Thursday, July 24, 2014

Best Advice Ever

The good advice (original title: Le bon conseil), by Jean-Baptiste Madou, found on Wikipedia here. 

Joe Reddington has written an amazing post entitled Your past self is on your side. So do nice things for your future self:
My Google Calendar emails me. It’s incredibility good for the soul. 
When I am ill with a cold, I put a event in my Google Calendar saying “Take a moment to really enjoy being able to breath though your nose”.  A couple of months later my email goes ‘ping’ and I do.  I really do take a moment to enjoy being able to breath though my nose, it’s wonderful – you should try it now.   
These sort of emails pop up every so often.  “Enjoy being able to move your shoulder”,  “Isn’t it great not having a mouth ulcer?”...continue reading here.
I think this is brilliant. As a matter of fact, I'm going to open my Google Calendar and add my own brand of good-for-the-soul stuff. like:

  • Aren't you glad you don't look like a leper at the moment?
  • Isn't it great not sleeping with a back scratcher?
  • The Teavana cup from Terese and Emily makes great tea, doesn't it? (Please don't break it anytime soon.)
  • Oooo. All those pills in my pill box are such pretty colors...

I guess I could also put stuff in there that helps me re-assess things. Especially after yesterday's appointment: Like:

  • So how's your new immunosuppressant Cellcept working for ya?
  • Don't you just love lots and lots of prednisone?
  • I'm pretty sure that my hair will grow back where my scalp blotches were...

Thanks for the great tip, Joe.

Wednesday, July 23, 2014

It's Baaaaaack!


Sigh.

Last week I had a telephone appointment with the doctor that prescribed prednisone to ease me out of my cutaneous lupus rash craziness. When she called, I was effusive in my thanks. "I feel sooooo much better! The rash has really faded but the best thing is that I don't have to sleep with my back scratcher clutched in my fist!"

She chuckled and said that she was glad. And that was that.

Until I finished my prednisone taper and was back to my 5mg/day ongoing dose. FOUR DAYS after our phone call, yes FOUR DAYS later, I noticed with dismay that it seemed as though things were definitely firing up again. And now, another five days past that ridiculously optimistic phone conversation,  I'm sleeping with the back scratcher again.

This is not good.

So everything that was red and itchy and hot has resumed it's prior state. And there's a few new spots thrown in for good measure. It seems as though this awful thing is moving higher and higher up my neck, which is really hard to camouflage, and even harder to keep the sunscreen applied.

I'm seeing another rheumatologist today, (Paging Dr. Young Guy. Paging Dr. Young Guy. Get back from vacation already! Cease and desist spending precious family time with your wife and kids in the good ol' summertime! Julia is rashy!) I'll let y'all know what she has to say.

I think I'll go take another oatmeal bath. Has anyone tried making their own oatmeal bath without buying those ridiculously overpriced packets at the drugstore?

Tuesday, July 22, 2014

Traditional Evolution Blog: Don't Bully Me


Here's an interesting perspective on chronic illness from a young woman dealing with Stevens-Johnson Syndrome. Read what Mayo Clinic has to say about this debilitating disorder:
Stevens-Johnson syndrome is a rare, serious disorder of your skin and mucous membranes. It's usually a reaction to a medication or an infection. Often, Stevens-Johnson syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters. Then the top layer of the affected skin dies and sheds. Continue reading here
Her blog Traditional Evolution for the most part focuses on her experiences as an author. But recently she penned a very moving post:
Someone asked what I was doing that day and I expressed that my plans had been changed due to illness. They encouraged me to go anyway and I said that I would if I could, but I was unable. 
Cue a rant about their terminally ill relative, who still got out and tried to do things, even though they were sick. 
Firstly, I genuinely hope it’s true and that their bedridden, reliant on morphine relative does get out and do stuff. Because that’s awesome and in the chronic illness community, you learnt to celebrate each other’s victories. 
However I wonder if that same relative knows someone is using their illness to bully other people? I am guessing no. 
I hadn't thought about the bullying issue, which is incredibly perceptive. To use the severity of another person's illness to try to force someone with chronic illness to participate in something isn't a concept that I had thought about, but it's a valid point. A right-on-the-money assessment of some clueless folks' behavior.

Talitha goes on to list five "things I would like to drill into people":
1. It’s not a competition. No one ‘wins’ by being sicker. Trust me, if I could lose that competition, I would. 
2. No one has a right to judge anyone else’s health. Not even doctors.  Doctors should diagnose and treat. There is a special place in hell for judgemental doctors..... Continue reading here
Note: Talitha uses slightly spicier language than I do. Just FYI. Check it out anyway.

Monday, July 21, 2014

Avast, Ye Matey!

Wow. I knew Frodo was talented, but I had no idea he was the captain of his own ship! Well done, my doggy boy. Keep her between the channel markers. Remember: Red on your starboard side when heading upriver.


I think he needs a uniform.

Sunday, July 20, 2014

We Went Anyway

Have you heard about the wildfires that are raging across eastern Washington? Terrible. You can read more about them here. This dry summer seems to be shaping up as especially difficult for most of the western states; from Washington down through California. As it turns out, Terese and her sister and I got a bit closer to those fires than we had planned on Thursday and Friday.

So awhile back, Terese asked if I wanted to go on a quick overnight trip to the lovely city of Leavenworth, WA. We'd see a play in one of their outdoor theaters, stay at a fun Bavarian-themed hotel, and then zip home on Friday. Which is exactly what we did, and it was great fun.

But.

When we pulled into Terese's sister's driveway, she met us at the door with a concerned look. "Have you guys heard the latest about those wildfires?"

Um. Well, yes we had but really didn't pay close attention. Or just ignored them because dang it, we had one fun little trip planned. But we figured that we should really check into the situation closer, especially after one of the roads that we had planned on taking was closed due to the fire. Yikes. We all whipped out our phones and began googling madly. Apparently Greg had been monitoring our potential route because he had sent us along with directions which didn't include the roads closest to the fires. Terese had the very good idea to call the hotel that we were booked into to see if the town of Leavenworth was threatened.

"It's very smoky here. The air quality is not good and it's raining ash." said the desk clerk. "But the city is safe."

Hm. Then we wondered if the outdoor theatre company had cancelled it's shows, but were unable to get past the company's answering machine which told us that all tickets were non-refundable.

We debated plan B, or C, or.... but nothing seemed particularly interesting. We had our hearts set on seeing The Sound of Music in the mountains. I called John.

"Would probably be best if you didn't go, Babe," he told me.

Which meant that of course we headed east towards Leavenworth. And I'm glad that we did. It was a beautiful drive over and we yakked nonstop while munching on glazed lemon bars on the way. Mmmm......John didn't sound particularly surprised when I told him that we were disregarding his advice and were going anyway.

As we pulled into the city limits, we could definitely see a haze of smoke and when I got out of the car, brushed my sleeve against the exterior of the car door and came away with a big grey smudge of ash. I decided to follow the local emergency government's twitter feed and continued to read updates on the fires and evacuations of other cities over the next two days, but it appeared that our quaint little city would escape the flames. That night we sat in the outdoor theatre and enjoyed the beautiful temperatures, the majestic scenery, the lively musical, and.......the layers and layers of ash flakes that drifted down from the skies.

See the smoky haze? 

It felt surreal. Here we were thumbing through our play programs while other cities west of us were being evacuated and houses, a school, a church, and a hospital burned along with miles and miles of beautiful trees.

The next morning we took a quick tour of the town and headed back over to our side of the mountains.

I pray that everyone over there remains safe, and that these fires are controlled quickly.

Saturday, July 19, 2014

Friday, July 18, 2014

No good can come of this....

Terese, her sister and I are on an adventure. AND I FORGOT MY CAMERA. 


I'll tell y'all about it when we get home, but there will be no good Canon pictures. 

Sob. 

See you tomorrow. 

Thursday, July 17, 2014

Sjogren's Syndrome and Dysautonomia

Sjoggie Katherine asks:

I have been diagnosed with Pandysautonomia/P.O.T.S.  Which means that my exercise ability has been squashed by my very own Dr. Young Guy.  Since January I've been told that even if I CAN drag myself off the sofa I am only allowed gentle stretching activities.  Hello Grabber!  

So my question is:  Since Sjogren's is one of the primary causes of Dysautonomia how many of your readers have been diagnosed with Autonomic Dysfunction?  It is a new field of research so even the specialists such as cardiologists and neurologists don't seem to be up to speed.  I had to push to have the Tilt Table testing done as the cardiologist wasn't interested in exploring the causes of the tachycardia since my heart was in good shape.  Luckily I have two very good Dr. Young Guys (Neuro & Rheumy) who suggested the testing on their own. 


It's a great question. Yes, P.O.T.S and other dysautonomia are fairly well documented in medical literature. Read this published in the Annual of Rheumatic Diseases in 2012 and found here:

Autonomic symptoms are common and are associated with overall symptom burden and disease activity in primary Sjögren's syndrome
This study aimed to determine the prevalence of autonomic symptoms in a large cohort of patients with PSS and to investigate whether there is a relationship between autonomic symptoms and biological and psychosocial variables commonly found in PSS. We have demonstrated that symptoms of autonomic dysfunction are common among patients with PSS, with 55% fulfilling the criterion of dysautonomia. Furthermore, autonomic dysfunction is independently associated with ESSPRI, disease activity (ESSDAI) and symptoms of anxiety, and possibly mental fatigue. 
Many case reports, case series and other studies have reported a link between autonomic dysfunction and PSS. However, the sample sizes of these studies were relatively small, rendering estimation of the prevalence and analysis of the relationship between autonomic dysfunction and other clinical features of PSS less reliable. Analysis of the data of over 300 patients with clinically well-characterised PSS in this study enables a more robust interrogation of the relationship between autonomic symptoms and other clinical features of PSS. The multicentre design also increases the ecological validity of our data compared with those derived from single-centre studies. To our knowledge, this is the first large, multicentre study to examine the prevalence, severity and predictors of autonomic symptoms in PSS. Continue reading here. 
Autonomic nervous system chart found here. 

(*note - ESSPRI is the  EULAR Sjogren's Syndrome Patient Reported Index )

You can read more about dysautonomia here but here's a sampling:
Dysautonomia is an umbrella term used to describe various conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System (ANS) controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye and temperature control. 
The ANS is made up of two branches: the Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PNS). The SNS controls the more active "fight or flight" responses such as increasing heart rate and blood pressure.The PNS can be thought of as the "rest and digest" part of the autonomic nervous system, as it slows down the heart rate and aides in digestion. The endocrine and metabolic systems are involved as well. These systems are in balance in a healthy person, and react correctly to outside stimuli, such as temperature, stress, and gravity. When they are out of balance and do not function properly for any number of reasons, autonomic dysfunction - or dysautonomia - occurs. People living with various forms of dysautonomia have trouble regulating these systems, which can result in symptoms such as lightheadedness, fainting, unstable blood pressure, tachycardia or bradycardia, gastoparesis and more. 
Have you been diagnosed with dysautonomia? Share your experiences with Katherine and us. 

Wednesday, July 16, 2014

It's A Cell Phone

Image found here. 

Someone asked me recently if I owned any gadgets that were exceptionally helpful to me since I began dealing with autoimmune disease. At the time, I said, "Nah."

Actually I was thinking that my couch was probably the most helpful item in my house but thought that was a weirdo kind of answer. I figured since I didn't know this person very well, it would probably be fun to let her labor under the delusion that I am a normal person.

But it was actually a good question and as I went about doing my Sjogren's thing for the next few weeks, I would think about it every time I picked up a kitchen tool or a cleaning whatchamacallit. I think that I finally have my answer, and it doesn't open cans, slice 'n dice, or trap dust.

It's my cell phone.

I've been carrying one of these things for 18 years now, I believe. As the years rolled by all sorts of fancy features were added to each new model, but I ignored them for at least a decade. Or more. Because all I really wanted to do with the thing was to talk, and eventually text.

Then, Sjogren's and it's autoimmune buddies began appearing. They brought with them fatigue, a foggy brain, increased stress levels, and, well....y'all know what an autoimmune symptom package contains. I found it harder to remember things, and other tasks I put off as long as possible because each one may require me to actually stand up, walk somewhere, and spend some of my precious energy to complete it. Like this one: Let's say Terese called me and asked for the address of one of my kids. Pre-cell phone:

Terese: Hey. What's your kid's address?

Me: (Thinking that I should know these things.) "Let me get back to ya."

After which I drag myself off the couch and try to remember where I put the dumb stupid address book, then spend a few minutes checking the usual storage spots. After finding the book, I realize that said kid's address is actually incorrect because I know that this young person tends to enjoy finding new apartments frequently. Then it's back to the couch with phone book and telephone in hand to try to find kid's number written on the back of the phone book, call said kid, leave a message because this kid also is not home frequently. My kids like to be busy. "What's your address, kid? Call me back."

And on. And on. I'll bet you remember how it all goes. By this time in the process I could actually be perspiring and tired, which would make me extremely cranky because this SHOULD NOT BE THIS HARD.

Fast forward last week when Terese actually did ask me, Hey. What's your kid's address?

After which I dig out my cell phone, locate kid's addy in the contact information, choose the option to share the address and send it off to T's phone simply by hitting the SEND button.

It took me forever to figure out how to use it, but the calendar feature has been invaluable as well. Today I wanted to make an appointment for a Lulu grooming because she's looking pretty scraggly.

See?


So I get out my phone while I'm swinging in my new chair (yes, in the shade) open up the internet browser, search for the name of my groomer's salon, punch the CALL button. After which I put the call on speaker phone while I bring up my calendar. We discuss appointments as my chair as I sway in the breeze, and after arriving at a decision, tap ADD EVENT, conclude the call, and resume my nap. Easy.

What's even better, I can ask my phone to remind me of said appointment. Or prompt me to add the pet spa to my list of contacts.

I love the alarm clock feature. As long as this thing is charged, and that's another story, I can set the alarm any time and anywhere.

I use the note app quite often as well. I can't imagine how many times I've breezed right past the lengthy grocery list lying right on the kitchen countertop and end up standing in a produce section somewhere digging through my purse looking for it.

You know, that's a great deal of responsibility for a little piece of plastic and metal. I worry about losing the darned thing and then I'd be back to square one.

I could go on and on.....What's your favorite energy saving gadget?

Tuesday, July 15, 2014

SSF: The Sun and Sjogren's Syndrome

Image found on Wikimedia Commons

I know that I have published a link to this excellent Sjogren's Syndrome Foundation patient education sheet before, but in view of the sunny and hot forecast facing us here in the Pacific northwest, thought I would give it another post:

Patient Education Sheet 
The Sun and Sjögren’s Syndrome
The SSF thanks Mona Z. Mofid, MD, FAAD, Diplomate, American Board of Dermatology, and Medical Director, American Melanoma Foundation, San Diego, California, for authoring this Patient Education Sheet.

Ultraviolet (UV) radiation emitted from the sun and other light sources (such as some fluorescent lights) can alter immune function and lead to an autoimmune response in the body and in the skin. Skin rashes and disease flares
in Sjögren’s syndrome (SS) patients can result as well as ocular sensitivity and pain. In Sjögren’s, sun sensitivity is associated with the autoantibody SSA/or Ro. To avoid reactions to UV light, try the following tips: continue reading here.

Stay shady, people.

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