Saturday, November 23, 2013

OT- Banned4Life Project

The Banned4Life Project

Even the Red Cross doesn't believe that a lifetime ban on blood donation for gay men is warranted, but the FDA refuses to look at the facts.

My best friend from middle school is gay and HIV+. He obviously should be banned from giving blood until we find a cure, but not every gay man is at high risk of HIV+, it's all about behavior and a more complex and accurate set of questions should determine deferral length or ban. Monogamous homosexual men are considered by the FDA to be a higher risk than heterosexual men who regularly engages in unprotected sex with multiple prostitutes.

The risks you take and the threat that you pose should determine your ability to donate DESPERATELY needed blood.

As someone who might need blood one day, it scares me that stereotypes will determine the quality of blood that I get, instead of the actual risk.

The petition:
Banned for Life- Causes


Tuesday, October 15, 2013

Spouses (and all significant others)

I came across this photo on Facebook and it made me think of everything that our spouses and significant others go through.

As both an IP (Intractable Pain) patient and the spouse of an IP patient, I feel the stress of knowing everything that I'm putting my wife through. Just last night, my wife had to go to the ER (we got stuck in the hallway, again, so no TV for distraction and no outlet for my phone to watch something on it and no quiet or peace). I spent almost eight hours pacing back and forth. They didn't find the problem, the nurse was an opiophobic bitch, the urine test took well over two hours, anextra blanket took an hour, a ginger ale took 90 minutes, and after two hours and seven requests we were told that they had just run out of sandwiches. I couldn't do a damn thing too keep her comfortable (pain, thirst, or food).

Anyway, my point is that it isn't easy to be married to a CP/IP patient. So, I'd like to thank everyone who supports CP/IP suffers.

I'd also like to dedicate the week from 10/14-10/20 to them as the unofficial Intractable Pain Spouses Appreciation Week.

Happy IPSA week!


Friday, October 11, 2013


My wife and I had our quarterly follow-up appointment (med check) on Wednesday night. We were finally able to tell him that the pediatric geneticist diagnosed her with EDS, which took him less than a minute to diagnose (10 minutes of confirmation testing to be sure). He told first asked us if that was what we thought it was when we asked for the referral (it was). He seemed pretty shocked, he kept stopping and saying things like "EDS, really?" and " I don't think I've every had a patient with EDS before". He seemed reasonably happy knowing what he's treating. He FINALLY switched her from the completely ineffective oxycodone 30mg pills to oxymorphone 10mg pills, but we're waiting for it to be ordered and the prior authorization to be approved.

He was very happy to hear that the severe stretch marks that everyone thought were from the prednisone were actually from the EDS. The prednisone wasn't good, but the EDS did most of the damage. He was also happy to hear that over a dozen of her diagnoses are linked to EDS.

There's nothing like knowing what has been destroying your body, life, and social life for over half a decade and causing medical and pain problems for all of your life.


Tuesday, October 8, 2013


This is a joint blog by myself (Melissa), and my husband (Steve). I was recently diagnosed with EDS (Ehlers-Danlos Syndrome). EDS is a painful genetic disorder with no cure and no treatment. EDS symptoms are treated, but not the underlying cause. If you want details about EDS, go to the EDS wikipedia page (surprisingly great resource), there's no reason for us to regurgitate those easily available facts.

My husband has his own blog, IP kills, that he started in early September 2013. His blog focuses on intractable pain and the negative effects on your social life, emotional wellbeing, and family. He suffers from intractable pain due to an inoperable brainstem tumor. He also suffers from several other conditions, but this blog isn't about him, or at least not his health, so I'll leave it at that for now.

We both recommend that anyone dealing with a painful condition read Dr. Forest Tennant's Intractable Pain Patients' Handbook for Survival.

We haven't setup an email address for this blog get, so (for now) any feedback can be sent to:

Mel (& Steve)