Wednesday, November 26, 2008

Happy Thanksgiving!

I am grateful for:
  • Being well enough to visit my family this week
  • My husband and my sons
  • Having such wonderful, caring friends
  • The chance to see an old friend this weekend
  • Antibiotics, anti-virals, and low-dose naltrexone!!
  • The support and caring I've received from all of my virtual blogging friends - thank you!
We're off to visit my family in my hometown, Rochester, NY. The kids are so excited about the snow! We have a full schedule, as always when we go there, but I think I've built in enough rest times that I should be able to manage OK. I'm really looking forward to seeing all of my family and my best friend from elementary school.

Hope all of you have a happy and healthy holiday and are able to enjoy time with your families!

Saturday, November 22, 2008

Wonderful Novel About CFS

I recently read a wonderful new novel about a woman living with CFS by fellow blogger Nasim Marie Jafry. Her book (her first novel) is called The State of Me, and it begins with a vibrant young college student named Helen. You can read a full review of the book on my book blog.

The author artfully blends information about CFS/ME with an engaging, warm novel about life and love. The book was published in the UK but is available through amazon (there's a link under my review).

Hope you enjoy it as much as I did!

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!

Thursday, November 13, 2008

Living the Horizontal Life

I expected to be feeling better by now, but I'm still very, very sick. I've been living horizontally for weeks now, lying on the couch and in bed, rarely able to accomplish much upright. I'm in the recliner with my laptop now, but even that is too much for me. My throat's hurting more and more, and I know I need to go lie down again in a moment. This is getting old.

Apparently, this is not only a herx reaction to my Lyme treatment, but also a classic CFIDS crash - a double whammy. I skipped two doses of my antibiotic, in an effort to relieve the symptoms of the herx reaction, but I was still left with a throat so sore it feels like I swallowed barbed wire and flu-like aches all over. I'm guessing I was exposed to a virus - one of the many that my sons and their friends have probably brought into the house!

I have an appointment next week with a Lyme specialist in New Jersey, about two hours away, just to be sure that the treatment I'm getting is adequate. The first doctor I called - someone my family doctor recommended - charged $900 for the first visit!!! Can you believe it? Now, the $300 charged by the one I'm going to see actually seems reasonable. It's insane. They said that lab tests will probably cost another $600. The financial stuff has been another huge stress lately - our cash reserves are pretty much wiped out from medical expenses. I'm sure that stress hasn't helped me feel any better.

There's been one bright spot in this dark period. A friend of mine came by yesterday to offer some company. She brought food for lunch, plus enough for a dinner for my family, and I really enjoyed talking with her. It was just what I needed. I feel blessed to have a friend like this.

I'm trying to remember to be grateful for what I have. I had a few days earlier this week when I felt depressed and overwhelmed, but I'm trying to stay positive now. Through all of this, I am aware that there are plenty of people with CFS who feel this bad all the time. I know I have been fortunate to have some good periods. But it also seems so unfair that when I finally found some treatments that help with CFS, I got Lyme disease.

Today, I am trying to completely give in to being sick and rest completely (as soon as I finish this blog entry!). I know that I've been kind of fighting against my body by trying to still get things done and just making myself sicker. So, I'm giving up for the rest of the day. I'm going to watch a movie (something that I'd normally consider a waste of time during the day) and rest, rest, rest.

P.S. How bizarre is it to have to work hard at resting?? Life with CFS is just surreal sometimes.

Tuesday, November 04, 2008

Setbacks and Starting Over

Well, here I am once again, flat on my back and horribly sick and trying to think in terms of mentally starting over. It seems that CFS is just that - a never-ending series of setbacks and starting over. The only constant is constant change; as soon as you get used to being in a certain state, it shifts again.

I have been mostly bedridden for the past week, going through a severe herx reaction from being back on antibiotics for Lyme. The only reason I'm able to sit up with my laptop briefly this morning is that I forgot to take my evening dose last night, so I feel slightly better - temporarily. I just took my morning dose, so I should be feeling crappy again by afternoon. Something to look forward to! I know the herx reaction means the antibiotic is working, but it's hard to think positively when I feel so bad.

I spent my weekend taking naps and trying to watch some of my sons' soccer games. That's all I did, but by 5 pm on Sunday, I felt terrible - severe sore throat, achy all over, exhausted, with pain in my knees. I've been resting as much as possible, trying to keep up with my family (with my husband's help), and escaping into fiction. Thank goodness for books, movies, and favorite tv shows!

To make matters worse, we're struggling with Craig's teacher right now. He's being difficult about helping Craig make up work he missed when he was sick last week, and he tends to talk to his students in a sarcastic, mocking way that Craig finds very upsetting. When Craig asked him what assignments he still needs to make up, he said, "Oh, come on, Craig." That was it - Craig still doesn't know what he's supposed to do. I really do not need this kind of stress right now - I know it's only making me sicker. If it weren't for Ambien, I wouldn't have slept at all last night.

So, I'm trying hard to get back into a positive frame of mind. Starting over. Working my way back to hopefully feeling "not so bad" again someday. Trying to take things