Friday, May 25, 2012
Jacob, the rep, is amazing. He has given me more support and more information in the last two months than Chanie has in the last year. It hurts me to realize that perhaps Chanie just wasn't who I needed on my side during this process. Jacob started Wednesday by asking how much pain relief I'm getting, and sadly the answer is 60% at best and only 20% when my headache peaks over a 5-6. This is a dramatic reduction from when I had the stimulator implanted in May '11. Jacob was not happy to hear this information. Then he started checking my program and looked even more unhappy. He's not exactly sure what's wrong, but an electrode is hitting a nerve and stimulating the wrong area. He explained that I have 4 electrodes that run along my left eyebrow. I have spent hours with Chanie and done days of research and never knew that. Anyways, 4 electrodes just aren't enough, there should be 8. So why do I have half of what I need? My neurosurgeon is old school and that's just how he does it. Wait, what? Oh yeah, by the way neurosurgeons aren't really the ones who should be doing the nerve stimulator surgery, that's the job of pain management doctors. They seem to have more success, are more cutting edge, and their patients need less revisions. Wait...WHAT?!
My head was spinning. Why didn't Chanie tell me this stuff? I can forgive that this wasn't a conversation last June during my first revision. But the fact that this wasn't brought up when I needed another revision only a few months later is ridiculous. Now Jacob isn't saying I need another revision for sure, but if the new programs aren't working then it's a possibility. Well the programs aren't working. He wants me to give it a month, and I will, yet it's something you know pretty instantly.
What to do now? I'm back in Reno for a visit and I have a call into a Medtronics rep here to get his view. I've never met him, but I feel at this point the more opinions I get the better. Perhaps that was my original problem: I genuinely believed my neurosurgeon was the best and didn't consider other options.
When I first started researching Occipital Nerve Stimulators I read about a woman who ended up having 9 surgeries. I thought to myself, "Ha! Who does that? It will never happen to me!" But now I can honestly see it happening. I want a pain free life, or at least manageable pain, and I will do everything in my power to achieve that. However, these surgeries will not define me. I feel like I will give it one more go in the next year and be done. My body can't handle much more, not to mention my emotional health.
Monday, May 21, 2012
The biggest obstacle with my illness is living within my limitations. I constantly struggle with not doing too much and accepting that I'm not a "normal" 26 year-old. A counselor once told me I should stop "shoulding" all over myself. I thought that was funny, yet poignant. I get caught thinking, "I should be getting better fast..." "I shouldn't be so lazy..." "I should be working..." Of course that's ridiculous because healing has no schedule, I'm really not lazy, and at this point (as well as the foreseeable future) I can't work.
I wish I could say that this all gets easier, but I'm not sure it does. Every time I accept my limitations, they change. To be honest, I'm still coming to grips with the fact that I have two incurable diseases. I have always been an overachiever and my illness has forced me to reign in my expectations about what I thought my life would be at this point.
It's funny, my mom's coworkers are always asking her, "Is Megan's boyfriend still around?" I suppose they can't fathom a healthy person sticking by the side of someone who is sick. And to be honest before my boyfriend I couldn't imagine it either. I always saw myself as damaged because of my illness, and in a lot of ways I still do. Before I got sick at 21, I honestly don't think I could have seriously dated someone with so many health issues. The greatest thing is my boyfriend doesn't think of me as ill (yeah, he may be delusional) and accepts my limitations. I am constantly amazed that we're still together because he puts up with so much. Relationships are really a lot of work, but double that when someone is in chronic pain. My recommendation is don't get into a relationship when you're at your worst. Even if he/she is the perfect person for you it probably won't work since you can't start off on equal footing.