Wednesday, July 30, 2008
As you'll see on the right side of the page, I've added a new scroll feature called "Ways to Lighten Your Load with Lupus." Here, I've listed a few of the ways that I've found to make my life with a chronic illness just a little bit easier. It doesn't always take much - in fact, just purchasing a simple letter opener one year eliminated the agony I used to experience each time I tried to get my swollen, arthritic fingers underneath the envelope flaps of the letters that came in the daily mail. I can't tell you how happy I was when that opener arrived in my stocking one year (from Santa Johnny.) It made all the difference - as did the other things on my list.
Can you think of any other ways to save your joints? Let me know and I'll add them to the scroll. And keep checking back for new ways to save a little time, a lot of energy, and maybe even a little suffering.
Here's a highlight from my list as it "scrolls" today:
Order groceries online - I'm telling you - this changed my life. I used to get downright ill when I had to go to the grocery store to fill up on weekly groceries. The combination of walking around, pushing the cart, grabbing and pulling things down from the shelves was enough to make me want (and need) to sleep for hours immediately upon returning home. Forget about putting the groceries away. I was absolutely spent, and usually in a lot of pain after the ordeal. I looked into the delivery option, and while there is a nominal fee for delivery (I pay about $6) , the service is worth every penny! You can order your groceries online, in the wee hours of the night, in your pajamas if you want to, specify when they should be delivered, and then watch as some nice delivery person hauls in every last one of those heavy, awkward bags right into your kitchen. It is the most convenient service for someone whose body is aching. I highly recommend it. A regional (albeit expanding) service I have come to love: Peapod
To find a grocery delivery service in your area, check out this site, which lists over 10 places nationwide for grocery delivery.
Tuesday, July 29, 2008
I went to open the mail yesterday, and there was a letter from my perinatal doctor's office. I figured it was a bill for one of the many outstanding balances (small, may they be) that my insurance company won't cover, but much to my surprise, it was a prescription refill for one of my medications that will be running out soon. How thoughtful! How considerate! How convenient!
If only every doctor's office was willing to monitor the expiration on my prescriptions. While I hadn't yet noticed that I'm almost out of that particular drug (I have been focused on other things lately - like this big alien growing in my tummy), I do have another sonogram scheduled before I run out. I'd like to claim that I would have realized my need for renewal before the appointment, made a note to myself to ask about renewing it, and then remembered to ask during the actual visit - but that's a lot of contingencies.
In reality, I probably would have forgotten. Then, I would have been forced to call in after my appointment, talked to the receptionist who would then relay my request to the doctor. Then I'd have to ask them to fax the prescription to my pharmacy, and then I'd have to follow up with the pharmacy to make sure they received it. And if they were like some of my other doctor's offices - there would have been a $25 fee for asking for a prescription outside of an appointment.
But I don't have to do any of that - because it arrived in the mail yesterday. Thank you, Perinatal Associates of Northern Virginia, for staying on top of my pregnancy. You made my day!
Monday, July 28, 2008
After failing to find an appropriate beauty product on the market that could sufficiently mask the dreaded Lupus rash and provide adequate protection from the sun, she took it upon herself to come up with a line of makeup that would do the job. After spending almost three years working with lab experts to perfect her product, she's developed something that she knows firsthand will help cover up unsightly (yet unpreventable) skin conditions. She even donates a portion of the proceeds to Lupus and skin disorder research.
Kudos to Nicole for taking matters into her own hands - check out her website where you can read more about her story and her products. For even more on Nicole, click here!
Friday, July 25, 2008
When I was eight years old, doctors confirmed what I had known for a few years at that point - that I have absolutely no sense of smell. That's right, this schnoz of mine is a big ole' dud, and I underwent extensive medical testing to prove it. Sure, I can still breathe through it, catch colds, and sneeze, but the olfactory nerves are deader than ever.
The official name for a lack of smell is anosmia, which makes me an official anosmiac. Researchers actually differentiate between someone who has lost their sense of smell (due to trauma or disease) and someone like me, who seems to have been born without it. I feel kind of lucky to be in this second category - while I can't smell a batch of freshly baked cookies or the wonderful aroma of a big bouquet of flowers, I don't have any idea what I'm missing. It doesn't really faze me anymore, and when I see people rearing back in disgust from a bad whiff of whatever, I figure I don't have it so bad.
Only one time in my life have I felt held back by my lack of sense, and that was when doctors told me that my childhood plans of becoming the world's greatest veterinarian would probably not come to fruition. Ever since I was a wee one, I had planned on becoming a vet - I loved animals, didn't mind the ick and gore of the medical bit, and even envisioned myself moving from the small town of Greencastle, Indiana to the big city (maybe even Indianapolis!) in order to save the big-time city pets of the world.
As it was explained to me, because our furry little friends can't tell us exactly what's wrong, a vet must heavily rely on indicators such as smell to determine what it is that is ailing Fido or Fifi. I have no idea if I would get the same kind of answer today, but at the time, the doctors did a sufficient job of convincing me that I needed to find another career choice. I was pretty bummed at the time (as upset as an eight-year old can get about a change in careers), but I accepted my fate and decided that this change would give me the opportunity to find another more equally fulfilling career that I was truly meant to pursue.
Fast forward more than 20 years. Diagnosed with Lupus, I was faced with the challenge of mentally adjusting and physically adapting to the limitations of the disease, which, for me, necessitated another shift (make that downshift) in career. As conflicted as I was about making the decision to slow down, stop working, and start taking care of myself, I was reminded of that eight-year old years ago. She certainly made the most of the opportunity to reinvent herself into something different then; wasn't I capable of rising to the challenge again?
Today, I'm able to embrace the idea of continually charting a new course for myself. It's fun to have tried my hand at this writing thing over the past year or two, and even more enjoyable now that I'm blogging on regular basis. Six months ago, I swore that I'd never take up that "blog" thing - it just wasn't my deal. But here I am, blogging my little heart out, and enjoying every minute of it.
There I go, reinventing myself again.
Wednesday, July 23, 2008
Chapter Overview: Making the choice to live well may be difficult, so you must look within yourself to find out how to make your strengths work to your advantage.
During the course of my first two and a half years with Lupus, I made more than a dozen trips to the hospital for various out-patient surgeries, emergency room visits, and invasive procedures and tests. Never once had I been held overnight, but even still, I considered myself pretty comfortable with the whole hospital routine in general. At the end of this period, I became very ill, and my rheumatologist thought it best to admit me to the hospital, due to the possibility of internal bleeding and other alarming symptoms for which he could find no explanation. Although he told me that I was being admitted, he didn’t mention the concept of being held overnight. Therefore, my expectations were the same as always: to be seen, evaluated, and released over the course of the same day.
When my doctor told me later that evening over the phone, that no, I would in fact be staying overnight, I was in disbelief. As I hung up the phone in my hospital room, I burst out into tears. I knew I was sick, and I wanted answers, but this overnight business wasn’t part of my plan. I hadn’t expected nor had I chosen to stay overnight, and yet there I was, forced into a situation over which I had no control. I felt duped, even trapped, not by my doctor, but by the disease itself. Lupus had finally ascertained control of the situation, and I hadn’t prepared for that to happen. I’d always been able to rise beyond her wrath and regain command of the situation, even if in my own twisted, optimistic mind. But not this time. I probably should have been more nervous about was wrong with my body (since I ended up being hospitalized for seven days), but the thing I remember the most about that night was the utter despair I felt when I saw my deliberate, purposeful, well-planned life falling apart before my eyes.
Never before had I felt such vulnerability or helplessness. The tears that came throughout that evening were filled with pain, resentment, and disappointment that I didn’t even know I had. The feeling of failure was overwhelming, as if I could feel the last strand of control slipping from my fingers into the hands of the disease. I was powerless, and it was the most terrible, disparaging feeling I’d ever experienced. My life had become utterly unmanageable, and I could no longer separate my life from my disease. They had become one in the same, no longer two separate compartments of my mind. Lupus was out of control, and so was
Loosening the Reigns
Understandably, we are resistant and reluctant to change, especially when we’re not the ones initiating it. No one enjoys relinquishing power or having their life’s agenda rewritten without their consent, including you and me. Having and maintaining control over our lives gives us confidence, stability, and peace of mind. We feel good when we assert ourselves, content and settled when life follows the path we intend. But when life is forced upon us, without our consent or expectation, as our chronic illness has been, we panic. We rush to defend ourselves against the intrusion, fighting to preserve the comfort and control we’ve always known. Not only are we seizing the past, we’re grasping at the future. We believe our plan is the only one that will lead us to our desired destination, and anything else is a ruse. If we don’t push, kick and scream against the unexpected tangents of life, life itself is liable to pass us by completely.
The harder I push, the sicker I get
The sicker I get, the less I resemble myself
The less I resemble myself, the harder I push to try and regain some semblance of who I used to be.
Thinking you can beat this debilitating disease without compromising one iota of your life is what perpetuates the cycle, but two things can end it: your body giving out or you giving up control. Unfortunately, the former can and will happen, although we don’t like to admit that it’s possible. We think we’re invincible, but in fact, the body can only tolerate so much suffering. If pushed too far for too long, our bodily functions will slowly, but assuredly begin to fail. It’s only a matter of time. However, this result never has to be considered, if you’re able to relinquish the control you’ve been holding onto so desperately. In doing so, you are instantly relieved of the burden to force order, method and purpose into your life. It releases you from your futile attempts to possess a power that, perhaps, isn’t yours for the taking. It prevents you from killing yourself trying to keep to a path that isn’t necessarily set in stone. Where you’ve been merely struggling to survive, you can, at once, begin to thrive.
Tuesday, July 22, 2008
Newswise — Farm-raised tilapia, one of the most highly consumed fish in America, has very low levels of beneficial omega-3 fatty acids and, perhaps worse, very high levels of omega-6 fatty acids, according to new research from Wake Forest University School of Medicine.
The researchers say the combination could be a potentially dangerous food source for some patients with heart disease, arthritis, asthma and other allergic and auto-immune diseases that are particularly vulnerable to an “exaggerated inflammatory response.” Inflammation is known to cause damage to blood vessels, the heart, lung and joint tissues, skin, and the digestive tract.
“In the United States, tilapia has shown the biggest gains in popularity among seafood, and this trend is expected to continue as consumption is projected to increase from 1.5 million tons in 2003 to 2.5 million tons by 2010,” write the Wake Forest researchers in an article published this month in the Journal of the American Dietetic Association.
They say their research revealed that farm-raised tilapia, as well as farmed catfish, “have several fatty acid characteristics that would generally be considered by the scientific community as detrimental.” Tilapia has higher levels of potentially detrimental long-chain omega-6 fatty acids than 80-percent-lean hamburger, doughnuts and even pork bacon, the article says.
“For individuals who are eating fish as a method to control inflammatory diseases such as heart disease, it is clear from these numbers that tilapia is not a good choice,” the article says. “All other nutritional content aside, the inflammatory potential of hamburger and pork bacon is lower
than the average serving of farmed tilapia.”
(Curious what Sockeye salmon looks like?
This guy seems eager to show us. What a catch!)
For the complete story on tilapia, check out the Newswise Medical News link. And for more information on how eating fish can help reduce inflammation, check out the Arthritis Today article.
Friday, July 18, 2008
Shortly after I started experiencing joint pain and swelling in my hands due to Lupus (which was practically right away), I came up with the phrase "piggy" to describe any digit that was swollen, tender, or aching. My family came to rely on my nomenclature - asking frequently if there were any piggies in the house or some other endearing phrase to find out how I was feeling on a daily basis. While I haven't had any sign of a piggy in over a year, I had one last night. My left pointer finger was the culprit this time, and while I racked my brain for a reason how I might have strained, bumped, or bruised it, I knew full well what the cause was.
I've been running a mile a minute lately - trying to wrap up a few projects around the house, getting ready for my parents to visit this weekend, and doing my best to manage the anxiety that's beginning to set in due to Bun's pending arrival. I can hardly contain the nervous, excitable energy I have, but I need to start doing a better job of it. I've been remiss in not getting a full 9-10 hours of sleep at night (because I'm too busy "doing"), and I've shaved off 15-30 minutes from my nap for the past couple of days, just because I feel like I don't need it. While my mind feels like it might not, my body (and in particular my "piggies") are saying yes we do!
Another cause of my anxiousness might have been the recent computer problem I experienced: my hard drive crashed on my laptop last week, and while I have earlier versions of my completed book backed up, I didn't have a copy of Chapters 7 and 8 in their finished form. I know, I know. You don't have to tell me now how crazy I've been for not backing up. But thankfully, the genius of the computer guy I use came through, and he was able to recover almost all of the data - except for Chapter 1. I consider myself lucky, because the first chapter was saved and backed up ages ago.
I'm also thankful that when I woke up this morning, my piggy was gone. Let's hope that I've learned my lesson on all accounts: slow down, back up, and rest. Easier said than done!
Wednesday, July 16, 2008
Here you go!
Tuesday, July 15, 2008
Monday, July 14, 2008
Now for those of you who aren't familiar with a 24-hour urine test - it's pretty self-explanatory. You're issued a huge, bright orange jug from your doctor (which seems to have grown even larger and brighter over the 7 years I've been doing these tests), you take it home, and every time you have to go during a 24 hour period, you tinkle into the jug. If you go to work, you have to take it to work. If you go out for the evening, you have to take it with it. It's quite a trip toting around such a jug...but one of my girlfriends from Lupus group taught me to just cinch it up (tightly, of course) in a cute backpack and carry it around like it's just another bag of "stuff". As long as I don't jostle it around, no one ever knows the difference!
One small note - collecting one's urine into the jug is not very "big belly friendly", but the doctors have always included a handy-dandy, bedpan-like thing to assist in collecting your samples. For years, I swore I'd never use one of those things - but then, I was always agile enough to collect my own samples, thank you very much. Alas, I also used to be able to see my knees.
Ironically, my post today was going to be about the importance of staying hydrated, based upon some helpful hints I ran across in the latest issue of the Lupus Now magazine. I'll have to touch on that tomorrow, though. Right now, you'll have to excuse me. I need to go powder my nose.
Friday, July 11, 2008
Founders Ron Gutman and Dave Kashen started the company based on a vision for helping to solve the country’s health crisis and a passion for helping people improve their well-being. From the obesity epidemic to the rise of inactivity to the high levels of stress found across America, our country is not exactly in good shape. Most of us know at least a few things we could do to improve our well-being, but haven’t quite gotten around to doing them yet. Both Ron and Dave know from personal experience the incredible impact that becoming more active and eating better can have on people’s lives (yea, they’re still working on the relaxation part, but 2 out of 3 is a good start). Turns out making changes is HARD. So, they gathered a group of some of the brightest minds across Stanford’s graduate schools and asked one simple question: “How do we help people improve their own lives?”
Thursday, July 10, 2008
Wednesday, July 9, 2008
As seen on The Kim Komando Show - Video of the Day:
In 1969, two friends, John Rendall and Ace Berg, purchased a lion. At the time, Christian the lion was a 35-pound cub. He had been born in a zoo. The friends raised Christian in their London home. All three hung out in a friend’s furniture shop on the weekends.
Within a year, Christian had grown to 185 lbs. Rendall and Berg realized they couldn’t keep him much longer. But they didn’t know what to do with him. A chance encounter changed that. Two actors from the film Born Free walked into the furniture store.
The actors recommended a conservationist, George Adamson, living in Kenya. Christian was soon in Africa. There he was rehabilitated and released into the wild.
In 1974, Rendall and Berg decided to visit Christian one last time. He was now a wild animal. Adamson told them it was doubtful that Christian could be found. No one had seen him in nine months.
The two flew to Kenya, anyway. On the day they landed, Christian appeared outside Adamson’s camp. Somehow, he knew. He waited outside the camp until Rendall and Berg arrived.
This video was taken during their reunion with Christian. What a story! What a video!