Wednesday, December 31, 2008
I know I have it easy. For one, my husband works from home. Dee and I try not to bother him too much during business hours, but because he's home, I feel that I can tinkle when I need to, vent when necessary, and share Deirdre's finest moments with someone who can actually formulate a sentence. (Not that Henry's snorts of approval aren't enough.)
Secondly, I have Leticia from 1-5pm everyday, giving me ample time to catch up on rest, eat lunch, or shower, should Deirdre keep me from accomplishing any or all of those things during the morning.
Additionally, I had very little pain/bleeding/discomfort after my delivery, and Miss Deirdre has been an excellent sleeper from day one. All of these things, I know, make for happy parenting. But in addition to these points, I'm beginning to think that having Lupus gave me an advantage over others when it came to dealing with medical professionals. According to my girlfriends, the leeway the nurses, doctors, and lactation consultants have given me since my delivery isn't all that common - and I'm chalking it up to the fact that I have Lupus. Here's why:
1) Although I planned to breastfeed Baby Bun from day one, I knew before I checked into the hospital that I was going to ask the nurses to keep the baby in the nursery during the wee hours of the night. Johnny and I looked forward to getting a little shut-eye, knowing it might be awhile before we had a full night's sleep once we brought the baby home. This required the nursers to supplement with formula for at least 3 (if not 4) feedings during the night, and I was prepared for resistance to my request. However, the nurses I had welcomed Deirdre into the nursery for the night feedings. They seemed to understand that I needed my sleep (due to my condition), and reassured me that one or two nights of formula/bottle feeding wouldn't hinder my ability to breastfeed. From what I hear, I was lucky, as not all nurses encourage this practice.
2) Because we'd hired a babysitter to watch Deirdre every afternoon for four hours, I knew I needed to rent a breast pump so that Deirdre could be bottle fed once, if not twice during that time. Johnny also wanted a chance to feed the baby, so we planned on frequently interspersing bottle feeding with breast feeding. To our delight, no one in the hospital argued with our plan. They seemed to understand that if I was going to succeed at this motherhood thing - I needed rest. So I had their blessing to pump away. Again - my girlfriends tell me that renting a pump and suggesting a bottle/breast feeding combination isn't always well received by the lactation consultants/nurses/doctors of the world.
3) Before I left the hospital, my lactation consultant recommended I use a plastic shield to nurse, which is a small plastic device that eases the breastfeeding process and typically alleviates the pain associated with it. At first I wasn't too keen on the idea, but within a day or so, I realized how much easier it made things. She said that she didn't think I'd have much success without it, so she in fact gave me two shields and told me to use them as long as I needed to do so. I did away with them after about 3 weeks, but I never really experienced the excruciating pain and suffering that goes along with those first few weeks of nursing because of them. I understand that most baby books discourage any shield use at all, but lucky for me, I had an open-minded consultant. Don't know if she considered the fact that I was going to have to contend with Lupus as well as the newness of nursing, but whatever her reasoning, I'm glad she was understanding.
4) At Deirdre's two week doctor's appointment, I mentioned that she had slept 7 hours during the night on several occasions, and figured we'd get our hand slapped for not waking her up (per the recommendation to feed a newborn every 3-4 hours.) Much to our surprise, the doctor said that since Deirdre looked healthy, was gaining weight, and seemed perfectly happy, she encouraged us to let the little gal sleep through the night as often as possible. Well-rested parents make for happy, healthy parents, she said, so we ran with it. I hear through the grapevine that not all physicians are as supportive, so I'm glad I'd shared with her the fact that I had Lupus.
In addition, my doctors have called in prescriptions and made medication changes over the phone, saving me multiple trips to the doctor. They've been quick to see me when I did need to go in, and I've appreciated their attentiveness. Seems like everyone involved has the same goal in mind: keep that nasty Lupus quiet, and all will be well. So far so good!
Monday, December 29, 2008
I've never been very good at letting people tell me what to do. In fact, whenever possible, I try to be on the opposite side of things - giving the orders rather than taking them. But when you're sick, you often find yourself in a rather vulnerable state, forced to listen to the advice and opinions of those around you. You try and remember that others are trying to help, but sometimes you simply can't stomach one more suggestion on what you should (or could) be doing to stay healthy.
Over the course of my pregnancy, many kind and caring people reminded me not to do too much, particularly when I had a touch of sciatica toward the end. In that case, I welcomed advice from those who had suffered from it before, primarily because I was desperate to find a way to alleviate the pain. However, I discovered that I was much more receptive to the advice when it involved a proactive, positive approach to my problem rather than a restrictive, conservative view. Let me explain:
When I asked for advice on the sciatica - I got one of two responses. People either said, "try to be more conscience of the way you're moving, and concentrate on eliminating movements that aggravate the nerve" or they said, "stay off your feet and don't do anything." You can guess which suggestion I gravitated toward (the former, of course) - and here's why:
It gave me something to think about and work toward, as if I could control the pain if I just focused on it. It made me think I could still be productive despite my ailment, giving me hope and building up my mental strength and courage to combat the problem.
The latter just made me feel like a victim, as if I was at the mercy of the pain and there wasn't anything I could do but sit back and let the pain get the best of me. Of course, the advice to just sit and do nothing wasn't wrong - it just wasn't encouraging. And don't we all need a little encouragement when we're under the weather?
Giving credit where it's due - my Dad was one who gave me the encouragement I needed during the worst days of my sciatica. Thanks, Pop, and keep those positive thoughts coming!
Wednesday, December 24, 2008
Monday, December 22, 2008
In a post from last week, I touched on the fact that in the beginning of my bout with Lupus, I refused to use a daily pill box because I didn't want to admit that I was really sick and in need of multiple meds. Based upon this quote from Nicole Paxon, who was diagnosed with Lupus at the age of 12, it seems like "denial" is a common attribute for Lupus patients.
Her advice? "Be strong, listen to your doctors, and accept it - the longer you're in denial, the longer it will take to get the (the disease) under control. "
Enough said, don't you think?
Friday, December 19, 2008
Finding the most appropriate medication regimen for patients is a difficult task. Patients often require multiple medications placing them at risk for drug-drug interactions (DDIs), a situation that occurs when 1 of a combination of drugs alters the effect of another drug. Drug-drug interactions may result in decreased therapeutic benefit, adverse effects, or patient harm.
The frequency of potential DDIs was estimated to be from 6.2% to 6.7% per year using prescription drug claims data from 2 large health plans. Another study estimated 374,000 plan participants were exposed to clinically important potential DDIs utilizing pharmacy drug claims data for nearly 46 million participants in a pharmacy benefit management organization over a 25-month period. Non-prescription medications, herbal preparations, and complementary medications also contribute to patient polypharmacy (the use of multiple medications) and the potential for DDIs.
DDIs contribute to patient morbidity and may cause emergency department visits, hospitalizations, and re-admissions.[6,7] Examples of patient morbidity caused by DDIs include gastrointestinal (GI) bleeding, renal dysfunction, electrolyte imbalance, hypertension, hypotension, bradycardia, arrhythmia, drug toxicity, and decreased drug effect.[6-8]
Removal of drugs from the market will eliminate the risk of DDIs in certain situations. Unfortunately, the elimination of all risk is impossible due to, in part, the lack of suitable drug alternatives. Many clinicians have witnessed patient harm caused by DDIs, and many interactions that have caused hospital admission for toxicity could have been avoided. However, in many cases knowledge of DDIs is lacking.[15,16]
DDI Risk Factors to Identify in Practice
The most complex patients are at highest risk for DDIs. One should consider the potential for DDIs at all steps of the drug-delivery process. In a retrospective review of patients admitted to the emergency department, patients taking 3 or more medications or patients who were 50 years or older taking 2 or more medications had a considerable risk for DDIs. Furthermore, an increasing number of medications administered further increased the risk for adverse effects. Patients taking 2 medications had a 13% risk while patients taking 5 medications had a 38% risk for DDIs. Patients taking 7 or more medications had an 82% risk of developing adverse drug interactions.
Advanced age is an additional risk factor for DDIs. Aparasu and colleagues found that the risk for DDIs increases significantly after 44 years of age and is greatest for patients over 74 years of age. The need for multiple medications often arises with advancing age that may further the risk for DDIs. Almost 25% of the elderly outpatients referred to a diagnostic clinic in The Netherlands for decreased cognition, functional dependence, or both who were taking more than 1 medication were found to have potential adverse effects or decreased drug effect possibly due to a DDI. In general, when multiple medications are prescribed in the elderly population, the risk for DDIs increases exponentially.
Other patient-related risks for DDIs noted below, include very young age, female sex, genetics, decreased organ function, use of a medication having a narrow therapeutic range (eg, warfarin, digoxin, and cyclosporine), major organ impairment, metabolic or endocrine risk conditions (eg, hypothyroidism, hypoproteinemia), and acute medical issues (eg, dehydration).[4,6,17-19]
Patient-Related Risks for Drug-Drug Interactions
Acute medical condition (eg, dehydration, infection);
Age extremes (ie, the very young and the elderly);
Decreased renal/ hepatic function;
Metabolic or endocrine condition (eg, obesity, hypothyroidism);
Multiple medication use;
Narrow therapeutic range of medication; and
Non-patient factors may also affect the risk for DDIs. For example, an increasing number of clinicians or pharmacists involved with the dispensing of medication may increase the risk for DDI. Risk may also increase when computer alerts are too frequent or too infrequent. Pharmacy work flow, and work load also may influence risk of DDIs.
DDIs should be considered at each step of the drug-delivery process. All members of the healthcare team should consider the risk for DDIs when a new medication is prescribed, dispensed, or administered to a patient.
Wednesday, December 17, 2008
Well - best intentions being what they are, I found myself out shopping the other morning, without - you guessed it - my Snap 'n' Go. Little Deirdre was an absolute doll during the outing, never making a peep as I lugged her and her car seat in and out of the car about a half a dozen times. I didn't notice any pain at the time, but later that afternoon, I could barely move my wrists they were so sore. On top of that - I'd forgotten to take my dose of prednisone that morning - so I was in some serious pain! It only lasted only a day, but since then, I've made some changes in the way I remind myself to take my medication. It's inexcusable to miss a dose like a did. I mean, come on - it's working like a charm. Why should I work against myself? And we've rearranged the strollers so that I'll be sure to have one the next time I'm out. I'm just glad little munchkin didn't know the difference!
Here are the fool-proof ways I plan on remembering to take my medication each morning:
1) Use a daily pill box: When I was first diagnosed, I was vehemently opposed to using one of these. I thought it was an indication that I was old, decrepit, and sickly. While I was guilty of the latter, I soon realized that the best way not to be categorized as such was to take my medication when and how I was supposed to. The pill box only made my efforts that much easier. So - it's back to the pill box I go.
2) Write it down: Although my most recent infections probably warrant a couple of entries on my Chronic Control spreadsheet (which I haven't kept in over a year because I've been symptom-free), I think at least I'll start by jotting down the times I'm supposed to be taking my medication. Because I take the antibiotic 4 times a day, in addition to the other medication that I take twice a day, I'm in serious need of a reminder as to whether or not I've taken the appropriate pills. So, I wrote the following on the outside of the prescription bottle, "6am, 12pm, 6pm, 12am", denoting the approximate times I need to take a pill. Each day, when I take the medication, I make a slash (or some other designation) through the coordinating time, thus proving to myself that I've taken the pill (because in an hour, I'm not going to remember!) I started with a forward slash the first day, then used a backward slash the second day. I'll continue doing that until I've made an asterisk, and then maybe I'll circle it, underline, etc. until the medication is complete. It's working well so far - I have yet to miss a pill under this system. AND most importantly, the infection is gone...so I know I'm doing something right!
3) Take medication at the same time everyday: This dovetails into #2. And while you're supposed to do this no matter what medication you're on, I find that if I commit to a specific time to take my pills, I tend to remember to take them. They say it only takes 14 days to form a habit...but since I'm only on the antibiotic for 10 days - I need all the help (tricks) I can get!
Here's a link for more tips on remembering your meds. Enjoy!
Monday, December 15, 2008
Check out his handiwork below - the subject matter is pretty cute!
Friday, December 12, 2008
Wednesday, December 10, 2008
Ever thought about the difference between saying, "I have a chronic illness" and "I am chronically ill"?
I never gave it much thought either, but something I read (I can't recall what exactly) caught my eye in a recent Arthritis Today issue that made me contemplate the difference and how the two phrases relate to my relationship with Lupus.
For the first few years after I was diagnosed, I always referred to the disease as "my Lupus." If someone asked how I was feeling, I'd say, "my Lupus is crummy" or "my Lupus is fine today." If I couldn't make plans because I was flaring, I'd blame it on the fact that, "I don't know what my Lupus is going to do today." It was as if the disease and I were one integrated unit, joined at the hip for the foreseeable future. I was unable to separate myself from it. It's no wonder why - I had to consider the affects of the disease with every move I made. Literally. And when you're flaring, there's hardly anything else you CAN think about. So at that time, I definitely thought of myself as "chronically ill" - overwhelmed by the disease, and consumed by its presence in my life.
But fast forward to today, where the disease is quiet and relatively trouble-free. It's still a consideration, of course, since I still take medication for it twice a day and have to negotiate my nap and activities to make sure it stays dormant. But I rarely talk about "my lupus" anymore. When I do, it usually refers to a time in the past, a time when Lupus played a much larger role in my daily thought process. And it's not just because the disease isn't active; it's because I've been able to separate myself from it - becoming my own person again, despite Lupus.
Today, I certainly don't think of myself as chronically ill. Sure, I have Lupus. But Lupus doesn't have me.
Monday, December 8, 2008
Even though I've already started tapering off my dosage of prednisone per doctor's orders, my obstetrician (who treated me for the mastitis) encouraged me not to rush it, just for the sake of preventing infection. She said the last thing I want is joint pain on top of the mastitis, and she's right. Let's just hope this 2nd round of antibiotics does the trick. She also mentioned the idea of doing intravenous antibiotics if the oral medication doesn't work. Thankfully, one of my girlfriends in Lupus group recently shared with us her experience with IV antibiotics, so at least I was prepared for the suggestion. Had I not heard my girlfriend's story, I would have thought it was a bigger deal than it is!
Speaking of a big deal - it was a big ordeal to get an appointment with a doctor at all. My first call was to my obstetrician, primarily because she treated me for the first infection. I knew that after 6 weeks, I was no longer technically under her care, but I thought I'd try anyway. As expected, her office encouraged me to check with my regular gynecologist first, but insisted that if I wasn't able to be seen in a timely fashion, I should call back. Very accommodating, but it still meant I had another call to make. I called my gynecologist next, left a message with the triage nurse, and waited for a return call. When I heard back, they refused to see me, based upon the fact that they hadn't delivered the baby or seen me in over a year. (Well, duh...I've been a little pre-occupied with a 9-month pregnancy, thank you very much.) Their suggestion was that I go to the nearest emergency room, a trip I had no intention of making if I could help it. I begrudgingly thanked them for their time and hung up. I thought about calling my rheumatologist, but decided on my primary care physician, whose office is right around the corner from my house. This time, I left a message with the receptionist and waited for a call back from the nurse. With that return phone call, it was suggested that I call my obstetrician, since that was the doctor who treated me the first time. Ugh! Back to square one!
Thankfully, though, I hadn't become too frustrated in the process and since my OB's office had already given me the go-ahead to call back, that's what I did. My dad reminded me that the fact that I persevered in making all of these calls, even up to this point, was a sign of real progress on my part. Years ago, I might have just thrown my hands up and stopped calling. Well - not this time. I called my OB again, and they were able to see me that same day. Thus, I'm now on the antibiotic, which has already reduced my fever and given me a little more energy. I'm still feeling slightly under the weather, but I'm on the mend for sure. Here's hoping the infection is gone soon!
Friday, December 5, 2008
According to Stewart B. Leavitt, MA, PhD, editor of Pain Treatment Topics and author of the report, "our examination of the research, including 22 clinical investigations of patients with various chronic pain and fatigue syndromes, found that these persons almost always had inadequate levels of vitamin D. When sufficient vitamin D supplementation was provided, the aches, pains, weakness, and related problems in most of them either vanished or were at least helped to a significant extent."
The report, "Vitamin D A Neglected 'Analgesic' for Chronic Musculoskeletal Pain," was peer-reviewed by a panel of 8 experts and includes the following important points:-- Vitamin D is a complex nutrient that functions as a hormone to benefit numerous body tissues and organs, including bones, muscles, and nerves.
A surprising majority of persons in many parts of the world, including the United States, do not get adequate vitamin D from sun exposure or foods. Why such deficiencies are associated with pain in some persons but not others is not always known.
The currently recommended adequate intake of vitamin D up to 600 IU per day is outdated and too low. According to the research, most children and adults need at least 1000 IU per day, and persons with chronic musculoskeletal pain would benefit from 2000 IU or more per day of supplemental vitamin D3 (also called cholecalciferol).
Vitamin D supplements have a highly favorable safety profile. They interact with very few drugs or other agents, and are usually not harmful unless extremely high doses such as, 50,000 IU or more are taken daily for an extended period of time. Vitamin D supplements are easy for patients to self-administer, are well tolerated, and typically cost as little as 7 to 10 cents per day.
However, Leavitt stresses that vitamin D should not be viewed as a cure for all pain conditions and in all patients. It also is not necessarily a replacement for other pain treatments. "While further research would be helpful," he says, "current best evidence indicates that recommending supplemental vitamin D for patients with chronic musculoskeletal pain and fatigue disorders would do no harm and could do much good at little cost. It should be considered by healthcare providers for their patients early in the course of pain management."
Wednesday, December 3, 2008
Monday, December 1, 2008
"Pain therapy for osteoarthritis is truly an unmet medical need, and there are very few effective medications to address it. Currently available medications cause side effects or have the potential to cause drug dependency," Dr. Lane said.
"These were patients who were on their way to joint replacements," she said. Tanezumab was effective in reducing pain at all doses, and the effect was maintained through the course of the study, she said.
"Any neurological problems were transient, and nobody dropped out of the study because of sensation changes," Dr. Lane said.