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, July 31, 2011

Lists and lists (semi-fun post)

1. My darling husband ;-)
2. Our Sterling kitty
3. Our Niki kitty
4. The thought of going to grad school online this fall
5. Getting letters in the mail
6. Getting postcards in the mail
7. Waking up to Jim's smile and Sterling's kitty kisses
8. Getting books in the mail
9. New stickers
10. New teas

1. Chew ice in a waiting room
2. Cough on me
3. Mess with Jim or the kitties
4. Self pity all the time because you know I'll try to pump you up
5. Destroy my books (aka favorite possessions) 
6. Doubt my pain
7. Mess with my friends
8. Make fun of poor people
9. Make fun of disabled people
10. Yell a lot 

1. When Jim and I first met
2. Lying outside in the grass with Jim in St. James
3. My "biggest birthday card" cut into the lawn from Daddy
4. Getting Niki
5. Getting Togy
6. Meeting Sterling and seeing the way him and Jim looked at each other
7. The moment I knew Jim and I would be a Mommy and Daddy someday (no, we aren't trying yet)
8. The last time I saw my Grandpa on Christmas 2007
9. Spending Christmas 2005 on Grandpa's farm
10. Go swimming with my Daddy and sister

1. My Daddy telling me he'll see me next on a slab in the morgue (not the best parenting attempt, hmm?)
2. Being in the dorms in quad at UMR back in high school
3. Engineering summer camp in high school
4. When my Daddy kicked my door open
5. When I was beaten by a 13 year old boy bigger than me with violent outbursts & severe mental health issues
6. When my mom broke in my house and stole my journals
7. The last time I saw Togy on November 5th, 2007
8. The last time I went to breakfast with my sister and she said she never wanted to see me again
9. My landlord threatening to rape me after my parents told him I was a whore (I am not, by the way)
10. Being beaten by three boys in the front yard and then yelled at by my parents because they "had to watch me being beaten" and it "hurt them so much to watch that"

1. Harry Potter and the Deathly Hallows by JK Rowling
2. 1984 by George Orwell
3. Queen of Camelot by Nancy McKenzie
4. My Sister's Keeper by Jodi Picoult
5. Magic Hour by Kristin Hannah
6. Winter of Magic's Return by Pamela F. Service
7. A String in the Harp by Nancy Bond
8. Rosemary's Baby by Ira Levin
9. The Christmas Carol by Charles Dickens
10. "Abby & Ophelia" series by Shirley Damsgaard

1. When I was harassed by a very bad person from my past alone after dark on campus at UMR
2. When Togy was very matted and I was afraid that made me a bad dog mommy since I couldn't emotional handle to didn't go to my parents every day to brush him :-(( 
3. When my mom had thyroid surgery and was very sick
4. When I found out I had a cyst on my pituitary gland (I later found out it's normal to and it went away as well)
5. When I got the call that my EEG wasn't normal
6. When Jim and I had our first fight (I was so scared he'd quit loving me, but he reassured me that would never happen)
7. When the police threatened to arrest us if Tiffany called the police on us again (She was a squatter in our home and we told her to leave. In my county if you've been in a home 24 hours you are a legal resident.  Fucking stupid.  Read about Tiffany and the summer of hell here and here.)
8. When I found out my aunt Gloria had cancer (both times)
9. When people broke into our house while we were in bed in our pajamas to hide from the police (Jim told them get out or he's bringing the policeman inside to get them out, which is what we ended up doing)
10. When I was in the ICU with the prognosis of death or liver failure and only let two people know because I didn't want to worry anyone (and those two people didn't call once to check on me)

1. Disney's Beauty and the Beast
2. Disney's Aladdin
3. Harry Potter and the Sorcerer's Stone
4. Walk Hard: The Dewey Cox Story
5. Star Wars: The Empire Strikes Back
6. Disney's Mickey's Christmas Carol
7. The original cartoon The Grinch
8. Kissing Jessica Stein
9. Napoleon Dynamite
10. Bound

1. "Born This Way" by Lady Gaga
2. "Rehab" by Amy Winehouse
3. "Like a Virgin" by Madonna
4. "Turn, Turn, Turn" by The Byrds
5. "Where Have All The Flowers Gone?" Peter, Paul, and Mary
6. "I Kissed a Girl" by Katy Perry
7. "Are You Lonesome Tonight?" by Elvis Presley
8. "Don't Cry Daddy" by Elvis Presley
9. "In the Ghetto" by Elvis Presley
10. "I Got You Babe" by Sonny and Cher

1. Gay rights
2. Reproductive rights
3. Penal reform
4. Medical marijuana
5. Fibromyalgia and Ehlers-Danlos Syndrome Awareness
6. Feminism
7. Child abuse
8. Domestic violence (violence against women and men)
9. The evils of anti-gay "reparative therapy"
10. Animal abuse

1. Roaches
2. Slugs
3. Poop (yes, I am totally creeped out by poop, but strangely enough gobs of pus don't gross me out at all)
4. People who follow religious leaders or political leaders blindly with no thoughts of their own
5. Frogs and toads (especially bullfrogs)
6. Snakes (I'm such a little girl! lol)
7. When I walk into a spider web
8. Dracula by Bram Stoker
9. Something Wicked This Way Comes by Ray Bradbury
10. When people share a toothbrush

1. Money worries
2. Planning the next day
3. Reading all night ;-)
4. Facebook and Twitter
5. Jim's snores
6. Any light
7. Songs stuck in my head
8. Nightmares
9. Flashbacks (which is a guarantee if you fall asleep you'll have nightmares)
10. Things I should have said/shouldn't have said

1. "The Scream" by Edvard Munch
2. "Les Demoiselles d'Avignon (The Young Ladies of Avignon)" by Pablo Picasso 
3. "Guernica" by Pablo Picasso
4. "The Lovers" by René Magritte
5. "Persistance of Memory" by Salvador Dali
6. "Starry Night" by Vincent van Gogh
7. "Self-portrait with Bandaged Ear" by Vincent van Gogh
8. Kent State Shootings by John Filo
9. "My Sweet Rose (a.k.a 'The Soul of a Rose')" by John William Waterhouse
10. "Lady of Shalott" by John William Waterhouse 

1. Megan Fox
2. Jodie Foster
3. Lady Gaga
4. Katy Perry
5. Elvis Presley
6. Chely Wright
7. Ellen DeGeneres
8. Santa Claus
9. Vincent Price
10. John Astin

1. Angelina Jolie
2. Brad Pitt
3. Rush Limgaugh
4. Dom DeLuise
5. Suzanne Somers
6. Dr. Phil
7. Dr. Oz
8. Dr. Dobson from the anti-gay hate group Focus on the Family
9. Oprah
10. Michael Jackson

1. Write my memoirs
2. Write a bestseller
3. Write a book about living with chronic illness
4. Be a Mommy
5. Have a handfasting with Jim
6. Buy a house with some land
7. Homeschool our child
8. Get into grad school
9. Graduate with my masters
10. Go to the EDS conference someday

1. Where Elvis is really buried
2. What life is out there (I know there is life out there on other planets...but where?)
3. What happens to you in between reincarnations
4. Why some people are so mean
5. How to cure or successfully manage fibromyalgia, EDS, epilepsy, bipolar, and C-PTSD
6. What dogs dream about
7. What kitties think about when they look at each other (I think they are telepathic among each other)
8. How to control my dreams
9. How to use herbs and crystals to heal
10. How to do Reiki

Wednesday, July 27, 2011

Hit and run drivers are assholes & rescheduling the cardiologist (again)

I'm in pain and need to go ice my neck so this entry may not be long.

Yesterday my brother-in-law got hit by a car while crossing the street in a hit and run accident.  The cell phone was dead and he walked a mile home after getting hit.  He said a few people saw it and never stopped.  There were a few people that asked if he was okay while he was trying to get home and when he told them he'd been hit by a car they said "Well at least you're still breathing!" and drive off.  It turns out his leg isn't broken, but the bone is bruised.  I gave him my cane to walk with and we are trying to get him to keep off of it, keep ice on it, and take aspirin for swelling and pain.  He's stubborn, too, and keeps walking around on it.

I have to call tomorrow and reschedule my cardiologist appointment once again.  We don't have the gas money to get there.  I'm so, so frustrated.  First I have to see my cardiologist, endocrinologist, and rheumatologist.  Then once I get those three crossed off my list I can finally investigate the possibility of Chiari.  I am so tired of rescheduling.  I'm so tired of not knowing what's wrong.  I'm so tired of seeing stars when I cough, because it freaks me out.  I just feel like banging my head against the wall, over, and over.  Please don't take this as a plea for money, it isn't.

Hit and run drivers suck.

Thursday, July 21, 2011

A warrant for a leprechaun, a warning for abused partners, and an ethical, yet horrible saleswoman

It's amazing what changes a really good sleep and a reduction in pain can bring about.  Right now, at least, I feel "back to my old self again."  I've even decided to start seeing my therapist again for my C-PTSD, too.  I think it will help, but it is really hard work.

...Okay I'm all shook up now.  The sheriff just came to the door after knocking super hard and about giving me a heart attack.  He wanted to know where Robert was.  He's the guy we had living with us who turned out to be a dangerous prick and we kicked out after he got out of jail.  We called Robert a leprechaun because he's short with bright red hair, and tricky.  Robert even threatened my BIL's life once with a knife, to give you an idea of his character.  It's scary that he was living with us all that time and we didn't know what type of person he was.  I mean he was not a nice guy, like we thought he was.  We had let him live here after only meeting him a few times because he was being abused at home and we couldn't bear the thought of him being abused or being in a homeless shelter when he's such a little (in stature) guy.  We always called him "a good kid" when talking about him, but we were so wrong.  I told the sheriff where I think Robert was, but I don't know for sure.  To tell the truth I could care less where Robert is.  The sheriff was really rude because I wouldn't come outside.  I'm in my nightie.  It's a pink and white with ribbons and lace nightie...not the type of thing I want anyone else, much less another man and all my neighbors, to see!  Then while I was talking to him through a crack in the door Niki was trying to get out.  I was so embarrassed!  He could obviously see I am in my nightie (no one is home but me).  I had left the matching robe undone since no one is here but me.  How embarrassing!!!!  I may be very liberal in politics, but in a lot of ways I am very conservative, like the way I dress.  So I'm still pretty much mortified.  I feel like I answered the door naked!

I have made my appointments for my doctors/therapists.  They are as follows:

Dr. Z - cardiologist              @ University Hospital     Fri 29 Jul 2011             2:20 pm
Dr. G - endocrinologist        @ University Hospital    Thur 04 Aug 2011         2:00 pm
D.D., NP - rheumatologist   @ University Hospital    Wed 17 Aug 2011         3:00 pm
J.H., MSW - therapist         @ in town                      Mon 22 Aug 2011         3:00 pm
J.H., MSW - therapist         @ in town                      Wed 07 Sep 2011         3:00 pm
Dr. P - psychiatrist              @ town 30 miles away    Tues 13 Sep 2011         1:30 pm
J.H., MSW - therpaist         @ in town                      Wed 14 Sep 2011         2:00 pm

I just have to keep all my appointments now.  That means I have to have a running car, money for gas, not be in a fibro/EDS flare, and Jim or me cannot have a seizure.  That's a tall order, and that's why I have been rescheduling and rescheduling and rescheduling.  I really, really am trying to get there, and Jim and I are determined to get to all my appointments this time!  After I see my cardiologist, endocrinologist, and rheumatologist I am going to start looking for a new neurologist.  I want a neuro who takes me serious and will investigate my suspicions of Chiari.

I do have some bad news, though.  I was really hoping that I'd get a large cut of student loan money to live on when I start school again.  That would help catch us up with our bills so much.  I must admit, I already had plans for it.  I just found out today they will give me enough to purchase a new computer after paying books, fees, and tuition, and that is it.  I would get a few thousand extra if I lived there but since I am taking classes online apparently I don't need more student loan money to live off of!  So that's more than an annoyance, but I'm taking it in stride.

I'm still trying to sell AVON, but haven't sold a single item yet.  That's incredibly annoying and I must say it kinda knocks at my self-esteem.  I'm really not a good saleswoman.  Most of my friends online are disabled with EDS.  I tend to say "I'm selling AVON, but I won't ask you to buy because that would be unethical.  I know how much you are struggling financially because so are Jim and myself."  You don't sell products that way, but at least my ethics are intact.

Well, more bad news.  I just heard that a lady we know has an arrest warrant issued because she didn't pay a ticket (that she never got!) for...get this...having her grass too tall.  WTF is the wrong with our country?  When the sheriff was here I knew I couldn't go outside even if I was dressed.  Why, you ask?  Because in this country, or at least this state, the police don't have to have a reason to arrest you.  They can arrest you and hold you 24 hours without a reason, but no longer than 24 hours.  I was afraid he thought I was "harboring a criminal" and would want to arrest me, even though if I knew where Robert was I'd give the sheriff his address.  The dude threatened my BIL's life with knives and threatened to kill anyone he's ever loved, including his and Jim's mother, who Robert didn't know, but had died a week earlier and they were still very much mourning her!  As far as I'm concerned that fuck is evil.

Oh, something else I want to mention about the cops around here.  If there is a domestic violence dispute and they are called, they arrest everyone, including the person the violence was directed at.  What does this teach abused partners?  Do not call the police if you are beaten because you will be arrested.  What a fucking wonderful injustice justice system we have!
If she called the police in my county she'd be sitting in jail instead of the hospital

Now for the good news.  I've lost weight.  I've lost 19 pounds!!!  I'm really excited about it.  I've been losing weight slowly since January.  If you lose it slow it is more likely to stay off.  So here's to a skinnier me!


Monday, July 11, 2011's just too much...

I've been especially stressed lately and I'm not handling it well at all.  I cry all the time, I sleep a lot, I have panic attacks all the time, I can't concentrate, I'm always angry or crying or's just too much.  I feel like the stress is making me crack.  It's just too much!

Tuesday, July 5, 2011

Migraine hat

I know I've been absent for awhile.  I've been having a lot of problems with headaches.  They seem to get worse every couple of days.  I have a headache almost all of the time.  Thankfully, I rarely have migraines, just headaches.  I did have a migraine the other day and DH helped me to make a "migraine hat" of ice packs.

Front view

Side view

Back view

Top view


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