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?

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.

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.

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:

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/

Lupus presents a surprise

 My PCP was doing my yearly checkup when she paused and said, "You have a lump in your breast." She turned to enter that information into my chart. 

My heart skipped a beat. WHAT? A lump in my breast? 

She said it was here...and she led my hand to the spot and sure enough, there was a rock-hard ball of something in my left breast. 

"It's probably nothing, but you need to go have it checked out." 

So she made the appointment to have an aspiration done at the Breast Center in the hospital downtown. 

I tried not to fret, but I was understandably worried. The appointment was in a couple of days, and I tried not to think that was because my case was "urgent"....which was probably not true, at all. 

I liked my doctor, a woman, and she explained everything before we proceeded.  I got to watch the monitor as she did it.  Like the time I had arthroscopic knee surgery, I watched on the monitor, and since I told them that I was in Risk Management at this very hospital, they proceeded very carefully, explaining things as they went along. I even corrected the tech who was putting the mercurochrome (?) on my leg and said, "it's your left knee, right?" And I said, "It's my left knee, CORRECT."

First thing she said was that she thought it looked like it was a fluid-filled cyst, and when she inserted the needle and began pulling it out, I could see the fluid being drawn out and the little pin hole closing up.  TA DAH! All done. 

Or so we thought.

"Well, we have some blood in the syringe, and some debris, so I'll have to send it off to pathology."

Okay, no TA DAH. I thought. First, I asked, "Why is there blood in there?" We don't know yet.

Second, "What is debris?" Well, it's non-specific junk the body produces, like when you leave a glass of water out on the table for a day or so, it collects minute particles from nowhere....that's what debris is.

"So what happens now? Will it come back?"

There's a 50-50 chance of it coming back, sometimes in a day or two, next month or next year or never. We'll just have to wait and see.

"Well, I'm not willing to do this again and again.  Can we have a lumpectomy?"

There's no lump right now. You'll have to talk to Dr. So and So....

 So, I'll hear either by Friday or Monday -- seems that a blood workup takes longer than a core biopsy for some reason. And when they call me, they will tell me what comes next, according to the results.

I can tell you one thing:  I know where my insurance money is going.  The Center for Breast Care (I think that's the full name) is located in the new building attached to the Downtown hospital.  (Names are being withheld) It is some kind of swanky spa atmosphere.

Marble topped tables with huge vases of artificial floral designs in them, lots of tapestry straight-back chairs, oriental rugs on wood floors, classical music on the overhead intercom.  When I got called to the back of the Inner Sanctum, I was given a "cape" (not one of those tacky hospital gowns, but a purple cape with velcro, so I felt like The Caped Avenger or something) and escorted to the dressing rooms area.

Again, all carpeted, marble topped table in the center of the room, with tastefully arranged dressing rooms at the sides, with a key to lock your valuables inside and wear the key on your wrist via a cord. Then you wait again in another area and somebody comes with more paperwork, more explanations of what will follow, and then you are called into the treatment room.

After I was all through, I went back to the dressing room, relinquished my Caped Avenger outfit, resumed my ordinary disguise, paid my copay and left. The bill was well over $1,000, which I hope to hell Medicare pays in full. 

I'm a little sore, but they told me I would be, and it's not all the time. Just occasionally I know I've had some work done there. 

Not to worry. The tests came back negative. 

Marilyn 1, Lupus 0. 

I've been AWOL

I've been fairly lax in posting here on my Lady with Lupus blog. Mainly because, thank God, Lupus has not bitten me lately...(Knock on wood) and I've been busy doing things I can't do when I'm in the midst of a flare. You all know about that, don't you?
Sjogren's Syndrome kicked me in the butt last November. My teeth suffered so badly from the dry mouth SJ produces that I had to make a decision: Either keep letting my teeth fall out or get dentures.
 Dentures are expensive. However, my health care is expensive, too, since I realized my teeth were sending poisons into my already burdened body and making my overall health suffer.
 I went for an evaluation to a place a friend had recommended. They explained everything in detail, how this is a process and not an event, and --ahem-- the total cost, to be paid up front.

My dear daughter in CA agreed to pay for it, bless her heart. So, we began the process.
The initial pulling, grinding and sewing took a couple of hours. I was of course, given numbing shots, you know the kind, where your face and lips swell up to the size of a football and when you drink water, it dribbles out of one of your mouths. Plural. I was told "there will be blood" and they weren't kidding. I coped with that during my waking hours, but when I was asleep, I colored my pillowcases red.
Took the stitches out a few days later; they were already coming out, anyway. The dentist said he had never seen anybody heal as rapidly as I have. Huh. And I have lupus and diabetes. How can that be? But it is true; he's amazed. Of course, I wanted my dentures yesterday, not now. But the assistant placed about a Cadillac-sized dentures in my mouth with instructions to learn how to take them out and re-insert them. I had no problem with taking them out. I couldn't eat or talk with the darned things.
But, ever mindful this is a process, not an event,  I plodded along. We passed the six month mark Tuesday, with me becoming quite proficient in insertion and removal of my new pearly-whites. I experimented with different brands of denture adhesive, but none of them kept the bottom plate from sliding around.
What to do? Heh. Well, we had talked about implants....they could insert posts into the gum line and kind of "hook" the lower plate on the post.
Tuesday was the day. The day the dentist planted two metal posts to have the bone grow around and make stable. Then, in six months, we can put the posts on for the denture to fit into.
Today is Thursday. I look like I've been in a bar fight, with bruises around my mouth and chin. I feel like I've been in a bar fight, too, since the pain killer prescribed for me right after the surgery, proved to be one that I have adverse reactions to. I began shaking all over. It wouldn't stop. My muscles twitched and jumped and I found it hard to walk. Son had to help me into the bathroom. Into the kitchen, where I insisted I could make my own soup. I tried to sleep, but didn't get a wink of sleep all night. But I made up for it on Wednesday, taking one nap after another.
Today, I'm finally not shaking. Being a diabetic, ever mindful of how my body reacts to low sugar levels, it was hard for me to determine whether or not I was having a blood sugar dive in the middle of the night. I had to get up, shaking as I was, and take my glucose reading.
Ha. Not low blood sugar; it's still the blankety-blank pain killers. I went back to bed. So yesterday was a blur. I must say, too, that my brain was in a fog. Similar to one of those Lupie fogs we all get from time to time. I was under stress; my body had been assaulted; and I shouldn't even try to make sense to anybody, when I couldn't even form a complete thought.
So today, so far, is going better.
I have to admit, though, I'm getting tired of all this dental stuff. I want my dentures to fit YESTERDAY. And without denture adhesive, which leaves a tacky residue in my mouth and I have to get rid of by drinking warm liquids.
I go back on next Thursday to have the stitches taken out. Looking at my former experience with taking sutures out, there won't be a whole lot of "taking out," since they had fallen out, anyway, or at least part of them were gone. I hope this takes the same path.
Okay, in six months, I go back to have this process finished: they will put the metal posts inside the pocket they've already made, and then my lower plate will be stabilized.
Six months! I will have to cope with this for another six months. And the dentist warned me about using too much dental adhesive, but how else can I keep the lower denture from moving? Heh. Bring on the Poli-grip. Industrial Sized.
Well, they told me at the beginning this was going to be a Process, not an Event. Don't you just hate it when somebody tells you something like that, and they're right?
Six more months.
Sigh. I just hope this doesn't bring on a big ol' flare.

PS: I also blog at another site, mostly on writing issues, but I invite you to put it on your list to check out, because every once in a while I also whine on that blog...but not as much as here.
It's authormarilyncmorris.wordpress.com