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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New Name

Sometimes finding something to be thankful for can be difficult.

Hello dear reader.

I’ve been stuck in bed for the last 5 days and have had a lot of time to think. One of the things running through my head has been a new name for this blog. I’ve got it narrowed down to three.

This is where you come in. I need your help to make the final decision.

1. Finding Life Through Pain

2. Living when Life Seems Unliveable

3. Living vs only existing

Of course, if you have other ideas I’ll gladly throw them into the mix.

Now that we’ve got the business out of the way, I want to tell you about something new I want to try. I’m going to post something I’m thankful for at least once a week. I think it will help the positivity of this blog.

So today I’m very thankful for my incredible husband. Yesterday he came home with these flowers for me..

along with a super-sweet card. When I asked him what that was for he said, “Just because.” They’ve certainly brightened up the room and smell wonderful! He put a big smile on my face.

So, as you can see, being thankful for Tim is an easy one. Sometimes finding something to be thankful for can be difficult. Thank you Tim, for making it easy today.

I’m looking forward to hearing your thoughts on the new name.

Until next time…

PS. I just had another suggestion to add to the rest…

Chronic Pain WARRIOR.

Trying to live

So I’m not dying, but I’m not living either. I’m simply existing in a world of pain and exhaustion.

Hello dear reader.

It’s been quite a while since I posted on here. Much has happened and I’ve been trying to figure out how I feel about things before I post about them on here. Months have passed and my feelings are still all jumbled. I don’t see that changing in the near future.

So you, my friends, are going to get things the way they are…confusion and all. I’ve always been honest with you and that will never change.

Here’s a quick recap of where things stand: In February I got pneumonia, which set off a whole chain of events. I wasn’t getting better no matter how many antibiotics I took. While I was finally able to get the fever down, I was not able to get my oxygen levels up. After more pictures and blood tests, my primary care doctor found a spot on one of my lungs and was very concerned it might be cancer. Next stop was a pulmonologist. He looked at the pictures and told me it wasn’t cancer. It was COPD and I was terminal. I went through the nightmare of telling my family and friends that I was dying. That was a horrible experience. 

The pulmonologist ordered more tests to give me a better idea about how long we were looking at. Those tests had some unexpected results, so he sent me for more tests. These were on my heart because he thought I might have cardio-pulmonary edema.  After everything had been looked at, I was told that I have emphysema. I was not terminal.

This was very happy and exciting news for everyone….well, almost everyone. I had finally seen a light at the end of the tunnel. There was an end in sight to all of this pain I’ve dealt with for so long. Then the tunnel got dark again.

I knew I was supposed to be happy about my wonderful news. Everyone else was thrilled. However, nothing changed. I’m still in pain 24/7. I still have no energy at all. So I’m not dying, but I’m not living either. I’m simply existing in a world of pain and exhaustion.

I’ve been trying very hard to push through it all, to get up and get something done no matter how I feel. I have to start somewhere, right? But for every two days I’m productive I spend four in bed in too much pain to move. I sleep 20 out of 24 hours. It’s two steps forward and four steps back.

I don’t know where this is going to go. I do know that I’d like to bring you along on the journey if you’d like to come. 

Until next time…