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) ~ Self-Harm ~ Bilateral Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ Eczema

Thursday, July 18, 2019

You mean it's not normal?

I remember little things that I didn't understand growing up and until I found out I have EDS (see What Are Ehlers-Danlos syndromes?). For instance, I remember being four and asking my Grandma and Mama why they liked footstools when your knees just bend backward when you prop your feet out and it hurts after a while. I remember them looking at me weird and saying "Knees don't bend backward." I was really confused because I thought that everyone's knees bent backward, but I shrugged it off. 

Mama used to tell me when I was a teenager that my skin was so soft and velvety, yet I got so many stretch marks so easily, that it was like my collagen was made weird. So she'd buy me collagen lotion because we didn't know any better at the time and thought it would fix it. This was about fifteen years before my diagnosis or either of us ever hearing of EDS.

Me at age ten
Me at age ten

When I was in track and field it confused me so much how people could be such great runners, jumpers, throwers, etc. but not be able to sit in the floor, lean forward, and comfortable rest their wrists on the toes. I was also confused why no one else was able to stand, bend over, and put their hands flat on the floor without bending their knees. It's so easy for me, how on Earth could someone be in such good shape and not be able to do something so easy?
Whenever we did the Presidential Fitness Test it was the worst time of the year because it hurt to run, it hurt to try chin-ups, it hurt to sprint, etc. So that always meant I could look forward to non-stop pain for the next couple of weeks or so. I thought it was that way for everyone, but they hid it better, since the doctors kept saying I was normal. It started being so painful to run by the time I was eight that I cried every time we ran, doubled over in pain, embarrassed as I tried my hardest not to cry, and often failed. I thought I must just be wimpier than others because everyone's joints and muscles have to be hurting as well, I just couldn't handle normal pain.

I also thought everyone always hurt all the time, that it was normal. I remember sitting on the black metal front steps of our trailer with Daddy when I was a kid. I remember saying while crying, "Why does it hurt so bad, Daddy? I hurt so bad everywhere, why does it hurt so bad? Please, Daddy, make it go away. If feels like there's knives in my knees, they hurt so bad. Make it stop." I remember a concerned look on his face and shortly after my parents took me to the doctor for the first time for chronic pain. I've been going to the doctor for pain since I was four. Throughout the years, they would do X-rays and they always came back normal, so I was told I was normal, but I just had a super low pain tolerance and basically couldn't handle normal life. I never got anything for my pain until I was eighteen when I was finally prescribed Celebrex (a COX-2 Inhibitor, a type of NSAID). I've not stopped taking Celebrex since then, but I've doubled the dose I started on. Back then Celebrex had no generics, and my doctor spent hours on the phone with the insurance company, and no doctor ever devoted that much time to me as she did.
My dad taught me how to wrap my knees, ankles, and wrists with ACE bandages when I was eleven. That's when I started using Flexall, which totally destroyed any chance of making friends because I smelled like menthol all the time. It didn't help that I often limped, started around age eight, sometimes on one leg, sometimes on the other, and occasionally would cry in class from the pain, especially if it was very cold in the classroom or we just got back from recess or P.E. I think people thought it was weird that I limped on different legs sometimes on the same day, but both legs hurt, sometimes one more than the other.

200 mg Celebrex
200 mg Celebrex

It never occurred to me that I wasn't normal. I thought my joints were normal and everyone else I knew just was extra stiff. I have to admit, when I was finally diagnosed with EDS it explained a lot. I'm learning new things all the time about EDS and it explains more and more things about me. I don't know what I would have done in days before the internet. I know I never would have been diagnosed!

Monday, November 19, 2018

5 Great Charities To Give To For #GivingTuesday, and 3 Not To

Good Places To Donate:

1. Crisis Text Line

Donate to Crisis Text Line #GivingTuesday
Donate to Crisis Text Line

The Crisis Text Line is a great program that I've taken advantage of. The trained people on the other end of the texts are very helpful. If you donate to this charity, you may be saving a lot of lives.

2. RAINN (Rape, Abuse & Incest National Network)

RAINN (Rape, Abuse & Incest National Network) needs your donations #GivingTuesday
Donate to RAINN (Rape, Abuse & Incest National Network)

RAINN is there for people who have experienced rape, abuse, and/or incest. They do great work to help people, including a hotline you can call at

3. Your local domestic violence shelter

Donate to your local domestic violence shelter
Donate to your local domestic violence shelter

Help people in your own community by donating time, items, or money to your local domestic violence shelter.

4. Your local homeless shelter

Donate to your local homeless shelter
Donate to your local homeless shelter

Again, this is a great way to help people in your own community. You could provide items they need, money, or donate your time.

5. Suicide Prevention Lifeline

Donate to National Suicide Prevention Lifeline

Donate to the National Suicide Prevention Lifeline and save a life today!

Don't Donate To These Organizations:

1. Focus on the Family and Family Research Council
Avoid donations to the Hate Group Family Research Council
Don't donate to the Hate Group Family Research Council
Don't donate to the Hate Group Focus On The Family
Don't donate to the Hate Group Focus On The Family

Focus on the Family is a part of the Family Research Council. They have donated thousands of dollars toward fighting against LGBTQ+ people's rights.

2. Kids Wish Network

Don't donate to the bogus "charity" Kids Wish Network
Don't donate to the bogus "charity" Kids Wish Network

Kids Wish Network has been in the news a lot in recent years for donating any money to children but instead lining their own pocketbooks.

3. American Breast Cancer Foundation

Don't donate to the bogus "charity" American Breast Cancer Foundation
Don't donate to the bogus "charity" American Breast Cancer Foundation

This charity is completely bogus. Money donated to the American Breast Cancer Foundation goes straight into the pockets of the rich, and none of it goes to help breast cancer victims or prevent it.

Tuesday, October 2, 2018



Anxiety is a weight inside you
It's pressing, pulsing, and alive
More alive than you are
Depression is a deep blackness
Craving the fire inside to restart
You blow on the kindling
Burn, burn, burn
So you can rise again

Friday, September 21, 2018

I had a lot of dreams last sleep

I dreamed that I met one of my Facebook friends in person. We were sitting across a table from each other. I said, "I hate cops." Then he said "ACAB," (All Cops Are Bastards) and showed me his tattoo. I have no clue what that dream was about. I don't like cops in general, but I don't think they're all crooked. 

I also dreamed that Niki died, it was horrible. I dream about her death a lot. 

Photo of me

I also dreamed I was kidnapped and raped, but I dream that nearly every night so that's nothing unusual. That's just a normal dream.

In another dream, I was sold into sex slavery and was confined to the hull of a huge ship that looked like an old slave trade ship. I've been having that dream a lot in the last few weeks. The ship is always on the hill you turn off onto on AA Highway on the way to my grandparents' house was in my hometown. I hated my Grandma until the day she died, and still hate her. I hated my Grandpa until he was an old man and quit being an abusive asshole. Grandpa was a good man when he passed away and had been for awhile. However, I associate that hill with the dread of driving past their house. I used to get this sick feeling in my stomach every time we passed that hill.

Photo credit: Matt Van der Velde

I also dreamed I snuck into a McDonald's meat processing plant and rode the conveyer belt with fresh hamburger on it. I could smell beef blood everywhere, it was disgusting. I rode it into a cave where I jumped off into a river. I've been having dreams for months about jumping into rivers in caves. I can't figure out what that means. It is showing up so often in my dreams it has to symbolize something to my unconscious mind.

In the last dream that I remember, I dreamed someone stole my Harry Potter books, which is practically a death penalty offense. I keep dreaming about people stealing my books, or putting my books in the river.

My mind NEVER turns off!

Monday, August 20, 2018

Bullsh*t doesn't get the taste of saccharine out of your mouth

I could stay in contact with everyone online from my bed. I could use pillows to try to get comfy typing a blog from bed. However, I can't be with the kitties (unless they happen to be in bed with me) and I can't be with DH (Darling Husband) without getting out of bed. That's why I get out of bed every day. If it wasn't for DH and the kitties, I think I'd just stay in bed all day.

I can't stop the inner voice from being negative. When I say that inner voice, I'm talking about the internal monolog or self-talk we all have. I don't have any control over it when I'm depressed, it overrides any attempted positive self-talk. If I try and turn my inner monolog into something positive, nothing comes of it, because inside me I know it's all bullshit. Knowing it's all bullshit overrides any cheery saccharin cliché positives learned in therapy to tell myself.

It's only two more days before I can see my therapist again. I've been having a hard time verbally describing how I feel lately, especially the deeper things. It's almost as if the part of my brain that can write about complicated deep things is still free, but the part of my brain that controls talking about that stuff has a lock on it. So I'm not sure how much therapy will be helpful, but I'm trying to keep an open mind.

I finished a book last night I really enjoyed. I loved the ending. I loved the rest of the book, too. It was a coming of age LGBTQ+ book about a bisexual teen girl who falls in love with another teenage girl. It was really sweet. I usually don't read YA books, but this is the second YA book I've read recently that I absolutely loved. The other book was a horror book and the first in a series.

I wrote my mom a letter today. I will try to get it out in the mail tomorrow. It turned out longer than I expected, but my hands were in great pain and I had to rest them for a while before I could return to my computer.

It's getting's already after midnight. I think I'll go to bed soon. I took a melatonin last night and still couldn't sleep. Tonight if I can't sleep I think I'll try three Benedryl. I'm so frustrated.

Saturday, August 18, 2018

19 years and two and a half hours ago

Last night while I was getting undressed, and DH (Darling Husband) lay sleeping in bed, I had a sudden realization. On my sister's birthday on August 14th, 2000 I was really manic, but not yet diagnosed with bipolar. I had just come home from a friend's wedding the day before. I wanted to leave, as I said, I was very manic, but I stayed home with my sister that day. The next day I met rapist #2. Two days after that I met him for the second time and he raped me. That means that it happened on August 17th, 2000. I previously hadn't been able to remember the date but knew it happened around midnight that night. I made this realization yesterday, on August 17th, 2018 at 2:30 am. I realized it had been 19 years and two and a half hours ago that it happened.

I started shaking uncontrollably and sobbing hard. I was surprised DH didn't wake up. I know I could have woken him, but I really didn't want to, as he really needed his sleep. I know that he will probably be frustrated when he finds out I didn't wake him, as I know he would have wanted me to wake him, but he was finally getting some sleep and I just couldn't bring myself to wake him.

I cried so, so much for such a long time; heartwrenching sobs. I had flashbacks and cried off and on until 6:30 am when I finally fell asleep. Niki heard me cry when I first started, and she ran into the bedroom. She climbed up next to me on the bed and purred. When I finally laid down, she crawled on top of me, purring and giving me kitty head bumps. Eventually, my pain started getting really bad from the release of stress hormones in my body. It's like Niki somehow knew that my pain was getting worse, so she climbed off me and lay down on my pillow next to me. She purred next to my head while I cried, and when my sobbing would slow she'd fall asleep and snore lightly. When I started up sobbing again, she'd press her body against my head and shoulders and purr. Katya also was on top of me, on my legs. At first it was wonderful. Once the pain got really, really bad, though, I tried gently pushing her off. After I pushed her off eleven times I finally let her stay. The pain was excruciating, but it was obvious that she really, really wanted to lay on my thigh and I didn't have a choice about it. I don't love Katya less than Niki, I loved her laying on me, too, until the pain got to flare levels. (It wasn't a flare, however, because a flare must last at least 24 hours.)

DH started waking up, but by then my tears had finally dried up and I was quiet. I gave him a melatonin last night because he just so desperately needed sleep.

Niki helped me get through the night, I think I would have lost it without her. I definitely would have had to wake DH, and I'm very, very worried about his health. Since DH hasn't been sleeping hardly at all, I think it's really making his already poor health worse. As my longtime readers know, DH is disabled as well.

I prayed the Rosary a lot last night. I couldn't remember the Mysteries, I've always had trouble memorizing them, even when I used to pray the Rosary daily. So instead, I imagined the Blessed Virgin Mary in the air above the foot of the bed, her hands clasped in prayer, snakes at her feet, and a blue light emanating from her and lighting up the bedroom. I concentrated on that, and my Niki next to me, and I was able to get through the night. I also concentrated on feeling the love I know DH has for me, as he lay next to me sleeping.

It was a really rough night, but I made it through, and I'm really proud of myself for that.

Friday, August 17, 2018

The clouds moving in

Last night I took a melatonin pill and it helped me get a nice ten hours of sleep. I haven't been sleeping enough at night, so I'm sleepier during the day than normal. I already have a lot of daytime sleepiness, from a combination of my poor health, unrestful sleep, and meds. It helped my mood tremendously, though I'm still very, very fatigued. Then when the sun went down my depression moved back in, like foul black clouds moving to cover the moon.

Thursday, August 16, 2018

With nothing under my feet

Trigger Warning: suicide, self-harm
I hate what mental illness does to my brain so much. Since I've been thirteen I've dealt with suicidal thoughts and self-harm. My bipolar began with a three-year depressive episode that started when I was ten, and I had my first manic episode very shortly after turning fourteen. I don't even remember anymore how old I was both times I attempted suicide. I'm sure if you're curious I mention the age I was somewhere in another blog entry. Right now my brain is fuzzy and I can't remember.

In the past three years, I've spent many a night crying and fighting the urge to act on swallowing a bottle of mouthwash, bleach, all my meds, or ending it with a beautiful scarf. I'm not suicidal right now. I haven't been for quite a while. But my mind, since I was thirteen, constantly makes note of the nearest sharp objects, and the nearest items I could kill myself on. I don't have to be suicidal, I don't have to be in an episode. I don't have to want to cut. My brain just automatically constantly notices these things. It's so second nature, it's not something I try to do. It just happens. It's constant and I hate it.

I've gone forty-one days without self-harm. I'm very proud of this. My mind is still on it all the time, though it gets easier to say no to the urges the longer I go without cutting. There are triggers everywhere. I feel like an addict, I think about it all the time. Sometimes the thoughts are unwanted, other times I crave it so much, but I know it's just not a good thing to do. It's a bad coping mechanism. So I fight it, I have to. I fight it constantly.

It's when I'm by alone that I cry, shake, and express how I really feel on the outside when I don't have to be strong for anyone, I can turn into the quivering and crying mess I am inside. I'm able to get in touch with my actual feelings and face them when I'm alone. When people are around I have to appear strong, I have to laugh, I have to try and look like I'm paying attention to what they're saying while in my head I'm drawing a box cutter slowly down my legs and beautiful red blood is spilling everywhere, sticky, warm, and gorgeous. It only makes the draw toward cutting worse knowing how low the chance is from bleeding out if you cut in the right areas, but it is hard to control sometimes once you start, so there lies the danger, as well as the danger of infection. That's not even mentioning unsightly scars.

This is the sixth day in a row I've been depressed, but these six days have felt more like six months. I can feel myself sliding downward, but I'm completely down yet. For it to qualify as a depressive episode in someone with bipolar, you need to have depression for two weeks. Hopefully, I can kick this before it turns into an episode. In general, I usually get hit with a depressive episode that starts sometime between September and November that usually goes away in March or April. By Thanksgiving, I'm usually fighting suicidal feelings. However, I still love Thanksgiving, though there have been two of the last ten years I stayed in bed nearly all day because I was so severely depressed I physically couldn't get out of bed. I've been feeling very anti-social, angry, and very irritable lately. My pain levels have been very high, and my fatigue horrible. That doesn't help my depression any.

From the movie Don't Kill It
I recently watched a B horror flick called Don't Kill It. (Spoilers following.) In it, a demon takes possession of people's bodies. When the demon takes possession, their eyes turn all black and they let out a guttural scream, before killing everyone in sight. In the end, instead of killing other people, one person gets possessed and while floating in the air, she throws back her head and lets loose the sounds of Hell, before the grenade she's holding explodes, and her body parts fly everywhere. I feel like I'm that last person. I don't feel possessed, rather I feel like if I don't keep a tight lid on everything I'm going to float up into the air, throw back my head, let loose the throaty, guttural, howls from the bowels of despair, and explode, with my body parts flying everywhere.

I feel like there's more to say, but I'll stop here.


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