I just noticed on my last post that I made a big boo-boo. "They Eyes Have It" Should have been THE Eyes Have It. So much for the double vision thing.
I have been back to the eye doctor, for a follow up of my last visit, when I had told him about the double vision.
Since the last visit, I had been online with my lupus support group that is soooo terrific, giving me information and insights into this disease so much better than any "learned physician" ever could. I'm not dissing my doctors, or any doctors, mind you, but they haven't actually lived with this beast that has no "normal" progression or symptoms.
And on the subject of my double vision, complaining that my PCP, my rheumy, and the eye doctor (I say "eye doctor" because I always have trouble spelling ophthalmologist)couldn't figure out why I was experiencing this, one of the members of the support group suggested maybe it had to do with Sjogren's Syndrome. HUH?
Of course, that's correct. I don't know if I had told my eye doctor about the Sjogren's or not, but yesterday, when he asked if I had had any more problems with the double vision, I very brightly said, "Oh, I think it might have something to do with my Sjogren's. I don't know if you have that listed on my chart or not, but it's pretty common for Sjogren's patients."
He kind of turned a bit pale, turned to my chart and then said, "Well, it just might be." No comment on whether it was in my chart or not; I'm sure he wanted to save face if he had, indeed, missed it.
So he checked my eyes, after they had been dilated, of course, and during the exam he stated my eyes "aren't too dry" and I resisted the impulse to tell him, "You're not looking at the world thru my eyes." He then asked me if I used my eye drops four times a day (they're OTC) and I said, "No, usually just twice." So he's telling me to use them 4 times a day now. Huh. But they're not that bad....LOL. Rest of the exam is positive. No diabetic retinopathy and the cataracts aren't ripe enough to talk about surgery yet.
Drove home, wearing those dumb dark glasses that really don't cut out the light coming in from the sides of the glasses, pulled the blinds shut, laid down and closed my eyes for about an hour. A total waste of time, since I couldn't watch t.v. read or get on the computer.
And I'm thinking, just like the preparation done before a colonoscopy, "There ought to be a better way to check your eyes," don'tcha agree?
Thus endeth my complaint for the day.
<Lupus
Friday, April 9, 2010
Friday, April 2, 2010
They Eyes Have It
I began having some double vision recently. Nothing to worry about, I told myself, since I spend a lot of time at the computer screen, staring and forgetting to blink. That will put anybody's eyes at risk for something even more worrisome than double vision.
Oh, it didn't last long, either. Another reason I tended to brush it off. A momentary, transient feeling that my eyes were not focusing properly, and that I was indeed seeing double of everything. I tested my blood sugar, since I'm diabetic, and I wasn't having a low blood sugar drop, something that can get me in real trouble, especially when I'm driving. (Remind me to tell you sometime about the time I was going home from the dentist at 4PM and ended up 50 miles from home at 6PM not knowing where I was and how I got there.)
Anyway, I mentioned it to my doctor during my most recent visit. She frowned and suggested I see my ophthalmologist. So I made an appt. No reason I should be having double vision, he said. Hmmm. Rheumatologist had also recommended I see the eye doctor. He wasn't too sure what was going on with that, but said my tests looked good.
So I'm reading the posts from my good buddies at a lupus support online site, and I mention my double vision. And sure enough, here comes the answer.....Sjogrens Disease can also cause double vision.
Makes sense. I have Sjogren's, too: dry mouth, dry eyes, so that could cause my eyes to act up in that manner. I went to the Sjogren's website, and sure enough, there it was.
Funny how it takes one lone, non-medical person to grasp the situation and respond with the correct answer, when the very same situation had stumped three learned medical professionals.
Sometimes I wish every doctor could experience one day in the life of a lupus patient. On a bad day. Then maybe they'd "get it." Nothing quite like experience, I say.
<Lupus
Oh, it didn't last long, either. Another reason I tended to brush it off. A momentary, transient feeling that my eyes were not focusing properly, and that I was indeed seeing double of everything. I tested my blood sugar, since I'm diabetic, and I wasn't having a low blood sugar drop, something that can get me in real trouble, especially when I'm driving. (Remind me to tell you sometime about the time I was going home from the dentist at 4PM and ended up 50 miles from home at 6PM not knowing where I was and how I got there.)
Anyway, I mentioned it to my doctor during my most recent visit. She frowned and suggested I see my ophthalmologist. So I made an appt. No reason I should be having double vision, he said. Hmmm. Rheumatologist had also recommended I see the eye doctor. He wasn't too sure what was going on with that, but said my tests looked good.
So I'm reading the posts from my good buddies at a lupus support online site, and I mention my double vision. And sure enough, here comes the answer.....Sjogrens Disease can also cause double vision.
Makes sense. I have Sjogren's, too: dry mouth, dry eyes, so that could cause my eyes to act up in that manner. I went to the Sjogren's website, and sure enough, there it was.
Funny how it takes one lone, non-medical person to grasp the situation and respond with the correct answer, when the very same situation had stumped three learned medical professionals.
Sometimes I wish every doctor could experience one day in the life of a lupus patient. On a bad day. Then maybe they'd "get it." Nothing quite like experience, I say.
<Lupus
Tuesday, March 30, 2010
A New Insight....
I've lived with lupus since my diagnosis in 1988. That's a long time. So you'd think I'd be more aware of the limitations this disease imposes on me, but that's not true, unfortunately.
Every day, I have a new revelation about myself and this disease, as we co-exist. I think every day that I understand what it can do, what it has done, to my body, mind and spirit, and every day, I am proven wrong.
I woke up this morning thinking about my headache. Not uncommon, since I suffer from sinus headaches year round; nothing serious. Then my Magical Mind began its "What if" journey:
"I'm supposed to give a presentation on April 11th. What if I'm not well? What if I can't do it? When should I call and cancel, with regrets?" And on and on.
I struggled from my warm bed, made coffee and got the morning paper from the front yard. I really didn't give my thoughts a second thought, for a while.
And then, as the mind will do on occasion, a thought came to me: "You don't have to make that decision today." Hmmm. Okay.
Then, "And it may not be your decision to make."
Huh? I thought. Then I realized how true that is.
We go through our lives, making plans. Then something like a chronic illness comes in and robs us of our decision-making processes. Many decisions are made for us, by doctors. Don't like it? Well, tough. You have to do what it takes to get better.
And you do get better, for the most part. For some of us, "better" is a relative term, but at least we're mostly out of danger and out of the worst part of the pain.
It's the day-to-day living that trips me up. I can do many of the things I used to do, pre-lupus. Or most of the things, anyway. And some of the things I can no longer do, are due to the fact that I've aged some 20 mumble years since diagnosis. I'm no longer able to sit down on the floor and pop right back up. I can't run any more. Maybe if my life depended on it, but just to get out and jog-- heh. My joints still hurt when pressure is put on them. That's just age, my dears.
So, this morning I was faced with yet another factor lupus patients have to deal with:
Sometimes our decisions are not all ours to make.
Today, I'm okay. Today, I could go do the presentation.
Tomorrow? Well, who knows? I still have good days and bad days. I'm just not going to worry about a possible bad day in the future.
Every day, I have a new revelation about myself and this disease, as we co-exist. I think every day that I understand what it can do, what it has done, to my body, mind and spirit, and every day, I am proven wrong.
I woke up this morning thinking about my headache. Not uncommon, since I suffer from sinus headaches year round; nothing serious. Then my Magical Mind began its "What if" journey:
"I'm supposed to give a presentation on April 11th. What if I'm not well? What if I can't do it? When should I call and cancel, with regrets?" And on and on.
I struggled from my warm bed, made coffee and got the morning paper from the front yard. I really didn't give my thoughts a second thought, for a while.
And then, as the mind will do on occasion, a thought came to me: "You don't have to make that decision today." Hmmm. Okay.
Then, "And it may not be your decision to make."
Huh? I thought. Then I realized how true that is.
We go through our lives, making plans. Then something like a chronic illness comes in and robs us of our decision-making processes. Many decisions are made for us, by doctors. Don't like it? Well, tough. You have to do what it takes to get better.
And you do get better, for the most part. For some of us, "better" is a relative term, but at least we're mostly out of danger and out of the worst part of the pain.
It's the day-to-day living that trips me up. I can do many of the things I used to do, pre-lupus. Or most of the things, anyway. And some of the things I can no longer do, are due to the fact that I've aged some 20 mumble years since diagnosis. I'm no longer able to sit down on the floor and pop right back up. I can't run any more. Maybe if my life depended on it, but just to get out and jog-- heh. My joints still hurt when pressure is put on them. That's just age, my dears.
So, this morning I was faced with yet another factor lupus patients have to deal with:
Sometimes our decisions are not all ours to make.
Today, I'm okay. Today, I could go do the presentation.
Tomorrow? Well, who knows? I still have good days and bad days. I'm just not going to worry about a possible bad day in the future.
Thursday, March 25, 2010
The Never Ending Search....
Sometimes I feel like a grand damme, one who has survived the outrageous indignities this disease can inflict on us, only to rise from the ashes to laugh another day.
Other times, I feel ground down, discouraged and listless, wondering why I have to live this way, when all around me are healthy people going about their own lives without worrying about fevers, aches, pains, medical expenses associated with this disease, and a life revolving around doctor's appointments and last minute excursions to the ER.
I had one such event last week. Oh, I wasn't really in pain. I wasn't even really in an emergency state. But I called my doctor's office one day last week, asking her why my legs were "jumping" and twitching uncontrollably. They told me I could come in at 11:30. I was there in 15 minutes. My son drove me, since I didn't feel like my legs would cooperate between moving from the gas to the brake pedal, and I might confuse the two and have a wreck.
So we sat in the lobby; I figured if I were going to die, I'd die right there in her waiting room, rather than at home. Her nurse took pity on me and said I could go to the back room and lie down, which I did. All the time, my legs were dancing to unheard music. I wondered if I could be having a seizure, and asked the nurse as she took my blood pressure and temp. At that moment, the doctor appeared. She checked me over and then shook her head, sighing, "We're going to take you on down to the ER. I don't know what's going on with you."
My PCP and I have become good friends thru the years. I have learned to ask questions, offer suggestions, and even sometimes remind her of how sensitive I am to some medications. This latest encounter was no exception. I told her I had recently started neurontin, at my rheumy's suggestion.
So I'm in the ER, still shaking like a leaf in a storm. Nurses and doctors bustle; questions asked and answered, mostly along the line of "where do you hurt?" and "are you allergic to anything?" And my answers: "I'm not really hurting. I just want the shaking to stop." And "No codeine, no phergan." I'm hooked up to an IV, an EKG is run, and I'm declared not having a heart attack....which I didn't think I was experiencing, anyway. Next came a kidney and lower abdomen scan; nothing found that could be causing my distress.
Upshot was, I was dismissed with prescriptions for Vicodin (which I despise and throw up immediately, so I discounted that suggestion) an anti-nausea med (which I filled) and -- heh -- an anti-anxiety med.
So they couldn't find anything wrong with this lady, so they decide I'm hysterical; I've been hyperventilating, so they'll just settle me down with an anti-anxiety med. I not only didn't fill that prescription, I trashed it.
Then I remembered: The neurontin had been in my system for about two weeks. It was working overtime on my nerves in my legs. I wouldn't take it any more, and see what happens.
So it's a week later. No more shaking in the legs. The neurontin is apparently gone from my system. So what now?
Now, I go back to the regularly scheduled appt. with the urologist, whom I had seen for what appeared to be a bladder/UTI infection that wouldn't go away. It was gone. Bladder scope shows nothing going on. Kidneys show up good on the ER scan. So nothing there. But I'm running a bit of a fever.
Infection somewhere. I normally run about a 97.6 temp, so to me, a "normal" 98.6 is a fever. The doctor, bless him, suggested there is an infection somewhere, not in my urinary tract, but somewhere, so he prescribes a low dose Macrobid daily for 30 days.
I sigh and take the prescription. It's worth a try.
This is the life of a lupus patient. Mysterious infections. Low grade fevers. Non-emergency ER visits. And a persistent feeling of "things just don't feel right." At times, sure, there are real emergency room visits. Real fevers. Real pain and fatigue.
Mostly, though, it's a constant, vague feeling of fatigue, fleeting bouts of mysterious pains and aches, urinary problems, some back pains, yada yada, yada. So quit complaining, Marilyn, I tell myself. You've been in worse shape.
Yeah, and I don't want to go there again. And that's why I complain.
<Lupus
Other times, I feel ground down, discouraged and listless, wondering why I have to live this way, when all around me are healthy people going about their own lives without worrying about fevers, aches, pains, medical expenses associated with this disease, and a life revolving around doctor's appointments and last minute excursions to the ER.
I had one such event last week. Oh, I wasn't really in pain. I wasn't even really in an emergency state. But I called my doctor's office one day last week, asking her why my legs were "jumping" and twitching uncontrollably. They told me I could come in at 11:30. I was there in 15 minutes. My son drove me, since I didn't feel like my legs would cooperate between moving from the gas to the brake pedal, and I might confuse the two and have a wreck.
So we sat in the lobby; I figured if I were going to die, I'd die right there in her waiting room, rather than at home. Her nurse took pity on me and said I could go to the back room and lie down, which I did. All the time, my legs were dancing to unheard music. I wondered if I could be having a seizure, and asked the nurse as she took my blood pressure and temp. At that moment, the doctor appeared. She checked me over and then shook her head, sighing, "We're going to take you on down to the ER. I don't know what's going on with you."
My PCP and I have become good friends thru the years. I have learned to ask questions, offer suggestions, and even sometimes remind her of how sensitive I am to some medications. This latest encounter was no exception. I told her I had recently started neurontin, at my rheumy's suggestion.
So I'm in the ER, still shaking like a leaf in a storm. Nurses and doctors bustle; questions asked and answered, mostly along the line of "where do you hurt?" and "are you allergic to anything?" And my answers: "I'm not really hurting. I just want the shaking to stop." And "No codeine, no phergan." I'm hooked up to an IV, an EKG is run, and I'm declared not having a heart attack....which I didn't think I was experiencing, anyway. Next came a kidney and lower abdomen scan; nothing found that could be causing my distress.
Upshot was, I was dismissed with prescriptions for Vicodin (which I despise and throw up immediately, so I discounted that suggestion) an anti-nausea med (which I filled) and -- heh -- an anti-anxiety med.
So they couldn't find anything wrong with this lady, so they decide I'm hysterical; I've been hyperventilating, so they'll just settle me down with an anti-anxiety med. I not only didn't fill that prescription, I trashed it.
Then I remembered: The neurontin had been in my system for about two weeks. It was working overtime on my nerves in my legs. I wouldn't take it any more, and see what happens.
So it's a week later. No more shaking in the legs. The neurontin is apparently gone from my system. So what now?
Now, I go back to the regularly scheduled appt. with the urologist, whom I had seen for what appeared to be a bladder/UTI infection that wouldn't go away. It was gone. Bladder scope shows nothing going on. Kidneys show up good on the ER scan. So nothing there. But I'm running a bit of a fever.
Infection somewhere. I normally run about a 97.6 temp, so to me, a "normal" 98.6 is a fever. The doctor, bless him, suggested there is an infection somewhere, not in my urinary tract, but somewhere, so he prescribes a low dose Macrobid daily for 30 days.
I sigh and take the prescription. It's worth a try.
This is the life of a lupus patient. Mysterious infections. Low grade fevers. Non-emergency ER visits. And a persistent feeling of "things just don't feel right." At times, sure, there are real emergency room visits. Real fevers. Real pain and fatigue.
Mostly, though, it's a constant, vague feeling of fatigue, fleeting bouts of mysterious pains and aches, urinary problems, some back pains, yada yada, yada. So quit complaining, Marilyn, I tell myself. You've been in worse shape.
Yeah, and I don't want to go there again. And that's why I complain.
<Lupus
Sunday, March 14, 2010
New Book Coming Along Nicely....
Which is more than I can say for this blog. I have to confess, I had soooo many blogs, I couldn't keep up. I had one for each of my 4 novels, plus My Ashes of Dead Lovers Garage Sale anthology, and one for my book about Military Brats (sequel to be published soon) and of course, this blog about my struggles with SLE.
So, I deleted all my blogs except this one, the Brat one, and I created an all-encompassing blog, Marilyn's Musings for posts about writing in general and an occasional rant or two. Or a dozen. Hopefully, I'll be able to keep up a little better with these 3 blogs.....
Now, for a bit about my recent encounters with the wolf..... I can't seem to have just a little cold. Oh, no, I have to have bronchitis, or a sinus infection. And lately, since Christmas, I've had a persistent UTI. (This may be a bit TMI for some readers, but I figure everybody knows everything about me by now, so damn the torpedoes. They might as well know about my urinary habits.) Pain. Cold chills. Nagging back pain occasionally. Went to primary PCP. Sure enough. UTI. Prescribed Cipro. Usually it works. This time, nada. Went back. Tested again. It's baaaaack. Another round of Cipro, pain, chills. Nada. Called the third time. Third round of Cipro. I innocently asked the PA, "Maybe we should try something else?" But, noooo, doctor doesn't want to overtreat. Heh. Third round did no good. This time she suggests I see a urologist.
Wonderful. I'm picturing myself in a waiting room full of impotent men who will elbow past me in their haste to get the little blue pill. But, maybe not. By this time -- it's been 3 months of this c**p and now I'm having -- ahem -- some urinary incontinence. Like when I cough or sneeze. Very embarrassing in public -- or heck, even here at home.
So, I'm wondering if this is part of lupus or just old age?
Anybody? Maybe I'll find out tomorrow after I see the urologist. If I don't get run over by those men with ED, that is.....
So, I deleted all my blogs except this one, the Brat one, and I created an all-encompassing blog, Marilyn's Musings for posts about writing in general and an occasional rant or two. Or a dozen. Hopefully, I'll be able to keep up a little better with these 3 blogs.....
Now, for a bit about my recent encounters with the wolf..... I can't seem to have just a little cold. Oh, no, I have to have bronchitis, or a sinus infection. And lately, since Christmas, I've had a persistent UTI. (This may be a bit TMI for some readers, but I figure everybody knows everything about me by now, so damn the torpedoes. They might as well know about my urinary habits.) Pain. Cold chills. Nagging back pain occasionally. Went to primary PCP. Sure enough. UTI. Prescribed Cipro. Usually it works. This time, nada. Went back. Tested again. It's baaaaack. Another round of Cipro, pain, chills. Nada. Called the third time. Third round of Cipro. I innocently asked the PA, "Maybe we should try something else?" But, noooo, doctor doesn't want to overtreat. Heh. Third round did no good. This time she suggests I see a urologist.
Wonderful. I'm picturing myself in a waiting room full of impotent men who will elbow past me in their haste to get the little blue pill. But, maybe not. By this time -- it's been 3 months of this c**p and now I'm having -- ahem -- some urinary incontinence. Like when I cough or sneeze. Very embarrassing in public -- or heck, even here at home.
So, I'm wondering if this is part of lupus or just old age?
Anybody? Maybe I'll find out tomorrow after I see the urologist. If I don't get run over by those men with ED, that is.....
Wednesday, December 30, 2009
Fun With Lupus?
Yep. We Lupies have to laugh or we'd be crying all the time. From brain fogs to falling like a drunk; from asserting ourselves with health care professionals and then sharing with others; from meds changing our moods and our weight.....we share our stories online and in lupus support groups world-wide.
While gathering material from others for publication in a new book, I have been touched to the point of tears at someone sharing her pain, frustration and feeling of "going crazy" and then a post arrives that sends me into much-needed belly-laughing.
One of the messages I read was from a fellow Lupie who was bemoaning the brain fog issue. For those who don't know what this is, (also called Lupus Lapse, or Brain Fart, or as somebody said her kids referred to it as The Thingy-Thing or What's Its Name, we find that we often blurt out words that have nothing to do with the object we are reaching for in our befuddled minds. I have been known to call a refrigerator a lampshade (causing my family to say HUH?) and refer to one of my grandchildren as "youngest kid" because the sweetie's name somehow eludes me. Sigh.
But the one I found the most hilarious was presented by another fellow on-line Lupie who said she was sitting with one of her children outside, admiring the flowers and butterflies. She intended to say, "pretty butterflies" and out of her mouth came the words: "Flying mushrooms."
I think I may have found a title for my new book: Life with Lupus and Flying Mushrooms.
<Lupus
While gathering material from others for publication in a new book, I have been touched to the point of tears at someone sharing her pain, frustration and feeling of "going crazy" and then a post arrives that sends me into much-needed belly-laughing.
One of the messages I read was from a fellow Lupie who was bemoaning the brain fog issue. For those who don't know what this is, (also called Lupus Lapse, or Brain Fart, or as somebody said her kids referred to it as The Thingy-Thing or What's Its Name, we find that we often blurt out words that have nothing to do with the object we are reaching for in our befuddled minds. I have been known to call a refrigerator a lampshade (causing my family to say HUH?) and refer to one of my grandchildren as "youngest kid" because the sweetie's name somehow eludes me. Sigh.
But the one I found the most hilarious was presented by another fellow on-line Lupie who said she was sitting with one of her children outside, admiring the flowers and butterflies. She intended to say, "pretty butterflies" and out of her mouth came the words: "Flying mushrooms."
I think I may have found a title for my new book: Life with Lupus and Flying Mushrooms.
<Lupus
Monday, December 7, 2009
Christmas Tree Up....Finally
I'm taking my own good advice about the holidays. I was in CA with my daughter and her family for Thanksgiving and came back with maybe a little flare.....certainly something to be expected. So far, so good; it's just a tired feeling and a little rash here and there. Itchy rash, raised and red. Not the shingles, thank goodness; I've had those several times and don't care to ever have them again. This rash isn't painful, just irritating.
So, being the traditionalist that I am, I got the tree out of storage and sorted through the boxes (yes, plural, boxes) of decorations. Overwhelmed by just putting the crystal and red cranberry garlands on the tree, I decided this year I would only have white decorations and angels. All unbreakable.
Except for the personalized "mouse in a stocking" ornaments given to me about 30 years ago by a sorority sister. A secret sister, so secret I don't even remember her name. But each year, the tradition has been for each child to hang his/her own mouse on the tree, and woe to anyone who dares hang his sister/brother's ornament. I've also designated certain ornaments as my grandchildren's personal ornaments, and they will hang them when they come over -- probably Christmas Eve.
We drew names this year for the adults; all the kids under 16 will get some little something -- I'm putting small items in their stockings -- saves wrapping, ya know. They always enjoy the bubbles, and each year I put chocolate covered cherries in one daughter's stocking. If I ever didn't do that, I think she might be really hurt.
So my point is, finally.....take it easy on yourself, too. Don't expend your energy where it's not absolutely required. My eldest niece, love her, is having the whole family for Christmas dinner. Of course, that's always been MY tradition, but we have to let go, finally, and allow the newer generation to have those honors.
It's a mixed blessing. Like so much in life.
If I don't post between now and Christmas, please know I wish everybody better health -- good health, even though that's asking old Santa a lot. If anybody can pull it off, he can!
<Lupus
<Holidays
So, being the traditionalist that I am, I got the tree out of storage and sorted through the boxes (yes, plural, boxes) of decorations. Overwhelmed by just putting the crystal and red cranberry garlands on the tree, I decided this year I would only have white decorations and angels. All unbreakable.
Except for the personalized "mouse in a stocking" ornaments given to me about 30 years ago by a sorority sister. A secret sister, so secret I don't even remember her name. But each year, the tradition has been for each child to hang his/her own mouse on the tree, and woe to anyone who dares hang his sister/brother's ornament. I've also designated certain ornaments as my grandchildren's personal ornaments, and they will hang them when they come over -- probably Christmas Eve.
We drew names this year for the adults; all the kids under 16 will get some little something -- I'm putting small items in their stockings -- saves wrapping, ya know. They always enjoy the bubbles, and each year I put chocolate covered cherries in one daughter's stocking. If I ever didn't do that, I think she might be really hurt.
So my point is, finally.....take it easy on yourself, too. Don't expend your energy where it's not absolutely required. My eldest niece, love her, is having the whole family for Christmas dinner. Of course, that's always been MY tradition, but we have to let go, finally, and allow the newer generation to have those honors.
It's a mixed blessing. Like so much in life.
If I don't post between now and Christmas, please know I wish everybody better health -- good health, even though that's asking old Santa a lot. If anybody can pull it off, he can!
<Lupus
<Holidays
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