Surgery #3 Next Tuesday

The belly pain and nausea are not going away. Pelvic ultrasound (what a euphamism!) shows I have a cluster of cysts on my right ovary that do not look normal, and a 5-7 cm uterine fibroid off to one side. Nothing to panic over, according to all the docs I’ve been dealing with during the last year. More, really. All this has shown up on my imaging for many years.

But because the cysts look abnormal and they could be causing or contributing to my symptoms, they’ve gotta go, along with the ovary they are tangled up with. In. Whatever.

And since I’m not really using it, and the fibroid could also be involved with my symptoms, I decided to let them take my uterus out, too. The left ovary looks to be in good shape, so I will keep that and thus be able to make my own hormones, which is VERY good.

All will be done laparoscopically, which will:

1. Make for a longer surgery

2. Make for a shorter recovery time (2-4 weeks, we’ll see)

3. Add to my belly scar collection

My GYN, whom I adore, assures me this is an outpatient surgery, and that I can climb the stairs to my apartment that very afternoon. But she told me I can stay in hospital overnight if I need to.

So think of me next Tuesday. Before that, too! I have to try and unpack some more and get my place organized and stock my fridge, etc., while I am in what is now a constant state of nausea, and thankfully, only moderate belly pain.

And I hope, hope, hope that, after recovery, we’ll find out that these things were the cause of all my belly problems. Wouldn’t that be great? If not, the search continues, although my periods will not. That alone is going to be helpful!

More as it happens.

Out of comission

Sorry I’ve been off-line for so long. Have a good excuse, though. In the space of six weeks I’ve had:

  • Three trips to the Emergency Room
  • Two surgeries
  • One diagnosis of a very rare condition (Mucosal Fibrosis)

All this in addition to my lovely chronic TBI (Tick Born Illnesses). As you may have guessed, I have lots to say about the sad state of part of our health care system. More later as I get better.


It’s been a while since I’ve posted, mostly because I had a terrible summer of mostly feeling bad. Same with fall, although there were a few good days (or sometimes hours) where some of you actually saw me!

Since I last wrote, I’ve received these diagnoses via lab tests from my new doc:

  • Late neurological Lyme disease
  • Bartonella infection
  • Chronic Human herpes virus 6 and Epstein-Barr virus infection
  • Autoimmune reaction to wheat and dairy
  • Sensitive to eggs, almonds, peanuts, soy, and pineapple
  • Nutritional deficiencies
  • Hormone imbalance
  • Irritable bowel
  • Irritable bladder
  • Neuropathic, muscle, and joint pain

The good news is that I have been able to stay on treatment for the past six weeks (yay – a first). It involves thirty+ supplements and drugs that I must take every day (including B-12 injections). And I am adding many other detox items to my protocol, including an infrared sauna, which we are expecting to get delivered this week.

The bad news is that I’ve been doing relatively little writing and art. I’ve had to put nearly all of my creative energy into my healing protocol and cooking (since I really can’t eat much off the shelf any more – soy, wheat, dairy and eggs are in everything!).

But I’m moving forward, thanks to my lovely partner-husband, fantastic friends, and a wonderful writing group and writing coach. I am also working with one of my favorite energy healers again, and am signed up to take some weaving and fiber-art related classes this fall.

I’ll try to be better about posting regularly. Thanks for checking in, and don’t forget to let me know you were here by leaving a comment. It’s terribly isolating to be ill for so long, and I love to know when you’ve visited me.

Cheers, and hope to chat soon!


But You LOOK Good…

Here’s a couple of things for those of you who want to understand what it’s like to be chronically ill.

First, a good description of Lyme fatigue I found on a support bulletin board. It was an answer to a guy who said he wanted to understand why his formerly vibrant wife (who now has Lyme Disease) could only sit on the couch and watch TV all day:

“Perhaps, you can think of it this way… Remember a time when you had a very bad flu, now, add your worst hangover, then think of what it might be like with cotton in your head, place on that sore muscles after a marathon, mix in the fear of not knowing how you are going to feel from one moment to the next, or if you will ever regain your stamina again, and maybe, just maybe…you might begin to catch a glimpse of what a GOOD day feels like.”

Second, here is a link with an excerpt from a booklet published by the Invisible Disabilities Advocate (

But You “LOOK” Good! The wrong thing to say to someone with a chronic illness

The Opposite of Fate

I’ve had a miserable two months. My usual symptoms have gotten worse, and I’ve been hit up with new symptoms that have my head spinning, including shortness of breath, racing irregular heart beat, body-wide hives and insane itching everywhere, including places that just shouldn’t itch (hands, bottoms of my feet, inside my ears, etc.).

After reading Amy Tan’s essay called “The Opposite of Fate” in her book of the same name in mid-December, I am now suspicious that my diagnosis of Fibromyalgia/Chronic Fatigue Syndrome may be wrong.I’m going to a specialist in chronic Lyme Disease at the beginning of February, and once again find myself in the very weird position of hoping to be diagnosed with an awful disease.

If it is Lyme, there is the potential for treatment and improvement, which is very exciting. If it is Lyme, I’m guessing that I’ve had it for twelve years or more. That will make it difficult to eradicate, but I’d be happy just to have some energy and even part of my creative brain back.

In the meantime I whine only occasionally, I appreciate the generous and kind partnership of my husband, and I try to write, spin, knit and read when energy and opportunity are present. And nap. It turns out my cat is right: One can never have enough naps!

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