My Journey With:

Ehlers-Danlos Syndrome Hypermobility Type (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Complex Partial Epilepsy ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ 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) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Sunday, June 24, 2012

Sometimes it really gets to me

I am in so much freaking pain today.  This is my second day without Celebrex because I don't have the money to pick it up at the pharmacy, even though my co-pay is only a $1.50.  We have two sets of sheets we use, with one set of really old, don't fit right, lowest thread count possible, super thin, sheets, that are also see through, for "backup."  One of our nice sets of sheets now has a big rip down the middle.  So now I have to figure out whether I want to patch the sheet, or try to sew it.  I don't know how to sew, really, and don't have any sewing thread.  I think I do have a sewing needle somewhere, though.  I thought since the edges of the rip are frayed I might just do a satin stitch, which is an embroidery stitch I can do.  I think it would be better than patching it, though if my "sewing skills" were able to fix it.  Of course, if they aren't able to fix it, I can always patch it then.  I know we have an iron somewhere in the garage, or at least I think we do.  I think we don't have our ironing board anymore, but we could always use the part of the table that isn't broken.  The good news is that we have plenty of food in our shelves and fridge.

I obviously won't be able to get all these things, but my list of things I'd like to get next month are: collars for the cats, flea drops for the cats (we will definitely get those), books (I doubt I'll get that), an EDS ID card, business card paper to make a dysautonomia/POTS info card for my wallet (I doubt I'll get that one, either), new wrist braces, a walker pouch (another that I doubt I'll be able to get), soft knee braces for support (no way I'll be able to get that), a wrist blood pressure monitor (I really need that, but it's unlikely I will be able to get it), and extra links and a new clasp for my medical ID bracelet (that one is very important).  Sometimes I get so tied of living in poverty.  I'm usually not a jealous person, but I was on tumblr today and saw a girl complain about only having a $300 clothes budget for next month, and I had to force myself not to write a snarky comment about how nice it would be to have that much money.  I'm getting bitter, and that isn't the person I want to be.  I want to a positive person.  I am thankful for things that seem little to others that are a big deal to us...like food and toilet paper.  Do you know how it feels to know you have a ask a charity for toilet paper because you don't have any?  And then they give you only one roll, but it's another week until we get paid?  I don't want to be a bitter person.  I never saw myself at 31 years old on a walker, unable to drive, unable to take a shower alone in the house because of fall risks, not knowing if I can eat day to day, patching sheets, no new shoes in 4 years, no new clothes in 2 years, having an 18 year old car, homebound, not a mommy yet, ruined credit that only a few years ago was perfect, afraid to answer the phone because of bill collectors, and with more illnesses than I can remember in two minutes.

Sometimes being disabled and living in poverty just really get to me, more so than other days.  This is one of those days.

Front of my medical alert says:
AMY ██████
SEE WALLET CARDS
SEIZURES
POSTURAL ORTHOSTATIC
TACHYCARDIA SYNDROME


Back of my medical alert says:
EHLERS-DANLOS SYNDROME
BIPOLAR & PTSD
NO PHENERGAN OR SAVELLA
DOB ██████
www.IdentifyYourself.com


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