Wednesday, September 29, 2010
Not only did my joints like the freshness of those drinks, but they seemed to have a huge effect on my energy level! I couldn't believe the difference. We truly enjoyed our fresh and fruity drinks, but having downed a good 500 smoothies or so, we simply burned out after a couple of years.
I'm not sure what has recently inspired us, but after almost a 4- year hiatus, we're back on our smoothie kick! We've been pulling out the blender and whipping up a batch every other morning or so. I'd forgotten how refreshing they can be, and just how much energy they seem to give me. I think it's a noticeable difference from one day to the next...which is fascinating. Like one little fruity concoction can make that big of an impact.
So if you're looking for a jump start, and your morning bagel is weighing you down, why not consider making a smoothie? I'm not much a fast-food junkie, but I just recently tried the smoothies at McDonald's (hold the yogurt), and it was pretty good. No Gorman masterpiece, of course...but definitely worth trying if you're looking for an introduction into the world of smoothies. (And if there's a Smoothie King near you - DEFINITELY check it out. Their concoctions are meals in and of themselves!)
Monday, September 27, 2010
I'll cut myself a little slack by saying that it's tough enough to find time to fill prescriptions and retrieve them from the pharmacy. Adding a laundry list of OTC's just makes the list of errands that much longer (and more costly). But I need to remember just how important those OTC's can be.
Here's a short list of my current OTC's and the impact they've had:
Calcium - This one, of course, is a no brainer. With all of the prednisone I've taken over the years, I have no choice but to keep pushing the calcium. I might have mentioned in a previous post that about four years ago, I kept "forgetting" to pick up my calcium supplements. They were (and are) big honking pills that seemed pretty expensive to me, and I decided for a spell of a month or so that I could drag my feet on picking up another bottle. When my doctor asked about the calcium, I begrudgingly told him that I hadn't taken any in awhile. He was not happy. He ordered a DEXA scan immediately, and not surprisingly, my bone density had fallen. I learned my lesson - and vowed never to skip those horse pills again. And you know - I've known many women in their 60's and 70's who struggle to get around - and all of them swear that if they'd taken calcium, their bouts with osteoporosis wouldn't be slowing them down today. I wholeheartedly agree.
Pre Natal Vitamins - There are a ton of facts available online about the importance of pre-natals, but sometimes it's still tough to convince yourself that you need to take them, alongside all of the other pills you pop. But without a doubt, the folic acid, the vitamin D, the added iron and calcium all make a huge difference to both mother and baby. Just look at the facts, according to WebMD:
*Folic acid can reduce your risk of having a baby with a serious birth defect of the brain and spinal cord.
*Calcium during pregnancy can prevent a new mother from losing her own bone density, as the foetus uses the mineral for bone growth.
*Iron helps both the mother and baby's blood carry oxygen.
You have to admit, that all sounds pretty essential. No arguments from this corner.
Iron - My earlier posts about iron and the effects of iron deficiency should be enough of a reminder, so I won't beat a dead horse. I'll just say this - when I was severely anemic (during both of my pregnancies and back in 2004 when I had a killer bout of pancreatitis), I thought I was going to die. My body was completely void of energy, my vision was blurry, I couldn't stand for long periods of time (by long, I mean, like 5 minutes), I had the urge to sleep around the clock, I had no appetite, and I felt lethargic, depleted, and drained all the time. It was awful! Within days of starting the iron (and in the case of my pancreatitis episode, within hours of my blood transfusions), I felt like wonder woman. So - sign me up - I'm all over the little red pill.
Baby aspirin - This one, I've never had a huge hang up with...I suppose the testimonies of two of my girlfriends from lupus group convinced me that I shouldn't mess around or risk skipping the aspirin. Both women suffered multiple miscarriages, prior to being diagnosed with lupus. Once it was discovered (or suspected) that they had lupus, they started a baby aspirin a day, and both went on to have multiple successful pregnancies. Gone were the miscarriages - apparently, thanks to those little 81 milligrams of aspirin. And they're such a cute little pill - cheap and easy to pick up at any store - who would want to take the risk?
To this OTC list, I'm even going to throw in cold medicine, Tylenol, and other pain relievers or fever reducers. I mean, what an impact these little drugs can have! During this pregnancy, my doctors have recommended that I by-pass any and all cold medicine, and use only regular strength Tylenol (candy, in my opinion), when necessary. And have I ever missed my old standbys! The two colds I've had lasted way too long - much longer than if I could have nipped them in the bud with a little Tylenol Cold or some Dimetapp. And Extra Strength Tylenol is the only way to go...but I'll have to continue to hold off for a few more weeks.
So here's to the OTC's of the world - I'll never underestimate you again. I promise.
Friday, September 24, 2010
Even if you're not considering disability at the current time, perhaps you have a question regarding your options, should you find yourself in a situation where your work is no longer compatible with your disease. Knowing when and how to proceed through the confusing world of filing for disability might take a load off your mind. I remember my sister (formerly in the insurance industry) poring over my company's insurance policy and outlining my options for disability, should my disease continue to impede my ability to work. Thankfully, I never had to file, but it sure did make me feel better to know what was in store if I did!
Click here to submit your questions, due by Thursday, September 30th. And for more information about Ms. Abrams or the 15 Question series, check out the Lupus Foundation's website.
Wednesday, September 22, 2010
It seems that most lupus patients I meet are currently taking or have taken some dose of plaquenil, me included. You can check out my previous prescriptions 101 post about plaquenil for more information about my experience with the drug.
Currently, plaquenil is working just fine for me - no side-effects, no flares...so all is well. In the past, however, I have had periods where the drug wasn't sufficient, and I also experienced that rare (very rare) side effect involving retinal changes that prompted my opthamologist to recommend that I suspend using the drug for a period of time. My eyes returned to normal, I stayed off of the drug for almost 3 years, and I haven't had any trouble since going back on the drug over three years ago. Fingers crossed - plaquenil is again in my good graces!
Since many of us have experience with the drug, I thought I'd post the poll at the right to see just how the drug measures up. Take a moment to answer the questions at the right - and see the company you're keeping when it comes to plaquenil!
Monday, September 20, 2010
Good news is that all is well in KitKat land. I was able to skip my NST (non-stress test) last week because the sonographer did a bio-physical on the big K during the ultrasound...and with a perfect score, there was no need for extra monitoring. Johnny and I were in and out in less than an hour and a half. We were thrilled!!! The PAC 's seem to have subsided, baby is measuring at more than 5 pounds, and the sonographer thinks Kit Kat will debut much larger than Deirdre did at birth. She sported a lovely weight of 6 lbs, 4 ounces. Mom's not too sure about the ole' "bigger is better" thing right now...but, unfortunately, I don't think I'm really in charge in that area.
I have another appointment this week, and I'll be sure to keep you updated. More pictures to come of the baby in the coming weeks (there aren't many left, eh?), and shots of Deirdre in her big girl room are on the horizon. Her wallpaper goes up next week - we're so excited! (And I promise - she's excited, too - it's not just mom.)
Friday, September 17, 2010
She was explaining how difficult it can be to a) get dressed for the occasion (a painful, grueling task in and of itself), b) make the trip there, c) arrive with a smile on your face, and d) attempt to sit upright during a meal when it's painful to chew, you're not hungry, and you feel absolutely awful. All of that, she explained, was taxing, yes. But the most exhausting part for her? The kibitzing, the chitchatting, and the catching up. She said simply carrying on a conversation - attempting to follow what others were saying, processing their comments, and then trying to chime in with her own two cents - was beyond her capabilities.
In 10 years with lupus, I've never heard anyone say that before, and yet I couldn't agree more!
I remember so many evenings out with friends where I would sit completely still, not uttering a word, in fear that I would zap my energy too early on in the evening and have to leave before making what I felt was a proper attempt to socialize. As I struggled to keep my eyes open, much less my ears tuned into the conversation, I would try to smile in agreement every once in awhile, just to convince myself that I was actually taking part in the evening. But the idea of actually responding to a question or participating in the conversation was out of the question. It took every ounce of energy I had just to be there - formulating a sentence was not an option.
What an awful feeling it is not to be able to count on our bodies to go the distance...but how ridiculous that we ask our bodies to perform when they're simply incapable of doing so in the first place. I personally had no business being out and about when I was sick. I belonged in bed, resting, and recouping - not trying to prove to myself or anyone else that lupus wasn't going to keep me down.
And, thankfully, after years of living with lupus, I've learned that it's okay to stay home. It's not about logging social hours, or pushing your body to do what you think it should be able to do - it's about taking care of yourself today so that you can be around tomorrow.
I now understand that in turning down an invitation to dinner, I'm not letting lupus win - I'm just acting responsibly. I'm choosing to live well - and I certainly sound smarter doing that than I do sitting around a table not saying a single thing. How witty can silence be, you know?
Wednesday, September 15, 2010
As lupites, it's as though we're wired to push through, to never take no for an answer, and to assume that if an obstacle exists, it's there to be overcome. It's like it's part of our makeup...and based upon the staggering number of people I meet who have a chronic illness and share these determined, driven traits, I think I'm right.
Consider my most recent adventures in caring for Deirdre:
From the day Deirdre was born, I've had some sort of help in the afternoons so that I could rest - not only for a nap, but also for an hour or two break from babydom. For the first week or two of her little life, my mom and dad were here to help. After that, we had babysitter Leticia to come and help every afternoon for 4 hours. As Deirdre got older, and I didn't need a full afternoon of help, I hired wonderful neighbor girls to come and play with Deirdre from 4-6pm for several days a week. Deirdre and I were able to coordinate our naps for the most part, so by the time the babysitter arrived, I was rested, and had a couple of hours to myself. I took that time to do book stuff, blog, respond to emails, or catch up on household bills, mail, etc. For the most part, those hours were spent sitting somewhere in front of a computer. Yes - my mind was active, but my body...not so much.
And has this routine kept me healthy? You bet. Have I felt exhausted or overextended since being pregnant with an almost-two year old running around? Not really. Mostly because my body knew a break was coming during the week...and it enjoyed every moment of it.
So tell me what I must have been thinking when school started this past month and my summer, afternoon babysitter was no longer available due to her after-school activities (which she told me months ago.) Did I hire someone to take her place? No. Did I start calling around to see if any other girls were interested in coming over for a few hours a week? No.
I just, kind of, dealt with it.
I guess I assumed that I could just push through until the baby arrived - that I didn't really need that break - and that eventually I would hire a consistent, full-time person to help once KitKat did arrive, and then I could get back into my routine.
But you know what? Chasing after Deirdre (minus, I know, our naps) every day of the week is exhausting. My body wants that two hour afternoon break - it needs that two hour break - and during the past few weeks that I've been on my own - I've felt it. I'm pooped - and I finally decided to do something about it.
I made a phone call this past weekend, and help is on it's way - in the form of the great babysitter we had during last year's school year. She said she'd love to come play with Deirdre for a few hours a week - she can start this week. In fact, she was just waiting for me to call.
Of course she was. I was just too busy trying to adjust my wonder woman bracelets to pick up the phone.
Monday, September 13, 2010
Tell me -
How many people do you know that actually understand what lupus is?
How many people could tell you at least three symptoms of the disease?
(Granted they have about a gazillion to choose from.)
How many people could rattle off even one consideration (sun exposure, compromised immune system) of having lupus?
And how many people could say that they've seen, read, or heard a radio, tv or magazine ad for lupus that conveys what the disease is?
(Now, that last one is, in no way, a knock against the Ad Council, who as of late has done a fabulous job of spreading awareness about lupus through their ad campaign. But it's tough when there's so little talk of the disease in general. It's hard to rely on a few PSA's to spread the word about a disease that more than 1.5 million people nationwide (and more than 5 million worldwide) are said to have.
Now - there's no pity party to be thrown here. No one's dropped the ball, and no one is shirking responsibility. If someone isn't knowledgeable of the disease, it's certainly not their fault. In fact, I say we, as lupites, are at fault if we don't take 30 seconds to educate someone who might otherwise not know what the disease entails. I know, I know - like you need one more thing to do. But do you really think that a 30-second speech is going to slow you down, when it might possibly educate someone and inspire/encourage/motivate them to do something about what they've just learned about?
Think about it - it's not as though you need any practice in figuring out what to say.
You know the symptoms like the back of your hand - complete and utter exhaustion, arthritic pain and swelling, fevers, swollen glands, organ involvement, rashes, hair loss, mouth sores, chest pain, blood count issues, loss of appetite, etc.;
You know all too well the possible triggers of a flare- stress, sun, infection, surgery or other procedures, exhaustion, certain drugs, even the common cold, etc.
You know what you'd like others to know about the disease - that it can make it difficult to work 40 hours a week, to go a whole day without napping, to get dressed in the morning, hold a tube of toothpaste in your hand, pick up your baby, make the bed, drive a car, walk from the parking lot to the store, run an errand, bake a batch of cookies, etc., etc., etc.
And you really know that you'd like people to understand that it can be a life-threatening, life-altering disease that's chronic, that won't ever go away, that most likely will require you to be medicine-dependent for the rest of your life, and that has forced you to make changes in your life in order to accommodate the illness.
Of course, if you're up for taking 30 seconds out of your busy schedule now and again, you can also let them know that you appreciate them allowing you to tell them a little bit about the disease, encourage them to pass on the information, and assure them that no, not everyone has as mild a case of lupus as their great aunt once removed did, who never seemed to be affected by the disease at all. (You know that happens at least half the time!)
Remember, though - no complaints, no pity party - just the facts. Perhaps as though you're talking about someone else, so that when they realize that it's actually you who battles those symptoms and triggers and issues on a daily basis, they can be even more impressed that you're talking about it, and taking steps to teach others about it, too.
So get your speech ready - the next time a stranger (or even someone you know) asks about that rash, your hair loss, your fatigue, or that cane, perhaps you can say, "Have you ever heard of lupus?" And if they say, "no," that's your chance to break out your :30 spiel.
And I'll look forward catching the tail end of it as I walk by!
Friday, September 10, 2010
Take the flu, for instance - you're feeling run down, have tender or swollen glands, and feel achy all over...is it a bug, or is lupus afoot? And if you've been hitting the gym hard a few days in a row - and suddenly your joints seem sore and a little tight - did you work out too much, or is your disease acting up?
And the effects of pregnancy - fatigue, swelling, and difficulty touching your toes - certainly have similarities to lupus symptoms (as do the symptoms of postpartum, too.) However, over the last 8 months, I've concluded that the context of lupus and pregnancy symptoms are actually quite different:
1) Fatigue - Being tired is a drag, no matter what the circumstances. With pregnancy, you feel wiped out - pooped because your body is busy making a baby, and putting your legs up at the end of the day feels heavenly. With lupus, being dead dog tired is just the beginning. It's the complete exhaustion, the feeling of depletion, and the notion that you cannot take one more step or utter one more word that really sets it apart from anything else.
2) Swelling - No doubt about it - being pregnant and swollen stinks - the feet, the fingers, even the face - it can seem as though no body part is left untouched. But thankfully, there's typically little to no pain - just tightness, right? With lupus, swelling is almost always accompanied by joint pain, making it practically impossible to put any pressure on or make use of any of those swollen, painful joints. Bummer, huh?
3) Sudden weight gain - during pregnancy, you're expected to gain weight. Even if it's in all of the wrong places - people look at you and say, "for the baby's sake, have another slice of cake." Unfortunately with lupus, nobody gives you a pass for those nasty prednisone pounds. Or that terrible moon face. Thankfully, in both the case of lupus and pregnancy, the weight gain has the potential to go away...but that's a whole another topic, don't you think?
4) Immobility - When your belly takes on the appearance of a decent sized watermelon, and you find yourself hobbling and waddling around due to the imbalance, you tend to get some sympathy. At the grocery store, in restaurants, even at the post office...everyone seems to jump to help with doors, chairs, and the like when you're pregnant. With lupus, we have the disadvantage (if you can call it that) of not looking visibly disabled, so even though our joints are throbbing, and we find it difficult to put one foot in front of the other, no one knows that we could use a hand.
So I guess for the remaining couple of weeks, I should just enjoy the advantages of being pregnant, and know that once my belly returns to normal, I'll have to start fending for myself again. Of course, by then, I'll be pushing Deirdre in the stroller while carrying KitKat in a baby bjorn.
Gosh. I think I just earned myself another 6 months of sympathy.
Wednesday, September 8, 2010
Johnny and I both acknowledge that I'm going to need help with the kids - sleepless nights and running on empty all day long are not recipes for flare-free living. So, as we did when Deirdre was born, we're committed to hiring someone to come in and lend a hand. Back then, we hired a wonderful woman named Leticia for 4 hours a day (from 1-5pm)...and it worked out great! She understood just the kind of help we needed - someone to help with the baby as well as do the little things around the house that I just didn't have the energy or time to do - laundry, dishes, dinners, etc. She was respectful of my need to sleep, and definitely played a role in keeping me out of flare territory. AND she treated Deirdre like one of her own. We couldn't have asked for anything more.
But now that we'll have two, I'm not sure that half a day is going to be enough. In fact, as of today, I'm absolutely positive it's not. But it took a bit of soul searching to come to that conclusion.
For the last week, I've struggled with the idea of hiring full time help. I was trying every which way to create a plan that would work with just a part-time person, but to no avail. I couldn't figure out how to make it happen, but truth was, I just didn't want to admit I would need anything more than the last time. I'm an active, relatively healthy woman - why shouldn't I be just as capable as the next mom? Why should we have to pay someone to do what I should be able to do myself?
And that's when I knew I needed to take a step back, and think about all of the lessons I've learned in my life with lupus. That the reason I am capable, active and healthy is because I take the steps to ensure that I stay that way. And that includes asking for help when I need it, and accepting it with open arms. That's what living well is all about - physically maintaining a good, healthy lifestyle, but also (and sometimes, most importantly), achieving an emotional understanding of what that requires and then making it happen. Putting pride, stubbornness, and determination aside in order to make room for smart, methodical, well-crafted decisions that help me stay healthy - that's the name of the game.
Looking at it another way (and isn't there always "another way"?) - if hiring full time help enables me, a lupus patient, to have and raise two lovely children, to be able to play with them, love them, and care for them as only a mother can - why should I even hesitate? This decision, one that requires that I put aside my pre-conceived notions of what I should be capable of or what I imagine every other mom can do on her own, requires nothing more than a mind shift on my part. Johnny's on board, my family's on board...don't you think it's time "Mom" got on board?
Consider it done.
Of course, I'm not going to claim that there weren't a few tears involved...but that's fair and to be expected. As my girlfriend says (and as I describe in my book), we're entitled to grieve for ourselves, at least a little bit. Those tears and emotional outpourings simply make room for the joy and happiness that come from living well, despite our disease. And if hiring someone to help out all day long paves the way for that happiness, I'm all for it.
Monday, September 6, 2010
One month to go - and then this little munchkin will be out and about, and ready to tackle the world. Oh boy. Deirdre - are we ready?
Friday, September 3, 2010
1. Shrimp : Its shells contain high levels of glucosamine, a known vitamin to help combat inflammation of the joints.
2. Salmon : A regular of “top foods” list, salmon is an excellent source of omega 3 fatty acids that have benefits for weight, heart health, and of course, joints.
3. Almonds : Almonds are also high in the omega 3 fatty acids found in salmon. They also have loads of vitamin E and manganese. Adding manganese into your diet will help the glucosamine in your body, as well as speed up and increase its productivity.
4. Pineapples : Containing an element called bromelain, it has remarkable healing properties. According to Boulder Natural Labs, bromelain and its ability as an anti-inflammatory is superior to that of a comparable drug.
5. Extra Virgin Olive Oil : Because extra virgin olive oil is derived from the first pressing of olives, it has the most antioxidant benefits. These work to extract the free radicals in your body that can lead to inflammation and joint pain.
6. Bell Peppers : All peppers are rich in vitamins A, C, and K, but red peppers are the best choice, included for naturally fighting joint pain. Antioxidant in peppers help to prevent cell damage, cancer, and diseases related to aging, and they also reduce inflammation like that found in arthritis and asthma.
(Note - I always thought bell peppers were night-shade vegetables, which I've tended to avoid - but I'm finding conflicting information online. Some sites say they are, others say they aren't - so this one may require a little personal trial and error.)
7. Avocado : Good news for everyone who loves guacamole: it can help you joint health. In fact, it has been referred to as “the most nutritious of all the fruit.” It provides about twice as high a proportion of the daily needs for antioxidant vitamins as its calorie proportion.
8. Turmeric : Orange in color and often used in Indian cooking, it is long known for its anti-inflammatory properties. The site Health Diaries has 19 other reasons to add turmeric to your diet, in addition to fighting off arthritis.
9. Ginger : Denmark researchers have discovered that ginger can block the effects of prostaglandins. These are substances that cause inflammation of the blood vessels in the brain, which leads to migraines. Just a half teaspoon of ginger in your tea can lead to marked relief in arthritis pain.
Worst Foods for Joint Health
1. Red Meat : According to British researchers, eating a diet high in red meats could actually lead to rheumatoid arthritis. The study linked the amount of protein taken in with higher risk.
2. Dairy : In an entry from PCRM Health, they tell the story of a woman who was completely cured of arthritis after eliminating dairy products from her diet. With the theory that it has similar properties to the above, the protein found in dairy may have been the cause of her joint pain. If you suspect dairy may be causing your arthritis pain, try cutting it out of your diet or substituting for soy milk and other alternatives to dairy.
3. Saturated Fat : Because this is a main source of weight gain and has inflammatory properties, saturated fat can be a bad choice for those with joint pain. Butter, cheese, fatty meats, and more all contain high levels.
4. Trans Fats : According to The Examiner, trans fats are linked to belly fat, ADHD, cancer, diabetes, and arthritis. These fats are commonly known as hydrogenated or partially hydrogenated oils and can be found by reading the nutrition label.
Wednesday, September 1, 2010
I'm thankful every single day that I started attending a lupus support group early on - so that I could hear the script being read by everyone else in the room, and not just me. So that I could see their heads nod in agreement, hear their words of encouragement, and feel the power and strength they were able to conjure up, in spite of their disease.
It's because of the women and men in my support group that I was able to see clearly enough to make sense of my 0wn life with lupus. They earned a credit in the Acknowledgements of my book, and appear in practically every chapter. Without them, I would still be floundering...and blindly reciting the lines from the lupus script over and over again. See if any of these "lines" sound familiar:
If I slow down, I'm afraid I'll lose my get-up and go attitude.
My future is never, ever going to be the same.
If I give in to the disease now, I'll never be able to reassert myself later.
I have to take advantage of today - who knows what I'll feel like tomorrow.
If I don't act like I'm sick, maybe I won't be.
Every day I wake up in pain - will it ever stop?
I have so many decisions to make - about my job, my life, my family - but it's so hard to think straight.
How can I ever get ahead of the disease when it seems like every day, there's a new symptom, a new side-effect, or something new that I can't do?
I said all of these things and more, many times, over and over again. Don't think you're alone, and don't feel that you have to face this without help. There are ways to work through life with a chronic illness - ways in which you'll be able to emerge victorious. The script you're reading from just needs to be rewritten.
Do you have someone you can talk to who knows what you're going through? Are you in contact with other people with chronic illnesses? Are you attending a support group? If not, I encourage you to reach out, and connect with someone today. Maybe you're not quite ready to attend a meeting, but I bet you're definitely ready to feel like you're not alone. Check out the Lupus Foundation of America website today - give a call to the office - talk with someone who understands.
And my revised script? It even has a name. It's called "Despite Lupus."