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 ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Self-Harm ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Thursday, March 1, 2018

"melody," a poem

This poem is about self-harm, something I've struggled with for 23 years (24 years in October 2018). I in NO WAY want to glamorize self-harm. It's a horrible thing I wish more than anything that I'd never started doing, and can lead to nerve damage, infection, permanent muscle damage, and even too much blood loss to the point of accidental death. Self-harm is caused by mental illness, but is an addictive behavior, similar to gambling addiction. For people who have self-harmed for many years the addiction is as bad as a heroin addiction. It has ruined so many aspects of my life, and destroyed my self-esteem and self-confidence. I'm only posting this poem to help others realize what it feels like to feel the need to self-harm. I must stress, this is a poem about self-harm, and I don't recommend anyone who is triggered by self-harm to read it. I want people who don't understand what it's like to need to self-harm, especially people who have been self-harming for years. It's just a peek inside my head. This was written in June 2017.




“melody”

oh god i missed this
endorphins surfing my brain waves
my fingers red and sticky
i pull at either side of the cut,
eager to make more precious liquid come out
right now i don’t care if i scar,
or what a disgusting freak i am
instead they whisper to me that they love me
they lie and say i’m special and deserve
more red badges of courage
it’s the only time I feel with all of me,
it’s the only time that peaceful melody plays


If you feel like you're in crisis, please get help. Text the Crisis Text Line to talk to trained counselors about what's on your mind. text “HOME” to 741741 Free, 24/7, Confidential. If you feel suicidal, chat online at http://www.imalive.org. The National Suicide Prevention Hotline number is 1-800-273-8255 or go to https://suicidepreventionlifeline.org/.

Thursday, February 15, 2018

“Blowflies,” A Poem

I wrote this in June 2017 when I was very suicidal. I am no longer suicidal, but I wanted to share this poem. Please understand, this poem is about suicide, so if that's a trigger for you, you may need to stop reading here.

In no way do I mean to "glorify" or "romanticize" suicide. Suicide is a horrible thing. I've struggled with suicidal thoughts for most of my life and have had two failed attempts. I'm so thankful I'm alive. I just want others to understand what it feels like to be suicidal or have suicidal ideation and what those that do have these thoughts that when you reach bottom the only way to go is up. Things get better!



“Blowflies”


I know it’s just a matter of time
Until they find my corpse
Rigor mortis in a fetal position
Covered in a bloody sheet
Dried and stuck to my body
I just hope I don’t rot first
I fucking hate blowflies

Amy B



If you feel suicidal, please get help. Text the Crisis Text Line to talk to trained counselors about what's on your mind. text “HOME” to 741741 Free, 24/7, Confidential. If you feel suicidal, chat online at http://www.imalive.org. The National Suicide Prevention Hotline number is 1-800-273-8255 or go to https://suicidepreventionlifeline.org/.


Tuesday, November 28, 2017

The Five Best Charities To Give To On #GivingTuesday


Giving Tuesday is a wonderful idea. Here in the United States, last Thursday was Thanksgiving, a day where we count our blessings, gather to eat a large meal with family, and spend time being thankful for the things in our lives we may not usually give time to be thankful for. I found that this Thanksgiving I was thankful for not ending up in the psychiatric hospital since 2004, our kitties, my DH, my parents, running water, a roof over my head, food, my Medicare, and my many books. Giving Tuesday was started in 2012, and you'll find many different places, from Facebook to potentially your employer will match your donations on Giving Tuesday.

1. National Alliance on Mental Illness (NAMI)


NAMI saved my life, and I will be forever grateful for it. Learning about mental illnesses, not just me, but my family too, helped save my life. I found out I am one in many, not just some freak of nature. I found out that I can be successful in life with a mental illness, and there are different definitions of success. Volunteering at NAMI for years gave me not only a voice with my legislators and with the community, but it also gave me a purpose. I highly recommend NAMI as a charity to give to. On Charity Navigator rates NAMI three out of four stars.


2. Brain & Behavior Research Foundation


Brain & Behavior Research Foundation is a charity I've only recently learned about. They do actual research to cure mental illness. Of all my medical conditions, my Bipolar Disorder Type 1 is the most disabling. A cure for bipolar couldn't be more exciting. The Brain & Behavior Research Foundation is awarded four out of four stars on Charity Navigator.


3. The Ehlers-Danlos Society


The Ehlers-Danlos Society, formerly the Ehlers-Danlos National Foundation (EDNF) is controversial in the EDS community. They were a big part of changing the definitions of every type of EDS, and took away a lot of people's diagnosis that have hypermobility type EDS and replaced it with Hypermobility Spectrum Disorder (HSD). HSD will not be taken as seriously, as you can have HSD if you have only one hypermobile joint. So, it will be easy for doctors to dismiss anyone with the HSD diagnosis, even though there are different levels of HSD. It's just not ever going to be taken as seriously as EDS. I absolutely do not support these changes. Now you're probably wondering why I included them on this list. The reason is simple, they fund a lot of EDS research and actively work for EDS awareness. I'm not sure if they research the so called "Hypermobility Spectrum Disorder," though, when they say they're researching EDS. So give to this charity with caution. Charity Navigator doesn't have information on The Ehlers-Danlos Society or EDNF.


4. Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc.


I support EDS Network CARES because they spread awareness about EDS and fund research on EDS. It was started by a woman who lost both her husband and son from vascular EDS. As far as I know, EDS Network CARES wasn't involved in the reclassifications of EDS. Again, I am very much against these reclassifications of diagnosis. Charity Navigator doesn't have a




I think St. Jude's Research Hospital. They treat any child with cancer, and never charge a dime. They've come under fire for how much they spend on advertisement, yet with the amount of money they take in with their advertisement I think it's worth it. Charity Navigator gives St. Jude's three out of four stars.

Saturday, October 7, 2017

Hello y'all! An Introduction Video

This is my first video I've made in quite awhile, and the first blog post I've made in quite awhile as well. I plan on making more of both, but thought I'd share the video here. Thanks for watching!





Hello! Thank you for watching my video. This is an introduction about myself. I deal with Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Fibromyalgia, Bipolar 1, and anxiety, among other things. I'm 36 years old, a kittymommy, and my goal in making videos on these health conditions is both to educate the public and to help people who have these conditions to be able to get the correct diagnosis from their healthcare professional. I hope you all have a wonderful day, and don't forget to like and subscribe!

Saturday, December 31, 2016

2016 Year In Review in Photos

January

From my coloring book I got for Christmas from fellow zebra RH. (You can get it here.)


In one of my favorite pashminas and my rose quartz and amethyst necklace

Katya all stretched out
Katya all stretched out


February

DH and I


Valentine's Day

Two of my loves: DH and Niki
Two of my loves: DH and Niki


March

Spring decorations


This shirt is huge on me, but the colors look great with this scarf!
In my St. Louis Cardinals hat that makes me think of my Grandp
In my St. Louis Cardinals hat that makes me think of my Grandpa


April

Smile...whether you're happy or not!


Wearing my favorite shirt and my St. Anne medal
I got my first black eye when I fell after being on Depakote and turning into a zombie
I got my first black eye when I fell after being on Depakote and turning into a zombie
May


Niki on a box 
Katya on her new scratchpad
A picture of my mom's dog, my "sister," wishing me to feel better soon with my depression
A picture of my mom's dog, my "sister," wishing me to feel better soon with my depression


June


So depressed it's almost impossible to smile


DH
My birthday presents from Mama and Daddy
My birthday presents from Mama and Daddy


July


Wearing my Always Harry Potter necklace.


I gave the cats two small pots oat grass, and they ate it down then played with the pots, spilling soil everywhere

Fresh from the shower!
Fresh from the shower!


August


Katya sleeping


Wearing one of my favorite bandannas


Zebra Super Woman!
Zebra Super Woman!


September


Smile!

Niki mid-yawn
Niki mid-yawn


Smile!

October


My new AFOs (Ankle-Foot Orthosis)

A day I wore make up! I think I'm getting better at it. :-)
A day I wore make up! I think I'm getting better at it. :-)

Happy Halloween!
Happy Halloween!


November

My parents on Thanksgiving. My mom doesn't look 59 and my dad doesn't look 62!
My parents on Thanksgiving. My mom doesn't look 59 and my dad doesn't look 62! 

DH and me on Thanksgiving at my parents' house
DH and me on Thanksgiving at my parents' house

My parents and I on Thanksgiving at their house
My parents and I on Thanksgiving at their house


December


DH and me
DH and me 

The cats on Yule
The cats on Yule

Me on New Year's Eve
Me on New Year's Eve

Monday, December 19, 2016

12 Days of Christmas Blogging: Day 6

Day 6: Share a good childhood Christmas memory

12 Days of Christmas Blogging
12 Days of Christmas Blogging
One of my favorite Christmas presents I ever got was my Easy Bake Oven. I know now they're considered sexist, but I would get one for a child who loved being in the kitchen regardless of their gender. I made Jesus' birthday cake (a tradition in my household growing up) with my Easy Bake Oven when I got it in 1989, at age eight. Afterwards, we went to our neighbors farm and she gave us some fresh eggs.

Sunday, December 18, 2016

12 Days of Christmas Blogging: Day 5

Day 5: What is on your personal wish list this year

12 Days of Christmas Blogging
12 Days of Christmas Blogging


  1. An semicolon necklace. Why the semicolon? The Project Semicolon represents that my life isn't over yet. I'm taking a stand against suicide and self-injury. My life will keep going, even when things seem at their darkest. I will keep going, because I have to, no matter how hard I try. I plan on getting a semicolon tattoo over some of my self-injury scars on my right thigh.
  2. A pillow that's for elevating my feet. This will help with my blood pooling in my legs from my POTS (a type of dysautonomia). Blood pooling in my legs can cause me to faint, not get enough blood to my brain, become very dizzy, slow digestion, cause nausea, make it hard to think, cause pain in my legs, etc. 
  3. Something handmade from DH

Thursday, December 15, 2016

12 Days of Christmas Blogging: Day 2

Day 2: Favorite Christmas tradition new or old

12 Days of Christmas Blogging
12 Days of Christmas Blogging
My favorite Christmas tradition is something I've done since childhood. Each year, all the members of my family try to do something nice for someone else, even if we don't have much for ourselves. It may be a home cooked meal, grocery bags of food, an angel or ornament from one of the giving trees (they have the gender, age, and what they want on the back), or something else. This year DH and I collected items to give to the domestic violence shelter. We tried to think of things that most people wouldn't, so we got new bras, tampons, incontinence pads, incontinence disposable underwear, cooling cloths for hot flashes, etc. I really hope some people are able to use these items, and it makes someone's life easier.

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