Amy's 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 ~ 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 ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Thursday, December 30, 2010

Cynical or no cure?

Good news, though, we got our disability today so no more soup kitchen!  Yay!  I'm not sure I have any pride left anyway.  We can get black ink today and I can print off letters to my lovely pen pals...and mail them!  I think that calls for another yay!  DH got me Chicken McNuggets from McDonald's for breakfast.  We got a circular in the mail today with a picture of a 50 piece McNugget.  I thought they were mini-McNuggets, along the lines of mini-M&Ms.  You may get 20 M&Ms in your handful but you'd have like 40 minis in your handful.  I couldn't fathom why one person would want 50 regular size McNuggets.  When DH told me that they are regular size McNuggets I realized that the 50 piece size is for parties.  So my sweet DH brought me a 10 piece for a very late breakfast and they were very yummy.  

Am I cynical, or coming to grips with reality?  I don't think there will be a cure for V-EDS anytime soon, not within the next five years, anyway.  I don't think there will be a cure for H-EDS anytime within the next fifteen years.  They don't even have a genetic test for it yet (which DH reminds me of constantly) so I doubt they will be curing it soon.  I don't believe that there will ever be a cure for ME/CFS, IBS, or fibromyaglia.  I'm having a lot of hand pain today.  I had planned to make a little something to go with my pen pal's Christmas presents, but my hand pain has prevented that in the last few weeks.  I can't handwrite either, so I'll be typing letters for awhile.

For some reason I find myself empty and a bit depressed today.  I think when I get stamps and printer ink I'll be happier.  I mean I think I'll be ecstatic when I get stamps and printer ink.  I hate not being able to mail letters to my pen pals.  It isn't fair to them to not get letters because of my financial problems.  I love my friends very much and am surprised they are still my friends as often as I have to wait for money for stamps.  I hope I am as good of a friend to them as they are to me.


Sterling and Niki have been taking turns the last four days during my flare with spending time with me in our bedroom. They are such good little kitties. They cuddle and snuggle me. When I get lonely stuck in the bedroom or I cry because the pain is so bad, the kitties are there. I love being a Kittymommy.

I have decided to try to do as much as I can naturally.  I was exercising before I went into this flare.  A combination of the stress of a houseful of people, stopping Lyrica cold turkey two weeks ago, and running out of Flexeril (muscle relaxer) put me into this flare.  I'm sure the exercise help put me here as well.  Eventually I hope that the exercise will keep me out of flares rather than put me into them.  I made the bed this morning and had to rest for twenty minutes afterwards because I was so incredibly worn out, shaking so hard, and in so much pain.  I want to start using as many natural remedies as I can.  I already use some herbs to help me, just basic ones: chamomile, peppermint, etc.  I think that there are so many natural and safe healing substances out there that I have yet to explore.  I must add that I want to be not only natural but also safe.  Opium is natural, but not safe.  See my point?  I want get healthier and on less medications so I can be a Mommy to human babies as well as the furry four legged kinds.  I want to be a Mommy so bad.  I have babies on the brain.  I feel called in life to be a wife and mother, two wonderfully important jobs.  We want to homeschool our kids. I believe we will only have one kid, since we are both disabled.  We both need to get in better health to be parents, though.  How do you stop my joints from subluxating and dislocating, though?  How do you stop Jim's roughly ten seizures a day?  If things don't change we can't have babies because we wouldn't be able to be the parents we need to be.  My EDS is degenerative, but I will try my best to slow down that process.  I don't know how much power I have over that, but I do believe I have some power.

Monday, December 27, 2010

Bring On the Rain

"Bring On the Rain" by Jo Dee Messina



Another day has almost come and gone
Can't imagine what else could go wrong
Sometimes I'd like to hide away,
somewhere and lock the door
A single battle lost but not the war

Cause tomorrow's another day
And I'm thirsty anyway
So bring on the rain

Its almost like the hard times circle 'round
A couple drops and they all start coming down
Yeah, I might feel defeated,
And I might hang my head
I might be barely breathin -
but I'm not dead (no)

Cause tomorrow's another day
And I'm thirsty anyway
So bring on the rain

No, I'm not gonna let it get me down,
I'm not gonna cry
And I'm not gonna lose any sleep tonight

Cause tomorrow's another day
And I am not afraid
So bring on the rain

Tomorrows another day
And I'm thirsty anyway
So bring on the rain

(Bring on, Bring on the rain)

No I'm not gonna let it get me down

I'm not gonna cry

So bring on the rain....(rain...)

(bring on, bring on the rain)

bring on the rain

bring on the rain

bring on the rain 

Tuesday, December 21, 2010

Are you a 'hip crip?'

I recently looked at the lists I am listed in by other people on Twitter.  Quite a few of the people called the grop I was in "hip crips."  Maybe it's just me, but when I think of myself I am not a "crip."  I am not crippled I am mobility impaired.  I have no problem saying I'm disabled, but a "crip?" No, I do not think of myself that way.

Is this blogged stemmed from some sort of denial?  I guess it could be, but I sincerely doubt it.  I just don't belong in those groups.  The other bothersome groups I found myself listed in were three "team gimps."  Do I even have to say how crazy that drives me?

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