Yesterday I had an appt. with my primary care physician. Yearly checkup.
I sat in that lovely paper gown for a few moments before the nurse came in and entered some information into the computer file on Morris, Marilyn 04/21/1938. We went over all my medications, which I had brought with me, and then she took my blood pressure and temperature. Everything okay there. So far, so good.
Then the doctor came in and she proceeded to check me over. I asked her about a small mole on my right arm; she looked at it with a light and then said it was nothing to worry about. So far, so good, there.
No flu shot, please, I said. She agreed.
Then she looked in my mouth. Oh, man. She stepped back in surprise. "You've got a lot of dental work in front of you."
I told her, "I'm just going to get dentures. It's cheaper than implants." She nodded. "It's the Sjogren's, isn't it?" And I told her my dentist said within six months to a year, I would have no teeth left. And after implants he wanted to do, I would have no money left: $60,000.00.
Besides, Sjogren's would make short work of whatever teeth I had implants.
So the search is on for a good dentist who will make my dentures. According to one of the women I used to work with, during a brunch conversation on Friday, she told me about a woman in her office who had her teeth pulled, with no general anesthesia, dentures put in place, and the next day she was back at work.
That sounds good to me. I can take the pain; Lord knows we Lupies are accustomed to pain.
I think I'm going next week. Wish me luck......
Wednesday, October 24, 2012
Friday, September 28, 2012
Sjogren's: An evil twin to Lupus
Isn't it enough that I have SLE (systemic lupus erythematosus ) CHF, (congestive heart failure) Asthma and various and sundry offshoots of those primary diseases/syndromes, that now I have to take a real hard look at Sjogren's and what it has been doing to my body?
More specifically, to my mouth. Dry mouth. I sip on something all day, spray my mouth often with the remedy for dry mouth, which lasts oh, maybe four minutes, and I cannot cry. I mean, I cannot produce tears. I use eye drops several times a day, a brand that is used especially for dry eyes.
So it was no surprise when I went to my new dentist. My former dentist and I had a falling out; mainly it was his staff who got sideways with my daughter, who pays my dental bills. Long story. Essentially, I went to see another dentist. I had lost a tooth....in the front, top. Where it's visible. I look like Granny Clampett.
I asked him if he could re-insert the tooth, and he shook his head. Nothing to attach it to. We talked implants for a while.
After a thorough exam, and a scan like an MRI, he gave me the bad news. Every tooth in my mouth has cavities. Every. Single. Tooth. So I suggested that maybe he could fit me with dentures. Get the whole thing over with. Okey, Dokey. He worked up an estimate, or two, really: $60,000.00 or $80,00.00.
Before we sent the estimate to my daughter in CA, we did some Internet searching for places who make dentures. Every step is itemized on those sites.
I quickly realized that it's not as easy a process as it had seemed. And my new dentist had warned me about patients who had insisted on dentures, and a week later, they were back saying, "I don't like these one bit." Of course, he was looking more at implants and bridges.
I did appreciate him telling me, after he had decreed all my teeth were "hole-y" it wasn't my fault. Nothing that I did or didn't do caused my teeth to be in danger of crumbling, right before my very eyes.
So, right now, I'm in a holding pattern, waiting for the next tooth to drop. Which it will, very soon. New dentist had told me that within six months to a year, all my teeth would be gone. Lovely.
Bad enough I have a missing tooth on top, next to my new crowns bonded together for strength, as I kept losing the temporary crowns and the dental techs scolded me about "not being careful" as they re-inserted the temporary crowns each time. I even bought some denture adhesive to keep them in, but they still fell out.
My self-esteem has taken a nose dive, for sure. I had a good smile, darn it. Now I've got a gaping hole where a nice white tooth had been. I'm convinced I look like a hillbilly who has been drinking too much Mountain Dew (said by some to be Hillbilly Heroin).
One good thing: I have good bones. Long ago, I had bridges on both sides of the bottom teeth, which were badly done and infection deemed it necessary to remove them. That was when I had dental insurance from my workplace. Unfortunately, Medicare doesn't provide any dental coverage. So, essentially, I've been gumming my food for years without any ill effects.
TMI, I"m sure. Too much information about the dental issues I've been encountering, right? But, I suppose I'm really asking for validation, or dire warnings from all my lupus buddies.
If you were this 74 year old woman with lupus, etc. would you want to take any of the measures mentioned above?
Every so often, I think, Why bother? Let the teeth fall where they may, so to speak. Buy a heavy duty blender and eat mush. Somehow, somewhere, a bit of pride intrudes and says I'm worth it. Even if they plant me the day after I get my dentures, by golly, I've taken care of myself.
This week, in a message to someone on the online lupus support group, I quoted M. Scott Peck's opening line in his book that changed my life: The Road Less Traveled.... Life is difficult.
Yes, it is. I have to keep remembering that.
More specifically, to my mouth. Dry mouth. I sip on something all day, spray my mouth often with the remedy for dry mouth, which lasts oh, maybe four minutes, and I cannot cry. I mean, I cannot produce tears. I use eye drops several times a day, a brand that is used especially for dry eyes.
So it was no surprise when I went to my new dentist. My former dentist and I had a falling out; mainly it was his staff who got sideways with my daughter, who pays my dental bills. Long story. Essentially, I went to see another dentist. I had lost a tooth....in the front, top. Where it's visible. I look like Granny Clampett.
I asked him if he could re-insert the tooth, and he shook his head. Nothing to attach it to. We talked implants for a while.
After a thorough exam, and a scan like an MRI, he gave me the bad news. Every tooth in my mouth has cavities. Every. Single. Tooth. So I suggested that maybe he could fit me with dentures. Get the whole thing over with. Okey, Dokey. He worked up an estimate, or two, really: $60,000.00 or $80,00.00.
Before we sent the estimate to my daughter in CA, we did some Internet searching for places who make dentures. Every step is itemized on those sites.
I quickly realized that it's not as easy a process as it had seemed. And my new dentist had warned me about patients who had insisted on dentures, and a week later, they were back saying, "I don't like these one bit." Of course, he was looking more at implants and bridges.
I did appreciate him telling me, after he had decreed all my teeth were "hole-y" it wasn't my fault. Nothing that I did or didn't do caused my teeth to be in danger of crumbling, right before my very eyes.
So, right now, I'm in a holding pattern, waiting for the next tooth to drop. Which it will, very soon. New dentist had told me that within six months to a year, all my teeth would be gone. Lovely.
Bad enough I have a missing tooth on top, next to my new crowns bonded together for strength, as I kept losing the temporary crowns and the dental techs scolded me about "not being careful" as they re-inserted the temporary crowns each time. I even bought some denture adhesive to keep them in, but they still fell out.
My self-esteem has taken a nose dive, for sure. I had a good smile, darn it. Now I've got a gaping hole where a nice white tooth had been. I'm convinced I look like a hillbilly who has been drinking too much Mountain Dew (said by some to be Hillbilly Heroin).
One good thing: I have good bones. Long ago, I had bridges on both sides of the bottom teeth, which were badly done and infection deemed it necessary to remove them. That was when I had dental insurance from my workplace. Unfortunately, Medicare doesn't provide any dental coverage. So, essentially, I've been gumming my food for years without any ill effects.
TMI, I"m sure. Too much information about the dental issues I've been encountering, right? But, I suppose I'm really asking for validation, or dire warnings from all my lupus buddies.
If you were this 74 year old woman with lupus, etc. would you want to take any of the measures mentioned above?
Every so often, I think, Why bother? Let the teeth fall where they may, so to speak. Buy a heavy duty blender and eat mush. Somehow, somewhere, a bit of pride intrudes and says I'm worth it. Even if they plant me the day after I get my dentures, by golly, I've taken care of myself.
This week, in a message to someone on the online lupus support group, I quoted M. Scott Peck's opening line in his book that changed my life: The Road Less Traveled.... Life is difficult.
Yes, it is. I have to keep remembering that.
Thursday, August 30, 2012
Another Gift from Lupus
As if having a brain fog and injecting 70 units of Humalog, instead of 70 units of Lantus, going to the ER and having the result of my body and brain going AWOL for several days, I added a new situation: I lost a tooth.
Now, little kids look cute when they have lost their baby teeth, and have that charming little smile. But I'm an adult, and my smile makes me look like a hillbilly.
Sure, the tooth would be one that showed any time I smile or open my mouth to speak. Blame my dry mouth syndrome on Sjogren's, which a lot of people with lupus have added to their full plate. No kidding, I didn't even suspect that tooth was going to make a swan dive very soon. I bit into one of those trail mix bars, chock full of nuts, raisins and chocolate...very soft and "smushy" so I know I hadn't bitten into anything hard.
Fortunately, I found the errant tooth, still in my mouth surrounded by the chocolate, nuts and raisins. I called my new dentist and asked if I could have the dentist look at it and see what we can do. I already had an appointment for a cleaning, anyway. So she asked if I could come in at 7:30 AM. Normally I wouldn't have accepted that early an appointment, but my vanity got the best of me.
In the meantime, it's a mean time.
I didn't put the tooth under my pillow for the Tooth Fairy.
Now, little kids look cute when they have lost their baby teeth, and have that charming little smile. But I'm an adult, and my smile makes me look like a hillbilly.
Sure, the tooth would be one that showed any time I smile or open my mouth to speak. Blame my dry mouth syndrome on Sjogren's, which a lot of people with lupus have added to their full plate. No kidding, I didn't even suspect that tooth was going to make a swan dive very soon. I bit into one of those trail mix bars, chock full of nuts, raisins and chocolate...very soft and "smushy" so I know I hadn't bitten into anything hard.
Fortunately, I found the errant tooth, still in my mouth surrounded by the chocolate, nuts and raisins. I called my new dentist and asked if I could have the dentist look at it and see what we can do. I already had an appointment for a cleaning, anyway. So she asked if I could come in at 7:30 AM. Normally I wouldn't have accepted that early an appointment, but my vanity got the best of me.
In the meantime, it's a mean time.
I didn't put the tooth under my pillow for the Tooth Fairy.
Tuesday, August 28, 2012
Some Lupies Have Diabetes, Too....
On Saturday night, I took my usual dose of 70 units of Lantus. At least, I thought I had taken Lantus. As I was putting the vial back in the refrigerator, I looked at the vial in horror....NOT Lantus, which is a slow release for me at night. It was Humalog, that I take in the daytime before a meal, if necessary. And on a sliding scale, per my doctor's instructions.
So, what do I need to do?
I told my son what I had done. He suggested I call the pharmacist where I get my meds. The pharmacy was closed. So I asked the friendly kid who answered the phone for another one that stayed open all night.
So I called one of the two choices, and held and held.....finally the pharmacist came on the line and after telling her of my predicament, she said, "Don't go to sleep. Take your blood glucose every two hours; if it's low, eat something with carbs, protein and sugar."
By that time, the extra strength dose had hit my body, hard. I began shaking and sweating, the usual reaction to low blood sugar. But I had no idea how long this would last, since I had taken such a large dose.
Meanwhile, my son had done an Internet search and one of the instructions was to go to my friendly neighborhood ER.
So off we went.
This was about 8:30 PM. A nurse took all my vital signs and installed a port if we needed to do any infusions. She input all the info into the computer and then said the doctor would be in shortly.
The doctor was a young woman (at my age, all doctors are young) who reassured me; this happens sometimes, and it was a good thing I had done to come to the ER. They took my reading every two hours, and on the last two hour stretch, someone came in bearing a turkey sandwich with a bag of potato chips and a glass of water. I was told to eat all of it. Which I did.
And two hours after that little snack, my glucose was up to a normal level. I could go home. It was now past 2:00 a.m.
I went to bed and slept until 9 a.m. I felt like I had been hit by a truck. A very large truck. I read the printout Woody had looked up, and the gist of the post was to do essentially nothing for the next couple of days.
That's almost against my religion. I know that I should rest more with a lupus flare, but I resist every time. Besides feeling beaten up, my brain reverted to its former status: Brain fog. This was Sunday.
Surely I would feel better the next day, I rationalized.
Nope. On Monday, I managed to get out of bed, but I still felt lousy, this time more of a brain dysfunction than physical.
Now, it's Tuesday, and I feel better, all things considered. Even my brain fog shows it's fading away.
The moral to this story is: Always, always, look at the label on the medication. In fact, someone on my lupus support group, a former nurse, told me she was trained to look at the label three times....First, when retrieving the med from its storage place. Second, preparing to inject, and third, after drawing up the amount to be injected.
And another precaution: my diabetes medications are now in color-coded, different sized holders in the refrigerator. So far, I have had only a couple of occasions to inject the Humalog, and Lantus in the evening, which I cut back from 70 units to 50.
Mission accomplished.
So, what do I need to do?
I told my son what I had done. He suggested I call the pharmacist where I get my meds. The pharmacy was closed. So I asked the friendly kid who answered the phone for another one that stayed open all night.
So I called one of the two choices, and held and held.....finally the pharmacist came on the line and after telling her of my predicament, she said, "Don't go to sleep. Take your blood glucose every two hours; if it's low, eat something with carbs, protein and sugar."
By that time, the extra strength dose had hit my body, hard. I began shaking and sweating, the usual reaction to low blood sugar. But I had no idea how long this would last, since I had taken such a large dose.
Meanwhile, my son had done an Internet search and one of the instructions was to go to my friendly neighborhood ER.
So off we went.
This was about 8:30 PM. A nurse took all my vital signs and installed a port if we needed to do any infusions. She input all the info into the computer and then said the doctor would be in shortly.
The doctor was a young woman (at my age, all doctors are young) who reassured me; this happens sometimes, and it was a good thing I had done to come to the ER. They took my reading every two hours, and on the last two hour stretch, someone came in bearing a turkey sandwich with a bag of potato chips and a glass of water. I was told to eat all of it. Which I did.
And two hours after that little snack, my glucose was up to a normal level. I could go home. It was now past 2:00 a.m.
I went to bed and slept until 9 a.m. I felt like I had been hit by a truck. A very large truck. I read the printout Woody had looked up, and the gist of the post was to do essentially nothing for the next couple of days.
That's almost against my religion. I know that I should rest more with a lupus flare, but I resist every time. Besides feeling beaten up, my brain reverted to its former status: Brain fog. This was Sunday.
Surely I would feel better the next day, I rationalized.
Nope. On Monday, I managed to get out of bed, but I still felt lousy, this time more of a brain dysfunction than physical.
Now, it's Tuesday, and I feel better, all things considered. Even my brain fog shows it's fading away.
The moral to this story is: Always, always, look at the label on the medication. In fact, someone on my lupus support group, a former nurse, told me she was trained to look at the label three times....First, when retrieving the med from its storage place. Second, preparing to inject, and third, after drawing up the amount to be injected.
And another precaution: my diabetes medications are now in color-coded, different sized holders in the refrigerator. So far, I have had only a couple of occasions to inject the Humalog, and Lantus in the evening, which I cut back from 70 units to 50.
Mission accomplished.
Thursday, August 16, 2012
Grieving
| On
Tuesday evening, I had dinner with a good friend. This lady is strong
as vinegar; been through so much in her life, yet she maintains an air
of serenity and dignity. Until Tuesday evening. She said, "I'm not in a very good spiritual condition lately." Hmmm. That's just what I posted on the Lupies site the other day....I think. I told her I would listen, as I had no words of wisdom to give to her; no advice. Just listen with my heart. Two of our mutual friends are gone from our lives....hers more than mine, friends, I mean. Our friend Tina died of pneumonia in the hospital; we attended her funeral about a month ago. Another friend, Nancy, has been bundled up and flown to MD, by her kids, as they are afraid of her growing Alzheimer's. We probably won't see her again, if her kids have anything to do with it. (Snort.) So, what's been brewing in my muddled mind is: We're both grieving over our recent losses, and I'll add one more item: Grief about growing old-er. Nothing I can do about that. But I hate the "infirmities" of old-er age. My friend likes to sit in a booth, but man, how hard it was for me to haul my butt out of the booth. I'll have to remember I suggest a table next time we go eat together. We used to go places at the drop of a hat, excited about antique -ing. Finding new places along the road. Now, I have to consider how I'm doing that day -- never mind planning in advance. What I think is going on with both of us is not so much grieving over the loss of our friends, but also grieving over our former selves. And here I thought I had done that already! But with lupus, when it sneaks back like a thief in the night, I get blind-sided. Again, I have to go through the grieving process. And that sucks. |
__._,_.___
|
Tuesday, July 24, 2012
Book Title
I'm often asked how I choose the absolutely correct title for my books. This book about lupus is no different.
I wrestled with several phrases, all of which sounded not quite right."Living with Lupus" sounds lame, and I'm sure there are several books out there with that title. (Note to reader: Titles are NOT copyrighted. Anyone can publish any book with the title: Gone With the Wind, or To Kill a Mockingbird. Of course, any astute reader would recognize the rip-off right away. So that's not too common a practice.)
"Life in the Lupus Lane" was also considered, then aside.
Other titles with great alliteration followed, although I can't remember them right now. That's how memorable they were.
Finally, my publisher came through with the perfect title. Somebody at some point said, or wrote, "Life isn't fair. You have to play the hand you're dealt." That led to "The Cards We're Dealt."
Perfect. That describes lupus perfectly.
I wrestled with several phrases, all of which sounded not quite right."Living with Lupus" sounds lame, and I'm sure there are several books out there with that title. (Note to reader: Titles are NOT copyrighted. Anyone can publish any book with the title: Gone With the Wind, or To Kill a Mockingbird. Of course, any astute reader would recognize the rip-off right away. So that's not too common a practice.)
"Life in the Lupus Lane" was also considered, then aside.
Other titles with great alliteration followed, although I can't remember them right now. That's how memorable they were.
Finally, my publisher came through with the perfect title. Somebody at some point said, or wrote, "Life isn't fair. You have to play the hand you're dealt." That led to "The Cards We're Dealt."
Perfect. That describes lupus perfectly.
Wednesday, July 18, 2012
Hope I Can Remain Lupus-Flare Free
I'm going to attend a writer's conference on Saturday. For the past few days, I've been gathering up materials to haul into the venue so I can (a) take notes during speakers' presentations, and (b) sell my books in the Author's Bookstore. Of course, I don't have all my books here at home; some are "out of stock" meaning I haven't ordered any new books in a while. So I'll have to do with Sabbath's Gift, Sabbath's House, Forces of Nature and two or three copies of The Cards We're Dealt.
I've also created a three-page "flyer" to insert in each book, listing all my books, along with a business card.
So I'm taking things slowly, being organized, so I won't have to rush around on Friday night, looking for things.
Yet I'm a bit apprehensive. It's about a 40 minute drive, in heavy traffic, and I need to register around 8:00 AM. Knowing my body as I do, I will arrive kind of frazzled from doing battle with other cars/trucks/buses on the Interstate.
Then there comes the setting up of my books in The Bookstore at the venue, where I don't have to be there to sell my books; instead, others will be present to take the credit cards/money, etc, so I can feel free to attend the speakers' presentations.
So far, what's the problem? I hear you ask.
Well, I'm the kind of person who goes "all out" in learning something from a writers conference. Talking to others "of my kind" (authors) is a real "high" for me, with my adrenalin running a marathon through my body. I concentrate so thoroughly it's a wonder my head doesn't explode.
So I'll focus, focus, focus. Leave one meeting room for a presentation in another. Then lunch, then more meetings, presentations, until evening, when I pack up my books and head home.
I'll be shaking with fatigue. I know that ahead of time. Last Saturday was no exception, as I enjoyed myself thoroughly at a readers group tea. Books were traded and I came home with six. So many books, so little time. I shook all the way home and when I finally got into the house, I peeled off my clothes and put on my nightgown. Bedtime was very early.
So, this is my plan for Saturday. Prepare ahead of time, expect the traffic to be horrible, focus on all the presentations, meet other authors and wanna-be authors, enjoy myself and then pack up and head home.
No doubt I'll be shaking about half-way through the conference. Not visibly, no. Just an unsteadiness on my feet (note to self: wear sturdy shoes. To heck with trying to look fashionable.) and an inner trembling that gets my attention. I'll come home, peel off my clothes and put on my nightgown. Bedtime very early.
Not exactly a writer's glamorous life, huh?
But I wouldn't miss it for the world. "Ya pays your money and ya takes your choice." I'm prepared to pay for this adventure with a couple of days of feeling lousy and fatigued.
That's the way my lupie world works. How about yours?
I've also created a three-page "flyer" to insert in each book, listing all my books, along with a business card.
So I'm taking things slowly, being organized, so I won't have to rush around on Friday night, looking for things.
Yet I'm a bit apprehensive. It's about a 40 minute drive, in heavy traffic, and I need to register around 8:00 AM. Knowing my body as I do, I will arrive kind of frazzled from doing battle with other cars/trucks/buses on the Interstate.
Then there comes the setting up of my books in The Bookstore at the venue, where I don't have to be there to sell my books; instead, others will be present to take the credit cards/money, etc, so I can feel free to attend the speakers' presentations.
So far, what's the problem? I hear you ask.
Well, I'm the kind of person who goes "all out" in learning something from a writers conference. Talking to others "of my kind" (authors) is a real "high" for me, with my adrenalin running a marathon through my body. I concentrate so thoroughly it's a wonder my head doesn't explode.
So I'll focus, focus, focus. Leave one meeting room for a presentation in another. Then lunch, then more meetings, presentations, until evening, when I pack up my books and head home.
I'll be shaking with fatigue. I know that ahead of time. Last Saturday was no exception, as I enjoyed myself thoroughly at a readers group tea. Books were traded and I came home with six. So many books, so little time. I shook all the way home and when I finally got into the house, I peeled off my clothes and put on my nightgown. Bedtime was very early.
So, this is my plan for Saturday. Prepare ahead of time, expect the traffic to be horrible, focus on all the presentations, meet other authors and wanna-be authors, enjoy myself and then pack up and head home.
No doubt I'll be shaking about half-way through the conference. Not visibly, no. Just an unsteadiness on my feet (note to self: wear sturdy shoes. To heck with trying to look fashionable.) and an inner trembling that gets my attention. I'll come home, peel off my clothes and put on my nightgown. Bedtime very early.
Not exactly a writer's glamorous life, huh?
But I wouldn't miss it for the world. "Ya pays your money and ya takes your choice." I'm prepared to pay for this adventure with a couple of days of feeling lousy and fatigued.
That's the way my lupie world works. How about yours?
Tuesday, July 3, 2012
Independence Day
So you say you have lupus and can't go out in the sun? What to do instead? If you're in N Central Texas where a 95 degree high is considered a cool front, you'll want to stay in under the air conditioning. And pray it holds itself together until say, November, when most of us switch to "heat."
But I wanna go to the lake with everybody, I hear somebody whining. (We do that a lot, you know. Lupies are allowed to whine, at least to each other.) Fine. Go, with my blessings. Just don't forget your broad-brimmed hat, your sun block, wear long sleeves and long pants, and try to stay away from the lake or other body of water. I learned the hard way when I went to the beach with my daughter in CA. I wore long pants, long sleeves, a broad-brimmed hat and sun screen. I sat under a big beach umbrella.
So imagine my surprise when I discovered later that day that I had broken out into a very bad rash. Not a sunburn, but a rash. Too much sun. Huh? I learned a bit too late that even if you're covered up, protected as much as you can be, the sun shining on the sandy beach and/or the lake or ocean, reflects back on you, the body who is trying to do everything right.
So I hope you have a wonderful Independence Day, but be careful out there. Me? I'm staying inside the air conditioned house.
But I wanna go to the lake with everybody, I hear somebody whining. (We do that a lot, you know. Lupies are allowed to whine, at least to each other.) Fine. Go, with my blessings. Just don't forget your broad-brimmed hat, your sun block, wear long sleeves and long pants, and try to stay away from the lake or other body of water. I learned the hard way when I went to the beach with my daughter in CA. I wore long pants, long sleeves, a broad-brimmed hat and sun screen. I sat under a big beach umbrella.
So imagine my surprise when I discovered later that day that I had broken out into a very bad rash. Not a sunburn, but a rash. Too much sun. Huh? I learned a bit too late that even if you're covered up, protected as much as you can be, the sun shining on the sandy beach and/or the lake or ocean, reflects back on you, the body who is trying to do everything right.
So I hope you have a wonderful Independence Day, but be careful out there. Me? I'm staying inside the air conditioned house.
Monday, June 25, 2012
Lupus and Diabetes ....
Not a good combination. Both are autoimmune disorders, and I have difficulty dealing with just one, let alone two. Right now, I'm trying to get my glucose readings down to a reasonable level, before I go to the endocrinologist's office in July.
Now, I'm a reasonably intelligent woman, although math has always remained a mystery, but I know my glucose is too high, most of the time. I've been chastised by some members of an online support group, and it stings. Too many carbs. Taking your glucose readings at inappropriate times. I will plead guilty to the carbs charge. I lust for a good piece of bread (preferably still warm from the oven) and a baked potato, loaded. And last night, I was sucked into a Lay's Potato Chip commercial. Wanted a bag full. Fortunately, had none in the pantry. The moment passed, and I was okay.
There are many more things I could concentrate on, other than figure out how to get lower readings. Like keep writing on my latest novel. Like watching a great episode on History International about Ancient Aliens. Like driving to the YMCA for a water aerobics class.
I'm not making excuses. I've done that before, and didn't even fool myself. It's like dieting. I don't want to do another diet, since I've never stuck to one at any time. And, at my age, I don't have too many pleasures left in life, and by golly, good food is one that's left.
I think I can modify my diet plan, step by step. No Jenny Craig, Weight Watchers, etc. for me. Just eliminate one forbidden food at a time until it becomes a habit. Day by day, step by step. It's a process, not an event.
Now, I'm a reasonably intelligent woman, although math has always remained a mystery, but I know my glucose is too high, most of the time. I've been chastised by some members of an online support group, and it stings. Too many carbs. Taking your glucose readings at inappropriate times. I will plead guilty to the carbs charge. I lust for a good piece of bread (preferably still warm from the oven) and a baked potato, loaded. And last night, I was sucked into a Lay's Potato Chip commercial. Wanted a bag full. Fortunately, had none in the pantry. The moment passed, and I was okay.
There are many more things I could concentrate on, other than figure out how to get lower readings. Like keep writing on my latest novel. Like watching a great episode on History International about Ancient Aliens. Like driving to the YMCA for a water aerobics class.
I'm not making excuses. I've done that before, and didn't even fool myself. It's like dieting. I don't want to do another diet, since I've never stuck to one at any time. And, at my age, I don't have too many pleasures left in life, and by golly, good food is one that's left.
I think I can modify my diet plan, step by step. No Jenny Craig, Weight Watchers, etc. for me. Just eliminate one forbidden food at a time until it becomes a habit. Day by day, step by step. It's a process, not an event.
Thursday, May 24, 2012
Video on You Tube
A friend on my lupus support group, lupies@yahoogroups.com
has created a video and has included a promo of my book, The Cards We're Dealt.
I am so proud of her.
Link is here:
http://youtu.be/4sBFapkq7Nk
has created a video and has included a promo of my book, The Cards We're Dealt.
I am so proud of her.
Link is here:
http://youtu.be/4sBFapkq7Nk
Tuesday, May 1, 2012
Well, DUH!
I've been sick with an upper respiratory infection and I'm tired of it, now. It's been 10 days of antibiotics twice a day and Mucinex DM every 4 hours (If you get the Walgreen's brand) or every 12 hours (costs more, but is worth it.)
So between hacking and coughing and trying not to get my asthma going, I've been pretty miserable. I couldn't figure out why it was taking so long to get rid of this mess.
And then it dawned on me.....Of course. I have lupus. DUH. Since my immune system is busy fighting other areas of my body, it won't pay attention to anything else. Now, I've had lupus since 1988. Been there, done most of that. Chemotherapy via Imuran and Cytoxan at one point. Prednisone and Plaquenil, now. All automatic, morning ritual, without giving it a thought.
So when I came down with this hacking cough, I acted like any "normal" person would....focus on the congestion. Went to the doctor who prescribed anti-biotics for ten days. Took the last one yesterday. Why am I not well yet?
Heh. Lupus is still alive and well running amock in my tired old body.
That's why.
But I'll be better tomorrow.
So between hacking and coughing and trying not to get my asthma going, I've been pretty miserable. I couldn't figure out why it was taking so long to get rid of this mess.
And then it dawned on me.....Of course. I have lupus. DUH. Since my immune system is busy fighting other areas of my body, it won't pay attention to anything else. Now, I've had lupus since 1988. Been there, done most of that. Chemotherapy via Imuran and Cytoxan at one point. Prednisone and Plaquenil, now. All automatic, morning ritual, without giving it a thought.
So when I came down with this hacking cough, I acted like any "normal" person would....focus on the congestion. Went to the doctor who prescribed anti-biotics for ten days. Took the last one yesterday. Why am I not well yet?
Heh. Lupus is still alive and well running amock in my tired old body.
That's why.
But I'll be better tomorrow.
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!
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
Thyroid?
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?
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
Available in print and ALL eBook formats:
http://www.vanillaheartbooksandauthors.com/Writings .html
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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.
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.
Lupus
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.
Lupus
Thursday, February 16, 2012
Looking for help with another autoimmune disease
Well, yeah. I also have diabetes, I think type 1, since I have to take insulin. Recently, I've had some insight as to how my diabetes really needs to get under control. Yet, I have only some vague idea about how to do that, since I'm not sure about being a type 1, type 1.5, or even type 2 that has morphed into a type 1.
I'm getting a headache with all this information. A normal person would probably ask her physician. Heh. Whoever said I was "normal?" I've got some info from Lupies in my yahoo group, who tell me one thing, and recently I joined a diabetes yahoo group which tells me another.
All I know is, I had diabetes controlled by meds (type 2) until I went into the hospital in 2004 and darn near died from God knows what (still no diagnosis as to what nearly took my life) and when I came out of Intensive Care, I noticed they were treating me with insulin injections. So I've called myself a Type 1, insulin dependent diabetic.
Lupus is an autoimmune disease, and so is diabetes. My thinking is, two autoimmune diseases, and how do I control my blood glucose when lupus is kicking my butt? And, this last week, I've had to take a Medrol Dosepak, which put my glucose readings waaaay up there.
Stress also increases both my lupus condition and diabetes, so go figure. I try not to get stressed, but when your life is ruled by numbers on a test strip, it's hard not to freak out when I see the numbers that are too darn high.
If anybody has a clue, let me know. Meantime, I'll ask my endocrinologist when I see him next week. I just hate going to get my A1C beforehand.
Lupus
diabetes
I'm getting a headache with all this information. A normal person would probably ask her physician. Heh. Whoever said I was "normal?" I've got some info from Lupies in my yahoo group, who tell me one thing, and recently I joined a diabetes yahoo group which tells me another.
All I know is, I had diabetes controlled by meds (type 2) until I went into the hospital in 2004 and darn near died from God knows what (still no diagnosis as to what nearly took my life) and when I came out of Intensive Care, I noticed they were treating me with insulin injections. So I've called myself a Type 1, insulin dependent diabetic.
Lupus is an autoimmune disease, and so is diabetes. My thinking is, two autoimmune diseases, and how do I control my blood glucose when lupus is kicking my butt? And, this last week, I've had to take a Medrol Dosepak, which put my glucose readings waaaay up there.
Stress also increases both my lupus condition and diabetes, so go figure. I try not to get stressed, but when your life is ruled by numbers on a test strip, it's hard not to freak out when I see the numbers that are too darn high.
If anybody has a clue, let me know. Meantime, I'll ask my endocrinologist when I see him next week. I just hate going to get my A1C beforehand.
Lupus
diabetes
Thursday, January 26, 2012
It's always something....
Recently, I've discovered various lumps, bumps and humps on my poor body...No cracks, now, about my age.....this is not just old age. I found.most glaringly, a cyst on my left hand.
Upshot was, after consulting with my PCP, she recommended I see a hand surgeon. Okay. Hand surgeon (I resisted the somewhat gnarly comment about seeing a "left hand surgeon.") took xray to make sure my bones/joints weren't involved, and then he suggested this could be due to past steroid use. Heh. Of course I've had steroid use in the past. All lupus patients do. So what to treat this cyst with?
Why, more steroids, of course. And a splint so I wouldn't use those fingers as much and give my hand a rest.
Well, the cyst faded away, of course, but .....You just knew there would be a "but" didn't you?
I came up with a cyst on my breastbone. More specifically, right below my breastbone.
Back to my PCP. Just to make sure it was just a cyst. Too close to breast tissue for me to ignore it.
She agreed, after a brief examination: "A cyst. And it's not impinging on breast tissue, so let's just watch it and it might just go away."
I agreed. And it's gone away.
But I'm sure it will pop up again, somewhere.
Come to think of it: A couple of years ago, my PCP found a lump in my left breast. Probably nothing, but she sent me to a breast surgeon. This surgeon sent me for an aspiration of the lump.....I watched as the needle went in and sucked out what was essentially, fluid and "junk." Then the contents were sent for exam. It was recommended I have the cyst removed and biopsied. Everything came out just fine. No malignancy. Just a fluid filled cyst.
And that was the beginning of this little series of events.
Can't wait to see where another one will pop up......
Never a dull moment with lupus.
Lupus
Upshot was, after consulting with my PCP, she recommended I see a hand surgeon. Okay. Hand surgeon (I resisted the somewhat gnarly comment about seeing a "left hand surgeon.") took xray to make sure my bones/joints weren't involved, and then he suggested this could be due to past steroid use. Heh. Of course I've had steroid use in the past. All lupus patients do. So what to treat this cyst with?
Why, more steroids, of course. And a splint so I wouldn't use those fingers as much and give my hand a rest.
Well, the cyst faded away, of course, but .....You just knew there would be a "but" didn't you?
I came up with a cyst on my breastbone. More specifically, right below my breastbone.
Back to my PCP. Just to make sure it was just a cyst. Too close to breast tissue for me to ignore it.
She agreed, after a brief examination: "A cyst. And it's not impinging on breast tissue, so let's just watch it and it might just go away."
I agreed. And it's gone away.
But I'm sure it will pop up again, somewhere.
Come to think of it: A couple of years ago, my PCP found a lump in my left breast. Probably nothing, but she sent me to a breast surgeon. This surgeon sent me for an aspiration of the lump.....I watched as the needle went in and sucked out what was essentially, fluid and "junk." Then the contents were sent for exam. It was recommended I have the cyst removed and biopsied. Everything came out just fine. No malignancy. Just a fluid filled cyst.
And that was the beginning of this little series of events.
Can't wait to see where another one will pop up......
Never a dull moment with lupus.
Lupus
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