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) ~ Complex--Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder ~ Non-suicidal Self-Injury (SI) ~ Social Anxiety Disorder (SAD) ~ Hashimoto's Disease (Autoimmune Hypothyroid) ~ Seasonal Affective Disorder (SAD)

Wednesday, November 26, 2014

Poverty, pain, anxiety, and depression

Poverty & income inequality are huge problems in the USA
I haven't written much in awhile.  I've been depressed, with horrible anxiety, and a great increase in pain, especially burning muscles and feet, as well as allodynia pain.  For those who don't know, allodynia pain is when you feel pain from what should be a non-painful stimulus.  In my case my clothes, bed sheets, pillowcases, the couch, pretty much anything that touches my skin is excruciating, even my own hands in my lap.  This is how I describe my allodynia pain: it feels like someone has sandpapered my skin so hard it's bleeding, then pressed rough grit sandpaper into the bloody mess and left it there.  To add to that lovely mess, my abdomen has been hurting a lot from IBS, and both my pajama pants are so worn through they are covered in holes.  So I have to wear jeans or sweatpants, which are rougher against my skin and tighter across my painful belly.  I have three bras, all really stretched out and four years old, with two of them being very scratchy.  Somehow I'm supposed to find the money to buy new pajama pants, soft underwear, soft bras, and soft shirts.  I'm not sure how the hell I'll be able to afford that, especially at this time of year, and especially since my car is broken down yet again.  I still have to renew my car insurance and renew my license plates next month, as well as make a big payment to AARP, my Medicare Rx provider.  We really need to get a new (used) car, my car will be 21 years old in January, and it's falling apart much faster than we can fix it.  Repairs on it would cost at least four to six times the car's value.  DH needs new shoes and new jeans, he only has one pair, and they are tight in the waist.  Niki needs to go to the vet because she won't stop sneezing, and I haven't even begun to figure out what I want to get DH for Christmas or how the hell I'll be able to afford it.  We had to borrow money today to have food.  We have a tiny ham for tomorrow, Thanksgiving, as well as pumpkin pie mix, a pre-made crust, and I think we may even have some box stuffing, but I'm not sure on that.  I'm at my wit's end and have no idea how to pay for this all.

Vivid nightmares are common in people with bipolar & PTSD
I worked, and payed into the system before I got my disability.  Yet I get so little money each month in disability we can just barely afford enough to eat, and sometimes that means only one meal a day if we want to make our food stretch.  I feel really guilty if I eat very much, because I know that means later I may not have anything to eat.  Living in poverty is a very stressful life.

My depression from my Seasonal Affective Disorder (SAD) sets in every year in November, with my first really bad days happening about two weeks before Thanksgiving every year.  I love Thanksgiving, but it is really hard for me to enjoy it when I'm so depressed.  With depression comes anxiety, which increases my pain levels even more.

Today I've been going back and forth between bed and the couch, trying to get comfortable but failing.  Last night I had the most vivid horrific, violent, sadistic dreams nightmares I've ever had in my life, and I've been having vivid terrifying and violent nightmares since I was seven.  I'm absolutely terrified to sleep tonight, and I don't know what to do.

I don't know what to do about the nightmares and the lack of money.  I'm at a loss.

Sunday, November 23, 2014

Spelling lesson

Bipolar is not spelled "bi-polar."  Bipolar is not spelled "bi polar."  It isn't spelled "BiPolar."  It's spelled BIPOLAR.  I sure wish people online could understand this concept.

Thursday, November 6, 2014

"Unknown Girl In a Maternity Ward" by Anne Sexton

Anne Sexton (November 9, 1928 - October 4, 1974)

"Unknown Girl In a Maternity Ward"

Child, the current of your breath is six days long.
You lie, a small knuckle on my white bed;
lie, fisted like a snail, so small and strong
at my breast. Your lips are animals; you are fed
with love. At first hunger is not wrong.
The nurses nod their caps; you are shepherded
down starch halls with the other unnested throng
in wheeling baskets. You tip like a cup; your head
moving to my touch. You sense the way we belong.
But this is an institution bed.
You will not know me very long.

The doctors are enamel. They want to know
the facts. They guess about the man who left me,
some pendulum soul, going the way men go
and leave you full of child. But our case history
stays blank. All I did was let you grow.
Now we are here for all the ward to see.
They thought I was strange, although
I never spoke a word. I burst empty of you,
letting you see how the air is so.
The doctors chart the riddle they ask of me
and I turn my head away. I do not know.

Yours is the only face I recognize.
Bone at my bone, you drink my answers in.
Six times a day I prize
your need, the animals of your lips, your skin
growing warm and plump. I see your eyes
lifting their tents. They are blue stones, they begin
to outgrow their moss. You blink in surprise
and I wonder what you can see, my funny kin,
as you trouble my silence. I am a shelter of lies.
Should I learn to speak again, or hopeless in
such sanity will I touch some face I recognize?

Down the hall the baskets start back. My arms
fit you like a sleeve, they hold
catkins of your willows, the wild bee farms
of your nerves, each muscle and fold
of your first days. Your old man's face disarms
the nurses. But the doctors return to scold
me. I speak. It is you my silence harms.
I should have known; I should have told
them something to write down. My voice alarms
my throat. 'Name of father-none.' I hold
you and name you bastard in my arms.

And now that's that. There is nothing more
that I can say or lose.
Others have traded life before
and could not speak. I tighten to refuse
your owling eyes, my fragile visitor.
I touch your cheeks, like flowers. You bruise
against me. We unlearn. I am a shore
rocking off you. You break from me. I choose
your only way, my small inheritor
and hand you off, trembling the selves we lose.
Go child, who is my sin and nothing more.

Anne Sexton

Wednesday, October 29, 2014

National Cat Day!

Dusty aka Dusty Dog
Rest in Peace
about 1995

Dusty aka Dusty Dog
Rest in Peace
about 1995

My cat Blacker
Rest in Peace
about 1989

From L to R: My dad's cat Tigger (yellow), my cat Blacker (black), my sister's cat Ribbon (white)
Rest in Peace
about 1989

Me and my cat Blacker
Rest in Peace
about 1989

Sterling and DH
Rest in Peace

DH holding up Sterling
Rest in Peace

Sterling and DH
Rest in Peace

Rest in Peace

Rest in Peace

Rest in Peace

Rest in Peace

Rest in Peace

Katya when shewas a kitten, biting my foot

Katya licking her nose







Me and Niki



Niki 2010

Niki 2009


Niki in a box fort


Wednesday, October 8, 2014

"When Man Enters Woman" by Anne Sexton

Anne Sexton (November 9, 1928 - October 4, 1974)

"When Man Enters Woman"

When man,
enters woman,
like the surf biting the shore,
again and again,
and the woman opens her mouth with pleasure
and her teeth gleam
like the alphabet,
Logos appears milking a star,
and the man
inside of woman
ties a knot
so that they will
never again be separate
and the woman
climbs into a flower
and swallows its stem
and Logos appears
and unleashes their rivers.

This man,
this woman
with their double hunger,
have tried to reach through
the curtain of God
and briefly they have,
though God
in His perversity
unties the knot.

Anne Sexton

Tuesday, September 16, 2014

What is PCOS (Polycystic Ovarian Syndrome)?

PCOS, or Polycystic Ovarian Syndrome, is a common endocrine disorder that affects one in ten women.  It is often mistaken for a reproductive disorder, but it isn't.  In fact, while most women have polycystic ovaries, not all women with PCOS do.  Also, there are women with polycystic ovaries that do not have PCOS.  That's why there is a huge push to change the name of PCOS, because it is a misnomer.  While 5% to 10% of women have PCOS, they are often misdiagnosed, or told to go to a psychiatrist for their physical and depressive issues.  Women are often not taken as seriously as men in the field of medicine, in fact there are some doctors who still diagnose women with "hysteria," a bogus diagnosis that means the doctor doesn't care about his patients enough to diagnose them with their real problem.  Only women had "hysteria."  The diagnosis of hysteria was most commonly used in Victorian times, and was cured by an involuntary hysterectomy, or by a doctor massaging a woman's genitles until she has an orgasm, dubbed a "hysterical paroxysm."  Another way to cure hysteria was for the doctor to spray a high power cold water jet onto her genitalia, or he'd use a vibrator, aka "massager," on the woman to give her an orgasm.  These "cures" would be considered sexual assault today, in Western countries.  But, I digress.

Normal Ovary vs Polycystic Ovary - PCOS
Normal Ovary vs Polycystic Ovary

The diagnosis criteria are not agreed upon, and right now there are three different diagnostic classification systems: the NIH Criteria, the Rotterdam Criteria, and the Androgen Excess and PCOS Society Criteria.

The NIH Criteria, created in 1990, means a woman must have all of the following symptoms for a diagnosis of PCOS.
1) oligoovulation, meaning infrequent or irregular ovulation.
2) signs of the male hormone androgen in excess (clinical or biochemical)
3) exclusion of other disorders that can result in menstrual irregularity and hyperandrogenism (androgen excess)

The Rotterdam Criteria was established in 2003, and a woman needs to have at least two of the following three criteria:
1) oligoovulation and/or anovulation (infrequent or irregular ovulation and/or no ovulation)
2) excess androgen activity
3) polycystic ovaries (by gynecologic ultrasound)
4) Other entities are excluded that would cause these.

To meet the Androgen Excess PCOS Society, in 2006, came up with criteria in which a woman has to have every symptom to make the diagnosis of PCOS:
1) excess androgen activity
2) oligoovulation/anovulation and/or polycystic ovaries
3) exclusion of other entities that would cause excess androgen activity

Polycystic Ovary vs Normal Ovary - PCOS
Polycystic Ovary vs Normal Ovary

This doesn't mean that these are the only symptoms of PCOS.  PCOS is a complex syndrome with no clear cause.  Here is a list of some of the more common PCOS symptoms:

  • High blood pressure
  • Insulin resistance
  • High cholesterol
  • Type 2 diabetes
  • Heart disease
  • Endometrial cancer
  • Breast cancer
  • Ovarian cancer
  • Uterine cancer
  • Extensive coronary artery disease
  • Heart attack
  • Acne, often severe
  • Hirsutism (HER-suh-tiz-um) increased hair growth on the face, chest, stomach, back, thumbs, or toes
  • Weight gain
  • Problems with ovulation
  • Infertility because of lack of ovulation
  • Infrequent, absent, and/or irregular menstrual periods
  • Multiple, small cysts in the ovaries
  • Oily skin or dandruff
  • Weight gain or obesity, usually extra weight around the waist
  • Male-pattern baldness or thinning hair
  • Hyperadrogenism (an excess of male hormones)
  • Chronic unopposed estrogen secretion
  • Acanthosis nigricans (patches of skin on the neck, arms, breasts, or thighs that are thick and dark brown or black)
  • Skin tags (excess flaps of skin in the armpits or neck area
  • Pelvic pain
  • Anxiety
  • Depression
  • Sleep apnea
  • Preeclampsia during pregnancy (pregnancy induced high blood pressure)
  • Gestational diabetes
  • Decrease in breast size
  • Deeper voice
  • Repeat miscarriages
  • Enlargement of the clitoris

Normal Ovary vs Polycystic Ovary - PCOS
Normal Ovary vs Polycystic Ovary
As you can see, PCOS causes a myriad of symptoms.  Some women's lives are greatly affected by it, while for others it's just a nuisance.  While we wait for both for doctors to reach a conclusion about the cause of PCOS, we also wait for the cure.

Saturday, September 13, 2014

"The Witch's Life" by Anne Sexton

Anne Sexton (November 9, 1928 - October 4, 1974)

"The Witch's Life"

When I was a child
there was an old woman in our neighborhood whom we called The Witch.
All day she peered from her second story
from behind the wrinkled curtains
and sometimes she would open the window
and yell: Get out of my life!
She had hair like kelp
and a voice like a boulder.

I think of her sometimes now
and wonder if I am becoming her.
My shoes turn up like a jester's.
Clumps of my hair, as I write this,
curl up individually like toes.
I am shoveling the children out,
scoop after scoop.
Only my books anoint me,
and a few friends,
those who reach into my veins.
Maybe I am becoming a hermit,
opening the door for only
a few special animals?
Maybe my skull is too crowded
and it has no opening through which
to feed it soup?
Maybe I have plugged up my sockets
to keep the gods in?
Maybe, although my heart
is a kitten of butter,
I am blowing it up like a zeppelin.
Yes. It is the witch's life,
climbing the primordial climb,
a dream within a dream,
then sitting here
holding a basket of fire.

Anne Sexton

Tuesday, August 26, 2014

National Dog Day!

I miss you all so much! 

Our family dog Lucky in the snow
Rest In Peace
about 1989
Our family dog Lucky posing with my sister
Rest In Peace
about 1989
My sister dressed up our family dog Lucky
Rest In Peace
about 1988
My sister's dog Nippy and my dog Togy getting married
May You Both Rest In Peace
about 1994

My sister's dog Nippy and my dog Togy playing
May You Both Rest In Peace
about 2001

My sister's dog Nippy and my dog Togy playing
May You Both Rest In Peace
about 2001
Togy lying in the shade on the cool grass on a hot summer day
Rest In Peace
about 2001

Togy when he was  puppy and playing with his first toy
Rest In Peace
about 1997

My dog Togy with a dazzling smile
Rest In Peace
about 2004

My sister's dog Nippy
Rest In Peace
about 2003

My sister's thirsty dog Nippy
Rest In Peace
about 2001

My sister's dog Nippy eating food from my dad's hand
Rest In Peace
Our Border Collie Ophelia curled up on her fleece Harry Potter blanket
Rest In Peace

Getting hugs and kisses from the Daddy
Rest In Peace

Our Border Collie Ophelia getting lovin's from Mommy
Rest In Peace

Our Border Collie Ophelia and her toy pink bear
Rest In Peace

My mom's dog Lady in a coat and puppy mittens for going out into the snow

My mom's dog Lady with her special Disney Princess blanket

My mom's dog Lady wearing her green dress

My mom's dog Lady with her special Disney Princess blanket

My mom's dog Lady in one of her many beds

My mom's dog Lady helping decorate the Christmas tree