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

Monday, June 13, 2011

EDS never plays nice

Another person in the EDS Community has been lost, though this time it was not to EDS. Barbara Mostow Goldenhersh passed away from breast cancer this June, a few days ago.  Another EDSer is fighting for her life in the hospital.  EDS is such a stupid, stupid disorder.  Not only is it a thief, stealing someone's life and dreams away from them, but it also is a murderer.  It doesn't care whether it steals from or murders a child, mother, father, brother, sister, cousin, aunt, uncle...it doesn't matter who you are.  EDS steals such a big part of your life away, so many of your dreams, your plans for the future.  EDS steals it and leaves your mangled body for you to pick up and find new hopes and dreams if you are lucky.  If you aren't, EDS sneaks in, murdering those unlucky enough to be born with the vascular form of this horrible disorder.  I wonder sometimes where on the "horrible scale" it is when people are not yet at the stage to accept EDS.  It is a hard place to be for long, and it is somewhere you don't want to hang out.  Yet there are those who let themselves live in that lonely place.

Right now I'm finding it hard to deal with EDS.  It's always harder for me to deal with it when it's after an EDSers death, even though that's not what took Barbara from this world.  She shouldn't have had to suffer EDS then get something horrible like breast cancer, too.  It's not fair!!! Why did she have to??? Why???  And why won't EDS ever play nice????????????


Thursday, June 9, 2011

Rescheduling, rescheduling, rescheduling...

I've been horribly absent from the blogging world lately and I do apologize.  I rescheduled my cardiologist appointment.  DH had three seizures that morning so we didn't get to go to University Hospital.  I had my rheumy appointment yesterday and had to reschedule that because my baby once again had three seizures the morning of my appointment.  I am really worried about him.  He not only has seizures in the morning now, but also in his sleep.  It used to be mainly in the evenings and at night before bed.

We are also having car problems (again).  The warning light keeps coming on saying the car needs coolant.  The thing is, the car has coolant and water in it.  We don't know what is going on but I trust DH to find out.

We are under a tornado watch right now and my BIL in Wichita, KS just called and they have spotted three tornadoes.  The whole Midwest and Northeast, according to the weather channel, is having major storms.  It isn't storming (yet) here.


I'm a bit frustrated that it is always something that keeps me from getting to my doctor appointments.  The last time it was car troubles, money, and I was too ill.  This time my honey was too ill.  I'm afraid next time our car will not be driveable, what with the light coming on and the reservoir of antifreeze and water emptying into a leak.  I can't even begin to search for an answer to my questions about the possibility of Chiari until I get these two and my endocrinologist out of the way.  I am so frustrated!

I've been having a new heaviness with pain, stiffness, and a feeling of swelling in my legs for awhile now.  I'm not sure, but I don't think they do swell, except for my hands, ankles, and feet.  They only feel okay when my hips and knees are straight.  I used to stretch by straightening out as straight as I can in bed and I could never sleep that way.  Now I sleep with my legs straight, often on my back or stomach, instead of curled on my side like usual.  Of course I still have a pillow between my knees to align my spine while laying on my back or side.  Then, instead of tossing and turning like usual, my legs are so incredibly heavy that I stay in that one position as much as I can until I fall asleep and often stay in the same position in my sleep, too.  It started about five-ish months ago and it seems to be holding steady, but was much worse during the two months I took physical therapy.

I've also been having shoulder blade pain for about three months now that is different than before  It feels like someone is pouring acid on my shoulder blade, and only in a specific site.  Here is where it is:


Well, I guess that is all my news for now.  My birthday is Sunday, I'm going to be the big 3-0.  I can't wait!  I've wanted to be 30 since I was 18.  I feel like I just started living when I was 27 and got away from my abusive family, so this is a happy occasion for me.  :-)


Saturday, June 4, 2011

Fun post



I went to http://www.wordle.net and entered in this blog's URL.  It is supposed to show you what words you use the most and least.  Unfortunately, I'm pretty sure it just does the first page you see.  It's still pretty cool, though, isn't it?

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