Entries by Christy Bell

I realize that it has been a couple years since I posted on my blog, so this may/may not echo over to Facebook automagically. If it doesn't, I may once again give up on the blog idea as something that consumes too many spoons. There really hasn't been that much newsworthy in a while, given how hermitlike I can be, until this summer. By now, I am more than ready for things to go back to being boring and not worthy of news. ;D

Quite a few folks have been asking for updates, so I'm hoping to catch everyone with a single big post - skip if it is of no interest to you.

The short verision, for the impatient, is that, after FAR too many tests and running in circles with 3 different specialists in 3 different medical fields is that I have rheumatoid arthritis (RA) now, as well as (non alcoholic) fatty liver disease. But this took months of running in circles, tons of stress and expense, and considerable worsening mood (helped along by 2+ months on steroids and still counting). While chronic, the RA can be managed with medications for the rest of my life, now that they've ensured nothing dire is going on with my liver.

Phew!

For those who are unfamiliar with it, the redheaded laywoman's explanation is that my immune system is attacking and damaging various parts of my body. It is, so far, going for my knuckles and feet, although RA has been known to attack and damage various organs as well. There is no "cure", but it can be kicked into remission with only periodic flare-ups, with proper treatment. Go me, I get a second chronic illness in the medical lottery!

Now for the long version for those that are interested.

It started in mid-June of this year (2016, since my blog currently doesn't display the year on the entries) with the knuckles on my right index finger. I assumed a bit of tendonitis due to too much time spent in front of the computer and simply tried to pamper myself a bit for a few days. By the time I went to the doctor, knuckles on both hands were hurting and swollen, and my toes were starting to act up, too. She took one look and immediately said she wanted me to see a rheumatologist to rule out rheumatoid arthritits. Additionally, my thyroid hormone levels on the synthetic thyroid meds I've had to take since the thyroid cancer a couple years back simply refused to balance properly, so she got me a referral to an endocrinologist as well. And boom, she shooed me out the door - without starting any lab tests, much less telling me what I could do for managing the pain and swelling in the interim.

The referral took time, then there was the fact that the rheumatologist not only is up in my area one day a week, but was due for a 2-week vacation in there. And by "took time", I mean I wasn't seen until the start of August. During this time, both the pain and the swelling hit the utterly unmanageable levels. It was taking 2-4 minutes just to painfully traverse the one flight of stairs in my home (all 16 of them). I was having problems gripping, much less lifting and pulling. I had to adjust my bedcovers, painfully, a single layer at a time. I even ended up in Urgent Care with my first (please let it be my last) dilaudid iv due to hitting nonfunctional levels due to the excruciating pain. It was truly debilitating, life altering, and utterly terrifying. I was put on tylenol with codeine to make it through until the rheumatologist could see me.

I went from being a relatively high-function fibromyalgia sufferer to being worried I was about to become bedridden for the rest of my life. RA was mentioned, lupus was mentioned, the endocrinologist was worried about Hashimoto's and Graves diseases.

The rheumatologist had me go down immediately to the lab in her office building for 14 vials of blood work, and 6 X-Rays of hands and feet (I barely got the wedding ring off due to the swelling, and I now have it on a chain ). Within a couple days I had the RA diagnosis, and was on prednisone to control the swelling and pain because, of course, there was a catch.

My liver enzymes have been high for years. I even had a liver biopsy 3 years ago to be sure it wasn't anything major, and was told that it was non alcoholic fatty liver, and not to fret about it much. (There was also talk of it being unhappy due to how long I was on darvocet before it was pulled from the market due to liver concerns.) Then the thyroid cancer was found, and everyone pretty much dropped the ball on any followup on the liver. I hadn't even been aware that there should have been followup, much less that the doctors dropped the ball.

Anyway, the rheumatologist didn't like the look of my liver enzymes, even if they had been gradually lowering, and she didn't trust the folks that had done the work, so she wanted me to see another endocrinologist ... at an office that requires a 50- to 75-minute drive, depending on traffic. I was told it was necessary, to make sure my liver was ok before I was put on "RA biologics for life". Blarg.

Between all of the doctors, August and September were filled with tons of office visits, enough blood draws to make a vampire ecstatic, X-Rays, an ultrasound, a sonogram, a bone density scan, an MRI, and last, but not least, a liver biopsy. All of this ate up a lot of my "oomph", and the ones that required travel down to La Jolla had Adam taking days off work to drive me for most of them.

I feel like my needle bruises even have needle bruises by this point. As the most extreme example, 3-1/2 weeks after the MRI, the giant bruise from where they blew out a vein trying to run an iv for the contrast gunk, has finally faded into yellows and greens, though it is still much larger than an old-fashioned silver dollar. Owie.

I just got back from the one time that I drove down to La Jolla on my own, where I was told that the only thing wrong with my liver is what we already knew - non alcoholic fatty liver. For that, I had to drive over 2 hours, round trip. Instead of just being told over the phone "We can't find anything major. We're telling your rheumatologist that you're cleared for RA biologics", they made me go in. (I'm not even sure who the "they" is who put that note in my file, as the Nurse Practitioner who has been seing me says if she'd realized what they'd done, she'd have saved me a trip and just called me.)

Now I am back to waiting, but this wait will be (hopefully) short. The rheumatologist already got pre-clearance from my insurance for Enbril, so I "just" need her to call me back with instructions on a tapering-off plan for the steroids (before I bite someone), and an appointment to get started on the RA meds.

If I'm reading things right, it will mean a shot a week for life. Given how utterly terrifying things were getting for a while, before they put me on steroids to calm down the symptoms, I will take that inconvenience and expense over the alternative. If they ever clear me for at-home administration of the shots, I suspect I am going to have to impose on poor Adam, who has been a godsend through all of this, to give me the shots, at least at first. Needles and I don't get along.

Anyway, enough babble for now. I'm going to see if this actually posts to Facebook automagically or not....

Pretty much every online game has at least one non-player character (NPC) that folks just love to hate.

Mine, which happens to correspond with the opinion of many of the members of the EQ2 tradeskill community, is a little boy called Qho Augren.

It isn't that he's rude, or mean, or even very bratty. To be fair, I have to give him points for not worrying his parents by wandering off on his own to obtain all the harvesting samples that he wants.  (Though the fact that he spends all his time in that one little pond, often totally submerged does make one wonder if his parents were aquatic creatures of some sort, as opposed to human!)

However, no matter how politely he asks, by the third time he has sent you out to harvest an ever-growing list of items for A Gathering Obsession, you're likely ready to scream at him. By the time you have found the last bit of meat needed from Rivervale, you may be tearing your hair out. When you finally earn your cloak, you may have pondered several wonderful means of murdering him. 

 Annnnndd, if you're like a certain stubborn redhead, you have likely had to go through the entire questline, several times, and you now flinch every time someone mentions going out to find their "Qho-ta" for Qho.

We just love to hate him, and since he's just a little pixelated kid in an online game, our hate is a relatively safe and silly thing.

What does this have to do with asking about what to do with him?

 SOE had some of their employees decorate game-themed Mighty Mugg characters for the 2010 SOE Fan Faire, to be sold in the silent auction.  Emily "Domino" Taylor, crafting dev extraordinaire, not only did a wonderful job of creating Qho, but she blogged about the process.

He's now sitting on my kitchen table, along with the receipt from the silent auction, as I ponder his fate.

Rijacki and I both thought of turning him into a voodoo doll if we won him. Calthine from Zam had several suggestions involving firearms. I've also considered just hanging him from a "noose" in my home office.

I'd really rather not damage the replica, especially given the work that went into him, so I'm open to suggestions that will show how many of us feel about Qho while still respecting the work that Emily put into the replica.  Depending on where you're reading this, feel free to respond on my personal blog, on facebook, or on my forums with your suggestions for the little brat. 

Those who know me from long ago remember one me, who used to be able to laugh and joke a lot. "Bouncy" was one word used a lot. "Cute" was another, though some who used it made it sound more like a curse than a compliment. 

Those who met me after the fibromyalgia really started getting bad knew a quieter, moodier me, prone to "wearing my shoulders as earrings" as I'd hunch from the constant pain, etc.  It got so bad that physically I became a virtual hermit, only really getting out of the house for the chiropractor, the grocery store and such.  My 2005 Celica is not yet at the 5000 mile mark for mileage, if that gives you any ideas of how bad it had gotten!  (Meanwhile, I've put wayyyyy more "miles" on my keyboard than most folks do, during that time, escaping to the distractions of online worlds as a form of pain-blocking.)

 Starting the Savella helped in the fall, but once I settled into a new baseline for the pain, and winter, such as it is, hit here, it was almost back to the same-old same-old. I'll candidly admit, after the fact, that I was getting close to being clinically depressed, due to so many years of constant, never-ending pain.

 I'm still in pain. There has been no miracle cure.  There is, however, a new me.

 Sort of.

More like the old me, starting to return after over a decade of hibernation. The process will be a slow one, but the first steps were very noticeable.

I started up gentle Hatha yoga 3 times a week, starting at the beginning of June. Last week, I went mall-crawling for the first time all year, then went back and got a body wave (perm) the next day. Next week, I get a professional hair coloring done, to more properly cover up the grey.

And I'm doing it all with a huge smile on my face.  I'm reclaiming the old me one gentle stretch at a time.

The next several weeks are going to be busy, with EQ2's Tinkerfest, the SOE Block Party, the SOE Fan Faire in Vegas, etc., but please, folks, help nudge me about mid-August if I've not started up a blog series. There are many out there with whom I want to share several fibro-related notes that I learned the hard way regarding massage, chiropractic, yoga, and even some food sensitivities that may help my fibrofriends out.  Old me or new me, I'm still prone to procrastinating and getting side-tracked, and if I'm getting enough nudges, I may get enough "oomph" to get them written for you!

Into every life, some quakes must fall ... at least for those of us living in Southern California!  We're actually due for a lot of quakes in the coming year, apparently because of the bigger one back in April.

How many of us know what to do during a big earthquake, though?  I'll be the first to admit that I was clueless until someone posted the following link a few months back, so I'd like to share the knowledge around as things start rattling a bit more around here.  This comes from the U.S. Federal Emergency Management Agency (FEMA): What to Do During an Earthquake  For those of you living in the SoCal area, the following site can also be a handy one to have bookmarked: California/Nevada Region Earthquakes

Do you know how hard it is to stay in a "blah" mood, when you've got a tiny hummingbird perching on your finger?  For me, the answer is "impossible".

I may be fighting a losing battle with the flu, and feeling the worst, physically, that I have since starting on the Savella (bad enough that I canceled my chiropractor's appointment today, as I didn't feel up to driving, nor did I want to give them whatever it is that I have).  I may want to just crawl under the covers and sleep for a week or two. I may even feel bad enough to go to bed right after dinner, instead of my normal midnight-ish.

I just can't be too grumbly about how I feel, though, due to thumb-sized little bundles of jewel-bright feathers.

It has been cool enough now, that the hummingbird population in the area is lessened. Many of the birds have headed down to Mexico for a couple months of warmer weather, and after the temperatures on waking up a couple different m*rnings, no matter how warm it got later in the day, I can't say as I blame them! 

"Lessened" however, is a relative term, and there were a dozen birds visible, and more that were audible, when I shambled out to refill the feeders just now. Although it means extra walking, when they're in that sort of a feeding frenzy, I bring the feeders in one-by-one, placing a filled one out before grabbing another of the three feeders to refill. It is a bit more reassuring to the territorial little flitterbidgets when all of the feeders don't disappear at once.

When I brought the third feeder back out, some of the little birds did not fly away as I approached, but perched at the other two feeders an arm's-length away, pigging out. This made it the perfect time to play human statue and see if I could get one to land on my finger.

The answer was a resounding yes, within about 15 seconds of me placing my finger in front of a feeding port on the nearest feeder. It wasn't that the other ports were all busy (they weren't), or that they'd been totally out of food and starving (one of the feeders still had nectar in it that I dumped out and replaced when I refilled the feeders), it was simply that he wanted to be at that specific spot.

He was glorious. A lovely metallic green back and wings, a cap and throat that looked black from some angles, and an absolutely gorgeous metallic fuschia from other angles. Bold as can be, perched on my finger while chugging away at the nectar.

He was soon replaced by a dainty little green female, then another male with the patchier neck plumage of a young adult.

I likely could have had more land, had my body been able to cope with standing statue-still for much longer, but even those brief little visitations were enough to brighten my mood.

As "winter" approaches here in Southern California, we're still in a rather nasty drought. Mandatory water conservation is in effect here in Vista, which mostly involves what you can and cannot do with your yard and such.  However, water conservation shouldn't end there for anyone living in a highly populated area, as more and more cities struggle simply for suitable drinking water for everyone, much less irrigation water.

 I'd like to share one of my preferred ways to help, since it allows me to keep alive the much-loved family rose, even with reduced sprinkling throughout the week. It also capitalizes on the fact that I have hummingbird feeders to keep clean, if I don't want hummingbirds killed off by nasty bacteria.

 Rinse water.

Such a simple little thing, but something most of us take for granted.  I now keep a large metal bowl in one kitchen sink, and rinse my hands, various dishes, etc into the bowl. As it fills, I dump the water from it into an easily-filled wide-mouthed pitcher, then dump the water onto the most needy of my outdoor plants and shrubs.  Given how frequently I have to clean and refill hummingbird feeders during the week, this is saving many gallons of water a week.

The other one that I do is more "work", but I try to be good about it. I keep another wide-mouthed pitcher (the wide-mouth makes it easier for filling, and easier means I am more likely to be good about doing it) in the shower.  When I am waiting for the shower water to suitably warm up, I fill the pitcher with the running water. Dumping this out on the plants gets the water back into environment without it having to go through the costly and time-consuming sewage treatment plants, etc.  Yes, it takes extra effort on my part, lugging it from the upstairs master bathroom to the outdoors, but, again, it can be a savings of several gallons of water a week, which makes it worth it in my book!

For those wanting more water-saving tips, sites such as bewaterwise.com are fabulous resources for helpful hints and tricks. (It also gives you a visual of how badly off we are for water as the years of droughts continue in the area.)

---

For those wondering how I am doing on the health front, the results from the Savella are still good.  Yep, I'm still in pain. Yep, I still have flareups. In both cases, however, they are definitely lessened, which makes them more bearable. I may be able to do a bit more gentle exercise and the like, which should also help in the long run.

As an example of how much it helped, my father-in-law was just here visiting for a week, and in the space of 4 days, we went to both the San Diego Wild Animal Park and Birch Aquarium. That may not seem like a lot on the sightseeing side of things, but it is more than I had been able to pull off in a few years without ending up flat on my back afterwards for a day.  Yayy for progress!

... the hummingbirds are still lively at the feeders, and the family rose is still blooming up a storm.  What a lovely day!

I have now been on Savella for 2-1/2 weeks, and I've gone from "cautiously optimistic" to downright "happy". My mood is definitely better than it has been for months, and the pain, while still there, is lower than it has been since spring. There is still plenty of room for improvement, mind you, especially on the pain front, but every little bit helps when you're dealing with a chronic illness that saps your energy and mood as badly as fibromyalgia does.

The blood pressure worries seem too be a non-issue, as my blood pressure is back in the normal range at long last. (This sort of helps prove that a chunk of my blood pressure issues are from the constant fibro pain.)  126/87 is the best I've seen for a while on the blood pressure front, and if I can keep it down, perhaps I can reduce the amount of blood pressure medication that I'm on.

 The difference in mood and energy is very visible.

I regularly hit up the Alberston's deli for roast beast and meunster cheese. Often, I shamble through the store - eyes a bit glazed, possibly limping a tad if my hip is acting up, and so forth. Today, I practically bounced up to the counter, and was pleased to see one of the "regular" deli staff waiting to serve me. Somewhere in the depths of my often-fuzzy memory, I seemed to remember that his wife also suffers from fibro, and I was eager to share the recommendation. Sure enough, she suffers from lyme disease and fibro, so I suggested that she look into Savella.  He commented on how much better I seemed, compared to my usual, and was not only glad to get the medication name, but also my doctor's name. (They're new enough to the area that she hasn't settled in with a good doctor for the fibro, and I'm pretty pleased with Dr. Shali.)

Time will tell if this will continue to help, but after this many years of coping, it is so very nice to have hope once again.  I'm calling my doctor right now to update her and ask for her to prescribe this for me for the long run!

For those who have been following me on facebook for a while, you may already know some of this. For those who are just catching up with me now, as I slowly get the blog reformatted and resurrected, here's a bit of a recap.

 I've been trying since mid-June to get a prescription for Savella, which became the third drug approved by the U.S. FDA for the treatment of fibromyalgia. 

This year has been the worst year yet on the pain front, and I'm starting to have to really struggle to avoid slipping into depression.  I know I have a lot of things to be grateful for, and that I'm in far better shape on some fronts than many who suffer from fibro (including many friends and relatives), but as my pain levels continue to peak without respite, and my energy levels and motivation hit what seem to be all-time lows, it is getting harder and harder to keep my moods on anything remotely resembling an even keel.

Naturally, the added weepiness and moodiness gets me irked at myself, as I remind myself that I am one of the "lucky" ones among the fibro community (no need for a fulltime job, no kids to care for, etc). Getting irked at myself, of course, triggers more moodiness, and ... you get the picture.

Anyway, I've been stubborn for years about taking as few meds as possible and "just dealing with the pain". That went right out the window this year, however, and I'm now taking darvocet daily, just to get through the day (and to get more than 4 hours of pain-filled restless sleep a night!)  I need to at least try something to dig me out of this accelerating downward spiral. Even if it doesn't work anywhere near as well as hoped, or if I find I can't tolerate it (like my eldest sister, Annette), I will feel like I've made some progress in trying to get this illness back under control.  (Attitude makes a huge difference when coping with chronic pain!)

So, I contacted my doctor's office for a consultation in mid-June, and finally got in to see her in mid-July.  I was better-informed about Savella than she was, since it had only been on the market for a couple months. I mentioned that, other than a slight chance to raise blood pressure, it was looking far more promising than the other 2 medications that had been approved.

Oops.

You see, my blood pressure is a tad high. Constant pain can elevate it. Mood can elevate it. When you get pain and mood in a nasty spiral, well, even on blood pressure meds, things get a bit high. So, she decided I needed to take a second dose of my bp meds each day for a month, while she went and did more research on Savella.

Back I went to her office in August, after one rescheduling on the doctor's end, hot on the heels of losing Nutmeg.  Yeah, not a happy blood pressure time.

My bp was even higher than it had been the month before, even with doubling the dosage of my bp meds. Naturally, she was a bit unhappy about this, and said that, while she really liked what her research had turned up on Savella, she didn't want to start me on anything new until my blood pressure was under control.  She started me on a new bp medicine (while continuing to double-dose on the old one) and scheduled another followup for September. She'd also wanted me on a diuretic, but the one she wanted to prescribe had sulfa in it, which is a no-go for me.

September has been a tad busy for me with lots and lots of EQ2 upcoming content to test and write about for my site.  Busy, busy, busy, with my brain trying to leak out my ears due to the sheer volume of it all. Not the best time to try to cut down on my stress so my blood pressure is sane, but I was managing ok.

One hour before my recheck appointment today, the dr's office called and rescheduled ... for the same day next week when the content in EQ2 that has been making me so busy is due to be published to the game servers, and I'm due to be running about in-game verifying last-minute changes and updating the site.

Oh yeah, my blood pressure will be nice and low then.  {sarcasm}

What's next?  Another delay until October while she tries me on some different blood pressure med?  November?

The pain is getting worse as the months pass, which, I suspect, is counterbalancing any good that the bp meds may be doing for me.  I can't see much hope of that changing at this rate.

Meh.

It wasn't a quiet passing, as such things go, but Nutmeg ("Meggie") had never been what one would consider a quiet cat. The only time she was really quiet, was when she was sleeping, and she most definitely did not want to go into that long, endless sleep, regardless of how ready her body was for it.

 I got Nutmeg as a kitten 18 years ago, while living in Syracuse, and she was always a bit off-center. Mostly black, with flecks and patches of orange and cream, she reminded me of a bowl of spices that had been only partially mixed together -- including a long dollop of cream running lopsidedly down her nose. She wasn't what one would consider a beautiful cat, but rather one full of lively personality.

 She was also extremely "mouthy", and was pretty impartial about sharing her opinion with anyone and everyone, often at maximum volume. I used to joke that she averaged about 45 ypm (yowls per minute) whenever I had to drive her to the vet, and the vet's office could always tell which cat I was bringing in for a visit, by the noise (or lack thereof, in Natasha's case) coming from the carrier as soon as I walked in the door.

During the last several months, I suspect she was actually going hard of hearing, on top of everything else. The poor old gal would sometimes "shout" at us, throwing her entire body into her chatter, as if, because she couldn't hear it properly, we wouldn't either, unless she yelled.

As usually happens with any pet that has been a part of your life for any length of time, she wasn't just a pet, she was "family".

This is something I rarely took for granted once I was "retired" and not getting out of the house much anymore. Having pets to care for meant that, regardless of how horrid I felt on waking up, I actually got up and got moving while it was still "morning" out. If my conscience didn't get me out of bed on the worst mornings, then there was generally a cat in my face (or bouncing on my bladder, or licking my fingers, etc.) telling me it was time to get up, feed them, and attempt to become human.  When the pain or exhaustion was bad enough, and I felt like napping, there was generally a cat napping with me ... just to make sure nothing other than them was going to disturb my sleep.  (I swear, Meggie was watching pro wrestling with my hubby, Adam, on the sly, and then practicing various wrestling pins on me when I tried to nap, some days.)  There were antics to make me laugh when I was feeling down, feline demands that got me up and moving, instead of sitting in my computer chair for too many hours on end.

Of course, there was also a lot of noise, especially with Meggie. While I can be pretty noise-sensitive at times, her "talk", and my habit of talking back to her had some unexpected benefits for me, and actually helped my headaches.  Yep, you read that right.  Who'd have thought that talking back to a cat would help decrease headaches, eh? 

 Like most people, I clench my jaw when in pain, and since I am pretty much always in pain, you can guess what that does to my jaw (and my neck, and my skull, as all sorts of muscles follow suit and clench along with my jaw). Since most of my "talking" is via my fingers on the computer, as well as random chats with Adam when he's home, that leaves many hours each weekday where my jaw would be pretty much locked closed, other than for food, drink ... and chatting with the cats.

 Trust me, my sisters gave me the nickname of "motormouth" when I was a kid, and Meggie seemed determined to make sure I didn't totally lose the gift for gab as an adult. She would play "shark" around my computer chair, talking up a storm, coaxing me into talking back (and into "spanking" her, and/or holding down a brush, pen, book, etc for her to rub against, etc.).

So it was a very sad thing to see her get less chatty, less active, as her kidneys continued to fail.  She still loved to chat if I sought her out in her resting place, but it was me seeking her out, instead of the other way around. It finally hit the point where the subcutaneous fluids and other tlc weren't enough, and her body stopped producing red blood cells as well. At best, extra measures at that point would have only prolonged her life by a few weeks, if we were lucky, while making her miserable with all the medicating, etc.

A week ago today, I brought her into the vetrinarian's office for the last time. Her talking was muted, but still present and she nuzzled happily against her favorite brush as we waited for the vet, a man who had been seeing and treating her for the last 10 years, and well knew her personality and foibles.

Her body was most definitely ready to give up, but her spirit turned stubborn once again. (She took after me in stubbornness at times!) The tranquilizer injection, meant to put her gently to sleep so she would feel no pain or panic during the lethal injection that was to follow, only made her more stubborn.  During the 5 or so minutes that they left me alone with her while it was taking effect, she literally braced her paws on the table, fighting to stay awake and alert for those last few moments with me. It was heartbreaking, but so very typical of Nutmeg!

Finally, however, she couldn't out-stubborn the effect of the sedative on her overtaxed body, and she drifted quietly to sleep, so that they could give her the final injection.

I stayed with her until the very end, giving her gentle pets and brushes as I quietly thanked her for 18 years of companionship, love, and much loud "conversation".

Thank you, my "grumpy granny", for those many long years.  You will be missed, old gal.

A few months ago, all our websites hosted with Racknine went kablooey, and while the EQ and EQ2 ones were brought back rapidly, my personal blog was not so fortunate. Once the server was finally kickstarted (after goodness knows how many requests), Serendipity turned out to be pretty much toast. Adam has reinstalled the blog software (thanks hon!), and it will take me a bit to get all the plugins reset, the blog configured, etc.  My energy levels are pretty low right now, and there are several things higher on the "should do as energy permits" list.  I'll get to this in Auguest, really!