Tuesday, March 3, 2015

Totally Worth It

I'm so glad that I took Canon with me on Sunday. While resting up, I get to look at pictures of the reasons why I'm totally wiped out.

Ah, but nothing that a few days of rest can't fix.

See y'all tomorrow.






Monday, March 2, 2015

I Wonder if My Legs Will Work Tomorrow......


What a beautiful day Sunday was. We decided to take a drive, and as we made our way East along the Columbia river, John casually suggested that we stop somewhere along the way and take a short hike.

My goodness. We chose a whopper of a place to walk. Take a look:


 Unbelievably, yes. I hiked high enough to take these pictures myself.


Even though I went farther than I thought possible, I didn't make it to the top. Ah, well. Perhaps next time.


Going down was much easier than hiking up.


 I love this place.

Sunday, March 1, 2015

And The Winner Is.......

Yesterday, I heard Lulu making a ruckus. She was barking and yapping at the front door so I peeked out to see Terese and Greg trying to make a stealth delivery on my front porch. Of this:


When I realized what it was, I was astounded. Shocked. Amazed. Dumbfounded.

Yes. It was indeed a three foot tall Friendship Extraordinaire trophy. I was overcome with emotion as I took in it's....it's...um....uniqueness.

[You can read how I earned this coveted award here.]


.::sniff sniff::. It was such an honor be nominated. (although I did nominate myself) But to actually win! I never in my wildest dreams though I'd be standing on my front porch accepting this two-plastic funnels superglued to a piece of wood-and-spray-painted precious trophy embellished with the words, "Friendship Extraordinaire Award" on the front.

The laminated paper stapled to the wood exquisite plaque on the back reads,


"May The Eternal Flame of Friendship Shine Forever"! 

Golly. Oh, my. 

For a nanosecond, I had no words. Terese's thoughtfulness would have brought a tear to my eye if I could still make tears. When I found my voice, I attempted to make an acceptance speech which began,"I'd like to thank all the little people out there that made this possible..." but I didn't get to finish because the award presenters began looking for things to throw at me. 

Is THAT any way to treat the Friendship Extraordinaire recipient, I ask you? By her FRIENDS? Hm?! 

Note the battery operated self stick LED eternal flame:


The eternal flame is especially impressive when the trophy sits in it's three foot box. See it eternally flaming?


I've put it in a place of honor so that everyone can appreciate it's eternal flame-iness. Or would that be more accurately flame-esence? 


Lulu doesn't know what to make of it. But I think it's a thing of beauty. Wonder if I should ask John to make a trophy case for me...

Saturday, February 28, 2015

Here's Your Gold Watch: If You Consulted My Rheumatologist

Here's an interesting post from blogger Annette who authors Here's Your Gold Watch - Rheutired entitled "If You Consulted My Rheumatologist This Is What Might Happen":

This is a description of what occurs during a typical visit to my rheumatologist, in case anyone wants to compare. At the initial visits there was more detail than described here, but after years of seeing him there's a comfortable pattern.


Company while I wait for the doctor

Continue reading here

What's a routine visit to your rheumatologist like? 

Friday, February 27, 2015

Group Therapy


Ten years ago, shortly after my diagnosis, I asked my doctor about support groups in the area. She referred me to a chronic illness group which included people with a variety of diagnosis. I attended just one of those meetings, but it just didn't feel like a good fit for my needs at the time. So I looked for online sources specific to Sjogren's syndrome and have definitely found them. Big time. But I've received several email in the past asking about Sjogren's support groups, and have had no personal experiences with them but was only able to point the authors of the emails to the Sjogren's Syndrome Foundation website, and decided it was high time for me to find a local group and see what they had to offer.

It was a fairly small group, about ten of us. The format of the meeting was simple: everyone took their turn in sharing events in their lives over the previous month. We sipped coffee and tea, laughed, listened, and talked. When it was my turn, I have to confess that I talked probably longer than I should have. I'm grateful to the members as they listened patiently. As I talked, I realized what a different thing it was to have face to face interaction with other patients.

I have this wonderful virtual soapbox here on Reasonably Well to write in detail every little thing in my life that I choose to share, and I do it every single day; so one would think that I would have been content to just simply listen. Which, of course didn't happen partly because I'm a blabbermouth. But sharing my experience with Sjogren's syndrome here on my blog is very different in that it's told from my own personal perspective while sitting alone with my laptop on my knees. When I sat down at the table in a church fellowship hall with a group of people who also have Sjogren's, I felt as though I was rediscovering my disease anew. I could see it in these women's faces, in their eyes, and hear it in their voices. I wanted to tell everyone about my story and I wanted to hear theirs, too.

The session lasted an hour and a half but seemed to take about fifteen minutes as time flew by. Before I knew it, we were cleaning up the coffee cups and pushing tables back into place. The group meets monthly, and I hope to attend the next meeting if my energy limits will allow.

If you live in the Portland area and would like more information about this support group, drop me an email. I'd be happy to share the location and time of the meetings. You can also visit the Sjogren's Syndrome Foundation webpage to find information regarding this and other support groups in the United States, Canada, and internationally.

Thursday, February 26, 2015

It's So Hard to Be Humble...But I'm Trying

I didn't promise that I wouldn't take a picture of THIS. 

I just want to state for the record what a really exceptional friend I am. 

Hey. Quit laughing. All of you. I mean it. 

So here's two - count 'em - TWO examples of my friendship that go above and beyond the definition of "exceptional friend" - ness. Want to hear all about them? Of course you do. I'll tell y'all everything if you'll just quit guffawing. 

EXAMPLE NUMBER ONE

A couple weeks ago, John and I and Greg and Terese went out to dinner. We had an adult beverage or two and a tasty meal, during which I had fun sketching on the paper tablecloth with the crayons provided by the restaurant. Terese surveyed my work and everyone made creative suggestions. I enjoyed the picture of Terese that I had drawn so much that I took a cell phone picture of it. We all laughed, and then we all headed home. Boom. Evening over. 

So several days later, I uploaded the pictures from my phone onto my computer and was struck yet again by the results of my artistic efforts. Which prompted this word for word conversation with a different friend via Gmail chat, copied and pasted here:

Me: Hey there. I need your honest opinion.
Jenny: OK
Me: So I’m sending you a portrait of Terese. I drew it on a paper tablecloth last night. Should she be offended? She thought it was brilliant last night but then she had had a lemon drop martini. It’s my interpretation of her as a ballerina.
[pause while email sent, received, and reviewed]
Jenny: Umm….I don’t know. On one hand you depicted her as very…hardy? hale? full of vigor? Did she re-state her opinion today?
Me: See, that’s where you come in. Does she really need to re-view this priceless piece of art?
Jenny: What are you considering doing with said masterpiece?
Me: I’m not sure. I have this feeling that it’s too valuable to languish in my photos folder. I thought it captured her vibrancy. Pink hair and all. Also her inherent goodness, seeing as she’s walking on water in the picture. Notice that’s she’s holding a sweet potato fry and a crayon. That’s profound. Also, I consider this a multi media piece since I incorporated a grease spot by transforming it into a chicken leg. 
Jenny: Ah. That explains it. I was wondering why she was sprouting poultry parts. 
Me: Work with me here, girl.
Jenny: You did emphasize the thighs you gave her.
Me: Yes…..yes… I did.
Jenny: You may want to give her another chance to review before a public showing.
Me: Um.....I can agree with that.....I guess. 

What, you ask, is so extraordinary about this exchange? What proves my superior friendship skills?

Guys. I didn't post the picture. I could have put an example of one of my masterful portraitures here on Reasonably Well for everyone across the ENTIRE PLANET to see but I didn't.

No, I didn't. I, being the judicial person that I am, decided that in the unlikely event that Terese should not appreciate the ah....um.....uniqueness of her portrait, I would keep it tucked away. Unappreciated. Without even putting her in the position of insinuating that her friend Julia's artistic abilities stink.

Impressed yet? No? Well. Here's

EXAMPLE NUMBER TWO

A few days ago, Terese asked me to drive her to and from a lengthy dental appointment. She needed me to drive her since she was instructed to take a medication before we left to relax and partially sedate her. I, of course, agreed readily thinking that given the type of drug and dosage prescribed, that this could provide an experience with the potential to be incredibly entertaining.

Here's where my good-buddy halo began to glow above my brow: when Terese came ripping down the church choir loft's steps after Mass Sunday and made me promise not to take any pictures or video of her reaction to the drug, I actually said yes.

Yes, I did. Well, I did try to cross my fingers behind my back but she saw me. Drat.

Can you believe my super-duper friendship skills? Having seen this woman under the effect of one third of an adult beverage (a rather potent one labeled as a Disgruntled Elf at Christmas time, but that's a whole other story) I was already mentally rubbing my hands in glee at the opportunity to witness something spectacular. But no. Being the noble individual that I am, promised while standing in the narthex of our church, that I would not get photographic or audio visual evidence of her under the effects. And in doing so, deprived myself of a photographers dream shoot.

What an unselfish person, right? Am I right?

When I picked her up at her house, she had already taken the first dose of her happy pills, and handed me the printed sheet pictured above. I laughed as she carefully placed the sheet in my hands. Woo hoo! I thought as I read. Even though I can't get out my camera, it looks like we're in for a real corker of an afternoon! I was grinning in happy anticipation as I poured her into the car and we headed for the dentist.

Well. What a shame that Terese turned out to be disgustingly boring while medicated. Not one goofy comment. No giggling. No drooling or snoring. Just slow and tired. How disappointing.

After the procedure, I delivered her back home and tucked her into her recliner and waited hopefully thinking that maybe....just maybe there could be at least a few late-appearing drug induced incidents to be seen. Instead she sipped her Starbucks caramel macchiato without dribbling one drop and informed me that she was ready to doze off for awhile.

Pffft. That was absolutely no fun. No fun AT ALL. What nerve.

Sigh. Even though cheated royally out of real entertainment, I carried on as best I could. But then we exceptional friends are patient like that. And we exceptional friends are humble and modest too.

Oh, yes. Definitely humble. Most certainly modest.

Terese? Don't forget to spell my name correctly when you have my "Friendship Extraordinaire" trophy engraved. Oh, and it doesn't have to be really huge or anything. Yeah. The three footer should be just fine.

Wednesday, February 25, 2015

Sjogren's Syndrome Foundation Patient Education Sheet: Health Insurance Tips - Part 2

The Sjogren's Syndrome Foundation's publication Sjogren's Quarterly Winter 2015 edition contains the newest SSF Patient Education Sheet:


Patient Education Sheet
______________________________
Health Insurance Tips – Part 2 
How to Draft an Insurance Appeal Letter 

The Patient Education Sheet, Health Insurance Tips – Part 1, contains tips on obtaining healthcare reimbursement. Part 2 addresses how to appeal a decision if you are denied coverage. Always appeal a denial! Be persistent and do not give up when first denied.

Information and documentation that will help you appeal a denial

  • Your policy and claim numbers, employer name if your policy is through an employer, and the full name of the insured
  • The therapy or procedure for which you were denied and why the denial letter stated you were denied
  • Medical records that back up your diagnosis and medical problem that relates to the therapy in question
  • A cost-benefit analysis when relevant - For example, you can compare the cost savings of obtaining punctal plugs or cauterization compared to the higher cost of having to pay for more moisture drops and ointment over a long period of time.

Letter of Medical Necessity

  • This letter is usually written by the physician explaining why a therapy or other treatment is medi- cally necessary.
  • If the Letter of Medical Necessity is not signed by your physician, have your physician provide a let- ter of support for your appeal and reason for recommending or prescribing your therapy.
  • A Sample Letter of Medical Necessity for dental treatment can be found on the SSF website under “Brochures and Resource Sheets.”

Quotes from your health insurance policy that are helpful to your case

  • For example, if your policy states that coverage is provided for a closely-related disease and/or similar symptom, quote that back to the insurance company. If the company cites a reason for covering the related disease or symptoms, such as an inflammatory response, use that. Quoting such statements and providing documentation about similar occurrences in Sjögren’s increases your chance for the success of an appeal.
  • Cite two or more articles from respected medical journals backing your claim of medical necessity.

Refer to the SSF website as an authoritative source of medical information on Sjögren’s. 


For more information on Sjogren's, contact the Sjogren's Syndrome Foundation at:
6707 Democracy Blvd, Suite 325, Bethesda MD, 20817  
800-475-6473  www.sjogrens.org  ssf@sjogrens.org

Clinicians: Please make multiple copies of this Patient Education Sheet and distribute to your patients. 

Tuesday, February 24, 2015

Vivre avec le syndrome de Sjogren: #Hospitalglam

Is this beautiful feline used in your blog header your kitty, Jazzcat?

Jazzcat, authoress  of Vivre avec le syndrome de Sjogren - A Sjogren Life, has brought an interesting confidence-boosting project to her readers' attention: the Tumblr account #Hospitalglam. The talented Jazzcat publishes her blog in both French and English.
I would like to speak about the #hospitalglam hashtag on Twitter and Instagram lately. 
It's Karolyn Gehrig who start it, a young women, with an autoimmune disease. She started to take pictures of herself when she had hospital appointments, with the #hospitalglam tag. 
The idea is to create an arstitic time in the hospital, to help feel less afraid, to fight back in a certain way. 
She has a Tumblr, where she post her picture and also those from other people who don't have an account. And she invit everyone to use this tag. 
You can find her on twitter, and instagram
Jazzcat has offered to post readers' pictures who do not have a twitter or instagram account:
What I like about this is that know I'm less frightened about my next appointment, I'm going to hospital 3 or 4 time a year, and I hate that. But this time, for my next visit, a little part of me is thinking "how can a take a picture?", it helps me think about something else. (and come people ask professional in the hospital to help them for th epicture, I found that really fun). 
So, discover this movement, and if some people here don't have twitter/instagram account, send picture, I will post them here, and off course I will share mine.
To share your glamorous selfie with Jazzcat and the #hospitalglam, you can leave a comment on her blog located here. Great project.

Monday, February 23, 2015

Spring Haircuts

Ahh. Spring. The time of new growth, the occasional blue skies, and the sound of John's chainsaw on a stick. As he begins his annual whacking with abandon judicious pruning of vegetation in our back yard.


I have to confess that although I have great fun in teasing him, specifically about the infamous 2009 incident in which he and Greg took a full-size chainsaw to my hydrangea, (Wow. Has it really been that long ago?) this year I actually asked for him to give said hydrangea a major haircut.  He wasted no time and seemed to relish chopping the thing down to below knee level.




It really did need it. I pulled out a zillion completely dead canes even after he trimmed it. Actually I think the last time it was throughly pruned was in the aforementioned event. Of which both John and Greg continually remind me because after that chainsaw massacre pruning, the thing did put out spectacular foliage. They insist that I have never exhibited acceptable levels of gratitude for their horticultural skills.

Pffft.

But I'm prepared for the John and Greg backlash after I humbly asked for a repeat bush haircut. It's worth swallowing my pride, I think, to enjoy the beautiful blooms that will follow.  Yes guys, I'm thankful. But grateful enough to apologize for my over-the-top response in 2009?

Never.

Sunday, February 22, 2015

Meh.

I think that Skippy aka Asta should have won an Oscar. Now there's a real star. 

Are you planning on watching the Oscars tonight?

I'm not.

I have to confess that I haven't seen any of the movies nominated for Best Picture; and to be honest I don't plan to see them. This year's list just doesn't interest me. I'm not familiar with this year's host, Neil Patrick Harris either. Besides, who needs to willingly put themselves in a situation to endure an excruciating four hours of film stars' self-aggrandizement when you can read these articles (found here and here) that tell us beforehand just exactly what is to transpire?

Which is not to say that I don't love movies - I do. A good film completely engages me. It takes me to places that I've never been and encourages me to consider new ideas and concepts. A really good movie provides a welcome escape from my everyday problems; and occasionally puts my concerns into perspective when other larger, more encompassing world issues are portrayed. But most importantly - I love the popcorn. What IS it about movie theater popcorn? I find it completely irresistible even though it's insanely expensive:
.....concessions also carry a high mark up. For example, he said, the amount of popcorn it takes to fill a large bag can cost 8 cents to make. Bags by themselves can cost theaters 22 cents to 35 cents per bag, and a tub can range in cost from 85 cents to $1.
A theater may sell a large tub of popcorn for $8, Bucksbaum said. So if a tub-size container cost the theater, say, 92 cents, combined with the 8 cents for the kernels, that tub of popcorn could carry a 700 percent mark-up. Continue reading here
If I'm going to fork out big bucks for a movie and popcorn (because if I'm at a movie there is without question popcorn involved) the flick better be exceptional.


I think I'll pop in a DVD of one of The Thin Man mysteries instead. Go get 'em Nick, Nora, and Asta.  Gee. They just don't make 'em like they used to..

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