It's the crazy season already. You know, the Christmas season rushing towards us like a steam engine gone amok, and we have to respond: either jump aboard or get run over.
This season will be a true test of how well my remission from lupus really is. I'm not only anticipating Christmas, with its attendant cleaning frenzy, shopping, and decorating, but I've also been very busy putting my books back on the Internet, under Create Space and Amazon. It's a steep learning curve for this old lady, but I'm getting there. Four up, four to go.
I thought my "benign essential tremors" were gone, but I find myself shaking a bit before I go to bed. Maybe it's the lapse in time from when my daytime dose of Primadone wears off and the nighttime dose hasn't become effective.
At least, that's my opinion. Until I'm proven otherwise, I will plod along, doing what I can, with lupus flares far from my mind. Another thing, I am not in dire straits like so many Lupies I know and love, or even my friends who don't have lupus, but are beset by chronic conditions that threaten to take them down.
All things considered, I think I can do this silly season without too much harm to my tired old body.
If not, well, too bad. I'll do as much as I can, and forget about it. Each year, I decorate the house less. Each year, the tree doesn't get trimmed with ALL the ornaments I've accumulated through the years. Each year, I let my family members pitch in and help after the Christmas dinner is consumed. I haven't quite reached the stage of "screw it, we'll have paper plates and cups."
But it's getting close.
Saturday, November 9, 2013
Saturday, October 12, 2013
About the Benign Essential Tremors....
Shhh. Don't say it too loud, but I think my "benign essential tremors" are not present any more!
Why do I think that? Well, for one thing, the neurologist said he thinks the Primidone is working, and second, I just don't feel the tremors any more.
I went yesterday to a Senior Citizen's Craft Fair yesterday with a friend. This event is huge, and I mean, huge. It fills the Exhibits Hall of Will Rogers Coliseum in Fort Worth, with tables and tables of hand-made crafts.
My "craft" was 25 copies of Sabbath's Gift, Sabbath's House and Forces of Nature, all published by moi, and discounted to $8.00. I wandered by the table and took a quick look at the stack and it seemed a bit smaller....maybe sold 3-4 books. Yesterday was the 2nd day of the Fair, and today will be the last. Rumor has it that Thursday afternoon is the busiest. It was fairly busy yesterday, as far as I could see. The check-out lines were long, even though they had about 8 lines for quick check-out.
Anyway, after walking all over the place, albeit slowly (I had to put on the brakes at the jewelry counters) and conversing with my friend, who had brought her three-pronged cane that has a small seat attached, if needed, but neither of us took advantage of it.
So when we left, I with just the purchase of banana bread, and she with a Christmas wreath and a couple of little girls dresses, and walked back to the car, I was feeling fairly tired, but noticed I wasn't shaking at all.
Compared to a month ago, this little trek would have done me in. If I had gone, that is. I had become almost a recluse, not leaving the house for days, because everything exhausted me.
Now, look at me! No shaking. No feeling of utter fatigue.
Let's hope this will not be just a fluke, and the next time I go somewhere, I won't return exhausted.
Why do I think that? Well, for one thing, the neurologist said he thinks the Primidone is working, and second, I just don't feel the tremors any more.
I went yesterday to a Senior Citizen's Craft Fair yesterday with a friend. This event is huge, and I mean, huge. It fills the Exhibits Hall of Will Rogers Coliseum in Fort Worth, with tables and tables of hand-made crafts.
My "craft" was 25 copies of Sabbath's Gift, Sabbath's House and Forces of Nature, all published by moi, and discounted to $8.00. I wandered by the table and took a quick look at the stack and it seemed a bit smaller....maybe sold 3-4 books. Yesterday was the 2nd day of the Fair, and today will be the last. Rumor has it that Thursday afternoon is the busiest. It was fairly busy yesterday, as far as I could see. The check-out lines were long, even though they had about 8 lines for quick check-out.
Anyway, after walking all over the place, albeit slowly (I had to put on the brakes at the jewelry counters) and conversing with my friend, who had brought her three-pronged cane that has a small seat attached, if needed, but neither of us took advantage of it.
So when we left, I with just the purchase of banana bread, and she with a Christmas wreath and a couple of little girls dresses, and walked back to the car, I was feeling fairly tired, but noticed I wasn't shaking at all.
Compared to a month ago, this little trek would have done me in. If I had gone, that is. I had become almost a recluse, not leaving the house for days, because everything exhausted me.
Now, look at me! No shaking. No feeling of utter fatigue.
Let's hope this will not be just a fluke, and the next time I go somewhere, I won't return exhausted.
Wednesday, October 2, 2013
My Neurologist's Appointment
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.
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, 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.
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