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) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

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.

Wednesday, December 14, 2016

12 Days of Christmas Blogging: Day 1

12 Days of Christmas Blogging

Day 1: List your favorite things about Christmas
Day 2: Favorite Christmas tradition new or old
Day 3: Your favorite Christmas recipe/food
Day 4: Share a Christmas story or write one of your own
Day 5: What is on your personal wish list this year
Day 6: Share a good childhood Christmas memory
Day 7: A photo day, share some Christmas pictures past or present
Day 8: Share a local Christmas tradition in your town or country
Day 9: Who will be sitting with you for Christmas dinner?
Day 10: Favorite Christmas movie or song
Day 11: What was your favorite childhood Christmas present
Day 12: What are you grateful for this Christmas?

12 Days of Christmas Blogging
12 Days of Christmas Blogging
My top 12 favorite things about Christmas:


  1. Going looking for Christmas lights
  2. Candy canes
  3. Baking, even if I don't want to eat what I bake!
  4. Wrapping presents
  5. Buying gifts for people
  6. Handmade Christmas ornaments from my childhood
  7. Santa Claus!
  8. Snow globes
  9. Snow angels
  10. Red ribbons everywhere
  11. Christmas carols/Christmas music
  12. Red and green everywhere!

Saturday, November 5, 2016

30 Day Chronic Illness Challenge: Day 5

Day 5: How does being chronically ill make you feel?

30 Day Chronic Illness Challenge
30 Day Chronic Illness Challenge
Being chronically ill makes me feel scared, isolated, lonely, and unsure about the future. I don't know whether I'll end up in a wheelchair someday, or succumb to my depression. The future is a huge question. Being sick is lonely. I don't really know anyone in my town, but I have lots of friends online who are EDSers, POTSies, have fibromyalgia, etc. and they are a huge support to me. Even then, I sometimes just feel so lonely. Having a question mark in the future as to what my health will be like is unsettling, to say the least.

Friday, November 4, 2016

30 Day Chronic Illness Challenge: Day 4

Day 4: How have your friends and family reacted to it?


Growing up I was bullied badly because I confided in the wrong people that I was mentally ill. It was also obvious something about me was off, and my emotions and behaviors were erratic. The biggest mistake I made was confiding in someone. I always tried my best to downplay and hide my pain, though I got made fun of for smelling like Ben Gay all the time.

As an adult, people didn't take my pain seriously until I was completely disabled by it. My doctors still don't take it seriously enough. DH takes my pain, POTS, and mental health very seriously, which means a lot to me. Most of my social interaction is online, and I have found very supportive communities online that I depend on.

My parents always took my pain seriously. They finally accepted that my mental illness wasn't my fault, when they took a class offered by NAMI (National Alliance on Mental Illness). Before that they tried to understand, but I didn't even understand what was going on myself. NAMI saved my life.

These days I'm not around them, and I feel much safer, plus I always know DH is there to protect me.

Thursday, November 3, 2016

30 Day Chronic Illness Challenge: Day 3

Day 3: How did you get a diagnosis?


Since I have multiple diagnosis, I'm going to cover only a few: Ehlers-Danlos Syndrome (EDS), Postural Orthstatic Tachycardia Syndrome (POTS), Polycystic Ovarian Syndrome (PCOS), and Bipolar Disorder.

I have been in pain as long as I can remember. Some of my earliest memories are of crying and asking my dad why I hurt so much all of the time. My parents took me to doctors for years, and we kept getting the same run around. They all said that my labs were normal, so there couldn't possibly be anything wrong with me. I was diagnosed with fibromyalgia when I was fifteen. After that, any pain I ever complained of was automatically dismissed as being a part of fibromyalgia. My hip subluxed all the time, and I figured out how to get it back in myself. I didn't exactly know what was going on in the joint, I only knew what I had to do so I could walk again. That started around age fourteen. It wasn't until a rheumatologist commented that she'd never seen anyone so hypermobile that I even began to suspect EDS. I looked up hypermobile joints, which led me to looking up EDS. I read a lot about it, and watched many YouTube videos on it. I was pretty sure that's what I had, but my rheumatologist refused to send me to physical therapy or to even consider I might have EDS, since I can't touch my tongue to my nose. As a side note, quite a few EDSers can touch their tongue to their nose, but you don't have to be able to do so to get a diagnosis of EDS, and not all EDSers can do it. I went to another rheumatologist who said it didn't matter if I had it, as there is no cure, so he didn't think it was worth investigating. I finally convinced him to give me a referral to a geneticist. He was incredibly rude, so I didn't see that rheumy again. I then went to the geneticist, who talked down to me and was very rude. He said I had EDS or Hypermobility Syndrome, but it didn't matter which since it's uncurable. I got the notes from the appointment and throughout the report the doctor said things that never happened. He even said he spent well over an hour in the exam room with me, when it was actually only twenty minutes. Reading his notes about the appointment was strange, because it was like reading a piece of fiction someone put my name in. I then went to another rheumy, still looking for someone to take my EDS seriously. This doctor said he definitely thought I had EDS, but that he didn't feel qualified to care for such a complex patient. So, back to looking for another rheumy I went. The next one I found was in the same office of the rude doctor who sent me to an even ruder geneticist. She is the doctor I see now. She's actually a Physicians Assistant (PA) in rheumatology. I'm not happy with her, but I searched a long time for a doctor and I'm keeping her. I've been seeing her for years now. Meanwhile, I made an appointment in St. Louis with a very well known and new to the area geneticist at Children's Hospital, named Dr. W. She has done research in related areas, and EDS is one of her specialties. I had to fill out a huge stack of paperwork to send back before my appointment, which felt promising, as no other doctor had ever gone into so much depth. She was so nice! First I saw a genetic counselor, then Dr. W and the genetic counselor together, and then the genetic counselor again. She gave me the most thorough exam any doctor every had. She carefully inspected every joint, my skin, my scars, my eyes, the roof of my mouth, everything. I scored a 7/9 on the Beighton Score. I went back to my PA rheumy armed with information from Dr. W and pamplets from the Ehlers-Danlos National Foundation (EDNF), which is now The Ehlers-Danlos Society. I later got copies of my records from my PA rheumy, and she seemed quite annoyed that "the patient keeps giving me material on EDS." After that I stopped, though if you have a receptive doctor, I highly recommend printing off this page, as it's considered the "EDS Bible" on hypermobility type. (The same information on the Classic type is here, and here on the Vascular type.) These cover the basic genetics involved in EDS. I was diagnosed by Dr. W with the hypermobility type and as a spontaneous mutation, since I'm the first in my family to have it. My PA rheumy treats my EDS, and I see her once a year.

My POTS diagnosis was an ordeal as well. I first started suspecting POTS once my EDS diagnosis was confirmed and I began to show more and more symptoms of POTS. I scheduled an appointment with a cardiologist, and she scheduled an echocardiogram (an ultrasound of the heart), and the tilt table test. After the tests were completed, the technician said I was normal, so I didn't ever go back to get the results. A year later, when looking over the doctor records I'd ordered, I noticed that the cardiologist had put a note in my chart with the diagnosis of POTS. I had never gone back because the technician said everything looked normal. I shouldn't have done that, as she isn't properly trained to interpret the test, only to perform it. I went back to the cardiologist and she (and her supervisor) asked me all sorts of questions about EDS and what it was like to live with it, as they'd never met anyone with it. She told me she had no idea how to treat POTS, so her advice was "eat a heart healthy diet and call me if anything changes." It's gotten a lot worse since then, but I no longer have faith that I can find a doctor competent enough to treat me.

Since I went through puberty two things were wrong: I became extremely depressed, and my hormones seemed out of control. My mom and dad tried everything to make me "snap out of it" or "pull myself up by my bootstraps." They finally took me to therapy after three years of depression. I was diagnosed with Major Depression and given Paxil. My psychiatrist warned to "watch for manic depression," but we didn't know what manic depression even was. By age fifteen I'd had three stays in a psychiatric hospital. For years doctors couldn't decide what was going on, and my hormonal issues were passed off as being part of my mental illness. It wasn't until I was nineteen and in a severe manic episode, that I was diagnosed with bipolar disorder. If I'd been properly treated from the time it showed up at age ten maybe I wouldn't be disabled from the bipolar, but that didn't happen, and my bipolar limits my life and makes demands on me that are too disabling for me to live a normal life. Still, I knew I also had a hormonal problem. I kept going to doctors, telling them I knew it wasn't normal to sometimes go months with no period, but they kept brushing off my concerns as no big deal. It wasn't until I moved here when I met DH that I demanded to see an ob/gyn to test my hormones. I got in to see the ob/gyn I have today, and he tested my hormones and did an internal ultrasound of my ovaries. They were covered in the tiny pearl-like cysts that so often (though not always) come with PCOS. 

I have had a horrible problem finding doctors that care, but I do have a caring ob/gyn and endocrinologist, and I'm happy about that. 

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