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

PCP VISIT

Yesterday I had an appt. with my primary care physician. Yearly checkup.
I sat in that lovely paper gown for a few moments before the nurse came in and entered some information into the computer file on  Morris, Marilyn 04/21/1938. We went over all my medications, which I had brought with me, and then she took my blood pressure and temperature. Everything okay there. So far, so good.
Then the doctor came in and she proceeded to check me over. I asked her about a small mole on my right arm; she looked at it with a light and then said it was nothing to worry about. So far, so good, there.
No flu shot, please, I said. She agreed.
Then she looked in my mouth.  Oh, man.  She stepped back in surprise. "You've got a lot of dental work in front of you."
I told her, "I'm just going to get dentures. It's cheaper than implants." She nodded. "It's the Sjogren's, isn't it?" And I told her my dentist said within six months to a year, I would have no teeth left. And after implants he wanted to do, I would have no money left: $60,000.00.
Besides, Sjogren's would make short work of whatever teeth I had implants.
So the search is on for a good dentist who will make my dentures.  According to one of the women I used to work with, during a brunch conversation on Friday, she told me about a woman in her office who had her teeth pulled, with no general anesthesia, dentures put in place, and the next day she was back at work. 
That sounds good to me.  I can take the pain; Lord knows we Lupies are accustomed to pain. 
I think I'm going next week.  Wish me luck......

Sjogren's: An evil twin to Lupus

Isn't it enough that I have SLE (systemic lupus erythematosus ) CHF, (congestive heart failure) Asthma and various and sundry offshoots of those primary diseases/syndromes, that now I have to take a real hard look at Sjogren's and what it has been doing to my body?
More specifically, to my mouth. Dry mouth. I sip on something all day, spray my mouth often with the remedy for dry mouth, which lasts oh, maybe four minutes, and I cannot cry. I mean, I cannot produce tears. I use eye drops several times a day, a brand that is used especially for dry eyes.
So it was no surprise when I went to my new dentist. My former dentist and I had a falling out; mainly it was his staff who got sideways with my daughter, who pays my dental bills. Long story. Essentially, I went to see another dentist. I had lost a tooth....in the front, top. Where it's visible. I look like Granny Clampett.
I asked him if he could re-insert the tooth, and he shook his head.  Nothing to attach it to. We talked implants for a while.
After a thorough exam, and a scan like an MRI, he gave me the bad news.  Every tooth in my mouth has cavities. Every.  Single. Tooth. So I suggested that maybe he could fit me with dentures.  Get the whole thing over with.  Okey, Dokey. He worked up an estimate, or two, really: $60,000.00 or $80,00.00.
Before we sent the estimate to my daughter in CA, we did some Internet searching for places who make dentures. Every step is itemized on those sites.
I quickly realized that it's not as easy a process as it had seemed. And my new dentist had warned me about patients who had insisted on dentures, and a week later, they were back saying, "I don't like these one bit."  Of course, he was looking more at implants and bridges.
I did appreciate him telling me, after he had decreed all my teeth were "hole-y" it wasn't my fault.  Nothing that I did or didn't do caused my teeth to be in danger of crumbling, right before my very eyes.     
So, right now, I'm in a holding pattern, waiting for the next tooth to drop.  Which it will, very soon. New dentist had told me that within six months to a year, all my teeth would be gone. Lovely.
Bad enough I have a missing tooth on top, next to my new crowns bonded together for strength, as I kept losing the temporary crowns and the dental techs scolded me about "not being careful" as they re-inserted the temporary crowns each time.  I even bought some denture adhesive to keep them in, but they still fell out.
My self-esteem has taken a nose dive, for sure.  I had a good smile, darn it. Now I've got a gaping hole where a nice white tooth had been. I'm convinced I look like a hillbilly who has been drinking too much Mountain Dew (said by some to be Hillbilly Heroin). 
One good thing: I have good bones.  Long ago, I had bridges on both sides of the bottom teeth, which were badly done and infection deemed it necessary to remove them. That was when I had dental insurance from my workplace.  Unfortunately, Medicare doesn't provide any dental coverage. So, essentially, I've been gumming my food for years without any ill effects.
TMI, I"m sure. Too much information about the dental issues I've been encountering, right? But, I suppose I'm really asking for validation, or dire warnings from all my lupus buddies.
If you were this 74 year old woman with lupus, etc. would you want to take any of the measures mentioned above?
Every so often, I think, Why bother? Let the teeth fall where they may, so to speak. Buy a heavy duty blender and eat mush. Somehow, somewhere, a bit of pride intrudes and says I'm worth it. Even if they plant me the day after I get my dentures, by golly, I've taken care of myself. 
This week, in a message to someone on the online lupus support group,  I quoted M. Scott Peck's opening line in his book that changed my life: The Road Less Traveled.... Life is difficult.
Yes, it is. I have to keep remembering that.