April 21, 2016

How My Husband is Doing This Spring


Hello there.

The last detailed update about the state of my husband's chronic health problems was about two and a half months ago. There have been a few changes.

We now have another condition to add to the list: low thyroid (most likely due to taking the anti-arrhythmia medication, Amiodarone). This news actually gave us a little hope because Mark can take another medication to bring his thyroid level back up, and maybe that would help how he feels overall.

Since seeing his Endocrinologist, Mark's dosage of Levothyroxine has been upped twice. It has taken many weeks, but he is a bit less tired and bit more hungry.

One step forward....

The sore between his left-hand ring and pinky fingers is still trying to heal, and the bandaging for it created another sore between his thumb and forefinger.

Those two sores and the little hole still left in his chest got infected again, resulting in another round of IV antibiotics. Just when Mark's appetite was improving (antibiotics tend to upset his stomach).

Two steps back.

I would be very surprised if Mark's infectious diseases doctor isn't seeing the same pattern that I see has emerged over, at least, the last year. He seems to be able to be off of antibiotics for only about three to four weeks before he needs them again. I can only assume that a round of antibiotics helps, but does not cure the infection like it should; like it would in a healthier person.

And that's a scary thing.

Just yesterday, in fact, the ID doctor decided to discontinue the antibiotics. I'm willing to bet Mark will need them again within a month.

He's on a merry-go-round.

How Mark is doing mentally changes each day with how he feels physically, or how frustrating (or not) things are for him. A couple of weeks ago, we talked about whether or not he feels like his quality of life makes everything he's going through worth it. He answered by admitting to me that he has thought about stopping dialysis, that maybe he's getting near to just being done.

I thought he'd never feel that way. He thought he'd never feel that way.

Chronic illness -- being sick all the blessed time -- is rough. Really, really rough.

The new walkway that leads out to our new back patio, coupled with some very nice spring weather, has lifted his spirits....


But then he had a bought of nausea last night while getting ready for bed. As Mark gagged over our bathroom trash can he said, "I'm so tired of this."


April 5, 2016

A Funny Thing Happened

I am in an odd place.

A hard to explain place.

I think I've said that a lot over the past year or so. But now it's, like, more.

For the last three weeks, I have been thinking and noodling and pondering just what is going on with me. Where am I at? What do I want to say? Do I have anything to say?

That last question is the most important because you see, I recently read something another blogger wrote in which she was giving new blogger advice. One piece jumped out at me and I have been chewing on it ever since. She said to write what you want to read.

Yes, of course! That is excellent blogging advice and it has given me much pause.

It made me dive into my archives and purge them. Yes, I decided to delete a ton of old posts that had gotten very few views and/or were just plain dumb. I cannot believe how many posts I published that were really just patent fluff.

A few days later Google emailed to inform me that "Googlebot identified a significant increase in the number of URLs on http://www.imdancingintherain.com/ that return a 404 (not found) error."

And I had to laugh. You've got to be kidding me. I could care less if those links no longer show up in search results. Actually, I prefer they don't (which is why I deleted them).

Obviously.

The next day, I received another email, this time from AddThis, the social sharing app I use. They wanted to congratulate me because they noticed a traffic spike on my website.

And again I chuckled.

So that's the funny thing that happened. The not so funny thing is that I seem to be in a difficult place in my life that I don't know how to write my way through.

I noticed something while sifting through my craptastic archives. The tone of many of those posts sounded a lot happier. I used lots of humor and excited exclamation points. I wrote about Twitter and knitting legwarmers and shared photos of my baby bumps and what I looked like in high school.

I thought this stuff is so irrelevant to my life now; I'm not so merry these days. And then I thought, I can't, nor do I want to, write like this anymore.

My life has changed. I've changed.

The dominating force in my life now is my chronically ill husband and caring for him and our children. I would love to be a voice for spousal caregivers, especially those who are still young(er), like me.

"Write what you want to read."

But I don't think I can. I don't have words of wisdom for others going through what I'm experiencing. I don't have strategies to share for coping with this situation. I already spend too much time thinking about how much Mark's condition sucks and what's gonna happen next and what it might be like when he dies....

Do I need to write about it too? My aunt once said to be careful to remember this is a blog, not a diary.

Blogs should offer the reader something. Something helpful, to learn, to be inspired by or to laugh at.

You can see my most popular posts over in the sidebar. Currently, ONE has to do with what's actually going on in my life right now. And I promise you, it has a ton fewer views than the others listed.

I titled my blog "Dancing in the Rain" because I believe that even when life is hard, you can find things to be joyful and happy about. I still believe that, but it isn't coming as easily as it used to.

The word I chose for this year is Genuine, but I feel like a sham. I'm not sure I should be pontificating about anything. I can't be the poster child for spousal caregivers. But I can't ignore it either. It's too big.

A couple of years ago I thought I could be a good blogger, but now I don't think I have anything of value to offer.

I'm at a loss.


March 14, 2016

Alone in the Village

There are many doctors (and their nurses or assistants) involved in my husband's health care.

An entire team including a nephrologist, technician, RN and dietician at the dialysis clinic.

A palliative care nurse.

Home health nurses who change dressings and check vitals a few times a week.

A paid caregiver provided by the state who helps with some housework, appointments and other errands, and helps Mark get a good shower every week.

Then there's me.

March 2, 2016

I'm Less Important Than Everyone Else


I have always felt like my needs/wants/desires have been less important than anyone else's.

No, really.

Kind of odd for an only child, wouldn't you say? (Only children are generally characterized as a bit on the "it's all about me" side.)

Marrying the man I did doesn't help.

February 27, 2016

Forcing Thankful

I've been in the downy-dumps most of this week, despite trying thing after thing to raise my spirits.

It hasn't been all terrible-awful, but definitely a whole lot of blah and meh. And sigh. And maybe some ugh.

One thing -- on top of the other many things -- which has been weighing on me is that my husband has had C. diff since (at least) sometime after his last round of antibiotics began the week of our son's birthday last month.

February 22, 2016

Losing Myself

I feel like I'm losing who I had been becoming before my husband got so much sicker.

I was an insecure young adult. I met Mark when I was 20 years old and was that clingy girlfriend. In my defense, I had recently become visually impaired and had just left home. Also, my inner child.

Marriage, babies, my 30s, blogging, and some therapy later, I felt like I was finally coming into my own. I felt I had gotten to know myself pretty well. Just Jennifer (my former blog name). The Me I am aside from The Carer of All Things.

Besides WifeMomCaregiver, I am someone who likes to write a blog, make things with yarn, go for walks, watch TV, listen to books and hang out with friends.

February 10, 2016

Why it's Become Hard to Talk About My Feelings


This.

This right here is what I have been struggling with reconciling and overcoming in order to be able to share the genuine thoughts, feelings, and experiences of my life right now, specifically as regards my role as a spousal caregiver.

But not only that. Because, you see, everything in my life is colored by my husband's health problems. My other relationships, my parenting, how I see the world...

February 5, 2016

How My Husband is Doing

I thought about titling this "How My Husband is Actually Doing" because there is the surface-y version and then there is reality.

Or his version. Because anytime someone asks Mark how he is, he will almost always, to almost everyone, say, "I'm good." While I, in the background, shake my head.

Sometimes I have to force myself to not snort at Mark's assessment of how he is. It's absurd to me that he can so easily prattle off the words, "I'm fine", without choking on them.

"How can you say that??", I'm thinking.