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

Thursday, October 18, 2012

Foot pain again and again

Between hypermobile feet, piezogenic papules, blood pooling in my feet from POTS, and toes that are subluxing constantly (and sometimes dislocating), my feet have been in extreme pain.  My feet always hurt and it hurts to touch the bottom of them.  However, this pain is incredible, and it hurts to lie down, sit, and especially stand.  I wear socks to soften touch against my feet.  It is hard to never have the bottom of my feet touched at all, especially when I have the weird habit of playing with my toes when I'm nervous.  I know that's a weird habit.

It's another rainy day, too, and it's playing mean with all my joints.  Ow.  I hurt so bad last night I was on Pinterest for awhile, then I couldn't even do that, and had to watch TV online the rest of the night.  I'm really into the Investigation Discovery shows on Netflix, but I can't watch too many of them in a row without getting a bit depressed.  My favorite show is probably Life After People, but I've seen them all.  They are so interesting, though, that I can rewatch them again in a few months.

I need to clean off the desk, it's really messed up.  However, on these yucky, rainy days it really hurts to clean, even if I sat down.  I still want that dang desk cleaned, though!

Ow! 

Monday, October 8, 2012

The real reason doctors become doctors--MONEY


I live in a rural area and have traveled all over my state to see doctors.  As you probably know if you read my blogs (and if you don't, welcome to my blog!) I live in poverty and rely on Social Security Disability.  They pay very little, and we barely have enough to make ends meet.  It takes months of saving to travel for a doctor's appointment.  None of the doctor's I've seen want to help with my pain, they all pretty much say to just live with it.  I have never, ever asked for pain pills.  I always tell my doctors pain medication will be a last resort and I want to try to manage my pain in every other way possible first.  

Right now I am almost completely housebound from pain, and can't even make it to my doctor appointments over half the time because I'm in too much pain to even walk to the car. I've already had a doctor drop me because of that, and I totally understand their point of view on it, if a patient keeps canceling, what are they supposed to do? 

 I cry every single day from the pain, and I'm no stranger to passing out from it, or crying myself to sleep from pain. Or, of course, the opposite, where I can't sleep for days from the pain. I was disabled before and on disability for my bipolar, but now I find myself so much more disabled than ever before, when you add the EDS, POTS, and fibro to mix with the bipolar. I've been on a walker since I was 29 because of the pain when trying to walk. 

Doctors don't care about their patients.  There isn't a solution, because a doctor would rather you are crippled, i.e. they get to see you more often equals more money in their pocket (even though it doesn't turn out that way), than help you lead a normal life. Most doctors really don't care about their patients, they care about the reason they became doctors--money. They could give two shits about their patient's quality of life. I don't know how many times I've left a doctor's office crying and not even being able to hide it.  I would be past the point it was possible to hide it, I was in so much pain from the trip, and so stupidly hopeful they would help. Like I said, the days are gone when doctors cared about the quality of life of their patients. I'm sure some doctors still do, but most don't. 

Sorry, my view is very pessimistic, but it is my experience.


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