Monday, March 17, 2014

Physical therapy

first, I want to apologize for my computer not allowing me to make capital letters. Especially capital letters at the beginning of a sentence, like "first".....although it did capitalize "Especially." go figure.
anyway, my ever so astute neurologist suggested I solve my balance problems by having physical therapy. I took a dim view of that for a bit, but then agreed, since they will come to my house, and my insurance will pay for it. Otherwise, no way.
I actually had two (2) physical therapists: Ann came on Mon and wed. for my upper body strengthening, and Joni came on Tues and Thurs for my lower body strengthening. both just about killed me at first.
with Ann, I used dumbbells, borrowed from a neighbor. two and a half- pounds. Up and down, over and across, meet in the middle....all fairly simple, but I sure felt muscles I didn't know I had.
She also advised me to take one of the molded plastic lawn chairs and put it in the shower. I had really begged for some kind of grab bar on the tub so I could take a warm tub bubble bath, but she said NO. she had too many clients who got in the tub and couldn't get out for days. and that was only because someone happened to come over to check on them.
So lawn chair is in the shower. It works just fine. I had put a stool in the shower stall, but she said the lawn chair would be better, because it had a back where I could rest by back on it. cool. I have the kind of shower head that is on a long cord, for lack of a better word, so I can aim the shower head where I want it. shampoo, body wash, rinse and I'm through. Use the arms on the lawn chair to boost myself up, if necessary.
Lower body exercises are more intense, later in the therapy sessions, we added leg weights. borrowed from my younger daughter, who has had nearly every bone in her body broken (through horseback riding accidents, roller skating, and just plain being unlucky) so she has all the equipment I needed. Velcro is a wonderful thing, as I was able to put the weights on my ankles and then do the myriad exercises.
My favorite exercise is stretching in the morning. I watched my daughter do her stretches in the morning while she was here at Christmas time. Now I feel like I'm doing my stretches with her.
the last exercise was just walking down the sidewalk. I went only three houses the first day, with my torturer-- er, I mean, my therapist. the next day, I added another house, to make four. Up and back.
today, I'm up to seven houses. that's almost a half a block. I'm getting stronger; look out, world.
Now, if I can only get my computer to cooperate....I'm strong enough now to whack it until it submits.
but I don't think that would be a good thing.

Wednesday, January 15, 2014

Not a great evening

I met some friends for dinner one night last week. One of the women was visiting from out of town, and her hostess asked her where she would like to go eat.
Well, the choice she made was not one of my all-time favorites. Let's just say, it's over-priced, crowded and noisy, too.
But away we went.
I arrived a bit early, so I went inside and put our names on the list and was handed one of those little discs that lights up when your table is ready. I was also told it would be 30-35 minutes.
Since the night was delightful for a January in Fort Worth TX, I had no problem waiting outside on their patio.
Soon my friends arrived, after having a heck of a time finding a parking space.
Sure enough, our table was ready. The noise engulfed me. Tile floors, stucco roof, no curtains on the windows, nothing absorbed the din of pre-dinner drinkers at the bar, and other patrons eating their dinners, talking above the din.
I started getting a headache even before we ordered our overpriced meals. I ordered a somewhat moderate dinner, knowing full well I wouldn't eat all of it. The portions were huge.
And our dinners arrived. We were seated at a circular table, and the only person I could hear was seated next to me. Forget talking across the table to other people.
So my diner to the left of me led the conversation and I replied as best I could to what I thought she had said. I have a friend who says when she can't hear anybody in a din like that, she just makes up what she thought she heard. I think that's what I did. Making sense of something was futile. I think I answered and followed her conversation, but probably not.
Finally, we were all paid up, doggie bags ordered for one thrifty diner, and we proceeded out of the restaurant.
By that time, I was completely disoriented. I asked the woman in the lead, "Why are we going out this way?"
She said, "Because this is the way we came in."
Ah, now I could see the hostess table with the twinkly little discs, and harried looks on their young faces. We were indeed on the way out.
My legs felt like rubber; I had to proceed with caution and not fall. Then it dawned on me: I was having one of those "disoriented and shaky" moments from an event in July, where I found myself shaking all over, being disoriented, and physically exhausted. My primary care physician checked me over, assured me it wasn't Parkinson's, and sent me to a neurologist.
He knew the minute I started telling him about my experience with shaking all over and extreme fatigue. "I know exactly what you have," he said. "And it's simple and easy to treat."
He then said I have "benign essential tremors" that were triggered by the over-stimulation of the event. I take Primodone, an anti-seizure medication, twice a day and am free from the tremors.
Until I entered that restaurant, that is.
So now I know I have to look out for myself when choosing a restaurant. It needs to have a quiet ambiance, even more than a moderately priced menu selection. Call me difficult, call me demanding, but just don't call me to a restaurant that has no noise buffers. I'm looking out for myself.

Saturday, December 28, 2013

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.

Saturday, November 9, 2013

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.

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.

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.

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.”
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
For more information contact:  
Tracy Hickenbottom
Robin Frank
(646) 797-8454
Martin Blair