Tag Archives: Trust

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.

Gratified

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Ever since I was diagnosed with a retinal hemorrhage in my right eye seven weeks ago, I’ve been wondering what my rheumatologist would have to say about it. I requested that a copy of my test results be sent to him from the ophthalmologist’s office. The main things I ascertained with the ophthalmologist at that time was that, yes, I could fly, as I had two trips pending. And yes, there was a 50/50 chance that it would clear up on its own.

Though I’ve been seen by this group for years, I was not comfortable following through on their suggested treatment, intraocular injections. Perhaps it’s unfair of me to say so, but they didn’t inspire confidence in me, not the kind where I would willingly subject myself, and my eye, to their prescribed treatment.

Since I did have the upcoming trips, I decided to lay low, go on about my business and wait to see what would happen. I knew I ran the risk of it worsening. As the ophthalmologist stated, “You might end up doing the shots just to get back to where you are now.”

The fact of the matter is that I see almost perfectly, when my left eye is compensating of course. When I close the left eye, it appears that I am seeing through a smudged glass door, not the whole door is smudged, just the top center portion. And with my new glasses for distance, it’s like I’m seeing 3D, as I told my son making him laugh. But as the optometrist told me, “I can’t fix what’s going on with the right eye.”

My readers (expensive compared to the 20-dollar-over-the-counter kind) don’t seem to afford me better vision than the 20-dollar-over-the-counter kind. I find that they are great when reading on my tablet or my phone, but not so great when reading on my laptop. I use an old cheap pair for that. In fact any old cheap pair as I have a pair in every room of the house. I’m not sure why the difference, perhaps it’s the distance from the screen. Who knows?

But that is what is most concerning to me, my ability to read. When I close my left eye, the words are blurred at the top and clear at the bottom. It’s possible to read, but difficult. I can’t imagine not being able to read at all. I’ve always read. As far as my memory goes, I’ve read. I don’t live one day without reading, ever.

My rheumatologist was concerned about this development and asked if the ophthalmologist had mentioned it having any relation to RA. I told him he’d said that we’d have to “work real hard to find a connection between the two.”

He agreed that I should get a second opinion and referred me to a retinal specialist he knows. Since I trust my rheumatologist implicitly, I feel I already trust this new specialist without ever having laid eyes on him. But that’s a good start. We shall see what he has to say and go from there.

Of note, my labs were all normal with two exceptions. My CRP was slightly elevated, but that usually is. It bounces up and down depending on what I don’t know. My left wrist is still bothering me, though it’s not persistent RA pain. I know what that’s like and that’s not what’s happening here.

But there is definite swelling on the left side of the inner wrist. While examining it, he turned it this way and that, twisting my fingers into a pretzel and bending my wrist in all directions without it causing a bit of pain. But then he pressed down on the swollen part and yes, that hurt!

I’ve been on very small weaning doses of Prednisone for over two months, and I would think that the wrist would have gotten worse, and the CRP higher, but there’s been no effect on it whatsoever. It’s not worse but it’s not better, so I’m to have it x-rayed. Perhaps it’s osteoarthritis because it’s not acting like RA at all.

The other abnormal lab was my white blood cell count; apparently it’s high and he wants me to repeat it in a week’s time. I explained that while I was with Carmen she caught a cold and gifted it to me. It’s been ten days now with cold symptoms, but it does take me a while to shrug these things off.

He wasn’t to be swayed from repeating the lab test even after I explained the probable cause for the WBCs being elevated. So here we go, another needle poke, but at least I’m gratified to learn my immune system does work. Somewhat.