Wednesday, July 30, 2014

SSF New Blog Post

Who knew showers were better than baths for our eyes? Awesome shower curtain found here

The Sjogren's Syndrome Foundation blog Conquering Sjogren's has a new post entitled "Dry Eye Lifestyle Dos and Don'ts:
As anyone with Sj√∂gren’s knows, many things can exacerbate the discomfort of dryness, while there are other factors that can either soothe the dryness or advance a condition of moisture that can prevent it. 
Here are things you can do on a day-to-day basis that can alleviate your symptoms and help you feel and look better. Continue reading here.
This information is provided by Robert Latkany, MD
Author of "The Dry Eye Remedy" and Founder & Director of the Dry Eye Clinic at the New York Eye & Ear Infirmary.

Tuesday, July 29, 2014

Packing and Unpacking

We had a great, relaxing time out at the coast last weekend. But since we were traveling with Terese and Greg and their family, it also was quite entertaining. Like, when I wanted to get a great friend photo with Terese. This should have been a simple thing.


Aww. Just look at us: Standing shoulder to shoulder. Together. Looking ahead bravely at the future. (Cue sentimental chick flick soundtrack.)

But.


Greeeeeeeggggggggg!!

And.


Juuuuuuuliaaaaaaaa!!

We had a persistent issue with photo bombing. Tsk. Like my new hat? I think it's pretty spiff.

YOU can explain why there was a police officer involved in our last dinner together for the weekend, Missy Terese. I'd put up a picture, except that I couldn't crop out the officer's name and badge number. True story. Honest. Cross my heart and hope to die.

Overall, it was a fabulous mini vacation.






So things went right along brilliantly, until we began to pack up our things to return home.

Before we left for the coast, I slipped this necklace over my head while thinking how much each item on it meant to me: the diamond from our engagement ring, the crucifix purchased after haggling endlessly with a jeweler in Cabo San Lucas, and the medal discovered in a very old and wonderful  mission gift shop in San Francisco. I wear this thing almost every day and when I'm stressed my hands automatically move to hold each piece and I feel better.


I thought how precious it was to me, and how devastated I would be if I lost it, or it was stolen, and so I began to remove it. But.......I told myself that something like this was best worn and loved and used, not sitting around in a jewelry box, and I let it drop back into place around my neck.

Which meant that serious panic erupted when I couldn't locate it as I gathered my things to take them home.

Seriously.

I WAS devastated. We searched every square inch of the hotel room, our friends' hotel rooms, we checked at the hotel office to see if someone turned it in, we searched the restaurant where we had dinner the previous day. No luck.

But I determined that I wasn't going to have a total meltdown after such a wonderful weekend and began to remind myself of various perspectives on the situation:

  • That if I had to choose between the diamond that John gave me and JOHN, well......the choice would be obvious. Or: 
  • That it was a thing. Not a person. Or:
  • That if I had to lose something, I would rather it would be a piece of jewelry rather than something far more important to me such as my lung or heart or kidney function. 

Yeah, well. This only worked minimally. When we arrived home, we began to methodically go through every item in our luggage. My heart stopped when I took the last piece of clothing from my suitcase and There. It. Was. Just lying at the bottom.

I screeched and snatched the thing, kissed it, and put it on. I don't think I want to take it off for awhile. I'm thinking that this was actually a pretty good experience for me in that I had an opportunity to fine tune some of my values AND not actually lose my necklace.

Sigh. I love happy endings.

Sunday, July 27, 2014

So Good


  

Sjoggie StAHmer: Mommy Guilt Takes a Vacation


I thought this post from Sjoggie StAHmer was particularly good:
7 Things My Daughter Gets Out of Me Being Chronically Ill 
My mommy guilt has taken a vacation lately. It could be because I haven't had many "bad" days recently, so I haven't had many opportunities to feel the guilt creep up on me and nestle into my chest as I lay on the couch. Or maybe I've just matured a bit. Ha! My bet is on the first one! I recall a few years ago, a helpful reader sending a very special comment my way that was so uplifting in regards to raising a child while dealing with an auto immune disease. I still remember it and without the haze of mommy guilt hanging over me I can now see the wisdom of it. Anyway, on to my list...continue reading here
My post yesterday was about um....food. Treats. Mmmmmm...blueberry bars.....

.::Blink::.

Actually it was supposed to be about finding the silver lining in my autoimmune cloud. It appears that Kristin has been thinking along those same lines. Check it out.

Saturday, July 26, 2014

Tasty Side Effects

Whew. My cutaneous lupus is receding slowly but surely. I'm sure this is largely due to the dose of my second prednisone burst and taper. It's a bit too early to tell if the Cellcelpt has any effect.

We all know that prednisone is a very very mixed blessing. Bless you, whoever invented prednisone.

I love the therapeutic result after ingesting those bitter white pills: itching, redness, joint pain magically fade. And I am currently enjoying the nervous energy that accompanies them as well. But, dang. The risk of osteopenia, diabetes, and a myriad of other nasty side effects of it's long term use can't be ignored. When I'm on these doses of pred, I have a tremor. Which is not fun for the most part.

But.

Yesterday, it came in rather handy. I dolled up in a long sleeved blouse, a hat, and sunscreen and ventured out to our yard and realized that we had some blueberries that were just begging to be picked and devoured. Using my super-pred powers, I had those puppies picked, rinsed, cleaned, and drained within minutes. I planned to bake a batch of blueberry crumble bars, and some refrigerator-dough macaroons embellished with a chocolate dunking and drizzle. I think I'll take them with us when we head out to the coast later this weekend.

No energy left over for the apple pie. Ah, well...

So my shaking hands made the dunking and drizzling a breeze. Not pretty -- but got the job done.

Yes, Terese. These are going out to the coast with us. But I only made one dozen. 

And it was a snap to crumble and sprinkle the crust and topping for the blueberry bars.


Every cloud has a silver lining, they say.


Oh, yeah. Love those silver linings.

Friday, July 25, 2014

Schnauzer Shave

Poor Lulu. You may recall that I posted earlier that my poor pup has been very very over due for a trip to the groomer.

She looks exceptionally scruffy here because she was still wet from her bath and I hadn't brushed her yet. 

Yeah.

So when I dropped her off with Jordan, she ran her fingers through her very unruly fur. "Hm. Lots and lots of tangles and knots!"

Sorry. I know. I was preoccupied with a few other things....

"Oh, no worries. We'll get through this. It may take some extra time, though."

Why?

"Well, it just takes a lot of time to untangle and clip all these things. Lulu won't be happy about this so I'll have to take extra time and care with her."

Ok. Well.....what about we go with the nuclear option trim?

Jordan laughed. "What's that?!"

A buzz cut. A shave. Would it be easier for her if we just started over? To just cut it all off and get back on track with regular grooming?

"You want me to give her a short cut everywhere?"

Sure. Go big or go home, right? Let's shave off her beard and eyebrows, poor thing. She looks so ratty.

"You may be right. It will be much easier as far as Lulu is concerned."

So. Here's the poor little mutt-mutt actually wearing a sweater yesterday. In the middle of the summer. Because she thought she was cold without all her fur.


Hang in there Lulu. I know how you feel after an extreme haircut, but believe me. It will grow back. Mine did.

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.

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