Hey guys…It’s taken me a month to write this in bits and pieces.

I want to apologize for not updating in a while. Many of you have been very kind, checking in, sending things, wanting to know the deal. I just couldn’t bring myself to share more bad news. Things have gotten worse since my last email or voice note.

I miss communicating with people terribly. Pain in my hands and jaw still prohibit all manner of these things. Recent testing left me with a bruised tailbone so even sitting or lying down have become agonizing. Doctors believe I’m stuck with the tailbone pain, just like the nerve and jaw trouble. My ankles and feet are killing (lots of shifting to spare the tailbone), and I’m losing my ability to walk. I don’t want to renounce the last vesitges of independence and be wheelchair bound (I already am for anything more than a very short distance), but it’s heading that way. Once my body experiences a small injury/upset, the feedback loops of pain get stuck and worsen. I now spend my days writhing around with heating pads and ice packs trying to find some position to rest…and failing.

So, yeah. I can no longer really stand, walk, sit, lie down, speak, type, text, read, chew, make or watch things.

I find myself terribly nostalgic for days of excruciating pain; even when I was housebound or bedridden but able to do some of the above.

Next, it gets worse. You’ve been warned.

While healing from my surgery, I’ve still been experiencing bad abdominal pain. Testing revealed that some of my intestine has fallen into my pelvis where it is not supposed to be. As a result, it is squished and kinking up in a few places, causing great pain. My gastroenterologist wanted to get me back into surgery within the month, for fear that I would not be able to gain weight and strength while this problem persisted. However, the surgeon to whom I was referred did not want to operate on me in this weakened state. She is not even sure exactly what procedure I will need, but if she did it right now it would have to be a major open surgery, due to fresh scar tissue blocking the view of laparoscopic tools if we tried to go that route. She and I agree that it would be very difficult for me to survive this. One thing is certain: I will need another operation at some point, and it’s going to be bad.

Every bout of crippling abdominal pain has me afraid that this is becoming an emergency and I’ll have to pile multiple life threatening states on top of each other. BUT, we are putting off surgery as long as possible.

Over 60 practitioners have “never seen a pain signal system gone so horribly awry.” In light of that, the sensations I experience after these operations completely defy description. I can’t even say “imagine the worst thing you’ve ever felt…” because it SO surpasses human comprehension. After surgery I spent a week and a half in the ICU filled with morphine, ketamine, and muscle relaxers. Yet due to pain I was still shaking, in shock, often in convulsions with a heart rate that would not go below 110 for almost 10 days. Truthfully, I didn’t want to survive. I wanted the machines turned off. I wanted to be let go or gently euthanized. I had to coax myself through every single second, and most of the time the only thing that saved me was knowing that my loved ones would be upset if I didn’t pull through.
And THAT nightmare is what I’m attempting to get well enough for all over again. Try not to be jealous. 😉

In the meantime, there is no medication to help. I can’t take anti-inflammatories due to the repeated gut perforation risk, am allergic to narcotic pain killers and have tried nearly everything in the nerve pain med arsenal. I’ve exhausted well over 100 pharmaceutical and natural rememdies.

I am grateful for the prayers and good energy you guys have sent. I don’t pray to any traditional/personal God but I do “pray” by concentrating energy on certain things. If you’re receiving this email, I send good energy to you each day.

For those of you who have asked what to pray for on my behalf…

I ask for the chance to survive so I can be of use and service to my fellow human beings…to embrace a life of art, science, learning, creating, healing…The chance to be a great friend again and foster the dynamic, compassionate, synergistic personal connections that are so dear to me…to finish my post grad education and use my years of hard earned experience to become an empathetic practitioner/educator/advocate for those struggling with medical issues. I want to grow old knowing I have made a difference. I want to…grow old.

I ask that the doctors be enlightened with the necessary information to understand and reverse this condition. Human physiology is a puzzle and I do believe that somebody in the world can figure out the missing pieces of mine. I pray for my turn to solve puzzles for others.

I’ve proven I can cheat death on two major occasions already. I don’t understand why death keeps requesting a rematch.

I am going to want to give up. Often.

But there are so many stories in me that remain untold. Too many things to do, see, learn, give and create. And too many amazing people who haven’t given up on me.

Sadly, I’m fairly rapidly being snuffed out of existence by this mystery pain disease (kind of like The Nothing from The Neverending Story is sweeping over my body, crushing it bit by bit). I’ve avoided using negative language like that until now (being a mind-body med geek and all), and I hate to give in. But I feel like I’m in a mad rush against the clock as it gets harder and harder to make it to appointments to try for some sort of diagnosis. We’re trying SO hard. I wish I could convey some sense of hope as I have in past times of trouble. But no one has been able to halt the damage and I’m finally having trouble believing it’s possible. (now I’m making the rounds through Cedars-Sinai doctors). Please cross your fingers. Maybe there is still hope.

It kills me that I’m missing out on your daily lives…milestones and mundane. My body won’t let me be ME (which means being there for YOU). But my heart still aches to do so and my mind is filled with gestures I wish I could make. Please know that.

I MISS AND LOVE YOU GUYS. As always, the best way to help…especially since I’m unable to have visitors (and do not check facebook for a number of reasons)…is to write/text/voicemail and share your lives with me (I know it’s hard to talk about yourself to someone in my situation…but I want to hear everything!).

Love,

Dana