Freestyle Friday!

A number of things have been grabbing my attention. In no particular order:

The foolishness in Washington. Oh my, we're looking dysfunctional to the rest of the world! The House is hunkered down, the Senate is in a holding pattern, and the president is waiting it out. This is no way to run a government.

Social Security? I'm wondering if I'll get my check on Wednesday. I've read a lot of analyses by economists, lawyers, and politicos and, while folks think Social Security will be funded, the bottom line is that no one knows for sure. That's not comforting.

Tropical Storm Don. I am SO hoping we get some rain and a break from the heat but it's not looking very promising. This is getting depressing. Huge, deep cracks in the earth are proliferating in my yard and I am SO sick of not being able to spend any time outside. It's still in the mid-90s at 10 p.m. Simple, brief errands during the day drain me and I'm especially sun-sensitive, of course.

Pain. I've been in quite a bit of it lately. The effects of the pred. burst I recently did haven't lasted long at all. Huge bummer. My back and my hips are quite painful but even my wrists hurt, grrrrr. I am still waiting for my internist to coordinate with a new neurologist and new rheumatologist to set up appointments for me. I'm very, very tired of waiting and I can't make the appointments myself -- I tried. Now there needs to be a bunch of paperwork filled out for the referrals.

Soooo, in the meantime, I'm taking pain pills regularly, something I like to avoid when possible. I'm in this for the long haul and I try to use pain meds sparingly. But, barring real treatment and doctors' care, I have no choice. The pain and symptoms are beyond the scope of my usual conservative measures to keep things remotely tolerable.

Not a good time to be me so I'm distracting myself with good food, Netflix, and some used book sale finds! I made homemade gnocchi for supper the other night -- yum! I'll share my recipe in the next few days. I watched the movie Secretariat last night and enjoyed it so much!

And I just finished reading an older Dean Koontz novel called Mr. Murder. VERY interesting! I  started Sue Grafton's S is for Silence two night's ago and it seems good. When confronted with tens of thousands of possibilities at the Friends of the Libary's annual book sale, I rarely take chances. Because of my inability to walk or stand for very long, and because I have fatigue issues, I head right to the paperback mystery section and snap up the works of tried-and-true authors. I know I'll enjoy books by John Grisham, Sue Grafton, Dean Koontz (if you haven't read his Odd Thomas series, DO!), Patricia Cornwell, and the like.

I also picked up Atonement. I loved the movie and hope the novel is even more rich. That can be a gamble at times so I hope this one pays off! Of course, I'm always a bit worried about how Hollywood will treat my favorite novels, too, so it goes both ways!

Social Security worries

Generally, I stay immune from worries over political games because I understand how they're played. They threaten, call each other out, refuse to budge and, in the end, compromise or cave. But this one is hitting too close to home and it's gone on too long.

Do I believe they'll raise the debt ceiling before the deadline? Yes. But I'm concerned that they'll do it so late that there will still be repercussions. The markets are getting antsy. The foreign media are reporting that our Federal Reserve is concerned and working on contingency plans. This isn't funny or quirky or "politics as usual" anymore.

And so I need to work on my own "contingency plans." I'm heading to my local cable company office to return the box and remote control and to stop service. I just have the basic plan -- no extra channels or fancy equipment -- but if my disability is going to be delayed or cut then it's $35 I don't need to spend. I have Netflix and I can get the local stations if I fiddle enough with my antenna. That will have to do.

I'm also experimenting with cutting my blood pressure pills in half. I don't take them because I have high blood pressure. I have a weird heart rhythm caused by my autoimmune stuff that responds to BP meds for some reason -- my blood pressure has always been fine.  I know I can't go without the pills completely because when I've run out or forgotten to take it on occasion, the weird rhythm and palpitations let me know. But if I can get by on half a pill then I can make them last longer. My cardiologist has said in the past that it's OK to reduce to half if my BP is falling too low so I think it's OK to try this.

Thank goodness I just refilled my Lupus meds. Those are pills I absolutely cannot skimp on. My current dosage is just holding things together, away from constant crisis. Even so, I'm doing a prednisone burst because the pain a few weeks ago was troublesome. It was painful to even walk around the house and the fatigue was super-bad.

I have my thermostat set on 85. With the never-ending heat, I've given up on trying to keep the house cool and have to accept barely tolerable.  I really don't want to see my electric bill, especially if the disability checks are delayed. The bill is due the first week of the month, sigh.  So is my prepaid cellphone payment but that's only $20. I ditched my landline years ago. But the electric bill is a worry.

I will also have to cancel my medical appointments if this isn't resolved soon because I won't be able to afford the copays. I scheduled them a month ago and got the first available appointments so that means I'll have to wait months longer if I have to reschedule. This is problematic, especially since I'm having to self-medicate to control new symptoms that really need doctors' attention.

I'm blessed, though, to have affordable housing and lots of food (I stock up when I find exceptionally good sale prices). I won't starve or be homeless. Still, is it acceptable for someone who studied and worked hard but unfortunately was stricken with serious, incurable diseases to have to worry about keeping the air conditioning and fans on during the hottest summer on record because the politicians are grand-standing?

Perhaps I should invite our president and some Congressional leaders to my little home so they can have their discussions here and consider how their games are affecting the "little people." I'll make plenty of iced tea but the AC will have to stay on 85.

Texas summers are hot but this is crazy!

Today is the 40th day of 100+ degree temps where I live. The all-time record is 43 and we will break that easily at the end of the week. To say it's oppressive is an understatement. It's dangerously hot, pathetically dry, and there is no relief in sight.

I have literally had to live like a bat -- blinds closed, drapes drawn to keep the intense sun and heat out. Lupus and the medications for it make me extremely sun sensitive. I was outside for about 15 minutes last week during the day and was careful to apply SPF 50 sunblock on my exposed skin. I got what looked like 2nd degree burns on my shoulders anyway. I really can't be out in this heat.

Sadly, it's not even cooling down well at night. We've been breaking records for highest low temps, too! It's still in the mid-90s near midnight and doesn't cool down to the low 80s until a few hours before sunrise. Then, the heat-up process starts again.

I've had to make some drastic changes to cope since I simply can't afford to keep the house pleasantly cool 24/7 and function in this weather. The solution? Changing up my days and nights. I'm having to stay up very late to do chores, exercise, etc. so as not to heat up the house or worsen my fatigue and migraines by doing too much when it's hot. There is a narrow window in which the temperature dips below 90 degrees.

I can't believe it's only July and we have another couple of months of this. My dogs aren't enjoying it, either. I have to put them outside in the middle of the night to play and run off some energy.

Diet changes and food choices

I've always eaten a balanced diet and believe in moderation. But gastro-intestinal problems that turned out to be Crohn's Disease have shaken up how I eat and the choices I make. Raw veggies are a no-no now. I can't eat salads full of them. And I'm supposed to cook my veggies to mush and eat canned fruit. Ewwww.

Probably the biggest change comes in the number of times I eat every day. For much of my life, I'd skipped breakfast, eaten something simple for lunch and then had a regular supper. I can't do that anymore. Now, I graze and I've had to find easy but nutritious foods to eat throughout the day since I really don't have the desire or energy to be cooking all of the time.

It's difficult. Salads are simple but my intestines can't tolerate them. Applesauce and yogurt work well but I get tired of them. Crohn's brings cyclical constipation and then going to the bathroom constantly which can make you not want to eat much at all if you're not careful. Like most people who don't even deal with autoimmune stuff, it's easy to get stuck in a food rut, tired of everything.

So, I was looking for ideas when a new Natural Grocers store opened recently in my town. I've been shopping there and have become very excited about the different, healthy food options available! There is no way I could afford to buy strictly organic and natural foods but the store is a big help in finding healthier products I can use to make my food options more interesting.

I am utterly addicted to their Sweet Pea snacks. A handful of those provides a great little pick-me-up any time of day! I'm also using the shirataki tofu noodles as a substitute for regular pasta sometimes. A little goes a long way if you have Crohn's, though, because they are chockful of fiber and make you feel very full. The store also has a good selection of ethnic foods, and I've picked up some Indian and Thai sauces that are excellent! Very nice selection of cereals, too, way beyond Kashi, which I've tried in the past and hated.

What seems to work for me now is to have grains for breakfast (through cereal with fruit or whole grain toast), some sort of veggie, fruit, or soup for lunch, an afternoon snack (handful of sweet pea snacks, for instance), lean meat and veg or rice/pasta for dinner, and then another evening snack of fruit or veggie crisps. Oh, lest I forget, I really MUST have dessert after dinner. I need something fun and sweet. Usually, I'll have some ice cream, a couple of cookies or a piece of cake if I've baked. That is non-negotiable and I pity any doctor who tells me I can't have dessert!

One thing that MAY be negotiable, though, is the source of the sweets. I recently got a free sample pack of soy pudding that I intend to try within the next few days. If it's good and reasonably priced, I will buy it and add it to my dessert options. If it's awful, then forget it. But, sorry, I will never give up cake or real ice cream completely unless a healthy option emerges that involves absolutely NO sacrifice in taste and texture.

Plus, I have really horrible reactions to alternative sweeteners which I discovered entirely by accident. I wish they'd stop sneaking those into "healthy" options because I now have to read the labels on products very, very carefully or discover the hard way later that I'd unwittingly ingested a food or beverage made with aspartame.

What products do you enjoy and recommend? How have you changed your eating habits?

Dying to see "Harry" -- and not

I've read the whole series at least three times through and I've watched the movies over and over again. I've been debating all weekend whether I should rush off and see Harry Potter and the Deathly Hallows, Part 2. I'm so eager to see it -- and not.

It's sad to realize that when the final credits end, that's it. Barring a major reversal by J. K. Rowling, there will never be another book or another movie. I don't think I'm quite ready for it to end. I've been watching the previous movies and the TV features on the series. Right now, in fact, I'm watching the Larry King special on the movie.

So, I think I'll wait a few weeks. Allow the crowds to thin, duck into a sparsely attended showing (probably a matinee), and savor every moment by myself without distractions. For me, I think, that will be the proper ending to the Harry Potter events. After all, it's not as if I don't know how Harry's saga is resolved.

Accessible yoga practice

If you've tried yoga, you find that it works for you, and you want more poses and options that the yoga section of Wii Fit Plus can't deliver, then you have to consider some options.

For those who aren't challenged by disability and mobility issues, that may mean finding a yoga class that suits you. Having an experienced yogi and supportive class environment provide instruction and feedback is very beneficial and motivating. Visit classes and speak with instructors to find the program that best fits your needs, personality and budget!

Those who don't have the physical ability, time, or money to attend classes regularly need other options. Yoga DVDs can be a good choice to expand your yoga knowledge and practice. You won't get feedback but DVD instruction will teach and demonstrate the poses and flows. Just be careful not to overdo!

When searching for yoga options for my Wii, I discovered that there were only two -- Yoga for Wii and New U Yoga and Pilates. I read the reviews online, particularly at Amazon.com, and the choice became clear. New U was the way to go!

Some of the reviews mentioned that New U may be too challenging for those with absolutely no or very little yoga experience. I believe that's absolutely true. The pace is a bit faster than I would have expected on the Beginner setting and I would have been frustrated if I hadn't spent a few months with Wii Fit Plus yoga. Fit Plus yoga is an excellent introduction; New U is the logical next step if you want and need more.

I've been using the program for about 6 weeks and am delighted with its flexibility and customization. The program allows you to choose one of many goals such as flexibility, back problems, weight loss, tummy toning, lower body fitness, stress relief, and even post-natal exercise. Once you choose a goal, the program creates a yoga workout for you. The workouts are comprised of 10-12 poses and flows and take 30-40 minutes to complete.

You choose your instructor from three real people/profiles and a setting. The graphics aren't the best but, hey, you can't have everything! And then you begin your class. Each pose or flow offers a demonstration/instruction that you can go over as often as you want until you think you have it. Obviously, the first time you do your class, you will need instruction on each of the poses.

The game monitors and rates how well you do each pose, awarding statues and medals for a job well-done. It keeps track of your progress, calories burned, repetitions completed, and mastery. If you don't have time or energy to do a full class, there is a quick class option that reduces the number of exercises and the length to about 20 minutes.

And once you've had instruction and practiced poses, you are able to create a customized class of your own! I LOVE this feature! The trick with this is to try out as many different poses and exercises as you can in the first few weeks by changing your goal frequently so that the program unlocks new poses for you to try, use and choose from when you want to create your own class.

For example, I have changed my goal from toning and flexibility to weight loss to tummy toning to lower body work in just the first three weeks. Every time you change your goal, the program creates a new class for you. Some of the exercises will be the same but you will get many new, goal-specific poses, too. Practice and do the exercises you can. That way, the system will unlock them and they will be available for you to include when creating your very own, personalized custom class.

This is especially important for those of us with disabilities. There are many exercises/poses (even basic ones)  that I simply cannot do no matter how I try to modify them or compensate. For example, I can't do Downward Dog; I can't do Dog Tilt; I can't do Floor Bridge. These aren't even advanced poses but my physical limitations make them impossible for me. I would have been discouraged IF there weren't about 20 (so far!) that I CAN do with modifications. I use these to create a workout/class that suits me, my goals, my abilities, and my disabilities.

Wii Fit Plus yoga encourages you to use something for support, if necessary. I do -- I use my quad cane. By making sure my balance is stable and using my quad cane for support, I can hold many of those "one-legged" poses such as Tree, Willow, and Shiva Twist for 20 seconds. Yay! Trying, achieving, and succeeding provide such a great morale boost!

Some basic things to consider: ALWAYS consult with your doctor and physical therapists regarding exercise and goals. I am blessed with an internist who takes the time to thoroughly discuss and explain issues so she's the doctor I consult, not my specialists. If you are doing physical therapy, have your therapist take a look at the games and make recommendations. Some PT practices and departments are actually using the Wii for patient rehab so they should be familiar with it! If they're not, show them the programs so they can see what you're doing. I had my OT watch my movements while I played the games and offer corrections/modifications.

Above all, listen to your body and mind the feedback that the game gives you! The Wii balance board and the Wii remote are monitoring your movements. Haha, it's almost creepy how the program KNOWS when I'm feeling poorly and am pushing myself to exercise. I see my muscles trembling on the screen. My balance is rubbish. The game trainer is asking me what happened? My scores are low. Major fail -- I don't like it, so I stop, rest, and try again the next day. And that's the beauty of these games.

One more thing: If you find that the program doesn't seem to be recording your movements very accurately, experiment with some adjustments. I moved my sensor bar to the top of the TV and in front of the area where I exercise. It made a big difference! Also, check the sensitivity setting on the Wii itself. In the main Wii screen, go to the set-up section where you can reset/adjust the motion sensitivity. That helped, as well. And in the same section, don't forget to change the location of the sensor bar if you do move it!

Fresh batteries in the balance board are important, as well. To save money, I bought rechargeable batteries. They work great! I have two sets of four -- one set in the balance board and the other charging. I install freshly charged batteries after every other workout to ensure accurate performance.

Yoga: It's not just for contortionists!

I never pictured myself as the "yoga type." Fair or not, I did have pre-conceived notions of people who take up yoga and are enthusiasts. In my mind, they are already fit and limber and see yoga as an extension of their earthy and earth-friendly lifestyle. Plus, yoga would be a natural complement to their philosophy/spirituality or a desired way of finding spirituality and balance. None of this describes me.

As I began to explore Wii Fit Plus, I glanced at the yoga section with an attitude of "oh no, I don't think so." That's probably to be expected, though, as I was coming off another surgery and period of rehab. I stayed with the balance games for a while -- my balance is really bad -- and ventured into some of the aerobics and strength exercises.

But I recalled the words of one of my orthopedic surgeons who said that 80 percent of my exercise should involve gentle stretching. Not weights, no fancy machines, just gentle stretching exercises. He said that stretching will tone your muscles slowly. You have to commit to doing the exercises every day. It's low impact and has a low risk of injury if you progress gradually. I took a look at some of the demonstrations in the Wii Fit Plus yoga section with this in mind.

And the first few weren't intimidating. There was no crawling around on the floor or twisting myself into unnatural shapes. I could do this! First on tap, after deep breathing, was the Half-Moon pose. I watched the demonstration again. I followed along. I felt my sides stretch. I concentrated on keeping my balance. (The balance board even detects muscle twitches, much to my dismay.) I did a credible job. The cartoon trainer was kind, encouraging, and non-judgmental.

But the best part was that no one could see me! Not the cartoon dude and certainly not a classful of lithe and flexible 20-somethings. My dogs looked at me quizzically but that's nothing new, haha. Yet, the balance board and Wii Fit Plus program recorded my movement and gave me the feedback that's a must for an absolute beginner.

Still, I wondered -- how valid is this yoga? Is it the real thing or contrived? I did what any other 21st Century connected person would do. I Googled. And I found reviews from real yogis who said it's quite good. They pointed out a few issues with a few of the poses but, overall, they thought that Wii Fit Plus yoga did a good job. I was encouraged.

The program is WONDERFUL in introducing one to yoga. It demystifies the practice. It teaches you slowly, offers encouragement, rates your performance kindly, and will politely tell you when you've attempted a pose that you're not ready to handle. In fact, you can't unlock more difficult poses until you've practiced the easier ones successfully.

I found myself turning more and more to yoga and doing the fun little games less and less. I put together my own workout that was heavy on yoga and included just a few strengthening exercises. There are poses that I simply can't do because of my physical deficits but I'm delighted by what I CAN do and focus on that. I try new poses but am realistic.

Wii Fit Plus yoga is a great introduction to the practice and the benefits are tangible. I've discovered that the breathing and stretching exercises are helping the abdominal pain I experience with Crohn's Disease. After several weeks, I noticed that my arms and abdomen are more toned. I've seen an improvement in my balance, as well.

Wii Fit Plus yoga can take you so far but if you want to make yoga your primary form of exercise then, once you learn the basics, there is another game that will better accommodate your needs. More on that later!

Have any of you tried yoga or do you have a favorite exercise regimen?

Finding that exercise balance

I guess that I must confess here that I'm a bit of a girly-girl. I don't like to get messy and I don't like to sweat. I've never trained for a sport but I have enjoyed playing them. I was an avid tennis player and was really quite good at it but I made sure I looked cute doing it, haha. I've never been rail thin and I've never been obese and I've never had to work hard to get in shape. My moderately active lifestyle kept everything in check and I've maintained what I guess you'd call an "athletic" build.

But with Lupus, Crohn's, aging, and metabolism changes, fitness has been a challenge for me in the past several years. At times, I've lost weight without trying. When I've had to take Prednisone to settle down flares, I gained weight. That strength-sapping Lupus fatigue has been difficult to manage. I've read plenty of articles that say exercise helps the fatigue but I think there's a caveat there -- it only helps if you do the RIGHT AMOUNT and that can be difficult to discern.

I've had three shoulder surgeries in the past 2 years. Inflammation in my shoulders has caused torn tendons and cartilage/bone changes that needed to be corrected. With any sort of orthopedic surgery comes physical therapy, of course. The difficulty that my physical and occupational therapists encountered was finding the balance between doing too much and not doing enough.

When my therapy ended, I decided to keep trying to strengthen my body in hopes it would improve my mobility, pain levels, flexibility, and energy. I'm an intelligent person. I know my body, I understand my diseases, and I really thought I could figure out that balance between overdoing and not doing enough. So, I joined a gym. My Humana Medicare plan even paid for it!

I went 2-3 times per week and did about a 30-minute workout that included cardio and light weights. I really didn't feel that it was too much. But after two weeks, the dreaded fatigue hit me. Still, I pushed on. After three weeks, my right shoulder became horribly painful, appeared deformed, and was swollen to three times its size. (Correcting that problem was shoulder surgery No. 3.) I had to listen to my body; the gym was not a good idea.

So, after that surgery, and while I had both physical and occupational therapists still coming to the house for my rehab, I started to research alternatives. Whatever exercise program I did had to be done at home, had to be flexible enough to accommodate people with disabilities, and yet had to be interesting and rewarding enough to maintain my interest. One obvious choice emerged -- Wii Fit Plus.

In my never-ending quest to maintain a good quality of life but also to keep my bills at a minimum, I bought myself a Wii console. I found one at Kmart and put it on layaway (Yay for Kmart layaway!) -- in a few months, I brought it home, hooked it up, installed Netflix, and canceled satellite TV. In no time, the Wii became my entertainment center. I could play some of the sports games, even with my swollen joints and weak hands!

But I still wasn't ready to spend much money on pricey game equipment unless I was sure I could use it. So, I bought an inexpensive balance board on Ebay and a copy of the original Wii Fit software used for $3.50. And I had my physical and occupational therapists go over the games and activities with me to set up a reasonable workout that would help but not hurt. It went well. So well that I bought the Wii Fit Plus game, as well, to have more games and options.

I still have to be careful. Repetitive movements, no matter how seemingly simple, can and have hurt me. I have to quash my competitive nature of wanting to try just one more harder exercise or to beat my high score. But it's brilliant to have a fun program for balance and movement that actually provides feedback and statistics in your own home.

And thanks to Wii Fit Plus, I'm actually trying something I NEVER thought I'd be able to do -- Yoga. More on that tomorrow. ;)

Welcome to Auto-immusings!

This blog is all about living boldly, bravely, thoughtfully, and sensibly in the context of managing autoimmune diseases. Personally, I'm dealing with two of them -- Systemic Lupus Erythematosus (otherwise known as SLE or Lupus) and Crohn's Disease. Sure, it's a struggle handling the symptoms, medications, medical care, and the like but the biggest struggle is to remain ME in the face of it all. And that's why this blog was born.

In my life before Lupus and Crohn's, I was a mum, a teacher, a writer, a traveler, a foodie, a gardener, an armchair philosopher, you get the idea. I am still all of these things but in different ways and contexts. I've had to adjust, compensate, re-invent, and, above all, LEARN!  The teacher in me wants to share what I've learned; the mum in me wants to nurture and problem-solve; and the seeker wants to learn from and discuss with others.

I have eclectic interests and this blog will reflect that. There will be posts on health care, exercise, fabulous products, current events and issues, food and recipes, shopping, and anything else that strikes my fancy.  Or the fancy of the gentle readers I hope will read and respond.

If you're interested in living bravely, healthy, and thoughtfully, this blog is for you, whether you are affected by autoimmune diseases or not. These interesting times in which we live require creativity, resilience, and resourcefulness no matter what challenges you might face. And we all have challenges, don't we? :)