Tag Archives: Perseverance

Life, etc.

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So, I’ve been gone so long, I forgot how to get into the admin part of this site. I shall have to use their newfangled platform. New to me, that is.

You know what they say, life is what happens while you’re busy making other plans. Or as my mother used to say: Uno pone, Dios dispone. (one plans, God decides)

But as they also say, life goes on, RA and all. I don’t want to exclude my little parasite for fear that it might resent being ignored, like Glenn Close in the movie Fatal Attraction.  That was a great line, “I’m not going to be ignored,” she said. Why would Dan think that a force like her could ever be ignored.

RA is like that. It won’t be ignored, but we can try. Every day. Some days I’m more successful than others, and presently, it’s behaving itself. I have been doing manual labor for five weeks. I decided to go on a remodeling binge. My husbands pleads, “This it, right? We won’t do this again, will we?”

Funny thing, he has to do nothing, except put up with a little inconvenience, like sleeping in the other bedroom for a couple of weeks while they worked on our bathroom and closet. And maybe skirt around the furniture while they paint the walls. He’s at work all day. I’m the one home juggling the needs of several crews at once.

But I did bring this on myself. I never knew how many books I own, or how many framed pictures and artwork were on my walls. Seeing them all together was eye-opening. And I’m willing to lug my beloved books from room to room, no matter how heavy they are.

My only complaint is that if I sit too long in between spurts of activity, I have a hard time getting restarted. I feel like the tin man, rusty as hell, frozen in place. But as I told my rheumy who laughed at me (laughed with me?) it’s age, wear and tear, not specifically RA. Though I’m sure it’s in cahoots with the osteoarthritis, and we won’t specify the age. I’m years young, not years old.

It’s been a busy year. I was psyching myself up to live through another June 11th, the day my husband tried to check out last year. We are both still traumatized by those events. And while I was dreading the day arriving, my son had a car accident. He had an injured ankle, which turned out to be fractured. But the cause of the accident rocked my world. He’d had a heart attack, at the age of 35.

This was June 2nd. And at three o’clock on the morning of June 5th, while I was trying to sleep but couldn’t because they were going to do a cath that day to find out what heart damage there was, my older son called me.

You know that a 3 a.m. phone call is a bearer of bad news. I held my breath as I reached for my phone, thinking about his children, him, his wife. But they were all O.K. He had called to tell me his father had just died. From a heart attack.

He’d had three already, and had been told his only possible treatment was medications. I knew the day would come, but you are never ready. I’d spent part of my life with this man. And though we went our separate ways, we remained connected through our son.

I immediately wanted to split myself in two. Both my sons were in trouble and needed me. One, alas, far from me. I had to think. I know my older son has a wonderful support system in his wife and her family. I see how they love and respect him.

And my younger son was scared to death, his wife is pregnant and she has no real family close by. I had to stay put. But it was really, really hard living through the physical and psychological trauma of one son, while aching to be with the son who was feeling such emotional pain.

I will see him and his family in a couple of weeks. We are meeting up in Disney World. And then we see each other again for Christmas. I can’t wait.

My younger son is dealing with his new, hereditary health status and is still limping around. It will be a while before his ankle, tendons, and ligaments, recover to where he can get back to his karate training. He had scheduled to test for his 2nd degree black belt at the end of June.

Meanwhile we await the birth of his little girl in nine weeks or so. I can’t wait for that either and have broken out my sewing machine. More baby quilts to make.

Through all this, RA has maintained a presence, though not an overly aggressive one. I am completely off Prednisone and have had no other med changes. My labs are slightly off, but then so am I.

Hope all is well with you, dear reader.

 

Dancing In My Happy Place

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When you arise in the morning think of what a precious privilege it is to be alive, to breathe, to think, to enjoy, to love — Marcus Aurelius

I shall celebrate.

For the moment.

Had my rheumy check-up yesterday. Hadn’t been there in four months. I’d anticipated his incredulity when I told him what I’d been busy doing this summer.

It was not the usual summer, not by a heartbeat. But we made it through, almost. In nine days it will be fall. Or autumn, if you prefer. And summer will be behind us. My husband is doing cardiac rehab, working out and lifting weights, with a portable heart monitor weighing him down while he does it, mind you. He complains they go too easy on him. He stopped requiring dialysis weeks ago and the dialysis catheter was finally pulled last week. He’s driving and back at work.

I doubted that this day would come. I knew too much. I read the cardiologist all too well. His eyes shared with me what his words would not. And because I was also weighed down, albeit not with a temporary portable monitor, but with a permanent dread and a constant worry, I doubted. And I wondered, as I stumbled through my never-ending days, when my own collapse would come.

I’d taken precautions of course. When you have RA as your constant companion you cannot ever go without protection. I fortified myself by increasing my daily dose of Prednisone by an extra 4 milligrams on The Day After, as it will be forever known in my mind. I had already made the decision to stay on 1 mg forevermore. I want quality not quantity, I’d told my rheumy. He understood perfectly; he deals with the demon himself.

And so to forestall the demon rising and knocking me down when I could least afford it, I upped my Pred. That gave me some peace of mind, but still I waited and watched and wondered every morning when I took my dose. Would today be the day? Was it there? Closing in on me? Lurking?

A couple of weeks ago I caught a cold and felt like poop and I thought this is it, down I go. Thankfully, it happened after he’d been given the green light to drive. How’s that for lucky! I could give in to my cough and my sniffles and my lethargy as much as I pleased. And that I did, for two whole weeks as it turned into some sort of viral bronchitis.

But eventually, it went on its way and it came time to draw my labs for my upcoming rheumy visit. I was curious as to what the results would show. How bad would they look? I visualized the numbers based on the previous ones when there’d been no life or death crisis to live through. Well, yesterday I found out how they look.

They look normal.

Every one.

I haven’t been normal, well at least in this way, for twelve years. Twelve long years.

I don’t know why now, and I won’t ask. I’d already started the weaning process of saying goodbye to the extra Prednisone sloooooowly. My rheumy agreed and slowed it down even more. That’s OK. I can do slower. I see him again in December and by then I’ll be back down to the 1 mg dose, which I’d vowed to continue indefinitely.

Time will tell, as it does with all things. For now I’m to continue with the 22.5 mg of Methotrexate weekly. He’s so cautious he wouldn’t let me decrease my dose, not even by one tiny pill. I don’t want to change more than one thing at once, he said. All right then. I can take it. Literally.

So I shall rise above my disappointment regarding that and dance in my happy place.

For just a little bit.

And then, I will resume my plans to go see my precious baby grandson. A trip that was delayed by the events of this summer. I saw him born last fall and God willing I will see my beautiful boy this coming fall when he turns one.

 

Proof that life goes on.

Proof that life goes on.

Strong Women

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I am reading Isabella, Braveheart of France by Colin Falconer. The book itself is unputdownable. Which sounds funny because it’s an ebook. But this makes it easier for me not to part with it, to keep up with it, whether it be on my tablet, my phone or my laptop, where I’m supposed to be working.

Rarely does a story capture me in this way, but this one sates several of my appetites. It’s based on history. It’s based on French and English history, which fascinate me. It’s based on a woman, a strong woman, with whom I can easily identify with.

I don’t consider myself a student of women’s studies, but I often wonder how women did it. Since the time Eve supposedly went rogue. How did they handle life’s challenges? No matter the culture, no matter the society, women ended up relegated to second class status, if even that high.

How did they handle their personal and family needs in primitive times? How did they get up each morning to ferry the water from the river or the well and carry it home on their head or on their hip, how did they go out to cut the wood to build the fire to cook the food that perhaps they themselves had grown or gathered?

How did they deal with illness when there was no science to lead the way, or at least point the way? Many died in childbirth and there were other diseases that killed them outright. But RA doesn’t do that, not so genteelly, for it is vulgar and rude. It toys with you like a cat with a mouse.

I’m sure this scourge of a disease existed way before we ever put the wrong name to it and I wonder how all who suffered from it dealt with its invasions and assaults. What fortress did they have to shelter them from its slings and arrows? What did they do when it battered at their gates?

I wonder about all its sufferers from the past, but mostly I wonder about the women. For all that we are called the “fair sex” or the “weaker sex,” we have to be mighty in all that we do. Even while being accosted by an uninvited, malevolent presence we have to grit our teeth and bear it.

And so it cheers me when I read about strong female characters, real historical figures. Though obviously fictionalized to some extent, these women did exist. These women did persevere. These women did prevail, and even flourish, in spite of it all.

Women like Doña Antonia Avero, whom I “ran into” at the Castillo de San Marcos in St. Augustine.  avero2

I was both surprised and impressed to read
the words next to her portrait. I had not known this fact about Spanish Florida.

avero

 

I had never heard of her either, but I plan to find out if there is more to read about her life. Even at my age, I am always looking for role models, and for inspiration to help me face life with hope each day.

This might be another story I can share with my granddaughters. Already they have demonstrated a love for books and reading, which pleases me no end.

For you are never bound to one station or one place when you can read yourself away or beyond. When the portals to dreams and possibilities are opened for you by those who came before.