Embracable Aberration

It's babymaking time again - month 3.

Which leads me to my in-laws. I would want my child to know them, of course... but... I'm... reluctant to let them have all that much influence. They just raise children much much differently. They leave their kids to their own devices and sorta ignore them from an early age. There's so sense of guidance or a notion that one is helping to build a happy successful adult.

And the state of my family... well... besides my cousins, I've got my mom and that's it. And that sorta concerns me. I was raised by lots of old people, who had patience and love and knowledge. I feel almost guilty knowing that my kid won't have that.

I mean... my kid also won't have raging lunatics for parents, and that mitigates a child's need for other attentions. But still, I got so much from the elders in my family.

I know a lot of people with kids who don't live near family, and their kids seem to be growing up well. I guess it's just that feeling that I want my child to have it all.

It would rock if this month's attempts are successful. I'll rock with it if not.

My mom asked me if Bob and I had considered an "end date" for trying to conceive. I don't really know. I'm 41. I'm working with my doctors, and I want the advice of a high risk ob/gyn. I'm trying to get into that clinic at UIC, but they only take appointments at the end of the month, for 2 months in advance.

I somehow fucked up my synthroid schedule. The problem is that I wake up early, take a pill, then go back to sleep, wake up again and forget I've taken it. I had been using a pill sorter, but I got out of the habit. When I count how many I should have until my next prescription, I'm short by a week. I can't believe I've doubled up that much...

and I'm worried it will mess up my next round of lab tests and the docs will think my dosage needs to be altered. I'll have to explain that no - I'm just a dumbass.

* * * * *

I have a few white streaks right in front of my hair. I tried using temporary color, but it didn't do a damned thing. I don't want to use permanent color for several reasons. First, I like my natural color and don't want to change my whole head, just the greys. Second, my hair is only chin length and I want to grow it out past my shoulders. If I start with the ammonia and peroxide now, the ends will get crispy and need lots of trimming and slow down the grow-out.

* * * * *

I've been a bum the entire time Bob's been at his parents'. He's got Monday and Tuesday off, so I figured we could get the cleaning and shopping done together. I feel a little guilty for getting absolutely nothing done, but I've been wiped out. I think I got too much sun on Friday and I'm paying for it.

yes, yes, I'm writing a lot today. I'm my own company, I suppose.

I made a comment to my mom that any child Bob and I might have would likely be quite smart. She said, "you don't know that" and started to talk about nature/nurture and randomness. But I cut her off and asked her if she could name one person on our Irish side that wasn't exceptionally smart. She stood there for a minute, ran a few dozen people through her head, and had to admit that every last one of them is brainy.

Maybe it is obnoxious of me to make such a statement, but I made it in the context of making a case for homeschooling until at least age 7 (with lots of out-of-home augmentation like art class, tae kwon do, swimming, etc). My thinking is that I'll know best how to help my own child make the best of their strengths and how to help them deal with their weaknesses. I also think that younger than 7 is too young to be away from home all day long all week long. I see that as state-funded babysitting... because I can't afford private schooling.

And then that got me thinking about how *I* was educated. My Irish side helped my mom out a lot when I was a baby/toddler and I spent a lot of time with my Grandmother and my Great-aunt, and with my mother, they are the ones who taught me to speak and read. Everything else I've learned how to do comes directly from those 2 things.

In second grade, I tested at college-level reading. My teachers were up-in-arms. My mother, and other family, acted like it was expected. I didn't even know about it until I stumbled onto the test tucked in a baby book, but I remember always being the only person in my reading group, and the teachers bringing in their own books for me to read. I devoured Twain, then Poe, then Dickens. When I was introduced to Shakespeare, I became obsessed. All before junior high.

Back to parenting... my daughter is similarly successful, and she went through the now traditional pre-school then kindergarten then primary school route. And now she's a senior in college, about to become a math teacher. But she had the benefit of extremely well-funded public schools in a very tony suburb.

Is it wrong of me to simply expect that I'd have another bright kid?

Also... regarding that Time Magazine cover and headline...

moms need to grow a pair, make their choices, and be truly cool with them. THEN, and ONLY then, will the infighting stop.

I had a natural childbirth. I breastfed until my child was almost three, and she slept with me for longer than that. In fact, she used to sleep on my back.

But I don't judge people who make other choices. My friends run the gamut, and most of them are excellent mothers. These choices are ancillary to the intent by which they are implemented. YO! MOMS! Are you trying your best? Then chill out, breathe deeply, and keep on loving your kids. Don't compare yourself, or your kids, to others. It's a waste of happiness.

Back from my mom's... she had a bad night's sleep, so we didn't hang out too long. I didn't sleep well, either, so I didn't mind that we only had a few hours together. She liked the lasagna and the earrings (which I purchased at the National Museum of Mexican Art).

We talked about family - she's on Facebook now, and I was catching her up on the news that I knew about. Many of her friends on there are actually her former in-laws... my (step) cousins. Even though it's been over 20 years since her divorce, they still think of her as their Aunt, and have loving feelings for her. That makes me happy - she was very good to each of them and I'm glad they remember it that way.

* * * * *

I'm debating whether or not to try and nap. It's already 3:30, and if I do crash hard I might not wake up until 7ish. Then I'm sorta messed up for bed time.

If Bob were coming home, I'd just stay up because his company would revive me. When he's at his parents' for the weekend, I just sorta float between awake and asleep without regard to the clock. This would be ok if my computer would stream Netflix, but it loses its shit when I try.

* * * * *

I'm someone who used to walk around with a lot of unresolved crap relating to past friendships and romances and sexcapades.

Most people don't make my radar unless they piss me off. So when I get attached to someone, I feel it deeply. For me, a person is either irrelevant, or someone I strongly admire/like/lust/etc.

So when things just sorta break off, as things do, I get left with the feelings but without the person. Even if things break off badly, or violently, or dramatically, I still have something in my center that remembers feeling something else.

Not any longer, thanks to the internet, Facebook, blogs, etc.

I'm one of those who *really* wants to know people's stories, and put them all in a pile and look at how yesterday led to today.

I moved around a lot as a kid, so I was often in the position of needing to step it up to make some friends (while simultaneously missing those friends I'd left). I always chose deliberately. I liked smart kind people, and their inevitable quirks made them even more enjoyable.

Now, as an adult and thanks to Facebook, I get to know all of them again and the coolest thing is - it's all such a boost! What a wonderful bounty they all are... well... the former friends, that is.

The former romances/sexcapades... I regret very little because I was usually the one in control, the one to end a relationship, the one to not return phone calls. But still, I'd had that lingering attachment. That's now nicely morphed into one of two options: a friendly familiarity and warm memories, or a complete satisfaction that I got away.

I like this... I have less anxiety about random things from the past. My childhood was bizarre, and I carry around a lot of weird stuff. A lot of that stuff gets tied into other memories, making them all sorta tainted and nauseating. But I find a lot of that is separating, and I can have the happy memories without getting assaulted by bad ones.

Part of it is visual. My friends are now all adults, and thanks to FB I know what they look like. So when I think of them, that's what I see first. Part of it is that they return the love and fond memories and wow - it's so warming to know someone cares after, sometimes, decades of no contact.

It's almost like I get to reframe my story, and remove the characters I don't like and populate it with the good people. I can have trips to the Little Red Schoolhouse, and getting jacked up on penny candy, and water balloon fights, and homecoming dances, and sex in parked cars without allowing anything ugly to surface. I don't mean denial.

I mean I've finally found what works for me when it comes to getting beyond and letting go.

15 years ago I walked away from my life, family, friends, everyone but Bob and his brother. Everything was a trigger, and nowhere and no one familiar was safe.

I don't think this is how it works for everyone, or maybe anyone but me. The truth is that growing up I was surrounded by really wonderful people, and a couple of fucked up ones. I'm slowly removing the fuckupedness, peeling it off.

All-in-all, right now life is the best I've ever had it. I've often written about how I didn't have the first clue about getting my head right. It's a really big deal that I can experience joy without an undercurrent of rage.

I only wanted to make a small pan of manicotti, and one small tub of ricotta (plus the egg, romano, parsley and mozzarella) ended up being WAY too much filling, so I made lasagna instead.

And I count the cooking as 2 big things because first there was the fresh sauce and then there was the handmade pasta. Whew. Now I'm tired.

There was enough pasta left over to make some fettucine, so that's what Bob gets for dinner.

I'm too pooped to clean up too much. I'll save that for Saturday. Tomorrow's big thing is the journey out to my mom's house. 2 buses and a train, and it drops me about a mile from her place (where she picks me up). Then, she usually drives me home but I think I'll just ask for a ride to the train, instead of making her come all the way into the city on a Friday night.

* * * * *

Got a call from the doc. The RA in my hands and feet is starting to cause minor deformations in my joints. If I wasn't trying to get pregnant, they'd recommend a biologic medication. But I'm not so sure I want to go on one of those just yet. The side effects are HORRIBLE and can be life-threatening. My feeling on it is that if I can manage the pain with ibuprofen, we're all good. I'd rather treat the stomach issues that result from too much ibuprofen than wind up with leukemia from Enbrel or Humira.

* * * * *

Bob will be gone all weekend. I'm kinda bummed about being a lonely hermit while he's gone. I'm looking up some art-related stuff that could be happening in Pilsen this weekend. I'd like to get hooked up with a group of people and throw my shoulder into a project larger than my own mind.

One of my former teachers directs plays on the deep south side. If he wasn't so far away, I'd offer myself up as a costume and set stylist, but the commute is over an hour each way.

I'm also looking into what I might be able to do with the Lion's Club. Now that I've experienced thyroid eye disease, I want to do *something* to help the people who don't have health coverage.

After grocery shopping today, I'm feeling more excited about cooking in general. Seeing, touching, smelling the produce put me in a happy mood.

* * * * *

I'm realizing I just have to pace myself, and only have one big thing to do per day.

Like today - I went shopping. I had to shower and dry my hair first. That's almost-but-not-quite 2 big things, so I'm done for the day. Frozen pizza for dinner.

The trick is really, truly being okay with this and sticking to it in the long term, especially now that the sun has arrived. I'm loaded up with medical appointments/procedures over the next month, so that means everything else that requires being outside is done at night or not at all.

(I'm hoping it's just a one time thing, but I lost a small fistful of hair in the shower this morning. If it starts happening again I think it will break me a bit.)

* * * * *

What are the politics behind Obama's decision to publicly support gay marriage?

I've seen him speak, up close and personal, when he was campaigning for Senator. I was taken in completely.

He rose on the wings of The Machine. They finally had their man. Obama needed Daley and his clout. Daley saw a way to bolster Chicago's profile and pocketbook for decades.

Right now, I HOPE it was political, and he's got the numbers to back up this decision because it's vitally important to me that he wins in November. It's the same for anyone on disability, or without insurance.

There's so much at stake. The parties are not the same. Yeah yeah yeah, there's a group of people who benefit regardless of who is in power, but who is President matters.

* * * * *

Bob has been awesome. It's been good for a couple of years, and lately I've really needed him. Besides all the crapola with the surgeries, I've been smacked with the ugly stick and he doesn't care.

For my mom, for Mother's Day, I'm making manicotti with homemade pasta and sauce (and whole milk ricotta and fresh mozzarella).

I used to love cooking. This blog, Flickr and FB used to be filled with photos and my recipes.

I've lost it, though. I've been SO uninspired. And the effort of it... I used to love complicated recipes. Now, I just want to be able to throw something in the oven and be done with it.

I think some of this comes from my sleep issues. I'm near lethargic most of the time. When I get myself started on a project, even something small like washing some dishes, I am fatigued the whole time. It's not a matter of just getting up and doing it and then I'm into it. Instead, I just get more tired from the effort.

I don't like it that I think of cooking as a chore. That's not how I've ever lived my life.

It's such a relief to have my hair grown back in. I'll (try to) never curse it's poofiness again. I wish it was just a little bit longer so that I could put it up when it gets hot... maybe by August.

* * * * *

I made a lacy top for myself out of Knit Picks Comfy Sport:







I wish Bob would get a shot of me smiling, instead of always between poses when I'm not ready for him. Oh well.

* * * * *

month two - not pregnant. Trying not to be bummed, but the wicked cramps are making that difficult.

Timing sucks for getting pregnant this month as Bob was going to be at his parents' for Mother's Day weekend, and that's right around when I'll probably be ovulating (hopefully a little earlier). Got the math wrong, it's actually the following weekend.

I promised myself not to get too sad about it until we're six months in, and then I'll be begging any doc who will listen just to get some clomid.

ZOMG. Today is the first truly warm and sunny day of the year. We had some heat in March, but it was usually on overcast days. Today, though, is made of pure summer.

and it melted me. I went out wearing jeans and a short sleeve top and everywhere the sun hit me, my skin felt itchy and assaulted.

Being sun sensitive is very difficult to live with. It's probably the worst daily aspect of lupus - that the sun makes me unwell.

I hate staying cooped up.

bleh. I'm just irritated because my stupid foot is another stupid symptom no one can explain and I'm tired of being the "mystery" patient. I'm tired of being a puzzle that needs solving. I'm tired of going through test after test, only to be told my symptoms (like my hair loss) are idiopathic.

It's leaves me with - what's going to go wrong next? I haven't had a break in a decade. Even now that I'm on meds and getting regular care, lupus still rules my life and still causes all sorts of wonky shit to happen as it attacks various organs willy-nilly.

I keep thinking I'll be able to have a normal life, that I'll get well enough to get a decent job. Days like today, though, when just a short walk in the sun is painful... what can possibly be normal when I'm forced indoors for most of the day?

I *am* better than before, but it's not enough. And I think I've reached the best it is gonna get, especially as I get older. That's scary and depressing, and it pisses me off.

My right foot has been swollen for a couple of months. My mom thought I should get it checked out, and I needed to check in with my regular doc anyway. They sent me for an ultrasound to rule out a blood clot (no clots). I don't have any pain, so they doubt something is broken. Yet another mystery symptom.

They want to xray my hands and my feet, to monitor for arthritic changes, but that has to wait until I know whether or not I got pregnant this month. No xrays if I'm knocked up.

I follow up with general medicine in a month. The attending also wants to get me into the high risk OB clinic, but when I went to make an appointment they said call back at the end of may and maybe we can see you sometime in July...! If I get pregnant before then, they'll have to take me before then. otherwise, I'm hoping to be able to talk to a doc about clomid.

* * * * *

I fear my refurb computer isn't going to last all that long. It runs hot and noisy. It's one of those compact dealies, and even though the processor and ram are good enough to stream video, I can tell my poor 'puter is tasked to the max. I think I might get up to a year more on it.

* * * * *

Talk about cuts to Medicaid scare me.

Each state administers their own program, so I'm just talking about Illinois with the following.

It's not that there aren't realistic ways to lower Medicaid spending. Being in the system, I see a lot of things that could be done better.

For instance, I have a $2 copay for all office visits. The state actually mandates that the providers collect this co-payment. UIC does all receipts in triplicate, written out by hand, and each stickered with my info. I mentioned it to the cashier at the eye clinic and she laughed. She said they'd done a study, and they lose about 50 cents/transaction on the deal, but it's state rules so they still have to do it.

Then there's the backroom handshakes with big pharma. While, on the one hand, I think it should be up to the doctor to decide what medication to prescribe, there are also documented studies that doctors are apt to buy into the next-best-thing when something that has a generic version would work just as well. And in Illinois, most medications are approved.

Regular physical therapy for the elderly, and those with diabetes or arthritis or obesity, has been proven to be cost-effective and life saving.

The shortage of doctors in rural areas is as simple as paying off the student loans of the doctors who work in poorly serviced locations. A 2-hour commute is too much for many of the disabled.

My right eye is so turned that I have the second-to-highest prescription for my lens prism.

I look gimpy. I know the important part is my vision, but the gimpy thing is getting to me... but not so much that I am willing to forgo attempts at baby-making.

I just keep telling myself what a treat it will be to get my lids done (the final surgery) when I'm 43. I still don't have lines at the corners of my eyes, so if they fix the baggy bottom lids, I'll lose 10 years from my appearance.

* * * * *

10ish days of waiting to see if this month's attempts were successful.

* * * * *

It's almost 2 years since I was in the hospital with effusions in my heart and lungs. Thankfully, it put me in the definite "yes" column for disability and Medicaid.

It also brought my mom back into my life, and I am glad for that.

* * * * *

I've been in the mood to design again... BUT... it's that whole sizing thing. When I check out the designs that people are actually crocheting (on Ravelry), it's obvious that my tailored style just won't work.

So I don't know where that leaves me. I can only get yarn for free if the pattern is getting published, and I can't lay out lots of cash as well as time for something that barely sells (but gets lots of accolades... like the Raspberry Fizz cardigan).

I have my fluffy head of hair again. It's all grown back in and is about chin length. It's in a somewhat layered bob with thick bangs and I finally think I have cute hair again. It'll look better by the end of summer, when it's shoulder length, but I'm just happy I no longer have scraggly ends with a halo of sprouts (and that it's not super short any more).

* * * * *

Another cycle, another chance at babymaking.

* * * * *

I had been severely down-in-the-dumps for a while, but it seems to be clearing up. Part of it was that the apartment had gotten kinda dirty all over. Not cluttered, which happens because there's not enough space for all of our stuff, but greasy or covered in dust and cat hair.

I was sorta pissed at Bob, and we got into a minor fight, but it led to both of us cleaning almost every surface of the kitchen (which is 1/2 the "public" space of the apartment).

And now that's it's all sparkly, I'm motivated to keep it that way (and so is Bob - he even wiped the stove after cooking sausages).

* * * * *

I thought I was going to have to argue with my psychiatrist about medications, but instead she admitted that the last time she wasn't considering my other health issues. She has a thing about long-term benzo usage, and while that might apply to some people...

one of the reasons I prefer benzos is because they've been around a long, long time so the testing pool is probably in the hundreds of thousands of people. When not abused, the body tolerates them fairly well and without long term issues, with the exception of physical dependency.

I will have to wean off of klonopin when I get pregnant. If I get the same sort of hormonal response as I did with my daughter, I'll be blissed out and won't need the benzos for a while anyway. I want to breast feed for as long as possible, so it'll mean years of minimal meds.

* * * * *

My lens prism creates a rainbow halo around objects, the right edge of my vision bows, there are vertical stripes on the right side of my vision... but at least I don't see double.

My brain seems to be slowly adjusting to it. At the moment, I wouldn't feel safe riding a bike, but I'm hoping I adjust enough to be able to.

* * * * *

I used to be *really* flexible. I was just naturally that way as a kid, and then my activities kept me limber. Now, though - UGH - *so* tight. I've decided to start stretching out again. Oy does it hurt at first. I know it will feel good soon, but right now --- ooooooooooooh.

wellllll... fixing my eyes is EVEN MORE complicated. Although they work on both eyes at once when they do the muscle surgery, I have "complicated strabismus" - meaning that all of the major muscle groups in my eyes have been affected by thyroid eye disease.

It probably means 2 or 3 eye muscle surgeries, about 6 weeks apart, starting at the end of June/beginning of July. My main eye doc said that it'll be a year before they fix my eyelids.

My problems with my eye muscles are multiple. First, my right eye has turned from the decompression surgery and my double vision skews left, downwards and twisted. Second, I have very limited range of motion in both eyes. For instance, I need to use a mirror to shave under my arms because my gaze just doesn't go there any longer.

* * * * *

There's a community market that runs in the summer/fall that's 2 blocks from where I live. My mom and I are considering being vendors. It would take some investment in a canopy (I sold mine) and a display, and it would be LOTS of work setting up and breaking down. Plus, to make it worth it, we'd need to be there every Sunday... and my mom already works a full-time job. I know my mom, and she won't be up for it every week.

There's a lot of downsides - the market is only in its third year and it is severely lacking in vendors, and therefore consumer traffic. The show fee is low- $25/Sunday - so that part isn't that much of a financial risk, especially when the cost will be split between me and my mom.

I also keep remembering how much I hate doing fairs/markets. People don't control their pets or watch their children. People complain about the prices. People take up a lot of time asking detailed questions and then leave without making a purchase.

AND my main motivation is to sell pieces I've already made, and not to be a repro factory again. I don't have that in me any longer. I can't crochet for more than an hour at a time without pain, and that doesn't add up to enough stitching time to keep up with the demands of weekly sales.

If I hadn't sold my canopy, I'd probably just sign up for the market for the last month, and try to sell off my inventory. But the canopy and saddle bags and sand will run 300-400 AND I'd have to store it all at my place.

I have a few months to consider it.

* * * * *

In complete contradiction to the above, I'm thinking of selling off my yarn stash. Between yarn and garment samples, I take up a lot of space in my dinky apartment.

* * * * *

The problem with using nicorette lozenges: I'm still addicted to nicotine. Sure, it's better for my lungs but I'm still an addict. I need to just quit it all entirely and cold turkey. AGH.

bleh - not pregnant this month. The good news is that we *did* get the timing exactly right, when I count back 14 days. SO that means I am picking up on my body's clues. I can't use those ovulation predictor kits because they require one to hold one's pee for 4 hours (and you aren't supposed to do it first thing in the morning), and I just can't hold it in for that long.

I'm sad but not overly so. It's just the first month of trying.

I'm SO glad I didn't need glasses until after the square-ish chunky hipster glasses fad.

Mine are BIG like the 70s, but shaped like the 80s.

The tortoise shell frames are darker than I thought they'd be, so the pattern isn't as noticeable as I would like. I'm tempted to add a few crystals, but I'm a little doubtful that they would stay in place. Gluing crystals to plastic is iffy, especially if they are tiny. I'm looking into fixatives that work with both crystals and plastic.

* * * * *

I still can't believe how involved it is to treat thyroid eye disease. If my old stupid asshole doctors had caught my hyperthyroidism when it started presenting (2-3 years before I was diagnosed), I wouldn't be in this position.

The total cost, so far, for repairing my eyes is $16k. The other surgeries and follow-ups will add another $15-20k.

In 3-4 months I'll be ready to have the eye muscle surgery, and if I'm not pregnant I'll schedule surgery for during my period so that I don't need to miss an ovulation. Then I'll do the same thing with the eyelid surgery (or maybe surgeries, I won't know until Monday if both eyelids are done at the same time).

I won't know until the middle of next week if we were successful on our last attempt.

* * * * *

I needed to get an ID because mine had expired and it is the absolute worst photo of me ever and it cements that no more photos until after the surgeries. Being cross-eyed and popped open and baggy... I know people tend to exaggerate negative body image type stuff but I'm apt to be optimistic/work with what I've got. And right now I'm quite unattractive. Enough so that people I see regularly empathize and talk up the fact that surgery will make it better, instead of trying to convince me that I'm prettier than I think.

Being pretty... well... I always lived by the motto that I was pretty enough for my own purposes. Considering Bob isn't going to leave me because of my appearance, that motto probably still holds true because prettiness yields no bonus at this point in my life.

My vanity has taken it hit, though, because it does mean enough to me that I don't want photos taken and I'm reluctant to meet with people I haven't seen in a long time.

* * * * *

I've had *the worst* insomnia of my life this past week. I'll fall asleep between 10 and 11, and then like there's an alarm clock I am up at 1:30. Every night for a week. I get up for a few minutes, then I lay back down and try to breathe myself into relaxation. *If* that works, I'm up again between 3:30 and 4:00, then again at 6:30 and that's when I give up.

Napping during the day has been impossible. I just lay there, awake even though I'm exhausted. I don't know why this is the case.

There's no point in starting different meds because I'll have a month to wean off of the psych drugs I currently take if I get pregnant. I don't absolutely have to, according to their classifications and studies and whatnot, but I feel it is the right thing to do. I'll have to stay on the meds I take for lupus, but hopefully lowered dosages will manage symptoms adequately - but there are very few indications that those meds cause any issues for a fetus.

* * * * *

I learned amazing news about my daughter today. I'm not sharing - it's her life, and I don't know who she has told and who reads this blog. I'm rooting for her.

I know I said I'm taking the long view when it comes to getting pregnant, but it's difficult. This month we got the timing just right, so I'm already a little excited. I need to rein it in, though... even with the timing just right, it can still take months.

* * * * *

I trimmed/tweezed my eyebrows, and that was a mistake. My eyes still look popped open (just not bulging, too) because I have significant eyelid retraction. My bushy brows were shadowing in a way that minimized the effect, so I should've let them be. Now that my brows are arched, the popped-out look is more intense. a big old DUH on my part. If I get preggers, it'll be at least 18 months before I have any more surgeries, so unkempt eyebrows it is.

* * * * *

I looked at a couple pics from when I was pregnant with Julia (21 years ago), and OMFG it didn't matter how big my belly got, my boobs were always bigger. At least there are better bras these days, and I know I'll be able to find my size. Last time I was nursing, I'd say that at my boobiest, I was a 34G (with a size 4 waist... it was ridiculous).

* * * * *

Our lease is up for renewal next month, and if the landlord wants to raise it I'm going to put up a fuss. It didn't go up last year, but I've looked around Craigslist and rents are still way way down from 3-4 years ago. We'll probably move out next year, and we're already saving for the possibility because I insist that we use movers, and not do the heavy lifting ourselves. It's expensive... $400-500 probably... but I hate asking friends to help, and I hate dealing with rental trucks.

We might hold out for one extra year, because in 2 more years Bob should be at a comfortable salary at his job. His supervisor said he'll be promoted by mid-year (this year), and if we hold out an extra year he'll also have another raise in the mix and we should be able to afford a place we actually consider *nice*, instead of merely good enough for now.

* * * * *

I'm still struggling with nicotine. The Nicorette minis help keep the jones away, but I still struggle with myself when I walk by places that sell tobacco. I hope to be weaned off of the Nicorettes in 2-3 weeks. Hopefully.

* * * * *

My hair had always grown pretty quickly, and when I was hyperthyroid it grew WAY fast. Now, though, with normal thyroid hormone levels and being 41, I have a more normal rate of growth and it's driving me batty. I want to add highlights, but I've made a deal with myself that I have to wait at least until I have shoulder length hair, so that I can trim away the damage of color touch ups and still have medium-length hair.

* * * * *

More than 3 weeks to wait for my glasses. Ugh. Wearing a patch has grown old. It makes my eye sweat and cuts my field of vision in half.

Baby-making is some fun stuff... hehe.

My great-uncle, the one who was a Captain in the Chicago PD, was pro-legalization... 60 years ago. WHY are there still potheads in prison? Stupid waste of money. My uncle was for the legalization and regulation of all of it. He didn't blame heroin for junkies anymore than he blamed beer for alcoholics.

I forget about... well... my grandmother, too - she picked up and moved to Hawaii and had a career there.

Both of them were unusual compared to their peers, but not so unusual by today's standards.

I realized that yes, I am happy. The roots of that thrive in good soil, thanks to being raised by very forward-thinking old people. And finally, finally, the joy of my memories is greater than the pain of their loss.

* * * * *

I picked out glasses. I'll get them in 2 weeks, but it won't be until April 18th that I can get the prism backing. The glasses are large-ish tortoise shell, sorta in the shape of Blues Brothers glasses. I got the Transitions lenses, in grey. I'll post pics after I get them.

* * * * *

Saw a crocheted beret that made someone look like a penis-head. And it's not the first time. I could probably put together an entire pinterest board of penis-head beret-wearers.

* * * * *

Hooray for being fertile on the weekend... I know what *I'll* being doing... ;)

A response to someone else's comment in their journal, but more fitting for my own entry instead of going off on theirs:

I just feel bad for her. A cousin sent me a photo of our great-great-grandparents, and I thought I saw a resemblance between our great-great-grandmother and my sister, so I FBed her a link to the photo. Her response was to block me on FB... and we have over a dozen cousins in common on there. QUEEN of denial.

If I don't exist, then maybe her father isn't a pedophile? I don't know. I know she let him walk her down the aisle and she lets her own son near him. The same guy who not only messed with me, but broke our mom's jaw and left her covered in bruises many many times. She has birthday parties for her son where she expects both my mom and my step-father to attend (they've been divorced for 20 years). And then she blames my mom for not getting along for the sake of her child. It's not so much about my happiness being revenge, but that her lack of it is proof that her choices are just doing more damage.

I needed a sun hat.

So I made one.

The pattern, the Street Level Sun Hat, is available (click the pic):

The only thing I don't like about my weight gain is my chubby cheeks. I've got the kind of face where I need to be rail thin for my cheekbones to stand out... unlike my mom, who has a perfect face no matter her weight. Once my hair is longer, it will lengthen my face and hopefully that will help with the chipmunk cheeks... but still, I wish I could put my 100 lb face on my 125 lb body.

OH IT FEELS SO GOOD TO POST ABOUT THE MUNDANE, THE VAIN, ANYTHING BUT "POOR ME I'M SICK"!!!!!

Baby on the brain means my designing mind keeps thinking about layette sets and tiny little hats.

* * * * *

I wish I could afford a good colorist. I'd like a few highlights, and I'd like someone good enough to touch them up without slowly turning more and more hair the lighter color. I don't even want to go *that* much lighter, and maybe even no toner - I just want what my hair would look like if I could let it get some sun. (Speaking of which, I need a new floppy hat. All the ones on the Target website that I want are only available at the store. Hopefully the one by me will have a decent selection.)

* * * * *

I love having Italian genes. I love having bootie and boobie and a strong nose (especially now that it's straight, which I still can't totally get over).

I love having been raised in an Italian family and learning how to cook by smell and touch.

* * * * *

The post-surgical opiates kinda wrecked my appetite for a while, but now it's back AND I have the energy to cook - just in time for the spring goodies to start arriving at the market.

I haven't resumed my love of baking, which makes me sad because I've had quite the sweet tooth. But I crave cake, and cake is work (when it's from scratch).

* * * * *

Bob brought home a sinus type cold and I'm wiped out. He's been sick for 2 weeks. It's been about a week for me, but I've sorta plateaued at hack-hack-sneeze-sneeze-oh-look-lots-of-boogers.

Now that it's been 2 1/2 months since my right eye surgery and one month since my left eye surgery...

I no longer have BUGGY EYES! I still have eyelid retraction, which makes them look popped open. And I have lower eyelid droop so I have major bags under my eyes...

BUT STILL - lots and lots of improvement in my appearance. Enough that although I am looking forward to the eyelid surgery, I can live with how I look right now. People don't stare any longer.

Envy drives me batty. Envy of any sort is not something I really understand. Woman-on-woman envy of beauty leaves me feeling slimed.

* * * * *

I'm really lucky to have good friends. I'm really impressed with the menfolk in my life right now. I've had a few make a point to reach out and let me know they care about my health trials... and that's a lot coming from a dude (a *spontaneous* phone call just to check up on me, for instance). And a few others pop up on FB to crack in-jokes that are still funny 20-something years later.

And yes, I've done the deed with most of them. I was Queen of the Geeks and as long as no one got possessive, no one had to be a virgin either. I don't regret my teen era of flooziness. They're all good guys and much fun was had, and these days we get to hold fond memories of each other.

* * * * *

I'll be stuck with wearing a patch for another month. I need to get prescription eyeglasses and then on April 18th, I go back to the eye doc and they fit the prisms on the glasses. It turns out that the surgery has also caused some near-sightedness, so I need prescription eyeglasses and I can't get away with fake lenses. After everything, the cheapest I've been able to price it out is at Costco - 109 for the lenses, 40-60 for the frames, then another 45 at the eye doc for the prisms (which can be swapped out should my needs change).

It's a good thing I've had a few months to save because that's how long it's taken. And then I'll be wiped out. But I can't live with my extreme double vision.

The eye doc also said my eye muscles are really tight - I still can't turn them to the sides or up all that much. She said that when I have the eye muscle surgery, it will be the more involved variety because they need to work on several muscle groups in each eye.

She's ok with me putting off surgery to try and get pregnant because my corneas look ok (a little dry, but not that bad). She said that in the long run, a longer wait is actually better because it really gives my eyes a chance to settle into their newly-formed pockets.

* * * * *

I made a huge pot of chicken rice carrot soup. I hope it all gets eaten. I had SO much leftover chicken, that I ended up making about 2 quarts of soup. That's a lot for just me -n- Bob. I'd freeze some of it, but I'm all out of the right size plastic containers so I guess we'll just be eating soup for a few days. (check that - *I* will be eating soup for a few days as Bob is going to visit his family this weekend)

* * * * *

Also, part of the reason I'm healing up well is because I'm doing the irrigations religiously... but not with a neti-pot, with a squeeze bottle. SO SO much better than the pot... a lot less back of throat action, and a feeling of being more cleaned out. I think I will probably continue to irrigate even after it isn't doctor's orders. I have allergies and it really makes the itch go away, as well as clearing out mucus that gets a little thick or dried out.

* * * * *

I miss the color my hair used to become after sun exposure. It never took much - just a couple days at a pool (or the beach) and my hair gets white streaks and the rest turns reddish-blonde. Right now it's a dark blonde that's kinda plain.

Or maybe I just want to mess with my hair because I hate it being so short and I have no patience for growing it out. It'll be autumn before it reaches my shoulders and in the meantime I feel the short hair ages me. Mostly it's just a very boring haircut that is good for growing out but totally BLAH at the moment.

And it actually feels good to be girly-fussy about something. I had more important things to deal with for so long that I stopped caring how I looked.

I've been certified healthy, finally, by all my docs. My lupus, barring mild flares and the chest pains I get before my period, is controlled. My thyroid hormone levels are in the sweet spot. I am no longer in danger of going blind from Graves eye disease and I am healing well from those surgeries.

My ENT doc mentioned today, during my debridement, that she expected I would heal well after she saw my thyroidectomy scar (which is practically non-existent). She said that she could see how well my system knit itself back together. My biggest risk, because of the immuno-suppressants I am on, was a post-surgical infection but they gave me a 10-day course of really strong antibiotics and that worry is in the past.

Lupus still means I get fatigued and that's just a part of my life. I need more rest than most people, and I need even more during the sun months. But, even so, I'm HEALTHY. For the first time in so long it would be depressing to actually count the years.

And mentally I'm doing well, too.

And Bob and I are the best we've ever been.

To those of you who've been reading this journal for the nearly 10 years I've kept it - thank you. It's been a long journey, and your friendship and support have made a big difference, especially when I've been house-bound.

Now it's time to get back to making stuff. I've got a writing project with a narrow deadline, and that project will lead to some web work and learning the ins-and-outs of Kindle publishing (I've already read through it - it seems simple enough).

I still want to make pretty clothing, but my ideas are beyond my pocketbook for the moment.

My right eye is visibly crossed and my double vision is really bad. It'll be at least 2 months before I have glasses, so I need a patch... I mean, I've gotten pretty good at keeping one eye closed but there are some tasks, like typing, where I just can't do it (so I rely on the red squiggles of Firefox spellchecker to guide me).

* * * * *

I have 3 doctor's appointments this week. That's exhausting. Especially because the Tuesday appointment is a debridement. Today I see the dermatologist, mostly just to get a refill. I have a discoid lesion on my back, a small one, and I'm wondering if they'll decide that I need more aggressive treatment because I'm still flaring (mildly) even on all the meds I take.

* * * * *

Starting in March, we're going to start trying (again) to make a baby. I feel really good about it this time around - my cycles have normalized and I'm getting great signs of fertility. I have a long wait before the next set of surgeries can take place, and as long as I can live with double vision, I can put off the eye muscle surgeries for a while.

Bob is very excited about trying again. We want a child SO SO much.

I'm really glad to be in contact with my Aunt Pam. Unlike my mom's family and my step-family, my bio-dad's family is small. Left living is my Aunt Pam, her son and her two granddaughters.

and me.

It's still... weird for me, though... I want to know her opinions on stuff I don't know how to ask... like why my bio-paternal-grandparents wanted nothing to do with me. Was I ever mentioned or referred to in any way? I know my bio-paternal-great-grandparents kept photos of me, that my mom sent them, on display.

* * * * *

10 days since my surgery. I feel mostly ok... still some pain and I'm still very easily worn out.

My double vision is pretty bad. My brain is good at understanding the confusion when it comes to reading... it's that thing where you recognize words even if all of the letters aren't making sense. However, that slows me down so when I'm not typing, I'm covering one eye when I read (because it makes the process run at normal speed).

6-9 months before the next set of surgeries. I didn't realize it was going to be that long.

Thanks to a reader who posted a comment, I learned about stick-on prisms for double vision and that should substantially reduce my cost in addition to allowing me to change the prisms as my vision changes (which it will, which is why they wait so long for the muscle surgeries).

* * * * *

TMI ALERT: ewwwwwwwwwww at the stuff that is coming out of my sinuses. I'm not sure why there's more gunk this time around but every time I irrigate there are great big bloody globs, or scabby bits, or chunks of packing.

Hopefully this means the first debridement won't be as bad as last time. I'm really nervous about it... prior experience only heightens the anxiety because it is one of the least pleasant medical procedures I've ever had to withstand. Multiple tools simultaneously shoved into my sinuses, with the purpose of sucking and scraping and picking them clean. {{{shudder}}} It's as horrible as it sounds, even when I load up on drugs.

and OH YEAH - I had an allergic reaction to my pain meds and I barfed for a bit last night. I felt ok post yack, but it was violent while it happened. I probably made it worse by taking the meds on an empty stomach but now I'm afraid to take them at all and that makes me even MORE itchy about Tuesday's debridement.

This stunning basketweave afghan is going to the highest bidder! Hand-stitched in premium quality washable wool, this simple yet elegant afghan is an attractive (and warm!) blanket that loves being on display. 36 inches by 41 inches.

100% of the proceeds will go to aid in the cost of a seizue alert dog for a fine young gentleman named Dylan.



Dylan is my 15-yr-old cousin. He suffered a brain injury at 2 weeks old and has since suffered seizures that have progressively gotten more intense and less predictable. Numerous medications have not been able to completely control them.

In order to give him more independence and a safer day-to-day life, Dylan and his mom have teamed with an orgainization in South Bend,IN that trains rescued shelter dogs as certified assistance animals. Dylan's dog will be trained to alert a caregiver when he begins having a seizure, to lead him to a safe place, and to support him should he begin to fall.

Dylan hopes to bring the dog home this summer, after the trainng is completed and the $6,000 is raised. With your help, we will reach our goal quickly and be that much closer to bringing the dog home.

THANK YOU SO MUCH FOR YOUR SUPPORT AND GENEROSITY!!

To bid, click on the pic and follow the instructions. Bidding will be open until March 31st. If you would like to help out, but aren't interested in bidding on the blanket, please consider donating through his Facebook FundRazr page.

The post-surgical BOP finally hit me on the head. It's still not that bad - just stuffy congested tiredness. That's *after* pain meds, of course. Without norco, I'd feel quite beaten up.

I slept most of the day yesterday and I'll probably do the same today.

and I had an idea... post-apocalyptic crewel embroidery. At first, I was thinking framed pieces, then pillows, but now I'm thinking thrifted denim jackets and jeans. And then that got me thinking about embellishments, in general, and suddenly I'm sorta inspired again. I don't even know how to embroider (but I know many hand-stitches), so it'll be an adventure, and something I can do while sitting.

Big however - I can't do it yet because I have really bad double vision now. Hopefully, the right glasses will return to me the acuity needed for embroidery, but at the moment I don't have it. But I *can* design pieces, both in my mind and in photoshop. And I can still practice most of the techniques (especially if I close one eye at critical points).

I woke up at 4:30am, had surgery at 7:30, woken up at 11:30. was home by 2:30... it's now almost 10:30pm and I still haven't slept. And I know exactly why.

First, my pain is relatively minor so it's not knocking me out, and I don't have to take so much in the way of the opiates. But second, and most importantly, I think the sleep I get while under anesthesia is so restful that I wake up refreshed (albeit incredibly dehydrated).

Hooray, one more step in the process completed. 2 debridements and 2-4 surgeries remaining.

I'm getting a little better about all of it along the way, although that might not say much when one has to be my medical caregiver. I don't know though - they are all so understanding.

Some surgeons prefer at least a 6 month wait after the surgeries I just had before performing the next round. I've weathered these so well, that I have confidence my body isn't responding with lupus insanity and that makes me feel better about trying to get pregnant. So starting next month, we'll try and I'll just wear special glasses for a while. If I don't get pregnant by the time the surgeon would normally do the muscle surgery then I'll go ahead with it. It's something that is medically necessary but not any sort of emergency at all and as long as the glasses fix my double vision, I can deal with it for a year or longer (figuring in a long enough time breast feeding that I have enough stored up for surgery and post-surgery... I get very little from pumping from prior experience and it'll take months of freezing to get a week's worth).

I'm very happy about how everything has happened so far. I mean - the debridements are horrific, no doubt about it, but I just push myself back into the chair and knuckle the armrests and deal. I whine as much as the process allows, and it helps (and I pre-warn the doctors to just ignore my whining and only take me seriously if I actually ask them to stop).

Being allowed both of those things - expressing my pain and having the power to stop it - makes all the difference. I haven't been accorded that by most of the other doctors I had prior to going to UIC for just about everything.

I wish I was sleepy right now. Bob is zonked out from such an early and eventful day. I think I've got another few hours because even the combo of norco and klonopin and zyprexa doesn't have me tired.

Part of the problem is I still have a persistent nose bleed, so I have to keep upright with my head slightly tilted back. Not the ideal position for falling asleep (although thank goodness for Firefox spell checker because I now have double vision as close as my monitor... UGH that means prismatic bifocals?, I think?... they're gonna be SO expensive. boo.)

Bob has been so helpful through all of this. Thankfully, his job is very supportive of putting family stuff first so they don't bat an eye at his taking the time off (and he gets SO much time anyway). He's staying home tomorrow, even though I think I'll be ok, but he can always do some editing work to keep busy (he is editing manuscripts for extra cash - he just sorta fell into it).

I know I'll crash from this high sometime between tonight and tomorrow morning and I'll sleep for about a day, and then feel run down for a week or so but right now I feel amazingly good considering they removed some of my freaking skull today.

I think I'm going to at least sitting back and seeing what happens. Even if it takes an hour or so, I think I have the patience, now, to sit there. At least the news is on. That always helps...

For all my anxiety, my body deals with invasive procedures with some fortitude. I'm the one who had surgery where they chipped bone away from my skull and Bob is the one passed out on the futon.

To be fair - I feel like I slept for a couple days after that wonderful anesthetic, fueled by a mild Norco high, so I'm all chatty and feeling pretty good (except for the constantly yet slowly leaking nose bleed).

Poor Bob woke up at 4:30 am to get me to the hospital on time, and he's exhausted. We decided it was too risky to trust public transportation at such an early hour, and we didn't want to be waiting for a bus in the pre-dawn hours in single digit temperatures, so we got a Zip car for the ride there. But then Bob had to drive it back, and then take the bus to return to the hospital, all while carrying all of my clothing.

Then my mom picked us up from the lobby and drove us to the drug store for my pain killers and antibiotics and another case of filtered water (for the irrigations).

It's VERY different this time - way way way less pain without the septum issues and nose splints. Also, I'm only stuffed up on one side. That might change, but last time I was instantly congested on both sides of my face and I had to mouth breathe for a couple of days. Right now, I've got one side packed with tissue (for the nose bleed) and my mouth is closed - my right side is super clear (probably thanks to the megadose of afrin they gave me).

I have a friend who probably has Graves, and she also has a noticeable goiter, but she doesn't have health insurance. She's asked me if her symptoms sound familiar, and she's textbook Graves (especially with the goiter), but she's like I was a couple years ago - very limited options and no regular doctor.

Her only real choice is County, but I hate to recommend that to her. She'd miss a lot of time of work to get sub-standard care... but she needs to do something because she's into the weight loss phase of the disease and that's when it gets dangerous. Not because of the weight loss, but because it usually means a sped up metabolism due to a rapid heart rate. That's dangerous, especially if she also has high blood pressure.

I feel so badly for her. She's a cool chick who also happens to be nice. She's one of the funniest people I know, but without ever being mean. Sarcastic, sure, but mean - never. I didn't know her that well back in school, but we've become FB friends and, well, she's a single mom with 3 kids who works 60 hour weeks and it's just not right that she doesn't have access to quality health care.

A week until surgery #2. I get deflated just thinking about it. After already going through it once... I mean, it wasn't super bad or anything, but I felt like crap for a solid 2 weeks after the surgery. And I'll need 2 more debridements.

Then I'll be all wonky-eyed until the muscle surgery (or at least I think it's one surgery for both eyes, but I don't know that for certain).

If I can deal with the double vision, I'll put off muscle surgery and try and get pregnant.

My septum is shifting. The doc doesn't think it's enough, at this point, to redo it. It's just the very front part, right behind my skin, that is taking a right turn.

Today's debridement went smoothly. I grumbled and moaned, but it didn't take long because I'm mostly healed up and the irrigations have done their job.

Even though they make me feel weird, I think I'll keep doing daily irrigations indefinitely. It feels good to have my sinuses washed out and I know it will help once allergy season arrives. I found out that many of the ENT staff does regular irrigations - it's just good maintenance.

* * * * *

Hooray - I have a small project. A friend of mine from high school wants to put together an anthology of short stories. So not only am I writing one, but I'm putting together a website where the writers can post their works and then get comments from the other writers.

It's the perfect sort of thing for me right now. AND after it's ready for publication, I'm going to dip my toes into Kindle publishing and the necessary formatting. I've already read through it, and it seems very straight forward.

My Aunt Pam, and her only son Raymond, are all I have on my bio-paternal side. I guess I want to feel some connection. And I do, I suppose. For the first time in decades, I found myself sorta almost praying, for them and their healing.

I guess I want to feel like some part of me came from them, or from my bio-dad. But it doesn't seem to be there. Or maybe it's just that I feel so close to the my mom's family, and my step-family.

* * * * *

I try not to be petty, and for the most part I succeed. But there's this one chick... just one... who I actively dislike. She should be inconsequential, but we have a friend in common and the history of the three of us makes me NUTTY when I see her referenced or commenting on FB.

I get truly evil thoughts about her and it's just plain silly.

On my bio father:

I felt more than I thought I would but less than I think I should. A door is closed. I'm relieved, but also more deeply sad than I thought. I'm sad that a tragic life ended predictably. I'm not sad I was spared any ongoing association.

The details are too close. I made my own life for myself. Created it. Realized along the way that getting beyond something sometimes meant erasing it.

I realized today that I know exactly who I am, and I'm so cool with being her. I still carry myself with pride and hope, no matter what. I was taught how to do that by the best of people and they are my ancestry and heritage and inheritance.

Considering what happened to me growing up, it seems twisted to think it better than any alternative, but I am, now more than ever, so grateful for my grandparents and great aunts and great uncles and most of all - my cousins. I'm so grateful that they make it easy to be proud of them, to love them, to cheer them on.

I have the bounty of family. Even cousins in Italy that I've never met have offered their home to me and my husband... and that's the sense of family with which I was raised. The door is always open and if there isn't food on the table, it won't be long until there's a feast. When I'm sick, they send well wishes and flowers and chocolates and love. When I'm doing well, they're the first in line to give a "good on ya". There's no jealousy - just community.

So while I'm sadder than I thought I'd be, but less sad than I think I should be, this is fleeting. My bio dad was unknown to me. Hearing about him, and his demons, and the truth that was kept from me... I'm glad I lived with a different tale until now. I do not feel cheated for this particular lie.

More details won't be forthcoming. It's a twist in my saga I hardly believe myself, except that it's the one time a secret did me any good.

wow, that's some mojo. SECONDS after I posted my last entry, my Aunt Pam got back to me on FB and wants to get together to catch up... and she said the message was a "wonderful surprise".

This makes me SO happy. This will be the first contact with my bio-paternal side in over 20 years. It's not something I focus on all that often - I never knew my bio-dad so there wasn't anything to miss and the hole was filled with fantasy. All I had was what my mom told me - that he was smart, good at chess, a poet, had curly blonde hair and a somewhat demented sense of humor.

My mom's family is HUGE and my step-father's family embraced me, so I never felt disconnected really. But still... it's like there's half of me that I only barely know about.

When I met my Aunt Pam so many years ago, I scanned her face for the familiar. I really wanted to see some similarity, but I didn't notice any. I wasn't really surprised, though - I have my mom's face... it's just a little bit longer and more angular.

I haven't gained any weight, but somehow my boobs have gotten bigger. I think it's from wearing decent bras for a year, because they seem shaped more nicely without a bra these days.

(and no, I'm not preggo. absolute impossibility.)

* * * * *

The wait to hear back from my Aunt Pam (or the FB persona I think is my Aunt Pam) is killing me. She only has 9 friends on there, so I am guessing that she doesn't log in all that often. Plus, I have no idea how she'll feel about contact from me. Years ago she was happy about meeting me, but that could've been curiosity satisfied for all I know.

* * * * *

Die Antwoord's album, TEN$ION, is a-freaking-mazing. I want more new music that's just as good.

Well, fuck.

I keep staring at my new nose and today I noticed it seemed bent a little again. The ENT surgeon said that the cartilage in my septum has "memory" and there's a chance it will "migrate" to its original position. I think that's happening already. I see her on Tuesday for another debridement. I think that if it is showing signs of migration, she'll reset it during the next decompression surgery and probably leave the splints in for a longer amount of time.

Or I'm just paranoid.

I think I found my Aunt Pam on FB!!! She's the sister of my biological father. She and I have met before, when I was 19 and in *dire* straits. I lost contact with her mainly because I didn't maintain it. I think she wanted to leave it up to me.

I sent her an FB message. I really hope it *is* her - she doesn't have any public photos available. Name/age/location/education all seem to line up with what I remember. She's my only link to my paternal side, and I remember her to be really sweet and caring.

:( Bob will be away this weekend and I was already missing him a lot during the day while he's at work. He's headed out to his parents' to celebrate his birthday and his mom's (he was born the day before her birthday, so they always celebrate together).

* * * * *

I'm going to try and stop stressing about my lack of productivity until after all of my surgeries are completed and I'm healed up. I can't be reliable in any fashion until it's all over with anyway - I have no idea what to expect each step of the way (when it comes to pain and recovery time and how well I'll be able to see during the healing processes).

I just wish I could come up with an idea for something, in the meantime, that I can use to fill in the gaps when I *do* have energy. It's not so much that my mind is blank, but that I can't think of anything that doesn't require resources not at my disposal. Even so, I used to be really good at finding creative opportunities.

That leads me to believe that my heart and mind are elsewhere. For as much as I want to be productive, what I need even more is lots of sleep and reduced stress. My body knows this and keeps me directed towards healing.

I just need to have faith that once the surgeries are behind me, the muse will visit me again.

This political year just might break me.

Because y'know what? I am bitter. I am angry that I couldn't get decent healthcare for 20 years and now I'm in this limbo where I have few options but sitting around all damned day.

Yes, I am still grateful to have insurance now but not so grateful that I think I need to hang my head in shame or stand by while people who know me kvetch about those on the government roll.

I DO feel squandered. I DO feel I could have offered much more to society if I had received the counseling, medications and healthcare I needed. I DO NOT think that is too much to ask of society in return for what I was (and still am) willing to give back (when able).

I HATE not being able to take full advantage of what I am good at, besides resourcefulness. I HATE all the surgeries and appointments and procedures and side effects. I HATE being tired all the time. I HATE knowing it would be SO different if I'd had healthcare all along.

And OF COURSE it's also about money. It was never in my plan to be in my current income bracket. I KNOW I have a lot more earning potential than I've achieved and because that affects how my life will be when I'm old - it matters. I don't care about stuff, but I do care about being able to afford rent for the rest of my life.

Is it really so hard for people to walk a few steps in someone else's shoes before throwing judgment at them? I can't believe all the hatred towards people like me.

The norco worked and my headache is gone. I think my ibuprofen ban is the reason I had such a bad headache.

I don't know what to do for non-surgical pain during these months. I'll bring it up with the ENT surgeon when I see her for my next debridement, to see what options I might have during this time period.

I'm a little worried about going through an episode of chest pain during this time. Ibuprofen clears up the problem because it clears up the swelling. Opiates don't do that, so while I might feel better after taking them, it's just a mask instead of a treatment.

* * * * *

I still can't get over my new nose. I mean - it's a small change, and people who only know me from photos probably wouldn't notice. Maybe I notice it so much because I fixated on it a bit when it was crooked.

My headache has gotten worse and there's some pressure behind the eye where they did surgery. The pain is bad enough that I took one of the norco I was saving for my next debridement. Most likely this is just an odd coincidence and my headache stems from 2 weeks of sleeping funny because of post-surgical sinus congestion.

It could also be that I am not taking my normal 1200+mg/day of ibuprofen. I can't take it a couple weeks before and after surgery, and with my surgeries butting up against each other it means no ibuprofen for months. My joints ache and my neck, especially, has been creaky. The pain has slowed me down, and it's probably the source of my headache... fatigue, muscle spasms.

I hope the norco hits quickly. I'm hoping deep sleep helps.

I've had a splitting headache for 2 days. I'm concerned it has something to do with the surgery because the eye they operated on is tender all of a sudden. I have to see my dermatologist on Tuesday, and if I still have a headache I'm going to walk over to the eye clinic and see if I can talk to the doc for a minute or two. I've been getting wicked double vision (50 men playing football, anyone?) but that's a normal post-surgical issue (and the reason why I'll need the muscle surgery next).

* * * * *

I thought that redoing my website would help me focus... yield an answer to my "what next, what now" question.

Realistically, I'm out of commission until autumn - when I'll finally be done with all of my eye surgeries. Realistically, my lupus is just barely under control and once the sun returns I'll be in flare season. So I need a project I can monkey around with when I have the energy, but I'd like those efforts to have some long term benefit.

I mean, one thing redoing my website yielded - I'm in awe of the energy I once possessed. I have produced A LOT in the past decade... designs, patterns, photographs, websites... and the whole time I was beating myself up for not doing more.

I still really like the idea of my pattern generators. If I thought crocheters would actually take the time to get their own (accurate) measurements, I could totally spec-out the patterns. But it would be art for art's sake because I wouldn't get much, in the end, for the time I put into it. If I were a knitter, it'd be different, but crocheters like hats and scarves and toys and I'm only very rarely inspired to design such.

Now, more than ever, though, there's a market for handmade crocheted clothing. More people seem to be willing to shell out the cash for handmades - especially one-of-a-kind pieces. Getting those customers, though, means either selling at wholesale through a boutique or laying out the cash for fairs (and a booth setup). So I don't think crochet, in any form, answers my question of "what next?".

I'd rather put all that effort into getting website clients, or work as a photographer (mostly commercial stuff for artisans, but I'd love to do professional portraiture, too). After the surgeries, I'm going to do some self-promotion in Pilsen. I'm going to scope out the stores, check their websites, then go door-to-door. That's at least a couple dozen opportunities, and I only need one gig for it to be worth the effort.

My worry about that, though, is that it gets hinky to be self-employed while on disability because it could lead them to decide I am able to work enough to support myself. And while I wish that was the case, lupus makes life too unpredictable for me to be able to bet on that.

* * * * *

I really love Bob. I've really needed him this past year and he's been right there for me. I haven't been able to do much and he's been cool with that - even encouraging.

Although I wish he wasn't gifted with the slob gene. I've been too out of it for housework and he... just doesn't care that much about the place being messy. It's a really small apartment, so it gets cluttered quickly.

If my headache subsides, I'll do some dishes. But the whole place needs a scrub down to get rid of errant cat hair and dust.

* * * * *

It's a good thing I've been putting small bits of money aside for the past year because I'm going to need to blow it all on glasses I'll need for less than a year. But my double vision will probably get worse after the second eye surgery and it's already a problem. Anything past 10 feet has a ghost.

* * * * *

I miss someone today and it's very strong.

I did it! In The Loop is live. I still have 70 or so garments designs to add, and at least 3 websites to list on my website work page, but each section has content.

I cheated a little and used Flickr galleries for some stuff, but on the other hand - that's part of why I pay for a pro Flickr account... well... except that it's not as professional as keeping it all on my website. But the work involved is tedious. I might change it over a bit at a time, but I'd rather focus on adding new stuff.

Like - one-of-a-kind completed pieces. No repro work, except maybe different colors of a single style. I wish I had the $ to invest in afghan quantities of yarn because that's where I can really do some eye-catching work that has broad appeal (as opposed to clothing in specific sizes).

I have some money saved up... it took months, but I did it. I need it for glasses, though. I'm already seeing double from the first surgery, and it's likely that the second surgery will just make that worse. So I need glasses with special prism lenses and they ain't cheap. It bites my behind that I have to spend so much money on something I'll need for less than a year, but even right now I can barely see well enough to cross the street (and then I still usually close my right eye). I'll only need them until I have muscle surgery. I'm hoping that maybe the left eye won't go so wonky and I'll be able to get away without purchasing them. It would be nice to have that little bit of money there for some other, future need. If only they had a buy back program for used glasses.