Wednesday

Tuesday....

This photo was taken yesterday..... when your pinky MCP and your index finger MCP are at war for space on your hand, has the sh*t officially hit the fan? It's a good thing I was not on schedule to work yesterday because I woke up with my face nearly unrecognizable; the bones in my nose had swelled so badly it literally hurt to breathe.

Since I'm trying to take it a little easy for a day or two, I was thinking about adding some more travel tips to this blog but typing is kind of not a plan today either. Spoke with my doctor yesterday about options to help deal with this flare and we have a couple of ideas in case things don't settle down soon, but for now I am just using my best tools of rest, anti-inflammation diet and no further drops/changes in the steroid dose until my body adjusts.

This will get better....

Monday

Patience, Prednisone, and Pompadours

It's been another week now and I have been able to decrease my dosage of the prednisone twice, down 50% from a month ago. My appetite has returned to somewhat normal - I no longer have the intense desire to eat four bags of caramel corn in a row, opting for smaller, healthier meals throughout the day, however the scale still hasn't budged from last week's numbers. In fact, the number waxes and wanes up and down the same four pounds no matter what I eat/don't eat or with whatever exercise I add to my routine. Four pounds doesn't seem like it should be much to complain about but when I'm working this hard for pretty much NO results, it is frustrating. Combine that with the fact that this weight sits directly in my midsection and makes it hard to breathe, move and even dress the way I normally do, it remains for me a matter of some concern.

I know that this will all work itself out over time so I'm not especially worried that the scale seems to be intent on TRYING to make me have a bad day; with monsoon season here and humidity during the day over 70% (usually 26%) I do have more important things to concern myself with than the high (1)80's registering on my bathroom scale. I really do believe that by following the "rules" of what's best as far as eating at least 80/20 anti-inflammation foods, getting proper rest (proper for me, that is), and adding gentle exercise, I will feel better and eventually my weight will stabilize and return to where I'd prefer it to be.

To that end, I rode my new bike to the farmer's market on Saturday - lest you think this was a huge feat on my part, I live about a quarter mile from the market. There is a bit of incline on the way home, so for me, just not falling off on the way home was first hurdle, the second was learning how to use my gears so I could pedal up the inclines. Riding instead of walking helped me stay off my still-tender ankle and I felt pretty good about this latest "baby-step"on wheels.

With exercise tended to, diet is the next concern. Working the evening shift means I am not home for supper and as every procrastinator knows, this probably means eating Pringles at least once in the past week for dinner. Over the weekend I did some meal planning to make sure chips are not on the menu again anytime soon. I came up with a lime and cilantro rice that I'm pretty sure rivals that of my favorite rice at Chipotle -

In a rice cooker (or on the stove if you happen to prefer) - add

2 cups long grain white or brown rice, rinsed well
zest of 1/2 lime
1/2 bunch of cilantro chopped fine
1/2 t salt
2 t olive oil
1 bay leaf
1 whole clove
and use chicken broth instead of water in proportions to rice and method you are using.

Cook as per instructions on the bag. When cooking is complete, stir once and allow to stand for 20-30 minutes with the cooker open to allow steam to escape. Chop and add fresh cilantro to each serving to heighten that flavor.

To take this dish to work, I made a "rice bowl" in tupperware; rice on the bottom, then layer lowfat black "refried" beans (just mashed with a little garlic, salt, chicken broth), a little queso fresco, a single serve packet of guacamole, some chopped onions, and more fresh cilantro.

I mentioned proper rest as well; I am rediscovering the power of a good nap. Every day before work, I shut things down midday around 1pm and lay down for an hour. I have been able to sleep about 40 minutes of this time and I feel much better when I wake up and hit the ground running. Getting home around 10pm, I tend to go to bed around 12-1am and average around 7hrs sleep. The insomnia has lifted for the moment - I guess being uber-busy has side benefits!

So, in the meanwhile, still having wardrobe issues; down to one last pair of jeans that still have room, and rotating my other limited pieces carefully for work. I'm finding that the accessories really do matter in creating different looks with the same base pieces. Just like with my hair, these day, the bigger, the better as far as necklaces, bracelets and belts! With my hair, I am getting pretty good at creating the pompadour hairstyle which despite getting totally rained on yesterday evening at work, still looked pretty good considering the frizz factor. Hard to get that look to photograph well since from certain angles in pictures it just looks like I'm trying to channel Buckwheat's ghost.



Three Reasons Why Gaining 26 Prednisone Pounds SUCKS!


Okay.... I thought twenty was a nice
round number to match my current nice round midsection but as the scale has been holding fast to numbers that make me wince (currently 26 pounds), I have had to reconsider my stance in my last post.

While I'm not exactly going to let the number or changes in my appearance affect me in a negative way, personally I need to use the awareness to make some changes that hopefully will help get things back to where I am comfortable in my skin, literally. There are in general three things that bother me about being this size and I guess it's a blessing in disguise that since I had been on prednisone for over 20 years, I actually have some experience in how to counter some of its effects -

Sucky thing number 1: Less and less clothes that fit properly. After the first 10-15 pounds appeared, I had already weeded through my closet and picked the items that fit best, but there are now a few things that feel "clingy" which have been relegated to a plastic tote for the moment. I don't need that favorite paisley top taunting me while I am working hard to get back in it's good graces so for now it's out of sight out of mind. I've also googled celebrities that tend to have swings in their weight to see how they handle keeping a sense of personal style; Jessica Simpson has my vote for rockin' it any ANY weight. I will skip the daisy dukes and handbags that could smuggle a small child, but I will look for more items that nip in at the waist, show a little bit of skin at the shoulders/neckline, and if all else fails big hair and a bigger smile.

Sucky thing number 2: I was able to cut my dose by 25 percent this week but still have a beastly appetite. I have found that by eating better quality food I feel more satisfied and eat less. There are a few things I simply CAN'T keep in the house anymore including soda and that new organic caramel corn I was so fond of - found out the hard way it is possible to eat FOUR 8oz bags in one sitting. Cooking at home and eating regularly timed meals has been helping; I am making half recipes of whatever is on the menu and using the best ingredients from our local farmers market for inspiration.

Yesterday's special was homemade thin crust pizza using my own dough recipe and some gorgeous purple onions from Dark Star Farms. One 7 inch personal pie was made with a couple of table spoons of fire roasted diced tomatoes (drained), and a sprinkle of coarse salt tossed on top, some fresh mozzarella, and some basil from my patio garden. The other pie was topped with a little olive oil, some ready-made basil pesto, mozzarella, a few cubes of pre cooked chicken breast and a generous helping of those purple onions. One way for me to curb eating too much of a good thing at one sitting was to slice both pies and put the rest away immediately. I got to try half of both pies and even had supper or lunch ready for another day.

Sucky thing number 3: Pain. Since I started my new job I've been able to split my doses to first thing in the morning and the second one about an hour before work which means there are at least two times during the day that I feel like crap. I feel best if a can take an hour nap before the hour I take to get ready.

I also have taken every opportunity I can find to be more gentle on my body; since my ankle is mysteriously tender and a little swollen I cut a piece of my Pilates mat in the shape of my footbed and stuffed that in my largest pair of Crocks. It feels like walking on marshmallows but it's pretty stable and has help soften every step while the ankle heals.



I think things are going pretty well considering that I've added about 20 hours of work to my schedule, bought a new bicycle and rode it this past week, managed the usual day to day housework, errands and such, and so far I'm still standing.









Sunday

10 Great Things About Gaining 20lbs On Prednisone


For those of you that know me or have been longtime followers of this blog, you know that I tend to follow a pretty CAM/Holistic approach to managing my health - and yes, Lucky Charms are made of Whole Grains so my sister can stop laughing right now!!! To clarify what some people may view as a somewhat shaky stance on health issues in general, I view my philosophy on nutrition (which is whole hearted but half assed) as quite separate from my desire to stay as med-free as possible at all times. I have been off prescription medications more than on them since 2007 and as a general rule, try to avoid small orange bottles by whatever other first line of defense means necessary including diet changes, rest, heat/massage, meditation etc. However, a few times a year when I travel to visit my children and family on the east coast, I allow myself a pulse dose of steroids to be able to manage things.

With two back-to-back trips to NY last month, I found that after the first trip I gained about 9 pounds but tapered within a week and lost 7 of those pounds. The second trip was a little longer and again very hot and humid in NYC so I was on much higher doses than this desert gypsy would have liked, and the taper did not go as well this time when I returned to Southern Utah. All told, as I celebrate the one year anniversary in my new home at the end of this month, I will be 21.45 pounds heavier than I was a year ago when I moved in.

This time around, knowing that for the most part my weight without prednisone is pretty steady (plus or minus 5 pounds) and it will come off again, I have decided to relish my chunky-monkey-ness by having fun with my wardrobe and accessories around my new curves. Yes, barrel- shaped is curved you know! Sense of humor is keeping pace with my expanded waistline....

The more I think about it, the past few weeks that have followed on the tail of that wonderful trip to visit family has kept giving me new reasons to feel lucky, happy and healthy every day - and so, off the top of my sleep deprived-yet-all-the-more-crafty-and-creative-head, here are 10 great things about gaining 20lbs on prednisone :

1. I have tried some new hairstyles to accommodate my fuller cheeks; I got myself out of a longtime hairstyle rut I hadn't realized I was in and found something even I have to admit is pretty damn flattering.

2. Even if it's just temporary, almost every single fine line on my face has virtually disappeared!

3. Since I am hungry ALL THE TIME, I am more conscious of what I eat. More often than not I make sure it's something that is good for me yet intensely satisfying. I have now perfected the art of the decaf soy mocha latte. The secret is a 1/2 teaspoon of Dagoba cocoa powder with chilis - indescribably good! I also grill a pretty prefect chicken burger with carmelized onions, topped with the best yellow heirloom tomatoes bought this morning at the farmer's market and a healthy dollop of homemade aioli - okay down here we call it fry sauce, but whatever!

4. Since the rapid heart beat and sometimes elevated blood pressure give me rabid bouts of insomnia and restlessness, I have tackled projects big and small around the house and returned to creative outlets like decorating, cooking, my art and my blog. My place has never looked better and for the first time I can remember, I can find absolutely everything which gives me more time to write, plan, dream, and create.

5. I've started swimming again several times a week. I didn't realize now much the kid in me missed it.

6. Since I am already on prednisone, I do actually feel less pain and more physically "fit"; I applied for and GOT my dream job this week. I am working part time at a small fine gallery and pulled the last four days of training in a row without collapsing. In fact, I feel relatively good which is beginning to surprise me less and less. I taper a little bit every three-four days now to help my system avoid any other major upheavals.

7. I am more accepting of the idea that - "it is what it is" - as in right now I am 184lbs and I'm just going to do the best I can all the way around either way. I also am accepting that even though there were supposed to be ten of these great things about gaining 20 pounds, there's only going to be seven because it's after 2:30 am, my back is starting to tweak a bit from hunting and pecking over this keyboard with two fingers, and I am finally getting tired.

Seven is a good number though.











Friday

We love NY in June, how about you?

Teddy, my service dog has racked up some considerable frequent flyer miles over the past three years. Here we are on a June trip from NYC to Las Vegas.

For those of you traveling with service dogs under 12lbs, you might find as I do that if you and your pup like to nap during the flight that a sling type carrier makes things just a little easier and comfortable for both of you. The Fundle Carrier available on Amazon is one I'd like to try but my crafty (ok, and cheap!) side took over this challenge and I made one out of a favorite scarf which has multiple benefits:

The scarf is cashmere which is soft, strong, lightweight and helps create a wonderful sling/hammock effect for Teddy, yet provides a little warmth when needed on sometimes chilly airplanes. In the color gray, it coordinates with all of my outfits, and Teddy's coat too! It can be "dismantled" in five seconds flat to provide a scarf, blanket/wrap, or back to a carrier again.

Directions: You'll need a piece of fabric with some stretch to it or a ready made fine gauge knit scarf that is approximately 2.5-3 ft wide by about 5 ft long (these are approximate measurements depending on your height, shoulder width, size of dog, etc.), and a 3 ft piece of grosgrain ribbon. Lay the fabric flat and fold into thirds lengthwise as if you were folding a shirt face-down to have the sleeves touch in the center of the back. Then, take the top end and fold down in half on top of itself and gather the ribbon around about 10 inches or so from the loose ends of the scarf and tie a single tight knot. Grosgrain works better than silky ribbons here since you might want to rework the ribbon placement a few times. Place the sling over one shoulder and place an object like a bag of flour or similar in size/heft of your pup inside the "sling" to test the height of the ribbon. Be sure to fan out the portion of the sling that rests behind your shoulder to distribute the weight properly - this makes a world of difference and helps avoid ANY shoulder strain. Lastly, make adjustments to the placement of the ribbon as needed and tie several knots with a bow to finish. Voila'!

My sling can be seen in this little video with Teddy on my lap in flight looking out over the Nevada landscape. Handmade, custom made and personalized service dog patches such as the one on Teddy's service vest can be found on eBay. I recommend Sue of Suzydiditdesigns; her store can be found by searching by the seller name czarsk on eBay.

Please message me directly for questions or to purchase the vest from my vendor at a discounted price of $34, available in gray and several others colors with white reflective panels.

video

Tuesday

my journey....


I am 40 a year old mother of two and I have had Systemic Lupus since my teen years. I also have an overlap of Rheumatoid Arthritis which caused severe deformities resulting in having the joints replaced in my hand at 35 years old which is virtually unheard of. My hips were next on the list to go bionic, but the hand surgery was so excruciating I declined it. My surgeon was very butthurt that he had to downgrade his new yacht. Since then I have broken my kneecaps off twice because the steroids destroyed what little muscle tone I had, very curious given my very strenuous daily workouts of just getting to the toilet on my own. Fabulous arm tone too as you might have guessed which did not hold up quite as well as I would have liked when I fell in my own kitchen and broke my shoulder in three places and cracked my humerus bone which was not really all that funny.


I was given last rights a little over two years ago because I was being treated with a type of chemotherapy that was potentially fatal. Having been hospitalized four times in a twelve month period, I was also considering a stem cell transplant because my lupus was refractive and totally out of control. I have tried literally every drug on and off label in every permutation and combination possible. In addition to traditional/western medicine, I have been macrobiotic, vegan, done cleanses, magnets, biofeedback, naturopathy, chiropractic, chinese herbs, acupuncture, alternative treatments, and mind/body medicine of all kinds. I have read so many books, blogs and articles on the subjects at hand, I could probably write one. In living with SLE and RA, I deal with chronic pain, severe joint deformities, migraine headaches, syncopal episodes, discoid lesions, elements of Raynaud's Phenomenon and Mixed Connective Tissue Disease, pleurisy, asthma, insomnia, anxiety, and the many side effects of my treatments such as massive scarring from high dose steroid treatment, just to name but a few.


I got fed up with the system and being sick all the time and so I fired my medical team and hired myself, figuring there wasn't much I could do to screw things up any worse than they had already done. Since 2007, I got off 13 daily meds, changed my entire lifestyle, moved from NYC to rural Utah and started over. I am still off daily prescription medication but I question this on a daily basis, especially when the pain gets out of control. It can be very scary at times not knowing when your health is going to tank again but I try to stay positive. I would never recommend that anyone do as I did and jump ship on their meds or their doctors but I know that there are people out there trying to live with this disease and they can feel very frustrated, alone, and scared. I feel these things too as I chart my own course with no maps, no guides. I feel comforted by the posts of others, I learn from them, I share their trials and triumphs. If you are still here with me, you must know some of the same struggles. I share my journey here, living with SLE, RA, and how I manage to live a ridiculously fabulous life in spite of the wolf at my door.


The photo with the top hat was taken in April, 2008. The profile photo and original content is from is from January, 2009.


Thank you for visiting. Your comments are most welcome and much appreciated; please take a moment to visit the comments section, my virtual guest book...


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Sunday

Road Test


This month my fabulous life will turn its' focus to the subject of traveling - with an illness that is often "invisible", an 11lb service dog, and what I've learned over nearly four years of what seems to be constant cross country travel....

On a recent back-to-back trips to NYC, I focused my attention to streamlining the entire process of how I get from Southern Utah to Westchester, New York on a very regular basis. I'll be breaking down my discoveries over several entries which will cover subjects like booking travel for air, shuttle, car service, hotels, etc. specific to differently-abled travelers, managing a 12 hour travel itinerary with a service dog, the most useful/user friendly travel aides, and the best of the things I have learned literally along the way.


This entry will review a new addition to my luggage - The JetCart Lightweight Laptop Carry On by Walkin' Bag . The Ultra Lite version weighing at only 4.8 pounds actually weighs less than my favorite handbag and is designed in such a way that it provides a sort of gliding handrail to help guide you along your way instead of using a cane. The ingenious design of their unique curved handle can support up to 250lbs. I was truly impressed with the smooth stability the handle provided - in fact, this is the first set of back to back flights in several years that I have not needed to use wheelchair assistance at JFK or McCarran. Traveling with a service dog held with one hand, and one to two bags to manage as well, I am often too unsteady with average wheeled luggage to be able to navigate the entire airport on my own. The return of a sense of independence was something I can only imagine I share with the Walkin' Bag creator and CEO Etsuo Miyoshi. To read full story behind the Walkin' Bag, please visit their website - http://www.walkinbag.com


Measuring 22" x 12" x 8", the dimensions and maneuverability of the JetCart glide with ease down the center aisle of the aircraft. Also, the JetCart fits in the overhead bins as most carry-ons do, but this bag quickly and easily detaches from the frame which then has the added benefit that it can fit under the seat of every major carrier I have flown. Once on the plane, this eliminates the need to lift a heavy bag over my head which can be uncomfortable on a good day or impossible on a really bad one. I also keep my computer, medications and service dog supplies easily at hand under the seat, eliminating the need to constantly move, stand, or ask for assistance during the flight.


By using a medium sized zippered vacuum-sealable bag (SpaceBag) inside the JetCart, I was able to carefully pick and pack clothing, shoes and accessories for an 11 day stay away from home. The fully packed bag weighed in at just over 26 pounds; when tested in and outside my home on tile, carpet and sidewalks, The JetCart handled room to room seams and transitions with ease. The handle height and design (which really does feel like a handrail that moves with you) meant I did not need use or bring a cane which was one less thing to pack, bring with, or worry about. The telescoping handle also adjusts at six height levels from 27" to 37" which accommodated my nearly six foot frame quite comfortably.


In testing "on the road" the bag fit easily on any seat in my car eliminating the need to open or lift in/out of the trunk. At the first stop along the way, the JetCart managed well over sandy areas at the shuttle parking lot and the four wheels that swivel 360 degrees virtually ignored bits of small loose gravel in our way. Upon our arrival at McCarran Airport in Las Vegas, the wheels moved easily over sidewalk grid marks, grooves, and slights changes in sidewalk height like those which lead from wheelchair access ramps to standard curb height.


I found that I needed to slow down and give a slight almost quarter turn going over the very deep sidewalk grooves like those we faced on arrival at JFK airport, but I had tried several other bags with either two or four wheels which could not compete with how easily the Walkin' Bag's design can make these transitions in a far more stable manner. The Walkin' Bag website contains instructions for positioning of your hand in guiding the curved handrail/handle; they explain and illustrate the best grip to use to obtain maximum stability and continuous smooth flow when making such transitions.


This particular bag is quite versatile - a soft sided carry-on designed to be a sort of rolling "office" with several pockets for a laptop, cell phone, file folders, change of clothing+shoes, etc, all of these same pockets were equally useful in holding the vacuum sealed bag with the bulk of my clothes in the largest pocket, sectioning off smaller items as needed in the remaining pockets. As a rule, I tend to wear the heaviest items of clothing when I travel to avoid having to pack them; blue jeans, blouse and/or lightweight sweater, windbreaker or vest with several pockets, and sneakers. I also usually have access to a laundry facility at least once during a trip. After careful editing, the items packed inside the bag included:


1 pair women's dress shoes

2 sundresses

2 tee shirts

1 nightshirt

2 lightweight tunics

1 pair pants

3 pair underwear

1 sweater

2 pair socks

1 jewelry wrap containing hair accessories and women's jewelry collection (8x2x2)

1 small first aid/emergency repair kit

1 small toiletry bag

1 curling iron

1 pocket digital camera outfit including USB cord and charger

1 evening bag black containing prescription medication

1 13" laptop computer


left side pocket: 1 pair loafers/shoes


right side pocket: lunch+snack kit in a "can" (see below)


back pocket: service dog supplies and essential paperwork for easy access


I purposely packed the JetCart to its limits to compare how the ultra-lightweight construction behaved in comparison with traditional four wheeled luggage. With the exact same items packed in a traditional type of four wheeled luggage of almost identical size, the competitor's bag would begin to lean when pushed on household carpet and would actually tip over at transition points like the bullnose of a doorway threshold. The JetCart could maneuver over average height household carpet at a slow walking pace without excessive effort or strain, and with speed and ease over the office type/low pile carpet found at both airports.


I will say that correct positioning of your hand on the handle is absolutely key in getting the best out of the design, but it is very easy to remember how/where to hold the handle because it feels natural in relation to the design of the bag that worked with my body. I should point out here that in testing this design I have specific challenges of artificial joint replacements in my left hand, weak/unstable wrists on both left and right, and severe deformities from ulnar deviation caused by Rheumatoid Arthritis in my other "good"/right hand.


More useful features: the top and/or front entry dual zippers made it easy to remove my laptop for security screening, and the fully open front made unpacking very easy. The side pockets were very handy for essentials I'd need before takeoff; I keep a pair of lightweight slip-on loafers at hand to use once I'm on the plane and these stored easily in the first side pocket. The second pocket I used to hold my lunch and snacks; I made a 6 inch sandwich on "sub" shaped bread, and then emptied half a can of Pringles brand potato crisps into a separate baggie. With half the crisps still in the can, I use the empty half to slide in the wrapped sandwich and top it off with two folded napkins or paper towels. My lunch+snack pack was not only handy and fit in the side pocket perfectly, but I got to discard one more item before even leaving the plane. Plus, after all that packing, it was late, I was hungry, I think it was only fair that I now got to eat the homeless extra Pringles in the baggie that wouldn't get to make it to the airport.


Appearance wise, it features a sleek, stylish design and comes in three colors - black, red, and brown, all with tan trim in a really attractive satin type nylon fabric. My only concern for this bag is that since this is designed as a carry-on, I would not trust this particular lightweight fabric or finish to luggage handlers; even though the fabric and construction seems like it is quite thick and sturdy enough to withstand a good amount of abuse structurally speaking, I would not want to see the fabric marred by a greasy, dirty conveyor belt.


The JetCart uses an quick release velcro-type tab system to attach its' bag to the frame; the bag is small enough to carry lighter loads without the frame, using the handles as a tote bag. I discovered another useful aspect of this design is that the wheeled frame could be used in the same manner as a luggage cart with other smaller items like a mini travel cooler if you have a strap or bungee cord available to secure it to the frame. I also found that smaller sized light weight travel bags that have a horizontal set of slits which can slide over the handle can be used to stack "piggy back style" over the JetCart handle which means I use one hand for my service dog and one hand to control ALL of my luggage!


The Walkin' Bag makes several other styles including a Ballistic Nylon a version with a seat, a ladie's tote style called Fortuno, and several others. Another great feature are the replaceable wheels which will prolong the life of your investment. Overall, I consider the JetCart design pretty flawless and exceptionally user friendly. I'll be posting more on packing tips including photos later this week to show how to get two weeks worth of clothes and accessories to your destination without breaking your back or the bank, with NO checked baggage fees or endless waits at a luggage carousel. Currently on sale on the Walkin' Bag website for $119.00, the company is also offering free shipping during this promotion. A link to be added here by me later this week will save readers of this blog an additional 10% off any purchase so be sure to check back soon....


Many thanks to Toru Saskaki of Swany's Walkin' Bag for allowing me the opportunity to review this item.