If I have to go to a neurologist, I'm glad he's the one. Young guy (at my age, all doctors are young) very observant.
We reviewed how I was doing after increasing the Primidone to 50 mg. in the morning and one at night. Gave me a new prescription for that. He had me do the usual exercises and said I was "rock solid" for standing still and holding my arms out while my eyes were closed. Then he had me walk across the room; I had told him I was having issues with balance. He observed me and said, "You're walking with some hesitation; your left leg seems a bit slower than the right." I told him that's what I felt when I got up from my chair to do something, and my left leg insisted on leading me the wrong way, if it doesn't absolutely give way and tries to make me fall. Of course, I couldn't duplicate that in the doctor's office.
So all in all, he thinks the meds are working, and we're keeping it that way until January, when I have my next appt.
I'm still wondering if this is a part of lupus acting up, or if it's something else apart from the lupus. It really doesn't matter, i suppose, as long as I'm being treated for these benign essential tremors.
I have an appt. with my rheumatologist next week. I've done the lab tests, so he'll be able to see if I'm in a flare or not.
It's always something.
Wednesday, October 2, 2013
Wednesday, September 18, 2013
Passing this along.....
I'm always happy to pass along any notices about special events observing lupus:
Patients Inspire Doctors, Enable Medical Advances at Hospital for Special Surgery
“Honoring Lupus Heroes” event will recognize patients’ remarkable contributions to lupus research and care on September 24
New York, Sept. 18, 2013— As part of Hospital for Special Surgery’s 150th
anniversary celebration, the Division of Rheumatology will honor the
thousands of lupus patients who have inspired each member of the
healthcare team. “Honoring Lupus Heroes,” will celebrate patients’
wisdom, generosity and invaluable contributions to lupus research and
care on Tuesday, September 24, from 5 PM to 7:30 PM.
The event will take place in the Richard L. Menschel Education Center
on the second floor of the hospital’s main building in New York City .
“Our
patients are the unsung heroes who have helped transform lupus care,”
said Dr. Jane E. Salmon, Director of the Lupus and Antiphospholipid
Syndrome Center of Excellence at Hospital for Special Surgery (HSS).
“They donate blood and tissue samples for research, take investigational
drugs in clinical trials, provide personal insights to improve how we
care for them and for others. They are philanthropic and volunteer as
peer counselors. They sacrifice time, energy, personal resources and
their own privacy to advance science and clinical care.”
An
auto-immune disease that can affect the joints, skin, kidneys, heart
and other organs, lupus affects 600,000 people in the United States .
HSS is internationally known for research into the disease and treats
one of the world’s largest populations of lupus patients.
“When
I started out as a physician many years ago, the average survival rate
was around three years. Today it is rare to lose a patient to lupus,”
said HSS rheumatologist Dr. Michael Lockshin. “Advances in lupus
treatment have transformed it from a fatal disease to a chronic illness,
enabling many people to lead normal lives. ‘Honoring Lupus Heroes’ will
help us acknowledge the many patients who have helped HSS lead the way
in gaining a better understanding of this disease.”
One
such patient is Rachel Grodzinsky, one of the first people to
participate in a study at Special Surgery challenging the widely-held
belief that women who had lupus should not become pregnant.
“I
felt somewhat honored to be a part of it. I felt it was really
important,” she recalls. “Pregnancy was something I had been struggling
with for a few years before I actually got into the study. It felt very
dear to me because it was something that I felt would help people after
me.” Grodzinsky later became the proud mother of two sons.
At
the event, Dr. Lockshin will present an historical timeline of lupus
and HSS, including important milestones representing significant
breakthroughs in research and treatment. Several lupus patients and
their family members will reflect on their experiences at Hospital for
Special Surgery and how they were inspired to make a difference in the
lives of other patients. In addition, HSS team members - including
physicians, nurses, social workers and others - will pay tribute to
specific “Lupus Heroes.”
At
the conclusion of the event, HSS physician-in-chief Dr. Peggy Crow will
unveil a plaque honoring these heroic pioneers and all of the HSS
patients who continue to help advance the field.
“Our
‘Lupus Heroes’ are extraordinary people whose contributions have helped
improve the lives of thousands of individuals with the disease,” said
Dr. Crow. “They have taught us poignant lessons about compassion,
service and excellence in care. We are deeply grateful that they have
allowed us to learn from their journey and grow as caregivers, and we’re
thrilled to have this opportunity to honor them.”
About Hospital for Special Surgery
Founded
in 1863, Hospital for Special Surgery (HSS) is a world leader in
orthopedics, rheumatology and rehabilitation. HSS is nationally ranked
No. 1 in orthopedics, No. 4 in rheumatology and No. 5 in geriatrics by
U.S. News & World Report (2013-14), and is the first hospital in New
York State to receive Magnet Recognition for Excellence in Nursing
Service from the American Nurses Credentialing Center three consecutive
times. HSS has one of the lowest infection rates in the country. From
2007 to 2012, HSS has been a recipient of the HealthGrades Joint
Replacement Excellence Award. HSS is a member of the New
York-Presbyterian Healthcare System and an affiliate of Weill Cornell
Medical College and as such all Hospital for Special Surgery medical
staff are faculty of Weill Cornell. The hospital's research division is
internationally recognized as a leader in the investigation of
musculoskeletal and autoimmune diseases. Hospital for Special Surgery is
located in New York City and online at www.hss.edu.
For more information contact:
Tracy Hickenbottom
212-606-1197
Robin Frank
(646) 797-8454
Martin Blair
212-576-2700
Sunday, September 15, 2013
Is it Life or is it Lupus?
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.
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 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/
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