Thursday, September 11, 2008

Health Update

We should all learn to just relax and let it allll hang out a little more often. Cleo sets a good example here.

Thought I would post a little update about Terri's health, for those of you interested. She talked to the doctor this week, and we are feeling MUCH more optimistic about her treatment.

She has all the details here on her blog if you want the full tx, but the main message was that we're on the right track, and he's fully confident that she will be able to ease back into work at some point in the foreseeable future. We don't know when, but just knowing that it's GOING TO HAPPEN makes a huge difference. Hearing about her appointment made me realize how much we just needed to hear that her doctor has confidence in her, and in the treatment plan. Our hold on hope is so tenuous and fragile, we need all the bolstering we can get.

This whole experience has really made me think about how much faith we put into the things we are told, when in fact the truth may be something quite different. Whether we're talking about health or our self-esteem or our body or our work, we believe what we are told, unless we work hard to see all the angles and maybe discover something a little closer to the truth. Sometimes we are told the truth upfront, but often, even when it comes from an expert, the truth is something quite different.

If we had listened to the expert that told Terri basically to give up hope of working and that he had no idea what her prognosis would be -- basically, damning her to a life of hopelessness -- she would be so much worse right now than she currently is. She's not well now, but I can't even imagine how sick she would be if she hadn't continued to do research, even when her brain functioning was so faulty and she was so exhausted. She has spent practically every single day this past year researching these 'invisible illnesses' and ONLY because of that and the consequent actions we've taken, is she making progress.

I have had a lot of struggles with faith in the past few years, especially this last one. There have been so many challenges, and that pit of despair, that avenue of bitter disappointment, those deep pockets of fear -- are never many steps away. It takes an enormous act of faith to turn away from it and believe that things will change for the better. I have had plenty of crying jags in my car as my worst fears take hold of me, and part of the reason why I'm reading so much is for the stress relief. I know Terri has suffered far worse than I. But still -- we keep getting back up and getting back to the work of healing. Sometimes I can't believe how difficult it can be to just make that leap into action and hope.

Last night I had a dream that all sorts of good things were happening. It was a wonderful dream. At one point, someone handed me a vinyl record album: George Michael's Faith. (don't you love that album?) In the dream, I put the needle on the record and the song started to play. Somewhere in the middle, I woke up, with that refrain playing in my head. "I've gotta have faith..."

Yeah. My dreams are subtle like that.

So. Approximately one year from when Terri started to take a serious turn for the worse and continued getting worse for months and months, here we are, finally making that arduous climb back to health. It's still not easy. She still feels terrible quite often. Her life is still seriously curtailed. She is still horribly fatigued and has myriad symptoms. But sometimes they are better. And most of them are caused by the treatments and are not an accurate reflection of how her body is doing. And we are throwing every resource, every single trick in the book at this disease, at those damn bugs. And we are going win, dammit.

I have to pause for a moment to express my gratitude. Because I have so much to be grateful for. I'm so grateful that/for:

  • We caught this relatively early. Some people have been sick like this for decades.
  • We have access to the internet, and to doctors, and enough resources to treat this.
  • People told us over and over to look into Lyme. Thank God.
  • We live in a cozy apartment that is not overwhelming to take care of.
  • Our kitties are such funny little beings.
  • Friends and family who check in on us.
  • Our library is friendly and full of amusing books.
  • For my own health, which I now vow to guard fiercely.
  • For our dear guardian angel, whomever he or she is, who has someone kept us from the brink of utter disaster time and time again.

And thankful for this blog and people who have reached out to me through it. Sometimes I wish I were more inspiring, or wrote more beautifully or thoughtfully, or that I posted more amazing photos, or that I could show more crafty genius. I wish I had more to contribute. I wish it showed my best side (whatever that is). Instead, it just shows me. Mostly the homemaker-y, geeky, introverted side of me. But still. It's good to be able to share it with whoever reads this.

So, thanks. All twelve of you. Heh.


Kate said...

I'm happy to be one of the twelve.

You write wonderful things that inspire me to think and be a better person and a better writer. I'm glad I found your blog.

And I'm glad for the positive prognosis.

Daphne said...

Thank you, Kate! I love your blog too, it's so nice to know you're there. :)

Allison said...

I am glad to be one of the twelve, too. :) I feel lucky to get this window into your life.

This is really beautifully written. I am sure Terri appreciates your support. I am sending positive energy toward her recovery.

Clare said...

I just read your latest posts...and it has lifted me up this morning! I think my perfect day at home would be baking some bread, working on fixing something on the house (like linseed oiliing my new outdoor chairs), and may mending or starting to create something out of my scrap drawer with my antique sewing machine, while listening to NPR and my favorite music all day. Sending good vibes your and Terry's way! I have a tarot deck, perhaps you can help me with it when you are back in town :o)

Daphne said...

Thanks for the sweet comments, everyone.

Clare: that sounds like a pretty darn-near perfect day for me too!

stefanie said...

I'm with Clare, your post is very uplifting. Good for you and Terri being advocates for her health. It is disconcerting that we have to do this, that we can't just go along with what drs say like we are taught when we are young. Drs can be wrong though well-meaning. Good for you both for not giving up. And Cleo, with a cat like that you can't help but smile :)