About

I am a 26-year-old with the body of an 86-year-old. I was born with a genetic connective tissue disorder called Ehlers-Danlos syndrome (EDS), which causes me to have a ridiculous number of severe medical problems. It is believed that most, if not all, of my medical problems are due to being repeatedly exposed to a neurotoxic pesticide while still in the womb.

Because of said medical problems, I am practically a professional patient. I deal with doctors, insurance companies, pharmacies, and so-called “medical professionals” constantly.

Outside of being a professional patient, I am just a regular person. I was born in New York, but am currently living in the south. No matter how hard I try to hide it, they can tell I’m from New York! It’s a southern superpower, I swear! I have a beautiful Siamese cat named Venus. My mom is my main caregiver, and I live beneath her and my brother, along with their cat, Sienna, and parakeet, Victor. I’m a less-than-part-time college student, attempting to earn my degree in biology. Listening to music is one of my passions; I especially love Deep Forest and world music. I also love to draw, read, graphic and web design, write, learn, teach, cuddle with my kitties, spend time with my family, and sleep.

I started this blog to share my experiences while connecting with other people who are experiencing similar circumstances. Thanks for stopping by and getting to know me through my words. I hope you like what you see.

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2 responses to “About

  1. kim

    Hi Ioma:
    I am a native Tennessean who ran across your website. I too am a chronic pain/professional patient who is officially a lucky TNCare member as of July 2010. My pain doc does not accept TnCare nor will help me with prior authorizations for my pain meds (i had good insurance until 2 mos. ago). I live in Franklin-do you know of a good pain doc who accepts TnCare? Is there such a thing-LOL?

  2. Hi Kim,

    Thank you for visiting my site. I’ve moved it to http://www.chocolateandmorphine.net, by the way, but I’ll still answer your question here. 🙂

    Oh wow, it looks like, according to Google Maps, Franklin is almost a 5-hour drive away from where my awesome pain management doctor is. The cool thing is, though, once you get stabilized on your meds, you’d only have to go once every 3 months. He is in Johnson City, and I’ll give you his info privately if you’re interested.

    Yes, there is such a thing as a good pain doctor. It can be very hard to find one, however. Especially on the crappiest insurance in the universe (Medicaid in general, because docs barely get paid to see us.). I’m glad you have insurance coverage at all, though. AmeriChoice has a significantly larger network of doctors, so if you’re not already on AmeriChoice, I suggest you switch as soon as you can. AmeriChoice has a search function on their website here: http://providerdirectory.uhcrivervalley.com/providerdirectory/ProviderSearch

    Try searching under the following specialties: Anesthesiology, Internal Med (more experienced than your typical family practice/GP would be), Neurology, Pain Management, Rheumatology, and anything that specifically relates to your problem.

    I don’t know how old you are, but it can be a bit harder the younger you are. I’m 26, and have been in pain management of some kind since I was 22. It has not been easy, but I’m in a good place, for now.

    I would seriously recommend finding all of the pain doctors within the area you are willing to travel, get their addresses, and write a sincere letter to them. This is how I found my great pain guy. Also, ask anyone and everyone who may have a name of a good doc for you, even if it’s a family doc/GP, and contact them. You never know who you’ll find, and I know a few people who have great GPs who manage their pain very well (none in TN, though, sorry).

    I wish I could be of more help with specific names of doctors, but like I said, I’m about 5 hours east of you.

    Do not give up. You deserve to have your pain treated, to be taken seriously, and to be treated with compassion. I know it’s hard, it’s very, very hard sometimes, but you can do this. You have to try to trust that God has a reason for everything. God would not have given you this burden if you didn’t have the strength to handle it.

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