My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Saturday, November 26, 2011

"Pain Rehab"

"Pain Rehab" 

sung to the tune (and based on) the song "Rehab," written and performed by Amy Winehouse

lyrics by Amy

(this song refers to pain therapy and rehabilitation not drug rehab!)

They tried to make me go to pain rehab, I said, "No, no, no."


Yes, I've been in chronic pain, but when I bounce back you'll know, know, know."
I ain't got the time and if my doctor thinks I'm fine,
He's tried to make me go to pain rehab, I won't go, go, go.

I'd rather be at home with my Biofreeze,
I ain't got seventeen heat packs.
'Cause there's nothing, there's nothing you can teach me,
That I can't learn from my spoonie friends.

I got a lot of chronic pain,
It's so much worse when it rains.

They tried to make me go to pain rehab, I said, "No, no, no."
Yes, I've been in chronic pain, but when I bounce back you'll know, know, know."
I ain't got the time and if my doctor thinks I'm fine,
He's tried to make me go to pain rehab, I won't go, go, go.

The doctor said, "Why do you think you're here?"
I said, "I'm in so much pain."
I'm gonna, I'm gonna lose my mind!
So I always keep a ice pack handy.

The doctor said, "I just think you're depressed,
It's probably all in your head."

They tried to make me go to pain rehab, I said, "No, no, no."
Yes, I've been in chronic pain, but when I bounce back you'll know, know, know."

I don't ever wanna hurt again,
I just, ooh, I just need some Aspercreme.
I'm gonna keep a positive attitude,
Let's encourage each other!
And it's not just my pain,
It's also this darn fatigue.

They tried to make me go to pain rehab, I said, "No, no, no."
Yes, I've been in chronic pain, but when I bounce back you'll know, know, know."
I ain't got the time and if my doctor thinks I'm fine,
He's tried to make me go to pain rehab, I won't go, go, go.



Highly Rated Pain Rehab Clinics in the United States:

Friday, November 18, 2011

Bipolar...kicking my ass

I'm not doing good.  Not at all.  I'll get through it, but that's because you have two choices in life, you either get through it or you die.  I had a mania episode last week (was it last week?).  Then I, not surprisingly, hit depression.  Bipolar depression tends to be more severe than unipolar depression (also called major depression).  When I was manic I was having fun.  My pain levels were lower, my mood was elevated...it was just all around great.  I even considered cutting my meds in half to keep the high going, which I haven't admitted until now.  I did semi-accidentally forget my medicine twice for that reason, even though I knew that it increased my risk of developing psychotic symptoms of mania or hitting bottom with depression.  I had no money and I am too physically ill to leave the house so there wasn't much I didn't feel there was much I could do self-destruction wise.  I felt safe.

Then, like clock-work, depression hit.  I bottomed out, and combined with my other mental illnesses (Complex-PTSD, SAD, anxiety, panic attacks, etc...) it is just too much.  I thought I was hiding the mania really well, until I talked to DH about it one night and he said that it was very obvious and of course he knew.  So...I thought I was hiding my depression even better.  I told DH yesterday that I've been hiding it pretty good so he probably doesn't realize, but I'm really depressed.  He ended up surprising me by telling me that he's known for awhile and that it is, again, very obvious.  I'm not the actress I think I am, apparently.




I started a blog entry for Invisible Illness Awareness Week about bipolar, and though it is no longer Invisible Illness Awareness Week, I want to finish the blog and post it later...or next year on Invisible Illness Awareness Week  I already, during the awareness week, wrote two blogs about bipolar, which can be accessed here and here.  I've been calling out for help the only way I know how...a bit on Facebook, and a lot on Twitter and now Daily Strength.  It's just too much right now.  Everything is too much.  Right now even eating is too stressful to do.  Plus I feel sick from anxiety and depression and have no desire to feel sicker with a full tummy.  I tend to either eat a lot or nothing when I am cycling, whether it is mania or depression.

I started using my lightbox this morning.  I started out using it last year-or was it the year before?  I didn't keep it up though, so it didn't help much.  I think it is a cruel joke that Seasonal Affective Disorder is called SAD.  Basically SAD, according to Pub Med Health is:

Seasonal affective disorder (SAD) is episodes of depression that occur at a certain time of the year, usually during winter.
Causes, incidence, and risk factors
The disorder may begin during the teen years or in early adulthood. Like other forms of depression, it occurs more often in women than in men.
People who live in places with long winter nights are at greater risk for SAD. A less common form of the disorder involves depression during the summer months.
Other factors that may make SAD more likely include:
  • Amount of light
  • Body temperature
  • Genes
  • Hormones
Symptoms
Symptoms usually build up slowly in the late autumn and winter months. Symptoms are usually the same as with depression:
  • Increased appetite with weight gain (weight loss is more common with other forms of depression)
  • Increased sleep and daytime sleepiness (too little sleep is more common with other forms of depression)
  • Less energy and ability to concentrate in the afternoon
  • Loss of interest in work or other activities
  • Slow, sluggish, lethargic movement
  • Social withdrawal
  • Unhappiness and irritability
Mental illness has been stigmatized as long as we have records of people being mentally ill.  This includes people with epilepsy, even though epilepsy is not a mental illness, for years people with epilepsy were considered insane.  In most places in the United States people with mental illness are still treated as less than human by the mental health profession, as well as doctors who take care of the physical body.  If I am seeing a doctor for a physical problem and they either hear "bipolar" in my medical history or hear the name of some of my bipolar meds when he is taking down my current meds list, they automatically start treating me different.  They treat me like I'm stupid, a liar, and just crazy.  I have more education, or as much as, most mental health professionals, i.e. case workers, and not to brag, but I'm a hell of a lot smarter than most of them.  My IQ could run circles around most of them.  I'm not saying I know more about psychiatry, I'm just saying it pisses me off being treated like I'm stupid-even more so, because often the people who do it are "stupider" than me, if they want to use a word such as that.

Me at my lightbox - the standard treatment for 
Seasonal Affective  Disorder (SAD)
The conditions in psychiatric hospitals, where I've been both a patient and a volunteer, are horrible.  Many people that come out of a psychiatric hospital develop PTSD from the hospitalization.  People who are not mentally ill would be amazed at what abuses go on in "the system."  If I hadn't been trapped in the system for so many years, I wouldn't believe what goes on, either.

It makes it harder that I can't really talk to anyone who that doesn't have mental illness.  It's one of those things that if you haven't experienced it, you can't possibly understand.  I've experienced it as both a mentally ill person, called a "consumer," and the family member of someone mentally ill.  I am the child of many mentally ill family members.

Thursday, November 10, 2011

Journaling week 2

Friday 28 October 2011

Food:
scrambled eggbeaters
Chips (tortilla rolls, spicy and yucky)
Waffles
Sugar-free pancake syrup
chocolate M&Ms
BBQ baked boneless skinless chicken breast
pasta and cheese
corn
3 bites of a caramel apple


Pain:wake: 10:30
couldn't sleep last night from pain
wake 8/10
neck, legs, head pain
WHOLE BODY stiff
lots of pain
FLARE DAY #2
Subluxed right hip again today



Saturday 29 October 2011
Food:peaches fruit cup
2 bowls bran flakes
skim milk
scrambled eggbeaters
bacon
popsicle


Pain:never went to sleep because of pain
Subluxed right hip and then left hip in night
HIPS, SHOULDERS pain
back pain
shaky
hand weak
FLARE DAY #3
PAIN
solid 9/10 all day



Sunday 30 October 2011

Food:
bran flakes
skim milk
popsicles
pizza - 3 slices


Pain:
wake: 8 am
FLARE DAY #4
waking pain 8/10
very stiff, feel bruised inside, hurt!!!
hips hurt so bad, especially right hip
throat feels like a huge lump in it, burns
2:00 pm
severe neck pain
9/10
8:38 pm
severe head & neck pain
neighbor's music is incredibly loud



Monday 31 October 2011

Food:
scrambled eggbeaters
2 pieces toast with margarine
Popsicles
3 pieces pizza


Pain:
wake: 9:00 am
lump in throat still and painful
flare broke late last night
12:00 midnight
jaw hurts for an hour now



Tuesday 01 November 2011

Food:
Chicken sandwhich (breaded) ketchup only (didn't finish)
medium french fries
strawberry shake
4 little Halloween Snickers
fat-free greek yogurt with fruit
strawberry shredded wheat
skim milk


Pain:
wake: 11:15 am
stiff
pain 6/10
shaky
7:28 pm
low pain day
still a 6/10!
neighbors playing music LOUD so headache is getting worse and anxiety is going up
8:16 pm
Fell like I'm going to throw up
Loud music is making me really anxious
bad heartburn
lump in throat all day



Wednesday 02 November 2011

Food:
cereal
skim milk
popsicle
Lean Cuisine chicken club
Chinese buffet


Pain:
wake: 10:15 am
very stiff
every joint hurts
right hip very painful
going to rian
overall 7/10
lump in throat very sore
3:00 pm
pain 7/10
achy EVERYWHERE
VERY stiff



Thursday 01 November 2011

Food:
Fat free Greek yogurt with fruit
10 piece chicken McNugget
large fries
strawberry shake
popsicle
banana/strawberry/fat-free whipped topping/ banana cream pie pudding


Pain:
wake:
pain 7/10, closing in on an 8
NO MEDS LAST NIGHT
afternoon:
sat down & scary popping noise in neck
3:34 pm
neck 8/10
overall 7/10
all joints hurt so bad
hurts so bad to walk
bad headache
jaw ache
headache: temples, between eyes, above neck, jaw, face
5:52 pm
NECK PAIN

Sunday, November 6, 2011

When a writer gets brain fog...


I haven't checked my email in a week and haven't logged into facebook all day, because I was asleep.  If I don't get my hair cut soon...I feel like screaming!  I am so sick of it being so long.  I want to cut it off even with the bottom of the bra.  Right now it has tons of dead ends and reaches my butt.  It is driving me insane.  

The writing I've done in my new class has been too easy so far.  This tells me that I'm not doing it right, because it should take more time than it takes me.  I just can't seem to make it any better.  Usually my mind is full of ideas when I write, but lately my brain goes blah, when I try to write.  DH cleaned out the garage the other day, I'll write about that later, because he found something horrible and I don't feel like crying right now.  If I write about it, I will definitely cry.

I actually don't have any doctor's appointments this month at University Hospital.  I'm happy about that.  I slept all day so I'm wide awake now.  I'm going to try to get some sleep tonight still, because otherwise I'll be up all night and sleep all day again tomorrow.  I can't stay up when I get sleepy because I fall asleep sitting up.  It hurts my neck when I do that, too.  Right now the kitties are napping and DH is sleeping.

I'm pretty nervous at how easy my class has been so far.  I think about it a lot.


I haven't had any dislocations in awhile, just subluxing joints.  We've been watching "King of the Hill" every night on Netflix together.  Before that we watched all the "Family Guy" episodes, before that it was "Reno 911."  I really enjoy spending time with DH every evening, cuddled on the couch watching Netflix.  

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