Friday, October 31, 2008
Miss Deirdre (seen here in her pumpkin hat) is proud to announce the arrival of her adorable new baby cousin, Liam Thomas Gretter Rice! Little Mr. Rice arrived on Thursday, October 30th, at 4:04pm, weighing in at 8 lbs and stretching a full 21 inches long. He and Mama Rice are doing spectacularly. How cute is this guy?! And check out how proud big sister is!
Although I think Deirdre is going to skip the trick or treating this year and just man the front door, she will be all decked out in her Halloweeny outfit. Cute, huh?
Wednesday, October 29, 2008
With the cool winter months approaching, it might be time to prepare your joints for the chilly weather. Have you ever thought about purchasing a paraffin wax bath for home use? During my achiest months, I was using my wax bath daily. In fact, when I was still working, Johnny would check in with me before I left the office to find out if he should plug in the bath so that it would be ready-to-use upon my arrival home. More often than not, the answer was yes.
Thankfully, these days I don't have much arthritic pain in my hands and feet, but I still enjoy the warmth and softness the wax bath brings to my extremities. There are tons of options out there on the market - some more expensive than others. I found the consumer grade wax bath to be more than sufficient - just allow a couple of hours to melt the wax before you intend to use it. If you've never had the pleasure of a paraffin wax treatment, you can do so at most nail salons. I encourage you to try it out first (they usually just add on about $10-$15 to the cost of a manicure), but I'm convinced you'll be hooked!
Here are my recommendations for purchase:
Revlon RVS1212 MoistureStay Luxury Paraffin Bath, $26.99 on Amazon.com
HoMedics Paraspa Deluxe Paraffin Bath, $39.94 on Walmart.com
TherabathPRO Professional Grade Paraffin Bath, Scent Free, $139.95 on Amazon.com.
Most baths (including these three) come with several blocks of wax that can then be melted individually once you're ready to use your bath. Both the Revlon and HoMedics baths include plastic liners (which help keep your wax-covered hands hot and moist for as long as possible while reducing mess), but the Revlon bath also includes a pair of thermal gloves for extra warmth and comfort. I also know from personal experience that the Revlon is large enough for your feet. Just things to consider as you're shopping around.
Here's out it works:
To use, plug in bath, adding appropriate amount of wax per instructions included in packaging. Once wax is melted (allow several hours), simply dip your hand, elbow or foot into the warm melted wax and then re-dip so you get two or three coats. You will look and feel as if you just put on a warm, white glove. Slip your hands into the plastic liner and then into the mitts (if included) and relax as the wax solidifies as it warms and relaxes your aching joints. After about 10 minutes, the wax will have, unfortunately, cooled off. Remove the mitts and then the plastic liner and peel off the hardened wax. Just talking about it makes me want to plug in my bath!
Check out the convincing reviews if you're still skeptical:
*I've had mine for 3+ years now and it is still working like brand new. I love it and use it all the time as I have very dry skin year round. It does take several hours to melt the wax as stated earlier but I keep it plugged in on the lowest setting so it is ready to use at all times. I convinced my father to try it to relieve the misery of severe arthritis in his right hand. It works wonders for him. (HoMedics)
*I have had this product for at least 5 years and use it all the time. I have achy hands and wrists and use it whenever I am in pain. Helps alot. I gave one to my 90 year old mother and she loves it also. (HoMedics)
*This is a product that must stay on all the time for daily use, so I am glad that I spent the extra money for a professional model with a "smart" thermostat. My wife has arthritis and it's worth it to see the smile on her face after she immerses her hands in the paraffin. It's a great relief to her. (Therabath)
*This handy little unit is a multi-tasker. It is really good for smooth skin, with moisturizer in the scented wax, and is great for pain relief for people with arthritis. It heats up fast & has temperature controls so that you don't get burned. it is compact so it doesn't take a lot of counter space. (Revlon)
*I was recommended paraffin wax dips by my doctor for my sore hands/wrists. I've only had this for a short time, but my experience so far has been good. My hands get really dry during the winter months, and no amount of lotion seems to help. Using a thick lotion before dipping into the wax had an immediate and lasting effect. The hot wax does act like a heating pad and helps the soreness problem in the short term. I'm hoping that regular use will help with the pain for longer periods also. This particular bath fits my hands or feet, but without much room to spare. If you have larger than a size 8 foot, you may want something a little bigger. (Revlon)
Monday, October 27, 2008
As I mentioned before, there are several Let's Dish meals that can be cooked directly from the freezer, and I tend to think those are the best options for people like us. In fact, the company seems to understand the desire to make the cooking efforts at home as minimal as possible, and as such have increased the number of meals that can be cooked-from-frozen. In addition, they now provide a special set of cooking instructions on alternative ways to cook almost all of their meals directly from frozen. Called "Freezer Freedom", these instructions serve as a guide to those of us looking to cut down on the time in front of the stove, because standing and stirring aren't usually arthritis-friendly, and time is not always on our side.
In addition, they've recently added a special program just for new moms, waiving the delivery fee for any 8-meal order placed during the first three months after you have the baby. (I can just imagine my sister placing her pre-order right now!) You can read more about the free delivery option here.
Now to figure out how the baby can eat the Chicken Parmigiana I have in the freezer!
Friday, October 24, 2008
Here's another excerpt from my pending book, Despite Lupus: How to Live Well with a Chronic Illness, which is well on its way to becoming a tight, concise, well-composed manuscript, thanks to my editor, SFB. This short snippet is taken from Chapter 1 titled "Choose Well", from the section, "You Can Do It". It refers to your ability to make the effort to live well, despite the obstacles that may be ahead of you. Let me know what you think!
When I think back to the reasons I decided to write this book, one thing becomes abundantly clear. I did not contemplate writing this book on a day when my joints were swollen to double their normal size, or the pain was so excruciating I couldn’t even lift a glass to my lips. Those days certainly gave me the background I needed to write the manuscript, but the impetus for the book came during days when I felt really good and Lupus mysteriously fell quiet. It was on those high-quality days when I was reminded how wonderful life can be. I realized I was still capable of feeling normal, still competent enough to hope, and blessed enough to believe. That’s why I wrote this book – to celebrate moments like those and to remind others that it’s still possible to live well, despite Lupus.
Over the years, when I haven’t been able to believe so unabashedly, my mom has given me bountiful bits of wisdom and support, never failing me when I needed her the most. It was one of these times, when I was incapable of seeing the light at the end of the tunnel, that she gave me this phrase, one that I’ve repeated and shared many times since then.
Regardless of your religious or spiritual orientation, a statement like this has to give you hope, consolation, and encouragement. Just believing that you have the stuff to make it through might be enough to get you there, but coupled with the notion that someone else is watching out for you has to be the greatest security blanket available. While the unfamiliarity and insecurity of the place you are today is daunting, scary, and uncomfortable, imagine the strength, courage, and hope that’s welling up within you, just waiting to be called to duty. “Victim of a chronic illness” is probably a label you never imagined you’d have, and certainly not one you ever wanted. In fact, you don’t really understand how you got it in the first place. One day it wasn’t applicable, the next day it was, and it happened without your consent, input, or approval. But life has a way of charting its own course, and surprising you from time to time with the stops along the way. It’s up to you to readjust your compass and rework the travel agenda, knowing that if you stick with it, you’ll reach your destination in the long run.
Wednesday, October 22, 2008
Here are a few pictures of the doll baby - isn't it amazing how much she's changed? Note the picture of her with her proud, older cousin. Isn't Emmy going to make a great big sister? Hopefully within the week!
Having enjoyed these first two weeks immensely, despite a little fatigue here and there, I've found that following Henry's lead in three distinct areas makes for a happy and healthy mom (and baby.) Here are the cues I've been taking from Mr. Henry, all of which happened to ring true during my worst bouts of Lupus. Isn't it interesting how the concept of "taking care of yourself" can be pretty formulaic?
Tips from Henry the Pug:
1) If you don't feel up to walking (or in my case - cooking, cleaning, or doing laundry), don't do it.
Henry is the master of refusal - turning away many an opportunity to take a walk outside. He might argue that our driveway has a bit of an incline, or he could claim that he needs to wait longer for his food to digest - but in either case - he has the "I don't feel like walking so I won't" thing down pat. And you know what - in the case of slightly fatigued parents of a two-week old - the theory isn't all that bad. If I'm too tired to make something for dinner, I shouldn't. If Johnny is too pooped to mow the lawn, he should skip it. Now it just so happens that we've been able to do both of these things several times over the course of the past two weeks because our daughter is a pretty good night sleeper. But in the case that she decides to stop her good habits, we'll need to keep in mind Henry's advice. If we do, we'll be able to slough off the stuff that doesn't have to get done, without feeling guilty about it. I can guarantee you that Henry the Pug feels no guilt.
2) Perfect the art of catnapping (or rather, pugnapping.)
Henry and Darwin both have the uncanny ability to close their eyes and instantly be asleep - and I'm learning how to be able to do the same. I've always been a good napper, but it's become apparent just how valuable closing my eyes for 20 minutes can be. I used to bank on an hour and half to get me through (and I still get a good hour in the morning and another 2 hours in the afternoon, thanks to my husband and an afternoon babysitter), but in the wee hours of the night, when Deirdre can't make up her mind whether or not to fall asleep, getting a wink here and there really helps.
Although here, she's trying to act like she's got the whole thing figured out.
Come to think of it, maybe the pugs could sharpen Deirdre's sleeping skills. Perhaps in this picture, Henry was trying to help her work out the kinks.
3) When all else fails, try to look your best. It usually makes you feel better.
Henry always appears well-groomed. I'd even put him in the "dapper" category, but I realize I'm terribly biased and therefore won't go on and on about how cute and adorable he (and his brother) really are. However, there is value in trying to look put together - and I've learned that I feel a whole lot better about myself if I've showered, dried and styled (albeit quickly) my hair, and put on a little makeup. My morning routine lasts all of 20-25 minutes, but Deirdre seems to love the sound of the shower and the whir of the hair dryer - both of which put her to sleep. So I'm enjoying taking a few minutes to make myself look decent (i.e. wash off the dark circles under my eyes) and look forward to feeling refreshed and renewed each morning. I remember feeling the same way when I was sick with Lupus. It always helped to at least appear put together. That way, when you pass by a mirror or someone stops to say hi, you don't look like death warmed over, even if you feel like it. Looking good I believe partially translates into feeling better.
But I think Deirdre is skeptical of the whole bathing/grooming concept - although she seems to like the aftermath quite a bit, don't you think?
But who wouldn't enjoy being wrapped up in a big, pink petal?
Monday, October 20, 2008
Can Lupus patients donate blood?
1) Before donating, discuss with your doctor to determine whether or not you (and your blood makeup) are good candidates for blood donation.
2) If you are too anemic (have a low red blood cell count), don't donate.
3) Each blood donation bank has its own guidelines. American Red Cross used to disqualify Lupus patients from giving blood, but according to Dr. Merrill, this is no longer an issue. However, based upon my research (and that of my doctor's), it seems that the ARC will, indeed, accept blood from a Lupus patient, provided that one's condition is "inactive" and that a patient is "feeling well." The trick? What is meant by "inactive" is a bit vague and not well defined.
The good news, though, is that if you meet the criteria mentioned above, the ARC will allow you to donate even if you are on Plaquenil and/or corticosteroids (prednisone). Note, however, that certain immunosuppresive medications (e.g. methotrexate or cellcept) or biologic agents will disqualify you from donating.
4) Since blood components are separated, the only components in a person's blood with Lupus that might be problematic are plasma and antibodies. Red blood cells and platelets should be safe to donate as long as the donor has sufficient amounts for themselves (see point #1 and 2). More good news: apparently, these parts are the ones most often needed by people who receive blood.
And many thanks to Dr. Neil Stahl for his help in uncovering the truth on this issue, and for providing much of the valuable information above. Other facts listed above courtesy of the Lupus Now article.
Friday, October 17, 2008
I'm pleased to announce that on Wednesday, November 12th, Despite Lupus will be hosting Rosalind Joffe, co-author of the book "Women, Work and Autoimmune Disease: Keep Working, Girlfriend!" Joffe will do a guest post on the issue of whether or not to disclose your illness in the workplace, even if your symptoms aren't impacting your ability to get the job done.
In Keep Working, Girlfriend!, authors Joffe and Joan Friedlander identify the factors that make working particularly difficult for women with autoimmune disease, and then offer practical suggestions to address them. Exploring such issues as the complexities of autoimmune diseases and the correlation between disease, diagnosis, and career development, they detail exactly what it takes to be successful in a job, including developing strategies and tactics, evaluating communication skills, building a support team, and considerations for self-employment.
While the book takes a different approach to managing life with a chronic illness than I do, it does offer valuable insight and information on contending with a chronic illness should you feel compelled to stay in the workforce. While I found it paramount to my recovery to take a break from my demanding, fast paced career, I acknowledge that there are others who, for various reasons, need to continue working. While I could go on about the benefits of stepping away from the rat race, and the fulfillment that comes from untangling who you are from what you do, as Joffe says in her website bio, "I've spent the past 10 years creating work that would allow me to earn a living and that I could do regardless of my health". I certainly can't argue with that!
Here's a review of the book from Allison Shadday, author of MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis:
For the chronically ill, the decision to continue working or not, can be an agonizing one. Optimistic, but realistic, Women, Work, and Autoimmune Disease helps the reader carefully weigh the pros and cons of working so that they can make an informed and rational choice. Specific steps are offered to help you make accommodations that may allow you to stay in the workforce longer than you thought possible."
Wondering what Joffe's background is? Here's a snippet from the About Me page on her website:
I was diagnosed with an autoimmune disease when I was 28 years old, one month after marrying the most wonderful man I could ever have hoped for. Multiple sclerosis sounded scary and so were my symptoms (blindness in one eye and fatigue so extreme I could barely lift myself in bed). But I was lucky — it was a relatively mild case that progressed slowly over the years. From the start, I made career changes and limited my options to adjust to my health needs. Looking back, it’s easy to see why it was difficult to achieve the stability and career track I so desperately wanted. I struggled to stay employed, difficult as it often was, and even if I didn’t know why it mattered to me so much.
By the time I was 42, however, I was severely ill with debilitating ulcerative colitis that made it too difficult to hold a job. I had two beautiful daughters, a wonderful husband and a full life (even if I had lousy health) but I was miserable. And it wasn’t just because I was so sick. I knew that I’d feel less lost and depressed if I could work, my lifeline to being normal and to maintain some sense of independence. A series of surgeries to rid me of my diseased large colon and ulcerative colitis and new therapies for MS that halted the progression of the disease, have left me relatively healthy. I like to say that I got a Masters in education 35 years ago and I’ve earned my Doctorate in living and working with chronic illness.
Today, Joffe is a Chronic Illness Coach, helping others to juggle a chronic illness while navigating the pursuit of a career. Be sure to stop back by on the 12th to read what she has to say!
Wednesday, October 15, 2008
According to Despite Lupus readers,
*a whopping 72% of you were diagnosed between the ages of 19 and 45
*20% of you were diagnosed under the age of 18
*8% of you were diagnosed between the ages of 46 and 60.
Thanks for playing!
Sunday, October 12, 2008
Miss Deirdre Colina Gorman was born at 11:44 am on Wednesday, October 8th, 2008. She was 6 lbs 4 ounces and 19 1/2" long - perfect in every way. She is absolutely precious and she and mom are doing great. Labor was a little long for mom's taste (11 hours), but the actual delivery (post-epidural) was a breeze - about an hour of some focused, painless pushing and little Deirdre (pronounced Dear-dra) arrived on the scene, a beautiful head of dark hair and all.
You may be wondering about the sequence of events, since the last you heard - per my post last Wednesday - Bun was coming soon, but "not today!" Well - thanks to Blogger's handy-dandy scheduling feature, I wrote up that blog post on Tuesday evening about 7:30pm, scheduled it to be posted first thing on Wednesday morning, and then promptly went into labor 45 minutes later, around 8:15pm. Talk about the power of suggestion! Johnny and I panicked appropriately for a couple of minutes - me screaming about my water breaking (which, in the end, wasn't entirely true) and Johnny hopping around on one foot trying to change out of his pajamas pants into something more appropriate for an unscheduled trip to the hospital. We composed ourselves for the 25 minute ride, while I wondered why in the world I had thought it might be "fun" to go into labor the old-fashioned way (as opposed to a scheduled inducement.)
Mom and Dad are completely enamored - and are enjoying every moment of parenthood. Big Brother Darwin is pretty fascinated, too!
Wednesday, October 8, 2008
So here's the latest in Bun news. I had another doctor's appointment yesterday, during which I was contracting every 3-4 minutes with regularity, per the print-out of the 40-minute fetal non-stress test. We were supposed to be monitoring Bun's activities, but the excitement was definitely on my very regular, very significant contractions!
The doctor reiterated the importance of having my bags packed, and making sure that I monitor Bun's movements as well as those pesky contractions. They're pretty frequent, so it's hard to know when I should call in to the doctor. She says if they're more frequent than 6 an hour, call, but they're very OFTEN that frequent (per the example yesterday morning at the doctor's office), so I'm a bit stumped. Thankfully, we go back on Friday, so I don't have too many days to fret about whether or not to call. The nurses don't think I'll make it to next Tuesday...but we'll see! This week of pins and needles (also known as baby watch week) is definitely exciting. Don't know what Bun has in store for us, but whatever it is, it will be great!
So now that we're REALLY going to do this thing...either spontaneously this week or planned on the 15th...I need to start really considering what's going to happen post-Bun.
After talking with some friends of ours who have a similar work from home/stay at home situation, one suggestion was for me to resist the urge to ask Johnny innocuous Bun questions like, "Is it safe for Bun to take a nap in a onesie with a collar?", or "Do you think I should read a book to Bun before or after I change the diaper?" These, no doubt, are questions that A) can wait, B) I probably wouldn't ask if he was in an office somewhere far, far away, and C) my mom would really enjoy answering for me. More than that, I have many experienced mom-friends, not to mention my sister whom I already talk to twice a day, who are happy and willing to share their expertise with me. All I have to do is remember to call. Perhaps I should post a list of my friends' names and numbers on the outside of Johnny's office door, so when I go tromping up the stairs to to ask whether or not he thinks I should nurse for 11 or 13 minutes per side, I'll be stopped in my tracks.
But has a closed door ever really stopped me in my tracks? Hmmm. Maybe I should ask Johnny what he thinks.
Monday, October 6, 2008
I'm telling you - Bun decided to extricate him/herself from the nerve area just in the nick of time. Bun probably thought, "Hey, if moving a little to the left will buy me another week in here, I'm all for it. " Should I be worried that Bun is already practicing manipulation...in the womb, no less?
I am a little surprised at the relaxed way I'm accepting the change in plans. Usually, I don't look so kindly upon an alteration to my perfectly plotted schedule (particularly when I'm not the one implementing it), but perhaps I've matured in the past few months. It also helps to know that Lupus isn't getting the last word in this time. For once, the disease is staying in the background just where she should be, and Bun and I get to be the stars of the show for the time being. It's so nice to be able to make a decision based upon what's best for my baby (and me) without having to consider how my Lupus is going to react. The disease (and her symptoms) are, at the moment, behaving themselves - and I'm loving every minute of it! It feels so great being able to postpone the inducement date without any apparent complication. Even though I'll be going in twice this week for monitoring, waiting feels so right and so, I don't know, normal. Like this is what every mom-to-be would choose for her baby - to "cook" as long as possible. And now I get to make the same decision for Bun, despite Lupus. What a treat. What a blessing. What a triumph.
Now to break the news to Henry that he and Bun might share his birthday on the 15th!
Friday, October 3, 2008
We just got back from the doctor this morning, and based upon an exam of my cervix (which is posterior right now - meaning tilted back, not forward), my doctor has moved my induction date. Apparently, Bun has no intention of going anywhere anytime soon, and because I'm having such a successful pregnancy thus far (i.e. Lupus is under control), they're going to let me go a little longer before they induce (so I can have the greatest possiblity for a vaginal birth). I go back in on Tuesday the 7th for a check up, and then again on Friday the 10th to see if things have progressed. If nothing's changed, the plan is to check into the hospital on Tuesday the 14th, to be induced on Wed the 15th. The doctor doesn't want to go any later than 39 weeks (which would be the 15th), so I think that's a pretty drop-dead date, but then, I thought the 6th was too!
I'm thrilled for the delay. Not because I'm not ready to meet Bunorama, but because I just got a whole week of my life back! It really does feel a little bit like Christmas. Plus, I kind of like the spontaneity of the whole thing. Who knows - maybe my water will break or I'll go into labor, just like in the movies. More than anything, I'm pleased that the pregnancy is going so well that there's no mad rush to uproot Bun too early.
My only challenge now is to convince Johnny that just because we have an extra week or so, it doesn't mean that he should put off painting the handles on Bun's dresser. Bun would want the nursery done by Monday anyway, don't you think? (Please say yes!)
Thursday, October 2, 2008
Of course, the only thing the doctor is suggesting I take is regular strength Tylenol, which isn't helping much. (In fact, we had dinner years ago with a drug rep from Tylenol, and she claimed that Extra Strength Tylenol is really the least potent version one should ever buy. Everyone at the company seems to think anything less is ineffective. I'm tending to agree with her at this point!)
In search of relief, I googled SCIATIC NERVE RELIEF, and here were the first few options that came up:
a) Two weeks of bed rest - Not going to happen. I'm expecting a baby on Monday. Enough said.
b) Surgery. No thanks - I already have a hospital stay arranged for another small procedure.
c) Deep Tissue Massage, Acupuncture, etc. - None are recommended during my final days of pregnancy. Unless, of course, I want to speed up the entire process involuntarily.
d) Anti-Inflammatory Medications - Now we're talking. As familiar as I am with these guys, they're not recommended at this point either. And that's fine. Bun has had enough meds during the last 9 months. No need to pummel the baby with pills during this last week.
e) Exercises - Now this one is interesting. At first, I dismissed the exercises I found online, simply because I have a large, round protrusion in the front of my body that would prevent me from doing any of these exercises.
I mean, look at these positions - do they look belly-friendly to you?
However, upon further investigation, I've found a couple of Bun-friendly exercises that are helping, at least for the 30 seconds while I'm doing them. Putting my right leg in an "L" shape and pulling it into my body is working pretty well, as is letting my right leg go limp off of the side of the bed in an effort to stretch out that nerve (thank you, Kevin). Yes, balance has been a bit of an issue - but I'm managing. And really - I have nothing to complain about. A few days to go, and Bun will be out of his/her cage, albeit having inflicted pain on other parts of my body that I never knew existed. Ah, labor and delivery. Pure bliss.
In the meantime, I'm certainly open to other comments and suggestions for sciatica. I never knew so many people suffered from it until I started hobbling around. It's quite the conversation starter!