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| Apple trees in winter. Taken on one of our outings over the holiday to get apples and eggs at one of our favorite farms. Until yesterday (other than about an inch of snow) we have had a 'snowless' winter. We seem to be the only people without snow! |
He figures out why I have these crazy Diabetes Insipidus-type symptoms that keep me peeing a zillion times a day, and often many times during the night. Then, he FIXES it! He figures out how to get my sleep regulated and refreshing. He figures out how to get my ANS working again so that I can sit up and stand up and engage in normal activities. Or he just figures it ALL out and FIXES it and I get to have a LIFE again.
Of course, this isn't how it works. Still, a part of me arrives home exhausted from the exertion required of the travel and the appointment. And sad. Sad that we're still navigating a road of such uncertainty.
The best answer we have is that this is Lyme and other co-infections. If it is not Lyme disease, no one has any alternatives.
Right now I am beginning a completely new journey to try to achieve some quality of life. But Dr. Complex is very honest about the complexity and severity of my case. He makes no promises. The beginning of this new approach will be very slow, and it will take a lot of time before we know if it is working. If it does work, then once it starts working, the changes should be logarithmic and begin to happen faster. In the meantime it's still another waiting game, another unknown. The waiting sometimes feels unbearable. Just like I did with the Rocephin, I'm taking another leap of faith, not knowing if this treatment strategy will work or not.
Some days, like today, I'm overwhelmed by the sadness of continuing to feel that I've been working so hard to get my life back with no success. I feel the continued delay, and possible death of, so many dreams and life enjoyment.
I'm also very weary. I've been 'pushing through' and trying new treatments, some of them absolutely horrendous (the rocephin) with no breaks.
Sometimes it doesn't matter how great the doctor is or how great the appointment is. The news is still difficult and humbling. And even the best doctors in the country find themselves at a loss for how to treat patients like myself. I can't help but to keep wanting a magic bullet. And I know I am not alone in this. I want it for all of my friends struggling with disabling chronic illness. Perhaps this is why the main piece of artwork in my room reads: "Hope is the thing with feathers that perches in the soul and sings the tune without words..."
Blessings,
Emily
2 comments:
Yeah. I hear you Emily. Whenever I start a new medication I hope it's "the" answer that will make all of my symptoms go away and make life become something much easier.
In the last year or two I've done a lot of work in coming to terms with the fact that my body is never going to be exactly how I wish it was. It's going to restrict me in some ways my whole life, but what's important is to turn to look at the ways that I can find joy and real goals anyway.
Doing that - focusing on finding ways to enrich life despite illness rather than the only focus being waiting, waiting, waiting for the day you get better so that THEN you can start living - has made a drastic difference in my quality of life. Drastic!
It can be difficult to allow oneself to do this, because it feels like you're accepting a life you don't want. It feels like, if you let yourself move forward a little, you're letting go of the fight for wellness. But that needn't be so. You can keep researching, fighting, healing, resting WHILE refocusing on how to make the best of what you have NOW.
I so encourage you to do some of this, even if it's in tiny, tiny, TINY steps. Start writing a children's book about chronic illness just one sentence per day. Start learning to paint, just one tiny postcard at a time, or half of one. Start learning to bead, which you can even do reclining. Make one bracelet per day or per week, and sell your creations on Etsy - as slowly as you need to (and I'd help, of course!). Find out whether you can volunteer for an animal rescue from home - folding newsletters, just a few per day. Anything.
It will give you a sense of productivity, of moving forward, and of having goals aside from those that are medical. It will give you back the sense that you have SOME control over your future and your happiness and your time.
Ok, and enough unsolicited advice from me :) I just want to share some of the things that have made living with a chronic illness more bearable for me.
Best, best, best of luck. I'm always here to text or anything else you need.
Oof da. I admit, when I saw your title, I got a little hopeful "Was there One Answer?" gleam in my eye.
I wish there was more than one word to cover all the emotional states that "hope" covers.
According to my greek and latin-teaching mother, the story of Pandora's box-- y'know, the one with all the ills in the world in it? and Hope was last out?-- did not have a happy ending. The Greeks didn't consider "hope" (or whatever word they used that gets translated as "hope") to be a good thing.
Times like this, when I feel hopeful and then get the crash (no matter how short a fall), that makes a disturbing sort of sense.
...So I hope all sorts of things. But I know that you have help and are not struggling alone, and that makes me feel truly better. (And, y'know, it's All About Me. ;D ...)
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