Game Rules

I got a ton of these, and if they don’t make you laugh, you need to go have your funny bone x-rayed.

Hello dear reader.

I had three good days in a row! That’s something to celebrate for sure!

Today is the fourth day in a row I’ve been in too much pain to function. I’m trying very hard to focus on the three good days I had and remind myself that I will have more. I just have to get through this stretch. It’s amazing to me how difficult that is to see when my entire body hurts like this. Right now hope feels like a fool’s game. But you know what? I’m going to play it anyway.

Here are the rules. First, and most important, remember that the pain is not who I am. It’s something I have to deal with. Second, my memory may be all kinds of screwed up, but I have wonderful memories that are still there. Third, I have a lot more amazing memories to make.

There’s the rules, now let’s get to the game. I’m really excited that I’m going to see my daughter in 18 days, 18 hours, and 40 minu.tes. I have a countdown timer on my phone. That translates into I’m leaving at 9 AM on the 28th. It’s a 12 hour drive, but I’m going to split it into two days. The plan is to drive 7-8 hours on Thursday (depending on how I do) and get a room for the night wherever that ends up. I’m going to sleep in as late as possible Friday morning and be back on the road around noon. I’ll only have 4-5 hours of driving, and will get to her house right after she gets off work. I’ll be there all day Saturday, Sunday, and Monday. I’ll leave Tuesday morning and do the same thing in reverse. I’ll get home on Wednesday (the fourth of July) in the early afternoon and will go watch the fireworks with Tim that evening. Thursday and Friday of that week are scheduled for recuperation. So that’s the plan, and definitely an amazing memory.

There’s rule number three. Yes, I do know I’m going backwards, but nothing said I had to do them in order ;-). Let’s think about a wonderful memory I already have. There are tons to choose from! Here’s one I think you’ll like. When my youngest daughter had been going to kindergarten for about two weeks she came home very upset one day. I, of course, asked her what was wrong. She said, “Mommy, we have to start eating liver!” I hate liver, don’t eat it and won’t cook it. So I told her no, it was okay, and we didn’t have to eat liver. She cried even harder when I told her this, and said she didn’t want the guards to get us. Of course, I asked, “What guards?” She looked at me like I was the stupidest person she’d ever seen and said, “The invisible ones!” I had to get to the bottom of this and asked her who had told her this. She said it was her teacher. Completely confused I told her to tell me exactly what her teacher had said. “She makes us say it every day….I pledge to the flag of America and to the Public it stands…one nation, under guard, invisible, with liver and just this for all.” I pulled her into a big hug, laughing so hard I couldn’t talk, then explained her mistake to her. I got a ton of these, and if they don’t make you laugh, you need to go have your funny bone x-rayed.

What was the other one? Oh yeah, the pain is not who I am. Telling you a good memory and something I’m looking forward to made the pain back off a little bit. That proves it isn’t who I am, doesn’t it?

I know I left you hanging with Home and Family part 1 and I will return to that next time. This just wasn’t the time for it.

What do you do when the pain tries to take over? Do you have memories you draw on? Are you looking forward to something? Please let me know in the comment box below. We can never have too many tools to use.

Thanks for helping me through this one.

Until next time…

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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…

Dancing with the Mop

In a strange way, the constant pain is a gift. Without it I wouldn’t notice how wonderful some days are.

Hello dear reader.

I hope you had a wonderful Easter and that today finds you well.

I’ve had almost five good days in a row! I think we may have finally gotten the right combination of meds going. I said almost five because today would have been the fifth, but I was up most of last night in pain.

Monday I got a letter from my insurance company (Medicare/Medicaid) saying they won’t cover the long-acting medication. I called my doctor’s office yesterday and they’re doing the whole “prior authorization” thing. Sometimes that works, sometimes it doesn’t. It’s about 50/50.

That letter really upset me. They do this to me a lot and normally it’s not a huge deal. If they won’t approve it we’ll use something else. I just want something that will keep the pain down enough that I can get out of bed.

I had honestly forgotten what it was to feel good. Friday I was dancing with the mop. I haven’t done that in… I can’t even remember the last time. I felt like me, a me I thought had been destroyed by my illnesses.

Okay, so I was in the kitchen wearing jeans and a t-shirt with my back brace on, and I look about 100 years old, but this is how it felt! Now that I’ve discovered it’s not completely gone, I don’t want them to take it away.

Enough about that. I’ll keep you posted on what happens. Now let’s move on.

I really want to focus on the (almost) five days of feeling good. I made it a point to be completely present and aware. That’s the point. We (people who live with chronic pain) enjoy the good days to the max when we get them. Feeling good and having energy is something healthy people take for granted. We don’t. It’s like people who’ve never seen darkness don’t really appreciate the light. People who’ve never been lonely don’t get excited about having a friend. I try to enjoy the good days 10x more than I hate the bad ones. I hang on to them for dear life during the dark days.

In a strange way, the constant pain is a gift. Without it I wouldn’t notice how wonderful some days are. I’d just sleepwalk through them. How do I know? Because that’s how it used to be for me.

click here for a song that fits this.

What’s a good day for you? How do you celebrate them?

Until next time…

Easter

Hello dear reader and happy Easter to you.

I don’t talk much in here about my spiritual beliefs. There are two reasons for that. The first is that I believe with all my heart that everyone’s beliefs are precious and have value. I don’t have the right to tell anyone what their spiritual beliefs should be. Secondly, my spirituality is always changing, growing, and sometimes waning. I’m still figuring some of it out.

That being said, I’ve always felt that Easter is a time of renewal, a new beginning. It’s a time to let go of the past, a time of forgiveness both for me and by me.

Whether you believe the traditional celebration of Easter, Jesus rising from the dead, or not, it’s still a time for celebration. It marks the end of the long, dark winter and the beginning of spring. It’s the time of new growth. Trees begin to bud, grass turns green, and flowers shyly poke their heads toward the sun.

We bought our house in the spring and soon noticed a tulip growing at the edge of the yard. It was off by itself, a single, beautiful, red flower. The next spring it bloomed with two flowers, which it’s done ever since. That tulip has always made me think of Easter. It spends a long time in the cold, dark ground, but manages to emerge full of beauty and color no matter how harsh the winter has been. It’s a rebirth, like Easter is.

There are times when I’m down for weeks, even months at a time. Depression sets in and tells me it will never end. Easter reminds me that no matter how long, dark, and hard that time is, eventually it will end.

I felt better yesterday than I have in a very long time. I had an excellent day. The pain was low and I had energy. I felt like I was me, rather than the pain which takes me over. I danced and celebrated (the dogs thought I had lost my mind). Easter came a day early for me.

The point? No matter how long, dark, and brutal the winter, Easter will come. Celebrate it when it does.

Until next time…

Strength

I believe that if you’re looking for strong people you should look for the people who see the worst of it and love you anyway.

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Hello dear reader.
I hear a lot about what a strong person I am. You have a genetic disorder? You are so strong! You’ve had five surgeries on your head? Well you look wonderful! I don’t know how anyone deals with constant pain. You are so strong! How does that make me strong?
If I have a day or two that I get really emotional and cry at the drop of a hat, is that weakness? If I have to cancel on something I promised to do or say “No” to something I really want to do because the pain won’t let me do it, does that make me weak? What if I turn off my phone and escape into a book because if I have to talk to one more doctor about one more new thing that the Chiari has caused I will scream? Does that mean I’m weak?
Personally, I don’t think any of that has anything to do with strength or weakness. I deal with the pain and all the rest of the crap because I don’t have any choice. If you know of another option, I’d dearly love to hear it! I get emotional and cry because I don’t have a choice. I hide in a book as a survival mechanism, so I can spend some time not crying. I turn off the phone to keep from losing what little bit of sanity I have left. That’s not strength or weakness. It’s survival.
I’m no stronger and no weaker than the next person. If you found yourself in the same situation that I’m in (God forbid!) you would do whatever you had to do to get through a day. You would search for anything positive you could grab hold of. You would try your best to enjoy the good days at least 10x more than you hate the bad ones. Mostly, you would handle it in whatever way works best for you.
One last thing….I believe that if you’re looking for strong people you should look for the people who see the worst of it and love you anyway. They watch someone they love going through hell and can’t fix it. They hold your hand and let you cry and keep trying to find a way to make it better. What makes them so strong? They don’t have to go through it.
I don’t have a choice about what I have to deal with, but my husband does. He still comes home to me every day, checks on me if I’m in bed too long, helplessly watches when I’m in horrible pain, and makes me laugh EVERY day. He’s the strong one, not me. Thank you Tim.
Until next time…

My new blog

Hi everyone! I decided I wanted to start writing a blog, but at first I was at a complete loss as to what I would have to say that anyone would find interesting.  I’m an ordinary person who lives a pretty ordinary life.  What do I know?

I know from personal experience about child abuse, domestic violence, chronic illness, depression, and love being conditional.  I also know from personal experience about the joys of raising children, finding out that love doesn’t have to be conditional, learning not to be a victim, and turning all the pain in my life into tools to help others.  I know about doing more than just surviving, but thriving.  

This blog is a journey I hope you’ll travel with me.  We’ll be going into some hard and ugly places on our way to life and hope.

Until tomorrow—