Wednesday, August 3, 2011

You are your own best advocate.

I don't know how many times I've sat in ARD meetings at school with special ed students and watched teachers, parents, and administrators talk over them and plan their lives out for them without even asking the kid what he/she thought. So I make it a point in each of those meetings to try to slow everyone down a bit, look at the kiddo, and ask him or her to talk about what they're struggling with at school, what they'd like to see done differently, or what support they think they need. It's important for them to have their own voice- especially as they get older and try to gain some kind of independence from their parents, they're going to need to be able to speak up for themselves and advocate for their own interests.

I've had to take a bit of my own advice to heart recently. I have had friends and family members with chronic pain before, and I've always sympathized with them, but never could really EMpathize with them until now. The onset of severe Cluster Headaches with this pregnancy let me put their shoes on, lace them all the way up, and walk about 3,000 miles in them. Cluster headaches are defined as a "rare headache disorder affecting 0.1% of the population". Thus, when you seek help from a doctor, most times you're just greeted with a sympathetic smile and a script for migraines. Many doctors have not heard of them, and those that have, haven't really researched them and figure it's a headache, so headache meds should work. (If you go to the website, notice CRISIS INTERVENTION is the first link on their menu- the number to the national suicide hotline. That's how desperate these things can make you feel. I can't imagine dealing with these without the kind of awesome family support I have.)

So I went through three weeks of this with my OB. Try Hydrocodone. Take 2 if it's really bad. I did that one night and of course, the pain meds didn't even put a dent in the headaches. They were coming fast and furious every two hours between the hours of 4 p.m. and 7 a.m. So I called them back a few days later, Hydrocodone doesn't work. I've done some reading and it seems like Oxygen seems to be the only treatment that slows the pain. Then there was a sigh and a Hmmmm on the other end of the line. I'm going to call you in some Tylenol 3. Try that. Bring on a few more nights of hard core pain and sleeplessness. Add to that an exhausted husband who wakes me up when I lie too still because he's afraid I've died from something exploding in my brain, and you have a pretty stressed out household.

Dad called the next morning. I lost it. I hadn't strung together more than three straight hours of sleep in almost a month and was emotionally exhausted from the pain and worry. I told him I felt like no one would listen to me. Like everyone says, Oh that sucks, sorry you're in pain, but you're SOL. I told him I just wanted to try the Oxygen treatment but nobody was listening because nobody knows what these headaches are. And I felt like such a little kid breaking down with my dad, and I later did it on the phone that day with my mom too. Sometimes pain makes us 5 year olds again, I guess. But I'm glad I did. Dad said, No, this is not going to work. I know I've got access to some oxygen and I'll have something figured out for you by the end of the day. And he did. My sweet, exhausted, stressed out husband, drove all the way to Oklahoma to pick up four bottles of oxygen for me last night after working outside all day in the 110 degree heat. He didn't even complain once.

I used the Oxygen last night, and the pain vanished within five minutes. I got more GOOD, PAINLESS sleep last night than I have in three weeks. And all because I took matters into my own hands, and well, my dad did too. Of course I called the doctor this morning to let him know what I'm doing, so as to make sure I'm not going to be harming Baby C. The people in the docs office just said, Well that's interesting, I've never heard of anybody using Oxygen to treat headaches before. And I said, Well, yes, that's because Cluster Headaches are very rare, but people do have them. So you may want to write this down for future reference. And it turns out that Oxygen is actually safer than Hydrocodone and Tylenol 3 for the baby. That's kind of a no brainer if you ask me.

So I'm learning that sometimes you do have to become your own advocate. And as my sister, the PA, says, All medicine is kind of a voo doo anyway. Don't just assume your doctor has all the answers. It's all just trying a concoction of different things til you see what works. And this time, I knew what would work, and went for it. I'm proud of myself for speaking up. And I'm overjoyed to have people in my life who don't let me stay silent and will speak up for me when I can't.


Lynn Brooks said...

You go girl! So glad you found relief you had me worried.
I have always believed that you are totally responsible for your health and who knows your body better than you. But with our medical system it can be hard to be strong enough do that.
Good job!