Christmas Scene

Trying to keep shining

It’s time for my regular irregular update, I mean my quarterly update…no, that’s not right, at least that wasn’t my intention, to blog quarterly. I sit brokenhearted but not broken of spirit.

Bloody hell.

Hey kids, here’s the scoop. Actually that implies some kind of breaking news. And I just can’t seem to commit to anything current enough. The only thing that’s breaking is my pride. And little piece of my heart I suppose.  Enough about that later.

SO, it’s January, that means Christmas has come and gone. During the early fall, Mike was concerned about not starting his Christmas shopping soon enough. “You know how things are always the last minute at Christmas, you know that’s going to happen again!” Well, shoot. He had a good point. We all have good intentions of not procrastinating, and I do think each year I do something better than the year before, but as the Big Day got closer, things got mucked up.

One mucking factor is that during sometime in November, my right knee began to ache more than usual. Several weeks later, I’m sitting in an exam room of my orthopedic surgeon, looking at an x ray with his nurse practitioner. She asked,

“So, what do you want to do?”

“What are my options?”

“Total knee replacement. You’re bone-on-bone.”

Yikes. While I mulled it over, in the interim I had cortisone shot which caused great pain several hours later, and didn’t help in the long run. Soon I was back at the Docs to set a date for surgery.

Since November, the pain has increased, and simple chores and movements have been difficult. Even the thought of yoga was a turn off. But still, it’s not all miserable, although it’s becoming more miserable than not, I am still going out, to the gym, bank, my writing group, even groceries. (You can hang on to the cart for support!)

It’s been interesting, and disconcerting as hell, contemplating being totally dependent on others after this surgery. So not looking forward to it, but I know that this will be a great thing, and by spring, I should be feeling a LOT better. But when you’re used to being a hands-on caregiver/parent – it’s sort of horrifying knowing that this will all change. Speaking of caregiving…

My older son Mike has been going through some lousy GI stuff for almost a year. He feels fine for a few months, and then he gets feeling ill, begins to vomit, and this lasts for a couple of days, and then he’s OK. Pretty sure it’s NOT cyclic vomiting syndrome, his brother Tom went through that for months back in 2010/2011, and Mike doesn’t seem to fit the pattern.

Interestingly, during the exams and testing to figure out what might be the problem, it was discovered that Mike has

Navigating the Ups and Downs


NAFLD – Non-alcoholic Fatty Liver Disease. This – unfortunately  – is quite common with American adults. It doesn’t signal automatic liver failure, and it can even be reversed with good self-care habits like nutrition and exercise. But there’s also an enlarged lymph node nearby that they are keeping an eye on.

But this undiagnosed pukey stuff has taken a toll on us.

Ironically, the night that Tom was to be honored at a fancy American Liver Foundation event, Mike was too sick to go. He was stable enough to be home alone, but later that evening he had to be brought to the ER, he was so miserable.

Ditto on Christmas Eve/morning, and again last week. But we did learn something. Mike had an endoscopy on 1/6 and the doc took biopsies. Well, they just found out last week that he had H. Pylori bacteria present in his stomach. So, they prescribed two antibiotics, but wanted him to wait a few days before he started on them.

Currently, he’s doing ok, but not great.

Not only does it suck for Mike, and for us as the weary parents, but it’s so painfully reminiscent of Tom’s various bouts of illness. While I’ve always kept my guard up concerning Tom, overall the feeling of dealing with this kind of uncertainty is – shit – kinda thought we were done with this stuff. The “stuff” being big picture worrying and the more immediate frustration of plans getting messed up is exhausting and sad.

So, I mentioned the fancy Flavors event that Mike missed, and also being in the hospital on Christmas morning, but also in the last couple of weeks he’s attempted a live wrestling event, but had to go home not long after it started.

A couple days later, after an ER trip, a doctor’s office visit, and finally feeling good, he attempted a second wrestling event, but had to turn around and come home before he even got there. Then he felt better on Saturday and into Sunday, and we made plans for the four of us to to to Chunkys, a pub style movie theater to see Patriot’s Day. But again, Mike felt poorly and had to leave before he could eat.

But yesterday he felt great and started eating regular foods and tolerating them fine. This morning started out OK, but as the day went on…pain and upset stomach. So, realizing that the antibiotics might be to blame for the more recent issues, we are just monitoring. AND applying some essential oils to help!

There is another meeting coming up in Feb with another specialist – hoping this will lead to some answers.

So what’s my point? What about that achy-breaky heart feeling I mentioned earlier? The point is, life has been sucking around here. You can glean that from what I just said, but what has been tougher is how MUCH this is similar to what Tom went through.

Unbroken Heart

There’s the physical fatigue, from helping Mike when he’s been acutely ill, mostly in the middle of the night, but sometimes all day, the physical pain I’m in because of my friggin knee, and the poor nutrition we all are going through because take-out and boxed foods are much easier. Not fun, but what are you going to do.

The emotional part is tough too. Crying every other day (and that’s just me), following up on meds and appointments and trying to describe things to an unknown on-call doc at 2:30 in the morning. Trying to be up and positive with friends, trying not to vent too much when I need it way more that usual. Trying to be positive with Mike.

Watching Dave doing more because I can’t. Hoping he stays healthy. Fearing that Mike won’t be well by the time my surgery comes, and Dave will be torn between patients.

It’s all too familiar and it’s heartbreaking.

And yet…and yet we still have many good things to be grateful for. Medical professionals who are compassionate and communicative. Spring is coming – eventually – yes? Tom is back at school with a renewed plan for success this semester, AND is preparing for his third Boston Marathon.

And this would be a great time to appeal to his fundraising efforts. Every little bit DOES help! The American Liver Foundation does great work, and because liver disease continues to affect our family, we take this seriously and very personally.

Carry on Friends – Shanti and Shalom.