My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling With Psychotic Features ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ High Cholesterol

Monday, April 30, 2012

"Oh, but you DO look sick!"

I'm so worried about DH (darling husband).  He is in so much pain right now, and I know how that feels.  I feel so helpless when I see him in pain.  I want to take away his pain so bad, I want to make him "all better."  I'd rather take on the extra pain than him have it.  I love him so much,.  His face is all swollen on one side with infection and I'm worried about it getting into his blood stream.  He is my life, my soul-mate, The One.

My Soul-Mate

Today I'm going to type up some of the lessons I've learned in Toni Bernhard's book How to be Sick.  I will share a sneak peak tomorrow, but don't want to give too much away, because every spoonie should have this book.

How to Be Sick by Toni Bernhard

For the past week I was in a flare almost every day.  I know that us spoonies are often told we look so good, we couldn't possibly be sick, but there are some days you don't even have to talk to me to tell I'm sick.  See the proof in photos below:

In a severely painful flare - "Oh, but you do look sick!"

On a "but you don't look sick!" day

I was surprised once, when DH told me that he can still tell by looking at me how severe the pain is when I'm trying to hide it.  I thought I was an excellent "I'm a normal person" actor.  I think only he could tell or a another person who suffers severe pain, like my best friend V, can tell.  I think it's hard for people to remember I"m still in excruciating pain, even if I am talking and laughing.  The other option would be to sit and scream all day, so I choose to try my best to be "normal," whatever that is.

There are still thinks I can't do very well, like stairs, standing for long periods of time, cooking, using a walker, or showering without a chair, but when it becomes your new normal and you accept it as that, you don't really think about it very much.  I consider myself a lot more "normal" now that I accept that these things in my life as the present.  They are not the past, nor the future, but the present, the very moment we are experiencing now.  For me, waking up and taking 15 pills are normal.  So are my wrist braces and my Oval-8 finger braces.  Other things that are normal include being a: Tweetaholic, caffeine lover,cross-stitcher, scrapbooker, bibliophile, kittmmommy, introspect ive, sensitive.  Accepting your disability and its effects as a new normal is an important step to acceptance.

Behind the Blogger Challenge Day 24

•Day 24- A letter to your parents

Wow.  That one is a big deal and more than I want to get into right now.  So I'm going to change that to "A positive memory about your parents."

I remember when I was seven years old, in 1988, my second grade class was going on a field trip to Bonne Terre Mine.   My mom was a chaperon and I could hardly wait to see the mine.  It seemed like we were on the bus forever, before we finally pulled up at Bonne Terre Mine.  I was so, so excited.  First we went into the small museum they had above ground.  We were also told the rules we would need to follow before we went underground.

When we went down into the mine, they pointed out stalactites and stalagmites to us.  They also told the story of things that had happened in the mine.  The two stories I remember, were about a couple getting married in the mine, and two or three divers getting lost in the deep water in the mine, their bodies never found.  I really thought that was cool, and figured that I could probably spot the divers' bodies if I leaned over the railing.  My mom freaked out, and pulled me back.  As an adult she told me it absolutely terrified her when I leaned over the railing, and that mines and caves in general scare her.

When we came out of the long mine tour we went above ground to the gift store.  I bought a pair of super huge green 80s gag sunglasses and something else that I can't remember.  After we left the gift shop we posed by sticking out heads in the hole of wooden cut out animals and getting our pictures taken.  The drive home seemed to take forever, made worse by how worn out I was.  It was a great day, and a memory that I'll always treasure.

Bonne Terre Mine

Bonne Terre Mine

Bonne Terre Mine

Bonne Terre Mine

Sunday, April 29, 2012

Behind the Blogger Challenge Day 23

•Day 23- Something you crave for a lot

  • Chocolate!

Yum.  Just Yum.

  • Chocolate Ice Cream!

Ice cream is good for you.  You did know that, didn't you?

  • Strawberries!

I just hate it when the seeds get stuck in my teeth 

  • Pineapples!

I don't know if I could survive on them if I got shipwrecked on a desert island, but I definitely love them

  • Pepsi Max! (it's diet but with more caffeine than an energy drink...I can't imagine a heaven any better...)

At any given time there is a Pepsi Max 24 can package in my fridge

  • Hot tea!

Tea really is a cure-all!

  • Scrambled Eggs!  (preferably Egg Beaters)

I'll never understand how some people just can't seem to make something as easy as scrambled eggs

  • Ferrero Rocher!

To die for!
  • Diet Wild Cherry Pepsi

This is my go-to when I want to mix things up
  •  Lemonade!
I am not sure summer would exist without lemonade
  • Tofu! (sadly, I haven't had any in a long time)
I miss me some tofu so bad!
  • Wal-Mart Deli's Chicken Wing Chunks
Fattening foods never tasted so good (unless it's chocolate)
  • Peanut Butter and Jelly

PB & J. Classic.
  • High Fiber Cereals

Even as a kid, bran cereals were my favorite
  • Banana Popsicles

In addition to lemonade, summer needs Banana popsicles

Sterling asked me to put down a few things that he craves, too.  
  • Sterling craves...Kit 'n Kaboodle!
I sing him the Kit & Kaboodle song I made up while he eats

  • Sterling craves...treats!
Whiskas Temptations get a "one paw up" from Sterling

Saturday, April 28, 2012

Behind the Blogger Challenge Day 22

•Day 22- What makes you different from everyone else

There are a lot of things that make me different than other people.  Because I'm famous for list-making, I'm going to make a list.

1.  I am a bendy!  This means I can bend in positions that other people can't.  If I worked at it (and if I didn't have severe pain) I could be a contortionist.

2.  I found my true soul mate.  Most people attempt this, few actually find theirs.

3.  I have dimples, like my mom, and a cleft in my chin, like my dad.

my dad

4.  I collect postcards.

One of my favorite post cards from my collection

5.  I also collect books.  Not rare books, just books.  :-)

A beehive book case I found online

6.  deleted

7.  I have three people I can always count on, no matter what.  They are the hubby, Nessa, and Om.

8.  I have never seen the ocean.

9.  I have a fat cat who eats very little( our Niki), and a piggy cat who, under his massive amount of fur, is skinny (our Sterling).



10. One of my best friends is my cat, Niki.

Niki sleeping

11.  I am part of a minority religion.


12.  I'm gay but fell in love with the soul that is embodied in a straight man.  It pisses me off when people try to tell me my sexual orientation!!!!!!  I am a lesbian, not bisexual.


13.  I also have another rare disease called POTS, or Postural Orthostatic Tachycardia Syndrome, a type of Dysautonomia.

14.  I don't drive right now, but I do have a license.

Zoom!  Zoom!  HONK!  Zoom!  Zoom!  What fun!

15.  I have awesome pen pals from around the world.

Friday, April 27, 2012

Behind the Blogger Challenge Day 21

•Day 21- A picture of something that makes you happy

© Anne Geddes

© Anne Geddes

© Anne Geddes

© Anne Geddes

© Anne Geddes

Thursday, April 26, 2012

Behind the Blogger Challenge Day 19 & 20

•Day 19- Nicknames you have; why do you have them

Mamey - My sister called me this
Detective AMB - I called myself this when I played when I was about 7
Ams - My best friend calls me this sometimes
Kittymommy - What I call myself

•Day 20- What does your future hold/where would you like to be?

I would like to live outside of a small town, where I can have a small bit of land, and a three bedroom house.  I'd like to have a three bedroom because I want one for DH (darling husband) and me, one for our child, and one for an office.  I want to have enough room for DH to set up his coffee bar, because he really misses it.  He used to make espressos, cappuccino, lattes, and macchiatos.  They were really, really yummy!  I miss them and he does, too.  Before he met me, when he was with his ex, he had an awesome coffee bar but hasn't got to replace it since their breakup.

I would like some land so if I want to walk outside and do whatever, no one is around to see me.  I'm not afraid of the woods, I'm afraid of the human beings in  towns and cities.  People kill people a lot more than animals kill people.

I would like some trees on our land, as many different kinds as possible.  When I was growing up, we lived on 1/2 an acre of land with a tulip tree, white oaks, a red oak a sycamore, pines, cedars, junipers, wild grapes, and wild blackberries.  That was before we planted 10 new trees in honor of Earth Day when I was a kid.  I really miss having the view from the front porch of the field, hills, and trees across the gravel road.  I am still in complete shock that some people have never seen a cow!  I can understand city people never seeing a wolf, coyote, or mountain lion.  But I thought everyone has seen a cow, raccoon, chicken, and squirrel before!

I want to be a freelance writer and a novelist.  For those not familiar with the writing community, those are two different things.  A freelance writer writes for who she pleases to and sometimes gets to negotiate payment, while other times she doesn't.  A novelist--you guessed it--writes novels.  I also want to eventually write my memoir, concentrating on the first 27 years of my life, when I was stuck within an abusive, extremely controlling family.

I also want to hold my handfasting with DH.  DH and I are not legally married.  We plan to celebrate our commitment to each other for life with a handfasting.  A handfasting was the precursor to weddings, in the Celtic countries.  I also want to have one child with DH.  I know that we have a lot of love to give and I think and hope we will make good parents.

Tuesday, April 24, 2012

Behind the Blogger Challenge Day 18

DH and I will have a handfasting someday 
•Day 18- Plans/dreams/goals you have

My goals are, in no particular order:

  • to get my legs stronger so I can use my walker less
  • to move somewhere far from here
  • to write a novel
  • to write a memoir
  • to have a relationship with my sister again
  • to meet my best friend in Long Island
  • to be able to bake again
  • to read War and Peace
  • to own a home with a little bit of land
  • to have a baby, or if we can't naturally, then to adopt
  • to have a handfasting with my DH (we are not actually married)
  • to keep up with writing my pen pals on time
  • to homeschool our future child
  • to protect our future child from bad people
  • to see a cure for fibromyalgia in my lifetime
  • to get a new set of dishes, pots, pans, and silverware--all of which were destroyed by the people who lived here for so long
  • to get DH (darling husband) set up with a coffee bar again like he loves, he misses his old one
  • to collect all the DVDs of "The L Word"
  • to watch all of the "Charmed"," "Buffy the Vampire Slayer," and "Angel" episodes
  • to get a picture of the five of us: DH, Sterling, Niki, Katya, and me
  • to make a kitty playground, with scratching posts, boxes, climbing toys, and cubby holes
  • to grow an herb garden that I can take inside in the winter that the cats can't get into.  I'm still trying to figure that one out!
  • to kiss my DH while sitting on Hadrian's Wall
  • to visit Australia
  • to see the UK and Ireland
  • to find out what tribe of Native American my great-grandpa was.  I'm a little over 1/8 of some tribe, I just don't know which one, no one in the family does.  On my mom's side I have a little Cherokee, my dad's side is the unknown one.
  • to learn to crochet better
  • to learn to knit
  • to remember to take my vitamins

Me, going baby nuts. I'm 30 now, and my biological clock is screaming.

Monday, April 23, 2012

Behind the Blogger Challenge Day 17

•Day 17- Someone you would want to switch lives with for one day and why

I don't think there is anyone I want to switch lives with for a day.  I have a lot of problems in my life, mainly health problems and poverty, but I couldn't imagine even a day without my DH (darling husband) and my kitties.  I will however, make a short list of people who lead cool lives.

#1.  Hillary Clinton.  She's one of my heroes, who fights tirelessly for women's rights.

Hillary Clinton

#2, #3, and #4.  Our cats.  They get to sleep all the time and can get comfortable in any position, anywhere.





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