Big MAC Attack

Those of you who have read the Gypsy for a long time know that I deal with a chronic and incurable lung disease called bronchiectasis. The past few months have ranked high on the challenge list for me.
 
This winter it seemed like things were getting worse. In the winter I had bronchial pneumonia and was on IVs for three weeks. The exhaustion started long before. I chalked it up to the holidays. I don't think that's it anymore.

At long last my pulmonologist referred me to an infectious disease specialist. After giving up 10 vials of blood, spitting in one cup and peeing in another, then getting a chest X-ray, I just had to wait. For eight long weeks.

The results are in. I haven't quite figured out quite how to process all this but the diagnosis is something called "mycobacterium avium complex" or MAC. Yes, I have a big MAC attack. It is related to the tuberculosis germ and it is very serious, but is not contagious.I was totally freaked when I tested positive on one of the TB tests (which is also used to diagnose MAC, but I didn't know that at the time.) I was frantic that I was contagious, so this is a great gift.

MAC appears to come from the environment (water, soil, air) and lands in people who are immune-suppressed and have lung disease. In fact, I came to learn that women 60+ with bronchiectasis are targets.

In other words, I could be swimming in the same ocean as Rick, walk the same dusty road or fly in the same airplane and if the bacteria was there, I would be likely to attract it, while it would roll off him like water on a duck's back.

The literature says treatment is long and arduous, involving a three-drug regimen of oral antibiotics for 15-18 months. The side effects of the drugs appear to be nausea and gastro-related, as many chemo symptoms are. A loss or radical change in vision is another even more disturbing one. Or, as my doc said, the cure may be worse than the disease. For a visual person, one who does art and loves to read, this is almost more frightening than puking is annoying. Apart from the coughing and yuck, one of the key effects of the disease itself is chronic fatigue. Which explains a lot.

To add to the mix (and to add insult to injury), the debilitating headache I've had for a week on only one side of the head appears to be shingles. I'll get that confirmed later today. But it sure looks likely.

I've just had it. I don't know whether I'm angry, tired, frustrated, defiant or conquered. A little bit of all, I think. And definitely depressed.

For those of you who have hung in here this long, I apologize for too much information. But I did so for a couple of reasons.

First, most of you who comment (and with whom I've established warm friendships despite the miles between us) do indeed live far away. But through sharing our stories over time, I have found a great network of support and encouragement. We cheer each other's successes, whether they relate to family or career, art challenges or sports achievement. And we bolster one another when we are down -- when we are sick, stressed, under too many pressures from work or school or illness or family issues or all of the above. 

I need that support right now.

Also, I know from my stats that a lot of people who visit the Gypsy don't comment. I wish they would! They may be colleagues or family members or old friends who see the post link on FB. Still, you can be part of that support system and I need you, too.

Until I am set up with a treatment plan, I don't quite know what is in store for me. I'll find that out very soon. I have a lot of questions for the docs and more pop into my head every day. I will always wonder if they could have tested me for this sooner (and why they didn't) and where it came from in the first place. Those are things I don't know that they can answer.

I have to let that go and focus on the road ahead, not the one behind. There are lots more that they can and those are the ones I  must focus on.

I talk a good game but that doesn't mean that I'm pretty darned scared, at times a bit emotional and I'm certainly not unaware of the life changes that this could bring. I do a lot of things and I love them all. I love working with community groups, going to art classes, savoring my friendships at book club and wine group and those things matter to me. As I have anticipated retirement, I've thought of things I'm excited to do -- travel, write, meet new people, make art, go beachcombing, take cooking classes, hang at the lake, get a new job or pick up part time or freelance work.

I know I may be able to do some of those things. I'm not quite sure at this point what is really possible, at least for awhile.

What I am holding in my heart right now is the example of so many people I love who have faced something I suspect is far scarier and more life threatening than this. The women in my world who have had cancer, breast, brain, bone. The men who have had prostate and other cancers. Our own Greg and others in Rick's family with thyroid cancer. Cousins who deal with ongoing pain or have experienced major surgeries. The friends who deal every day with chronic disease. And so many others who just deal with "it." Whatever "it" is.

I have role models in my mind -- some of you are among them; strong human beings who have looked physical and emotional challenges in the face and said, "You don't get me yet."

I didn't go through all the labs and appointments to get to this point and say, "Well, thanks for looking into it, but that sounds a little yucky, so I think I'll take a pass."

I'm in it to win it. 

Thanks for being there.

(And I promise that The Marmelade Gypsy won't be a daily journal of progress or back step. I'll keep you posted, of course. But it will be what it has always been -- a little bit of art, a little bit of life, a little bit of photography, a little bit of travel, a little bit of the joys, a little bit of the challenges. Join me for the ride.)