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 ~ Migraines ~ Keratosis Pilaris (KP) ~ Eczema ~ Bruxism ~ Irritable Bowel Syndrome (IBS) ~ Post-Traumatic Stress Disorder (PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Hashimoto's Disease (Autoimmune Hypothyroid) ~ Seasonal Affective Disorder (SAD)

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.

Wednesday, January 13, 2016

The Sound of Silence (Original Version from 1964)

"The Sound of Silence" 

Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

And in the naked light I saw
Ten thousand people maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never shared
No one dared
Disturb the sound of silence

"Fools," said I, "you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you"
But my words like silent raindrops fell
And echoed in the wells of silence

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said "The words of the prophets are written on the subway walls
And tenement halls
And whispered in the sound of silence"

Written by Paul Simon

Performed by Simon and Garfunkel



Tuesday, January 5, 2016

My Raw Feelings and Experiences With Bipolar Disorder

I had a hypomanic episode in November, which by late November or early December it turned into a depressive episode. I've been depressed for quite some time. It's only been a few weeks, but it seems like years. Sometimes I'm numb inside, other times I'm drowning in an unbearable dark sadness. I'm having panic attacks a lot, and when my pain is bad it gives me more anxiety than normal, and even more panic attacks. I feel so utterly alone inside. I don't like being awake and conscious. I feel like the world around me is happening like usual and I'm an invisible lost person standing in the thick of it, shouting and waving my arms, while understanding but not understanding how everyone else goes about so normal. DH has been wonderful to me. Some days he's the only person on Earth I'm not irritated with.

Some people don't realize that irritation is also a symptom of depression. A bipolar person being irritable to you when they're depressed doesn't necessarily mean you did anything wrong, and it doesn't necessarily mean they are really angry with you. When you're bipolar and in an episode your world view can get so messed up that it's like looking through a kaleidoscope. It's just as hard for the bipolar person to know how they'll feel in 10 minutes as it is for you to know. If we could control our moods, we would, as no one wants to suffer the roller coaster bipolar disorder takes them on.


I have chosen to be on Geodon for the past eight years, which is an atypical antipsychotic. Most bipolar people I've met have been on an atypical antipsychotic because it also helps stabilize bipolar moods, even though it was invented to help with psychosis in schizophrenia. It also fights bipolar psychosis, something that is still frowned upon for speaking out about. Geodon has the least side effects of all of the atypical antipsychotics. It is weight neutral and has a lower chance of causing diabetes and metabolic syndrome than the other atypical antipsychotics. However it can cause QT prolongation (a heart rhythm problem), and must be taken with a full meal. The chances of QT prolongation increase when taken with certain medications, like benedryl. I've used other medications that controlled certain aspects of my bipolar better, but the side effects were unbearable. Geodon doesn't do a lot for my hallucinations, but it seems to be pretty good at keeping mania and hypomania away. Of course sometimes I'll still get manic (I have bipolar 1) or hypomanic. My medicines don't seem to do as well for my depression. I don't want to go off my anti-depressant, Cymbalta, because it also fights fibromyalgia pain. I'm on Lamictal as a mood stabilizer and for my seizures. Trileptal, another mood stabilizer that I've found helps, also fights seizures, but there are more side effects and you can't take muscle relaxers with it. I also don't know if it will have my seizures under control, and I don't want to mess with my Lamictal now that I finally do have them under control. So, honestly, I have no idea what to do. I see my doctor this week, so I'll obviously be talking to her about it.

People want to hear about these romanticized versions of bipolar, ones that don't exist in real life. Yes, most people with bipolar are gifted artistically, but there is so, so much more to it than that. Bipolar isn't a romantic disorder of intense feelings and a quirky personality. Bipolar is when you find yourself hugging your knees on the floor of the bottom of your closet, because you don't want anyone to hear how loud you are crying. Bipolar is when you max out your credit cards in a month. Bipolar is seeing demons run at you, faces coming out of the wall, and seeing huge bugs everywhere that aren't really there. Bipolar is driving 100 mph down the interstate racing some rednecks you've never met. Bipolar is pain, both mental and physical. Bipolar is when you go to an important function, and you either make a fool out of yourself because you're manic, or you cry through it all because you're depressed. Bipolar is knowing you may never be able to breastfeed because all psychotropic medications are secreted into breast milk. Bipolar is knowing that after giving birth you're at high risk for postpartum psychosis, which is extremely dangerous. Bipolar is not being able to make friends because other people can tell there's something different about you. Bipolar is being told by your mom you "look like a r*tarded person" because you have no facial affect (don't show facial expressions) when you get very, very depressed. Bipolar is constantly having one suicide plan and a back up one, just in case, even when you're doing great and have no plans to die. Bipolar is being asked in public in a loud singsongy voice "Now Amy...did you take your meds today?" Bipolar is knowing all your relatives are talking about you in a bad way for something you can't help. Bipolar means not being taken seriously by doctors because once they hear that diagnosis they attribute every single symptom you have to bipolar and look no further. Bipolar is rapid large amounts of weight gain from medicines, then looking in the mirror and seeing a round face you don't recognize. Bipolar is the shame you feel when people you saw six months ago no longer recognize you from the weight gain. Bipolar is when you've had sex with three strangers that month when you were a virgin the month before. Bipolar is having to not fulfill promises sometimes because you can't rely on your own mind and how you will be psychologically from one moment to the next. Bipolar is experiencing something called a mixed episode, that has elements of both mania and depression, and is very hard to treat. Bipolar is rocking under the desk and crying on your fifth visit to the psych ward because you don't want to be there and the only person who would really talk to you at all got discharged. Bipolar is anger you don't know how to handle, so you turn inside, then punish your body with sharp instruments, followed by severe guilt, embarrassment, shame, and self loathing...for the past twenty-one years. Bipolar is becoming a great actress, so no one on the outside will know there's something broken about you. Bipolar is daytime sleepiness from medications to the point of falling asleep driving, and very often not sleeping at night while you brain races. Bipolar is coming up with the best idea in the whole world, only to realize when the mania is over the idea was just idiotic. Bipolar is that vile thing that took my dreams away. It didn't just take my dreams away, but crushed them, forcing me to find new dreams. These are all just a portion my experiences being bipolar.  It can happen to any gender, and race, any class, anyone. Once you get it then it never goes away. It can be managed. That's what they tell us anyway, and we're supposed to believe it.


Thursday, December 31, 2015

Last entry of 2015

In a little less than two hours, 2015 will be over, and we'll enter 2016 with high hopes for a good year. This year hasn't actually been that bad for me, I've definitely had worse years. Christmas this year was wonderful, we were able to give each other presents by saving up and buying the presents slowly started months before Christmas.

I made Armenian Darehats (pronounced ‘dar-ee hots’) bread. It's supposed to bring good luck for the New Year. We also bought a pomegranate, which has also been associated with good luck, especially in the New Year, in Turkey and Mediterranean cultures for centuries. Darehats traditionally have a hidden coin in them, and the person who finds it in their slice is said to have especially good luck and have increased fertility that year. However, DH has a lot of fillings, and said that a coin wrapped in aluminum foil would hurt his teeth, besides the fact that anyone can break a tooth or swallow the coin. That made a lot of sense, so I left the coin out.

The one in the roaster oven was a bit dry, but I think I cooked it too long. Next time I'll add more liquids to it and not cook it as long.

Happy New Year dear readers!

Darehats made in the roaster oven
Darehats made in the roaster oven

Darehats made in my slow cooker

Sunday, November 29, 2015

Pinched or irritated nerve in shoulder

Shoulder Pain
I've got either a pinched nerve in my shoulder, or an irritated one. This is the first day I've been able to use my right arm in awhile, and even then I haven't been able to use it much. That means this won't be a long entry, as I'm right handed and having to type with only my left hand. The pain is especially bad when I move my fingers, or move my arm away from my body. The pain comes shooting down from the top of my shoulder where my bra strap would be, to the end of my fingertips. It's a sharp, burning, shooting pain, so that made me suspect that it may be a pinched or irritated nerve. DH, my knight in shining  armor, surprised me with another TENS unit. I'll put pictures of that up sometime soon. I saw my rheumy last week and the appointment went well. I will also fill you in on that as soon as I can. 

Tuesday, November 24, 2015

New Year's Resolution starting early this year

My cane
My cane
It may not be December yet, but I already know my New Year's Resolution. I want to be off my walker and only need a cane by December 31, 2016. This would be a big deal to me, not only making it easier to go places, but my self-esteem would really go up. I usually am fine with my looks (I like my face, but not by stomach), but using a walker in my mid-thirties is a huge blow to my self-esteem. I really hope that I can fulfill this resolution. I have fulfilled New Year's Resolutions before, so I'm pretty sure I can stick with this. I'll never be able to get rid of my EDS or bipolar, but I can make my EDS less painful. I believe that I can do this goal. I'm going to try to blog more, so I can keep you updated on my progress.

I took a nap earlier and can't seem to wake up all the way from it. I keep nodding off. When I napped on the couch Niki crawled on top of me and slept on me. It was the cutest, sweetest thing!

Katya and Mommy
Katya and Mommy
My pain levels have been bearable the last few days, which I'm very, very thankful for. I haven't had a dislocation in quite awhile; that's another thing I'm thankful for. I got an Icy Hot TENS unit. TENS stands for transcutaneous electrical nerve stimulation, it sends small electrical currents out that result in pain relief. It's used on the back, for back pain relief. You can get TENS units from the doctor, but this one DH got me at the grocery store. I'm not sure if prescription ones help more or not, but so far the Icy Hot one is doing well. The biggest draw backs so far are that I can't wear a bra and wear the TENS unit on my upper back, it's really hard to turn it on or change levels when it's in certain areas of my back because you have to push the buttons hard. The biggest issue I see, though, is that battery life is really short. The first day I used it was the day before yesterday afternoon, and by evening the next day it needed a new battery. DH bought a few of them from Dollar General. I haven't used my TENS unit today, because my upper back is where I need it the most and I want to wear a bra. I'm going to ask my rheumy next appointment if she can prescribe one. It said if you put it on your neck it can cause your throat to swell shut, and if you put it on your chest it can cause a fatal heart murmur. That doesn't sound like much fun, so I'll stick to my back.

Monday, November 9, 2015

Solemn Anniversary of Kristallnacht

Today was the solemn anniversary of Kristallnacht in 1938 Germany, also called the “Night of Broken Glass.” 30,000 Jewish men were arrested and sent to concentration camps, and those who weren't were terrified for their lives.  Around 100 Jewish people were murdered.  Kristallnacht marked the start of the violence against the Jewish people that would lead to the death of six million Jewish people during World War II.  Thousands of Jewish shops were destroyed that night, and it wasn't long afterward that Hitler unveiled the "Final Solution" to kill all Jewish people.

I wish many blessings to those affected by the Holocaust and their descendants, both living and dead, and the struggles the Jewish people still face everyday as a result of antisemitism.

Kristallnacht, 1938 Germany
Kristallnacht, 1938 Germany

Kristallnacht, 1938 Germany
Kristallnacht, 1938 Germany

Kristallnacht, 1938 Germany
Kristallnacht, 1938 Germany

Kristallnacht, 1938 Germany
Kristallnacht, 1938 Germany



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