Thursday, August 27, 2015

Checking in

Hi everyone! I'm still in taking-care-of-the-folks land. But wanted to thank everyone for their good thoughts and encouraging emails. 

As every adult of a certain age knows, reaching that pivotal point at which the carer-caregiver roles reverse is a difficult thing indeed; but we are fortunate to have a large family all of whom are willing to help and support each other. 

So we are making good progress in assessment and planning. 

Thanks also for the prayers and know that each of you is included in my prayers  every night as well. 

What? We have to take time to play, too...

Tuesday, August 25, 2015


Sometimes it isn't fun to be all grown up. And making decisions.

We are spending some time with our parents; they are aging as are we all, but have reached a point at which some assessments and plans need to be made.

I may be rather preoccupied for the next few days, so if I don't post daily I know y'all will understand.

See you when I see you.

Best. Selfie. Evar.

Don't ask. It's a long story.

Maybe I'll explain after another round of blackberry blasts.

Monday, August 24, 2015

With Apologies to Macy Gray: I Try (To Be a Nurse)

Gee. Sometimes I really miss the days when I was still working as a nurse.

But then...

After watching this very entertaining parody video I'm thinking not so much.

Video by ZDoggMD who obviously has to be an overachiever as a a Stanford hospitalist and founder of the revolutionary Turntable Health. Which deserves a blogpost of its own in terms of offering a very different vehicle for providing primary care. But I digress.

Actually I'd give my right arm to be capable of putting the scrubs on and tossing my stethoscope around my neck. Dumb stupid autoimmune disease.

Enjoy. Found on GomerBlog.

Sunday, August 23, 2015

What a Trip

I'm taking a flight to see family soon; and as such I've started my highly refined packing method: As clothing for the trip comes through the wash that I want to pack, I throw it on a pile on my dresser. And the night before my flight I grab it and throw it into my suitcase.

Hey. It works for me.

So after watching this video which shows exactly what happens to your luggage after you check it at the airport, I feel vindicated in my method since after all that tossing and turning and zipping around, why even bother folding your stuff?

Check it out: (Well, everyone except Terese should check it out. Terese? Girl. Don't watch - it'll make you all barfy.)

Saturday, August 22, 2015

Your comments are incredible: Friends and Chronic Illness

I don't usually re-publish old posts; but one in particular is especially interesting to me. Not because I've written anything extraordinary, but because my blog readers have. My post from July 21, 2010 entitled 'Have you lost friends when you acquired a chronic illness?' is one of my most popular even five years after it was written. The very best and most insightful part of this post, however, is found in the comments that follow it. Here's a section of my post but be certain to scroll to the end of the piece to read the reader comments which contain honest emotions stated so eloquently.

I received an interesting question the other day from a reader who asked why some of her friends after learning of her Sjogren's syndrome diagnosis just don't GET IT. She shared that she had an incredibly supportive husband, but:

Most of my friends, though, don't remember that I have a "thing", which is fine except when I can't participate in something because of the way I'm feeling or maybe I can do something for a short time. They don't remember my "thing" and keep asking me to do the particular activity. For some reason I hate saying "I have an autoimmune disease" or "I have Sjogren's syndrome"...... And because my friends don't remember what I've told them before, they make me go over the whole thing again, with a puzzled look on their faces as I explain, etc., as if they don't see the problem. And then there are always those friends who quiz you on your lack of participation in an event, and then when you finally start to answer them, their eyes glaze over.....
Anyway, most of the blogs I read are from people, like you, who talk about the wonderful, supportive friends they have. Maybe I need new friends! :-)

First, I want to apologize if I have given the impression that all of those folks that I have called friends in the past are still part of my life now, because to be honest, many of them aren't. They, like many of the reader's friends, seemed unwilling or unable to comprehend my disease and when I stopped participating in activities that we shared, they slowly just dropped out of my life. When I happen to meet one of them somewhere, they will inevitably ask politely, "How are you?" and fully expect me to simply smile and reply that I'm fine. Which is what I do and then we both move on. 

I have felt your frustration and disappointment, really I have. It hurts when people that say they care about you don't seem to want to take any initiative or make an effort in understanding the enormous changes that your body is going through, doesn't it? ...continue reading here

Friday, August 21, 2015

I Was Not Going to Get Tanked

Last night when the waiter asked if I'd like a small or large margarita, I confidently told him, "Large, of course.."

So when he set a FISHBOWL FULL OF MARGARITAS in front of me, I was incredulous.

"That's not a large - that's an aquarium!" John declared and immediately texted photos of me and my fish tank full of salty and limey goodness to all of our kids.

Image found here. 
Yeah. It looked THIS BIG.

What's that? Did I finish it? Are you kidding me? Even I wouldn't be that silly.

Thursday, August 20, 2015

American College of Rheumatology: What to Know Before You Go

I remember that very stress-inducing first appointment with a rheumatologist. Had I read an article similar to this one, I may have felt better prepared:

What to Know Before you Go
Symptoms with unknown causes are scary enough. Your first visit to a rheumatologist shouldn’t be. Like any new relationship, preparing for the first meeting can raise a lot of questions and maybe some nerves, so we asked a few rheumatologists what they would tell new patients to expect.
Before your appointment…
Arm yourself with the details of your own story. Spend some time thinking about your symptoms in as much detail as you can. These details will help your rheumatologist immensely. Some rheumatologists suggest thinking about a timeline of your symptoms.  As you prepare for your appointment, try asking yourself the following questions about your symptoms:
  • When did they begin?
  • Where were they localized?
  • How long did they last?
  • Were they triggered by something specific?
It is also very important to make note of any medications you take regularly, as well as ones you have tried specifically for your symptoms. It can also be helpful to call your regular care provider for copies of recent lab work, X-rays, etc. and your full medical history. This can help eliminate duplicative testing.
During your appointment…
Be prepared for a conversation and exam. Your rheumatologist will ask a lot of pointed questions about your symptoms. Some new patients are surprised by the volume of questions during their first visit! Some questions may even seem unrelated to your symptoms, but rheumatologists are like detectives: they need to collect all the evidence they can.
After all the preparation for your appointment, meeting with your rheumatologists for the first time may feel like the finish line, but it is important to understand that this is the first step in a journey. Many rheumatologists will likely schedule a follow-up appointment to review lab work or imaging results. Patients, like Shanelle and Christine, often form long-term relationships with their rheumatologists, and consider them a close partner in their health care. Now that you know more about what to expect, you and your rheumatologist can focus on what matters: getting well. Continue reading here. Bolding mine. 
I agree wholeheartedly with their reminder that the first appointment is the first step in a journey. Did you, as I did, expect all the answers to your health concerns immediately? Now of course I realize what an unrealistic expectation that was, but at the time I came away somewhat frustrated at the thought of more tests, more appointments, and elusive definitive diagnosis. 

Ah, but the reminder that getting answers when dealing with autoimmune diseases is truly a journey is invaluable advice. 

Wednesday, August 19, 2015

Cue Handel's Messiah, Please

When I left my appointment with the orthopedic surgeon who will be doing my knee replacement surgery, I was clutching a thick spiral notebook crammed with all sorts of stuff. So I've been going over everything, and saw the information about my surgery preferably being done under spinal since it appears that spinal anesthesia contributes to a decreased incidence of post operative infection and better pain control post operatively when compared to a general anesthesia.

Interesting, I thought. I did not realize this; thinking that surely a general anesthesia would be preferable mostly because I would think patients would not want to be aware of the sounds that take place during the surgery. But dang - better pain control and fewer infections? It's hard to argue with that kind of logic and I've pretty much reconciled myself to the strong likelihood that I'll be receiving a spinal. And a bonus: I've read that patients are also frequently given IV sedation and that are offered the opportunity to listen to music during the procedure. Which both sound like excellent ideas, to me. Count me in for sedation and my favorite music blasting through a set of headphones.

But guess what? The patient surgical experience only gets more interesting, people: yesterday an article entitled, "Music Improves Some Postoperative Outcomes," published online here on Medscape Nurses. (This site requires you to register for free before reading.)

Check out these intriguing excerpts here but head over to read it all here. Bolding mine:

Surgical patients who listened to music were significantly less anxious and more satisfied postoperatively compared with those who did not, according to a systematic review and meta-analysis of data from 72 trials. They also needed less pain medication and reported significantly less pain, Jenny Hole, MBBS, from Queen Mary University of London, United Kingdom, and colleagues report in an article published online August 12 in the Lancet. 
The analysis included randomized controlled trials that compared any type of music initiated before, during, or after surgery with standard care of other nondrug interventions in adult patients undergoing any form of surgery, excluding central nervous system or head and neck procedures. The outcomes of interest were postoperative pain, analgesia needs, anxiety, infection rates, wound healing, costs, length of stay, and patient satisfaction. 
Music played preoperatively was associated with the greatest reduction in pain, analgesia, and anxiety, followed by intraoperative and postoperative music, according to the analysis. 
"Music reduced pain, even when given under general anaesthetic, but the intervention had an increased effect on pain when patients were conscious," the authors report. 
"Cognitive activities such as listening to music can affect perceived intensity and unpleasantness of pain, enabling patients' sensation of pain to be reduced," the authors write, suggesting a possible mechanism to explain the effects of music on outcomes. 
"Another potential mechanism could be reduced autonomic nervous system activity, such as reduced pulse and respiration rate and decreased blood pressure." 
On the basis of their findings, the authors believe that "sufficient research has been done to show that music should be available to all patients undergoing operative procedures." Patients should be able to choose the type of music they listen to, but the music must not interfere with the medical team's communications with each other or the patient, they stress. ........continue reading here
I'm thinking that the Hallelujah Chorus from Handel's Messiah would drown out almost any kind of racket drummed up by a surgical team, wouldn't you agree?

Do y'all have any other musical suggestions?

What would YOU listen to during a surgery?

Tuesday, August 18, 2015

Triple Crown Julia

Today, I'm at the dentist.  Getting not one, but three crowns. 

Whoa. THREE. I know, right?!