Memorial in Washington

This whole situation makes me angry because people like me, and many of you I’m certain, are being treated like we’re doing something horrible by using pain meds for what they were intended to be used for.

Hello dear reader.

The purpose of this blog is to try to find ways to enjoy life as much as possible while dealing with chronic illness/pain. Recently, however, I’m fighting for any quality of life.

I’m talking about our government’s decision to end opioid use. I’ve written before about the difference between use and abuse.

I read an article on Medium about the “Prescribed to Death” memorial being put up in Washington. Here’s the link if you’re interested:

https://themighty.com/2018/03/prescribed-to-death-opioid-memorial-white-house-washington-dc/?utm_source=newsletter_digest&utm_medium=email&utm_campaign=newsletter_digest_2018-03-29

I have to say in all honesty, this article infuriated me. This was my response:
I am so sorry for people who have lost someone to a drug overdose. That being said, I think this “memorial” is one of the worst ideas I’ve heard.
I live with chronic, debilitating pain constantly. Without the opiods I’m prescribed I would be dead. Period. I take the minimum amount of medication I can and still function. I don’t abuse my medication.
I went so far as to have electrodes implanted in my head (TENS unit). I’ve had my nerves burned. The list goes on and on. Nothing has worked. So I rely on pain meds to get out of bed in the morning, be as functional as possible throughout the day, and be able to sleep at night. I’m one of the majority of people who take opiods. The ones who don’t have a choice, who are responsible and careful with them, the ones who are being threatened with a death sentence by the government.
So put up your memorial if it makes you feel better. And start digging graves for the people like me.

Here’s an example of how insane this situation is becoming…I’m always very careful to read the information sheets when I start on a new medication. I want to be aware of potential side effects and interaction issues. I was put on a different pain medication last week. No matter how responsibly you take them, your body will build up a tolerance over time and they will no longer work. After spending 6 weeks in bed because I was in too much pain to move, my doctor and I decided I had reached that point. I was shocked when I read the information sheet on this new medication. There was nothing about side effects. There were no instructions about things like whether it needed to be taken with food. There were two pages of small print as usual, but the only information was about how addictive opiods can be, how dangerous they can be, how if you took them while pregnant 😯 the baby would be born addicted, and on and on. I had to look the medication up online to find out potential side effects and instructions. Does anyone realize how dangerous that is, to not know which side effects are normal and which are life threatening?

This whole situation makes me angry because people like me, and many of you I’m certain, are being treated like we’re doing something horrible by using pain meds for what they were intended to be used for. It terrifies me because I feel like my quality of life is being threatened… actually, my life itself. Nobody can be expected to live in constant agony, unable to function at all. Suicide rates are going to jump drastically if our government succeeds in making narcotics, opiods, opiates, etc. impossible to get.

Normally I would apologize for going on a rant, but not this time.

What do you think about this issue?
How do you feel about it?
I’d really like some feedback.

Until next time…

Taking a chance

Hello dear reader,

I’m writing this on my way to my doctor’s appointment in Golden.  Tim’s driving, so no need to worry.  😉   We’re going to try a temporary nerve block today.  Pain blocking medications will be injected into my head where there are a series of nerves.  This should temporarily eliminate at least a large amount of the constant pain in my head.  If it works they’ll do it again in 2 weeks.  If the second time also has the desired result then I’ll have a procedure to have it done permanently. 

I have to admit that I’m nervous.  We tried this before (three years ago) and it failed miserably.  I spent three days in excruciating pain.  So why am I doing it again?  That’s a legitimate question.  Nerves grow.  I’ll bet you didn’t know that.  They grow very slowly, but they do grow.   That’s why it may work this time.

The chance of it working is worth the risk.  I can’t express how much different my life would be if the pain were even just lowered.  The days that I hurt too much to function would be the exception, rather than the majority.   It would improve the quality of my life exponentially.

One week from today I’ll talk with the doctor about what showed up on the MRI.  Even if this procedure today is successful, there are still several other symptoms of the Chiari which need to be dealt with.

                                              …………………………………………………

Procedure is finished and I’m on my way home.  They did three nerves… different from the one they did before.  I think it may actually be working.  The bottom of my head (where the headaches usually start, at the base of my skull) is numb.  It feels very strange.  The top part still hurts like hell (I’ve had a pretty major headache since Tuesday evening), but the bottom doesn’t.  I have to keep a “pain diary” for the next five hours.

The other strange thing is that I feel woozy…dizzy and a little bit sick to my stomach.  That’s strange because they injected directly into the three nerves, sort of like the dentist deadens only the place where the tooth they’re working on is. 

I’ll let you know how it all turns out.

Until next time…