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.

Another Gift from Lupus

As if having a brain fog and injecting 70 units of Humalog, instead of 70 units of Lantus, going to the ER and having the result of my body and brain going AWOL for several days, I added a new situation:  I lost a tooth.
Now, little kids look cute when they have lost their baby teeth, and have that charming little smile. But I'm an adult, and my smile makes me look like a hillbilly.
Sure, the tooth would be one that showed any time I smile or open my mouth to speak. Blame my dry mouth syndrome on Sjogren's, which a lot of people with lupus have added to their full plate. No kidding, I didn't even suspect that tooth was going to make a swan dive very soon. I bit into one of those trail mix bars, chock full of nuts, raisins and chocolate...very soft and "smushy" so I know I hadn't bitten into anything hard.
Fortunately, I found the errant tooth, still in my mouth surrounded by the chocolate, nuts and raisins. I called my new dentist and asked if I could have the dentist look at it and see what we can do. I already had an appointment for a cleaning, anyway. So she asked if I could come in at 7:30 AM. Normally I wouldn't have accepted that early an appointment, but my vanity got the best of me.
In the meantime, it's a mean time.
I didn't put the tooth under my pillow for the Tooth Fairy.

Some Lupies Have Diabetes, Too....

On Saturday night, I took my usual dose of 70 units of Lantus. At least, I thought I had taken Lantus. As I was putting the vial back in the refrigerator, I looked at the vial in horror....NOT Lantus, which is a slow release for me at night. It was Humalog, that I take in the daytime before a meal, if necessary. And on a sliding scale, per my doctor's instructions.
So, what do I need to do?
I told my son what I had done. He suggested I call the pharmacist where I get my meds. The pharmacy was closed. So I asked the friendly kid who answered the phone for another one that stayed open all night.
So I called one of the two choices, and held and held.....finally the pharmacist came on the line and after telling her of my predicament, she said, "Don't go to sleep. Take your blood glucose every two hours; if it's low, eat something with carbs, protein and sugar."
By that time, the extra strength dose had hit my body, hard. I began shaking and sweating, the usual reaction to low blood sugar. But I had no idea how long this would last, since I had taken such a large dose.
Meanwhile, my son had done an Internet search and one of the instructions was to go to my friendly neighborhood ER.
So off we went.
This was about 8:30 PM. A nurse took all my vital signs and installed a port if we needed to do any infusions. She input all the info into the computer and then said the doctor would be in shortly.
The doctor was a young woman (at my age, all doctors are young) who reassured me; this happens sometimes, and it was a good thing I had done to come to the ER. They took my reading every two hours, and on the last two hour stretch, someone came in bearing a turkey sandwich with a bag of potato chips and a glass of water.  I was told to eat all of it. Which I did.
And two hours after that little snack, my glucose was up to a normal level. I could go home. It was now past 2:00 a.m.
I went to bed and slept until 9 a.m. I felt like I had been hit by a truck. A very large truck. I read the printout Woody had looked up, and the gist of the post was to do essentially nothing for the next couple of days.
That's almost against my religion. I know that I should rest more with a lupus flare, but I resist every time. Besides feeling beaten up, my brain reverted to its former status: Brain fog. This was Sunday.
Surely I would feel better the next day, I rationalized.
Nope. On Monday, I managed to get out of bed, but I still felt lousy, this time more of a brain dysfunction than physical.
Now, it's Tuesday, and I feel better, all things considered. Even my brain fog shows it's fading away.
The moral to this story is: Always, always, look at the label on the medication. In fact, someone on my lupus support group, a former nurse, told me she was trained to look at the label three times....First, when retrieving the med from its storage place. Second, preparing to inject, and third, after drawing up the amount to be injected.
And another precaution: my diabetes medications are now in color-coded, different sized holders in the refrigerator. So far, I have had only a couple of occasions to inject the Humalog, and Lantus in the evening, which I cut back from 70 units to 50.
Mission accomplished. 

Grieving

On Tuesday evening, I had dinner with a good friend. This lady is strong as vinegar; been through so much in her life, yet she maintains an air of serenity and dignity. Until Tuesday evening. She said, "I'm not in a very good spiritual condition lately." Hmmm. That's just what I posted on the Lupies site the other day....I think. I told her I would listen, as I had no words of wisdom to give to her; no advice. Just listen with my heart. Two of our mutual friends are gone from our lives....hers more than mine, friends, I mean. Our friend Tina died of pneumonia in the hospital; we attended her funeral about a month ago. Another friend, Nancy, has been bundled up and flown to MD, by her kids, as they are afraid of her growing Alzheimer's. We probably won't see her again, if her kids have anything to do with it. (Snort.) So, what's been brewing in my muddled mind is: We're both grieving over our recent losses, and I'll add one more item: Grief about growing old-er. Nothing I can do about that. But I hate the "infirmities" of old-er age. My friend likes to sit in a booth, but man, how hard it was for me to haul my butt out of the booth. I'll have to remember I suggest a table next time we go eat together. We used to go places at the drop of a hat, excited about antique -ing. Finding new places along the road. Now, I have to consider how I'm doing that day -- never mind planning in advance. What I think is going on with both of us is not so much grieving over the loss of our friends, but also grieving over our former selves. And here I thought I had done that already! But with lupus, when it sneaks back like a thief in the night, I get blind-sided. Again, I have to go through the grieving process. And that sucks.

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