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 Rapid Cycling ~ 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 Headaches

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.  :-)


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  2. Hi, I know this post is pretty old, but I was searching for shoulder blade pain related to winging scapula and your picture here came up. And go figure you have EDS! I have suspected for a year or so that I have EDS, but do not have a specialist I can see. My thoracic spine/shoulder blade pain is in the same area and it BURNS and tingles and stings and feels prickly. Every doctor I see has said my back "should not" hurt. Well...too bad cause it does... I was wondering if you ever figured out what caused it or got any help??

    1. Me too!! I am having same pain. I also have EDS and trying to find answers on this pain. 4 MRIs and no one knows. It really hurts for 4 years now. Any answers?


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