I make no secret of my age, or my medical condition(s). My best friends know what to expect when we get together, and we try very hard to avoid having an "organ recital." One friend has heart problems, and the other has pulmonary hypertension. Yet we persist.
My recent diagnosis of "benign essential tremors" is being added to my list of medical conditions. The prescription med seems to be working, for the most part. We'll see if my neurologist wants to bump it up to 100 mg. from the 50mg I started on a couple of weeks ago. I vote yes.
So I guess I'm asking, what kind of energy level should I expect from a "normal" (heh) 75 year old woman? I look at my 93 year old mother, still going strong, despite a couple of heart attacks and a recent fall. I think I'm following her example by looking at my own medical history and thinking of it as just a nuisance.
Granted, I move slower than I did a couple of years ago. That's because I can't trust my balance very much lately. I used to see "older" people shuffle along and wondered why they did that. Now I know: they don't want to fall, either.
I have a cane and a walker. I've been encouraged to use them, both or one, whichever one I feel more comfortable with. These devices were acquired when I had vasculitis in my ankles some years ago, and I really did need them. I was working as a "temp" and used my cane. Another time, I felt more comfortable using my walker.
I was talking to one of my friends the other day about my concerns, and she said, "Use your cane; I have one."
I thought about it for a minute, and then countered with: "I'll see your cane and raise you my walker."
Gotta laugh to keep from crying.
Sunday, September 15, 2013
Sunday, September 8, 2013
Issues with Self-Publishing While I Have Lupus.
Stress, in its latest form, came calling this morning. A couple of weeks ago, I was diagnosed with "benign essential tremors" by a neurologist who assured me that it was treatable and the prescription for its treatment was an older, cheaper drug that I start with one 50 mg Primidone at bedtime. Next week, we'll see at my follow-up appt. whether I need to increase the dosage. I vote for "yes."
Since this latest "gift" of lupus thrives on stress, I have to make some decisions, here, about my writing career.
I have recently "fired" my publisher, Vanilla Heart Publishing, for breach of contract on many levels, along with 12 of my fellow authors in that publishing house. That's a stressor of major proportions, and not quite by coincidence, that's when my stress level increased to the point that I had to find out what was going on with my lupus. Heh. You might say I'm brain damaged, since the cause of these tremors is that nerves in my CNS are on overdrive; coming out of my overactive, stressed brain.
I have been trying to self-publish, and been found wanting in the skills needed. After spending three days on Create Space, editing my 350 page manuscript, only to have it sent back to me as a "proof copy" and correcting such errors as "be" turned into "he" and vice-versa, not even to mention formatting issues.
Ever the over-achiever, I was convinced that I could do this. But, upon waking this morning, hands trembling once again while making coffee, I came to realize, "This stuff is killing me. Why not try to find a decent publisher who will take all, some, or one of my books?"My son confirmed my decision when he correctly stated, "Your time is non-productive doing this." And he's correct. Those three days could have been better spent on working on my sequel to my last novel. Maybe even finished the last few pages of my second draft. Instead, I wrestled with such issues as "formatting glitches" (theirs, not mine) and even doing yet another spell check.
No more. I'm contacting reputable publishers, even the "biggies" in New York. What can they say, other than "No?" I've been told that before; it's not a bullet through the heart.
I cannot continue abusing my lupus brain cells. I need to let go of my idea that I can run with the other kids, who are self- publishing.
Who have sailed through the process with never a problem. I thought I could do it, too, but reality has intruded. They don't have lupus and other chronic illnesses. And let's not forget the "brain fog" that creeps in on little cat's feet. (I think that phrase is from a poem, right? Just can't remember the name or the author. Typical of a lupie.)
I'm starting a new blog for writing, also. Look for "MyViewFrom Here" on blogger.com.This will be copied to that new blog, since it pertains to writing.
So I'm asking: Does anyone have a publisher they would recommend?
Since this latest "gift" of lupus thrives on stress, I have to make some decisions, here, about my writing career.
I have recently "fired" my publisher, Vanilla Heart Publishing, for breach of contract on many levels, along with 12 of my fellow authors in that publishing house. That's a stressor of major proportions, and not quite by coincidence, that's when my stress level increased to the point that I had to find out what was going on with my lupus. Heh. You might say I'm brain damaged, since the cause of these tremors is that nerves in my CNS are on overdrive; coming out of my overactive, stressed brain.
I have been trying to self-publish, and been found wanting in the skills needed. After spending three days on Create Space, editing my 350 page manuscript, only to have it sent back to me as a "proof copy" and correcting such errors as "be" turned into "he" and vice-versa, not even to mention formatting issues.
Ever the over-achiever, I was convinced that I could do this. But, upon waking this morning, hands trembling once again while making coffee, I came to realize, "This stuff is killing me. Why not try to find a decent publisher who will take all, some, or one of my books?"My son confirmed my decision when he correctly stated, "Your time is non-productive doing this." And he's correct. Those three days could have been better spent on working on my sequel to my last novel. Maybe even finished the last few pages of my second draft. Instead, I wrestled with such issues as "formatting glitches" (theirs, not mine) and even doing yet another spell check.
No more. I'm contacting reputable publishers, even the "biggies" in New York. What can they say, other than "No?" I've been told that before; it's not a bullet through the heart.
I cannot continue abusing my lupus brain cells. I need to let go of my idea that I can run with the other kids, who are self- publishing.
Who have sailed through the process with never a problem. I thought I could do it, too, but reality has intruded. They don't have lupus and other chronic illnesses. And let's not forget the "brain fog" that creeps in on little cat's feet. (I think that phrase is from a poem, right? Just can't remember the name or the author. Typical of a lupie.)
I'm starting a new blog for writing, also. Look for "MyViewFrom Here" on blogger.com.This will be copied to that new blog, since it pertains to writing.
So I'm asking: Does anyone have a publisher they would recommend?
Saturday, August 31, 2013
Another gift from Lupus....At least, I think it is.,,,,,,
In my most recent blog, I whined about having been very, very tired after going to a writers conference 50 miles from home and being too exhausted the next day to return for the rest of the conference. My fatigue and shaking continued, so I went to my Primary Care Physician and told her about it. She frowned, did some preliminary tests of my reflexes and then said she was sending me to a neurologist.
And so I went on the appointed day. He also listened to me about my experience with fatigue and shaking, and also performed some preliminary tests of my reflexes.
Then he leaned back and said, "I know what it is. I heard it."
Huh? I asked. "What do you mean?"
He said "Your voice is stressed. Has anybody remarked about it?"
No, I thought. Shrugged. Then he said, "You have a treatable condition that we have a medication for. You have benign essential tremors. That means it's not progressive, it's mostly hereditary and the medicine is an older one, very inexpensive, and it works."
He went on to explain that "older" people have it (sigh) and since I couldn't think of any family member who had this condition, probably mine is caused by -- get ready for this -- STRESS. (YA THINK?)
At this point I should say that I'm not "stressed" about anything in particular. I don't have anxiety, to my knowledge, unless you count the part of my life recently when I had to leave my publisher and take down all eight of my books from all the sales websites and start all over again as a self-publisher, having been assured by the 12 other authors who jumped ship with me and who are all incensed by her embezzlement of our rightfully earned royalties.
So back to the explanation of why I shake all the time, and am so fatigued.
Simple: Nerves in the part of the brain that control stress over-react, causing the trembling. He wrote me a prescription and told me to come back in two weeks.
The two weeks is fast approaching, and I'd like to report that I no longer shake nor have the fatigue. Heh. Just a little dinner out with two friends last night has laid me flat. Oh, sure, I'm not shaking too much, but the energy I needed to last through the day is gone.
He did say I might have to increase to two tablets per day, so maybe I'll have better luck with that increase.
He didn't say he thought lupus was the culprit, but I think it is just another component of what nasty things this condition can cause. There is such a thing as CNS lupus, and that, left to its own devices, can cause seizures and other CNS disorders. So I'm lucky, I suppose, that it's something relatively minor. I certainly don't want this to progress to seizure activity, like some persons with lupus have to live with and take stronger medications, if it is treatable in the first phase.
I was thinking I was doing pretty good for a "lupie" but this latest manifestation of "brain damage" (my words for it, not the doctor's) is another example of how things can pop up just when you think you've beaten SLE into submission. If it is related to lupus, I should say.
I think it is. My fatigue level is back at the first few years of my illness, when nobody had diagnosed me with anything more than rheumatoid arthritis. When I finally was diagnosed with SLE, I thought, "At last we know what we're dealing with and can treat it."
That's been 25 years ago. While I've had some serious issues, being hospitalized a couple of times, carried a cane, walked with a walker for a while, I had thought I was in the clear. What more could happen?
Not in the clear, more can happen. Deal with it as it comes. We learn.
And so I went on the appointed day. He also listened to me about my experience with fatigue and shaking, and also performed some preliminary tests of my reflexes.
Then he leaned back and said, "I know what it is. I heard it."
Huh? I asked. "What do you mean?"
He said "Your voice is stressed. Has anybody remarked about it?"
No, I thought. Shrugged. Then he said, "You have a treatable condition that we have a medication for. You have benign essential tremors. That means it's not progressive, it's mostly hereditary and the medicine is an older one, very inexpensive, and it works."
He went on to explain that "older" people have it (sigh) and since I couldn't think of any family member who had this condition, probably mine is caused by -- get ready for this -- STRESS. (YA THINK?)
At this point I should say that I'm not "stressed" about anything in particular. I don't have anxiety, to my knowledge, unless you count the part of my life recently when I had to leave my publisher and take down all eight of my books from all the sales websites and start all over again as a self-publisher, having been assured by the 12 other authors who jumped ship with me and who are all incensed by her embezzlement of our rightfully earned royalties.
So back to the explanation of why I shake all the time, and am so fatigued.
Simple: Nerves in the part of the brain that control stress over-react, causing the trembling. He wrote me a prescription and told me to come back in two weeks.
The two weeks is fast approaching, and I'd like to report that I no longer shake nor have the fatigue. Heh. Just a little dinner out with two friends last night has laid me flat. Oh, sure, I'm not shaking too much, but the energy I needed to last through the day is gone.
He did say I might have to increase to two tablets per day, so maybe I'll have better luck with that increase.
He didn't say he thought lupus was the culprit, but I think it is just another component of what nasty things this condition can cause. There is such a thing as CNS lupus, and that, left to its own devices, can cause seizures and other CNS disorders. So I'm lucky, I suppose, that it's something relatively minor. I certainly don't want this to progress to seizure activity, like some persons with lupus have to live with and take stronger medications, if it is treatable in the first phase.
I was thinking I was doing pretty good for a "lupie" but this latest manifestation of "brain damage" (my words for it, not the doctor's) is another example of how things can pop up just when you think you've beaten SLE into submission. If it is related to lupus, I should say.
I think it is. My fatigue level is back at the first few years of my illness, when nobody had diagnosed me with anything more than rheumatoid arthritis. When I finally was diagnosed with SLE, I thought, "At last we know what we're dealing with and can treat it."
That's been 25 years ago. While I've had some serious issues, being hospitalized a couple of times, carried a cane, walked with a walker for a while, I had thought I was in the clear. What more could happen?
Not in the clear, more can happen. Deal with it as it comes. We learn.
Monday, July 15, 2013
On planning and being foiled by lupus- --
Well, it's been a while since I've posted here. I've been unusually symptom free for quite a while, until Friday. And I'm ticked off about that. I've vowed not to complain in my blogs, and so far have succeeded, but this time, I need to vent. About this damned medical condition known as SLE - Lupus.
I've generally managed to toss off any symptoms showing me I'm in a flare, but let's face it...some flares are worse than others, and-- dare I say it-- I'm also 75 freakin' years old....been living with this wolf for 25 freakin' years, now, so you would think I should know what I can and what I can't do. Heh.
I missed out on a great writer's conference just down the road from me here in Fort Worth. It was in Denton TX, about 50 miles up I35, so I figured I could do that. I planned very carefully how to present my books for sale, what I would wear, and was looking forward to meeting other writers.
So I arrived about 3 PM on Friday where we were instructed to set up our book display, mix and mingle with other writers, and then have a nice buffet dinner. So far, so good.
I finished setting up my books, then went to the bar for a nice cool drink. Settled on the vending machine around the corner where I could purchase a bottled Margarita. Cool! So I nursed it for a couple of hours and visited with others. Standing at the bar area. I set my bottled Margarita on the bar -- or so I thought. It fell to the terrazzo floor, bouncing at least four times, causing everyone to glance my way. It didn't break. The bartender picked it up and trashed it, while my fellow writers broke out in applause. I gave a mock bow and said, "Thank you. Now, for my next trick...." and they all laughed and returned to their conversations, as did I.
But I worried a bit about losing my grip on the bottle, and I realized I had been shaking for about a week; nothing noticeable, unless you count my son wondering why I was shaking all the time...my hands particularly have been unable to keep a grasp on anything, and they shake when I try.
As I stood in the crowd, I thought maybe I should sit down, so the person I was talking with also went to a table and sat with me. It was difficult to converse, due to the 100 people confined in a small area, the television blaring a baseball game and some sort of music coming from another area. That's when I remembered that's why I don't like large parties, or gatherings of that nature. It's too hard to hear the person next to me, and they can't hear me, either, so I end up frustrated at even trying to talk and respond.
It was also tricky at the buffet line....Trying to balance a salad plate with one shaky hand and spoon the pasta onto another plate in another shaky hand is not fun. Then I came to the desserts.
A wonderful selection of cakes to choose from. I was wishing for a third hand as I attempted to scoop up a nice piece of carrot cake with creamy icing.
I was holding up the line trying to do this, but I finally succeeded in placing a nice slice of cake on yet another plate and balanced them all -- successfully, I might add-- to the table my newly acquired friend and I were sharing with a nice couple from NC.
All this time, I was becoming weaker and weaker, and it was very warm in the small space allotted to us. More attempts at conversation followed, but I'm afraid my end of it consisted of: "Sorry. What did you say?" And, with my new dentures in my mouth that still need one more adjustment, I realized I was pretty hard to understand, too. So right after dinner and the welcoming speech from the organizer, I whispered my "goodbyes" to the persons around me and slipped out the door.
The shaking was even worse by that time. I wondered if I could drive home. I succeeded in blocking the setting sun out of my eyes, and then the darkness descended. Everyone was trying to get in front of me, even though I was hitting the max. speed limit. Barriers on the road indicated a narrowing of one stretch of the interstate from three lanes to two, then two lanes to one. ARRGHH. I'm convinced all the other drivers are out to get me. Talk about Defensive Driving!
I arrived home somewhat later than I thought I would, and went straight to bed. The next morning, Saturday, I was supposed to leave my house no later than 8:00 AM. At 7:00, my son knocked on my door and asked why I wasn't up yet. I mumbled "I'm not going. I feel awful." And I turned over and went back to sleep. I napped throughout the day and then managed to meet two of my dearest friends for dinner we had planned for quite a while. No way was I going to miss that. So I went to meet them, ate a bit of veal Parmesan, and then went back home and crawled into bed.
Sunday morning, having texted the host of the conference on Saturday evening telling him I couldn't attend on Saturday, but would return on Sunday about noon to pick up my books, my son and I set out for the Hilton Garden Inn in Denton TX. (I felt too weak to drive and to pack up my books.)
I asked the host if I had sold any books and he said he didn't know, but would tell me when everything was over and accounted for. It sure didn't look like I had sold even one book. A big disappointment. Back home, I had a bit of lunch and returned to my bed.
Okay, it's now Monday afternoon and I'm feeling somewhat better.
So what did I learn?
First, a writer's conference is really not the optimum venue for selling one's books. A lot of folks looked at my selection, but I didn't seen anyone buying. (There were some girls there to accept payment) I did the same thing....I looked at what other writers were peddling, but I didn't buy anything, either. Lesson Number One.
Second, and this is the hardest lesson learned: I learned that a 75 year old woman with lupus cannot bear such stress and come out without some having some damage done to her poor body. I had some sense of "trembling" a couple of days before I set out, but my old friend Denial had ignored it. I'm okay. I'm not That Bad. I asked myself the same thing I have asked other Lupies: "How bad IS that bad?"
Today is Monday afternoon. I'm still shaking. My bed is beckoning me to climb in and nap a little. But first, I have to call my doctor's office and make an appointment to see what's going on. No doubt I will have to have some tests done; I'm wondering if it's something neurological. Then again, I'm wondering if a healthy woman my age would suffer the same symptoms?
At any rate, I'll now have to evaluate each "excursion" according to my present state -- I had already started out with one strike against me -- that of shaking -- and the possible consequences that would bring. I told myself that just talking to other writers wouldn't be stressful, but I didn't factor in the driving mileage, the noise level, and the stress of trying to make conversation in a crowded environment.
My friends, God bless them, told me they couldn't have done that without some damage to their own aging bodies.
Sometimes it's life. Sometimes it's lupus.
I have to adjust to both. Dammit.
I've generally managed to toss off any symptoms showing me I'm in a flare, but let's face it...some flares are worse than others, and-- dare I say it-- I'm also 75 freakin' years old....been living with this wolf for 25 freakin' years, now, so you would think I should know what I can and what I can't do. Heh.
I missed out on a great writer's conference just down the road from me here in Fort Worth. It was in Denton TX, about 50 miles up I35, so I figured I could do that. I planned very carefully how to present my books for sale, what I would wear, and was looking forward to meeting other writers.
So I arrived about 3 PM on Friday where we were instructed to set up our book display, mix and mingle with other writers, and then have a nice buffet dinner. So far, so good.
I finished setting up my books, then went to the bar for a nice cool drink. Settled on the vending machine around the corner where I could purchase a bottled Margarita. Cool! So I nursed it for a couple of hours and visited with others. Standing at the bar area. I set my bottled Margarita on the bar -- or so I thought. It fell to the terrazzo floor, bouncing at least four times, causing everyone to glance my way. It didn't break. The bartender picked it up and trashed it, while my fellow writers broke out in applause. I gave a mock bow and said, "Thank you. Now, for my next trick...." and they all laughed and returned to their conversations, as did I.
But I worried a bit about losing my grip on the bottle, and I realized I had been shaking for about a week; nothing noticeable, unless you count my son wondering why I was shaking all the time...my hands particularly have been unable to keep a grasp on anything, and they shake when I try.
As I stood in the crowd, I thought maybe I should sit down, so the person I was talking with also went to a table and sat with me. It was difficult to converse, due to the 100 people confined in a small area, the television blaring a baseball game and some sort of music coming from another area. That's when I remembered that's why I don't like large parties, or gatherings of that nature. It's too hard to hear the person next to me, and they can't hear me, either, so I end up frustrated at even trying to talk and respond.
It was also tricky at the buffet line....Trying to balance a salad plate with one shaky hand and spoon the pasta onto another plate in another shaky hand is not fun. Then I came to the desserts.
A wonderful selection of cakes to choose from. I was wishing for a third hand as I attempted to scoop up a nice piece of carrot cake with creamy icing.
I was holding up the line trying to do this, but I finally succeeded in placing a nice slice of cake on yet another plate and balanced them all -- successfully, I might add-- to the table my newly acquired friend and I were sharing with a nice couple from NC.
All this time, I was becoming weaker and weaker, and it was very warm in the small space allotted to us. More attempts at conversation followed, but I'm afraid my end of it consisted of: "Sorry. What did you say?" And, with my new dentures in my mouth that still need one more adjustment, I realized I was pretty hard to understand, too. So right after dinner and the welcoming speech from the organizer, I whispered my "goodbyes" to the persons around me and slipped out the door.
The shaking was even worse by that time. I wondered if I could drive home. I succeeded in blocking the setting sun out of my eyes, and then the darkness descended. Everyone was trying to get in front of me, even though I was hitting the max. speed limit. Barriers on the road indicated a narrowing of one stretch of the interstate from three lanes to two, then two lanes to one. ARRGHH. I'm convinced all the other drivers are out to get me. Talk about Defensive Driving!
I arrived home somewhat later than I thought I would, and went straight to bed. The next morning, Saturday, I was supposed to leave my house no later than 8:00 AM. At 7:00, my son knocked on my door and asked why I wasn't up yet. I mumbled "I'm not going. I feel awful." And I turned over and went back to sleep. I napped throughout the day and then managed to meet two of my dearest friends for dinner we had planned for quite a while. No way was I going to miss that. So I went to meet them, ate a bit of veal Parmesan, and then went back home and crawled into bed.
Sunday morning, having texted the host of the conference on Saturday evening telling him I couldn't attend on Saturday, but would return on Sunday about noon to pick up my books, my son and I set out for the Hilton Garden Inn in Denton TX. (I felt too weak to drive and to pack up my books.)
I asked the host if I had sold any books and he said he didn't know, but would tell me when everything was over and accounted for. It sure didn't look like I had sold even one book. A big disappointment. Back home, I had a bit of lunch and returned to my bed.
Okay, it's now Monday afternoon and I'm feeling somewhat better.
So what did I learn?
First, a writer's conference is really not the optimum venue for selling one's books. A lot of folks looked at my selection, but I didn't seen anyone buying. (There were some girls there to accept payment) I did the same thing....I looked at what other writers were peddling, but I didn't buy anything, either. Lesson Number One.
Second, and this is the hardest lesson learned: I learned that a 75 year old woman with lupus cannot bear such stress and come out without some having some damage done to her poor body. I had some sense of "trembling" a couple of days before I set out, but my old friend Denial had ignored it. I'm okay. I'm not That Bad. I asked myself the same thing I have asked other Lupies: "How bad IS that bad?"
Today is Monday afternoon. I'm still shaking. My bed is beckoning me to climb in and nap a little. But first, I have to call my doctor's office and make an appointment to see what's going on. No doubt I will have to have some tests done; I'm wondering if it's something neurological. Then again, I'm wondering if a healthy woman my age would suffer the same symptoms?
At any rate, I'll now have to evaluate each "excursion" according to my present state -- I had already started out with one strike against me -- that of shaking -- and the possible consequences that would bring. I told myself that just talking to other writers wouldn't be stressful, but I didn't factor in the driving mileage, the noise level, and the stress of trying to make conversation in a crowded environment.
My friends, God bless them, told me they couldn't have done that without some damage to their own aging bodies.
Sometimes it's life. Sometimes it's lupus.
I have to adjust to both. Dammit.
Thursday, May 23, 2013
A Request from Outside the Lupus Community
This post will be a bit different from my usual messages about SLE or Lupus. Someone has requested my help in spreading the word about mesothelioma, cancer.
I expect we all know someone who suffers from cancer; my younger daughter was stricken with breast cancer about 3 years ago and opted for a double mastectomy. The treatment for cancer is barbaric, IMO. As are many treatments for lupus.
So in the interest of fair sharing, I'm posting the appeal here:
I expect we all know someone who suffers from cancer; my younger daughter was stricken with breast cancer about 3 years ago and opted for a double mastectomy. The treatment for cancer is barbaric, IMO. As are many treatments for lupus.
So in the interest of fair sharing, I'm posting the appeal here:
Hello Marylin,
My name is Susan Vento. My husband Bruce was a
member of the US
House of Representatives—until October 10th, 2000, when
everything changed.
Bruce died of pleural mesothelioma—a rare disease caused by
asbestos exposure
that kills 90-95% of those who have it. Not many people know
about this
terrible disease, which lead me to reach out to you; I noticed
that you have an
influential blog full of great information. Since we both have
been affected by
cancer in some capacity, I am hoping you will help me spread
awareness about
asbestos cancers and help to protect the rights of those who
have been affected
by mesothelioma and other cancers.
I am spokesperson for a great online resource
called the Cancer
Victims’ Rights Campaign (cancervictimsrights.org)
that fights to
protect cancer victims and their families. I wrote a blog piece
(http://cancervictimsrights.org/my-story-opposition-to-the-fact-act-susan-vento/) and
would
love if you could read it, share it and incorporate your
thoughts. Your
support, and the support of your online community, can make the
difference to
ensure justice for all cancer victims and their loved ones.
Thank you in advance for joining me in my fight
to educate
people about such a deadly disease. Individuals and
families affected by
cancer already have enough on their plate-please, sign &
share the petition
to protect victims’ rights. Together we can make a huge impact!
Best,
Susan
-- Susan Vento Activist Asbestos Cancer Victims' Rights Campaign http://cancervictimsrights.org/
Thursday, April 25, 2013
Lupus presents a surprise
My PCP was doing my yearly checkup when she paused and said, "You have a lump in your breast." She turned to enter that information into my chart.
My heart skipped a beat. WHAT? A lump in my breast?
She said it was here...and she led my hand to the spot and sure enough, there was a rock-hard ball of something in my left breast.
"It's probably nothing, but you need to go have it checked out."
So she made the appointment to have an aspiration done at the Breast Center in the hospital downtown.
I tried not to fret, but I was understandably worried. The appointment was in a couple of days, and I tried not to think that was because my case was "urgent"....which was probably not true, at all.
I liked my doctor, a woman, and she explained everything
before we proceeded. I got to watch the monitor as she did it. Like the time I had arthroscopic knee surgery, I watched on the monitor, and since I told them that I was in Risk Management at this very hospital, they proceeded very carefully, explaining things as they went along. I even corrected the tech who was putting the mercurochrome (?) on my leg and said, "it's your left knee, right?" And I said, "It's my left knee, CORRECT."
First thing she said was that she thought it
looked like it was a fluid-filled cyst, and when she inserted the needle and
began pulling it out, I could see the fluid being drawn out and the little pin
hole closing up. TA DAH! All done.
Or so we thought.
"Well, we have some blood in the syringe,
and some debris, so I'll have to send it off to pathology."
Okay, no TA DAH. I thought. First, I asked,
"Why is there blood in there?" We don't know yet.
Second, "What is debris?" Well, it's
non-specific junk the body produces, like when you leave a glass of water out
on the table for a day or so, it collects minute particles from
nowhere....that's what debris is.
"So what happens now? Will it come
back?"
There's a 50-50 chance of it coming back,
sometimes in a day or two, next month or next year or never. We'll just have to
wait and see.
"Well, I'm not willing to do this again
and again. Can we have a lumpectomy?"
There's no lump right now. You'll have to talk
to Dr. So and So....
So, I'll hear either by Friday or Monday --
seems that a blood workup takes longer than a core biopsy for some reason. And
when they call me, they will tell me what comes next, according to the results.
I can tell you one thing: I know where
my insurance money is going. The Center for Breast Care (I think
that's the full name) is located in the new building attached to the Downtown hospital. (Names are being withheld) It is some kind of swanky spa atmosphere.
Marble topped tables with huge vases of
artificial floral designs in them, lots of tapestry straight-back chairs,
oriental rugs on wood floors, classical music on the overhead intercom.
When I got called to the back of the Inner Sanctum,
I was given a "cape" (not one of those tacky hospital gowns, but a
purple cape with velcro, so I felt like The Caped
Avenger or something) and escorted to the dressing rooms area.
Again,
all carpeted, marble topped table in the center of the room, with tastefully
arranged dressing rooms at the sides, with a key to lock your valuables inside
and wear the key on your wrist via a cord. Then you wait again in another area
and somebody comes with more paperwork, more explanations of what will follow,
and then you are called into the treatment room.
After I was all through, I went back to the
dressing room, relinquished my Caped Avenger outfit, resumed my ordinary
disguise, paid my copay and left. The bill was well over $1,000, which I hope
to hell Medicare pays in full.
I'm a little sore, but they told me I would
be, and it's not all the time. Just occasionally I know I've had some work done
there.
Not to worry. The tests came back negative.
Marilyn 1, Lupus 0.
Thursday, April 11, 2013
I've been AWOL
I've been fairly lax in posting here on my Lady with Lupus blog. Mainly because, thank God, Lupus has not bitten me lately...(Knock on wood) and I've been busy doing things I can't do when I'm in the midst of a flare. You all know about that, don't you?
Sjogren's Syndrome kicked me in the butt last November. My teeth suffered so badly from the dry mouth SJ produces that I had to make a decision: Either keep letting my teeth fall out or get dentures.
Dentures are expensive. However, my health care is expensive, too, since I realized my teeth were sending poisons into my already burdened body and making my overall health suffer.
I went for an evaluation to a place a friend had recommended. They explained everything in detail, how this is a process and not an event, and --ahem-- the total cost, to be paid up front.
My dear daughter in CA agreed to pay for it, bless her heart. So, we began the process.
The initial pulling, grinding and sewing took a couple of hours. I was of course, given numbing shots, you know the kind, where your face and lips swell up to the size of a football and when you drink water, it dribbles out of one of your mouths. Plural. I was told "there will be blood" and they weren't kidding. I coped with that during my waking hours, but when I was asleep, I colored my pillowcases red.
Took the stitches out a few days later; they were already coming out, anyway. The dentist said he had never seen anybody heal as rapidly as I have. Huh. And I have lupus and diabetes. How can that be? But it is true; he's amazed. Of course, I wanted my dentures yesterday, not now. But the assistant placed about a Cadillac-sized dentures in my mouth with instructions to learn how to take them out and re-insert them. I had no problem with taking them out. I couldn't eat or talk with the darned things.
But, ever mindful this is a process, not an event, I plodded along. We passed the six month mark Tuesday, with me becoming quite proficient in insertion and removal of my new pearly-whites. I experimented with different brands of denture adhesive, but none of them kept the bottom plate from sliding around.
What to do? Heh. Well, we had talked about implants....they could insert posts into the gum line and kind of "hook" the lower plate on the post.
Tuesday was the day. The day the dentist planted two metal posts to have the bone grow around and make stable. Then, in six months, we can put the posts on for the denture to fit into.
Today is Thursday. I look like I've been in a bar fight, with bruises around my mouth and chin. I feel like I've been in a bar fight, too, since the pain killer prescribed for me right after the surgery, proved to be one that I have adverse reactions to. I began shaking all over. It wouldn't stop. My muscles twitched and jumped and I found it hard to walk. Son had to help me into the bathroom. Into the kitchen, where I insisted I could make my own soup. I tried to sleep, but didn't get a wink of sleep all night. But I made up for it on Wednesday, taking one nap after another.
Today, I'm finally not shaking. Being a diabetic, ever mindful of how my body reacts to low sugar levels, it was hard for me to determine whether or not I was having a blood sugar dive in the middle of the night. I had to get up, shaking as I was, and take my glucose reading.
Ha. Not low blood sugar; it's still the blankety-blank pain killers. I went back to bed. So yesterday was a blur. I must say, too, that my brain was in a fog. Similar to one of those Lupie fogs we all get from time to time. I was under stress; my body had been assaulted; and I shouldn't even try to make sense to anybody, when I couldn't even form a complete thought.
So today, so far, is going better.
I have to admit, though, I'm getting tired of all this dental stuff. I want my dentures to fit YESTERDAY. And without denture adhesive, which leaves a tacky residue in my mouth and I have to get rid of by drinking warm liquids.
I go back on next Thursday to have the stitches taken out. Looking at my former experience with taking sutures out, there won't be a whole lot of "taking out," since they had fallen out, anyway, or at least part of them were gone. I hope this takes the same path.
Okay, in six months, I go back to have this process finished: they will put the metal posts inside the pocket they've already made, and then my lower plate will be stabilized.
Six months! I will have to cope with this for another six months. And the dentist warned me about using too much dental adhesive, but how else can I keep the lower denture from moving? Heh. Bring on the Poli-grip. Industrial Sized.
Well, they told me at the beginning this was going to be a Process, not an Event. Don't you just hate it when somebody tells you something like that, and they're right?
Six more months.
Sigh. I just hope this doesn't bring on a big ol' flare.
PS: I also blog at another site, mostly on writing issues, but I invite you to put it on your list to check out, because every once in a while I also whine on that blog...but not as much as here.
It's authormarilyncmorris.wordpress.com
Sjogren's Syndrome kicked me in the butt last November. My teeth suffered so badly from the dry mouth SJ produces that I had to make a decision: Either keep letting my teeth fall out or get dentures.
Dentures are expensive. However, my health care is expensive, too, since I realized my teeth were sending poisons into my already burdened body and making my overall health suffer.
I went for an evaluation to a place a friend had recommended. They explained everything in detail, how this is a process and not an event, and --ahem-- the total cost, to be paid up front.
My dear daughter in CA agreed to pay for it, bless her heart. So, we began the process.
The initial pulling, grinding and sewing took a couple of hours. I was of course, given numbing shots, you know the kind, where your face and lips swell up to the size of a football and when you drink water, it dribbles out of one of your mouths. Plural. I was told "there will be blood" and they weren't kidding. I coped with that during my waking hours, but when I was asleep, I colored my pillowcases red.
Took the stitches out a few days later; they were already coming out, anyway. The dentist said he had never seen anybody heal as rapidly as I have. Huh. And I have lupus and diabetes. How can that be? But it is true; he's amazed. Of course, I wanted my dentures yesterday, not now. But the assistant placed about a Cadillac-sized dentures in my mouth with instructions to learn how to take them out and re-insert them. I had no problem with taking them out. I couldn't eat or talk with the darned things.
But, ever mindful this is a process, not an event, I plodded along. We passed the six month mark Tuesday, with me becoming quite proficient in insertion and removal of my new pearly-whites. I experimented with different brands of denture adhesive, but none of them kept the bottom plate from sliding around.
What to do? Heh. Well, we had talked about implants....they could insert posts into the gum line and kind of "hook" the lower plate on the post.
Tuesday was the day. The day the dentist planted two metal posts to have the bone grow around and make stable. Then, in six months, we can put the posts on for the denture to fit into.
Today is Thursday. I look like I've been in a bar fight, with bruises around my mouth and chin. I feel like I've been in a bar fight, too, since the pain killer prescribed for me right after the surgery, proved to be one that I have adverse reactions to. I began shaking all over. It wouldn't stop. My muscles twitched and jumped and I found it hard to walk. Son had to help me into the bathroom. Into the kitchen, where I insisted I could make my own soup. I tried to sleep, but didn't get a wink of sleep all night. But I made up for it on Wednesday, taking one nap after another.
Today, I'm finally not shaking. Being a diabetic, ever mindful of how my body reacts to low sugar levels, it was hard for me to determine whether or not I was having a blood sugar dive in the middle of the night. I had to get up, shaking as I was, and take my glucose reading.
Ha. Not low blood sugar; it's still the blankety-blank pain killers. I went back to bed. So yesterday was a blur. I must say, too, that my brain was in a fog. Similar to one of those Lupie fogs we all get from time to time. I was under stress; my body had been assaulted; and I shouldn't even try to make sense to anybody, when I couldn't even form a complete thought.
So today, so far, is going better.
I have to admit, though, I'm getting tired of all this dental stuff. I want my dentures to fit YESTERDAY. And without denture adhesive, which leaves a tacky residue in my mouth and I have to get rid of by drinking warm liquids.
I go back on next Thursday to have the stitches taken out. Looking at my former experience with taking sutures out, there won't be a whole lot of "taking out," since they had fallen out, anyway, or at least part of them were gone. I hope this takes the same path.
Okay, in six months, I go back to have this process finished: they will put the metal posts inside the pocket they've already made, and then my lower plate will be stabilized.
Six months! I will have to cope with this for another six months. And the dentist warned me about using too much dental adhesive, but how else can I keep the lower denture from moving? Heh. Bring on the Poli-grip. Industrial Sized.
Well, they told me at the beginning this was going to be a Process, not an Event. Don't you just hate it when somebody tells you something like that, and they're right?
Six more months.
Sigh. I just hope this doesn't bring on a big ol' flare.
PS: I also blog at another site, mostly on writing issues, but I invite you to put it on your list to check out, because every once in a while I also whine on that blog...but not as much as here.
It's authormarilyncmorris.wordpress.com
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