Tuesday, January 27, 2015

Excuses Excuses

I think a decorative pillow is a far better use of burlap than as dog food. 

I'm finding it difficult to write today.


Because my front tooth fell out. Or more accurately, the crown where my front tooth used to be fell out. There I was just innocently chomping away on my organic amaranth no-sugar-added cereal, with walnuts sprinkled on and almond milk poured over, (I know. Pretty uninspired breakfast but I have a great deal of dietary atonement to do after vacation.) when I bit down on something that was decidedly not amaranth or walnuts. Lucky for me I didn't bite down hard and also lucky that I didn't swallow the thing.

So I spit it out and there it was. Ew. I looked in the mirror and was even more grossed out because all that was left of my original front tooth was this whittled down fang. A  call to my dentist's office and a few minutes later Julia the snaggletooth was on her way for a tooth re-gluing.

So I was traumatized. Yes I was. I give y'all permission to call me a real wimp.

I was all set to attempt to write a brilliant discussion about some of the latest Sjogren's studies that I had found interesting but my thought process was completely derailed by the frightening thought that I may have swallowed about a thousand dollars worth of dental work AND the knowledge that there was no. way. in. HELL that I would have consented to wait for the thing to make it's way through my innards and then -- even though cleaned up and autoclaved -- let it be reattached anywhere, especially inside my oral cavity.

Dr. F. spent probably a total of fifteen minutes with me to re-attach the thing, ten of which were spent regaling me with stories about other similar incidents with his patients that didn't end nearly as well, (like the lady that swallowed a four tooth solid gold bridge who opted to um....recycle... the thing) and also the items that his labrador had swallowed; the most entertaining of which was an entire burlap feed sack. I told him he had to quit with the stories or I wouldn't be able to stop laughing long enough for the adhesive to set up and then I'd be back tomorrow probably having the same problem.

By the time I left his office, I just couldn't get back into a scientific frame of mind. That's hard enough even without mental images of a large dog chowing down a whole feed sack or how one would go about cleaning up a four tooth gold bridge. So I gave up. And what y'all get today is just everyday drivel.

The quest to create an actually informative post continues, however. See y'all tomorrow.

Monday, January 26, 2015

What a Bargain Thanks to Eloise

Photo mine.

As so often happens here on Reasonably Well, I feel the need to begin my post with this disclaimer: I am not fabricating, exaggerating, or elaborating my account of the following event. It is true in every detail to the best of my recall.

So. Brace yourselves for one of "those" kind of posts. Y'all ready? 

Last weekend, our parish celebrated the feast day of the saint for which we are named: St. Thomas Aquinas. The festivities always include a fundraiser dinner. This year's dinner menu included a sumptuous prime rib and crab dinner accompanied by a silent auction. One of the items up for bidding was a two-for-one offer on our church's cemetery plots. 

Yes. You read that right. Hey -- two for the price of one is a great deal. Have you priced cemetery real estate lately? We're talking bargain basement prices here.

I thought his choice of wording was profound. 

Father O., a very spiritual young man with a great sense of humor, has for the past several years made a sign (which I've tried to re-create above) and placed it prominently with the other auction items such as religious art pieces, home made goodie baskets and vacation weekends. 

Cemetery plots are not usually hotly contested auction items. This year, however, things picked up considerably and the lucky winners were John and I. Yep. We are now the proud owner of two plots in a prime location in the Holy Cross Cemetery. Oh, yeah. Responsible planning adults, that's us. But I have not always been that kind of person. 

For most people, a purchase like this is really not particularly earth shattering. People are born. People die. And when they die, if they would like to be buried, they need a place to do so and it usually goes like this: Find a cemetery. Pick out a spot. Buy the thing. Boom. Done. 

I've had a really difficult time getting to the point in my life when I could discuss this sort of thing calmly and rationally. Previously, any discussion even remotely related to my death, or even more dramatically, John's death, typically would result in me sticking my fingers in my ears and singing some tuneless la-la-la song as I beat a hasty exit from the room. If John wanted to talk about a will, or our life insurance policies, or even show me where he has everything about our finances documented, I wanted to just run away. I am not kidding.

I'm not certain why. I believe that there is some kind of existence waiting for us after our soul leaves our bodies, and thinking about it doesn't provoke this response, and I don't think that I have anything other than the usual fear of my death specifically. So when John and I began a discussion about where we would like to be buried some day, and I found myself reflexively poking my index fingers in my ears, I decided that it was high time to explore and resolve my squeamishness about making some decision that dealt with the end of our lives. And I'm happy to report that after considerable thought, I have found a kind of peace about it all, and the memory of one person in particular eased the change in my thought process from cowardly to a tentative acceptance. I'm so thankful that I have this very old memory to recall when I needed it most. 

Her name was Eloise and she was a sweet tempered, petite, elderly woman with a headful of fine curly white hair and a skeleton so fragile that transferring her from chair to bed could be enough to cause a fracture. Although her body was failing her mind was not, and she remembered accurately the names of each of us who cared for her back at that hospital in the late '70s. Eloise was hospitalized for a lengthy period of time and checking in with her as the rest of my patients were sound asleep became one of my favorite times of the night shift. Tucked into her bed with a crocheted throw covering the stark hospital linens, the harsh overhead lights turned off, and in the rosy glow of her favorite rosebud enameled bedside lamp with tasseled pink shade, she would pat the chair next to her bed and invite me to tell her everything about my day. Or my family. Or my new boyfriend. Or......anything other than the cancer that was taking her away from us far too quickly. I loved sitting there for those conversations -- and her.  

As Eloise declined and became closer to her death, unbelievably she didn't lose any of her ability to speak with clarity even though her pain medication dose kept climbing. She was drowsy, yes, but each word was enunciated perfectly and carefully. 

I'll never forget the night that she died. She had pushed her call button shortly after one of our visits during which I administered pain meds into her IV, rubbed her frail legs and arms with perfumed lotion, and settled her in for the night. Usually after our routine was completed she would doze off for three or four hours at a time, so I was surprised to see her call light blink twenty minutes or so after I had been in her room. Was she in pain? Had I forgotten something? I entered her room to see her sitting up in bed with sweet smile on her face. 

"Oh, Julia. I'm so glad that you had time to stop in. I want you to meet my family. Isn't it wonderful that they're all here?" She made a sweeping gesture that indicated fully half of her room at the end of her bed. 

"This is Julia, everyone. I shall miss her and all the other nurses."

I slid my hand over to her wrist without moving my eyes from her face and took her pulse. It was slow, but steady. She continued to smile at the ghostly gathering, so I directed my gaze down to her chest and counted the shallow but regular respirations, then to the empty space at the end of her room and said tentatively,  So nice to meet you. 

"I think they're here to take me home," she told me then turned again to look at her family. "Are you here to take me home?"

Her smile lost none of it's brightness as she weakly dropped back against her embroidered pillowslip then sighed happily.

"Have you come to get me on that beautiful white horse?" She closed her eyes. 

I quickly glanced up. I found myself wishing that I could see what Eloise was seeing. Under the light pressure from my fingertips, I could feel her pulse begin to drift into a slow irregular beat and could hear her respirations become shallower. I pushed the call bell, and a co-worker poked her head in the door.

Nancy. I just want you to know that I'm going to spend some extra time here with Eloise tonight. Maybe for quite awhile. and gave my nursing assistant a meaningful look. Nancy was one of those intelligent and perceptive women that needed very few words to understand my message: Eloise was dying.

I don't know how long we sat together in peaceful silence, just she and I. I seem to remember that it wasn't a very long, or perhaps the experience was so comforting that time passed quickly. But at some point, she just wasn't breathing anymore, and her pulse stilled. Her lovely face turned that very unusual pale shade that happens after death and took on that unmistakeable look of something that was truly inanimate. 

I sat for a few minutes before I summoned my co-workers to begin the chain of events that follow in a hospital after someone dies; wanting to find some explanation or meaning for the indescribable feeling that surrounded what I had just witnessed. I still can't find the right words to convey it all except to say that I knew I had been gifted with the privilege of the tiniest glimpse of what death looked and felt like for this amazing woman. I tucked that memory away, only to be found in difficult times when I find myself or others questioning the existence of a hereafter. And if I take time to quietly re-create as much of that episode in my memory as I possibly can, I find a peace of sorts which comforts me enormously. 

So thanks, Eloise. Yesterday I smiled as I handed over the check for my own gravesite. I wouldn't have been able to do it without your help. 

Sunday, January 25, 2015

Another Win for Venus: Australian Open 2015

Image found on Wikipedia

My favorite tennis pro is playing winning tennis these days. Venus Williams and her sister Serena have moved on to the Australian Open quarter finals:
......She is through to the fourth round of a Grand Slam tournament for the first time for four years. She now plays Poland’s Agnieszka Radwanska. 
“That feels fantastic especially when things happen in your life that are not in your control,” Williams said in reference to her struggles with Sjogren's syndrome, an incurable auto-immune disease that can cause joint pain and fatigue. 
“But I don't want to stop now, I want to keep it going,” Venus added. “This little cat has a few tricks up her sleeve.”
Go get 'em Venus! You can read more here.

Saturday, January 24, 2015

Unexpected View

After a restful night's sleep,

I woke up to this.

Um. Frodo....would you mind pointing your hindquarters in a different direction?

Friday, January 23, 2015

Sjogren's Forum: Newly Diagnosed

Are you newly diagnosed? Dr. Nancy Carterton coauthor of "A Body Out Of Balance" writes a blog entitled Sjogren's Forum. She recently answered this question that many of us have asked before:
Q:  I have been recently diagnosed with Sjogren's and have been suffering with
severe symptoms of dry mouth and sialadenitis, etc.. I have an appointment at
UCSF sjogren clinic in a few weeks. I don't have a treatment plan and am
struggling with "putting out the fire" of symptoms right now. I need direction and follow up on my submandiblar gland. I do not have an ENT. Any guidance or help is appreciated. Diet and eye drops are not enough. 
A:  A good place to start is the Sjogren's Syndrome Foundation (SSF ) www.sjogrens.orgMany resources are available including a DVD, Product Resource Booklet, Support Group contact info ... to name a few. 
There are a growing number of on-line resources and communities available to explore, such as http://www.reasonablywell-julia.blogspot.com. This is a Blog and Resources provided by an RN who herself has been on the journey.
Putting together a team of medical guides depends on what specifically one needs at a given time in the journey of discovery. Continue reading here.
So. Um.....I have to confess that I was surprised and delighted that Dr. Carterton listed Reasonably Well as a resource. But it's only one small item in her list of resources and strategies. Head over there to read it all.

Thursday, January 22, 2015

Peripheral Neuropathy -- Again

Zombie portrait found here

Guys. I feel like a walking zombie lately.

I've definitely chalked some of my zoned-out spaciness to recovering from our trip; but I think that this particular fogginess has a different quality than my usual post-vacation crash. It's hard to explain but after this many years of autoimmune fatigue and brain fog, I know what THAT feels like. And this isn't it.

I also suspect that I know what's causing it all. It's complicated. Ready for a long story?

Over the past six months or so all sorts of things have happened to this old body of mine, the biggest being the symptoms from spinal stenosis and the laminectomy that followed. As I healed from the surgery and the compression was relieved on those nerves, I realized that the radiculopathy from the stenosis was masking other neurological problems.

Gee. What a treat.

Make no mistake -- I'm thrilled with the results of my laminectomy. I can walk for any length of time without that terrible radiating pain and numbness in my butt and leg and foot. But the neurological problems that I'm having now have nothing to do with those large nerves that exited my T4 and S1 vertebrae.

When the major pain and numbness went away after my surgery, it unmasked other pain that was not caused by the stenosis: peripheral neuropathy manifested by generalized burning and pain in my feet along with the bizarre sensation that the skin of my lower legs is vibrating. Buzzing. Strange. Worse at night just when I'm trying to sleep.

I have been dealing with PN for quite some time, although to a lesser degree than lately. You can read my earlier post addressing this issue written back in January of 2013 here.

The result is that I have added Neurontin (gabapentin) to my medications, and I have to say that it has indeed reduced my symptoms. But unfortunately along with the good, came my dopey sensations. I have let my doctor know about it's effects, and hopefully after continued use the side effects will decrease.

In the meantime, well....don't be expecting many posts that are coherent.

Do you take gabapentin? How has it affected you?

Wednesday, January 21, 2015

Pain Strategies

I saw the link to this infographic on Twitter yesterday and thought it offered simplistic yet helpful reminders for those who are managing their chronic pain. Found on APMhealth.com:

Tuesday, January 20, 2015

So What's Going on Now?

This one's my favorite. 


I'm frustrated. I've dumped over yet another glass of water from my nightstand. Luckily this time there were no electronics in the splash range and the only cost to me was a few minutes of lost sleep as I stumbled over to the linen closet for a towel to mop up the mess.

I've tried using all kinds of sippy cups which are useful in avoiding the spill factor, but not the clumsiness one; resulting in me scrambling from bed to retrieve the cup as it bounces and rolls after I whap it off the table.

I'm concerned about two things one being the obvious: that I'll eventually fry my phone as it is always placed next to my water glass at night. The second is concern that I seem to be knocking things over more frequently these days and feeling more clumsy in general.

I drop things. My hands wobble when I try to eat things. I've always been prone to goobering food down my front as I eat, but I seem to be getting worse. As I walk down hallways, more often than not I'll hit first one side of the corridor then the other like a bumper car.

I'm thinking that this is something that I need to discuss with my doctor. Is it the result of some new medications that have been added to my regime? Is this caused by my disease? Or is it just the way I am?

I'll keep y'all posted.

Are YOU wobbly?

Monday, January 19, 2015

UII:What's it All About, Anyway

Jennifer Pettit, sjoggie and author of the blog UII - Understanding Invisible Illnesses has written an excellent powerful post.

Jennifer and her husband are a vibrant young couple immersed in the usual challenges for those in their age group: education, jobs, and looking to start their family. What's unusual, however, is that autoimmune disease has made many if not all of these challenges even more difficult to overcome.

Read this, then go read the post in its entirety:

We have a lot of expectations in (and of) this life.   
For many of us, those expectations include having kids and building a family.   
Obviously, this has been a topic of great importance to me lately, for at least the last 20 months of trying to conceive at a minimum.  At the outset, I had some pretty basic expectations of the stages involved, and what choices or options or components there might be with each one. 
This is your first glimpse into how my brain works, isn't it.  Yes, I think in flowcharts, lists, and graphics - so what ;) ..... continue reading here

Sunday, January 18, 2015

Breathing Deeply

Ahhhh. It's so good to be home. Back to our wonderfully delicious moisture filled atmosphere, green mossy trees, and foggy wintery days. Resting up. See y'all tomorrow.