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) ~ Self-Harm ~ Bilateral Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ Eczema

Saturday, March 28, 2015

15 things you learn in your 30s (and maybe late 20s)

I'm 33 now, and I've compiled this list of things I've learned since I've turned 30:

1)  All those years of forgoing moisturizer, especially on your neck, start showing when you hit 30.  Now you moisturize, moisturize, moisturize, but it's harder to fix things than prevent them.

Garnier Moisture Rescue Refreshing Gel-Cream for Dry Skin
The moisturizer I use: Garnier Moisture Rescue Refreshing Gel-Cream for Dry Skin

2)  By the time you reach your 30s, you will need to start considering dying your hair to cover the gray.  You used to think that wouldn't happen until your late 40s, but this is simply not true.  Of course, if you are trying to get pregnant you'll either have to use henna, which kinda sucks, or you'll have to wait until you're pregnant and in the second trimester, because you won't know you're pregnant until it's already happened.

Woman going gray
Going gray

3)  Starting in your early 30s you realize it's getting harder to see things close up.  I know you thought that you'd be around 50 before that happened, but again, that's simply not true.

Please tell me reading glasses are a long way off!
Please tell me reading glasses are a long way off!

4)  You will start feeling the urge to visit "home," which in my case is the Ozarks.  Honestly I'm not close to my living relatives there, it's the land I miss...hills, trees, rich soil, fresh, crisp air, wildlife, rivers, caves...these are the things I can't stop thinking about.

The Ozark Mountains
The Ozark Mountains

5)  Your older relatives, all the ones that mean the most, will start dying off.  It's heartbreaking and unfair.  Also, you become aware of your own parents' mortality and it terrifies you.

I miss everyone who has left this world so much
I miss everyone who has left this world so much

6)  The little things don't matter.  Things that once meant so much to you, like buying cool new toys for yourself, start to not mean as much anymore.  "Grown up stuff," like paying your bills and getting practical items suddenly take precedence, and it doesn't bother you that much.

Paying bills
Paying bills

7)  You become more thankful for things in your life.  Things you used to take for granted now mean a whole lot, like a phone call from your mother.

Woman on the phone
On the phone

8)  You'll become more open minded.  You put yourself in other people's shoes a lot easier, and can empathize with others even easier than before.

Become more open minded
Become more open minded

9)  Family becomes more important.  While you used to crave time with other people, now you find that you crave family time much more.

This Awkward Family Photo reminds me of DH and me in a few years
This Awkward Family Photo reminds me of DH and me in a few years

10)  You'll start having more friends pass away.  This needs no explanation.

I miss you terribly
I miss you terribly

11)  Getting pregnant in your 30s is harder to do, and at 35 your pregnancy will be considered a "geriatric pregnancy."  Your fertility decreases (your eggs are 30 years old!) and it will be harder on your body to carry a little one for 9 months.

I'm gonna be old when you graduate, future baby
I'm gonna be old when you graduate, future baby

12)  You'll start caring a lot about world news, when before it was hard to imagine why something on the other side of the world would effect you that much.  You start to realize how interconnected we all are.

Gay rights activists in Russia
Gay rights activists in Russia

13)  Your political opinions will change.  It becomes more important to you to have a well defined set of ethics and politics, and you will become even more passionate than before about making the world a better place.

I've always voted, but I am more politically active in my late 20s and early 30s than I ever have been

14)  You will start taking pride in your home, your baking skills, and other domestic things.  You'll start to enjoy things you never did before, even doing laundry, because it is a calming task to do.

Baking is fun kids!
Baking is fun kids!

15)  You'll stop caring so much what other people think of you.  You'll want to lose weight to be healthier, not because you can't stand your body if you aren't thin.

I love myself (most of the time) and I just want to be healthy and happy
I love myself (most of the time) and I just want to be healthy and happy

Of course, these are my experiences, and not everyone is the same.  In all honesty a lot of these things began in my late 20s and became more solidified in my 30s.  I imagine some people are the opposite of everything on my list, but everything on this list obviously applies to me.

Me now, at age 33

Thursday, March 26, 2015


I'm not sure why I'm so much more exhausted than normal lately.  My body feels like it's made of lead and I'm trying to walk through mud that rises past my shoulders.  It's hard to think and I feel like my brain is full of cotton balls, also termed "brain fog."  Brain fog is very common with people who have EDS, POTS, and/or fibromyalgia.  I had to decrease some of my medications, so perhaps that has something to do with it.  My muscles keep cramping and spasming today, too, with random muscle jerks in my arms, legs, and my bum muscles.  Sometimes I get those jerks before having a seizure, but I don't feel like I'm going to have a seizure.  I've already taken two naps today, and I took two yesterday.  I still feel like I haven't slept in 24 hours, though, and I can barely keep my eyes open.

I need to do some laundry today, no matter how tired I am.  I'm getting low on clean underwear, and I used the last towel for my shower this morning.  I prefer to wear long sleeve shirts year round because I need my joints protected from the cold, whether it's wintertime cold, or summer air conditioning cold.  I want to find a place online where I can stock up on basics, like soft long sleeved shirts.  I prefer soft cotton ones because my skin hurts even with what should be nonpainful touch.  Today even my wrist braces and Oval 8s hurt both my skin and the muscles in my hands and wrists.  I'm not bruised but I feel like I am.

My mom called today and I had a nice chat with her.  I wasn't expecting her to call, so it was nice to hear her voice.  She volunteers at the Church and she called me while she was taking a break.

I'm falling asleep at the computer, so I'm going to go take a short third nap with DH.  Of course he hasn't already napped twice today.  

Wednesday, March 25, 2015

Pain wears you out and lowers your self-esteem

Today has been an icky day, as well as yesterday.  My joints and muscles are hurting really bad, and I'm just so worn out from the pain.  I feel like crying.  I have so much to do, I need to wash a load of laundry, fold the clean laundry piled up in the bedroom, clean the living room, vacuum, clean off my desk and find places for the books stacked on it, do my recumbent bike, clean the bathroom...  The list is endless.  I get so much anxiety when the house isn't clean, and though I love DH very, very much, he only cleans about twice a year.  He does all the cooking, though.  Right now my arms and back are on fire and cramping up because I am typing.  Sometimes I just don't know how I'm supposed to keep going through all this pain.  I hate myself on days that I don't clean, and I haven't got any cleaning done today.

I was so exhausted last night that I didn't do my nightly moisturizing routine.  I have KP, or Keratosis Pilaris, which some people call "chicken skin."  It's incredibly common, it's estimated that 50% of the population in the US have KP.  A lot of people don't know that they have KP because they have a light case.  KP is little bumps on the skin that are made from hair follicles plugged with keratin.  Sometimes the little bumps are flesh colored, but sometimes they are red, which is what mine are like.  There is no cure, and any treatment creams are usually very expensive, that is until Gold Bond recently came out with Gold Bond Ultimate Rough & Bumpy Skin Daily Therapy Cream, which is only about $10.  It's a thick cream that fights KP and extremely dry skin.  KP usually shows up on the back of the upper arms and the back of thighs, though I've seen pictures online of people with it on their face.  My KP is on the front, side, and backs of my upper arms, the top of my lower arms, my bum, the top of my back, my chest, my shoulder blades, my breasts, my stomach, and the front of my thighs.  Spring and fall are the worst times for all skin conditions, so every spring and fall it seems to show up in new places.  I also have it lightly on my lower legs, though I don't use the cream on that part.  Since I've had the Gold Bond Ultimate Rough & Bumpy Skin Daily Therapy Cream, I've been putting it on every night, along with my regular moisturizer for my face and lotion on my feet.  It takes forever to moisturize my very dry skin, and without that I'm prone to rough and dry patches of skin, as well as the KP.  If I go without any face moisturizer for 24 hours my cheeks get red and irritated, and I get dry patches on my forehead and cheeks.  EDS causes extra sensitive skin.  I've been using the cream for about two weeks now and I do see a difference.  Last night I was exhausted, and it was the first night since I got it that I didn't use it.  Like I said, the pain is exhausting.  The difference isn't huge, but I can see one.  I'm hoping that it will show a bigger difference at four weeks of use.

Gold Bond Ultimate Rough & Bumpy Skin Daily Therapy Cream
Gold Bond Ultimate Rough & Bumpy Skin Daily Therapy Cream

I also feel so guilty if I haven't done anything useful that day.  No one makes me feel that way, it's just how I feel about myself.  It makes me feel so useless.  I've been under my heated zebra throw all day.  Unfortunately I can't cover all of myself at once with the throw, so I've had it on my lap, with my legs and ankles covered, and wrapped around and under my hips.  DH massaged my lower legs, under my knees and above my ankles last night, which helped a lot but ended up hurting his hands.  Since I'm trying to get pregnant I had to cut my medications down, so the pain, and because of that the fatigue, is very bad some days.

I'd love to blog more, but I really can't right now, because I'm just in...guess what...too much pain.  I'm going to go lie down in bed with the heating pad I keep plugged in and ready in the bedroom.  We have company, and I feel so humiliated when I cry in front of company, though it wouldn't be the first time I did.

Friday, March 20, 2015


As most of you know, I'm stuck home most of the time from chronic pain.  We don't have a car at the moment, but will be buying one from a friend very soon.  I'm very excited about that.  My 1994 Chevy Lumina Euro has seen it's final days and will be headed for the scrap yard soon.  I wrote a poem about how I feel stuck at home; it's my first poem in years.  I've shared poems twice before, you can read them here and here.  Unfortunately, I find pain, fear, depression and desperation seem to help the writing process.  If you look at most of the great writers, a great many of them suffered depression or bipolar disorder.  Many also self-medicated with addictive substances, though fortunately I don't have that problem or issue.  Once we get the car I will be getting out of the house more, for a few reasons.  First, I'm losing my mind in here, and when you pit depression and anxiety versus pain, I prefer the pain any day.  In my experience I can handle any level of pain better than I can handle bipolar depression or bipolar mania.  I'd rather be stuck in bed crying and unable to move from pain, than exist in a numbed and hopeless state, or a fast, irrational, unpredictable manic state.  Second, I have a very poor quality of life.  I will be in pain if I'm here, or if I'm not, so why not have a higher quality of life and be in pain?  Third, I would like to be a mother someday, and it isn't an option to be stuck at home all the time if I'm a mom.  Fourth, I miss being around people, even if it's just the grocery store.  I'm in an introvert, in that people can wear me out, but I still love being around people and miss hearing other people talk and laugh.  Some people have the mistaken assumption that I have agoraphobia, which is not true.  I love getting out of my prison, it's the pain that has kept me here.  It doesn't help that my car (through no fault of my own) was always in a disgustingly messy shape, has no air conditioning, and rides rough.

I wrote this poem about how much I hate my life this way.  Please don't leave me nasty comments about the quality of my poem, I'm sharing it on my personal blog, not sending it into a literary journal.

TRIGGER WARNING:  Contains violent imagery


these four walls
are my prison
only my mind escapes
yet it leads me down a dark path
of shadow demons with
their eyes gouged out,
their faces melted with acid,
smelling like a wet dog

they close in on me, my body betrays me,
my feet are on fire,
pain shooting up and down my legs

My knees shake
I can't trust my legs
engulfed in the sharp pains of a long ice pick
hammered through my heels,
stretching into my hips

my shoulders ache
to hold up my breasts
my mind looks for escape
only to get tangled
in rusted barbwire

at one time I was beautiful
and full of life,
jogging, laughing, swimming, fishing
but that was a long time ago
before my body morphed
into the mess it is today

now I'm stuck
within these walls,
they smother me
I used to be beautiful
stood tall with confidence
I wasn't always
the person you see now

stuck in these four walls
has been the loneliest
experience of my life
alone but not alone

I'm alone
connections severed
from the life I used to live
back when my life had purpose
back before I was imprisoned
in these four walls

Monday, 09 March 2015

Monday, March 9, 2015

A thought

A sobering thought occurred to me last night and now I can't get it out of my head.  If I were to die tomorrow in a car accident or something, the only people in the world that would miss me are DH and my parents.  Maybe my sister, but only because my parents would miss me, otherwise I don't think she'd miss my existence any.  Unless DH told them "Amy died in an accident last night," no one would even notice, much less care.  Even if they did notice because DH told them, they still wouldn't care.  They might feel bad for DH, but really they wouldn't think about it beyond a conversation with him.  Before you ask, I'm not suicidal or anything, I'm just suddenly aware of how little my life affects others.  I think there was a time that quite a few people would notice I wasn't there, but not now.  I'm stuck home most of the time, I'm friends with people online and have many pen pals, but never get to see anyone in person except DH's friends.  How long would it take before no one could no longer even remember who I was?  Four days?  A week?  A week and two days at the most?  I'm not saying I hope I die in some freak accident, I actually want to be alive a very long time.  I only mean that no one would even notice or really care.  Everyone would just think I lost touch with them, and I'd be out of sight, out of mind.  This thought is both eye opening and very sad.

picture from Google images

Thursday, March 5, 2015

Happy World Book Day!

Today, as you can probably tell from the title of this post, is World Book Day.  I've been hooked on books since before I knew how to read.  When I was a toddler I carried my baby doll Crissy and my Little Golden Book Disney's Peter Pan everywhere with me.  I have a very short attention span, so I always read more than one book at a time.  Some people think that would make it easy to get characters mixed up in the different books, but I can honestly say that has never happened to me.  Try it for yourself, you'll probably like it.  So, without further ado, I'm going to talk about the books I'm currently reading, and why you should read them too.

The Silence (ARC) 
by Tim Lebbon
400 pages
ISBN: 1781168814

I just started this book last night.  It takes place in 2016 in England, and is about a deaf girl and her family.  Just pages into the book the action starts with strange blood thirsty creatures escaping from a cave that's been sealed off from the rest of the world for millions of years.  Because the cave has been sealed off for so long a whole new ecosystem, quite different than ours, has formed.  After the creatures escape they leave thousands of people dead, and millions more terrified of being next.

Kiss the Girls and Make Them Spy 
by Mabel Maney
288 pages
ISBN: 0380803100

Do you like James Bond?  Me neither.  He's a womanizing asshole, and his actions just infuriate me.  Well, here comes James' sister Jane, a lesbian in 1960s England.  She's recruited to substitute for her brother in a meeting with Queen Elizabeth, because he is in a mental hospital.  This parody of the James Bond series is hilarious, engrossing, and romantic.  Jane makes a much better hero than James does, any day of the week.

Myths of the Ancient Greeks
by Richard P. Martin
346 pages
ISBN: 0451206851

I don't know nearly as much about Greek mythology as I'd like, so this seemed like the perfect book to start with.  Dr. Martin is a leading expert in his field, and his research is supposed to be very accurate on what mythology the ancient Greeks told.  There are times I have to reread a paragraph or so because the book is a little dense, but overall it's great.  My biggest problem is pronouncing the Greek hero's and heroine's names.  It gets a little confusing because of the vast amount of names and stories in the Hellenic stories, some names differ very little from each other, but it's so interesting it's hard to stop reading.

Before Your Pregnancy: A 90-Day Guide for Couple on How to Prepare for a Healthy Conception 
by Amy Ogle, M.S., R.D. and Lisa Mazzulo, M.D.
608 pages
ISBN: 0345518411

DH and I are trying to conceive.  This is the second book I have on pre-pregnancy, the first one is What to Expect Before You're Expecting by Heidi Murkoff and Sharon Mazel, which I also like.  I've learned a lot of information from the book so far.  The book concentrates a lot on nutrition, which is something I struggle with.  Most days I don't even get 1,000 calories, Metformin takes away my appetite, so this is an ongoing problem for me.  It provides information on fertility, constraints for women trying to conceive, and even information and advice for the father to read and follow.

I always keep an updated list on my blog in the lower right hand side of the books I'm currently reading.  I hope that today you are enjoying World Book Day with a good book.  Read outside in the park, read in the bathtub, read on the bus, read on the couch covered with cozy blankets, and read in bed while the rest of the world sleeps.  Happy reading!

My book and me...excuse how bad I look, I'm in day #5 of a flare


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