Hope

I’ve gotten a chance to remember what I’m fighting for, why I keep hanging on when I it seems so pointless.

Hello dear reader.

I have really good news and I have bad news. Which should I talk about first? Let’s start with the good news.

In the last two weeks I’ve only had one day I was stuck in bed. It’s incredible! The pain is there, of course, but my doctor and I have finally found a combination of meds that keep it at a level I can push through. I feel younger, more energetic, and extremely happy.

Now the bad news. Medicaid and Medicare are taking me off these meds. I have just over two more weeks on them. They’ve even decided what I have to take instead. It’s something I’ve taken before and it didn’t work for me.

This isn’t necessarily all bad. There’s a possibility (a tiny one) that the stuff they want me to take could be effective. There’s also a chance that if I take the new stuff and it doesn’t help me, they may let me go back to what I’m taking now.

So that’s the situation. I’ve felt better in the last couple of weeks than I have in an extremely long time, and I have two more weeks to go before it’s taken away. I can’t begin to express how thankful I am for this time. I’ve spent many hours praying for just a break from the agony I’m usually in. My prayers were answered. I’ve gotten a chance to remember what I’m fighting for, why I keep hanging on when I it seems so pointless. I discovered that Lynnette is still in there. That may sound strange to some of you, but when I’ve been stuck in bed unable to move my head for weeks, and even months at a time, the pain and depression seem to be all that I am. The part that’s me gets buried so deeply that I can’t find it any more.

This brings me to something else I feel it’s important for me to address. During the periods I’ve existed in hell I’ve wanted badly to end it. I couldn’t see any way for the agony to stop besides death. I’ve spent a lot of time wishing for death and thinking about suicide. I’ve felt like I was already dead and just waiting for my body to catch up. I know a lot of people who deal with horrific pain constantly feel the same way. But the break I’ve had these last couple weeks has given me hope and that’s something I haven’t had in… I can’t remember how long. I’m telling you this because I want to give you hope as well. It’s possible! Things can change! If I had ended things then, I would never have had this experience. Even knowing it’s probably temporary, it’s totally worth it.

The biggest surprise of the last couple weeks has been discovering that I’m still here. The pain, isolation, depression and darkness didn’t destroy me after all.

Until next time…

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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…

Hot Coals

Hello dear reader.

My last couple of posts have been a bit different from what I usually write about, but they’ve been things I’m very passionate about…domestic violence and giving children a voice when they need one.  Today, however, will be a little calmer.  I promise.

I found a quote the other day that really stuck with me.

“Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else. You are the one who gets burned”
Buddha

I’ve believed for a long time now that holding on to anger and refusing to forgive, gives the person who wronged you power over you. It hurts you, not them. Buddha just says it better. No matter how it’s said, it’s a truth that a lot of people never grasp.

When I was a child, I wanted more than anything to be grown so my abusive mother and step-father would no longer have control over me. When I was 15, I simply could not deal with it any longer. I was literally losing my mind. So I left. The police found me after a week or so. They gave me a choice between going to Juvie or going home. I thought about it and decided, better the devil you know……right? So I went back. Nothing got better. Things actually got worse. So when I left again a few months later, I had a plan. The plan worked. Instead of sending the police after me, they told me that they would call the police on me if I showed up there. I was free! At least, I thought I was.

Many years went by while I hung on to hurt, anger, hatred, and guilt. Why guilt? Because I had left my four siblings in that hell hole. When I left, I planned to get them out as soon as I could. But I was living in an abandoned car out in a field. In Louisiana. In the summer. I knew I couldn’t take custody of them while I was living like that. It was four years later by the time I had a home of my own, not staying at someone else’s house, and a steady job. By then…..anyway, that’s where the guilt came from.

I went from bad relationship to bad relationship to worse relationship. I was angry, depressed, and felt like a victim. But I didn’t have a clue how to change things. I had gotten away. But I wasn’t FREE. My life still felt the same. I changed geography and who was abusing me, but other than that it was the same life. I’d reach a point where I simply could not deal with it any longer and I’d run, over and over again.

The first time I tried to commit suicide I was 10 years old. I knew that it was dangerous to take more Tylenol than it said to on the bottle, so I swallowed an entire bottle of Tylenol before I went to bed. I completely expected to die during the night. Boy was I mad when I woke up in the morning! That was the first of many attempts throughout my life. I simply could not deal with my life any longer and I tried to run.

It’s a funny thing about running. No matter how fast or how far you run, you are still there with all the pain and anger you try to escape. It took me more than 40 years to figure that out. But I still didn’t know how to change it. I couldn’t erase all that had happened to me. I had tried to forget, but that never worked. I had to let go of it. I didn’t know how to do that.

When I had my first surgery for the Chiari, I truly didn’t know if I would survive the surgery. I wasn’t scared of dying, but if I was going to, I needed to do it with a clean slate. I had to forgive so that I could be forgiven. It wasn’t about letting them off the hook, or in any way condoning what had been done. It was about me being able to die with a clear conscience. So I started calling people…my mother, my ex-husband….people who had hurt me the worst. I called and told them that I was sorry. I was sorry that I hadn’t been a better daughter. I was sorry that I hadn’t been a better wife. I was sorry that I hadn’t been a better person, a better sibling, friend, mother….so many things.

I was shocked at what happened. My pain and anger toward people went away as I apologized for my failures in the relationship. I was able to let go of my hurt. With every person I talked to, a little bit of light shined into places in my heart that had never been anything but dark. It was incredible! They didn’t have any more power over me. What they had done to me no longer controlled my life.

Let me be very clear about one thing here. Forgiving does not mean forgetting. I would never leave my daughters alone with my parents because I knew what could happen. I let go of the pain they had caused me. I didn’t become stupid. What I did was for me, not for them.

I did survive the surgery….obviously. But I had my clean conscious. My past no longer ruled my future. I’ve worked hard every day since then to try to be more forgiving. The things that happened to me are still a part of my life, but now I try to use them for good. I work with children who have been abused or neglected. I work with victims of domestic violence. I am very passionate about those things. But I am no longer a victim. I am a survivor.

That hot coal did a lot of damage to me while I tried to throw it. I still burn my fingertips from time to time when I reach to pick it back up. But now I’ve learned to drop it.

I truly hope that I (and Buddha) have given you something to think about today. Put something in comments at the bottom of this page and let me know. You are welcome to share as much or as little as you’d like. Please feel free to pass this on. It’s truly life changing.

Until next time…