I Hope I Keep Grinning....

image found here 

When events happen as they are promised and planned, I am a very happy person, which is probably why I'm sitting here at my laptop grinning ear from ear. Just like the Cheshire cat. (Hm...methinks that there is more similarities shared between the CC and me besides the grin....like whiskers and the belly....)

The infusion staff told me six months ago, "This one is the worst. It's so much easier the next go-around." Whaddya know? They were right. As I recall, on my first cycle of rituximab, the whole week immediately following was just a blur of fatigue, a strange metallic taste in my mouth, and the feeling that I was wearing a lead suit.

This time? Not so bad. As promised. Yes, I did sleep away the day of the infusion and mostly the day afterwards, but this morning awoke and tentatively stuck my toe out of bed. I stood up. I walked around. I went to the bathroom. I changed my clothes and brushed my teeth. I.......did all those things without breaking a sweat.

This is a very good thing! Yes, I still can detect the mouse fatigue that I experienced earlier, but it seems to be a bit more manageable this time. So far.

Grin inducing incident number TWO: Somewhere in the flurry of wedding stuff and vacation plans, John found time to hire someone to paint our house. Which really was needing to be painted, since we haven't repainted in sixteen years. SIXTEEN years. Oh, John has repainted the trim repeatedly etc etc., but to actually repaint everything? Not since the house was constructed. And actually, there's a reason that the buttery yellow paint on our house should remain relatively unfazed by time and weather: it had four coats of paint put on it initially. The compound used to seal the joints where one plank of siding met another was faulty in that the paint would bubble up over it's surface. So the compound was repeatedly dug out, reapplied, and then the house completely repainted so that the overall effect would be consistent. Seemed like the fourth compound worked like a charm...

So when our Mr. Painter Man showed up on time, equipment ready, in beautiful painting perfect weather and got right to work on the house as promised and planned, John and I both were happily grinning. He's nearly done and it looks beautiful.

I'm also grinning because I noticed that my toilets needed scrubbing.

This is not as crazy of a statement as it may appear. I've written before that one of the signs that a flare is approaching it's end is when I am able to look around the house and notice things like dust, or cobwebs, or clutter, or........gross toilets. I think the last time I commented on this phenomenon went something like this after I was recovering from pneumonia:

Call me weird, which of course I am, but it appears to me that my attitude towards the cleanliness of my house is inversely proportional to my overall feeling of well-being. Or to put it another way, the worse I feel, the better the house looks. And vice versa.

For example: Post-pneumonia Julia looking in bathroom - AAAAAAACCCCKKK! Where's the toilet brush?? And the bleach?? And the Windex?? And my extra-thick rubber gloves??

Pneumonia Julia looking in bathroom - Oh, good. We have a toilet. *cough* *hack* *wheeze*.

Like that. So I quickly swished out the toilets and, yes, grinned.

Ahhh. John is smoking a ham, we've got sweet potatoes in the oven, and friends are stopping by for dinner. It's all good.

H.R. 6218 Legislative Update

You can buy your very own Uncle Sam here. 

Heidi recently posted this comment on Reasonably Well:

Best of luck! Wish I had some Ritux!! FYI - I went to see our rep today with the new autoimmune bill...the appt was screwed up coz they did not put me on the calendar - but they talked to me anyway. My discussion did not go as well I guess - they told me that they did not see this bill passing this year, and long term looked redundant with the NIH restructure act...I put in a good plea anyway!

Good work, Heidi! Thanks for taking the time and making the effort to ensure that our voices are heard!

I had an interesting dialogue just the other day with my congresswoman's District Director Mr. Ryan Hart regarding H.R 6218. You can read this to learn more about this very worthy piece of legislation. I had the opportunity to meet with him back in August, and he was very well-educated on this bill already since my congresswoman became a co-sponsor of H.R. 6218. In addition, Mr. Hart shared with me that he had members of his family dealing with autoimmune disease and had personal knowledge of the huge impact that it can make in someone's life.

So Mr. Hart called to tell me personally the news of this bill's future which was similar to what Heidi was told: that the likelihood of it coming to a vote was unlikely with the short remaining length of this year's session. But he was quick to add that the Congresswoman had plans to reintroduce it again early in the next legislative session and that in his opinion, even though the NIH restructuring may take place, he felt that since 6218 had such strong bipartisan support it still was a viable bill. He put me in contact with my Congresswoman's staff in D.C. that has oversight on all upcoming health care related legislation.

I sincerely hope that his prediction is correct. I'll be watching. We ALL will, right?

Well, Now....

......these things came out pretty well. And so easy, thanks to D#1's help.

Resting up. Semi-conscious. Y'all know the drill. See you tomorrow.

No Time Like The Present....

So I saw Dr. Young Guy yesterday, and after I handed him a very cuuuuuttttteeeee candy box decorated with ghosties and filled with all different flavors of candy corns, he asked me how I was feeling these days.

I told him that the wheels have come completely off this wagon. The beautiful chariot was now a mushy rotten pumpkin. My gown was in tatters.

He lifted one eyebrow. "That bad, eh?"

Yup. That bad. I told him that I held things together through the wedding but it didn't take long for things to fall apart afterwards.

"Time for more rituximab?"

Bring on the mice. I'm beyond ready!

So after a physical exam and bloodwork drawn, I have an appointment at my friendly local infusion center, which is where I will be WHEN Y'ALL ARE READING THIS!

Is that cool, or what?

My friend Susan wanted to know what made me so special that they could fit me into their schedule only one day after my rheumy appt.

Must be that they know I bring mousie treats, I told her. Here's this round's version: Chocolate mice on a stick. Brilliant! It's a good thing that I can whip these things out pretty quickly and that I had everything that I needed already.

Think good mousie thoughts for me. Now where did I put my lucky shoes........?

They Don't Make 'Em Any Better Than This.....

There we all are: Terese, Greg, John, and me. We're standing in front of a gorgeous sunlit ocean and lighthouse. See it?  

While I'm horizontal for extended periods of time, like over the last few days, my mind tends to wander because......well, there's only so much that you can do while lying around. But I shall persevere with the slug imitation for the rest of the week interspersed with gradually increased activity, since I do really want to get back on my feet.

So. My mind has been wandering in a few particular directions, and I thought I'd inflict share my musings with y'all.

First of all, I'm so thankful and amazed that this summer/fall wedding marathon went so well. It still seems a bit surreal, but there it is: two of our children are now married to two fabulous people, into two fabulous families, and the wedding festivities were fabulous as well. Seriously. Two amazingly joyful celebrations.

Wow. Wowsers. Am I a lucky woman, or what??

Secondly, I am humbled by the efforts that our friends and families have been willing to make in order to make these two events so special. To plan, to travel, to offer suggestions, to listen patiently, to.......well, to do anything that we asked. Amazing.

And now, after the hooplah is over and the dust has settled, our family has expanded exponentially, which is a marvelous thing. Ahhhh.

And third: Although everyone was supportive and helpful, and I'm so grateful to everyone that was willing to take the time and expense to travel coast to coast for these events, I've realized yet again that a couple of folks in particular are such a blessing to us. I tease them relentlessly, but in all seriousness, Greg and Terese and their family are indescribably dear to John and I and our kids.

It's such a rare thing to have a friendship that lasts these many years and endures so many events, and as I'm lying here studying the inside of my eyelids, I'm thanking my lucky stars for these two exceptional people. When I think back over the summer, so many things come to mind: Like the fact that Greg bought a HD video camera so that he could record the weddings, then actually recording all the fun, and manicuring his lawn to perfection for a wedding shower, and playing taxi for endless hours shuttling people to and from airports; Like Terese spending hours and hours tying ribbons and writing name tags, and lugging boxes, and helping me be realistic about my activity levels, and being very patient with me when my fatigue limited what she and Greg and John could do, and, well. I can't begin to list everything here.

But the most amazing thing of all is this: That after spending all this time together, and traveling from one side of the country to another, and then taking yet another whole week to vacation together.........that we still like each other.

(Well, at least John and I still like THEM. A lot. They're still speaking to us, so I'm guessing we're good. Hehe.)

Even as we were pulling into our driveway on our return from the last leg of our flight back from New England, we were discussing our next trip together.

I'd say that's pretty darned cool, and I'm very, very thankful.

Let's Review, Shall We?

Yeah. NICE layer of dust on the entertainment center after being away for two weeks. Ask me if I care.....pffffft. 

As I'm in the midst of recharging my energy batteries, I'm reminded of the frustration and difficulties that most sjoggies deal with when trying to address their problems with fatigue.

(And dumb stupid fatigue stinks. Just my humble opinion. For whatever it's worth....)

So I thought that it may be a good time to review this excellent Sjogren's Syndrome Foundation fact sheet regarding fatigue:

Patient Education Sheet:

 Fatigue Fighters in Sjögren’s Syndrome

The SSF thanks Frederick Vivino, MD, FACR, University of Pennsylvania, Penn Rheumatology Associates & Sjögren’s Syndrome Center, Philadelphia, for authoring this Patient Education Sheet.

Fatigue is one of the most prevalent and disabling symptoms of Sjögren’s syndrome. Here are some tips that can help you cope with the problem:

• Work with your doctor to find a specific cause and treatment for your fatigue. The possibilities may include systemic inflammation, poor sleep, fibromyalgia, depression, hypothyroidism, muscle inflammation or side-effects of medications.
• Know your limits and pace yourself. Plan to do no more than one activity on your bad days. Try to do more on your good days, but don’t overdo it!
• Listen to your body and plan to take a 20-minute time-out every few hours to help you get through your day.
• Educate your friends and family about what you are going through and how the fatigue in Sjögren’s syndrome can come and go.
• Develop a support system to help you with tasks. Ask friends and family members to be prepared to do one or two chores for you on your fatigue days. Give them specific instructions in advance and be reasonable with your expectations.
• Get at least eight hours of sleep every night. If you wake up at night, plan extra time for sleep.
• Get your body moving every day! This may help not only your fatigue but also your chronic pain, poor sleep and depression. Start with five minutes of aerobic exercise daily (e.g. walking, biking, running, elliptical, treadmill) and increase the duration by an additional two-to-three minutes each month up to a maximum of 25 minutes daily. If you have a heart or lung condition, consult your doctor first.
• If you are still employed, ask your employer for accommodations because you have a medical condition. Try to work from home if possible to gain more flexibility with your work routine. Check the following resources (search “chronic fatigue”) to get more information on work accommodations and/or career options: Disability and Business Technical Assistance Center atwww.dbtac.vcu.edu and Job Accommodation Network at www.jan.wvu.edu.

• Identify the major stressors in your life and work with a mental health professional or your support system to minimize their impact.

For more information on Sjögren’s syndrome, visit the SSF Web site at www.sjogrens.org, call 800-475-6473, e-mail ssf@sjogrens.org or write to the Sjögren’s Syndrome Foundation, 6707 Democracy Blvd, Suite 325, Bethesda, MD 20817.
Clinicians: Please make multiple copies of this Patient Education Sheet and distribute to your patients. If you have an idea for a topic or want to author a Patient Education Sheet, contact us at sq@sjogrens.org.

You can also read it here. I'm going back to bed. Nighty-night.

My Brain is Not Awake

Sleep is a very, very good thing. See y'all tomorrow.
Zzzzzzzz.....

It's Not a Fairy Tale Anymore

image found here. 

Ahhh. Back home.

Beautiful, wonderful, absolutely perfect wedding.

Lovely weather, amazing scenery, great travel companions.

BUT.

After it's all said and done, I'm tired. Really, really, tired. And I've had a few more migraines, which occasionally put a damper on our after-the-wedding tour around MA and ME.

When I see Dr. Young Guy this week, when he asks me how I'm feeling, I am going to tell him that I feel like Cinderella when her coach turned into a pumpkin and her ball gown morphed back into her ash-covered work clothes.

I want to hop back into my magic carriage, decked out in finery and, more importantly, feeling fine. I'm suspecting that in order to do that, I'll need more than a fairy godmother -- I'll probably need another visit to my infusion team for another round of rituximab.

Can't get there soon enough.

Buh Bye, Atlantic Ocean

I'm on a plane heading home.

Here's pictures of a few of the last days' events:

The Wilds of Maine

.::hushed tones of the highly esteemed animals-in-the-wild television show announcer::.".....and so, on our quest for the elusive and rare Appendegageous Tereseonius, we anticipate great difficulty in catching a glimpse of this most sought after creature which is suspected to frequent gazebos."

"You may recall that these crafty organisms have been photographed rarely. This most recent image is unusual in that the Appendegageous Tereseonius was seen in a site other than it's beloved gazebo."

"The following image is controversial in that the authenticity of it's origin has been questioned. The image is grainy, so examine it closely.You be the judge."

"Today, we can only wait, watch, and hope.....oh my.........what's that?..::excited whisper::....can it possibly be........"

"My stars and garters! It IS! It really is a true Appendegageous Tereseonius in the wild!"

"What a sighting! I. Have. NEVER. SEEN. THE. Appendegageous Tereseonius at this close proximity!!!

.::GASP!::.

"Viewers, I can hardly believe our good fortune. This experience has exceeded my highest expectations because it now appears that we have not one but TWO Appendegageous in our sight! I may need a moment to compose myself here, folks...."

.::mops heavy perspiration from brow::.

"Well, now. Some experts in this highly specialized field have theorized that occasionally the Appendegageous Tereseonius will socialize with other species within this genus but until this moment, this has not been documented. I'm not qualified to make this identification, but I suspect that the additional Appendegageous  is a member of the Marysonious species. Let's see if we can get closer to these two exceptional creatures without causing them to take flight...

"Today's success is simply too much to assimilate for this humble reporter, viewers. My goodness.....I......I......"

.::thud::.

.::offscreen voice::. "Hey. I think he's passed out.....aww geez....lost another one to this wild animal....cue the commercial, Larry!"

We Have Moved on From Quaint....

.....to spectacular.

We thought we had met our quota for spectacular -- ness, but then we met Lenny, the world's only life-sized chocolate moose.

Spectacular. Amazing. Awesome. Inspiring.

What could tomorrow possibly bring that would be better than a life-sized chocolate MOOSE?

What I've Made Everyone Do All Week

See? There we all are: John, me, Mary, Greg, and Terese. You can guess which of us is which. 

Image found on Cute Overload. 

So, I've been bullying asking folks in the nicest possible manner to pose for pictures.

AND. 

As usual, there's one person that usually refuses to cooperate. Who shall remain un-named. But here's a hint: The first initial of her name is TER and the last ESE. 

Letters

I've received several letters over the past week or so, and even though I haven't had a chance to return them, please know that I haven't forgotten y'all!

I promise to get busy writing return emails as soon as I'm home and rested.

Daily Posting....

......is difficult when access to the internet is also difficult. See y'all tomorrow.

And the Adventure Continues

With the wedding behind us and the happy couple off honeymooning, John and I and Terese and Greg and Mary set off for a week of relaxation in New England. 

What fun.

But......

How much QUAINT-ness can one part of the United States hold, hm? It's everywhere I look around here. 

My goodness. 

Blessings

Tomorrow is the Day!

Guys. Such a flurry of wedding fun. Pictures to follow on Sunday.

Think clear skies, blissful bride and groom, delightful guests, and happy family thoughts for us.

More....

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