Showing posts with label Sjogren's Syndrome. Show all posts
Showing posts with label Sjogren's Syndrome. Show all posts

Tuesday, August 13, 2013

Turning 40

I'm turning 40. Forty. Four zero. This is happening in a few weeks. I did the maths the other day but screwed it up, so will just say whenever it's 5:13 PDT on the 29th, I'll officially celebrate my 40th year and start my 41st year. I am old.

I have a lot of thoughts about this, but will just mention a few of them because ain't nobody got time for rambling. I certainly have other plans anyway. (My Sims 3 addiction needs some nurturing.)

Salon has an article about my generation going through a midlife crisis here. I read it and was like, huh. I don't feel middle aged. I certainly don't look it since I keep getting carded. I think I may look like I'm up to 26 or 28 now, if I'm lucky. I'm pretty sure I'm not in a midlife crisis, although on account of the turning 40 thing, I am examining my life as lived so far and weighing it with things I'd still like to accomplish. Long story short, I've been through an awful lot, and the best is yet to come!

You can stop reading now if you want to skip the details of all of that. Just sayin' since we're all pressed for time all of the time. Seems like that, anyway.

The article mentions that us Gen Xers don't really hit a wall of midlife crisis - we have crises throughout. I guess I can see that, although I've had crises throughout my life so far, not just this allegedly middle part. Let's see.... bad stresses and good stresses would be:

- my mom died when I was barely 15
- I had my first broken engagement at 20
- got married at 21
- got divorced at 22
- was diagnosed with endometriosis at 24
- got put on 2 meds for familial hypertension (thanks dad) when I was 25
- had my second broken engagement at 25
- remarried at 28
- was diagnosed with costochondritis and fibromyalgia at 28
- was tentatively diagnosed (not definitively via biopsy) with IgA nephritis before an actual factual diagnosis of stage 2A grade 3 triple negative breast cancer at age 30 (and I don't have either BRCA mutation!)
- my dad died when I was 32
- was diagnosed with gastritis, gastroparesis, an H. pylori infection (NOT FUN AND THE CURE WAS HORRIBLE), and Sjogren's Syndrome at 36
- had to quit working completely at 37
- went through 2 rounds of SSDI rejections (even though Sjogren's is on the list of "you're disabled if you have this because it sucks that much") but then was able to start working full time again (thanks to Deplin, Savella, and modafinil) at 38
- endured Very Interesting Job Things and family issues throughout all of this

I guess those would qualify as at least minor crises, huh?

Me unedited after a really great 80 minute
table massage this evening. So happy!!
At 39, there's still some weirdness going on, mainly with some eyesight issues but I get a recheck in November. I'm also going to ask my rheumatologist (assuming I remember next month) to check me for dermatomyositis and hypermobility syndrome, since that combo would explain both some skin issues plus my continually occasional rib subluxations (from the combo of muscle stiffness and loose joints).

You know, even with all of that, I still look awesome and way younger than my chronological age, or so everyone keeps telling me. Booyah!! I am pretty resigned to being carded for the rest of my life. I guess I don't look like I'm about 40 in that pic of me from tonight, but Awesome Massage Therapist kinda rubbed all of the makeup out of my face, so whatever. I really need to make myself get massages more often. I got in on the monthly Massage Envy prepaid deal the other year before the prices went up, so I really should keep that going. Guess I'll have to discipline myself with relaxation.

The Salon article mentions that "Xers are still in full construction mode" and that's really true. Hubby and I are consumed with our separate artistic interests (mostly graphite drawing for him though he's been dabbling in pastels and inks and other stuff; photography and writing for me). We're also unlike a lot of people our age in that we're happy to intentionally live in a nice apartment instead of a house because 1) we'd rather let someone else take care of home maintenance issues so we can do what we want to do, 2) property taxes are crazy stupid high here, and 3) it'd be nice to live outside of hot sweltering Texas one of these years so portability for the win! We also have no children, pets, or plants to worry about, although we've talked about caring for some sort of critter(s), like maybe a cat (Abyssinian for him, Nebelung for me) or dog (Scottie for him, Samoyed for me in a way less hot environment), or bunny, or guinea pigs (he misses his), or iguana (I miss mine!) or bearded dragons (I miss those too).

Hot flashing in Sept 2010. I was having a great
time with friends but this was NOT FUN.
It's nice being pretty unlimited with home things and critters not tying us down, but my health issues limit me more than I'd like. It's not really as bad as it used to be though, mainly as I'm much better at pacing myself these days. I can push myself at 75% of my previous full steam because I'm stubborn, plus the new med combo has helped me to work a 40 hour week for over a year now. I wasn't able to do that for the five years prior. I'm also really ecstatic that I haven't hot flashed freaky bad in a long while, thanks to realizing that the BCP I took non-stop for endometriosis was putting me into early menopause which got increasingly frighteningly worse each year. Seriously, looking at some old pics of me drenched in my own sweat in not hot weather is such a bummer, especially with remembering how drained and continually worn out I was, but I'm so glad I'm past that crappiness!! Yay for better living through chemistry!!

Full construction mode now is making me so happy since these days I'm surrounded by even more artistic people. What am I constructing? Eh, several books, a screenplay, eventually some music but definitely some photoey things soon, and who knows what else. You'll just have to pay attention and see. In the meantime, you can check out the awesome nerditry I help with via SCNS Live, now powered by Cinelinx!

Tuesday, May 29, 2012

Dammit, Linsanity should refer to ME!!!

NOTE: This is gonna take a while, so you might want to get some snacks.

Seriously, go get some snacks. I'm rambly in this post.

NOTE TWO: This also gets a bit TMI, so if you're squeamish, just skip the paragraph that starts with me rambling about being on Cipro. Or stop with the snacks then. You're welcome.

Why that title? Because within the last month and a half, I have not only lived more non-stop than I have in 10+ years, but have also been *able* to live more non-stop than I have in 10+ years.

See, I've dealt with fibromyalgia and endometriosis for 10+ years now, plus have been married (to the same guy!) for 10+ years, and life is greatly improved back to back in the day thanks to new meds and supplements I won't bore to list (except to say praise Shiva for NAC plus the serious cost-effectiveness of generic Deplin and Provigil).

So guess what's happened in the last month and a half?

Let's see... started new awesome job a week and a half before their centennial annual meeting (and fiscal year end, and if that's as stressed out as everyone gets at once then I am hella set as soon as life simmers down)....

Wait a sec. I should probably mention that I haven't been able to work a 40 hour work week since two jobs ago, since before I went to part-time in May 2007. (Yay for better living through chemistry!) I should probably also mention my fifth interview for my new job (phone, panel, boss, HR, boss's boss) started with getting to know some lovely women in a kinda cramped and stuffy restroom over 45 minutes while waiting for some tornadoes to pass overhead. (Everyone who was in there that I saw on my first day even remembered me when I was introduced around the building!)

I've also had the usual May Routine Doctor Appointment Slam-o-rama, except this has been freakin' nutso, even for me. Tomorrow will make the 11th appt in 4.5 weeks. This doesn't sound so bad, except that since I'm new, I can't take any accrued time off until mid-October (my six-month mark), and I'm getting to make up all the time I'm missing by staying late most days. (My new boss is so generously awesome with that, and with letting me adjust my hours to 8:30-5:30 because the stupid Sjogren's/fibro fatigue is so unpredictable and it's so much worse in hot weather and it's been 94ish for some days now and I get more puky than usual since I'm on Cipro... woo, tangent.)

Imagine, if you will, already trying-to-stay-not-so-fatigued me working a full work week, trying to keep working a 5 hr per week part-time job (and having to give that up, boo!), and seeing my primary care PA and rheumatologist and dermatologist and eye doctor and boob surgeon plus seeing some wonderful guys who work me with Active Release Techniques and sports therapy exercises in a non-woo evidence-based chiropractor office many many many many many times for the usual ribs popping out from new desk ergonomics and running way too non-stop in life. With a few evening massage appointments thrown in to help with the A.R.T. and chiro stuff. All within four weeks. While working extra to make up time. And learning LOTS of things on the job and making forms and tools to help me learn things. And I have eye doctor part two tomorrow.

Yeah, Linsanity should DEFINITELY apply to me more than that tall asian guy, dammit. One of my friends commented that it sounded like I was being chewed up like a dead hooker in a wood chipper. I thought this was pretty apt, except it'd have to be after being sliced and diced by my pimp. For reals.

Oh, and last week a relative in my immediate extended family passed away and I wasn't able to go to the funeral or graveside. I'd only seen him twice over the last 6-7 years but I have some great memories of him from when I was a wee bohemian, and he's very missed. I also had to officially give up (for now, dammit) my part-time job full of awesomeness that I'd missed doing for 6 years. Not only am I once again out in the liturgical cold, but I don't get my weekly dosage of awesome gayness. (There is fabulous gay, and there is awesome gay. I'm so friggin' sad about this, y'all.) Not only that, but working there helped me to realize that it was still possible for me to work and be productive in spite of craptastic health crap, and that did wonders with boosting my self-esteem and morale while faghagging. (There is also a definite probability that in the near future, previously kinda mentioned immediate family will meet up with other awesome gay in a business venture, so that's something I'm looking forward to when I can think about having energy again.)

Did I mention that I was in the presence of The Surgeon General of the United States on the same day I was in the presence of The Bloggess? Yeah, that was flippin' sweet! I'll have pics up someday. Check back around Yule. I might have something up then.

Oh yeah, breast cancer recurrence scare. I'm 8.5 years boob cancer free, and the type I had was stage IIA T2 N0 M0 grade 3 triple-negative. The last .5 year has been interesting with surprise spontaneous unilateral discharge (natually on my affected side) and ductogram and Aurora MRI, and let me tell you how amazing it is to talk with health insurance people when it takes 10 referrals before they, ahem, you find a place that does the special MRI that's needed, which was the place your surgeon's office tried to recommend in the first damn place the week prior but they would only talk with you instead of your physician's office. Also, let me share how spectacular it is when 15 different sets of customer service agents in various departments (Claims, I'm looking at you real hard) can't find your certificates of coverage that have been on file for more than a minute. All of these people are special in a really special way. (Note to self: make sure those idiots paid my pcp from that appt last May.)

(And that's special, not special. As in the state of being distinct, not the designation of a species.)

(Yes, my brain is a little tired. It's the feeling-like-crap from Cipro and adjusting pill-up times to avoid taking it with anything calcium/magnesium/aluminum. I couldn't even soak in epsom salts tonight because of my near-shortsightedness.)

Oh yeah, I'm on Cipro (TMI alert; skip to the next paragraph unless you like reading about bodily fluids) because the lump under my arm that I'd noticed that was alarmingly adjacent to a boob cancer scar almost two inches long thankfully turned out to be a sebaceous cyst (which is now an inch long but finally disappearing, yay). And because my boob discharge was alarmingly green after months of being strawish-clear. And because I have my first UTI in a very long while and it suuuuuuuucks. But finally, the Cipro is working because I'm back to strawish-clear boob ooze and starting to feel better while incredibly puky. I was quite pleased to hear from my cancer surgeon that (thanks to my photography) I'd documented the best case scenario for non-standard boob juicery, with it being green and coming out of multiple ducts (like 8 or 9 at the same time, this one time, which was freaky, and I know this because I was reading while sitting naked under a ceiling fan after a shower and noticed the dried evidence when I next saw myself in a mirror).

Oh, and I am apparently aging faster than I should, since my eyes are doing things that should be starting a few years from now, and I'm apparently in perimenopause now with all this gunk, so yay. I'm really flippin' old for 38. I'll be 39 in late August. And 40 next year. OMG 40. Next year. Hubby just turned 37. (Yes, in a row.) Last week. I'm old. Okay, happy thoughts needed stat so here's some nerd love.

In really happy news, I'm so pleased (and many many other adjectives) about season 3 of The Variants. (OMG dudes, they have a Wikipedia page! Someone should add Joe as a producer sometime. Just sayin'.) Hubby and I helped make season 3 happen via Kickstarter! I'm also excited about the upcoming Stella B. and the Busted League and really happy to see The Untitled Super Cool Nerd Show on air. Dallas totally rules the nerd landscape, you people. I'd go on about Dallas Comic Con and other stuff but nah. I'm off to play Sims 3 and calm my mind a little, since my brain is tired. The game I've been playing for the last month or so is in Hidden Springs, and the local unicorn had a habit of showing up at my sims' home until it got adopted, and one time when one sim was fishing, the other came by to hang out since the unicorn was there, and they both got blessed by the unicorn, and they were already engaged so they decided to have a private wedding, and so now I have two very happily married (and hot) lesbian sims with two dogs and a stray cat that adopted them plus the unicorn which was totally cool with joining the household. My Sims are honeyadventurooning in France right now. Gotta keep them away from that damn cat. I swear, that cat is so cute that they play with it instead of going to sleep or eating or whatever. Stupid cuteness.

You know, I'm not even going to bother reading over this and editing anything. 'Cos I'm Linsane, y'all.

Okay, I changed my mind and added a few links, and while proofreading my husband asked me if I was on a Mormon site.

Whaa?

Because he saw the flowers, and he thinks that Mormon websites are apparently full of flowers. Excuse me, *I* took that photo in the background (and he knows this and he knows I'm not Mormon), and it's all watery reflection of trees and non-blossoming lotus paddery so Not Full Of Flowers. I told him he was mean. Because I'm cranky. And need to be playing Sims 3 for 30 minutes before bedtime. And need to be taking my evening meds with a nom glass of Silk Dark Chocolate Almond Milk because screw Cipro, it's time for calcium. Mmm.... meds.

Also, please don't take that as a slam against Mormons. I've had Mormon friends since high school plus we have a Book of Mormon somewhere on one of our bookshelves (along with a Qur'an, the Jefferson Bible, the Bhagavad Gita, and other sacred scribblings), so don't start any shit. Thanks.

Monday, April 16, 2012

PSA: Go see your dentist regularly. That is all.

This was not hurting me. At all. For almost a month.
For reals.
So yeah, imagine my surprise when I saw this image taken with a pen camera....

See, I'd chomped part of my tooth off a few weeks before I saw this, but I wasn't sure how bad it was because it didn't hurt, and I could feel my tooth was still there. Granted, it felt a little weird, but I chalked it up to my new nightguard. As in, my THIRD hard acrylic nightguard, because it took me like two years to chew through the first one and four years to chew through the second one, if memory serves me correctly. Yeah, I brux. Horribly. Badly enough to actually break this tooth, apparently.

My dentist is The Best Dentist Ever because he's been the only one to offer me nitrous oxide and it so helps me not sever fingers while someone's working in my mouth. All my life I've had dental issues and have been stressed with feeling more pressure and pain than most people. I now know that's due to fibromyalgia (pain processing disorder of the CNS last time I checked), and I've also learned that I inherited mom's "bad teeth" because she almost certainly also had Sjogren's Syndrome. I really did not realize how much saliva I was NOT producing until I took a Numoisyn lozenge to help with that, and holy crap, you people all have way too much goop in your mouths! Yeah, I'd rather have dry mouth and get dental cleanings every 3-4 months than get used to saliva, thanks.

My hygenist commented that since my med wonkiness stabilized the other year when Plaquenil was added to my regimen, my gums have looked a lot healthier. Shibby! I recently went off Cymbalta to try Savella (which is helping my fatigue but making me feel more pain and muscle tightness, but I love it because I can actually get enough decent sleep to function during a day! woo, tangent). The Savella seems to make my gums bleed more since they bleed sometimes when I floss and they bled more during the cleaning. Interesting how med changes change more things than one would think. Anyway, also thanks to the Savella, that feeling more pain and muscle tightness was enhanced by the tooth decay being so close to the root. This caused me to be extra thankful for the extra nitrous I got during the cleaning and I guess during the filling done the following week. This also caused me to get a glass of anesthetic via four shots during the filling, since I felt things I should not have been feeling.

One of these cheeks is not like the other.
It was frustrating for both me and my dentist, mainly because I could feel the nerve and not much of anything else and because the anesthetic seemed to wear off faster. He was also working on the back side of the back tooth, and commented that if he went any further it'd be a tonsillectomy. (Note to self: stay thankful for tonsils.)

Long story short, I survived, and I called with an update the following day since he'd asked me to call. (Incidentally, when I first started seeing him a decade ago, he called me the day after any kind of dental work to make sure that I was okay, since I'd had awful dental experiences my whole life. This happened for like four years at least. Best Dentist Ever, I'm telling ya!)

I mentioned that my cheek had swollen a bit, and he was really sorry that there wasn't anything he could do except recommend an anti-inflammatory (yay Advil liquigels) and some heat. This pic is from three hours post dental trauma last Wednesday. The next pic is from Saturday, when I noticed some bruising in the shape of a thumb. It's almost Tuesday morning and the bruising is larger and about the size of my lips but vertical, and makeup doesn't completely cover it but eh, good enough. It'll disappear soon enough.

I really like the new shower curtain.
I really don't like the bruise or the
bathroom lighting but at least we
haven't exploded yet.
My back teeth on that side are kinda starting to hurt, but I don't feel like getting them checked just yet because my dentist's office is closed this week for spring vacation. I have the number of a more local DDS in case anything goes wonky while they're gone, but meh. Hopefully the tooth will heal up fine. It'd better heal up. It's on the edge between dying and living, so it'd better choose living because I'd rather not have to go through another root canal.

In other news, the wonky bathroom lighting is fixed... for now. There are 10 lights in the master bathroom (5 over each of 2 sinks) connected to a light switch that was tripping a GFCI outlet breaker gadget in the master bedroom. This was fixed, but it kept happening, so it got fixed again. I'm still wary of it popping but so far so good.

In other other news, I am waaaaaaay behind in photo work and website work. WAY behind. As in, summer 2013 looks good instead of having everything done by this summer. We're more unpacked than before but still have maybe 50 or so boxes full of books and DVDs and CDs and assorted papers and assorted crap, but things are dwindling surely yet slowly. Considering that essentially half the stuff from the old place has already gone to Goodwill and a local e-waste place, I'm a bit appalled that we still have so much stuff, but we'll be ready to move again before we're ready to move again. That'll be a nice change. :) That's also likely to not happen any time soon, and I'm good with that. I had a great first day at a new job today, and I'll blog more about that later, but have got to say I'm quite pleased that I have a 15 minute (one way) commute. I don't think I'll ever miss the stupid long 1-1.5 hour (one way) commutes I had years ago. Never. Again.

Tuesday, March 20, 2012

So many great things happening!!!

These are my flavors of interesting. Click to embiggen.
So many great things are happening, with meeting new people on Facebook and at the huge new AT&T store (more on that later) and having great phone interviews leading to in-person job interviewing for two hours later this week!! I figured I'd make one of these to illustrate myself to people getting to know me outside of random online jibba-jibba, whether they've known me for 20+ years or 2 days. It sums things up very nicely, really.

See, I'm very ottery and smiley and happy, as far as everyone who sees me is concerned. I also look way younger than I actually am (I'm turning 39 in a few months but apparently still look 28-32), so used the perfect young asian otter image from Das Otterhaus even though I'd be a North American River Otter (NARO) if I was an otter. However, on the inside I have the huge-eyed stare of a tarsier because I'm adjusting to new meds, amazed at the stupidity I see expressed on the internet, playing Sims 3 for 5 hours straight, etc.

I'd love to spend most of my days doing wildlife and nature photography (ideally for National Geographic, with incredible shots like Bruce Dale does there) and getting deep tissue massages, but I have to worry from hour to hour on what I'm able to do on any given day since I tend to overdo things when I'm feeling back to my old normal. I'm doing way better with pacing myself still and knowing my limits (the newish normal I've found after the Sjogren's Syndrome diagnosis), but the new meds have been helping me to feel outstanding when I'm awake, and I'm awake for entire days again, and this makes me SOHAPPYOMGCANYOUBELIEVETHIS?!?? (Side note: the Cymbalta withdrawal brain zaps are much better but today I'm dizzy and puky-feeling and need to crash because of crappy sleep from a 30 degree temperature drop. Also, sleep has sucked for the last two nights due to having to take down my blackout curtains due to some weak plaster and a wonky outlet breaker issue. Long stories. Don't ask.) Oh, and the pain cycle image is from this very well written page.

My typical attitude is me feeling all wise and awesome like an elephant while being enveloped by a non-normal living environment (health crap) yet trudging along as best as I can anyway. If the elephant in the photo can have fun daily swims, dammit, I can too, figuratively speaking. Or something. Crap it's almost 3pm and I need to eat lunch. (See? Overdoing it again, but stopping soon, really. Woo, tangent.) My ideal future for years has been opening up a fine art shop in New Mexico for selling my photography and hubby's art, but now it's grown more specific with wanting to do that plus farm Chimayo chiles in Chimayo (those chiles are so amazing, you guys, like omg, you guys). Having a little cafe there too would be pretty spiffy, since my brother-in-law has this chili spice blend that's incredible, and I need me more of that and more green Chimayo chile powder for cooking (it's seasonal and the Rancho de Chimayo is out of stock, per their website).

So. There it is. I'mma eat a really late lunch now then crash for a bit, and then organize music, and then come home and figure out more of how to work my new Samsung Galaxy Note, and then and then and then... Oh, Claude (my old iPhone 3GS, named after Claude Debussy) is death rattling very constantly now, with buzzing like the sound off/on switch is being flipped but with no one touching it and me staring at it from across a room. It's disconcerting. I need to put some of the contacts in Audrey (my new phone, named after Audrey Kawasaki) and download some apps and more, but not right now.

OH - and I had the best day yesterday with meeting up with an old friend, and eating freaking incredible food (both the ravioli and Guinness ice cream were like ambrosia, y'all), and visiting cute local shops, and basking while inhaling the smells of an old bookstore, and okay I'm really going now, damn.

Wednesday, December 7, 2011

These giraffes cannot run 35 mph (56 kph)

First, a shout out to Lemuel J. Lott, for fixing my iPhone 3GS voicemail. Whoop whoop! I should've asked if he could repair the power button on the phone since that's been extremely wonky lately, but there's a local place that can fix it for fairly cheap with a 15 minute in person turnaround time. I've got to go there soon.

Nothing screams out Korean sauna
with fire sudatorium and food court
like a family of giraffes, right?
I've been curious about this family of giraffes for a few years, and my curiosity was peaked this summer when I drove by at night and noticed the festive giraffery. I took a few minutes out of my commute to snap this amazing marketing tool, and visited the King Spa website just now. Holy crap, this place looks awesome on the inside! Not what I'd expected.

I'm not surprised that this is in the Asian Trade District, but giraffes? Maybe it's the African connection to the Pyramid room they have, or something. Someone who visited it had some good things to say about her experience there. I may have to try this soon. After we finish moving across town. (OMG I loathe packing.) I'm kinda meh when it comes to Korean food but I love that the menu offers the mighty and noble corn dog.

Hopefully by then I'll have scored a full-time jobby job that I can do. I've been worrying about this since I left my last job due to health issues (yay discovery of having Sjogren's Syndrome), but there are plenty of things out there that I'm totally able to do without wearing myself out. Basic admin stuff, for the most part. (EDIT:  I really want to work full time again but still worry about my body crapping out from whenever the uber-fatigue hits. I truly don't know if I'll be able to but I'd love to find out. I'd love to also see about working more hours part time. I am all for that right now. Bills don't pay themselves. I digress.)

Thing is, I'm WAY overqualified to be a basic admin, and I've had no luck with applications for that and similar positions. Even applications for jobs at the level I was at have gone mostly nowhere. I've had three in person interviews since March. Three. Total. The few very considerate rejection notes I've received were nice, but I'm really tired of being frustrated with not bringing in a decent income. Being on UI (at Tier One federal level now, yay) has helped, but gah I'm so not used to not working! At least I've had nine months to recuperate from pushing myself way too hard for several years, with having Sjogren's but not knowing I've had it.

Speaking of jobbing, I am very grateful to a friend of mine for hooking me up with a job helping him and others. It's basically organizing and filing sheet music (a LOT of sheet music for a LOT of instruments), but it is craziness how scattered everything has gotten due to being too busy to file from doing lots of liturgies (services, for you non-Catholics) so I'm glad to help, even if only for five hours a week. I'm even more glad to get paid extremely well for filing, but I do have a music education degree plus spent five years working in liturgy at the diocesan level so I'm sure some of that compensation is for my expertise. It's so wonderful being back in music again, even though I've had no experience with orchestral anything aside from coordinating brass musicians, listening to music, and observing my husband practicing the violin a few years ago. Yay for learning a new job skill!