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 Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ 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 (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Saturday, December 31, 2011

Goodbye and so long 2011!

This year was a long, horrible year.  At times it seemed like the misery would never end, though a few good things did happen this year.  I've decided to do my year end blog entry a little different than usual, just to mix things up. I want to concentrate less on the quality of 2011 and more on the awesomeness that 2012 holds.

January
It's cold outside- so dress up for a luau!


February
My sweetie got me a big frosted chocolate chip cookie for Valentine's Day

March
The conception of my garden

April
My flowers coming along nicely :-)

May
My Topsy Turvy tomatoes


June
I never did remember what I planted in the maroon pot

July
My Morning Glories

August
Niki worn out from playing with string

September
Our country's beautiful flag flying on a blue-skied September day

October
Katya, when she was a tiny little kitten

November
Our Thanksgiving ham--yum, yum!

December
Christmas gift from my lovely friend

2012 is going to be a great year!


Happy New Year!

Friday, December 30, 2011

Cough, cough

I have done a ton of cleaning over the past few days.  I'm keeping my fingers crossed I don't flare.  Over the past four weeks, I've had one flare a week, sometimes lasting two days, and sometimes lasting one day.  They have been short in length but they happen often.

I've got a horrible cough now, I have been coughing since I woke up this morning.  Yesterday I coughed some, and the day before that a little.  I hope I'm not getting a cold or something, because they often send me into a flare.  My nose isn't runny, thankfully, it's just a really sore throat and a dry cough, but I do occasionally cough up yellow gunk.  Eww!  I've been reading online what to do for a cough and two pages suggested drinking chamomile tea, so I'm going to do that in a minute.  I think it is mainly to soothe the throat, which sounds just fine.


DH's surgeon's appointment is upcoming, but on the same day as my doctor appointment.  We have to reschedule one or the other, I want to reschedule mine.  DH's first appointment with his surgeon is my priority.  He has a horrible inguinal hernia that needs surgery very soon.  I'm very, very worried about him.  It's bad enough that if he doesn't hold his guts in while he coughs his skin balloons up and starts gurgling where the bowel is.  He does it a lot when he coughs in his sleep and it really scares me.  It took a couple weeks of that before I convinced him to see a doctor.  Now I have to convince him that his doctor appointment is much more important than mine right now.

I've decided to start eating healthy again this year.  When I was single I ate very healthy, and was at my perfect weight.  Now I can no longer jog, I've gained weight, and I eat too much junk food.  That has to change!  My first goal is to lose three pounds in the month of January.  Weight comes off much slower when you can't really do cardio workouts.  I don't believe in fad diets, because they are so bad for your health.  I've lost 100 pounds before and I know what I have to eat to make the weight come off.  For me, high fiber and low fat is the trick.  I've decided to make monthly weight loss goals, like my three pound goal.  We even got batteries for the scale, so I can weigh myself once a week and keep track of it.


My dry cough is turning into a productive cough. Now I'm coughing up icky yellow stuff every time.  Like I said before...ewww!  Well, I do believe my DH is home, so I am going to spend some time with him.

Take care!

Tuesday, December 27, 2011

A new normal or a just big chicken?

For those of you who have been reading my blog for awhile, you already know about my neck pain and headaches, which started a little over two years ago.  Somedays I'm in bed all day with ice packs on my neck, but the last couple of weeks I haven't had to.  I was given an appointment with a neurosurgeon by my rheumy, but I don't want to see a surgeon until I have seen another doctor.  I am afraid his answer would be surgery.  I have absolutely no interest in going under the knife.  (Just so I'm clear, I'm not saying that people who have surgery want to, unless it is elective, such as a breast augmentation.)  Besides, I just don't think the place to start is a neurosurgeon, or surgeon of any kind.

I was going to make an appointment with another specialist, whose specialty I can't remember at the moment (is it called an orthopedist maybe?).  Instead I decided not to call.  I think perhaps my neck pain may be fibro pain and that there isn't anything the doctor could do.  It is really hard on me to ride in the car all the way to University Hospital, so I try and trim my doctor appointments down to only the ones I really, really need.  Read more about fibro and neck pain here.

Of course there is always the chance with EDS it is something more serious.  I hope not, though, and I have a lucky feeling.  Read more about EDS and neck pain here.

So, my idea is that my neck pain is a "new normal" for me and I'd better just get used to it.  I think I already am becoming used to it because I don't have to think about not turning my head anymore, I just don't do it on instinct.  It's been a long time since I've been able to to turn my head all the way, and I do miss it.  My neck pops, clunks, and grinds, but I think that happens with fibro, too.  I'm not one hundred percent sure on that one, though.  My collarbone popped three times in the last three days when I was coughing.  It is very disconcerting!  I think that this is also, normal, though, for anyone, not just for spoonies.

If it is fibro, there is no reason to go to see another specialist.  I do need to see my cardiologist again, now that I know I have POTS (Postural Othrostatic Tachycardia Syndrome).  I have a lot of POTS symptoms still, but rarely actually faint.  The other symptoms are bad enough for me to definitely need treatment.  They really interfere with my life.  I think I definitely need to talk to my cardiologist.  I need to go see the people that make foot orthodics, too.  I have to have some made, and I already have the script for it.  I think Medicare will pay for it.  I hope it gets rid of some of my foot pain and helps align my ankles, knees, and hips, thus taking weight off it it.

I had a nice Christmas.  DH and I spent most of the day snuggling each other and the kitties.  I couldn't have asked for a better present!  This Christmas it was just our family; DH, me, and our three furbabies Sterling, Niki, and Katya.  I can't believe how lucky I am to have DH and our babies.  I also got some gifts from my pen pals, Laura, Rhonda, and Jo.  I made some small gifts for my friends and will be sending them out along with their late Christmas cards, in January.  

Sunday, December 25, 2011

Merry Christmas!


MerrChristmas!! 


I hope, you, my dear readers, have a wonderful Christmas with your friends and family.  




Saturday, December 24, 2011

Merry Christmas Eve!

Today is Christmas Eve, and day #2 of my flare.  I slept for four hours today, which was awesome, because I'd rather be in pain in my sleep than when I'm awake.  I know I dreamed a lot, but I don't remember my dreams.  That's another good thing, because my dreams while I'm in severe pain are always horrific nightmares.  My neck feels like it is broken but I'm trying to hold it up anyway.  Everything hurts, and I mean everything.  My earlobes even hurt!  I'm not sure why my earlobes hurt, and I didn't know fibro could accomplish that, bit apparently it can.

I've very excited about Christmas tomorrow, even if I am in a lot of pain right now.  We didn't put up a tree this year, along with many other cat lovers/people owned by cats across the world.  We are planning on making each other gifts on Christmas together.  I'm really looking forward to it!




We haven't watched any Christmas movies yet this year, but I hope to watch some tonight and tomorrow.  I don't think DH is fond of Christmas movies, so we'll see.  They aren't as much fun to watch by yourself.  I thought I'd make a list of My Top 15 Favorite Christmas movies list.  

1. Mickey's Christmas Carol starring Scrooge McDuck, Mickey Mouse, and Minnie Mouse



2. How the Grinch Stole Christmas starring Boris Karloff



3. A Charlie Brown Christmas starring Charlie Brown and Lucy



4. Garfield's Christmas starring Garfield and Odie



5. The Polar Express starring Tom Hanks



6. The Bishop's Wife starring Cary Grant and Loretta Young



7. The Lemon Drop Kid starring Bob Hope



8. National Lampoon's Christmas Vacation starring Chevy Chase and Randy Quaid



9. Home Alone 1 & 2 starring Macaulay Culkin and Joe Pesci



10. The Santa Clause 1, 2, & 3 starring Tim Allen



11. Elf starring Will Ferrell



12.  Rudolf the Red Nosed Reindeer starring Burl Ives



13. Frosty the Snowman starring Jimmy Durante




14. Santa Claus is Coming to Town starring Mickey Rooney




15. White Christmas starring Bing Crosbey, Danny Kaye, Rosemary Clooney, and Vera Ellen




What are your favorites?

MerrChristmas Eve!! 

Friday, December 23, 2011

Good morning!

Yesterday was the winter solstice, so that means from here on out the days will be getting longer and the nights will be getting shorter.  It was also the first day of winter, so here on out we can now say we are having winter snowstorms, next time it snows, that is.

Tomorrow is Christmas Eve and I'm so excited.  This is our kitty Katya's first holiday season.  So far she loves Christmas.  She's been playing as much lately as any time, which is a lot, so I'm taking that to mean she loves Christmas.  Right now she is sitting on the couch near me cleaning her face and paws.  Her and Niki are best friends now, and her and Sterling also get along great.

I am in the middle of my regular morning routine, which is:

  • Wonder how I could have slept on my shoulder/neck/ knee, hip, etc. so wrong to make it hurt so bad
  • Make DH some coffee
  • Pick up each kitty and kiss them
  • Take turns with DH on watering and feeding the kitties
  • Wash my face
  • Brush my hair
  • Get my Pepsi Max (I think I'd die without it)
  • Check gmail
  • Check Twitter
  • Check Facebook
  • Fill out my sponsored tweets of the day
  • Put on either wrist braces or arthristis gloves
  • Put on Oval-8s (finger splints)
  • Wonder again how I could have slept on my shoulder/neck/ knee, hip, etc. so wrong to make it hurt so bad
  • Take Aspirin if the pain is too much
  • Wish I didn't take Aspirin because my heartburn then stomach upset is almost immediate
  • Rub Aspercreme on most needed small area body spots, as needed
  • Make a cup of tea - two Splendas
  • Make an entry in my pain journal
  • Wonder again how I could have slept on my shoulder/neck/ knee, hip, etc. so wrong to make it hurt so bad
  • Take my meds
  • Eat crackers
  • Take my vitamins
  • Eat breakfast when I don't feel sick to my stomach


I'm about halfway down my morning routine list now, but I'm already sleepy.  Today my pain levels are pretty high, so I'm going to probably be messing around online to try and bring them down some.

Yesterday I entered a lot of blog contests, I'll probably do the same today.  I worry that people will get pissed at me for all the contest posting on Twitter and Facebook.  I really hope they don't, but I have to do the posting to get more entries.  Well, I do believe I'll be off to the blog contests now.

Merry Christmas Eve Eve!! 

Wednesday, December 21, 2011

Classes over!

I have now completed my first semester of grad school!  Yay!  I'm so excited!

Two of my three text books (the other is a lot bigger) and my inspiration in a frame


Once my hands get back to normal (not hurting so bad from writing so much for class) I'll be able to start blogging again and more regularly.

Sunday, December 18, 2011

"The Creek"

I wrote this in June 2009.


“The Creek”

Slosh, slosh.
Red rain boots stomp
through the almost stagnant water.
She cups her hands,
cradling a jellied
mass of tadpoles.
I’ll raise these on my own,
she says.
Slosh, slosh.
The red rain boots go inside,
only to watch the tadpoles petrify, die.
Her nose isn’t safe
from the rotten smells,
yet childlike hope keeps her waiting, waiting,
for them to wake up.
Slosh, slosh,
he is waiting outside.
Seeking his approval
she catches him a crawdad.
It pinches her,
she bites her lip not to cry in front of him.
She wants to be brave.
He points out a rock,
slick with the slime of summer.
It used to be a frog, he says.
He lies.
She bites her lip,
tastes blood.
I hate you,
he tells her.
The tears slip out.
I love you,
I want to have a friend,
she whispers.
She wonders if the words should not
have passed her lips,
wondering if he won’t be her friend now.
She chastises herself on the inside,
where its safe.
Only she can hear herself speak now.
Loudly,
I’ll do anything,
she says.
She leans into his ear,
In a child’s whisper,
can I still be your friend?
Her eyes water as she stares into the sun.
God lives there, she knows.
Should she turn out her heart to Him,
or keep it safe inside?
I want to be a good girl,
she spells it to herself over and over.
I want to be a good girl.
She smiles, her mind lost in thought,
her fingers absently
bringing the ends of her hair to her mouth.
God lives behind the sun.
If she stares hard enough she could see Him.
Quietly, her eyes streaming,
she wonders if God would want to listen.
Turning her head toward damp earth,
she is suddenly chilled.
She holds her tears inside,
instead she follows him through the water,
deeper into the woods,
her red rain boots making
the only noise she can hear.
Slosh, slosh.

~Amy
June 2009

Thursday, December 8, 2011

Started Magnesium


I'm taking an incomplete in my last class, Business and Organizational Writing.  I've had a lot of health problems since class started, about seven weeks ago, hence the reason for the long absences lately.  My bipolar, chronic pain, and epilepsy have all been kicking my ass.  I need to have all my work in by the 20th.  I've been working on my assignments but I don't feel like I'm doing it good enough.  My professor is excellent, and while I know I will be a better writer because of her tough grading, I still need good grades to stay in grad school.  That means I really need to increase the quality of my writing, or at least write to her specifications.  Her remarks always make a lot of sense, though, and she explains why she marks something wrong.  This is my second class (my first semester) and I'm really impressed with my university.  I'm really excited about my next classes for the Spring 2012 semester.  I'm taking a class on political writing and a class on financial writing.  Awesome, huh?  I'm so excited! DH says the excitement over grad school wears off eventually, and it certainly did during my undergrad, but this euphoria hasn't worn off yet.

Our new kitty, Katya, and Niki are becoming best friends.  They actually curled up together today, touching even, and went to sleep.  It was so cute.  I got a picture of them, but by then they had moved a few inches apart.

I started taking magnesium after reading quite a few good things about it.  The Dysautonomia Information Network has this to say about POTS, EDS, and magnesium:
Magnesium may be helpful to a number of POTS patients. Magnesium is sometimes prescribed to POTS patients with Ehlers-Danlos syndrome. Some patients report a decrease in arrhythmias after taking this mineral daily for a few weeks. Magnesium deficiency can cause many of the symptoms associated with POTS. Excessive norepinephrine levels can deplete magnesium levels. Magnesium should be used cautiously as it can lower blood pressure.
In the US Library of Medicine article on EDS hypermobility type:
Supplemental magnesium and/or potassium anecdotally may provide some muscle relaxation and pain relief. Diarrhea, nausea, and sedation are the most common side effects. Specific validated dose recommendations do not exist.
Dr. Weil says this about POTS and magnesium:
I suggest taking supplemental magnesium, which may help slow the rapid heartbeats characteristic of POTS. Start with 125 mg of magnesium twice daily and move up slowly to 250 mg twice daily, advancing every couple of weeks to get to 500 mg twice daily if you don't get symptom relief with lesser doses. Look for magnesium citrate, chelate, or glycinate. Avoid magnesium oxide, which can be irritating. Add calcium (500 mg twice daily) if the magnesium causes loose stools.
Physiopedia has an article about EDS; "Supplemental magnesium/potassium - muscle relaxation and pain relief" appears under the medication header.

About.com Fibromyalgia guide has this to say about fibromyalgia and magnesium:
Magnesium malate combines magnesium and malic acid. Both substances help produce energy in the form of adenosine triphosphate (ATP), which studies show can be deficient in fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS). Magnesium helps cells form and maintains muscles, bones and nerves.  Some research supports magnesium malate for boosting energy and alleviating the pain and tenderness of FMS. Many doctors and patients say they've had success with it, but one controlled study showed it was no more effective than placebo. More studies need to be done on whether these supplements are helpful.
The alternative medicine site at About.com has this to say about fibromyalgia and magnesium:
Magnesium is a mineral found naturally in foods such as green leafy vegetables, nuts, seeds, and whole grains and in nutritional supplements.  Magnesium is needed for more than 300 biochemical reactions. Magnesium, along with malic acid (a fruit acid found naturally in apples) are often suggested for people with fibromyalgia because they are both needed for the generation of energy in cells in the form of adenosine triphosphate (ATP). However, one study of 97 people found no association between magnesium levels and fibromyalgia.  A double-blind study examined the effectiveness and safety of magnesium (50 mg three times a day) and malic acid (200 mg three times a day) in 24 people with fibromyalgia. After 4 weeks, the magnesium/malic acid combination was not more effective than placebo.The participants later received 6 months of the combination in larger doses (up to 300 mg magnesium and 1200 mg malic acid per day) for 6 months. This time, the combination resulted in a significant improvement in pain and tenderness, however, this portion of the study was open label (both the researchers and participants know which treatment is being administered) and not blinded, so the results, while promising, cannot be used as evidence that the combination was effective. Further studies are needed.  
A magnesium deficiency is common with hypothyroidism, if there is a deficiency magnesium supplements can help a lot.  Magnesium supplements can also improve insulin sensitivity, a problem with PCOS that can eventually cause diabetes.

I also want to check out some other vitamins and herbs.  I already take a multi-vitamin, fish oilB ComplexVitamin CVitamin D, and Calcium.  I'd like to go back on Ginkgo biloba and Chondroitin/Glucosamine.  I've heard a lot about MSMMalic AcidCoQ10Carnitine, and 5-HTP, as well.  I'd like to start one new vitamin, mineral, or herb at a time.  I want to do more research on these other supplements and herbs.  I am not sure what new supplement I want to try in January, but I imagine it will be either Malic Acid or Ginkgo Biloba.  I was going to get some glucosamine and chondroitin this month, but it proved way too expensive.  They sold some at Dollar Tree, which excited me at first.  Once DH and I looked at the mg's in it, though, we realized I'd have to take eight pills a day to get the same dose as a regular bottle of it at Wal-Mart.  It would end up being expensive and swallowing all those pills makes me sick to my stomach.  I ate crackers with all my vitamins today and it helped a lot, because I didn't feel sick after I swallowed them all.

DH also makes me ginger tea from a fresh ginger root.  It's annoying to make and it feels really slow when I am in a lot of pain.  The tea really works well for pain relief, though.  I want to see if I can find ginger tea at the store that would do the same thing, or almost as good.  I think it tastes horrible, but that is probably because I don't like ginger.  

Monday, December 5, 2011

Pain diary/Food diary for the last two weeks

Tuesday 22 November 2011

Food:
2 bowls blueberry morning
skim milk
coffee with creamer
ice cream
biscuits
Cambell's sausage gravy

Pain:
wake: 11:15 am
pain 5/10
stiffness is minimal
low pain
able to walk around the house without problems
energy higher than normal
9ish:
pain wave/pain spike
pain 8/10
11:26 pm
pain 7/10




Wednesday 23 November 2011

Food:
blueberry morning
skim milk
Lean Cuisine Chicken Club
Coffee with non-fat creamer
2 bites of a peach
lasagna
nonfat cottage cheese with crushed pineapple in its own juices

Pain:
wake: 11:15 am
pain 6/10
8:20 pm
back, hip, thigh pain 7/10
went to grocery store
slightly subluxed left hip
all day: average 6/10


Thursday 24 November 2011

Food:
THANKSGIVING
2 frozen waffles with no syrup
ham with cherries and pineapples
Stovetop stuffing
2 rolls
Cranberry/rasberry lite sauce
Pumpkin pie with fat free cool whip

Pain:
Forgot Meds Last Night
wake: 9:30 am
stiffness 8/10
pain 8/10
fatigue 8/10
couldn't even lift my hands to brush my hair I was so fatigued
later:
nap from neck pain
pain 8/10
4:27 pm
neck pain 8/10
fatigue 7/10
overall pain 8/10
8:15 pm:
neck 8/10
overall pain 7/10
fatigue 7/10



Friday 25 November 2011

Food:
Cranberry/rasberry lite sauce Thanksgiving leftovers
4 frozen waffles with no syrup
1 orange
3 bites pumpkin pie with fat free cool whip

Pain:
wake: 7:45 am
pain lower than yesterday
very stiff
pain 6/10
5:19 pm:
stiff
back, leg pain
pain 7/10
1:30 am
back pain
sore throat all day - feels like a golf ball is stuck in it
throat very red, but not swollen
pain 7/10



Saturday 26 November 2011

Food:
orange
chocolates
3 pieces of pizza

Pain:
wake: 11:15 am
pain in right shoulder, back, legs, hips
pain 7/10
fatigue 5/10
FLARE
pain - severe
crying from pain
shoulders, back, legs, hips, elbows, neck pain
pain 9/10
8:12 pm:
neck, back, shoulders, legs, knees, hips, buttocks, feet
pain 8/10
fatigue 7/10


Sunday 27 November 2011

Food:
2 pieces toast with margarine
2 bowls bran flakes
skim milk
chocolate cool whip

Pain:
wake: 10:45 am
pain all over
stiff
pain 7/10
12:00 noon
severe hand, feet, toe pain
crying from pain
pain 8/10
5:09 pm:
back, arm, hand, torso, breasts, legs, hips, knees, groin, ankles, calves, thighs, shoulders, neck pain
pain 8/10
fatigue 7/10
6:00 pm
seizure
7:05 pm
cold, achy
beat up feeling, sore, feel like I've been kicked all over
Stayed up all night to work on a writing assignment




Monday 28 November 2011


Food:
Lean Cuisine Chicken Club
Skinny Cow chocolate
Sugar free strawberry jello/sugar free strawberry fluffy stuff
nonfat cottage cheese with crushed pineapple
frozen fried clams (we cooked them in the oven)
pizza rolls

Pain:
Only slept 1 1/2 hours because I was studying
Forgot night meds last night
wake: 5:00 am (after sleeping 1 1/2 hours)
hurt all over!
eyes dry, jaw, neck, shoulders back, arms, elbows, wrists, hands, hips, torso, breasts, knees, legs, ankles, feet, fingers, toes pain
bad POTS day
pain 7/10
fatigue 7/10



Tuesday 29 November 2011

Food:
bran flakes
skim milk
chocolate pie
pizza rolls

Pain:
wake: 11:15 am
slept good, deep sleep
stiff, achy
pain 6/10
3:38 pm
back, arm, leg, ankles, foot, hip pain
pain 5/10
fatigue 5/10



Wednesday 30 November 2011


Food:
bran flakes
skim milk
chocolate pie
fish sticks with ketchup

Pain:
FLARE
Forgot last night's meds
all day 9/10, close to a 10/10
lots of tears
incredible pain
fatigue is horrible






Thursday 01 December 2011


Food:
cherry poptarts
fried rice
crab ragoon with sweet and sour sauce
sesame chicken

Pain:
wake: 8:00 am
wrists, shoulders, back, legs, hips, buttocks, toes pain
pain 8/10
fatigue 7/10
Started taking magnesium today



Friday 02 December 2011

Food:
2 bowls bran flakes
skim milk
leftover fried rice
leftover sesame chicken

Pain:
Stayed up all night
back, ankles, knees, left leg pain
pain 7/10
2 naps today
9:39 pm:
neck, hips, buttocks, thighs pain
pain 7/10



Saturday 03 December 2011

Food:
bran flakes
skim milk
3 pieces pizza

Pain:
wake: 9:00ish
stiff, achy
pain 7/10
chased Niki and pulled a muscle in my back
pain is 8/10
7:20 pm:
severe back pain all day
pain 7/10 after laying down and drinking ginger tea



Sunday 04 December 2011

Food:
2 bowls bran flakes
skim milk
2 maraschino cherries
1 bowl ice cream
BBQ tortilla chip
3 pieces pizza

Pain:
Pulled muscle in back yesterday
wake: 11:30 am
back pain!!!
pain 8/10



Monday 05 December 2011

Food:
coffee with creamer
bran flakes
skim milk
ice cream
BBQ tortilla chips
Lean Cuisine Chicken Club
Crunch 'n Munch

Pain:
wake: 9:15 am
pain 7/10
12:15 pm:
back, stomach, legs, neck pain
shaky when standing
nauseated from taking vitamins on an empty stomach
really nauseated when bending over
pain 7/10
7:50 pm:
shoulders, back, arms, fingers, hips pain
bad POTS day
pain 7/10 and rising

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