Wednesday, June 30, 2010
Getting the Ick Out:
1) Invite a family member, close friend or confidant to join you in the exercise - Fido or Fluffy will do just fine, too. (Read complete instructions before selecting said partner, however!)
2) Lie down on the bed, a couch, or any flat comfortable surface, ideally one that is big enough for a little tossing and turning (for all parties.)
3) Get into a comfortable position, one that makes you feel safe and a bit child-like (I prefer the left-side fetal position)
4) Begin moaning, not like a drone, but more like a whine/sigh kind of thing. Breath deeply before each whine, so that you can really get some umph behind it.
5) Let yourself toss and turn a little bit, almost as if you're throwing your own little pity party, while continuing to let the whines come bellowing through. (Your partner in crime can do this at the same time, or you guys can take turns. Johnny and I find that once we both get going, the whines turn into giggles, and then we end up laughing out loud - which of course, is a great way to finish up the exercise.)
6) Allow the whines and sighs to come from deep within - expelling with each noise the frustration, anger and resentment you're feeling with lupus on that particular day. You can even envision the pain and swelling being emitted through those whines and cries. Remember - you're getting "ick" out - so that actually covers quite a bit of ground.
7) Once you've let a significant amount of "ick" out, stop groaning for a moment, think about what you're doing (lying on a bed whining and pining), and determine whether or not you're finished for the moment. If there's more "ick", continue on. If not, take a few "ick-free" breaths, get up slowly, brush yourself off (removing any "ick" residue), and continue on with your day. (Or take a nap, read a book, or embark upon any other task that is particularly enjoyable after "de-icking" yourself.)
Let me know how your "icking" sessions go. I would embark upon one right now, but blogging is actually a pretty darn, cathartic process in and of itself!
Monday, June 28, 2010
But I got to thinking about this concept of "breaking the rules" - which is exactly what she wanted to do with her cup, or the chalk, or whatever - but I wouldn't let her. And I was thinking that as we get older, there really are very few people who force rules upon us...we're kind of in charge of sticking to the straight and narrow ourselves. But there's one entity, I'll call it, that does enforce rules upon me - and that's that nasty chronic illness of mine called lupus. While I'm pretty fat and happy living well, despite lupus these days, I do find that there are a few rules I'd like to break with lupus. I don't hate EVERYTHING about lupus - without it, I wouldn't have this blog, or have published a book, or have connected with thousands of people across the world, or have gotten my priorities straight early on in life. But there are a few select rules of the lupus game that I wish I could break:
The nap - I know, I know. I'm actually quite thankful for my nap, and the fact that a mere 2 hours out of each day gets me a whole life of normalcy is pretty great...but I would be fibbing if I didn't say that not having to fit in a nap each day might be, well, kind of cool. I know it's great that I have a built-in excuse to nap, but I'm just saying...the doer in me would have a field day with those two hours.
The neo-natal lupus aspect - A DL reader and I were recently emailing about that fact that when you're considered a high-risk pregnancy, you're like the VIP of the maternity ward - you get the best treatment, usually go to the front of the line, and typically get cut a little more slack with the lactation consultants and the nurses in general. All in all, it's not a bad deal, particularly since I get to see this little munchkin in my tummy about a dozen times during the pregnancy, rather than just the typical two sonograms with a normal pregnancy.
So do I mind being pregnant with lupus? Not really (especially without those daily lovenox shots this time around!) But would it be kind of nice not to have to even consider the aspects of having a lupus pregnancy - the congenital heart block, the medications and the effects on the baby now and during breastfeeding, the concerns during delivery, the post-partum flares, the possibility that KitKat could be born with signs (temporary, though they may be) of lupus? Absolutely. And while I can't say I'm happy about the fact that I could be passing on this chronic illness to Deirdre or to KitKat, I have to say that today, I wouldn't trade my life for anything. And if they, too, have lupus down the road, I'll just have to show them how well you can live, despite it.
Swelling with infection or illness - This one isn't all that bad, but I'd be kidding you if I said that when I get a cold, or allergies, or the flu, I wish I didn't have to contend with the effects of lupus, too. But, again - my doctors do a pretty good job of pushing me to the front of the line when I'm sick...so I can't complain too much. I get great care, can always get an appointment, and I feel that they take extra special care of me when I'm ill. Or maybe they're just worried that if they don't, they'll read about it here. Hmmm. What a strategy!
The sun - And while this one is DEFINITELY a "I wish I could break this rule" contender, I have to say that staying out of the sun has saved my skin (and a few freckles) in the long run. My mom is a perfect example of staying out of the sun. As a kid, it used to drive me crazy that she wouldn't participate in sunning activities with us...but now, as she ages, I see how much she's saved her skin. Her sweet little wrinkles are there, but not nearly what they could be or would have been had she been an outdoorsy kind of a gal. Of course, I'd like her to walk up to the corner of her street and back at dusk a few more times than she does, but that's a different story, and, I suppose, a different blog altogether.
So there's my short list. Have any lupus rules you'd like to break?
Friday, June 25, 2010
Diagnosed when she was a senior in high school, she's endured more than 20 surgeries and countless hospital stays over the years. Her fight against lupus continues today, but she's working hard to educate and enlighten people about the disease, often through her speaking.
What I found most interesting is that she feels that being able to speak clearly and candidly with her doctors has been essential - a real benefit of perfecting her speaking skills. She says, " Sometimes a doctor gives you an answer that's just not thorough enough, and you really need to know more. You have to be assertive." In fact, she believes that she was able to prevent an unnecessary surgery at one point because she was assertive and questioned the original plan of action.
She encourages other lupus patients to" Speak up and ask questions. When you get answers, make sure you're completely comfortable with the advice you receive." Well said, Ms. Rundles!
For more about this accomplished fellow lupite, click here to read the entire article.
Wednesday, June 23, 2010
Many women watch their lupus symptoms all but disappear during the 9 months of pregnancy, in exchange, of course, for nausea, bloating, heartburn and weight gain...none of which are any fun. But they welcome the respite from lupus until after the pregnancy - some continuing to feel good post-partum, while others experience a return of lupus symptoms several weeks after giving birth. (Years ago, I'd heard about the high percentage of women with symptom-reprieve during pregnancy, and thought it would be a good way to fend off my disease -a terrible idea that didn't work, and only backfired.)
Of course, this idea of symptom-reprieve isn't a guarantee, and a few women do experience an increase in symptoms. While I haven't been completely symptom-free during this pregnancy (I'm 23 weeks today), I would DEFINITELY say that lupus-wise, I've felt great during both this pregnancy and with Deirdre.
But, as described in the article, research being done at NIH and University of Michigan could reveal the reason why so many people do feel good. And note that while lupus isn't specifically mentioned in the article, here's hoping that where there's a major step made for autoimmune disease, a baby step could follow for lupus.
Here's a quick snippet, but be sure to click here to read the entire post and the U of M health system article that inspired it:
"When studying a small group of pregnant and non-pregnant women, researchers at the University of Michigan and the NIH found the expression of an enzyme known as pyruvate kinase is reduced in immune cells in pregnant women compared to non-pregnant women. And the expression of the enzyme was lower in healthy pregnant women compared to those with preeclampsia, a condition with components similar to autoimmune diseases.
The study is significant because the newly discovered mechanism points to a pathway that could be targeted for treatment. “It may be possible to design drugs that mildly suppress pyruvate kinase activity as a means of replicating the immune status of normal pregnancy,” says Petty [biophysicist at U of M leading the charge].
If drugs can be designed to suppress pyruvate kinase activity, they may prove effective at treating a variety of autoimmune disorders. “I have a long list of things I’d like to see developed for the clinic in the next five years,” Petty commented. "
Friday, June 18, 2010
And I've witnessed this phenomenon in other people, too. My sister-in-law throws around words and concepts about gestation and premature birth conditions that I know she never knew before; a beloved babysitter of Deirdre's now knows more about dysautonomia and the autonomic nervous system than she ever thought she would, now that she's been diagnosed with POTS.
And that, of course, is all part of what it means to be living well, despite lupus. Not just physically, but emotionally and mentally, too.
Wednesday, June 16, 2010
(Article quoted below from NewsGuide.us, 6/1/2010)
It seems that NIH scientists have discovered that the activation of immune cells called basophils causes kidney damage in a mouse model of lupus nephritis. These findings and the team's associated research in humans may lead to new treatments for this serious disease, a severe form of systemic lupus erythematosus (SLE) that affects the kidneys and is difficult to treat.
One such potential treatment, the asthma medicine omalizumab, is already on the market. It blocks IgE from binding to the surface, and potential activation, of basophil cells, which might prevent basophils from promoting kidney inflammation. The NIH team is currently planning a safety study of omalizumab in people with SLE.
"We are excited by the potential of these findings in the treatment of lupus. Obviously, whether omalizumab treatment or other strategies to reduce basophil activation in lupus will prove efficacious remains to be seen. Nonetheless, this work opens new avenues of investigation in lupus and, at the very least, we have gained an understanding of how autoantibody production is enhanced in this disease," said Juan Rivera, Ph.D., the study's senior author and deputy scientific director at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the NIH institute that conducted the study.
Click here to read the entire article. Lupus nephritis sufferers - headway is being made and hope is on its way!
Monday, June 14, 2010
Love Simple, a comedy/romance is celebrating its launch on iTunes by working with the SLE Lupus Foundation to raise money for lupus research and awareness. For the week of June 14-21, 30% of the film’s iTunes proceeds will go to the foundation. Hailed by Variety as an “engaging neighborhood pic...with genuine flair and wit,” Love Simple is a coming-of-age romance whose lead female character suffers from lupus.
The depiction of a lupus sufferer is rare in film (the producers can't find another!) and Love Simple stars NYC actress Patrizia Hernandez, and Caitlin Fitzgerald from It's Complicated.
In addition, the producers of the film will donate 10% to the SLE Lupus Foundation for the life of the film on iTunes. Wow! What a tribute!
Below you'll find the trailer, and click here to check out their website. And spread the word!
Friday, June 11, 2010
Human Genome Sciences, Inc. (HGSI) announced that it has submitted a Biologics License Application (BLA) to the U.S. Food and Drug Administration (FDA) for approval to market BENLYSTA® (belimumab) for the treatment of systemic lupus erythematosus (SLE).
The BLA submission includes the results of two pivotal Phase 3 clinical trials in autoantibody-positive patients with SLE showing that belimumab met its primary endpoint. In the Phase 3 studies, known as BLISS-52 and BLISS-76, belimumab 10 mg/kg plus standard of care achieved a statistically significant improvement in patient response rate as measured by the SLE Responder Index at Week 52, compared with placebo plus standard of care. Study results also showed that belimumab was generally well tolerated in BLISS-52 and BLISS-76, as demonstrated by a similar rate of discontinuations due to adverse events across treatment groups, with overall adverse event rates comparable between belimumab and placebo treatment groups. The design of the two trials was similar, but the duration of therapy in the two studies was different – 52 weeks for BLISS-52 and 76 weeks for BLISS-76. HGS designed the Phase 3 program for belimumab in collaboration with GlaxoSmithKline (GSK) and leading international SLE experts, and in consultation with the FDA. The two studies treated a total of 1,684 patients.
BENLYSTA is being developed by HGS and GSK under a co-development and commercialization agreement entered into in 2006. GSK submitted a Marketing Authorization Application for belimumab to the European Medicines Agency (EMA) on June 4, 2010.
Click here for a Dow Jones story about this exciting news. The ALR supported some of the important basic and translational research on the molecule targeted by BENLYSTA, BLyS, also called B cell-activating factor (BAFF). We (ALR) are very excited about this milestone, and look forward to bringing you more on BENLYSTA in the months ahead.
Wednesday, June 9, 2010
"Ill in a Day's Work"
by Donna Jackson Nakazawa
A great deal of stigma is attached to chronic illness in the workplace," says Stephanie Woolhandler, MD, co director of the internal medicine fellowship program at Harvard Medical School. "The system isn't very fair to anyone who is sick. But it is particularly unfair to women, who are more likely to suffer from chronic illness during the prime working years." Women who are sick find themselves in a triple bind: unable to excel at their career because they are sick; unable to take good care of their health because they are working; unable to quit because they need the health insurance they can get only through a job. "If you have to quit working altogether, the options for health insurance are pretty dismal," Woolhandler says. "You'll be eligible for COBRA, but you'll have to pay full premium out of your own pocket. Many people on COBRA incur huge debt and end up in bankruptcy. When COBRA runs out, you may qualify for Medicare. Or you may spend until you reach poverty level and get Medicaid. But if you have cancer, you cannot buy private insurance after COBRA runs out. No one will sell it to you.
Click here to read the entire article.
Monday, June 7, 2010
However, all of that has changed recently, as I just scheduled an appliance repair man to come out next week and fix, not only the washer, but the dryer, too. In this post, I'd like to focus on the washer, as I can only dwell on our broken down appliances one at a time, for my own sanity.
So this washer, having been a work horse and fairly reliable up to this point, has become terribly inefficient. The problem? The water won't drain during the wash cycle. You run the wash through once, the timer goes off, you open the lid, and the clothes are knee-deep in water. It's as though the washer just skipped the spin cycle. So you run just the spin cycle a second time. Less water, but the clothes are still sopping wet. You run it a third time, and then, and only then, is the water drained enough to swap the clothes over to the dryer. But oh, how annoying it is to have watch over that washer! Not only does it take time to keep running the cycles over and over, it takes supervision. It would be one thing if I could just run the clothes again (not that that would be a great solution), but in this case, I have to hang around, doting over that silly washer for an extra 20-30 minutes. It's the worst use of my time EVER!
And not only does it not rinse, it's just started leaking a bit, squeaks when it spins, and bounces all over the place during the final, final, final rinse cycle. It needs to go - or else I go. Or so I told Johnny. (He would, of course, want me to note that he encouraged me to call the repairman a week earlier. But I was trying to tough it out, you know, just "make do", "suffer silently", "ignore the damage"...which is so like me to just push through. Why do we do that? And for so long? Ugh!)
But now that the repairman has been called (note that it was only after the dryer stopped working that I called), I can rationally expound on the ineffectiveness of forcing and/or expecting the washer to do its job (which is my problem, not the washer's) when it's not working at 100%, or more aptly put, broken.
As I alluded to above, that was me to a "T" when I used to push myself too long or too hard with lupus. I'd force myself to perform, even when I wasn't at my best. It would be the most fruitless effort to call upon myself to execute when I was basically incapable of doing so. And not just when I was feeling sick. It currently happens when I cut into my nap time to work, do errands, or do house stuff, or when I chose to work late into the evening. Whenever I get tired - the exhaustion sets in, I begin to lose focus, have trouble thinking straight, and have a tough time making sense. So how efficient (or effective) am I when I push myself past my prime? Not very! (Note that the washer is definitely past its prime!)
It makes no sense to do that - particularly because the time I'm "gaining" isn't really productive. I'm working at half mast - and it probably takes me an hour to accomplish what I could normally do in 20 minutes.
That said - I'm much better than I used to be at tackling and scheduling my daily tasks and to-do's during my most efficient time of the day, which very clearly does NOT include the hour before my nap time or the last hour of my day. If I'm attempting to accomplish anything that requires any degree of critical thinking or decision-making skill, it's best if I put it off until after my nap or the following morning, when I can efficiently and effectively tackle the job.
So what's the moral of the story? I need to get a new washer (or at least get this one fixed), and I need to respect my nap time, instead of expecting miracles out of both entities - when they're expired, spent, and working beyond their capabilities. It's not productive, it's inefficient, and it's a waste of time to do otherwise, on both accounts.
Thus, it's decided...there will be no more spinning the truth or wringing out an extra ounce of work from either party! (Sorry - I just couldn't help myself!)
Friday, June 4, 2010
So for now, Kit Kat will be staying put, unless the baby decides on his/her own that it's time for some gymnastics. Good news is that one of the recommendations to turn the baby is to go swimming - allowing the weightlessness of the water to encourage the baby to flip. Deirdre and I have that covered, as our new favorite hangout is the pool we joined last summer. PLUS, they sell food and have plenty of shade. What more could this lupus preggy ask for! I say lupus and pregnancy do mix...poolside.
Wednesday, June 2, 2010
I, of course, have been on (and blogged about) prednisone for the majority of my life with lupus. I was able to go off of the drug completely for about 2 years, while I was on CellCept (note I was on CellCept a total of three years - 1 year with prednisone, and then 2 without). Currently, I'm on 5mg of prednisone every other day, and am loving life. According to my doctor, it's not a high enough dose to cause any real damage, and 5mg is just enough to keep me pretty much pain-free while not bringing with it any of those crazy side effects. And per doctor's orders, I'm able to add a fiver (a 5mg pill, that is) every once in awhile on my non-prednisone days, if I'm feeling crummy. And again, I'm happy with that. Gives me a little leeway, and allows me to really judge how I'm feeling from one day to the next. So bring on the 5's - I'm happy right here!
That said, I've had my fair share of high prednisone doses. I was on as much as 80 mg a day - not for more than a couple of weeks at a time, but long enough to see if it would rid the fluid from the lining of my lungs (which was an unfortunate negative). But 60 mg a day was the only thing that seemed to work for awhile - and I'm telling you - that is a lot of prednisone! 20mg was about the norm for me, but anytime I was on the drug, my doctor was always being strategic about how we were going to get down to a lower amount. And while I was always so proud when I was able to get down to a lower dose (even 5mg less made a difference), I started shaking in my boots when I would near the 10mg mark, because I knew what was in store. My body, for whatever reason, did not like going below 10mg. At all. I would be on 10mg daily, without a pain or a hitch, and then per doctor's orders, I'd try stepping down by 2.5mg, and it would be flare city. It was like I hadn't taken any medication at all!
It took a couple of years (along with a good dose of patience, understanding, and re-evaluating of expectations) before I could go lower than 10mg. And once I did - you'd thought I'd won the lottery! I was so proud of myself - not for just being able to shave off a few milligrams, but because I had been patient with myself. I hadn't rushed the process. Rather, I'd consistently tried to wean off the drug, but if my body told me it wasn't ready, I wouldn't push (which is so unlike me.) I just waited, and worked on other parts of my life with lupus (getting enough rest, not working too much, not overexerting.) I thought that if the other aspects of my life came into balance, then maybe those 10 little milligrams wouldn't have to work so hard - and my body eventually wouldn't need them. And you know what? It worked!
So now that you know the dance I've done with prednisone, I'll ask you to share yours. What's your magic dose of prednisone - or should I say, your "stumbling dose"? The dose where you're body says, "Whoa, there!" and suddenly seems to freak out if you go below it.
Let me know by casting your vote in the poll at the right. I'm hoping I'm not alone in my weaning woes!