|Easier Pie and More Of It|
No, we're not getting rid of our wheel chairs just yet, or signing up for Zumba, but we're getting noticeably better sleep and we're able to do a little bit more all the time.
For example, I'm writing this blog post after making home-made yogurt, potting three geraniums, playing with the cat, and giving a tarot reading, and I still plan to do some more cooking after this "rest." I even put on fresh clothes today and I showered just yesterday, after baking pies. A year ago, any one of those activities would have been enough for two or three days, and I wouldn't have called writing a blog post "resting."
The fact that our progress is gradual says to me that it's solid. It means to me that we're building better health, not just getting a temporary boost. That could be wrong, and on bad days I think there has been no progress at all.
But you know how bad days are. On bad days I am sure that devils are prodding me with pitchforks.
On a good or even an average day, it's clear that we've made progress. Crashes last a shorter time. Here I am blogging and baking, despite just having gone through a really difficult half-a-month.
Just over two weeks ago, Hazel had major oral surgery that had been put off for years. For months prior to the oral surgery her pain was so bad she had to take massive amounts of ibuprofen daily. We were worried that the post-op period would be brutal --- and it was, but only briefly brutal. That she can sit up at her desk for a large part of every day, less than two and a half weeks later, is amazing.
In the past, it took two weeks for Hazel to recover from just an easy doctor visit - to Hill Park, for example, where everything is easy on the highly-sensitive nerves: the lighting is soft, Dr Bouch speaks gently to her and he barely touches her. And afterwards she would be exhausted and unable to go out again for at least two weeks.
But now? Only one week after that hugely invasive and painful oral surgery, Hazel was able to go out again to see the oral surgeon for a follow-up visit. And then only days after that follow-up, Hazel was sitting up, at her computer, and able to go an entire 24 hours with no ibuprofen.
The removal of severely impacted teeth is of course going to mean less headache and tooth pain, but would not explain the speed of her bouncing back after any appointment, much less oral surgery. Her improved sleep, better energy and overall greater stamina since seeing Dr Bouch, go far to explain the speed of her recovery.
I'm hoping once all the pain and tenderness from surgery is gone, Hazel will be doing really well. Right now she's not doing much worse than I was two and a half weeks after I had my wisdom teeth out many years ago, and at that time I didn't have M.E.
As for me, like I said, I have these great days like today, when I can do far more than I expected, and then I have rough days still. Recent days were rough, from the effort of taking Hazel to those oral surgery appointments and caring for her while she needed a whole lot more care.
Stress and worry, more trips upstairs to bring her things, more midnight wakings, shorter sleep - that all wore me down and gave me some very crashy time during her recovery. And yet here I am already having a great day.
Not everything has been peachy since starting in at Hill Park. I don't want to paint too optimistic a picture and give any other patients false expectations for recovery. There have been bumps in the road. I had some unpleasant side effects from one promising prescription and had to cut back. Then I lost some of the gains I had made.
But all in all, I am doing so much better, I've enthusiastically recommended Hill Park to friends, and two have taken that recommendation and thus far also been pleased.
It isn't cheap and they don't take insurance. And the tests and treatments prescribed aren't always covered by insurance, either. My improvement might have been greater or more rapid if I'd been able to afford more frequent follow-up visits and some remedies that insurance didn't cover.
That said, Doc Bouch and staff have been really understanding of our financial situation and have found work-arounds to get the most important tests run and prescriptions covered within our budget.
All of that might be no more than one ought to be able to expect from any real ME - Fibro - Lyme specialist. But beyond all that, Hill Park staff attend important conferences on these diseases, share info on the latest studies not only with each other and outside their practice but with patients as well, and raise awareness in the community. These people are really devoted to caring for the victims of diseases that can be as frustrating and wearing on doctors as they are on patients.
In sum, the last year hasn't been easy as pie but it has been easier pie, tastier pie, more pie than we had for a long time. Our results after one year definitely encourage me to raise, save and spend the money it will take to keep seeing Dr Bouch. When I think how hard life was a year ago, and compare it to this past month, our improvement in health is beyond price.