I Can’t Even Spell What Makes Me So Angry

Several things are making me all ragey today, but at least I think I am past the stage of Ugly Cry from this morning.

  1. My former rheumatologist 
  2. My former diagnosis of Lupus and Sjogren’s Syndrome (now just Sjogren’s, as if it makes much difference)
  3. Hydroxychloroquine aka Plaquenil

Background:  I see a rheumatologist and an ophthalmologist every six months to monitor my auto-immune issues as well as monitor my Plaquenil usage.  In oversimplified non-medical terms, the pills keep my immune system under control so it doesn’t get all crazy and attack the important things like…all my major organs and such.  Plaquenil is the lowest in toxicity and least evil of my drug choices.  The other two choices would be steroids and cancer drugs.  Doctors have been prescribing this drug for decades, first for malaria and then for the noninflammatory effects, with the assumption that a patient will stay on it their entire life if it is tolerated.  Anyway, the OP did a retinal scan last visit and said the edges of my retinas are thinning a tiny bit, and the long-term Plaquenil use is to blame.  I told the  RH today and it seems patients like myself are embroiled in a bitter schism between these two types of doctors over Plaquenil and how harmful it really is or is not for eyes.  Long story short(er), I will try half my former dose from now on to make both happy and see how I feel.

Here’s the ragey part.  When I went on this drug over 15 years ago, the jerk of a RH I had at the time (not the one I have now) told me several things that I find now are inaccurate.  Not to mention he was pretty dickish about how he said them.  Honestly, the best shitty thing a health insurance company ever did for me was decide I couldn’t see this guy anymore because he was over the state line and I had to find a RH in my own state (which by then we finally had in my area). I get that auto-immune diseases are hard to pin down and find cause and effect and no one is ever really sure about anything but…

  1. Had he mentioned possible irreparable eye damage as a side effect of Plaquenil, I might have not chosen to take this drug at all.  I was told the most serious risk to me might be some hazy build up on my eyes that would go away if I stopped taking it.  He and my PCP were not interested in my concerns and were just pretty much – take it.  You need it.  That’s what all Lupus patients take.  End of visit.
  2. Since I felt mislead about the whole eye thing, I decided to ask my current RH the question that I had stopped asking over the years because I would always get shot down by my doctors with a big fat no.  In fact, a big fat no with added scary warnings of terrible consequences for even thinking about it. Could I have a healthy baby while taking Plaquenil?

Turns out, that answer is yes.

Yes. During my prime baby-making years, I could have grown a healthy baby.  A high risk pregnancy to be sure, with potential health problems to the developing fetus (especially cardiac system development), but in all the years my RH has worked with women in my position who have babies, it has not happened.  That’s a far cry from “you’ll need to adopt”, “your baby will be born without a fully functional heart if it lives at all”, and “how will you feel knowing this is your fault?”.  Not only did my old RH tell me these things, my two past PCPs supported these beliefs.  Even when I went searching for research articles and found bits of hope.  Everyone made this baby stuff sound like an impossible idea, and I believed them.  And now I’m 42.



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The High School Reunion in My Head

It’s May and graduation time at my institution – also our closing banquet theme is “High School Days” (or something like that).  So yesterday I was thinking about high school.  More specifically, high school yearbooks and then it all spiraled into adolescent angst and despair.  I have two high school yearbooks that have survived many moves, from my sophomore year and my senior year.  Damn I was a bitter, hateful child.  I’ve decided I need to find a friend with a fire pit so I can burn those books and any assorted “nostalgic” papers from those years.  I found a folder of random high school/college stuff not long ago that entertained me, but also I felt a little dread creeping in there mixed with some self-loathing and glowering, angry distrust of the grown-up world.  I also found a notebook of the most terrible, horrible, no-good-very-bad teenage poetry you will never* see. These are not items I need to keep.  They are not enriching me in any way.

I’m sure I’m not alone in wincing while thinking of “the best years of your life”.  I call bullshit on that.  How could those possibly be anyone’s best years?  Trying to find your identity, dealing with a changing body, worried about rejection from your peers, pressure to conform from all sides, high parental expectations, SAT scores, etc…and that’s just as a white, middle-class, heterosexual, Catholic girl in suburban Western New York without any known disabilities beyond being the weirdest person in the room.  Which I was.  I was also the funniest because I learned early on, if you aren’t classically pretty you need to at least be funny.

But weird trumped funny every time and in my senior yearbook where they put those stupid awards like “most likely to…” there I am, with my “award”.  Most Unique.  At the time I was pissed that I didn’t get Funniest.  I remember thinking that they clearly misunderstood the term Funniest and chose to go instead with Biggest Obnoxious Loudmouth.  Then I thought maybe they realized I should win both but it wouldn’t be fair that I be recognized twice, so they had to give Funniest to a runner-up.  In reality, I also thought then what I still think now:  Most Unique is a polite way of saying “You will be remembered as a big weirdo who shops at Goodwill instead of The Limited and doesn’t care about getting drunk with us at Friday night house parties and lives on the wrong side of the tracks in the old houses but we aren’t allowed to say all that so we are going to make it sound as if we admire your qualities”.  Most Unique is a dis in disguise.

My sophomore year yearbook is relatively unscathed except for highlighting some quotes from friends but the senior year…well, let’s just say the nicest thing I or my friends wrote in there is this on the inside front cover:


It all goes downhill in a shitstorm of teenage rage from there.  Because those were the BEST DAYS OF MY LIFE!  Yours too I bet.

Stay weird, my friends :)

*Never might be too strong a word.  Some of the poems are so bad as to be completely hilarious and maybe one day I’ll torture you with a few gems before I destroy them.

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A New Orleans Love Note

By 6:45 Sunday morning, both my bronchitis and my antibiotic decided I was done sleeping.  Looking out the hotel window, I see there is already a line forming at Mother’s.  It’s grey and sun is just starting to show off through the clouds towards the river.  Might as well go out and see the Quarter in a way I don’t normally see it.  Sleepy, foggy, non-Carnival time. 

Even at this time of year and even in the CBD, the wet streets smell faintly of spilled beer and broken bits of Mardi Gras beads hide in plain sight at the edges of the sidewalks. Those up are quietly going about their business of finding breakfast, making breakfast, or setting up their day.  Street entertainers are preparing their instruments and getting their tarot cards out.  Artists in Jackson Square are hanging their paintings. Passing one of the many coffee and beignet locations, a piano plays the question of whether I know what it means to miss New Orleans.  Yes.  Yes I do.
The French Market is just beginning to stir when I get there.  Vendors setting up their areas, ice thrown on the sodas, the crepe grill warming up.  In the flea market section I have to maneuver quickly around dollies full of heavy bins carrying cheaply made wares of no particular importance.  Most aren’t ready to greet the tourists who will wander through later to pick up Voodoo dolls made in China or ignore the signs asking to please not pick up the dried alligator heads, but one book seller has a nice box of old Mardi Gras doubloons to root though.  A weakness of mine, I pick out 20 that either correspond to mine or my sister’s birth year, or are sentimental favorites like Pete Fountain’s Half Fast Walking Krewe.   
After the market I wander aimlessly, slowly, up and down the streets that cross Bourbon, never able to remember the correct order of them all.  St. Ann, Dumaine, St. Peter, Toulouse…  Looking in gallery windows on Royal, stopping to try hot sauce and pralines on Decatur.  In the Royal street police station I stop in to check their NOPD vending machine and see what t-shirts they have this year.  I overhear a family of out of towners wanting something done about an aggressive panhandler.  They weren’t out and about yet on my way to the market but I see them everywhere now; beards and backpacks and dogs at their sides, in groups as numerous as the street musicians.  And why not?  If I had to be (or chose to be) a wandering vagrant, why NOT a city like New Orleans?  
Making my way back to Canal Street felt a bit like failure.  Not even noon and I was going to head back to the hotel?  But the sun had come out and I was definitely overdressed for the heat.  Maybe after a shower and lighter clothes I’d come up with an afternoon plan before my actual conference work began in the evening.  Maybe ride the streetcar down St. Charles. Then the serendipity of New Orleans happened, as it only does there.  Opening up the iPad to facebook a picture of doubloons for my sister, I see a message.  One of my Mardi Gras family just so happens to be visiting her boyfriend this weekend who lives in the Quarter.  He is having a crawfish boil and would I like to come over?  I love you New Orleans.
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Freddie’s New Shoes

That’s right kids, Freddie the Mercury has his new GD-expensive whitewall tires!  Considering the other ones were probably 60 years old, I guess it was about time. That meant it was time for HIGHWAY DRIVING!  There he is, flaunting his awesomeness at the mall.  He did @70 miles of high-speed driving Saturday and I must admit, the ride was smoother than in The Mighty Geo.  

That makes the next important thing (as far as I’m concerned) the window seals that leak like crazy, even the new seals.  One piece at a time.  

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Jewelry Tutorial: Bottle Cap Bubble Earrings

I don’t think you really need a tutorial to make bottle cap earrings and I’ve never even been interested in making them, but I just cut a case of Cheerwine bottles into glasses and every bottle came with it’s perfect little cap and I felt bad throwing them all out.  So this tutorial is like troubleshooting more than anything.

You see the regular cap earrings all the time but if you want something a little different, you need to get a dapping (sometimes called doming) block.  I think with a coupon I got mine at Harbor Freight for about $30.  Normally the set is @$50.  I have one because I like doming coins for pendants.  So, dapping block set with the two largest punches, a hammer, some bottle caps and a sharp nail.  If you have a hammer like mine, I used the plastic side, not the brass.  Seems to work better here.

Troubleshooting: some tutorials say to place the caps on a hot plate or candle warmer for a few minutes so you can peel off the rubber backing inside.  I can’t for the life of me tell you why that matters.  Not only does it not matter, but it was a real time consuming pain in the ass.  Don’t bother.  Also – don’t hammer the nail hole until AFTER you’ve domed your caps.  I tried it before and the cap crumpled and closed over the hole.  They were ugly and unuseable.

I used the three largest dome sizes, starting with the largest (duh).  I suggest 10 easy whacks with the hammer and largest punch to get a dome started so you don’t crumple it weird, then wail on it 7-10 more times.

Move onto the next smallest dome and whack 10 more times.  Or more if you’re feeling aggresssive.  Then I go onto the next smallest and use the #23 punch – 10 more whacks or until I’m satisfied.

You are going to want your nail hole going from inside to outside so you don’t smush your pretty cap.  The trick is trying to keep it in one place and not slide around so you get the hole in the general range of the top of the cap.  Good luck with that, I don’t yet have a good tip.

Yes, I know, it looks like I am hammering right into my floor.  Get a piece of wood – be better than me.  Without much difficulty you’ll get a hole you can then put a headpin or big jump ring through for earrings, pendant, keychain, what have you.  Enjoy your upcycling.

P.S. If you are thinking “hey, that looks cool but I’m not going to buy a dapping block set”, never fear.  I put them in the etsy store: StrangeLittleGirl

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Intermission: Ukulele Break

I have found that those ukulele tab sites are not always totally accurate with respect to my favorite songs.  I’m not clever enough yet to figure these out with respect to chords, but I’m happy to just figure out how to finger pick some of it…my apologies to The Beatles.

I wanted to share a quick video here of the chorus that I’ve figured out, but turns out WordPress doesn’t let me post videos unless I have a premium membership.  Huh.  Ain’t nothing premium about me so if you really care, here it is via YouTube I hope:  http://youtu.be/ihDt_Ajnv30

Now, I really need to get back to marketing my etsy store (Need some jewelry for Easter?  Sure you do.) because I just bought a POCKET ukulele (17″ instead of 21″) off eBay and I’m starting to want even MORE.  And a banjo ukulele.  And a kalimba.  Somebody stop me.

P.S.  The video also lets you hear what a Makala Pineapple uke sounds like with the strings that came on it.  Any review (written or video) that I can find states right away that the first thing the buyer did was change out the strings.  That kind of pisses me off because I think it sounds great as-is, and reviewers should be reviewing something unaltered.  When I play along with my online lessons, I think my pineapple with orginal strings sounds fuller and richer than the instructor’s ukes.  End rant!

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Ukulele Bag: Not quite a tutorial. But sort of.

Let me be clear – I’m not a good tutorial writer. Halfway through a project I think maybe I should have taken pictures to blog about it, and other times I think the project isn’t interesting enough to talk about anyway. Then again, it seems anything is fair game for online tutorials. And for the dumbest things – like how to hard boil eggs. I know because I have personally looked this up. Seems my husband and I disagree on the proper way to boil eggs and when I boil them, he feels they become impossible to peel. Yes, he has issues.

In fact, as bad a tutorial writer as I am, my top two posts on this blog happen to be how-tos: bottle cutting and Borax crystal ornaments. Apparently, people really want broken glass all over their kitchen and to do chemistry experiments with their laundry detergent. You’re a bunch of weirdos.

But I digress. Ukulele bag. I’m one happy month into ukulele ownership and in all that time, it’s been kept in a pillowcase when I’m not practicing. I’ve been looking for a sturdier bag to put it in but the “gig bags” out there for pineapple ukes kind of suck. Ugly, flimsy, some costing as much as three times the amount of the uke. I’m clumsy, so I want it in something that has at least a tiny bit of protection when I knock it off the coffee table. I looked at a bunch of online tutorials and I didn’t quite feel I had the skill – and no sewing machine. I had to come up with something simple but effective.


Enter the sweatpants bag.


Yup. I took a pair of my sweatpants and chopped them in half so I had two longish tubes. Turned one tube inside out and stuffed it in the other tube. That gives me smooth material against the uke so no fuzz gets caught in the pegs or strings. Sewed first the elastic (ankle) end of the inside tube closed, being sure to put a few stitches on each side to connect it to the outer tube, then sewed the outer tube shut. Sure, you could sew them both together but I did all this with hand stitching so it was easier for me this way.

So I have a basic two layer sleeve of fleece/cotton, wider at the bottom, that I can slide the uke into. It’s not a hard padded case or anything but for my purposes it will do just fine. Next, I shortened the inside tube but left it long enough that I could fold it over the bottom of the uke. Then the outer tube I kind of shaped and folded up over the outer front. Honestly, I kind of feel like I’m diapering it. I had planned to put some elastic loops on the end and two buttons on the outside, about midway up the case. Then I realized I had remnants of a cool silk shirt I had been cutting up for another project. It had sleeves that roll up and a strip of silk buttoned to keep them in place. Those are the two purple strips you see there, using the shirt buttons. I also took the hemmed collar off and sewed it at the top of the case, to make the elastic end look prettier. Then, the pocket for my tuner.


The little purple pouch with two zipper compartments has been kicking around a long time. I once sewed it into a coat when I went to Paris because I’m a paranoid traveller and wanted a secure inside pocket. Then it was in a light up suit for several Mardi Gras trips, holding money and extra batteries. Just a few stitches on each corner secure it well enough and my Snark tuner fits right in. Last, I wanted a strap.


This is the only part of the project I actually had to pay for. A whole $2.99 at Goodwill for a duffle bag with the perfect strap and D-rings. The zipper on the cheapo bag was broke so I didn’t even have to feel bad about throwing out the bag. I was just going to stitch the D-rings directly to the bag, when my husband asked if I had any of the purple material left. I did. I folded and refolded two strips for strength and put one around each ring, sewing the silk to the bag instead. Looks much better. That man might have issues with hard boiled eggs, but sometimes he comes up with a good idea.

This might be too hippy dippy for you. You might want something that looks more professional. Then again, you are playing a ukulele. Lighten up.

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