My Journey With:

Hypermobile Ehlers-Danlos Syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Saturday, April 30, 2011

30 Day Photo Challenge Day 14

Day 14 - A picture of someone you could never imagine your life without


♥ my Jim!

Friday, April 29, 2011

30 Day Photo Challenge Day 13

Day 13 - A picture of your favorite band or artist


Because I think posting one picture is boring, I am going to post my top ten bands or artists, in no particular order.


Madonna - my high school crush!








Elvis - The King will live forever in our hearts!








P!ink - I have the hugest crush on her!








Peter, Paul, and Mary - One of my favorite bands ever!








Rod Stewart - Do Ya Think I'm Sexy?








Carpenters - I love Karen, I almost cry when I think about how she passed on!







Melissa Ethridge - I love Melissa, plus she's for gay rights!









Uh Huh Her - I got a text message from Leisha and Camila, only one of the coolest lesbian duos ever, once in a contest!








Kid Rock - skanky but an awesome artist!








Chely Wright - my favorite country singer is now an out lesbian! :-)



Last day of Physical Therapy

I have now completed my two months of physical therapy.  I was in too much pain to do anything today in the gym, but she did a lot of indirect releases and some massage on my neck.  I feel a lot better as far as pain goes.  It is no coincidence that the weather outside is sunny, springtime weather.  We had days of rain which translates into days of pain.  I took a nap today and it helped even more.  The fatigue gets as bad as the pain, but it didn't used to.  I'm nervous about physical therapy ending.  I want to keep moving forward, but my EDS will only let me move so far ahead before it just won't let me anymore.  I have pen pal letters I've been trying to write for days, but I keep injuring myself after only writing half a letter.  Then I have to wait for the injury to heal until I can type long enough for a letter.  It's quite annoying!  I wanted to share this picture.  I put the words on, and found the picture of the rainy day on Photobucket.

Rainy days are painful days when you have chronic pain
Very true!

Thursday, April 28, 2011

Made appointment with cardiologist

Today I made my appointment with my cardiologist for my follow up.  I also made my appointment for my endocrinologist follow up and requested a new script for blood work. I was a little surprised to learn that I haven't been to my endo since 2009.  Once I go to the cardiologist the next day I plan to start on the search for an answer to my mystery dx, starting with finding a neurologist familiar with Chiari.  I don't want to think about it too much right now.  As for the moment, I'm proud of myself for making the appointments.

Just to make you smile ;-)

30 Day Photo Challenge Days 9,10,11, & 12

Monday
Day 09 - A picture of the person who has gotten you through the most


The Virgin Mary, who I believe is an incarnation of the Goddess






Tuesday
Day 10 - A picture of the person you do the most ****** up things with


I only do effed up things with my joints!





Wednesday
Day 11 - A picture of something you hate


Female Genital Mutilation (FGM) is incredibly too common, even here in the USA

How can anyone can do this to a little girl?  It is beyond scary and sad.






Thursday
Day 12 - A picture of something you love


Les Demoiselles d'Avignon by Pablo Picasso

Sunday, April 24, 2011

30 Day Photo Challenge Day 7 & 8

Day 07 - A picture of your most treasured item



This is my laptop I decorated.  I spilled coffee on her and she is currently under the couch, ready to be taken to Staples to see if she will get to ever be normal again.  I'm mourning her loss already!




Day 08 - A picture that makes you laugh


I decided to use Easter pictures that make me laugh.  Happy Easter!!!










Friday, April 22, 2011

30 Day Photo Challenge Day 6

Day 06 - A picture of a person cat you'd love to trade places with for a day






This is my kitty, Niki.  She is 19 months old, wild, and crazy.  She has a million toys that she plays with and loves to be held, snuggled, played with, scratched on her face, and petted.  I would love to be Niki for a day!  She always sticks her nose in everything, whether its a bag you just brought home, a drawer, or an envelope (yes, and envelope).  It looks like so much fun!  I would love to be Niki for a day!

Thursday, April 21, 2011

30 Day Photo Challenge Day 5

Day 05 - A picture of your favorite memory






My favorite memory is the week DH and I spent in St. James before we moved my stuff up here.  This picture is from that week.  It was taken during our first month together.  

Wednesday, April 20, 2011

30 Day Photo Challenge Day 4

Day 04 - A picture of your night




This is my arm.  I drew on it tonight.  In the middle of the flower is a bruise that is going away (pesky EDS!).  I turned the bruise into a pretty spring picture! :-)  

Happy post time!

I decided to do a happy post even though I will be doing a 30 Day Photo Challenge entry as well.  So, for this week my happy post is an Onion video that makes me laugh every time I watch it.



Tuesday, April 19, 2011

30 Day Photo Challenge Day 3

Day 03 - A picture of the cast from your favorite show


I want to make this one a little more interesting, so I'm going to put cast pictures of my top ten favorite shows in no particular order: "Reno 911," "The L Word," "South Park," "Family Guy," "The Golden Girls," "Bad Girls," "My Name is Earl," "Will & Grace," "Bones," and "Charmed."




"Reno 911"


My favorite thing about the show: it makes me laugh so hard I cry
My favorite character: Sheriff Dangle and Terry, the funny gay prostitute meth addict
My favorite scene in the show: when Terry was arrested for giving handjobs at the stoplight for $5 a "job"
"Reno 911" Official Website




"The L Word"


My favorite thing about the show: it's a lesbian soap opera--there aren't many shows revolving around lesbians for lesbians and NOT for a male's porn fantasy
My favorite character: Tina
My favorite scene in the show: There are so many!  I guess I'd have to go with the first time Bette and Tina tried to get pregnant.  It was both sexy and funny.





"South Park"

My favorite thing about the show: I laugh really hard and the topics are sometimes so lewd sometimes I can't believe I think it's funny, but I do
My favorite character: Kyle
My favorite scene in the show: When Cartmen fights the little person, that he calls a midget





"Family Guy"


My favorite thing about the show: It's hilarious and has a ton of guest stars
My favorite character: Peter
My favorite scene in the show: either the "Bag of Weed" song or the time Stewie played banjo while singing when the Griffins were temporarily living down south





"The Golden Girls"



My favorite thing about the show: the characters and their friendship...and let's not forget late nights with cheesecake!
My favorite character: Rose and Blanche
My favorite scene in the show: when Rose finds out you can shave above your knee





"Bad Girls"


My favorite thing about the show: the strong lesbian characters in the show
My favorite character: Yvonne and the two Julies
My favorite scene in the show: when Nikki and Helen finally get to spend the night together






"My Name is Earl"



My favorite thing about the show: it reminds me of my hometown
My favorite character: Randy because he's so sweet and simple and Joy because she reminds me of my cousin
My favorite scene in the show: when Randy followed Catalina to Mexico





"Will & Grace"



My favorite thing about the show: it's hilarious and a great show to watch before you fall asleep.  I love that it has gay main characters
My favorite character: Grace
My favorite scene in the show: when Grace goes on a "date" with her creepy upstairs neighbor who steals her laundry





"Bones"



My favorite thing about the show: I love the intellectual element along with the humor and crime solving. I also love medical shows, excluding "House."
My favorite character: Bones and Angela (whom I have a big crush on!)
My favorite scene in the show: When Booth is rescued off an abandoned ship set to explode by the ghost of a soldier he tried to save.  It gave me chill bumps!



"Charmed"



My favorite thing about the show: it's about awesome witches who save the world. Need I say more?
My favorite character: Phoebe
My favorite scene in the show: When Leo gets better (after almost dying again) after a demon is vanquished and Piper cries for thanksgiving and happiness to have the love of her life back


Monday, April 18, 2011

30 Day Photo Challenge Day 2

Day 02 - A picture of you and the person you have been closest with the longest




This is me (on the right) with my best friend Om.  We met when we worked together at Briggs & Stratton in 1999.  We hit it off and right away became shopping buddies.  Om is my best friend (other than DH) in the whole wide world.  She is awesome.  She's a loyal friend, a great mom to her kids, and a wonderful wife to her hubby.  She is someone anyone would be honored to have as a friend.

Sunday, April 17, 2011

30 Day Photo Challenge Day 1

Day 1: A picture of yourself with ten facts



Here are my ten facts.  I am tying to make them interesting. ;-)


1)  I can put my feet behind my head because EDS makes me a contortionist. 


2)  I love animals a lot more than most people.


3)  My dream is to get better enough to volunteer one day a week.  My fingers are crossed.  I just don't know where I'd volunteer here.  I think it's important to have goals regardless if we can physically meet them.


4)  Christmas is my absolute very favorite holiday and I torture DH all season with holiday music, mainly from the 1940s.


5)  I fly into a murderous rage when someone dog ears my book pages or breaks the bindings.  I believe books should be treated with respect!


6)  I am afraid of the day books are no longer made.  At that point I think I want to die.  I'm serious.


7)  I'm really attracted to a woman with strong shoulders.  That brings me to another one some of you may not know...


8)  I self identify as a lesbian, yet somehow, shortly after coming out, I feel in love with DH in spite of his gender.  DH is my soulmate.  I love him very much, regardless of the fact that he's a man.


9)  In my past life I was a tunnel rat that died in Vietnam.


10)  We have a "cat tree" in our living room.  It used to be the Christmas tree but our kitty with the Buddah belly destroyed it.  We took all the nice ornaments off and she uses it as her biggest cat toy.  We are both wrapped around these two kitties' paws!

30 Day Photo Challenge

I have decided to participate in the 30 day photo challenge.  I have seen it on quite a few blogs, most recently this one.  I'm going to be starting tomorrow, so I'm already thinking about what pictures I'll be using for the 30 day challenge.  I encourage my readers to also participate in the 30 Day Photo Challenge on their blog and link back to me.  I start tomorrow!


Day 01 - A picture of yourself with ten facts

Day 02 - A picture of you and the person you have been closest with the longest

Day 03 - A picture of the cast from your favorite show

Day 04 - A picture of your night

Day 05 - A picture of your favorite memory

Day 06 - A picture of a person you'd love to trade places with for a day

Day 07 - A picture of your most treasured item

Day 08 - A picture that makes you laugh

Day 09 - A picture of the person who has gotten you through the most

Day 10 - A picture of the person you do the most ****** up things with

Day 11 - A picture of something you hate

Day 12 - A picture of something you love

Day 13 - A picture of your favorite band or artist

Day 14 - A picture of someone you could never imagine your life without

Day 15 - A picture of something you want to do before you die

Day 16 - A picture of someone who inspires you

Day 17 - A picture of something that has made a huge impact on your life recently

Day 18 - A picture of your biggest insecurity

Day 19 - A picture and a letter

Day 20 - A picture of somewhere you'd love to travel

Day 21 - A picture of something you wish you could forget

Day 22 - A picture of something you wish you were better at

Day 23 - A picture of your favorite book

Day 24 - A picture of something you wish you could change

Day 25 - A picture of your day

Day 26 - A picture of something that means a lot to you

Day 27 - A picture of yourself and a family member

Day 28 - A picture of something you're afraid of

Day 29 - A picture that can always make you smile

Day 30 - A picture of someone you miss.

Friday, April 15, 2011

BAM! Stopped by seizures again


This morning we woke up to go to physical therapy when DH started seizing.  Most of the time he doesn't have seizures in the morning, but since he did this morning.  I absolutely refuse to leave DH right after he has a seizure, so I called in to the PT office.  They were very friendly and are already aware of DH's epilepsy.

For those of you who have never had a seizure before, it's really frightening.  It's not funny, and it certainly isn't anything to laugh at.  After my first tonic clonic seizure (used to be called grand mal) I was made fun of by other adults.  Someone cannot help it when they have a seizure.  Seizures are not contagious and you cannot swallow your tongue.  It is physically impossible. Try it.  See?  It really can't be done.

I want to go over a little seizure first aid so that my readers can be informed.  You may be able to help someone having a seizure after reading this.  It isn't hard and it is really, really important.  I've seen people walk off as fast as they could when DH goes down and into a seizure.  Instead of asking how they can help or even hanging back in case help is needed, they flee.  I hope they are happy being selfish, heartless, cowards.  I mean I personally couldn't look myself in the mirror if I was that type of person, but hey, to each their own.

This is a flier I scanned from my neuro's office.


These are the most important points to remember:

  • Make sure the person doesn't hit their head.
  • Make sure the person is on their side, they are less likely to hurt themselves or choke on vomit (if they vomit).
  • If you don't know if someone has epilepsy and they do not have medical jewelery on call 911.
  • If the person is able to talk and refuses to see an ambulance, listen to them. They may not be able to afford it.
  • If the seizure is over 5 minutes long or there are multiple seizures without regaining consciousness in between call 911.
  • Remove the person's glasses, for obvious reasons.
  • If the person having the seizure is pregnant, call 911.
  • Once again, it is impossible to swallow your tongue.  This is an old wive's tale, urban legend, whatever you want to call it, but it's not possible to swallow your tongue.

Thursday, April 14, 2011

Happy post time!

Well, today I'm bringing you the happy post I mentioned before, and guess what?  It's interactive!  For this blog post I am depending on my readers to leave comments.  Read on and you'll see why.



I was walking down the street when a magical fairy tale princess gave me a check for one million dollars.  Of course, I immediately cashed my fairy tale check at The Not-so-nice Stepsisters' National Bank.  I find myself wondering, though...what would I do with my one million dollars?  These are my ideas:

$   500  Old Navy & Kmart--clothes for me & DH
75,000 EDS Research
10,000 to move out of state (yippee!)
25,000 nice down payment on a house!
 10,000 put some away for my sister
25,000 put away for having a baby/child
25,000 child's college fund
20,000 should cover every bill and then some!
20,000 split between my brother-in-laws
45,000 to go towards building & maintaining proper shelters for the homeless here in town
10,000  two 5K scholarships for disabled low-income students from the high school I went to
10,000  on converting a room in our new house into a library & filling it in with even more books
10,000 electronics
20,000 split four ways between DH and mine best friends

...this is harder than it looks.  I still haven't spent all my enchanted princess money!  So, blog reader, your mission, should you chose to accept it...is to write out some of the things you would buy with a million dollars given to you by a magical fairy tale princess.  On your ready.  Get start.  Go!

Thursday, April 7, 2011

Fireflies, fibromyalgia, & hippies

Today is not a good day as far as pain and fatigue go.  I had a recertification visit by the place that provides my home health care.  I don't know why I get so nervous about things like that, but I do.  My heart was beating hard in my chest and my arms were going numb.  When she left my adrenaline levels dropped and I almost dropped into a deep sleep.  After a physical stress reaction like that I often have to go to bed and sleep for a few hours.  I know it has a lot to do with anxiety and feeling intimidated by pretty much everyone, but it didn't stop me from feeling crappy.

I am thinking about doing a giveaway soon on this blog.  A (very successful) blogger friend suggested I approach a company and ask if they want to participate in my giveaway.  Does anyone have any ideas on who they'd like to see me ask or what type of stuff they'd like to see in a giveaway?  I'd like it to be something relating to this blog's themes, but I want to hear any ideas.

I've decided to start doing one "happy post" a week.  I am going to try to write in this blog daily or almost daily as well.  Looking over my blog entries I thought that a weekly "happy post" would be a fun tradition to start.  I'm not really sure if the word tradition can apply to a blog, but if it can't I think my meaning is still conveyed.  My "happy post" for this week was a video and song called "The Hippie Song."  If that doesn't make one crack a smile I don't know what will! :-)

We've got a problem with ants getting into the house.  We've had this problem since we've moved in.  Spring and summer roll around and ants roll on in.  We also get lady bugs and lightning bugs, believe it or not.  I have no idea how they keep getting in.  We've tried every remedy possible, but that won't harm our cats if they get into it.  They may disappear for a few days but then the buggers are back again in full force.  It's strange laying in bed and seeing a bug light up across the room.  We usually catch the lightning bugs before the kitties get to them and let them go outside.  They make me miss the innocence of being very small and happy.  I was not a happy child, but catching lightning bugs was always a game my sister and I played and loved.

Wednesday, April 6, 2011

Smile :-)

Another stressful, pain filled day

Today has been a really achy day, with heaviness in my legs (more so than usual) and the sensation of swelling, though they don't look swollen.  The dull ache ranges from "I really, really hurt!" to "I'm biting my lip to try to not scream I hurt so bad."  I hate days like these, but my legs have been giving me problems for the last three months.  It started gradually, so I didn't really notice it until it was already giving me a lot of pain and heaviness in my legs.  I am losing weight (eight pounds lost so far) and I hope that will help my leg pain/heaviness.  It's slow going, though.  I've been working on it since January.  I haven't been weighed in a few weeks because my scale needs a battery.  I've been going by doctor's scales because of that, but I'd like to be able to weigh myself at home more often.

Today was an especially stressful day, and tomorrow's forecast is more of the same.  I have to be up early tomorrow for my physical therapist. I am going to try to remember to ask her about the heaviness in my legs.

I talked to a friend, a fellow EDSer, on facebook last night.  We decided to be each other's cheerleaders to get to the doctor.  When you have to spend what seems like half your life at the doctor's office you start really hating going to the doctor, if you didn't hate it enough before.  My first goal is to call my cardiologist and actually get my butt to University Hospital so that I can get the results of my TTT (Tilt Table Test) and my electrocardiograph.  I drew a string around my finger once, but forgot why it was there.  I hope that if I blog tomorrow and look back at today's blog I can remember to call my cardiologist.  Hopefully nothing is wrong that I didn't already know about.  I have a good feeling, I think everything is normal.  I don't think I have Dysautonomia, though Dr. W seems to think that from my symptoms I do.  I just have a feeling everything is okay.

I joined a site called Chiari - Online Support Group for Patients Affected with Chiari the other day.  Everyone on the site has been so nice and supportive.  I would like an MRI to be tested for Chiari but first I have to find a competent neurologist, because my current one certainly isn't in my opinion.  He's a nice guy until he runs out of patience, but I don't feel that he knows very much--and his patience is pretty short.

It's past one o'clock in the morning, so I think I'm going to go to bed, especially since I have PT tomorrow morning.  Yawn!


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