Tuesday, May 15, 2012

Here I am!

Hello, my lovely followers. I know I've been absent for too long, and I want to start by apologizing. My other conditions have flared immensely during this recovery, and they affect my energy and cognition greatly. But also I just kept wanting to wait until I could type the perfect post, but since it's obvious that might be a while, I decided to just do what I can.

I'm on week 10 of my recovery from my revision surgery and I'm doing better than last time. The stim still isn't controlling my pain effectively, but at least it's not hurting me (well not often, but we'll get to that later). I haven't had much programming because I've been unable to leave the house most weeks, so there's still a lot of room for improvement with that. Mostly I'm positive that more can still be done.

Here are the highlights from the last 10 weeks:

The lead on the left side is working much better than the lead on the right side. The right side seems to have more swelling and often when we turn on certain contact points on the lead, I feel stinging instead of the pleasant tingling and buzzing. Ouch. The hope is that it's still healing and maybe not as primely placed as the left side, so it might just take more programming tweaks and time before I get any pain relief there.

At one point during my recovery, the stim started causing superheadaches that actually involved my Trigeminal nerve, too. Luckily that has mostly passed but for a while there I was determined to cut my head off.

My pain doctor started me on Topomax, an anticonvulsant, to help with my Trigeminal nerve pain in place of the gabapentin. I had a serious reaction/side effect to the drug and my entire skin felt prickly and itchy for weeks. It was miserable because the stupid drug actually worked and I could chew food without pain! But I also had to take several cold oatmeal baths a day and stay doped up on Benadryl to keep me from going mad so we dumped it after 4 weeks.

This recovery has been harder emotionally than I expected. Being unable to leave the house and flaring constantly has been rough. Any time my health changes for the worse I have to get used to a new normal. My new normal is that if I stand for more than 2 minutes my hands begin to shake, I get dizzy, and become parched as if I just ran a few miles instead of brushing my teeth. I'm using a rollator walker to get around often and depend on my boyfriend more than ever. That's not been an easy adjustment for me. I value my independence so much and chronic illness takes a lot away from us. I didn't realize how much I relied on the little I had left, and to watch it be chipped away from me even more over the last year since I started this string of surgeries has been heartbreaking.

I know it might not be forever, and I'm working very hard on getting to a place of acceptance with it. Unfortunately before you get there, you usually have to grieve first. And I've been grieving. I'm reaching out to my online support community of chronically ill people and my friends and family. I make sure I laugh a lot and try to stay in gratitude. Some days I'm just angry and I cry. I let myself feel that and then try to move on. There's no set path for us in dealing with the loss we experience through our illnesses, so I just do the best I can each day. I'd be interested to hear from any of you on how you've dealt with your losses with the headaches or any other ailments you suffer from. I think we can learn a lot from each other and find strength in fellowship.