Updated "About Me"

If anyone is interested, I've updated the "About Me" section


-----Updated Text-----
I apologize for not updating this part of my site for a while, but I've been fighting with the incompetent, ignorant, rude imbeciles who run CYS (Children & Youth Services) for over six months concerning my wife's and my need for prescription opioids. I've been told that they've never gone after people as hard as they've been going after us, that includes heroin addicts and crack whores. They routinely lie on court paperwork, leak confidential records, commit perjury, and they're constantly change their story & accusations. We've had to prove that we are ill enough to require opioids, but not too ill that we can't care for our daughter. Thankfully, our family doctor has not abandoned us. He knows how much these medications help us and he knows that our daughter is well taken care of. Thankfully, my state has never had a law allowing children to be taken from disabled parents and there are federal laws (i.e. Americans with Disabilities Act) that protect us, slightly. Unfortunately, we still have to prove that our medical conditions don't prevent us from caring for our daughter. Aside from our doctor, we have our almost useless lawyer who can't schedule a meeting, and a great subcontracted (not a CYS employee) parent educator who isn't afraid to tell the truth, even if it isn't popular and even if it contradicts her conclusions. We've also been complying with their ridiculous WEEKLY urine drug testing (costs taxpayers $100/test per person). I really wish that they'd switch to saliva testing, or better yet hair testing, which covers the last 3 months (more, if you're willing to pay for it) instead of the 2-3 days that UDT (urine drug testing) covers. I did the math once and found out that you could buy a VERY nice car with the money that they've spent harrassing us and violating our rights. Privacy is a thing of the past.

Wish me luck- PCP & IP

It's 9:40am and my wife has yet to sleep, and my sleep was highly fragmented thanks to her efforts to clean and organize a lot of our stuff. We're both going to be dragging when we go to my "next day" appointment later this afternoon. My pain has been out of control and, despite all of knowledge and self education, I have no idea how I'm going to convince my PCP that I'm in need of additional help.

While I both sympathize and empathize with the uncomfortable position that my PCP is in, I NEED him to help me until (unless) he van get me an intrathecal pump management physician, PM, and/or palliative care specialist.

I'm mainly asking for an increase and change in form of my clonidine (1mg pill 2/day --> clonidine patch 3mg/day), but he and I both know that my current dose of fentanyl patches has been inadequate for YEARS and he always gets uncomfortable whenever I mention poor pain control. He knows that I need to be back on low dose methadone and Actiq. My pain is getting worse and the dose of medication that's always been inadequate is extremely inadequate (even without the effects of tolerance).

Honestly, I'm extremely depressed and unsure of why I'm still fighting to live.

Sorry for the depressing post, I just needed to vent.

-Steve

I Complain

I have a habit of complaining, A LOT, but this blog is my story and although I'm a negative person from time to time, this blog is a story of survival. I've survived abuse, depression, Asperger's, my parents' divorce, the loss of so many loved ones, the loss of my youth to CP/IP, inoperable cancer, and the loss of my dreams.

I was on my way to becoming a doctor (my dream job). That was the hardest thing for me to overcome, but I found another way to help people. I belong to dozens of online support groups and give advice. It's the people from those groups who have been urging me to start a blog.

Steve

Update

My back is killing me, my legs are even worse. I wish that I could impart some wisdom, but days like today are for watching TV and waiting for them to pass.

I'd like to invite anyone and everyone who has any questions, or needs advice on handling their doctors.

A little more about me

I had an intrathecal morphine pump trial June 24-26, 2011. It was wildly successful, but the pain management office that works with my Neurosurgeon declined me as a patient because I was already taking a high opioids (which is necessary to qualify for the procedure and I was told that I couldn't even be on hydrocodone/acetaminophen if I wanted to be CONSIDERED as a patient), so they doesn't implant the pump. I still haven't found am office willing too implant one for several reasons
1) liability- my brainstem tumor will kill me by growing enough that it stops my breathing and/or heart, this will mimic opioid overdose
2) I am on a high dose of Duragesic (fentanyl) patches, but I could easily discontinue them with an intrathecal pump
3) my age,  I am 23 years old, I was 21 at the time.

-Steve

"The problem with the world is that the intelligent people are full of doubts while the stupid ones are full of confidence."
- Charles Bukowski

Posted from Blogger for Android

Welcome

Welcome to my blog. This blog is dedicated to everyone who's told me over the years that I should start one and to every chronic pain and intractable pain suffers, their friends and families, and the doctors who do their best to help us.

About Me- I have suffered from intractable pain since 2009. I have suffered from chronic pain since I slept in a crib. I have an inoperable brainstem tumor, specifically a DIPA/DIPG (Diffuse Intrinsic Pontine Astrocytoma/Glioma) that was found January 8, 2006 and diagnosed April 1, 2008. I also helped found the Central Pain Syndrome Foundation. After significant hesitation, I tried opioids. Once I reached "high" doses, my pain significantly improved,until the dose was reduced. I still take a somewhat high dose of Duragesic.

My wife also has intractable pain, so I've been a caregiver as well.

My daughter started kindergarten last week. She is staying with my father while we wait on housing assistance because we lost our home after my mother-in-law passed away and doesn't leave any money to cover the mortgage. We're staying with my wife's great aunt, but the house is not suitable for a child and her wellbeing is too important to even consider her living here.

I'd like to end my first post with a few reading suggestions

The Intractable Pain Patients' Handbook for Survival

Overcoming Opiophobia

High Dose Fentanyl for Cancer Pain

-Steve