Social Sunday

I managed to drag myself out of the house to have lunch with friends from out of town.  It was in the low 90's and felt decent compared to our 100+ days.  We went to the shopping area with Bygones & Luxor.  While waiting for them to show up, I tried on a few dresses at Bygones. 

$19 (not a great pic, I know)

I won't post pictures of myself in them.  I need to drop at least 20 lbs and it's really obvious in the red Stop Staring dress.  The Trashy Diva dress fit, but the belt didn't.  They're a lot more expensive at Bygones than they are online.  The black dress was one was vintage & a good price ($19), but it was too small. 

 

They still had these gloves. 

 

 

They're cute, but I really can't shell out $14 for gloves right now

 

We ate & caught up, then went to Luxor.  I did have a bit of luck there. 

 



$1



This is handmade & the style is frumpy.  I thought it had some potential & I'm thinking of ways to alter it.  It's not great on the hanger, but once I tried it on, I decided I could work on it. 

$10



Close up of plaid

I'm thinking of shortening the sleeves & changing out the white trim for black. I'd like to add buttons or some other way to close it.  They did have a sweater clip that I liked, but it cost more than the jacket.  If they still have it the next time I go back, I'll get it. 

I had even better luck at the used bookstore.  $20 for a large bag, filled with books!  Most are in really good shape with no cracks in the spines.  I got 3 Marilyn Monroe books for my collection and 3 other old Hollywood bios.  The rest were mysteries & sci-fi.  They only have this sale once a year and I haven't had this kind of luck in the past. 

Seeing my friends was great and it was nice to forget about medical things for a while.  Now I have books & the jacket to distract myself with for a bit.

Professional Patient, Part 2

Well, my second doctors appointment didn't go as planned either.  The good news is I now know the mystery skin funk is keratosis pilaris.  There's no cure for it, but it doesn't really do anything except make my skin look gross.  I'm on the hunt for more Summer weight cardigans now to help cover it up. 

 

Blood was taken for thyroid tests and various other things.  The LPN realized that I'd been blowing my physical off for over 5 years and made me promise to come back in a week.  She looked over my diagnosis letter from the geneticist and can do some of the required tests without me having to shell out for several appointments or specialists.  I'm still not happy about it.  I really don't want to get hit with another list or sent to a ton of specialists. 

 

I also failed a mini psych eval.  Normally, I pick up on them right off, but not this time.  They usually give you a sheet of paper with some questions (usually provided by a pharmaceutical co.) and anyone can figure out how to answer them to not get put on whatever medication is advertised on the sheet.  This LPN is smart and changed the way the questions were asked.  Had I been in a better state of mind, I would have caught it.  I ended up telling her all of the bad stuff that has been going on and she was shocked.  I also started my case against going back on anti-depressants. 

 

She agreed to wait until we got the thyroid results back since that could be making it worse for me.  The Ehlers Danlos can contribute too.  I've started putting together my "case" against going back on meds.  I don't want to stay depressed, but the pills are awful.  I always gain weight and I'm already heavier than I should be.  I don't need another 10-20 lbs.  I also feel terrible when I'm on them.

 

The first time I had to take anti-depressants was a combination of a terrible work situation & a terrible husband.  I got married because I thought that's what you did when you graduated college.  He was awful.  When I started having an anxiety attack, he'd egg it on until it got so bad I blacked out.  My doctor gave me meds and sent me to several psychologists, who said it was my fault.  I tried to leave & he faked a suicide attempt, blaming me.  Somehow, I got my meds changed & he was still med free.  We were both sent to therapy and the doctor realized it wasn't me at all.  Unfortunately, he retired due to medical problems, but he did get me to the point where I could leave my ex.  He dropped a few hints since he couldn't tell me directly what was going on.  Without the unnecessary medication, my head was clear enough to figure it out.  I was depressed then, but the medication made things worse for me.  I couldn't think straight, I lost a job because of it, fought with my family & ended up stuck living with a psycho. 

 

I told the LPN some of that & she told me this situation is different & there are new medications.  I don't handle newer medications well at all.  I have a week to make my case.  I'm hoping the test results will come back with something useful that will help me avoid any horrible medications.  I try to stay positive, but it's always good to be prepared for the worst. 

 

On a happier note, tomorrow I'll be going out to eat with friends and checking out the sale at a used bookstore.  It's an outdoor shopping area and it might rain, but at least it's not going to be 100 degrees like it has been. 

Professional Patient

My pain management/back doctor appointment was more eventful than I thought it would be.  Two years ago, I had a surgical consult for back surgery.  I hurt it about 5 years ago.  I herniated the 2 discs at the bottom of my spine & when it happened, I was paralysed for 20 minutes.  It one of the scariest things that has happened to me.  The Mr was at work (no way he could leave), my family & close friends were out of town & my phone was downstairs.  I finally got off of the floor & onto the bed while debating on whether or not to call for an ambulance.  I decided not to.  Why?  I felt gross & sweating from cleaning & I was still in my jammies.  Since I had gotten to the bed and wasn't really paralysed, I decided it wasn't really that much of an emergency.  I was in a lot of pain, but I could sort of walk.  Brilliant, I know. 

 

It took a YEAR for my general practitioner to refer me to a back specialist that told me there was nothing wrong with me.  Yeah, that's why I can barely walk.  Their answer was to send me to another back specialist.  I counted it as them admitting they knew nothing.  After several cortisone shots, 2 discograms, several different pain medications, a surgical consult & a drug study, I'm still barely functioning.  I wasn't thrilled with the idea of back surgery.  It's expensive, takes months to fully recover & involves a 3-5 day hospital stay.  My insurance company & the surgeon recommended fusion.  The surgeon said he'd do the surgery if I really wanted, but he thought I was too cute to have a nasty scar (that no one would see).  I've already had several surgeries & lots of visible scars.  I really want to get a copy of the write up so I can frame, showing that my medical file actually says I'm "cute." 

 

I was hoping the surgeon would have a better option for me, so my regular back doctor & I put the surgery option on the back burner until today.  I can't have any more cortisone shots.  I've had too many already which can cause tendons to rupture in a normal person, but for someone with a connective tissue disorder, it's even more likely.  Because I'm young, they don't want to keep me on pain medication.  Thanks to the Ehlers Danlos, I'm already guaranteed to be on pain meds for life.  Doctors don't like it because you build an immunity & the doses have to increase.  It's also a huge ordeal to get refills for certain medications. 

 

He's tried everything my insurance will allow & put me in a study for something else and now surgery is back on the table.  My other option is a spinal cord stimulator.  I have plenty of time to decide what I want to do.  Both are expensive & I'm in a catch 22 situation.  I have time to recover from surgery, but no money.  If I have a job, I'll have money, but taking time off can be a problem, depending on the job.  

 

And tomorrow, thyroid testing!   

Bakelite goodies...

I've spent the last few days trying to fight off deep depression.  I tried reading, but couldn't really get into my book & I'd really been looking forward to it.  Staring off into space has occupied most of my weekend.  I finally started coming around a little Sunday night & checked the tracking number on some of my eBay purchases & saw that my bakelite bangles had been delivered Saturday.  I went downstairs and didn't see the box thinking the Mr. got the mail.  I was worried because I've had several things stolen from the mail, so I went out to check the mailbox and...

 

My bangles were in the mailbox!   

 

Anyway, here's my small collection of bakelite bangles:

 

 

I'd really like some black ones to mix in, but I always get outbid on those.  The thicker yellow one is more of a pale, buttery color.  The camera has a yellow tint for some reason.  I haven't invested too much in these.  I really like the look, but I don't get many chances to wear them.  I wear a brace on one wrist & medical ID on the other and it doesn't look right with the bakelite.  I thought about modifying a bangle into a medical ID, but it might not stand out enough.  A friend & I joke about tattooing our medical info, but then we'd have full sleeves of medical stuff & we'd be screwed if something changed. 

 

Speaking of medical stuff, I have two doctors appointments this week: pain management & tests for Hypothyroidism.  

 

I'm staying off of Etsy & eBay since I have to shell out loads of money for two appointments, my regular refills & possible new meds. 

MeltyPolska

Going out in 100 degree heat today was kind of a mistake.  I feel terrible, but I was good and didn't buy things that weren't on my list.  It really helps to get a surgery bill before going out.  It's a lot less than I expected, but still motivation to behave. 

 

I did the boring errands first, then headed to Bygones & Luxor.  I parked in the free parking deck behind Bygones & by the time I got to the corner, I had sweat dripping off of my nose.  I'm convinced I lost some weight.  I found a few dresses that I really liked, but didn't try them on because I felt gross & couldn't really buy today anyway.  I really like the fact that they've started carrying reproduction clothing even though it's so expensive.  They do have a sale section and there was a cute dress there so I can always hope for what I want going on the sale rack. 

 

I like Bygones because things are easy to find and they have nice stuff, especially the jewelry.  There was a necklace in the first case that I really, really wanted.  I didn't get a picture of it though.  I'm funny about taking pictures of things like that because I worry they think I'm casing the place for some reason.  I did get a picture of a two pairs of shoes I wanted:

 

$75

They're Aris Allen dance shoes with suede soles & not a good idea for a major "fall risk" like me.  I love the style though. 

 

They had a few bakelite bangles, but no black ones.  They did have a green one similar to the one I won yesterday & it was more than I paid for the 3 I won.  Go me! 

 

I debated on whether or not to limp down to Luxor.  The heat & humidity is draining.  I decided to go ahead since I was already there.  Luxor has no a/c, so I didn't spend a lot of time there.  They had a few bakelite bangles, but a lot of hats that I wanted. 



$22 (sorry for the terrible picture)

 

$12 (velvet?)

Those are my 2 favorites.  There was a black halo style hat with leopard print trim that I didn't get a picture of.  I forgot to check the price, too.  I couldn't try the black & yellow hat on since I had my hair up in a bandanna.  It was a tad bit out of my price range, but I might go back next weekend with a friend and see how it looks.  They also had a few bangles.  I didn't have enough cash & they weren't expensive enough to put on my card.  There was also a patent leather black, yellow & white striped belt.  It was way too small & didn't have a price. 

 

I would have liked to spend more time there, but it was too hot for me.  I picked up dinner for the Mr. then came home and tried to cool off & get the swelling down in my leg.  It's supposed to be even hotter tomorrow, so I'm glad I went down there today instead of doing it tomorrow.  The plan is to stay inside & read. 

Cabin Fever

I had my second knee surgery about a month ago and now I'm even more limited in what I can do.  It's healing well, but I still can't drive very far or be out for long.  I kind of have cabin fever and will be going out tomorrow in the 100+ degree heat.  I can't handle heat at all, but I need to get out of the house because I'm getting nutty.  I usually go to Walmart or Target since I can get what I need in one place, which is important when you have limited energy, but I really need a change of scenery.

 

One of the local vintage shops, Bygones, recently remodeled and I haven't been there in a long time.  The clothing is a bit expensive & they usually don't have larger sizes.  They do have a really good selection of accessories & have started carrying some reproduction items.  I know I won't be tempted to spend a lot of money there, but it's fun to look.  They're supposed to have some nice Bakelite pieces.  I actually won 3 on eBay this evening; a buttery yellow, thicker carved bangle, a marbled green bangle & a "root beer" bangle.  I will post pictures when I get them.  Now I'm looking for some black spacers & a carved black bangle. 

 

There's another vintage shop about a block away from Bygones that has better deals.  It's not as fancy & you really have to dig, but it's cheaper and I've had pretty good luck there in there past. 

 

As an added bonus, I have a free sammich coupon for a deli that is on that same block.  I've been saving it for an "emergency."  It's not really an emergency, but if I'm worn out from limping around and the heat, it will count.   

Intro

A few months ago, I was venting to a fellow EDSer and she suggested I start a blog. 

 

For my first post, I thought I'd post a few things about myself.  I'll start with the bad first:

 

1 - I have Ehlers Danlos Syndrome (Hypermobility type III) aka EDS.  After several years of fighting with doctors, I got a diagnosis last year.  EDS is a genetic disorder that affects the connective tissue.  There are several different types.  Almost all of my joints are loose and this causes them to wear down faster than they would if my connective tissue wasn't defective.  There's no cure & most doctors don't even know what it is.  All they can do is feed me pain meds & surgically repair things.  I'm in constant pain & use a cane or wheelchair to get around on bad days. 

 

2 - I had 3, bad major events happen within a few months of each other.  My EDS diagnosis (dx), my father dying & being laid off from my job.  I suffered from depression before, but now it's severe.  My doctors are trying to put me back on meds for it and put me into counselling.  I had bad experiences with both in the past & I can't afford to go to weekly psych sessions.  My insurance doesn't cover much and EDS is expensive enough as it is.  I'm doing what I can with what I have.

 

OK, now the light stuff...

 

3 - I'm a huge nerd.  I'm into Star Wars, comic books, bad horror & sci-fi movies.  

 

4 - I'm a very proud, but displaced Pittsburgh girl (my hair is dyed black & gold).  I go home regularly for Pirates or Penguins games.  I used to go home every weekend, but driving is now quite painful, so I've had to cut back.

 

5 - I have a weakness for vintage hats.  I got out of it for a little while because my hair was short and they didn't look right. 

 

6 - My favorite vintage periods are the 40's and some of the early 50's.  A large chunk of my vintage collection is from my family.     

 

7 - I've been a fan of Marilyn Monroe since elementary school.  It's kind of cliche.  Almost everyone is a Monroe fan.   

 

That's enough for now.  I have a tendency to ramble and I'm trying not to do that.