Saturday, March 24, 2012

Everybody told me so......

Well, I had to drop the idea of being a facilitator for a new lupus support group that will soon be viable in this part of the country. Some of the members of the yahoo lupus support group had cautioned me when I first told them about this facilitator's position, reminding me that lupus might just sneak up on me and I would have to drop out. Well....
Like many other things, I had to pass on this opportunity to help others with SLE in favor of taking care of ME. I felt like a flare was coming on, and sure enough it has emerged with some signs of vasculitis, along with the inevitable side-kick, fatigue. I didn't have the energy to even think of driving some 30 miles to meet the others for a lunch, and then back home. The traffic in that area of our metroplex is insane to begin with, and add a "loopy lupie" to the mix would not be good for my health.
Not only did I pass on this venture, but I called a friend to cancel on attending a neighborhood meeting.
All the while, feeling like I was letting other people down; not that I'm that important to their schedules, but also I felt like I was being undependable.
That's something I always prided myself on, is being punctual, ready with the right materials I needed for the meeting, and notes for discussion, should there be any time left at the end of the meeting. And I often felt others were depending on any brilliant plans for moving onward, when in reality I'm sure they thought I was just being a busy-body.
That may be true. But I still feel like I abandoned the group; left them to their own devices, so to speak. And, truth be known, they will do just dandy without me.
I'll just keep doing what I'm doing to spread the awarness of this complicated disease: writing on a couple of lupus -themed blogs and marketing my book, The Cards We're Dealt.
I'll miss the face-to-face contact, but I need to do this for my own health's sake. And the group certainly understood my reasons and wished me well.
I'll get over it. This is just another learning lesson: Maybe I shouldn't commit myself to any kind of project when I'm feeling very well that one particular day. Ever the optimist, I was sure I could handle this meeting schedule, the drive involved, and the lack of brain fog at that particular time.
But Lupus whacked me upside the head. So I'm taking the action to take care of myself, and I'll try to remember the next time I feel like getting involved in another project that lupus could sneak up on my blind side again, causing me to once again, drop out on the event.
One of life's lessons that I'm sure will be repeated soon. I'll start feeling better, and find or be offered a project and before I know it, I'll have my hand in the air as a volunteer. And then I'll have to drop out. Again.
That's one of the things I just hate about this disease. Well one day, and down the next, for no apparent reason. I find it difficult to plan anything even a few days in the future, knowing I might not be able to follow through.
I also know I need to cut myself some slack, and not feel that I'm letting others down. Of all people, Lupies certainly understand.
Someone once said "Just accept it. You don't have to like it to accept it."
Oh, okay. I'll accept it.
And I'll also not like it!

Friday, March 16, 2012


I've always got something going on in my ageing body. With lupus, you never know from one day to the next, how you're going to feel.
So I think I'm having a mild flare, since I'm running a bit of a fever. Maybe, maybe not. And it may or may not be related to the suspected flare, but I am also shaking a bit.
I'm not taking any prednisone; I usually do feel shaky while I'm taking even the least amount of pred. So I'm wondering if it might be my thyroid?
Years ago, I had the best energy I've ever had.....I was up all night, I lost weight while eating like the proverbial horse, and there was nothing I couldn't do. Until my PCP, during a routine office visit, asked me bluntly, "Are you taking speed?" Of course not. But I was in danger of having a stroke, he said. So he sent me to an endocrinologist, who said my thyroid was overactive and we needed to do a radioactive iodine to dissolve it. Hmmm. The word radioactive gave me a bit of a pause, but what the heck.....if that's going to take care of this situation, I'll go for, I it.
So I drank the Magic Potion, went home and planned for my family trip to Aspen. Lovely place, lots of things to do, great restaurants, and what did I do for two weeks?
I slept. Nearly all the time. Didn't want to eat. And when we got home, I discovered I had gained 10 pounds.
Egads.....So it was time to take a thyroid supplement. Take once each day, and I would be okay. This was, oh, about 20 years ago. Every morning, I take that little pill. Without fail.
Occasionally, my PCP will check my THS level, but it always comes back as good. No adjustments needed.
But it might be the right time to adjust this med. Why else would I shake? But, OTOH, I'm not losing any weight. Darn it.
So when I go see my PCP on Monday about my strange dizziness, nausea and clammy sweating and little pains under my left shoulder blade, maybe I should ask her about my thyroid.
Never a dull moment with lupus, eh?

Tuesday, March 13, 2012

Dizzy and sweaty

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What the heck happened to me last night? I mean, I was sitting in my recliner, watching television, and all of a sudden, the room starts spinning around. I felt like i was going to faint.
I told my son; he came over from his place on the couch, and felt of my back......It was wet. Like I had been dunked in water. It was a cold, clammy sweat....something I get from time to time when my blood glucose is too low.
I try not to let that happen ever again, since I had kind of "driven drunk" a few years ago. I woke up in Mineral Wells, TX, about 50 miles from home, with no idea how I had got there. State troopers stopped me. Heh. No ticket, they could tell I was more of a diabetic low sugar case than intoxicated.
Anyway, I've always said I'd rather have my blood glucose reading a little high, rather than risk taking another Magical Mystery Tour. I took my reading, when I felt I could get up without falling, and it was in the 300s. Not low.
Took some insulin. Puzzled over why the sweating. Never have I had that when my glucose was high. Only when it's low. So why now?
Some no - nonsense people said the words: Heart attack. Hmmm. Well, I know females have different symptoms from males when they have a heart attack. I didn't have any clutching at my chest in pain; I did, however, looking back at that evening, have a few little "muscle spasms" (I think) in my left side, under the shoulder blade.
I've promised my Lupie friends and others, that if i get this pattern of dizziness, pain and sweating, I'll call 911. Oh, yeah, I called my PCP's office to make an appointment.....she is out of the office this week. So next Monday, I'll be seeing her.....unless something similar happens in the interim....

Wednesday, March 7, 2012

A Blanket Apology

I have been remiss. I have overlooked many comments readers have left for me. Not a good PR thing to do. '
The only excuses I have are that Lupus Fog has been at work, and my technical incompetence makes it worse. So for all of you who have commented and I haven't read until now, I'm sorry. I didn't intend to ignore any of you, but if you have lupus, I'm sure you understand about the brain fog.
In fact, along with the technical incompetence, I told my son yesterday that I had an email in my inbox that I had no idea what to do with. It has to do with marketing my books, 7 in all, and I'm not sure what it says I should do.
Marketing is not my forte, as it is with other writers. I'm doing Indiana Jones style: "I'm making it up as I go along."
And while I'm here, let me promote a great support group for those who have lupus. It's LUPIES@yahoogroups. Best bunch of (mostly) women who love and support each other through this journey. And that's what it's all about, isn't it? That we all have a common enemy and are doing the very best we can, under adverse circumstances.

Tuesday, March 6, 2012

Brain Fog....and my body rebels, too....

We all have it. At some point in our Lupus journey, we encounter a stumbling block that challenges our belief systems. I was a great speller, BL. (Before Lupus). Now I find myself typing a simple word and wondering whether it's correct or not. More than likely, it's not.
I received an email this morning that I quite frankly, can't understand. It's probably a simple thing I need to do, to follow the instructions, but somehow my mind can't quite wrap around it. It's not anything that I could be arrested for, lol, but it seems like it to me....or the person I used to be, BL. (Before Lupus -- Oh, yeah, I said that already.)
I've had a small flare recently, and that may have something to do with it, or maybe it's my advanced age -- I'll be 74 in April. I only know it ticks me off that my brain doesn't work like it used to. I was a multi-tasker par excellence. I could carry on a telephone conversation while scanning my emails. I could cook and keep track of what's happening on television. Now, it's "choose one."
And, to make matters even more complicated, I've learned that once I have a flare, or any kind of minor illness that non-Lupies experience, too, like a stomach virus, I don't snap back in a hurry. In fact, it takes several days to recoup my energy and mental faculties.....which went AWOL when I first exhibited the symptoms of the stomach bug. No, now when I am actually over the flu, or bug, or whatever, I don't go back to where I was before.
You would think it would be that way. But with lupus, and/or my age, I find that I don't go back to where I was before....I go back a step BEFORE I had the flare, or the bug, or whatever knocked me flat.
My friends who are my age, tell me it happens to them, too....that they don't snap back to "normal" after being sick with something. So I don't think I can expect anything more.....
But, it's like the old expression: A mind is a terrible thing to waste.