My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling With Psychotic Features ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ High Cholesterol

Sunday, May 22, 2011

Happy Post: Bibliophile!

I'm home all the time so I have a lot of time to read.  I read mostly at night; often I read all night.  I got half of my books from  It's an awesome site where you trade books for free.  I send a book to someone and I get a point.  Then I get a book from someone else and they get a point.  The website explains it better!  Here are my books:

I was in a lot of pain, so a few of the pictures are crooked.  If you are interested in Paperbackswap, use the links from my page by clicking the banner in this post or on my blog design.

Trade Books for Free - PaperBack Swap.

Thursday, May 19, 2011

Pain Journal: Week of Thurs May 12 to Wed May 18

Wake - pain too bad to get up for 1 hour after waking 8/10
Afternoon 4:30 pm - rectal pain, leg, shoulder, neck, back, hips pain, headache 7/10
Evening 6:16 pm - 7/10
Nighttime 10:00 pm - ice on neck, laid down, and crying 8/10

Wake - very stiff, legs especially painful, brain fog
Afternoon 12:45 pm - severe neck pain, Biofreeze on neck, drank 1 ginger tea 8/10
Late Afternoon - very severe neck pain, ice, laid down, 9/10

Wake - stiff, legs hurt, neck hurts, especially when I turn my head 7/10
Evening 5:15 pm - after nap back, between shoulder blades, arms hurt 6/10

Worst 5:00 pm - pain in shoulders, arms, neck severe, ginger tea, tramadol, biofreeze, quick dissolve aspirin, went to nap 9/10
After nap 9:30 pm - 6/10
Supper 12 midnight - 7/10
1 toe dislocation

Wake - very stiff, thighs, knees, calves, hips, feet, ankles, toes hurt *missed last night's meds 8/10
took nap today
coughed and saw stars
1 toe dislocation for at least 4 hours before I noticed it at bedtime when I took my socks off

Wake - slept on left shoulder wrong (with it above my head), pain in both shoulders, legs, upper & mid back, radiating down arms 8/10
Afternoon 2:11 pm - spasms in back, mid-back is worst and upper back spasm 7/10
Afternoon 2:19 pm - head is radiating pain from neck, mid-back, shoulders, upper back, vaginal pain 8/10
Afternoon 2:23 pm - blacking out from pain, losing consciousness, 10/10
Bedtime - 8/10 to 9/10
in bed from 2:19 pm until the rest of the night, couldn't move from pain and fatigue

Wake - hurt all over, almost a 9/10, but barely still 8/10
Afternoon 2:37 pm - neck, legs, back, hands, arms, breasts, headache 8/10
Afternoon 3:14 pm - all over pain, vaginal pain, very bad, could be worse 8/10
Evening 6:22 pm - 9/10
Evening 8:17 pm -  after nap 8/10
Bedtime 11:45 pm - neck, ankle, knee, elbow, shoulders, wrists, mid-back, arms, lower & upper back 8/10

Wednesday, May 18, 2011

30 Day Photo Challenge Day 28, 29, 30

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

I'm scared of lightning, thunder, and tornadoes!

ay 29 - A picture that can always make you smile

Me at age 3 with a Kool-Aid mustache with my babies Lacey (left) and Chrissy (right)

Day 30 - A picture of someone you miss.

This is me (right) on my 8th birthday. I miss my cousin Casey (middle) and most of all my sister (left).

Friday, May 13, 2011

30 Day Photo Challenge Day 25, 26, & 27

Day 25 - A picture of your day

My camera batteries are dead, so I'm going to have to post a picture of a day when I felt similar and some pictures that remind me of today.

It's another flare day

My neck hurt so bad today--severe pain

My overall day is likened to "Guernica" by Pablo Picasso

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

It means a lot to me to bring Fibromyalgia Awareness to people who have misunderstood or have not heard of what fibromyalgia is and how incredible the need for a cure is.

Day 27 - A picture of yourself and a family member

DH and I when we first got together. I was in so much pain I could barely stand up but I hid it well.

Tuesday, May 10, 2011

Of course that makes me Superwoman!

Guess what, guess what I did?  I cleaned my desk!  I never would have been able to do that before, so something like this is a huge victory for me!  It's also a victory for my desk, trust me.  Now I'm going to show you a scary picture of "before" and a beautiful picture of "after."  Keep in mind that my home health aide doesn't touch my desk or any clutter for that matter, and she doesn't dust.  In fact, she piles stuff on my desk.  This will happen no more!  It took me three days to do this 20 minutes at a time, with breaks, then back to work, but I did it!  Okay I promised you pictures so here goes....


I am really, really proud of myself.  I'm in pain, but not no where near bad as before PT.  I feel I owe a lot to my awesome physical therapist I had, Alice, who is a Mayo Clinic graduate.  Thanks Alice, you made me kick ass again!  

30 Day Photo Challenge Day 23 & 24

Day 23 - A picture of your favorite book

Winter of Magic's Return by Pamela F. Service
My favorite book from childhood. From this book I learned that there is hope in the world, that magic is real, that life isn't linear but circular, and real friendship was still possible in a world that I had no hope in at the time (before I read the book).  I was Catholic for years, but I believed in magic since I was ten and read that book. 

Deathly Hallows, Harry Potter Book 7 by J.K. Rowling
This is my favorite book as an adult.  I love Harry Potter.  He represents friendships that are so very real and friends that are so close to one another, as well as magic.  I read the book the day it came out, and I didn't move until I was done with the book.

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

I wish I could cook again!  I miss cooking and baking so much!  It sucks being so sick you can't cook or bake!

Sunday, May 8, 2011

30 Day Photo Challenge Day 22

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


Happy Mother's Day to all the Moms out there!

Saturday, May 7, 2011

30 Day Photo Challenge Day 20 & 21

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

A picture of  a castle in Cardiff, Wales 
I would love, love, love to visit Wales someday!

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

Me, 2 years ago in the ER after having 9 seizures in 20 minutes. I had a 10th shortly after this picture was taken.
After having so many seizures I was admitted to the hospital for three days.  My seizures aren't as often anymore, though in the last two days I've had two seizures, after going two months without any.  My DH also has epilepsy, and his is much worse than mine is now.

Thursday, May 5, 2011

30 Day Photo Challenge Day 18 & 19

Day 18 - A picture of your biggest insecurity

Day 19 - A picture and a letter

I'm actually not sure what this one means.  I took a picture of some of my pen pal's letters and covered my address in cute little hearts.

Pen pal letters
The off white envelope with a floral frame is from my pen pal Francesca in Italia (what we call Italy), the brown one is from JĂșlia in Brasil (what we spell Brazil here in the USA), and the blue one with duckies on it is from Violet in Germany.

Tuesday, May 3, 2011

30 Day Photo Challenge Day 16 & 17

Day 16 - A picture of someone who inspires you

Linda Lowen
Linda Lowen inspires me because she is an accomplished journalist and feminist.  She is the guide on's Women's Issues site.  She has inspired me to go back to grad school to get my Masters in Professional Writing.  If you are reading this, Linda, thank you for the inspiration!

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

Rollator Walker with seat
My walker has given me something I haven't had in a year - freedom!  I can now walk around using my walker, and with a seat to rest on when I'm too tired or in too much pain to continue walking, I have so much more freedom than before.  Being able to walk around even in the store again feels amazing!

Thinking too much

I have been thinking lately, on who each of us are to different people in our lives.  I don't necessarily mean that we are all liars, but that we still show a different facet of who we are to different people.  For instance, I feel I am being myself almost all of the time on Twitter and Facebook, and the majority of the time with my best friends in person.  I am the most honest on my feelings on my blogs.  If I have personal reflections to make often I will choose to write it in my blog.  I put my fears, passions, and drive into my blogs.  On Twitter I tweet about my views on the abortion debate, politics, religion, fibromyalgia, being a spoonie, and I tweet with a few EDSers.  On Facebook I'm very involved in the EDS community and have made quite a few close friends.  I don't discuss religion at length or politics at length on Facebook, though I do post some links occasionally.  I just show a slightly different faucet of myself to different people.  That was the first example that came to mind that fit the situation I'm describing.

What I find slightly disconcerting is that my loyal blog readers know a lot about me that my best friends don't.  Neither of my best friends know that I'm not straight.  Neither of my best friends know that I'm not Christian.  My sexual orientation colors how I look at the world, as does my religion, but I don't feel I can tell my best friends these things about me.  I did finally get M to stop sending me anti-gay petitions.  M is very, very Evangelical Christian and does not like gays or non-Christians.  I hate having to hide part of myself from her.  Because of this, my friendship with her has, well, been kind of on the quiet end lately.  I'm also used to being out now, and I'm afraid I'd slip and say something.  Would she still be my friend if I did?

If I told O then she would tell me I'm just confused because I'm with a man now.  I am the only one who knows what MY sexual orientation is, and it gets old defending it.  Granted, I haven't told her, but I'm pretty sure she'd just say I was confused.

I don't know.  Sometimes it just depresses me that the people I love most, O and M, I cannot be myself around.  I wonder though, do we all do that?  Do we all hide something as big as sexual orientation and religion from our best friends but let the rest of the world know?  Is that tacky or prudent?

I guess I'm just rambling, but sometimes this stuff bothers me a lot.  Please do not comment that if O and M were friends they wouldn't care.  O and M, especially M, are hardcore Christians, and they see these things as "amoral."  I'm not going to convince them otherwise, so please, no comments like that.

Sunday, May 1, 2011

30 Day Photo Challenge Day 15

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

I want to see a lighthouse, preferably on as stormy day as well as a clear day.


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