>> Sunday, February 27, 2011
So...Monday is Rare Disease Day. Some new readers may not know that I have a little known disease called Intracranial Hypertension.
This is taken right from my friend Kerry who has this disease in a major way, "Intracranial Hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. Imagine, if you will, your skull filling up with CSF and "squishing" your brain...that's what IH does. As it squishes your brain (and the brain does not like to be squished) it does nasty things in response."
IH causes debilitating headaches for me (Laury) and extreme dizziness. It took years to get a diagnosis. FINALLY, after a very long time and 2 shunts, I have one that is working amazingly well along with a combination of medications. It's placed in my foramen magnum (that hole in the picture is where the spine comes up into your head - my shunt is in there somehow.) I have tubes that run from there down my neck and around into my pleural cavity (lungs) where the excess spinal fluid drains. Now you know way more than you ever wanted to, right?
There are lots of diseases out there that we don't know about; not until you happen to run across one in your body or the body of your child or spouse. It's hard finding a doctor to even know what's wrong and then finding a doctor to help you, preferably one that is close.
Okay...now I want to spread some good news. I've been waiting out of fear but now's the time. I've been feeling really really good! I went back to the pain clinic to get help about three weeks ago. I left there when they couldn't do anything for me six years ago. That was when the headaches took over like crazy. Dr. Vallajo has me on some medicines that are working wonders and he gave me cortisone in my back last week.
I'm up and around now! My house is getting cleaner and more organized. I'm feeling better about myself. I'm laughing more. Enjoying life. It's great! I'm living again. And now that I am living again, I can see how much I wasn't.
We are in Jeremiah right now in our B90X and I am loving it. The words there are speaking to me in major ways. Jeremiah has a hard job. He has to tell the Israelites that they are in for it by God because they have disobeyed way too long. They aren't liking the message and I left poor Jeremiah locked in prison tonight. The good news is that after 70 years, God has promised to come back for them. The punishment will be over. In Jeremiah 31:13 from The Message it says,
"I'll convert their weeping into laughter, lavishing comfort, invading their grief with joy."
That's what I feel like has happened to me. I've left a dark place and now I've been lavished with laughter and joy. Okay, so a reality check. I do have a chronic disease. Things could change, but I am walking in faith. I am enjoying what I have right now.
Each step I take, I want it to glorify my God - whether it be through the storms, between the storms, or after. Just like I told a young friend this week, "It is what it is." And God IS. And that makes me SMILE. I've been smiling lots lately.
And in 25 days, my very best friend who knows me inside and out but loves me anyway, will be here, and we will be able to run around like teenagers and have loads of fun. God is so very good.