After the Prednisone

So.

I've been hopped up on lots of prednisone recently in my doctor's effort to get my lungs to behave themselves. But I've tapered back to my pre-asthma dose over the last several days, and I have to admit that I kind of miss the yippee skippee kind of feeling that 50 mg/day of prednisone can induce.

And now it's gone.

I feel this strange kind of slow-motion thing which is different from being fatigued or brain fogged. I don't feel exceptionally tired. I'm really glad that overall I breathe better. I am relieved that carbs and sugar just don't taste as incredibly addictive now that I'm not taking as much prednisone. You'd think that with all those positive experiences going on that I'd be happy as a clam. But I feel kind of subdued, and anyone who knows me also knows that subdued is not a normal state of being for Julia.

Instead, I feel kind of deflated. I feel like I did when I was a little kid on the day after Christmas.....I loved all the hoo-rah and didn't want it to end.

I'm not complaining, really I'm not. Sometimes the whole steady-as-she-goes feeling is not a bad thing. It beats the heck out of the dang-I-just-can't-get-enough-air feeling.

But steady-as-she-goes is not the same as hip-hip-hooray-I-am-breathing-perfectly-normally, either. As my prednisone dose has decreased, some of that wheezy cough has crept back, just nasty enough to make me remember what a full fledged asthma attack felt like. A reminder that no, it's not all better, or all gone. Rats.

Hm. Maybe the damper on my spirits isn't really due to a decrease in prednisone. Maybe it's this reminder with every cough that Sjogren's syndrome is a progressive disease.

A progressive disease.

Hm.

I wouldn't call this progress.

A tisket a tasket......

.........Julia has a basket. I felt quite Martha Stewart-ish as I grabbed my wicker basket and strolled around our back yard today. John has worked really hard over the past few years to incorporate fruit trees and berries into our landscaping, and we are just beginning to enjoy the results.

Here's a few peaches:

And one little apple:

And a few tomatoes:

I had a handful of blueberries and a couple of strawberries in my basket but they didn't survive the walk into the house.

Yum.

Dunk These Cookies

I was talking to my mom yesterday, who remarked that she had just finished making a batch of cookies.

Do you remember when people had cookie jars? And actually put home-baked cookies into them? I remember Mom's. As a kid, I never considered that simple lidded ceramic jar anyone else's but Mom's. She filled it, and she metered out it's contents. Mom rarely denied anyone access to the cookie jar, but we all had sense enough to realize that if you were stupid enough to stick your hand in there without asking, then you didn't deserve a cookie.

After our conversation, I was feeling nostalgic - for the days of Mom's cookie jar, but also for the times when a filled cookie jar was always on my kitchen counter and my kids too had enough sense to ask for a cookie instead of pilfering one.

Man. I miss those days. It is so strange to find myself without a cookie jar and kids running in and out of the house constantly. Guess I'm still struggling with the whole empty nest syndrome as well as Sjogren's syndrome.

Nostalgia coupled with a sweet tooth swept me into my kitchen within minutes. Soon I was thumbing through my recipe box for Mom's cookie recipes - the gold standard against which all cookies are measured. I couldn't choose just one, so ended up making three: peanut butter cookies, chocolate chip cookies, and Grandma Ella's ginger snap cookies.

I had volunteered to bring a dessert to an upcoming party, so I figured I'd be able to bake to my heart's content and then give them all away.

OK. Not all of them. I'll admit that I had to sample several. Quality control, don'tcha know.

There's oodles of great peanut butter and chocolate chip cookie recipes out there, but not as many really good ginger snap recipes. I'll share. 

Grandma Ella's Ginger Snaps

375 degrees

10 minutes

1 C sugar

1/3 C butter

1/3 C shortening

1 egg

1/4 C dark blackstrap molasses

1/2 tsp ginger

1/2 tsp ground cloves

1 tsp cinnamon

1/4 tsp salt

2 tsp baking soda

2 tsp real vanilla

2 C flour

Mix sugar, butter and shortening until creamy. Beat in egg. With mixer on low, add molasses, then ginger, cloves, cinnamon, salt, soda, and vanilla. Beat until well combined. Add flour and mix on low just until all flour is incorporated into a fairly stiff dough. 

To shape cookies, scoop out dough the size of a walnut. Roll into a ball and dip into granulated sugar. Place ball of dough on ungreased cookie sheet and flatten slightly. 

Bake at 375 degrees for approximately ten minutes. 

Brew a large pot of coffee. Once cooled, these are the ultimate coffee-dunking cookies. 

Vitamin D and Your Genes

I've written several posts regarding the importance of getting enough vitamin D, but a recent article discussing the results of a new study warrant bringing up the D topic yet again.

This from Medical News Today:

In a report published online in Genome Research, scientists have mapped the molecular interactions of the vitamin D receptor genome-wide, finding novel connections of vitamin D with genes related to autoimmune disease and cancer....

...Employing a technique called ChIP-seq, Dr. Sreeram Ramagopalan, of the Wellcome Trust Centre for Human Genetics at Oxford University, and colleagues isolated fragments of genomic DNA bound to the VDR before and after treatment of cells with calcitriol, the active form of vitamin D, and then sequenced the DNA fragments. By mapping the sequences back to the genome, they identified more than 2,700 sites of VDR binding, a number that Ramagopalan noted "shows just how important vitamin D is to humans, and the wide variety of biological pathways that vitamin D plays a role in."

What an interesting concept - that inadequate vitamin D can actually affect your genetic material. 

I wonder how much vitamin D I absorbed while hanging my right arm out of the car window as John and I meandered around the coast over the past few days....

You can read more about vitamin D in a National Institutes of Health fact sheet here, and on Doc Gurley's blog here and here. 

Coastal

John and I spent the past few days cruising around Washington State's coastline.

We took as many backroads as we could, which took forever but was wonderful. Here's a few pics. Going to wash the sand out of every item of clothing that we brought with us. See you tomorrow.

Retrovirus Link to Chronic Fatigue Syndrome

Image by Velica

For those dealing with chronic fatigue syndrome, or myalgic encephalitis, among the enormous frustrations in dealing with this illness lies the perpetually unanswered question: What causes this disease?

A question that all Sjoggies have asked as well.

Apparently, last Monday, CFS patients may have a potential answer, according to the results of a study by NIH/Harvard and collaborating evidence published by the Proceedings of the National Academy of Science.

The possible culprit? A retrovirus. You can read more on CFS Central:

by Mindy Kitei

The just-released study detects variants of the retrovirus XMRV in most CFS patients. In addition, nearly 7 percent of the healthy U.S. controls—all of whom are blood donors—test positive, signaling the contamination of the U.S. blood supply.

I was especially intrigued when I read this paragraph:

Alter said he’ll look at other cohorts of CFS patients as well as patients with other diseases, including hepatitis C, HIV, fibromyalgia and autoimmune diseases to see if they harbor these MLVs. He’ll also be examining larger populations of blood donors to determine if the MLVs are transmitted by blood.

Could a retrovirus be causing autoimmune diseases? 

We Love The Fruit Loop

Maggie and Lulu hopped in the car with us yesterday as we headed out on a sunny day adventure.

Ready for another Beautiful Pacific Northwest travelogue? Sorry. I just can't help myself. As a transplant here, I hope that I never take this gorgeous scenery for granted.

Today, we took the Fruit Loop - or a drive through the large fruit orchards on the East side of Mount Hood. Two thirds of all pears eaten in the United States are produced right here. I think all those baby pears have a great place to grow up.

With Mount Adams in the background, here's a grove of pear trees.

The first of this year's Gravenstein apple crop.

All those yummy apples, pears, and peaches are picked and stored in crates then transported to packing plants.

Peachy.

Heading back home towards Mount Hood.

Just in time to watch the full moon rise.

Ahhh.

Choose Carefully

Image by Greg Joens

Sunday, having finally achieved some bit of control over my newest asthma challenge, John and I decided to take an outing to celebrate. We took a drive through the gently rolling hills in Oregon's beautiful wine country with a casino as our destination.

We had a gift certificate for a couple of free dinners, woo hoo.

As we drove along, we were laughing while remembering my mother-in-law's advice - she always said that one was assured good luck at a casino if you saw a white horse while driving there.

Of course, the route to her local casino took her past a farm that owned a lovely white horse. Maybe even two, if I recall. In a pasture located directly next to the road.

Handy.

So we were discussing our own symbols of good luck as we drove along. John had chosen a soaring hawk. Powerful. Graceful. Aggressive. Excellent choice. I thought it suited him perfectly.

But, as so often happens, my choice - made on a trip with my friend Bev - is just plain strange. Bev and I were on an outing during which I told her about my mother in law's white horse story. Bev laughed and asked what my good luck symbol was. I told her I didn't have one since I rarely had good luck at any casino, with the example of my concussion in a strange turn of events during my last trip to Las Vegas as proof.

"Well," she said. "Girl. That's your problem right there. You need to pick something to bring you good luck!"

At that point in our conversation we were driving along past a buffalo ranch. Of all things. I looked over at the bison and said, "Hey! Isn't the buffalo nickel a coin? How about a buffalo? A big animal that symbolizes money! Big money! How perfect is that?"

I pointed at the nearest buffalo. He was magnificent - absolutely huge and staring at us fearlessly while shaking his massive horned head. "That's the one. That's my guy!" We both agreed that I had made a spectacular choice.

So my very own specially chosen symbol of good fortune decided at that exact point to raise his tail and erm.....well, he made a giant buffalo poop.

We laughed until we cried. Yeeeaaaahhh.

MY lucky mascot is a pooping buffalo.

Of course.

Just........Breathe

Photo mine. 

I am feeling much, much better.

AND I have noticed that my lappy computer has also seemed to resolve it's sticky U problem.

Fortuitous, yes?

It is an amazing thing, to take a deep breath and just........breathe. Without feeling chest tightness and constriction and to feel completely full of air. Wonderful, oxygenated, fresh air. Energizing, life-giving, abundant air.

And not have to cough and wheeze simply because I've taken that deep breath. To simply and effortlessly move air in and out of my body.

I suppose there's a lesson to be learned in this frustrating experience over the last week or so - that I should not take anything for granted. Even those simple daily things which make life good.

Like taking a breath.

Uncle Ohm

Awhile back, John and I visited the Oregon Museum of Science and Industry, or OMSI. Great museum, by the way, if you're ever in the area. On our way out, we stopped at the museum gift store. I love museum gift shops. You never know what kind of unusual stuff you'll find there. This is what I found on that particular trip - an amazing puzzle of famous scientists:

So the reason that I find this puzzle so interesting is that my hubby is related to one of the scientists pictured. How cool is that?

Georg Simon Ohm formulated Ohm's Law, which defines the relationships between (P) power, (E) voltage, (I) current, and (R) resistance. One ohm is the resistance value through which one volt will maintain a current of one ampere. (Yes, I had to look that up. Although I did know that he came up with the theory of electrical resistance.)

Georg is John's um...great great great, well, not sure how many greats, uncle.

I did not know about this famous physicist in the family tree until our pre-teen son began to diagram circuits. For fun. Because he thought it was cool. I found them scrawled on papers and stapled to plywood in John's workshop with coils of wire and more diagrams and materials lists. What WAS this kid up to, I fretted. Nothing to worry about, said John. He's just interested in electricity lately.

I commented to John that our kid's interest in physics and electricity certainly didn't originate from ME. Which is when I learned about Uncle Ohm.

We thought this proclivity was way cool, and tried to encourage him to continue to explore and learn. Until.......

There came a day when I saw him hauling our very expensive stereo receiver upstairs to his bedroom.

Stop it right there, buddy ol' pal. What's going on with our stereo?

"Dad SAID I could!"

SAID you could what?

"He SAID I could fix your receiver up so that I can add a few more speakers."

Really?

"MOM! I promise!"

I dubiously watched him head up the stairs, cords trailing behind him. By now I had come to learn to just vacuum around the piles of cable and wires and connectors and soldering tools and electronics catalogues littering his bedroom.

I heard him bustling around whistling and obviously having a great time. When John came home from work, he confirmed that yes, he did actually give this kid permission to monkey around with the very pricey and complicated innards of our stereo.

We congratulated ourselves for raising such an intelligent son. Then heard a loud "zzzaaap!" and saw the entire house's lights dim. As we raced upstairs I smelled a distinct burning plastics and metal odor. My son stood surrounded by smoke in his room, peering quizzically into the completely melted electronics of the shell of our now-dead receiver.

"Hm," he said. I didn't know whether to strangle him because he had just completely wrecked our stereo - or to grab him in a mommy bear hug because he had avoided electrocuting himself.

"Oh, Mom," he said as he shrugged off my hug and our smoke alarms began to shriek. "I know enough not to zap myself silly." Good thing he also knew enough that he needed to start saving to pay his parents for a new stereo receiver.

Four years later, he began college as a freshman studying electrical engineering, but after the first few semesters, changed his major. I couldn't understand why. He was doing really well, and after all, obviously had the genetics for the profession.

"Mom," he said. "I want to keep this fun. Making it my career takes the fun out of it."

Fun? Wires and circuits?

"Oh, yeah. The best stuff ever."

Kids.

Thank goodness his degree in computer informatics has suited him just fine and has provided him with a great job. And yes, electronics catalogues and cables and wire still litter his apartment along with circuitry designs.

You can buy your very own Famous Scientists puzzle here. 

Chomp Chocolate

Image found here. 

As I've said repeatedly.........there's nothing like chocolate to satisfy a serious prednisone carb craving. Especially in cake and frosting form.

But here's some evidence that chocolate is actually beneficial for other reasons...

I like it:

Excuses for Eating Chocolate Can Now Include Heart-Failure Prevention

August 17, 2010 (Dallas, Texas) — Not that many would need further encouragement to eat chocolate regularly, but a prospective observational study of older women in Sweden suggests that partaking of it up to a few times a week can cut the risk of heart failure by about a third [1]. Although many studies of various kinds have linked intake of chocolate, especially flavanol-rich dark chocolate, to improved blood pressure and other cardiovascular benefits, the new population-based study may be the first of its kind to suggest the confection can improve the risk of heart failure in particular.

You can read the article in it's entirety on Medscape here. 

Cough Hack Remedy

Image found here. 

Verrry Interestink.

Remember those old Laugh-In shows? Sure. You young people can snicker all you want at we old fogies. But that was darned good humor, so there.

Anyway, in my truckload of prednisone/codeine cough syrup/albuterol little world today, I find myself muttering Arte Johnson's famous phrase as I am observing my body's reaction to this particular batch of pharmaceuticals added to my asthma. Or whatever the heck this is.

I looked for a YouTube of Arte actually saying his line, but it isn't out there in video form. I did find a recording of him saying it on a little 45 rpm record. Yeah, yeah. I'm old enough to remember the vinyl days.Yuk it up, you young punks. But listen to it - I double dog dare you not to laugh.



*cough* *hack*

So my point here is, um, what was it again.....oh yes. My point is that my old bod hasn't been subjected to this particular concoction of medications before and that IS verrrryyyy interestink.

I find myself feeling hopped up by all this prednisone - both pill form and inhaled - and albuterol. Kind of boing boing-y. As long as I am limiting my physical activity, I feel boing boing-y and antsy, but my cough is much much better.

But - when I actually physically boing boing around, my chest tightens up and my cough and hack come back. Which, in a way, maybe isn't such a bad thing since now I am actually seeing what was stuck way down there in my lungs over the last week...ew.....

So. Usually when I'm on this much prednisone, I would have eaten so much chocolate cake that I'd have frosting stuck in my ears. From planting my face directly into the cake. But - getting up and baking a cake and icing it or going somewhere and getting one sets me off into one of those nasty cough hack sessions.

Verrrry interestink. This combo of meds and asthma turns out to be an effective chocolate-cake limiting factor.

I'm forced to calm my carb cravings by whatever food is handy. So far, this has been organic corn chips and spelt bread. Which is not something that I would gorge on, even spurred on by prednisone. I specifically told John not to bring home any chocolate cake. Even though I really really really want him to...so he did buy some very nice grapes.

Grapes.

Sigh. Interesting.

I Hate Little White Bags

Good grief. What a druggie I am. 

Sometimes, I HATE it when I'm right.

Yesterday, as I was coughing, hacking, wheezing, and dripping with perspiration in the doctor's waiting room, between gasps I realized two things.

First, I knew that people were cringing and moving as far away as possible from me, and I didn't blame them.

Secondly, I had a suspicion that when I left that appointment, I would be carrying that dreaded crisp white bag bulging with new pharmaceuticals. To add to the already horrifyingly full shoebox of meds already sitting in my pantry.

Dang. *cough* *hack* *wheeze*

After a discussion and a thorough exam, the doctor left the room and returned with an ultrasonic nebulizer loaded up with albuterol and saline solution. As I inhaled the strangely salty mist, the doctor began explaining what he thought my problems were.

"Well, I think you've got some asthma going on here. I don't think it's the allergy-induced asthma, but rather an asthma type of response to a bronchitis. Your airway passages are dry due to the Sjogren's syndrome and they're over-reacting to the bronchitis. But regardless of cause, it's really making your lungs unhappy."

I nodded, unable to speak since I had a large blue plastic tube stuck in my mouth. Which is probably a good thing since in my cough hack wheeze - induced crankiness, I probably would have said something along the lines of, Well, duh! I had that figured out already! 

He went on to discuss the merits of various medications, and as I listened and the nebulizer worked it's magic, I felt my breathing ease slightly. Thank goodness.

So. I was right, and I did leave the clinic with my white paper bag. And after figuring out the machinations of inhalers and spacers, and enjoying the effects of codeine cough syrup, by night time I was feeling much better. I had to grudgingly admit that sometimes the contents of crisp white paper bags were not so bad, after all.

*cough* *hack*

By golly, I think I've lost the wheeze. Can't wait until the cough and hack are gone.

Meow

The newest Simon's Cat cartoon animation is out! I love this guy! This has NOTHING to do with Sjogren's syndrome!! Watch it anyway!!!

The Moisture Seekers Newsletter

Cover of TMS from Summer 2008

This month's issue of The Moisture Seekers, a newsletter published by the Sjogren's Syndrome Foundation, contains several interesting nuggets. As always. If you aren't already a member of the SSF, consider joining. Your fees help support research, advocacy and awareness of Sjogren's Syndrome. AND you receive The Moisture Seekers newsletter.

Page four contains a great picture of fellow Sjoggie Jenny Pettit, who writes UII Understanding Invisible Illness, and her team that participated in the Philadelphia Sjogren's Walkabout earlier this year. The groups participating this spring in Sjogren's Walkabouts or Sip for Sjogren's events collectively raised over $300,000. Impressive!

The front cover features an article written by Keith Wilkinson, NMD and discusses the benefits of eating a diet rich in anti-inflammatory foods. If you aren't already a subscriber to The Moisture Seekers, here is the same information in a patient education sheet courtesy of the Sjogren's Syndrome Foundation:

Inflammation is a component of Sjögren’s syndrome and essentially all autoimmune disease. From a naturopathic perspective of treating the cause of disease, one of the first ways to address this is through an Anti-Inflammatory Diet. This upstream approach to treatment focuses on avoiding pro-inflammatory foods and eating a diet rich in anti-inflammatory foods. Additionally, since medical research is converging on inflammation as the common link in most diseases (i.e., heart disease, Alzheimer’s, asthma, diabetes, cancer, etc.), eating an anti- inflammatory diet is a great model of dietary health for everyone.

Avoid most packaged foods with a long list of ingredients. When preparing foods select raw, fresh, steamed, or broiled options over fried, BBQ’d or highly-processed choices. Specific recommendations are:

Eat More

• Colorful Whole Fruits and Vegetables – Eating foods with deep red, yellow, orange and green colors provides vitamins and minerals, phytonutrients, fiber and potent antioxidants that minimize inflamma- tion. Eating foods as close to their unrefined state preserves the content of these beneficial nutrients.

• Healthy Fats – This includes the omega 3 oils found in fatty fish (salmon, mackerel, sardines) and foods such as avocados, extra virgin olive oil, raw nuts and seeds.

• Fiber – Fiber promotes adequate bowel movements, creates a favorable environment for healthy bacte- ria in your gut, and supports the body’s overall detoxification process. A few tablespoons of ground flax seeds daily are a great way to add soluble and insoluble fiber.

• Moderate Amounts of Organic Meat – Grass-fed beef or bison is higher in anti-inflammatory essen- tial fats. Organic free-range chicken tend to be lower in antibiotics and are fed a vegetable/grain based diet which tends to offer cleaner sources of protein.

• Spices/herbs – Seasonings such as garlic, ginger and turmeric add an anti-inflammatory component to the diet.

Eliminate / Eat Less

• Trans or Hydrogenated Fats – The body has no mechanism to use these unnatural fats that ultimately cause inflammation. These should be eliminated from your diet.

• Refined Oils – Commercial safflower, corn, and canola oils have had much of their health-promoting content removed for shelf-storage purposes and tend to be high in omega 6 fats that can be converted to inflammatory arachadonic acid, a type of fat that stimulates inflammation in the body.

• High Glycemic or Processed Foods – Highly processed carbohydrates such as bread, pastas, cakes, candy, fruit juice and corn syrup are quickly digested leading to a rapid rise in blood sugar and a subse- quent inflammatory cascade stimulated by insulin.

• Red Meat – Avoid these meats when possible or eat organic grass-fed meat to reduce ingesting high levels of pro-inflammatory arachadonic acid.

• Common Food Allergies – Milk products, eggs, gluten from wheat and peanuts can cause inflamma- tory reactions in many people and are best avoided.

• Artificial Sweeteners & Preservatives – These additives have no nutritional value and tend to promote inflammatory reactions.

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

Um. About that diet, Dr. Wilkinson......I'm trying. Really I am. But can you tell me where it recommends frozen mango margaritas? Gotta be in that list somewhere..... 

Viruses Everywhere

My poor laptop.

It's suffered such abuse lately and it sure doesn't deserve to be treated badly. I don't know what I would do without it.

Let's see....what all has happened this week.....

Well, the most egregious trauma was definitely inflicted by my doggie buddy Skippy, who visited us for two weeks. Our boy Skipparoo is still a puppy with puppy teeth and puppy chewing habits. He chewed through my MacBook power cord. It's fortunate that he didn't get a serious shock. But unfortunate for my lappy.

Next up was discovering that a round of emails had been sent out from my account advertising online Viagra. So sorry if anyone out there received these emails from me.....but y'all should know by now that this is not my usual subject matter for correspondence. It seems that someone had hijacked my email account and decided to do a little spamming. So John - bless his heart - helped me to reset passwords, and to purchase a PRICEY virus/malware/spyware program specifically for Macs, got the thing loaded and in action. We were glad that we bought it, though, when six nasties were rounded up on the first scan.

I thought one of Mac's greatest assets was it's inability to become infected with computer viruses?!

Most recently? My letter "u" seems unhappy and sticky. If you note a few posts that have uuuuuunusually spelled words, this may be the case.

It appears that both my Mac and I need to get to our respective doctors. *cough*
*uuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuu...........*

We Are Not Amused

It's been hot hot hot here. Temps this afternoon are expected to hit mid-90s. If the air has risen to such hot temperatures, I wonder how hot a patch of black asphalt pavement could be.....? Or more specifically, that patch of black asphalt in the direct sunlight WITH a largish blob of chewing gum on top?

Yep. Stepped right on it.

Didn't figure this out until I noticed my sandal sticking to poor Goldie's floor mat. And when I pulled into the garage, saw strings of white goo attached to my shoe, the floor mat, and Goldie's door.

Dagnabit.

I've heard that putting ice on chewing gum helps to remove it. Anyone have other suggestions?

So we are NOT amused. I've been hacking and coughing - still - and yes, am going to go in to see my doc. It seems that any little additional tax on my energy puts the whole energy equation out of whack. I seem to know what my energy needs are for the run of the mill day with housework and errands, etc. But coughing seems to take more than it's fair share.

I don't waaaannnaa spend precious energy scraping stupid dumb frozen gum out of my car and shoes.

Oh, hey. I wonder if a frozen mango margarita would help things along?

Right-o. And remove the gum too.

Western Wildfires

We've lived in the foothills of the Cascade mountains for almost fifteen years, but we saw something new last night - a wildfire on the western side of the mountains. John saw the smoke before I did.

We watched it spread, then the arrival of helicopters carrying water.

Go get 'em, guys.

What a grim show from our deck. I have a new sense of respect for the people who specialize in fighting forest fires.

I'm Going To Start Counting Them

I thought two baby octopus sightings on a dinner plate in one summer was plenty.

Apparently, two isn't enough.

John and I went out for lunch today at a Chinese restaurant. We ordered Happy Family Yuk - a mixture of various seafood, chicken and beef with seasonal vegetables. Yum.

I was eating with gusto until........(imagine ominous music here)....duh duh DUH!!!

Another tentacle sighting. Bleah. Blindsided. I was so NOT prepared for another octopi infested dish.

Maybe instead of actively avoiding these things, I should start counting them. I think I'll try to figure out how to put up a slide show on my sidebar.....

Check it out. It's labeled Tentacle Ticker, and I'll keep adding pictures if I'm unfortunate enough to continued to be served them.

Oh - hey! Will you send your octopus sightings to me? I'll add them to the slide show!

A Momentary Lapse of Judgment.....

I may have made a mistake of gigantic proportions. 

But I'm not sure. 

So John and Greg headed out last night on another one of their missions - this one involved heavy lifting and a BBQ grill so they were excited. As they were heading out the door, it occurred to me that they would be able to do an errand for me on their way. Without giving this much thought, I handed over a cake. To these two guys. And asked them to give it to someone for me.  

Initially, they looked dubious - for about two seconds, after which they simultaneously grinned wickedly.  

I realized my mistake as I listened to their conversation heading out to the car. 

"She didn't say that we had to deliver this particular cake."

"Why, no. She didn't, come to think of it."

They looked at each other and grinned again. 

Hoo, boy. What was I thinking.......?

You Deserve Good Care

Image by hoefi

Recently I received this letter:

Julia, 
I just wanted to say thank you for your blog site. I have related to you on so many levels. I do not have a Sjogren's diagnosis as yet, but I suspect it. My father suggested that I could have this condition after he was diagnosed several years ago. Sadly he died shortly after his diagnosis due to complications of Sjogren's. I was tested after his death, and when the blood test came up negative, I really didn't think about it again. 
     I have many symptoms of this disease and my most recent problems caused me to rethink SS. Recent symptoms include episodes of joint and muscle pain, sometimes with low fever, and an incredibly dry scalp with small bumps, some even hard when palpated. 
     I am a second year nursing student, and struggling with cognitive changes (SloooMooow describes it best). Eye and vaginal dryness as well. When you describe your experiences, I see myself.
     Do you have any suggestions of how to approach my doctor? My doctor already thinks I'm a hypochondriac. I am about to fail out of my RN program and I am devastated. 
     - C.

C's letter makes me wish that she could magically appear in front of me so that I could give her a hug. I wish I could make things all better, I really do.

I chose to post an edited version of her letter on Reasonably Well because C. has voiced the same concerns that I have heard from many others: She's having significant health issues. She wants answers and help but her physician is not taking her complaints seriously. What to do?

C., please know that you deserve good care. If you have the resources to choose another doctor, do it NOW - be it another general practitioner or get a referral to a rheumatologist. This, I think is one of the most important things that a health care consumer should know - that as long as you communicate your concerns in a respectful and clear way, you deserve the same in return from your doctor. If you aren't being treated this way, fire him/her. You deserve answers.

You deserve answers, you deserve good medical care, and you deserve the support that you need to be successful in your career goals.

I would advise you to begin taking the best possible care of your body that you can as you and your physician explore the root cause of your symptoms. Being in a rigorous course of study such as nursing, you need to stock up all of your body's reserves. Eat well, get lots of sleep, and minimize the stress in your surroundings as much as possible. And I know......reducing stress is a difficult thing to do, especially during college. Look for valuable emotional support from those that care about you. It's so important right now. Limit the time you spend with those that seem to drain energy from you. You need every ounce of energy to be successful. Gravitate toward those relationships that nourish and support you.

All these things will help you to deal with your " SloooowMooow" brain. Unfortunately I don't believe that there is a medication at this time that will resolve brain fog. I sure wish there were. You can read more about brain fog here and here.

You may want to consider taking fish oil supplements in recommended dosages. You can read more about the benefits of fish oil and it's omega 3 fatty acids here. Several studies have shown that omega 3 fatty acids assist in the body's defense of inflammation such as can be experienced in those sore joints. It has also been linked in preliminary studies in the successful reduction of dry eye symptoms. You can read more about omega 3s and their suggested use here and here.

You may want to explore a few ways to deal with your dryness as well. You mentioned that your scalp in particular is problematic. I have found that my days of washing and drying my hair daily are long gone. The skin over my entire body, including my scalp, has become increasingly dry and flakey with the arrival of Sjogren's syndrome. It has been suggested to me that I wash my hair much less frequently since even shampoo designed for dry hair can strip precious oils and moisture from your scalp. I also air-dry my hair whenever possible. When using products that moisturize your skin, be sure to look for products that don't contain any form of alcohol such as in frequently seen in skin lotions. Butters and creams usually contain less or no alcohol so are less drying to the skin.

I have only touched on a few of the many issues that follow with autoimmune disease. If you want to read more, see my sidebar for other posts and links to other sites.

I sincerely hope that you can find answers to your medical concerns! And I'm wishing you all the best with your studies! Hang in there - we need more good nurses and care providers who can understand the difficulties that those of us with autoimmune disease face.

Readers? I'm asking you to chime in here. We have all found ourselves in that "what is wrong with me" stage. What other suggestions do you have for C.?

Mrs. Cranky Pants

Little Miss Crabby Pants found here. 

Well. I'm miffed.

I had a post all ready to go for today, but it disappeared somewhere in the great unknown Blogspot black hole.

Yeah. It was a great post. A magnificent post. My most spectacular post ever. And now it's irretrievably gone. What a shattering loss to the blogosphere.

So you're asking why I can't re-create it?

One can't just produce a masterpiece on a whim, here, people. Could DaVinci just sit down and recreate the Mona Lisa? Could Dave start a new Wendy's hamburger joint with a snap of his fingers? And what about the guy that invented Cool whip, huh??? You think inspiration like that just flows without stopping?

OK......I confess. I can't rewrite it because......it was so boring that I can't remember it.

Busted.