My Journey With:

Ehlers-Danlos Syndrome Hypermobility Type (H-EDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Partial Complex Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar type I Rapid Cycling ~ Migraines ~ Obsessive Compulsive Disorder (OCD)~ Keratosis Pilaris (KP) ~ Post-Traumatic Stress Disorder (PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Piezogenic Pedal Papules ~ Hypothyroid ~ Seasonal Affective Disorder (SAD)

Thursday, September 22, 2016

Walking upstream

I feel like I'm in water, and I'm trying to walk upstream. Every tiny movement takes planned effort, I can't even type very fast. It's hard to think. DH is making my dinner as I write. He's making Progresso tomato basil soup and grilled cheese; comfort food. I feel numb. I am having a hard time connecting to other humans mentally. I feel as if my world is shades of gray emotions, and at the center there's a black hole.


Wednesday, September 21, 2016

She wasn't okay at all


Tonight, I feel fragile and alone. I want to reach out to some of my friends online, but I don't want to grow dependent on them, and I don't want to be a burden, either. I don't know many people here in town, and I have a hard time with mobility, so I can't get out often. My friends online are the only people I socialize with on an everyday basis. There's also that chance that when you let your guard down, whether online or in person, and people see the real you; the terrified insanity inside you that you constantly feel, they may never want to talk to you again. Even worse, sometimes they'll tell everyone else you know, and maybe even people you don't know. Strangely enough, if someone messaged me offering support, I would be at a loss on what to say, mostly because I don't want to burden them or scare them until they think Amy's just a freak. I miss my ex-best friend so much. I love her so much still, just as much as a sister, but as a dysfunctional sister I can't be friends with. After her last suicide attempt I contemplated for hours the best way to kill myself so I didn't have to go through another of her suicide attempts and wonder if she'd live next time. A few weeks after that, I finally realized the friendship was incredibly unhealthy, and I could no longer do anything to help her. Constant suicide threats from her made me wake up crying with nightmares about her committing suicide at least twice a week. I decided that I can't ever get to that point again; where I depend so much on someone that the loss of them would destroy who I am. I depend on DH that way, but only him. I cut ties with her awhile back, but miss her so much. I just think that the friendship was too dysfunctional, but that doesn't mean I no longer love her or feel like she's a sister. I wish I could explain everything to her, but I'm afraid that would be the last straw, and I'd be the cause of a completed suicide. It was better to not go into details with her, and leave things simple and clean, even if it makes her hate me.


The only person I know I can depend on is DH, yet he's been going through so much stress lately that I don't really have the option of spilling my heart and mind, and all the madness inside, to anyone. I'm an excellent actress, most people will have no idea I'm depressed if I don't tell them. A pdoc (psychiatrist) can't even read me when I don't want them to. I don't think I've ever met anyone who can tell when I'm depressed when I'm trying to hide it. Not even DH or my mother can tell if I'm trying to hide my depression.

I wish the terrible thoughts always running through my mind would go away. I wish I wasn't either angry, numb, or depressed all the time. I wish mental illness was something people had no problem talking about, without becoming the "other" for talking about my experiences. I wish the shame I feel would stop. I feel like I have to put on a show for the world, then quietly wipe my eyes before anyone enters the room, or softly cry myself to sleep again. I wish people noticed Amy's not doing good. I wish there was a way I could find help that didn't mean start a medicine, wait a month, see if it's made a difference,

I'm not suicidal, but I do often wish I could go to sleep and never wake up. I often wish I could just cease to exist. I feel guilty because I have DH and that means I shouldn't want to cease to exist, and I hate myself for it. Shouldn't I be satisfied? I'm with the love of my life but all I can think about is ceasing to exist. What kind of horrible person am I? This bipolar beast inside of me that hungers for causing me pain, constantly rages at me, telling me I don't deserve love, or nice things, because I'm a worthless human being who only steals oxygen that could be used to give a more deserving person that air to breathe.

I feel rambling, lost, and my soul aches. I feel like I'm experiencing my childhood nightmare that I had all the way into my early 20s. I'm stuck, surrounded by fire on all sides. There's nowhere to run, nothing to do except accept the pain coming to you. You're going to burn alive, and there's no way out of the mind. Insanity envelopes me, reaching it's tendrils into me, burning, constantly burning.


Wednesday, July 6, 2016

A letter to my Grandpa, on this hot summer night

Grandpa March 1, 1935 - May 16th, 2008
Grandpa
March 1, 1935 - May 16th, 2008

Dear Grandpa,

I've been thinking about you a lot lately. The other night I cried myself to sleep, because even though it's been since 2008, I can't believe you're gone. I still get angry at the person you were before you got old, because that man wasn't a good person, not at all. However, age, poor health, and watching your wife of over 50 years slowly die, changed you into the type of person I'm very proud to be related to. I hate that it took hardship to change you. I hate that I missed out on all the years I could have spent with you, if you'd just been the same man you were when you were old, but when I was a kid.

You built the most beautiful earth home, but I always wondered why you never opened windows anymore once Grandma got sick. I guess it was depression. The house was beautiful, and felt very homelike, not like it did when I was little. Right now I'm imagining myself sitting on the screened in front porch in the dark. You're taking itty bitty sips of coffee, which you're not supposed to do with your feeding tube, and you are playing old songs on your harmonica. After awhile it's quiet, and we sit back and listen to the sounds of the Ozarks at night. We can hear the bullfrogs croaking down by the pond, and crickets making their own noise. In the distance we can hear a whippoorwill. Whippoorwills always make me think of Grandma for some reason. In front of the screened in porch stands a statue of The Blessed Virgin Mary in a grotto. She's surrounded by roses, and lit up with a blue light. By the pond I can see your flags, there's a spotlight on them, so they're easily visible in the dark. The American flag flies high, and below it the POW MIA flag. I know you still wear the name of a Vietnam vet infinitely MIA on a bracelet around your wrist, so as long as you live he won't be forgotten.

My Grandpa on a United States Navy ship
My Grandpa on a United States Navy ship

I wish that's how my night was going. I wish you hadn't died, but I understand why you wouldn't have wanted to live any longer. Your heart was breaking, and I know you suffered a constant ache in your soul, knowing there would be a day that your wife would no longer recognize you. I don't know if she still recognized you when you passed or not. I hope so. I desperately hope so, but I don't want to ask my mom, because I'm too afraid of what the answer will be.

I won't ever visit your grave. Knowing you were probably buried with formaldehyde in your veins, that your body is unnaturally preserved, makes me want to vomit. I can't deal with that.

I'm having such a hard time with nightmares still. Since you died in 2008 I've had at least three nightmares per week where I'm trying to get to you, only to find you dead right before I get there. I don't know if you knew how much I loved you before you passed. I bought you an Easter card in 2008, and forgot to mail it. I remember telling myself I'll save it for next year, instead of mailing it late this year. A month and a half later, you were gone. I should have sent the damn Easter card late. I think about this all the time. If only I had sent that card and wrote in it how much I love you, then I'd know you died knowing it.

My Grandpa and Grandma at their wedding
My Grandpa and Grandma at their wedding

Do you know that I don't know anything about what you did in Korea? I know what boat you were on, but I only know that. I know you loved corn fritters and coconut cream pie, and if you'd come back, and could eat again, I'd make them for you as often as you could eat them.

Sometimes I dream that I arrive at your home, only to see the pond overgrown with algae, and the no longer mowed grass has turned into just hilly fields. I always run into the woods first, looking for you, but of course you aren't there. Sometimes I run into the house, and other people live there, or sometimes I see your decaying body in an armchair, only to find Grandma dead in her bedroom. I can't wake up from these nightmares, and I feel like I've lost you hundreds of times. I've been told I don't deal with death well, but does anyone?

I know you were a faithful Catholic, going to Mass on Sundays, and were trained to take the Mass to Grandma in the nursing home. The Body of Christ (The Eucharist) had it's own little pouch that you had to return on Monday. You believe in a Christian Heaven, and that's where my mom believes you are now.

Everyone in town looked up to you. Whenever I told someone who my Grandpa is, they always had a high opinion of you, even back when you weren't a nice man. There were so many times that even when my own parents didn't believe in me, you did. You'd tell me not to listen to what other people said, that I can achieve my dreams, and that I'd be a good mom someday.

I know I have to live with just these memories because I can't make any new ones with you. You'll never get to meet DH, or your future great-grandchild when I have a baby someday. I'll keep your memory alive, though. As long as I live, in a way, you will, too.

Love,

Amy

My Grandpa and the model ship he built
My Grandpa and the model ship he built

Wednesday, June 8, 2016

“Defeat,” a poem

“Defeat”

Signing forms, initialing, dating
Don’t smile for the camera
Strip.
I’m not a criminal, I mumble, defeated
They say it again:
Strip.
Shredding off dignity,
Not making eye contact
See? I told you no track marks.
Gritting my teeth when asked about identifying marks
I don’t mention the birthmark
on the cheek of my butt
Haven’t I been violated enough already?
They snap pictures of all the scars
The scars are all over,
more than a hundred in varying stages of healing
They seem to photograph me forever,
though I’m still not sure why
They were cold
Not rude, but not nice either
They look at me strangely,
as if they’d never seen scars before
“Why did you do this?” her accusing eyes demand
The cat just scratched me, I’ve claimed in the past
My dog jumped on me,
leaving cuts of course.
I’ve used that one, too.
Once I said a horse attacked me.
Another time that I was the survivor or a horrific car accident
But here, there’s no reason to lie,
they know where the scars came from
I felt like I was being arrested.
I’m pretty sure I was also fingerprinted that night
but at a certain point things get fuzzy
Next, the unit
Patients with a glazed over expression sit in the lounge
Further down the hall I hear screaming,
which I try my best to ignore
The doors automatically slam shut,
locking behind me
I’m alone now,
with only the clothes on my back
My suitcase, my earrings, and even my watch have been seized
I’m so scared I’m shaky
Nauseous, but I don’t throw up
I’m scared to sleep,
sleep is vulnerability
I’m scared to stay awake,
continuing this mad descent into hell
My pillow is flat and hard,
my mattress is two inches thick
For the millionth time,
I’m frozen in indecision
What do I do?
What do I do now?
Hopeless, I exist.



Friday, May 27, 2016

"Storm," a poem

I wrote "Storm" last week while struggling with suicidal ideation. Suicidal ideation is when a person has suicidal thoughts and ideas, and perhaps even a detailed plan, but are not planning on acting on those feelings.



"Storm"

Gray skies defeat me slowly
smothering out any life left within me
Ravens in the trees stare down at me
yet my mind tells me they’re vultures waiting to feed on my carcass
Sometimes I cannot trust my mind

My womb is empty
I have baby bottles stored away for someday
but they’re gathering dust hidden away under my bed
I’m getting scared that day will never come
when a child fills my womb

I’m lost in the thunderstorm now
My eyes make out demons
eating rotting human corpses in the near distance
Is this something else my mind is lying about?
Or are these horrible images real?

I stare transfixed at one,
until she turns toward me, bloody lips grinning
My head hurts
There’s a buzzing in my ears

Suddenly I find what I’m looking for,
the edge of the plateau
I make one last desperate plea to myself
Is there anything left that makes living worth it?

I already know the answer
Head back, clothes soaked, a guttural scream
Escapes my lips, and I fly
to the desert floor

Soaring to the godless ending


Depakote: One Full Month

Image: Me
Me
I have now been on my full dose of Depakote (divalproex sodium) for a month. Today is May the 26th, while I started it on 26th of April. I was expecting to have reached my weird sort of "normal" by now, but I haven't. While in the past week I've had some times that are only moderately depressed, I still spend time in the deep depressions, though they've even deeper than before. I'm trying hard to concentrate on progress, but since there really isn't that much progress it doesn't leave much to concentrate on. I feel like so far the only thing the Depakote has done for me is widen the expanse of my moods. My deep depressions are deeper and scarier, and way more fucked up on a bloody visceral level. I feel as if I really stand out in social situations lately, at least for the most part. I have a hard time relating to humans of all ages, and now it's even getting harder to relate to the cats. I'm broken, and I'm scared. I think everyone around me can sense how poorly I am at being social, at my incompetence in human interaction. My patience for everything is really short.

I wrote down all of the side effects I'm having from the Depakote. They are as follows:
  • confusion
  • joint pain
  • lower back or side pain
  • muscle aches and pains
  • nausea
  • nervousness
  • breast pain
  • shakiness in the legs, arms, hands, or feet
  • sleepiness or unusual drowsiness
  • unusual tiredness or weakness
  • clumsiness or unsteadiness
  • dizziness, faintness, or lightheadedness when getting up from a lying or sitting position suddenly
  • dry mouth
  • fast, irregular, pounding, or racing heartbeat or pulse
  • indigestion
  • lack of coordination
  • leg cramps
  • muscle pain or stiffness
  • muscle tension or tightness
  • pains in the stomach, side, or abdomen, possibly radiating to the back
  • Acid or sour stomach
  • loss of memory
  • problems with memory
  • back pain
  • excess air or gas in the stomach or intestines
  • oily skin
  • acne
  • limbs easily "fall asleep" and are "on pins and needles"

My Niki kitty has been depressed lately, too
My Niki kitty has been depressed lately, too
The side effects involving pain are increased pain, above my normal levels, and of a particular type. I quit having unconscious eye movements, so that's good. But I'm passing out a lot, and dizzy and am presyncope more often. I'm not sure how much of the dizziness, presyncope, and fainting are from my POTS, how much are from my Depakote, and if the POTS and Depakote are interacting poorly. 

I passed out in Wal-Mart the other day, so that was quite embarrassing. I fell flat on my face and came to with a huge crowd of people around me. Hopefully there's no video of me passing out at Wal-Mart currently making it's rounds on the internet.

I'm not sure what I'll do.

I'm having a very hard time writing this, because it's difficult to think. I've been working on it for four hours, and I already had the list made.

Tuesday, April 26, 2016

Depakote leaves me existing

Since I've had to go back on Depakote for my bipolar, trying to get pregnant had to be put on hold until the medicine can stabilize me for awhile before I go off of it and try again to get pregnant. Depakote can cause a lot of birth defects, including spina bifida, which is when there is incomplete closing of the backbone and membranes around the spinal cord. It also can cause a hole in the heart called atrial septal defect,  (an abnormality in the opening of the urethra in boys called , extra fingers ocleft palate hypospadiasr toes (polydactyly), and craniosynostosis (where one or more sutures on a baby’s skull close prematurely). From that short list you can tell how serious and dangerous it is to get pregnant while on Depakote. This is really depressing me. Depakote can also mess up your menstrual cycle, so no more peeing in a cup to find out if I'm ovulating. At first I thought I could at least keep track by checking for ovulation each month, but when I find out Depakote messes with your reproductive system that idea flew out the window. I feel so useless, like I just have to exist until I can go off of it and try for a baby again. I honestly don't feel I'm doing more that existing at even the best times, since I went on Depakote. Everywhere around me I see new life, both plant and animal life outside are growing, I have at least two pregnant friends, and I have friends with adorable children, from toddler age to elementary school age. By the time I'm off Depakote I'll be 35 years old. All women know about the magical yet dangerous age of 35, when your fertility drops drastically and your risk of many genetic diseases, including down syndrome, increases. I want so bad to go off the Depakote, but it hasn't really even started working yet, and I've been doing horribly for months. I haven't been able to kick this depression on my own, so I had no choice but to have a medication change. That doesn't mean I'm happy about it. I feel useless, and cannot portray the heartache I feel in a blog, and I'd deny it in person. I feel like my who life is on hold until I can try for a baby again. My tears are flowing freely now. I just can't explain this heartache. I'm constantly seeing pictures of people posting pictures of their sonograms and positive pregnancy tests. I'm so afraid that with my age and PCOS I'll never get to have a baby, and I can't even imagine how I'd feel then. I want to stress that I'm very happy for all my friends with kids and who are pregnant, but I wish I had the same happiness they get to experience. It's a horrible feeling to know that something you want so, so bad you may never get to have. 

Friday, April 22, 2016

Happy Earth Day!

Today we celebrate celebrating the Earth and how to save her before it's too late. In Greek mythology, the Titan Gaia was the personification of Earth. She created not only the Earth, but the whole universe. Her Roman equivalent was Terra. The idea of an Earth Mother stretches across the world, with Phra Mae Thorani as the Earth Mother in Southeast Asia, in the Cook Islands She's named Papa, the Norse call her Frigga, the Celtics called her  Danu, and the Egyptians called her Isis. The Earth itself has inspired many people, over thousands of years, and hundreds of cultures. Even today, we are inspired by her, and so many of us feel the need to protect her from garbage, pollution, and global warming.

It's important to do something for the Earth, whether it's recycling, planting trees, or making a compost pile. If you are able to bike to work instead of drive, do it. Or maybe you can walk to work instead. These options have the added benefit that they're a great way to stay in shape. I drink a lot of soda, so we recycle soda cans. I plan on reusing paper again, like I used to. Just make sure you put all recyclables in the appropriate place, for instance there are many types of plastic, and they can't be mixed together. To read a lot more about recycling, visit RecycleBank. If you take part in their learning exercises you'll score points to get free things, like magazine subscriptions. 

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