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 ~ 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 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/.


Monday, January 1, 2018

2017 Year In Review

January

January 1st, 2017 was the start to a new year, and an end to 2016, which was a horrible year for us. The year of 2017 was just as bad, if not worse. For New Year's Dinner we had lamb and roast potatoes. It was the first time I'd ever eaten lamb. I liked it, but only ate about a third of it. It tastes better than beef, I understand why lamb is so popular around the world. I was still in a depressive episode that began in December 2015. My mom's dog Lady passed away. She was a beautiful, sweet, loveable Boston Terrier that was my mom's baby. Donald J. Trump was sworn in for President and Mike Pence was sworn in as Vice-President. The last two days of the month I was in a pain flare.

Me
Smirk

Lamb and roast potatoes
Lamb and roast potatoes


February

The first day of February was full of cramps and depression. I was still in the depressive episode in February. The second day of February was Imbolc, a religious holiday I celebrate. I had my first seizure of the year on February fifth. I had a POTS flare, and there was a lunar eclipse on the 10th and 11th. I had a five day pain flare, and there was a solar eclipse on the 26th. Daddy had a birthday and turned 63. Toward the end of the month I struggled with paranoia and psychosis.

Wearing a headband from my friend LP
Wearing a headband from my friend LP

A petal that fell off the Valentine's Day rose DH got me
A petal that fell off the Valentine's Day rose DH got me



March

My depressive episode was still sticking around in March. I started the first three days of the month in a pain flare. I had two more pain flares, and four POTS flares. It was a very rough month financially. The 30th was World Bipolar Day, and March was Self-Harm Awareness Month. Doing my adult coloring books and printouts I made of coloring book pages for anxiety relief on the days my hand pain wasn't too bad. I also celebrated Ostara.

In my favorite Woodstock tie-dye T-shirt
In my favorite Woodstock tie-dye T-shirt

Katya and Niki sleeping in a box
Katya and Niki sleeping in a box

April

April brought two pain flares and the end of that depressive episode. By the end of the month I started another depressive episode. Things got much worse financially. My OCD symptoms started coming back more. April was Sexual Assault Awareness Month. I celebrated Easter with chocolate.

Me. Hello!
Hello!

DH giving kisses to Katya behind my head
DH giving kisses to Katya behind my head


May

May first was both Beltane and International Workers' Day. I wore green glitter on Star Wars Day, May the 5th, for Carrie Fisher. I chose green because green is the color for both mental health awareness and bipolar awareness. May was Ehlers-Danlos syndromes Awareness Month and Mental Health Awareness Month. I was still in a depressive episode. I cried all day on Mother's Day because I was scared I'll never be a Mommy. The 12th of May was Fibromyalgia Awareness Day. I think it deserves a month long awareness campaign, not just one day a year. I ended the month starting a TMJ Dysfunction flare that lasted in to June, for a total of eleven days. I couldn't eat solid food and lived off of chocolate malt shakes because I couldn't chew and had a hard time getting enough calories without chewing. Stress was high because of our health and finances. OCD symptoms continue to appear here and there.

Wearing glitter for Carrie Fisher on May the 5th, Star Wars Day
Wearing glitter for Carrie Fisher on May the 5th, Star Wars Day

My red puppy dog scarf with pugs on it
My red puppy dog scarf with pugs on it


June

National Pen Pal Day was June 1st. I planned on sending cards to m pen pals, but I've been horrible lately, and haven't got many pen pal letters out in 2017. Of course, since my moods are massively out of control it makes it hard. I realize I get irresponsible when I'm having a bipolar episode. I turned 36 and within a month my hair went gray around my face. My birthday was on the one year anniversary of the shooting at Pulse. My birthday was also the World Day Against Child Labor and National Peanut Butter Cookie Day. I didn't get a peanut butter cookie on my birthday, though. I also got a new therapist, which is always a hard thing to do.

Just me
Just me

Niki and Katya cuddling
Niki and Katya cuddling


July

In mid-July my depressive episode ended. DH had a back injury helping a friend. I had a POTS flare and a pain flare. I continued seeing my therapist and I was starting to feel she might be someone I could trust. I decided that I could use a zebra hardcover notebook to keep therapy notes I take during therapy and home. It made it a lot easier to keep track of what I'm learning in therapy and how far I've come.

I remind myself everyday that I'm AL;VE
I remind myself every day that I'm AL;VE

Me
Me


August

In August we celebrated Lammas/Lughnasadh, a holiday in my religion that marks the beginning of the harvest season. I saw the Full Solar Eclipse on August 21st. I had two tonic-clonic seizures in my therapist's office late in the month. My cousin mailed me some of her homemade soap to try and I loved it. She is the only cousin I am in contact with.

Us
Us

Making faces after a shower
Making faces after a shower


September

I entered another depressive episode and started out the month of September very suicidal. I started talking to my best friend and chosen sister again, after not doing so for a long time. I was so happy to have her back in my life as she is my very best friend. Mid-September I came close to attempting suicide, scrawling on myself "Ashes Don't Have Debts." I had a horrid time with self-injury. I ended the month of September with an episode of psychoisis.

Pain and depression
Pain and depression

Pain and depression
Pain and depression


October

I began October with a TMJ flare. My bipolar psychosis was very bad most of the month. I got a mild cold, but recovered fairly quickly. Jim and I celebrated Samhain together on the 31st.

The view from my front porch
The view from my front porch

Halloween night
Halloween night


November

My depressive episode ended mid-November. I entered a mixed episode late November. I started exercising again. I saw my parents for Thanksgiving and had a seizure at the Thanksgiving table, which made me feel really guilty.

A Catholic Cathedral in mid-Missouri
A Catholic Cathedral in mid-Missouri

The Missouri State Capital Building in Jefferson City
The Missouri State Capital Building in Jefferson City


December

In mid-December my mixed episode ended, and I was able to celebrate Christmas without depression or mania. We changed cable companies, but we had already exchanged gifts with my parents at Thanksgiving, so it felt weird not having theirs to open on Christmas morning. I was happy with my present from Jim, a smart phone.



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

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