Saturday, March 29, 2014

My Struggle...and Why I've been Gone





This is my personal story. I have had a migraine since January 27th, 2013. Yes, for you math wiz's out there that is 14 months and 2 days long, and nearly every day (I have had maybe 10 days in that time where my pain has been low) I live with lots of pain. This condition is called a Chronic Migraine. Now let me define what "living" is to someone with chronic migraines. I have to force my family to be constantly quiet. I live in my bedroom for the most part, I can't stand loud noises or light so the windows have been blacked out. I can stand dim light for some periods of time so that I can read a book, and with my super hearing sensitivity any TV that get's watched has to be on volume level #10 or less. But that's on a GOOD day. Since I can't stand noise or light, simple things like going out to eat become impossible, and if I try it on a good day I pay for it dearly later. Now I have given (natural) birth to my son and fractured and broken bones, so I know what pain is. I was in no way prepared for the constant feeling of a migraine for over a year. On a bad day it feels like there is a jackhammer inside my brain and it's desperately trying to split my skull and get free, this pain is so horrible and intense that even with 2 prescription ani-nausea meds I would still throw up uncontrollably at times and have to go to the emergency room for narcotics to kill the pain. On a good day it just feels like there is a knife stuck above my eyebrow that is slowly and excruciatingly twisting so that the pain radiates out from that point. What used to be an 8 for me on the pain-scale is now a 4 or a 5, after being subjected to pain for so long my tolerance has built against it-isn't the body amazing?

Now your probably wondering why doctors couldn't help me for over a year, yeah I was wondering the same thing! I went through no less that 30 different headache medicines, and my neurologist here at home sent me to every specialist conceivable, trying to rule out possible causes. I even tried a dozen different homeopathic remedies, along with seeing a chiropractor. Nothing helped.
Then in December I went to see a different specialist group in another state. We did this over Christmas break while visiting with family. They have been my first ray of hope. They have so far discovered the cause of my migraine, for me it's the Supra Orbital Nerve. Apparently there is no way to find out WHY it's out of control and causing me so much pain, but they are working on a treatment. Since December I have been traveling to this specialist every other month for diagnostic treatments. My insurance company is being a pain and making them jump through all these hoops before they will pay for the procedure call an oblation, which my doctor thinks will be effective for the nerve. The problem is, it costs thousands of dollars, and can only serve to stop the nerve from causing pain for 3 weeks-10 months. Now, a several thousand dollar procedure every 10 months is not that bad, but if it only lasts 3 weeks that would be a problem. So that's most likely why the insurance company is making my doctors jump through so many hoops. But what they don't realize is that while they are counting their pennies, I am "living" in pain.

At my last appointment my doctor decided to try ONE more medicine. He put me on a seizure medicine. I have been on it for 9 days now on the lowest dose (I'm on a titrate working up to a very high dose over 50 days) and so far it's been helping! I still feel the pain, and sometimes it still get's bad- but nowhere near as painful as I have experienced in the past. And even with the incredible sedative side effect this medicine has, I am able to be up and moving around, actually living a lot more than I used to.

I still have a long road ahead to get to pain free, but this is another step in the right direction. I have learned a lot about myself through this, and have been supported by amazing friends and family. My husband and son have been dragged along on this experience with me, every agonizing step, watching and helping me through it all. But, the one thing I can be proud of, the one thing I have held onto the whole time is my optimism. I have always said I'm an "eternal optimist" and this past year that has been tested, but I never let go of hope that the doctors will find a way to fix this. And we are finally making progress toward that!

I thank you for your support and prayers as I continue on this journey. Now that I am in a bit less pain I plan to go back to crafting and inspiring, because it brings me joy! We all need a little more joy in our life, and if crafting is your joyful hobby- I hope you will join me in creating wonderful projects!
Have a Blessed Day.
Alicia

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