My Journey With:

Ehlers-Danlos Syndrome Hypermobility Type (H-EDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Epilepsy ~ 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)

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!

Thursday, March 31, 2016

World Bipolar Day

Today was World Bipolar Day, but because it's 1:03 am I technically missed it. However, I still want to talk about World Bipolar Day.

First of all, bipolar (aka manic depression) isn't just being moody, it's not being "sad," or being "hyper." It's so much more than that. I've gone into this before, and at the moment am not thinking clearly to write about the same thing again. Learn about the very basics from an infographic here. If you want to read about what it feels like to have bipolar, read about it here, or if you want to know what it feels like to get a bipolar disorder diagnosis, read this. If you think you may have bipolar, someone you know may have it, or you are looking for resources on bipolar disorder, try reading this.

I'm in the fifth month of a bipolar depressive episode. Today I finally got in to see my psychiatrist, and she added a mood stabilizer that has helped me in the past to my medication regimen. She added 1000 mg of Depakote in the evening. My biggest concern is the weight gain it can cause. I gained a lot of weight on it before, but I also lost over 100 lbs while still on it. My other concern is the tremors it used to give me returning. Around August 2008 I went off of Depakote after years of taking it. My tremors continued for months, and it took two to three years before they finally went away. Even now, when I get really upset, the face tremors come back, which is something I never had before Depakote. Depakote in the past has made me shake like crazy, including my face muscles. It got embarrassing when people would constantly assume I was scared and shaking in fear or something was terribly wrong with me and it was a medical emergency. One person even worriedly asked if I was scared of them. Each time you're on a medication the side effects can be different, though are often the same. I'm really hoping if the tremors come back they aren't as bad as they used to be.

I know this isn't a very long entry, but with this depression it's incredibly hard to think. It's like drowning in a sea of molasses. Just writing this much has taken a lot of courage and hard work. 

Tuesday, January 19, 2016

A Day in The Life: Bipolar Depression and Chronic Pain

As you may know, I've been dealing with a bipolar depressive episode lately. You can read about my recent struggles here and here. If you suspect you have bipolar disorder, you can take a screening quiz with resources here, or to learn more about bipolar, NIMH (National Institute of Mental Health) has a very informative fact sheet about bipolar here.

Me. Sorry about the picture quality
Me. Sorry about the picture quality
Yesterday I decided to write down everything I did, so my readers can get an understanding what  it's like to be disabled with both mental illness and chronic pain.My pain is a lot worse today than it was yesterday. Today I've cried twice already from pain, as my pinched nerve in my neck pain is back, and shooting pain down my right shoulder, arm, and thumb. I plan on going to the doctor for it soon, since it started the first week of December. The fatigue I'm experiencing is incredible, because of my POTS (Postural Orthostatic Tachycardia Syndrome), SAD (Seasonal Affective Disorder), EDS (Ehlers-Danlos Syndrome), and depression. I actually can't get off the couch to go to the bathroom, even talking is hard at times. Right now I'm using every bit of my strength to write this blog. I've been very open about my depression this time. I think it's really important that people with bipolar or depression know that they aren't alone, and others experience the same exact symptoms, even the really scary ones. I want those people to know that they are never alone in this fight. I'm also being so open about my depression because I want people who don't have a mood disorder to understand what monster we're fighting.

This is really hard for me to write, because I am opening up on very personal things, and I realize that some cruel people will think that it's just funny. I'm prepared for that. So, here goes:

7:30 am
     * Take first set of morning meds
     * Strip down and weigh myself, then put clothes back on
7:38 am
     * Back to sleep
12:22 pm
     * Wake up
     * Take second set of morning meds, but only the ones I can take on an empty stomach
     * Get dressed, brush hair, moisturize face
12:54 pm
     * Use my 10,000 lux lightbox, which is the best treatment for SAD
     * Color a little bit in my adult coloring book, but feeling too distracted to color much
1:29 pm
     * Cuddle under blankets on the couch, switching between my Kindle and very old laptop (it still runs Vista)
     * Very upset at the irrational fear that my top row of teeth were going to find out. I have panic attacks over this.
3:15 pm
     * Banana for a late breakfast
4:00 pm
     * Cry for 1st time today over bad memories and self-loathing
4:16 pm
     * Took remaining moring meds (the ones I have to take with food) because I forgot when I ate my banana
4:27 pm
     * Cry for the 2nd time today over sadness and dispare
4:56 pm
     * Cry for the 3rd time today over sadness and self-loathing
4:18 pm
     * Niki and I cuddle each other on the couch, dozing off, waking up, and dozing off again
6:20 pm
     * Stared of in space on the verge of tears until 7:35 pm. I have no memory of that time, my memory goes from Niki on my lap to watching The Office. The time in between that is lost.
7: 35 pm
     * Watching The Office and occasionally messing around on my computer
8:05 pm
     * Dinner (2 pieces whole wheat bread, 2 baked frozen crunchy fish fillets, 1/2 cup baked frozen fried okra, 3 tablespoons ketchup, clementine orange)
8:36 pm
     * From panic attack to bipolar psychosis:
          * Cry for 4th time today because of a panic attack
          * Hallucinated dead fish piled on my desk
          * Convinced I was a hologram and I didn't really exist
          * Cried for 5th time today from fear
12:30 am
     * Washed face, brushed teeth, moisturized face
1:10 am
     * Got out night meds and tomorrow morning's meds for both DH and me
     * Made mistake getting out the meds because it's so hard to think, I gave DH one of my meds he's allergic to, but fortunately he caught the mistake before he swallowed them.
     * DH checked the other meds I got out and found no more problems
1:15 am
     * Took night meds
     * Moisturized face and lips
     * Relaxed with my Kindle in bed
2:30 am
     * Lights out and going to sleep
If you'd like to know more about bipolar psychosis, you can learn more here and here, and you can learn about delusions in people with bipolar disorder here.

This was an incredibly hard blog to write, as going public with these symptoms often cause shame. However, I feel a lot less shame than I used to because it's so important to me to spread awareness of bipolar disorder and what it's really like to live with it.

I hope opening up about this will help at least one person. I'm taking a big breath and hitting publish.

Sunday, January 17, 2016

Walls, tears, and masks

"Brand" by April Mansilla
"Brand" by April Mansilla
I feel so alone and scared. I'm not alone, Jim is here in the other room, but inside I feel like I'm cut off from the world behind a wall I can't break through or see through. Behind this wall I'm screaming, and punching it, but it only hurts my hands, there is still no way to get through it or past it. I feel like this depressive episode will never end. It was preceded by a hypomanic episode, and now I'm scared that when this depressive episode leaves then I'll become full on manic. I don't know which I hate more, depression or mania.

Some days I'm afraid reality will unravel and it will just stay that way forever. I'm scared a lot. I feel empty and dark inside, except for the sudden rages of anger and loathing directed at myself. I cry all the time. If I'm not crying from depression and anxiety I'm crying from pain. I wish EDS would leave me alone when I'm battling my bipolar, but it just doesn't work that way.

I'm so cold, and it reminds me of some really bad memories that keep flooding back that I'd much rather stayed way back in the corner of my mind so I don't have to think about it. I don't know what to say to anyone at the moment, except it means a lot that you care. It means a whole lot. 
I'm being much more open with this episode online (not IRL) than ever before, because I want people to know what it's really like to have bipolar. It's not manic pixey funky girl stuff, it's like a heavy, heavy boulder on your chest. They keep adding boulders, but it doesn't kill you, and they just keep adding these heavy boulders. Occasionally they'll take a few off, but it's just a cruel joke, because after that they'll add twice the boulders. You will keep existing this way, the boulders themselves won't kill you, they just make existing hell.

And through it all I fake smile and fake laugh so well that no one who sees me, unless I tell them otherwise, can see through that mask. I've been hiding it so many years I don't even know how to not wear a mask anymore, and it feels unsafe to take it off. So much of my life a mood episode meant I'd be emotionally and verbally abused while I'm at my weakest. So out of necessity I became really good at hiding behind that mask. Now I need help, but I'm just too terrified to let someone really see me (other than Jim) that I can't help but fake laugh. Fake smiles and fake laughter is so easy a part to play that eventually it's just too scary to let anyone see you IRL (and online to an extent) as I really am: alone, cold, depressed, self-loathing, defeated, numb, and crying.


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