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 ~ 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)

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. 

Monday, April 4, 2016

Exceedingly dizzy

Today I've been so incredibly dizzy it's amazing. During the night I tried making it to the bathroom,
and I ended up falling and hitting the edge of my altar and hitting my right eye. So now I have a big bruise and it hurts, especially with the pain and swelling under my right eye.

I've decided to stop the Depakote, because the side effects are so bad I already can't do it. I'm shaking so hard you can see my muscles jump, I'm incredibly dizzy and can't think. In fact my blog is pretty much horrible, but I'm having Jim help me by fixing it.'


Saturday, April 2, 2016

Depakote Side Effects Number Three and Four

My Depakote ER has not only caused incredible thirst, sleepiness, and fatigue, but now I have two more expected side effects. I'm now hungry all the time and my dizziness is way worse than usual. I fall nearly every time I get up from dizziness from my Depakote and dysautonomia at one the same time. While my POTS makes me dizzy most of the time, this is way more dizziness than I usual experience. I've been falling asleep all day long while sitting up. I'm so, so sleepy and dizzy! I'm so hungry all the time my stomach hurts and all day I've been thinking of food. I haven't experienced hunger of this size since my mid-twenties when I was on Depakote and Zyprexa. I have to reign in those strong urges to eat, or I'll gain a lot of weight, like I have other times while on Depakote. I did eat an ice cream cone, so no more ice cream, chocolate, cake, pie, or anything until next Saturday, and then I can eat one sweet. I need to start exercising on my recumbent bike again, there's no excuse not to, even if I'm in pain or depressed.


Friday, April 1, 2016

Dry mouth, fatigue, and New Year's Resolution update

Once I take my night medicines, I will have been on Depakote ER for three days. So far I've taken two doses, on Wednesday and Thursday. Today is Friday. Today I started experiencing my first two side effects of Depakote. The incredible thirst, more so than any other dry mouth I've ever encountered, is a huge side effect of Depakote and Lithium, at least for me. Some people even lose their teeth on Depakote or Lithium because their mouth is so dry. I constantly drink huge amounts of water. When the dry mouth gets really bad in your sleep it feels like it's so dry your throat is sticking together. Obviously it isn't really sticking together, but my tongue and teeth do get stuck together because they're so dry. I refuse to ever take Lithium again, and I will never consent to ECT (electroconvulsive therapy), but if you are in a psychiatric ward, you often have no choice on what medication or treatment you will receive, and that includes taking Lithium or getting ECT against your will. That's really scary. I plan to do a blog soon on what it's like to be in a psychiatric hospital, and it will not be a positive story. DH has a Healthcare Medical Advance Directive on my and I have one on him, so if one of us aren't able to make a healthcare decision, the other can. However, when it comes to psychiatric hospitals they actually don't have to listen to the patient, or who the person the Advance Directive put in charge. I don't think that should be legal, but it certainly is.

The second side effect I started experiencing today is sleepiness. I have been falling asleep sitting up or lying in bed sleeping most of the day. It's very annoying, but it's still not as bad as tremors, stomach pain, or the constant insatiable hunger.

Me being on Depakote means that we are having to put a hold on trying for a baby. This really depresses me a lot. I think because of my PCOS my hormones are very badly off, but I've got hope that they can fix them. I don't see a reason to go to the doctor about my hormones being off until I'm more stable and I can go off the Depakote, which can cause severe birth defects. Depakote can also mess with your menstrual cycle.

Once my moods level out, I will be better at exercising, because lately I've just been too fatigued from pain and depression to get off the couch. I want DH to blow up my exercise ball, I plan on going back to my recumbent bike. Someday I want to be strong again and jog. I know a lot of people say that isn't possible, but they're wrong. I know I can do it, and I will do it.


Oh, and it's been awhile since I've talked about my New Year's Resolution. I haven't ridden in a scooter at Wal-Mart or anywhere else, and my wheelchair is actually dusty! I've been using my cane whenever I can, and using my walker everywhere else, like in stores, no matter the size. I'm very excited. I've also lost enough weight that if I'm not constantly pulling up my pants they fall down around my knees, taking my underwear with them. I plan on looking through my drawers and closet to see if I can find some jeans a size smaller. So that's good news!

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