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

Monday, February 7, 2011

I had a dream I fell apart...oops that was real!

I had a dream that my body was falling apart.  I had dreams that are true to life!  I honestly think I have Chiari issues or something along those lines...cranial settling, cranial instability, tethered cord...something is going on and I don't know what it is.  I don't know if it is one something or more than one something, but there is definitely something going on.  I have horrible headaches that start when I lift my head off the pillow and only go away when I lay down on one pillow.  The pain decreases sometimes on two pillows, but not always.  I have heartburn that only goes away when I lay down, too.  I can't pee, I've had horrible constipation and recently started tinkling when I laugh.  How weird is that?  I can't pee when I want to but tinkle when I don't want to.  I don't know whether this is a pelvic problem or related to a neuro problem.  I don't know what doctor to see, I don't know what to do, and I am confused as to what the next step is.  I really hate EDS, but I'm trying to look at the silver lining of the raincloud.  I am thankful for my friends I've made that are fellow EDSers/zebras/bendies.  

I have a lot to do today.  First I need to call the cardiologist.  I keep missing the appointments with her.  She's really nice.  She's at University Hospital so there are also other doctors around with more experience.  She brought another doctor (I think the doctor above her in hierarchy) to meet me because I have EDS.  The other doctor was so surprised at my knowledge about EDS.  He admitted I knew way more about EDS than him and he asked if I was a medical professional.  I was excited that a doctor not only listened to me, but brought in another doctor who also listened to me and then gave me credit for the knowledge I have about EDS.  The only other doctor I've had that has been that awesome about EDS is my gynecologist, who also first noticed Reynaud's when my feet were gray, cold, and had a loss of sensation.  He actually noticed it before me, because, like I said, I had a lack of sensation.  It wasn't the first time it happened, of course, but it was the first time a doctor paid attention to it.  The second rheumy I saw (I only saw him once) made a comment about how my pupils are different sizes but never looked into it.  I know a rheumotologist wouldn't deal with that issue, but I think as a doctor who noticed it he should have either referred me to a neurologist who wasn't an idiot (like mine) or told me to see my idiot neuro and tell him about it.

I might have to leave the house today, which I am really not looking forward to.  I am nearly housebound now, and leaving the house usually means I have to recuperate for the next two or three pain filled days.  Ugh, I just realized that I haven't taken my meds yet and it's nearly one o'clock!  Even with the easy open tops it is very hard to open medicine bottles.  I have taken some Bayer Aspirin already, though.

My morning routine consists of reading a little, getting dressed, making some green tea, sitting down at the computer to check my email, opening a Bayer Aspirin Quick Release Crystals packet for the headache I got when I got up off the pillow, drinking a diet soda (when we have it), making more green tea, sometimes eating breakfast (depending if we have food in the house), taking my meds, brushing my hair, checking Sponsored Tweets (I've made $34 so far by tweeting), checking Twitter, checking on Facebook, then wishing I were back in bed and wondering why I bothered to get up this morning.

Right now I'm trying to do a educational pages on EDS and EDS related topics on this blog.  The one I started on was Chiari.  Tell me what you think of my page on Chiari.  It's still a work in progress, and I haven't really started on any of the other pages yet.  The order I was putting the pages in got all messed up, so don't pay attention to the strange order!

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