Wednesday, November 19, 2008

I Want to Live!

Yesterday, as I was driving (90 minutes each way) to see a Lyme specialist in New Jersey, I was listening to music on the radio and enjoying the sun's rays, and I just suddenly thought to myself, "I want to live!" I don't mean live in the sense of not dying but live in the sense of enjoying my life. This means that my will and my energy and my drive have returned once again! After three long weeks of being mostly bed-ridden and helpless due to a severe herx reaction from my Lyme treatment (plus a CFS crash on top of that), I am finally feeling like myself again. I did laundry today! I caught up on my e-mails. I went to my favorite local bookstore (and discovered it's going out of business - see what I missed?). And here it is, late afternoon, and I'm still upright and working on my laptop. It feels so good to feel like me again.

Not much news from the Lyme specialist. He wouldn't comment on the adequacy of my current treatment until he gets the lab results back, although he agreed that given my symptoms and my response to doxycycline, I definitely have some sort of tick-borne infection. And, since I went through another 3-week herx and am now starting to feel better, with my joint pain abating again, that makes sense.

But he was one of THOSE know the type. When I explained that I've had CFS for over 6 years, he smirked and said, "Of course, you know that CFS isn't a real diagnosis. It just means they haven't figured out what's wrong with you yet." Arrgh!! I tried to explain that although many different infections can trigger CFS to start, there's been a lot good research in recent years documenting very specific immune dysfunction in people with CFS... but you can't change the minds of people like him. On the way home, I wondered if I'd just wasted $1000 that we don't have ($300 for the visit and $600 for the lab work), but if he can document my diagnosis with concrete lab results (he sent my blood samples to Igenex and MDL - two well-known Lyme labs) and recommend treatment to get rid of it for good, then it will have been worth it. I would be happy to "just" have CFS again.

So, while I wait for my latest lab results to come back, I will concentrate on living my life! I want to:
  • Feel the sunshine on my face
  • Listen to great music
  • Read wonderful books
  • Enjoy the company of my friends and family
  • Cook and eat delicious foods
  • Live!
One of my biggest dreams at the moment is just to be able to take a walk again, and I think I might be back to that point by the weekend. We'll see. For now, it just feels good to be inhabiting my own body again, instead of constantly battling pain and exhaustion in an endless series of naps. I'm glad to be back!


Anonymous said...


At least you're having decent testing done at good labs. It's not uncommon for docs to doubt a CFS diagnosis when they believe infections can cause severe fatigue - it doesn't help when it hasn't been determined which one(s) may be causing CFS;) Plus a doc specializing in Lyme knows how it can screw up your immune system and probably thinks they have knowledge you do not. No doubt you've already encountered docs whose beliefs you don't share. This just means we have to use them for what we need and chuck whatever we don't;)


Laura (aka Mom) said...

Hi Sue,

I love your upbeat attitude! It's good to hear that you're feeling better. It's too bad that you gotone of THOSE doctors as far as accepting CFS (and, yes, I do understand). But, hopefully he will have something to tell you after all those lab results. I hope you enjoy the rest of your week!


Shelli said...

Welcome back! Good days feel soooo good after so many bad ones, don't they? It's tempting, but don't overdo it!

I hope they get the Lyme disease under control for you. And, I'd love to hear what books you end up reading!

Anonymous said...

Your strength, courage and ability to see the gift of life in the face of such challenges is beyond admirable....

Be strong and be well, Sue~!

Sherry said...

Yay and Hooray!

Anonymous said...

SO glad you are feeling better.
bless you!
Keep up the good work!

Anonymous said...

Difficult doctor aside, feel your joy at being able to do things that make you feel alive! This living with illness sure does make one appreciate LIVING.

Wishing you continued enjoyment. Thanks for sharing your happiness.


Amy Bennett said...

Great post! I hope you start feeling better soon & are able to live your life! It is even such a hard struggle for me! I am afraid I could possibly have Lyme Disease. I was just tested for it. I have a tick bite from 2 years ago that is still irritated. I think I might be almost hoping for the Lyme diagnosis instead?!?