Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (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 (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Wednesday, May 18, 2011


This week two EDSers lost the fight to Ehlers-Danlos Syndrome.  For those of you who are not familiar with EDS, V-EDS (the Vascular type) is the deadly type of EDS.  Kim Jessup and Zac Kleiner were lost because of this horrible illness.  I did not know either of them, but when I can I will make a donation to an EDS charity in honor of them.  Please make a donation in their honor to a charity that is doing research to cure EDS. Ehlers-Danlos Syndrome Network CARES, Inc is doing their second research project to find a way to cure V-EDS.  I want to thank my readers in advance for any donations they are able to make to the Ehlers-Danlos Syndrome Network CARES, Inc.

I have the cardiologist appointment this Friday.  We should have enough gas money to get there if it doesn't rain and my BIL gets to mow some lawns.  If it rains then he won't get to mow lawns and I won't be able to make it to my cardiologist appointment.  I can't open my jewelery making kit because we may need to return it to have the gas money to get there.  We are lucky, though, that I have it, it is unopened, and if push comes to shove we can take it back.  Each day we eek by financially.  We are getting a little better, though, I think.  I made $12 on Sponsored Tweets and transferred it to my PayPal.  There is a $2 fee if I transfer it before I reach $50.  So we had $10, which got cat litter and supper.  Thank goodness for Sponsored Tweets!  I've made $83.64 (cash, to my PayPal) since I started ST.

By the way, if you are interested in Sponsored Tweets and are wondering what it is, it's a website that you write advertisement tweets on and then ST tweets it out.  For every click someone makes, you get paid a preset amount of money. If you are interested, please use my link, http://spn.tw/r2rph.

This is a screenshot of my Sponsored Tweets page that shows how much I've earned


Today I've been in and out of bed.  It's flare day #2, which was not as bad as yesterday.  Yesterday I got to a 10/10 on the pain scale and I blacked out, coming in and out of consciousness.  Days like that are really, really hard.  My home health aide had come over yesterday and together we cleaned the living room.  I wasn't supposed to do any of it on my own, but if I 1) wanted it done and 2) wanted it done competently I had to do it. After she left my pain levels when from a 7 to a 10 in a matter of minutes.  Today I've spent half the day at the desk and half the day in bed.  As soon as I hit post I'm turning off the computer and going back to bed.  I'm so weak and fatigued, plus in so much pain, that my legs shake when I walk.  I have to use a cane indoors, which is something I usually don't have to do.  Well, I'm going to bed now.  

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