesn’t have side effects for stopping cold turkey.  Now come on, I only took 3 half pills, so I didn’t expect withdrawal symptoms, but sure enough, the next few days were really wacky for me.

Thanks Remeron for pretty much ruining a week of my life.

Now I did read that Remeron helps a lot of people, and so I don’t in any way want to take away from the good that it does others, but it did not work for me.  Falling instantly asleep was neat, but the side effects were miserable.

So, I dumped Remeron after only a 3 day fling.  I guess I’m the love ’em and leave ’em kind of guy.