Remember: You have Lupus!

I have had a congestion of the head and chest for the last two weeks. I took Mucinex DM and aspirin, thinking I would get better. After all, I HAD to be better for the family to be here on Christmas Eve, and my daughter had come home from CA and we were very busy with her, too.
I kept spiking a fever. I took more aspirin. I kept feeling congested. I took more Mucinex DM. Yet, this congestion never went away.
Finally, with Christmas Eve over, I woke on Christmas morning with a funny feeling.....Reality. The congestion was getting worse, not better. And my fever had shot up.
I told my son he had to take me to the ER. I needed some "big guns" to kick this stuff.
Off we went, and I was seen right away. Chest x-ray and blood samples taken; I couldn't give a urine sample and realized I hadn't urinated after the night before. Told them. They hung a bag of saline solution and soon they were back with the results of my x-ray and blood work.
I was very dehydrated. Very. Even though I drank water like a fish; the meds I was using had dried up everything, but not gotten rid of the mucus.
Diagnosis was bronchitis. My old friend had reared its ugly head. As a child, I spent every winter with a vaporizer under my tented sheets, and missed winter break; got well just in time to go back to school.
I should have recognized the symptoms.
I should have gotten help sooner.
 I should have known better. 
But Wonder Woman prevailed throughout the holiday season; the planning, the cooking, the decorating, all accompanied by labored breathing and the promise to myself that "I will be better tomorrow."
The eternal optimist.  By the time I got to the ER, I was mentally kicking myself, and I more or less told the doctor, "For two weeks, I kept thinking I was going to get better."
He looked at me kind of thunderstruck. This woman had toughed it out too long before getting help. I shrugged. That's the way I am.
Well, not any more.
From now on, I'll kick that optimism to the curb, and deal with reality. The reality is, I have lupus.
The reality is, I have diabetes. My blood glucose had shot up to unbelievable levels, and then tanked in the middle of the night. That should have been a clue.
My reality is, my joints hurt. I also have RA, and most of the time, it's not too much of a pain, but my hands were swollen and hurting; could be a lupus flare, too.
So, this is my promise, in public: I will no longer be delusional in the thinking that "I will be better tomorrow." I will contact my primary care physician earlier than two weeks of symptoms, when her office was closed, of course, for the holidays.
Now, I feel really stupid that I waited so long before getting "big guns."

I should have recognized the symptoms.
I should have gotten help sooner.
I should have known better. 
So, this is my pledge to all the lupies who read this:
I will recognize when I'm keeping the symptoms more than a couple of days. 
I will get help a lot sooner.
I will look back on this experience and realize I should have known better.
Lupus just ain't any old condition. It disguises itself in so many ways, I don't recognize it when it appears. I'm not Wonder Woman.
And if you ever read on this blog that I have slipped back into my old habits of denial and optimism, please send me a pithy comment or two.
I need it.

Pushing my Luck?

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.

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.

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.

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 150^th 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.”

 

A Lupus Chat will take place on the HSS Facebook page on November 6 from 5:30 to 6:30 p.m. EDT.

 

 

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

HickenbottomT@hss.edu

 

Robin Frank

(646) 797-8454

FrankR@hss.edu

 

Martin Blair     

212-576-2700

Mblair@goodmanmedia.com

 

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. 

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?