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)

Thursday, January 1, 2015

Supplements, loss, and pushing through my pain limit

This year my new year's goal is to blog more often.  I have a set number of blogs in my head that I want to do; both for Survivor and Pagan Spoonie.  I received a full sample of a different brand of turmeric that I've been taking.  I am noticing a big difference in my pain levels, so I think it's not only working, but working well.  I'm out of my Vitamin D/Zinc/Magnesium/Calcium supplement, as well as my Vitamin C supplement.  I really hope we can afford them this month.  I've been out for a few months, and I notice a huge difference when I have them.  The doctor in St. Louis that diagnosed me with EDS said that I need to be on 1,000 to 3,000 mg of Vitamin C a day for collagen formation.  Vitamin D, Zinc, Magnesium, and Calcium are also supposed to help with collagen formation, the Magnesium helps my POTS a lot, too.

New Chapter Turmeric Force,
Picture via Amazon.com
It feels good to write again.  Last year was a pretty rough year, but we got through it in one piece, and I have a feeling that this year will be better than the last.  I didn't have anything to get DH on his birthday at the beginning of last December, but I still have it in mind and will be making it up as soon as I can.  I think he probably thinks that I've forgotten, but I haven't.  I know what I want to get him, and I keep imagining his face when he opens it.  I think it will be a happy one.

This New Year I can't help but think of all those I've lost in the past six or seven years.  I lost my Grandpa in 2008, my dog I grew up with passed a few of years ago at age 18, my Grandma passed a few years ago, Aunt Cecil passed in 2006, we lost Sterling in July of last year at age 16 1/2, Aunt Gloria passed a few years ago, and Uncle Bob passed a year ago in November.  Now my only family I care about, outside of DH and our kitties, are my parents and sister.  I'm not close to any of my other relatives, though when I was growing up I certainly was.  The thought of anything happening to my parents makes me want to throw up.  It seems impossible that my dad is almost 61, when did he get that old?  My mom is going to be 58 this year.  In my mind when I think of my dad he's in his late 30s or early 40s.  In my mind when I think of my mom she's in her mid to late 30s.  When I think of my sister I think of her when she was seven or eight, but she's actually 30.  I'm aware this makes no sense, since I'm 33 myself, and will be 34 this year, but that's just the way I think of my family.  The last time I saw her she was 23, my mom was 50, my dad was 53.  Okay, that's enough number talk.

I've baked something three times in December.  That may not sound like a lot, but I haven't baked much at all, as in once a year, for the past few years.  It hurt like hell, especially in my legs and back, but I was proud of myself to have finished it.  I've been pushing myself beyond my limits lately.  Sometimes that means the next two days I am in too much pain to get out of bed, but at least I got something done.  I find myself in tears in the evening from pain most nights, it's really hard to keep going sometimes.  I know so many of us spoonies feel that way, and I think we are all very brave, and very hard working to get through the day.  So, fellow spoonies, give yourself a pat on the back!

What are you proud of doing despite disability?

Wednesday, December 31, 2014

Year end review of 2014

January 2014

January was a pretty good month for us.  We were able to get some bills paid down, and all three kitties were healthy and happy.  I thought I'd found a new friend, only to find out she had a crush on me.  It hurt my feelings because I thought she wanted to be friends, not want to sleep with me-which would never happen in a million years.  I figured eventually she'd get over it, and continued to be a platonic friend.  We discovered all the spots in the house where the pipes were leaking, after our landlord (who is not a licensed plumber) redid all the water lines in our entire house.  He didn't do a good job, so now we have leaks in the house.

January 2014 - Katya playing in the wrapping paper and with a box

January 2014 - A light bit of snow that I found pretty
February 2014

February brought a lot of bad weather, as well as a sweet Valentine's Day gift.  I decorated the house for Valentine's Day, and Jim got me something sweet, along with a wonderful card.

February 2014 - a huge icicle that DH found outisde

February 2014 - me
March 2014

March brought a lot of rain, which is seriously hard on my joints.  I discovered the TV show "Bate's Motel," which tells the backstory to the Alfred Hitchcock film Psycho.  I immediately became hooked.  My bipolar caused me to become very depressed in March.  I found out that the supposed friend of mine didn't care about me at all, and did her best to try and break DH and me up.  The absurdity of it was hilarious, even if I was hurt.  Apparently she never got over the crush, even though I gave her absolutely no reason to think that I wanted to be anything but a platonic friend.
March 2014 - Sterling and his water bowl, he used to love lying there

March 2014 - me in my pink UMR hat
April  2014

I decorated the house for Easter.  We were going to color eggs, but I ended up in excruciating pain the days before and during Easter.  The "Easter bunny" left me some chocolate.  Okay, I admit, I left some chocolate out for both of us.  My anxiety was severe, but I was happy for the first time in months.

April 2014 - Yellow Easter lilies in the front yard

April 2014 - Yellow Easter lilies in the front yard
May 2014

We were drowning in debt, and I became very depressed again, with out of control anxiety.  I couldn't concentrate, much less actually write.  My pen pals, my writing, and my blogging to took a hit.

May 2014 - Katya checking out a box

May 2014 - Sterling cuddled up on my zebra blanket
June 2014

My birthday is in June, and it was the 2nd worst birthday I'd ever had.  I turned 33.  My worst birthday was when I turned 30, the age I was waiting to be for many years.  My third worst birthday was my 28th. The kitties and DH were the only reason I even came out of bed, and I didn't do that often.  I slept most of the day, and stayed up most of the night.  I couldn't seem to get my hours right.

June 2014 - DH and I

June 2014 - Sterling "the boy" lying down in his little pink kitty bed, before he got sick
July 2014

July 1st was one of the worst days of my life.  Sterling passed away, after being sick for a few weeks.  I didn't take any pictures of him while he was sick, because I didn't want to think of him that way later on, when he got better.  It didn't cross my mind that he'd ever pass away from it.  I was the last one to see him alive, and DH is the one who found him.  Sterling's favorite color was red, so DH and his friend wrapped him in my red dupatta for a burial shroud, and put him in his favorite place to be, his little pink kitty bed.  DH's friend and his friend's father buried him on his father's land, and his father, who is also minister, said kind words over him.  We rent, and for all we know they'll knock out house down someday and build a parking lot, or a gas station.  We wanted his somewhere permanent, where he wouldn't be disturbed.  I'm crying right now just thinking about the boy.  I would just stare at my computer screen, while it was off, for hours on end, while I silently (and sometimes loudly) cried.  My family will never feel complete again.  I am so happy we have our girls, Niki and Katya, because I don't know how I'd handle it without them.  I always talked to Sterling about being a big brother to our human baby someday.  I couldn't imagine that he wouldn't be there.

July 2014 - Me, trying to smile when my heart is breaking

July 2014 - Niki hanging out on my printer 
August 2014

On August 1st, a month from the day Sterling passed away, we almost lost Niki.  She had just been to the vet for an eye infection, and when we woke up on the 1st she was really hot to the touch.  We got a ride from Jim's friend (the same one who buried Sterling), and got Niki to the vet.  She was so ill she barely could move.  We were terrified.  We got her to the vet and while a cat's normal temperature is 100°-101°, her temperature was 105.5°.  The vet said we could have lost her that day.  The vet had even stayed behind when the office was closed to see Niki.  I hate, hate, hate to think of what would have happened if he didn't.  I was also very depressed in August, continuing staring off in space or my computer screen while it was off for hours.  I didn't cry as much, and tried to hide most of my crying from DH, because he was hurting bad enough already, without having to worry about me.  Niki got stinky liquid medicine in a dropper for 10 days, and 2 drops of eye drops in her infected eye; both twice a day.  Then, a couple of weeks later, in the middle of the month, her eye infection came back, and this time in both eyes.  Her fever seemed like it was there again, too, because she was really hot to the touch.  She had finished her medicines a week or two before, but then she had to start them all over again for 10 days.  She had to have drops in both eyes now, and another 10 days of that stinky liquid medicine in a dropper.  I would talk to Sterling out loud, because I knew he could hear me.

August 2014 - Me and my Eric Cartman (from South Park) doll DH got me

August 2014 - DH with Niki, she was very sick with an eye infection and a high fever
September 2014

DH and I attended a first birthday party of a little girl whose parents are friends of DH.  We had a really nice time.  The day was pretty, though a bit drizzly.  I had to use my wheelchair, and I was really embarrassed and nervous at first because of it, but everyone was very kind and soon the embarrassment went away.  In the beginning of September I went from depression to mania (not hypomania) overnight.  It is always very hard for me to deal with mania, and it really scares me.  My thoughts were going so fast I couldn't talk or write fast enough to keep up with all the changes of topic and flight of ideas I was having.  I started a few blog entries in September, but I had so very many ideas, and can only type around 70 words per minute (wpm), so I just couldn't write even a fraction of the thoughts flying so fast in my head.  This was followed by a depressive episode, and then at the end of the month a hypomanic episode.

September 2014 - Niki and me taking a nap

September 2014 - Our "cat in a hat" Niki



October 2014

I was very excited for Halloween, but I didn't get to put up any decorations this year.  I was depressed the whole month of October.  I really enjoyed Halloween, even though we didn't go anywhere or really do anything.  I missed our Sterling boy so, so much.  I usually dress up the kitties for Halloween, and I had plans to dress up Niki and Katya, but I couldn't bring myself to do it without Sterling.  The month of October did have some very good news to share, though, we started trying for a baby!  We went to University Hospital the month before and I saw a Maternal Fetal Medicine Specialist, aka a high risk pregnancy doctor.  I also saw a genetic counselor at the same appointment.  I was told that my Postural Orthostatic Tachycardia Syndrome (POTS) would get much worse when I'm pregnant, and my joints will be much looser, with a probably increase in pain from my Ehlers-Danlos Syndrome (EDS) and fibromyalgia.  There's no way to tell how my bipolar will do when I'm pregnant, some women's bipolar gets better when they have a bun in the oven, and some women get worse.  My Polycystic Ovarian Syndrome (PCOS) can cause infertility, so that's a possible concern.  I already knew that I had a 50% chance of passing my EDS down, and there's nothing I can do about that.  I can only pray that our future child gets Jim's genes when it comes to whatever genes my type of EDS comes from.

October 2014 - Niki and Katya looking out the window together (they destroyed the blinds)

October 2014 - My Halloween socks


November 2014

Things were very, very tight financially in November.  I started out the month entering a hypomanic episode, then hit depression, then hit hypomania again.  I was cycling moods so fast that I'm sure DH was confused, after all how do you know what mood my bipolar self will wake up in?  We had a nice Thanksgiving.  Thanksgiving isn't about money, it's about giving thanks for all the things we do have.  I have my DH, our Niki, and our Katya.  We have a roof over our head, and though my computer is almost 7 years old and doesn't work well, I still am lucky enough to have one.  DH's computer is almost 15 years old.  My mom got me a Kindle Fire (the first Fire, the 2011 model) a few years ago and I feel very lucky to have that.  I don't have a cell phone or the ability to walk much without a walker, but I still have a lot to be thankful for, like having my walker.

November 2014 - Katya sleeping on her face

November 2014 - Me wrapped in my black and gray zebra heated throw


December 2014

I had a wonderful Christmas.  My mom got both DH and I some really nice presents.  I got $50 from my mom and am going to use it to take Niki to the vet.  It won't completely cover the vet's bill, but it will help a whole lot.  I can't think of a better way to spend $50 than to get my kitty to the doctor.  My mom also got me three candles and a gift card for Amazon.  I felt so rich!  It isn't often I get to buy something on Amazon, so I was really excited.  I got DH a set of Craftsman tools that were on a Christmas sale of 50% off at Sears.  I ordered the tools online and chose a free in-store pickup.  Our car wasn't running, so a friend drove me to Sears and she went in with me to pick it up. I was so happy to see how excited he was when he opened it.  This has been overall a hard year, especially with losing our Sterling boy and almost losing our Niki girl.  I did have a wonderful Christmas, so I hope that good feeling and happy times continues into 2015, and this is a better year for all of us.

December 2014 - Katya watching our little Christmas tree

December 2014 - Me on Christmas Day

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
2008

DH holding up Sterling
Rest in Peace
2008

Sterling and DH
Rest in Peace
2009

Sterling
Rest in Peace
2010

Sterling
Rest in Peace
2013

Sterling
Rest in Peace
2012

Sterling
Rest in Peace
2012

Sterling
Rest in Peace
2012

Katya when shewas a kitten, biting my foot
2011

Katya licking her nose
2012

Katya
2014

Katya
2012

Katya
2011

Katya
2013

Katya
2012

Katya
2012

Me and Niki
2011

Niki
2012

Niki
2013

Niki 2010

Niki 2009

Niki
2009

Niki in a box fort
2011

Niki
2013