Disappointment...

One of my long time friends & I had planned a road trip for next month that I was really looking forward to.  Well, yesterday she told me she didn't want to go because I'm not much fun to be around since I got sick. 

 

Wow, thanks. 

 

She's worried I'll have a bad day and we'll sit around in a hotel room. 

 

I've been steadily losing friends over the past few years because I can't make it to cook outs or parties or clubbing.  I should be used to it, but we've been friends for over 10 year & this stings quite a bit.  She could have given a better excuse, like not having money or she wants to hang out with her new boyfriend. 

 

I was still dealing with a bad depressive episode yesterday so I decided to wait before replying to her.  I started feeling better today and re-read the email thinking I could have read it wrong.  Nope, but at least I'm feeling well enough to respond like an adult & not a whiny teenager. 

Accident update...

As expected, I'm in a ton of pain right now.  I have some impressive bruises, too.  It's snowing here today (a rare thing) and while it's pretty, the cold and pressure changes are making my joints ache.  Saturday was the worst.  The slightest movement caused massive amounts of pain and I haven't been able to sleep much.

 

 

I've spent the last two days laying in bed, soaking in Epsom salt, fielding phone calls & watching cheesy horror films.  The Epsom salt baths don't really seem to help much.  They're good for minor muscle pain, but not Ehlers Danlos Syndrome + accident pain.  When I do manage to fall asleep, I wake up from dreams that people are trying to rip my joints apart or jamming evil looking serrated knifes in my joints.  That's the best way to describe the pain. 

 

One positive to come out of this is my cousin is coming to visit.  My Aunt G thought it would be nice to make some food for me & have my cousin bring it down so I have someone here while the Mr. is at work.  My overly dramatic Aunt M threatened to come down as well, but we talked her out of it.  Phew!  Aunt G asked M if she'd like to make something too & M blew everything out of proportion.  She likes attention and had me added to the "Prayers for the Sick" list at Mass.  Former neighbors & other family members have been calling all day.  I'm sure by now all of Pittsburgh knows about it or at least the mutated version of what "happened."  

Manner of accident "provided" by former neighbor.



 

Valentine's Day postponed...

The Mr. normally drops the ball on Valentine's Day.  It figures the year that he actually plans things out and makes reservations at one of my favorite restaurants, I get the most horrible migraine.  I couldn't even eat my chocolates.

 

It started Sunday & was mostly gone Monday.  It returned in greater force on Tuesday (and stayed until Thursday) and some lucky person scored our dinner reservation.  The good news is I had a doctor appointment Friday & I'm getting my MRI on Tuesday.  Now I'll find out if this is a Chiari Malformation or a massive nerve disorder.    



This is what I was going to wear to dinner.

We were waiting to reschedule dinner to make sure the migraine doesn't come back again, but after my appointment I went to the mall to get a new garter belt (which no one had) and ended up getting hit by a car .  The girl backed into me, but I ended up bouncing between her car and mine.  She was 16 and talking on her phone.  She panicked and took off, but a police officer happened to be sitting in the parking lot and saw everything & caught her (she didn't get far).  I know she was charged with Hit & Run, but I think there was at least one more charge.

 

My car is OK, but I'm not.  I ended up with a sprained ankle, new dislocated ribs, dislocated pubic bone, torn tendons in my wrist & lots of bruises.  If I didn't have Ehlers Danlos, I probably would have walked away with a few bruises and some sore muscles.  It could have been much worse, so I still consider myself lucky. 

Hair yet again...

I did get my hair cut a few weeks ago.  It's not quite how I wanted it and it took me a week to convince myself that it wasn't as much of a "soccer mom" style as I thought it was.  The husband said he liked it, but I think he was doing the "I'm supposed to notice when the Mrs. changes her hair & compliment it" thing.  Once I got home and started styling it, I realized that it will work.  Victory rolls are much easier to do & it's much easier to put curlers in. 

 

Now that my arms have healed a bit, I'm playing with the color and I had a very nice magenta color.

 

 

Then I decided to try to make it more purple.  It ended up more orange (don't ask), so I'm trying to put it back the way it was.  Oops.  I'm pretty good with hair color, but every now and then, I mess up.  I've had offers by salons to work there dying people's hair, but I'd still need a license.  I debated doing that a few months after I became unemployed, but it doesn't look like I'll be rejoining the working world. 

Tumblr...

I've been spending a lot of time on tumblr lately & decided to start a "blog" there in addition to this one.  I've added a button in the sidebar.

Right now it's a mix of vintage, comic books & other random stuff.  I've been updating that more often than this one because I really don't have much to write about these days.  I do have a lot of photos though!

Please check it out!

I need my own charity...

Having a chronic illness is expensive.  I do have insurance, but they only cover so much.  Today ButYouDontLookSick.com posted a link to GiveForward.com, which is similar to Kickstarter.com, but for medical bills.

 

I've seen other people that blog about their medical issues with donation buttons on the side of their blogs and I've debated doing that as well.  My biggest issue is that I was raised not to whine about my problems to strangers (or even most family) or to ask for money.  I have a hard enough time letting my friends pay for my lunch, much less asking strangers to donate for my medical needs.

 

On the other hand, the list of surgeries/procedures/tests/devices I need is getting longer and the things I've been pushing off are getting to the point where I can't push them off much longer.

 

Right now I need:

 

Ligament repair (right knee), new braces, MRI to confirm CIPD or Chiari Malformation then surgery to fix it if possible, two rotator cuff repairs, two ankle fusions or ligament reconstruction, ligament repair in my right thumb, gum reconstruction, spinal fusion or spinal cord stimulator, surgical mesh replacement & they need to clean out the arthritis/cartilage tears in my hip & maybe tighten the joint.

 

I'm also having major issues with collar bones, ribs & my sternum dislocating.  Yes, this can happen and it can be quite painful.  I don't know what they can do to fix this, maybe fusion? 

 

The hardest one for me to face is I may need to buy a wheelchair much sooner than later.  I have to have an ultra light model due to the Ehlers Danlos. 

 

So, is it tacky for someone with an incurable chronic illness to set up a donation site for themselves?  Would you do this?

From Photoplay April 1923...

Yes, for only $2.35, you can own this, um, "beautiful California electric boudoir lamp."

Some people love stuff like this, but I wouldn't be able to sleep with this in the same room.

I have random ads & articles from old magazines & newspapers that I might start posting every so often.