Each of our experiences can help someone else.
Hello dear reader.
With as many diagnosis as I have, it’s often difficult to know which illness is causing what problem. For example, let’s look at the back pain I’m dealing with right now. It’s located in the top half of my back. I’ve had to be on oxygen for several days. When I take it off I drop into the high 60’s or low 70’s. That’s a COPD flare up or even pneumonia, either of which could be causing my back pain. It could also be the scoliosis causing it, or all the driving I did last week.
Scoliosis, COPD, fibromyalgia, and Chiari can all increase my headache. COPD and fibromyalgia can cause my extreme exhaustion, or it could simply be a result of pushing myself so hard last week.
Why does it even matter? If the back pain is coming from my lungs, soaking in a hot, Epson salt bath can make it worse. Humidity makes it harder to breathe. If something else is causing it, a hot bath can help a lot. So how do I know what to do?
I’ve learned to be creative. In this case, I’m sitting on a heating pad. If that helps I’ll know it’s not my lungs and will go take a bath. If it doesn’t I’ll know it’s from my lungs.
I’m certain many of you face similar dilemmas. What are some of the ways you’ve come up with to handle them?
I think it’s wonderful when we can learn from each other. Each of our experiences can help someone else. Isn’t that what it’s all about? I’m looking forward to some of your ideas.
Until next time…
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…