Monday, June 30, 2008
Friday, June 27, 2008
What could it be, this word that I disdain so much? I can hardly say it. But nonetheless, here it is, the worst word in the world of Lupus lingo....drum roll please...
Terrible, huh? Don't know what it means? According to http://www.dictionary.com/, here's the definition:
Idiopathic: Of, relating to, or designating a disease having no known cause.
Just what you wanted to hear, right? I've had fevers, rashes, swellings, and a whole host of other symptoms that have been termed "idiopathic". I've come to realize just how thankful I am when I walk into the doctor's office, lay out my symptoms on the table, and the doctor replies, "I know just what that's from. It's because of x, y, or z.
The worst? When there's no explanation, no reason, no cause for the problems you're experiencing. You certainly don't have to have Lupus to experience the pain of an idiopathic symptom. I have friends who struggle with infertility (for no apparent reason), mysterious leg swellings, or random bumps, bruising, or the like. I even had a friend who had to temporarily postpone his liver transplant surgery because his blood tests were showing "idiopathic" results. I say a big, fat UGH! to all idiopathic symptoms everywhere.
May you have an idiopathic-free weekend!
Thursday, June 26, 2008
Welcome to Germany.
Life with Lupus isn’t what you planned for nor is it anything you know about. Yet here you are, stuck with a confusing, chronic illness that can debilitate, inflict pain, and make you suffer miserably. What are you going to do? Kick and scream and fight your way until you don’t have the disease anymore? I tried this tactic early on in my struggle with Lupus. I downright revolted, refusing to give in to the disease. I tried to deny the fact that I even had it, living with complete disregard to its limitations. It was like speaking Italian in Germany, and it wasn’t very productive. Unlike the benign mistake of speaking the wrong language, though, Lupus was a potentially fatal, chronic illness, and I was kicking and screaming myself to death.
Wednesday, June 25, 2008
1. Morning stiffness in and around joint lasting at least 1 hour before maximal improvement
2. Arthritis of 3 or more of the following joints simultaneously: right or left PIP, MCP, wrist, elbow, knee, ankle, and MTP joints including soft tissue swelling or fluid
3. Arthritis of hand joint including swelling of wrist, MCP, or PIP joint
4. Symmetric involvement of joints on both sides of the body
5. Rheumatoid nodules over bony prominences, or extensor surfaces or in juxtaarticular regions
6. Positive abnormal serum rheumatoid factor
7. Radiographic changes including erosions or bony decalcification localized in or adjacent to the involved joints MTP = metatarsophalangeal; PIP = proximal interphalangeal; MCP = metacarpophalangeal joints.
Tuesday, June 24, 2008
Here's the skinny on Prednisone:
Dosage: Various. I've had 5mg tablets and cut them in half (for 2.5mg dosages), and I've had 20mg tablets and taken 3 0r 4 of them at a time. It just depends on the activity of your disease. My doctor is a big proponent of pulse therapy - if I'm on a 20mg dose every day, after a period of a few weeks or months (or however long it takes before my body shows signs of stability), my doctor will taper the drug as follows: 20mg one day/15mg the next. I'll do that for 2 weeks (or whatever time frame he specifies), and then I'll go down to 20/10, 20/5, and then finally 20/0mg.
At each interval decrease, there's usually an adjustment period where your body has to become accustomed to the lower dose of prednisone. In fact, you may experience increased joint pain, swelling, or your other typical Lupus symptoms as you decrease your dosage (typically known as withdrawal). My doctor's rule of thumb was this: if after the second or third day of tapering, you're continuing to feel worse, your body may not be ready for the lower dosage. If you're tapering down, feel free to ask your doctor when and/or how you can determine if you've gone too low. The last thing you want to do is continue tapering if you're not ready for it! You have to be the one to alert your doctor though - as you may not have an appointment schedule until after it's too late.
Known side-effects: I'll put an asterisk by those symptoms that I've experienced. These are all very common, but should you experience any one of the symptoms listed below, it should be communicated to your doctor. Here's a great link to a more in-depth look at the known side-effects.
*1)Swelling of the face, often referred to as "moon face" or "chipmunk cheeks"; some patients feel ugly and say that they do not recognize themselves in the mirror. Remember, these changes are reversible. 2)A hump on the upper part of the back; this hump is made of fat, not bone.
3)Bloating or swelling of the abdomen.
4)Weight gain; prednisone may cause a great increase in appetite. Weight gain can be controlled by a low calorie diet, by exercise and by avoidance of salt. Avoid salty foods and do not add any salt.
*5)Stomach problems - ex. Ulcers and/or Heartburn; to ease the burning, try taking prednisone with food. This problem may require anti-ulcer medication.
*6)Mood changes; sometimes the change is for the better. However, depression may be made worse by prednisone.
*7)Insomnia; patients may have difficulty sleeping at nights.
*8)Shakiness; patients may have feelings of being "hyper: or that "things are running fast inside my head".
*9)Weakness of the thigh muscles; patients may have difficulty in climbing stairs, getting out of the bath or getting up from a chair or toilet seat.
*10)Interruption of the menstrual cycle; periods may stop altogether.
*11)Increased risk of infections; patients may have more infections including some caused by germs that the body is normally resistant to.
*12)Acne; don't hesitate to seek help from a dermatologist on this one. Many prescription topical drugs can eliminate the breakouts completely.
Long term side-effects
*12)Easy bruising of the skin; bruising from prednisone use often happens without any obvious injury and may require that blood clotting ability be checked by the physician. 13)Stretch marks; these may occur on the upper body, the arms, the abdomen and the thighs. 14)Excessive growth of body hair; this hair growth usually appears on the face and will stop when prednisone is decreased. 15)Cataracts; these are a cloudiness of the lens of the eyes that cause a decrease in vision. Occasionally, surgery may be required. 16) Osteonecrosis; this condition means "dead bone" and most frequently affects a bone in the hip joint called the femur (other bones may be involved as well). Osteonecrosis is becoming a more important cause of pain and disability in lupus patients. If this problem is found early, worsening of the process may be prevented by performing a surgical procedure. In many patients, the damage caused by osteonecrosis eventually comes to a stop. In some patients, where damage to the bone has been severe, an artificial joint may be needed.
*17)Osteoporosis; this results from a loss of calcium from the bones and often leads to fractures, particularly in the spine. These may be a major cause of pain and disability. However, this process is at least partly reversible if prednisone can be stopped. If prednisone must be continued, this side effect may be decreased by exercise, by eating foods rich in calcium and by taking extra calcium and vitamin D as prescribed by your physician. These preventive measures should be started as soon as a high prednisone dose is begun.
*18)Heart attacks; several factors (including smoking, high blood pressure and high blood sugar) combined with long term prednisone treatment may lead to a narrowing of the blood vessels of the heart and early heart attacks. This risk can be decreased by maintaining a reasonable weight, controlling blood pressure and, most importantly, not smoking.
Administering: I always took prednisone with a small snack, preferably something of substance. (Taking 30mg of prednisone in the morning along with a donut is NOT a good idea!)
Cost: Very inexpensive. When I have a prescription filled, my pharmacy sometimes opts not to run it through my insurance - because a cost to me (sans insurance) for a month's supply can be as little as $3!
Limitations: Other than trying not to be too clumsy while on prednisone (because you'll bruise so easily!), my doctor found it necessary to prescribe a medicine like Fosamax or Actonel to help with the osteoporosis brought by prednisone. These drugs slow bone loss while increasing bone mass, and have limitations of their own: they must be taken 30 minutes before you eat or drink anything (other than the water you take with the pill); must be taken with 6-8oz of water; you cannot lie down for 30 minutes after taking your required dosage; and you cannot be pregnant or plan on becoming pregnant on either of these drugs. In fact, my doctor was most comfortable stopping these drugs at least 6 months before I planned on even thinking about pregnancy. Guess one is never sure how long these types of things stay in the body.
In order to monitor my bone density, I had a DEXA bone scan every year or two, and unfortunately with each scan, an increase in bone loss was revealed. However, after spending the last 1 1/2 off of prednisone completely, and having been on low dosages for the year or two prior (because of the effectiveness of drugs like plaquenil and cellcept that seemed to work quite well for me), my bone density has actually improved! It's not what it once was - but I'm thrilled to say that it's at least stabilized.
That's it for Prednisone - Next Up: Plaquenil
Friday, June 20, 2008
Wednesday, June 18, 2008
When you’re really sick, maintaining an animated discussion at the doctor's office, full of provoking questions and answers can seem like an impossible task. If you feel as though this inability is lessening the effectiveness of your appointments, consider taking someone in with you. It’s important that you choose your companion carefully, as you don’t want to feel inhibited by their presence, nor do you want them to be unnerved by the detailed discussions that might occur. Once you have the right person by your side, however, you’ll be reassured to know that someone else is there to listen, interpret and, if you choose, speak on your behalf.
And here's another rather amusing, but true, example of how beneficial it can be to have a second set of ears present during a doctor’s visit: During a recent check-up, a friend of a friend complained to his doctor of digestive trouble. The doctor recommended he make a certain addition to his diet, to which he adhered for the next six weeks. He went back for a follow-up appointment, this time accompanied by his wife. Having stayed apprised of her husband’s dietary changes, she immediately asked the doctor how much longer her husband needed to eat the eight plums a day he had prescribed. “Eight plums!”, the doctor exclaimed. "I never said anything about eating eight plums." My friend replied, "The last time I was in, I told you I was having trouble with constipation, and you said, 'Why don't you try eight plums a day'". The doctor just shook his head. “I said a plum a day!” Who knows if my friend's wife would have correctly heard the doctor at the previous appointment, but my bet is her presence would have helped!
Tuesday, June 17, 2008
Even with all of the not-so-great things that come with pregnancy - the weight gain, acid reflux, and food restrictions, along with some of the special measures I've taken to account for Lupus -I have very few complaints. In fact, I was reminded the other day just how great the aches and pains of pregnancy can be, compared, of course, to those of a Lupus flare.
A few days ago, I went to lie down on the bed for my afternoon nap, and my back started to ache. Not arthritic, chronic, burning pain like Lupus would bring - just a regular old back ache - most likely brought on by the introduction of this little belly of mine. And you know, as I rolled from one side to the other to alleviate the pain, I thought - how wonderful it is to be able to remedy the pain so quickly, so easily, so effortlessly. It was a simple strain that had a simple answer, and that's all there was to it. There weren't any swollen knuckles, enlarged glands, or low grade fevers to accompany the pain; there was no concern as to whether or not my evening meds would be able to alleviate the hurt enough for me to sleep. In fact, I had no worries at all. I actually felt relieved and even a little thankful that after years of fighting the pain and suffering of Lupus, I, too, could experience the typical aches and pains of pregnancy, with no strings attached. Just me, feeling what any other pregnant woman might feel at this point. How great. How refreshing. How normal.
Monday, June 16, 2008
PARIS (Reuters Health) Jun 12 - Nearly three-quarters of patients who present to a rheumatology clinic have a vitamin D deficiency, Irish researchers reported here at the European Union League Against Rheumatism (EULAR) 2008 meeting.
Dr. Muhammad Haroon and associates at South Infirmary-Victoria University Hospital, in Cork, assessed the prevalence of vitamin D deficiency in all new patients consecutively seen at their institution's rheumatology clinic between January and June, 2007.
Results showed that 162 patients (70%) had hypovitaminosis D, 26% had severe hypovitaminosis D, and 21% had secondary hyperparathyroidism.
Severe vitamin D deficiency was present in a significant percentage of patients in all diagnostic categories including patients with inflammatory joint diseases, soft tissue rheumatism, osteoarthritis, uncomplicated musculoskeletal backache, and osteoporosis.
Chronic severe vitamin D deficiency increases the risk of osteoporosis and osteomalacia, while a mild to moderate deficiency may contribute to non-specific musculoskeletal/soft-tissue complaints, he said.
Friday, June 13, 2008
The vacation was great, and we drove (about 7 hours each way) because flying at this point wasn't encouraged by the docs. We stopped overnight in New York City on the way up, and at the cutest little inn on the way back, breaking up the trip into very manageable chunks. I didn't do one ounce of driving, though, so I don't really know what I would have considered "unmanageable". Johnny was great about stopping for Momma to go weewee, get a snack, and the like. The driving portion went pretty quickly, and we had plenty of time for conversation, games, and reflection . We don't really get bored with one another; it seems we always have something to chitchat about.
During the week, I had an opportunity to reflect on the past year. I can tell you one thing - I never thought this is what 34 years old would look like. I definitely didn't think I'd be on baby #1 (maybe my third, but not numero uno); I didn't have plans of being happily retired, and I didn't know Systemic Lupus would be a household name. Goes to show, you never know what's in store.
And to think that I am so perfectly content with life right now! For years, I struggled to control my life's plan down to the last detail. I viewed life in general as something over which I had complete control. I thought nothing could happen to me without my endorsement first. So when Lupus hit, I thought I had a say in whether or not it stayed around. This misperception caused me much frustration and difficulty, not to mention extreme pain and suffering, none of which I wanted any part of.
But over time, I began to realize that the only part of my life I was in charge of was choosing how gracefully I accepted the events that transpired in my life, good and bad. In fact, if I gave up this unrealistic power I was so anxious to hold onto, maybe I would start the healing I was so desperate to receive.
Which leads me to my six-word memoir meme...a blog challenge that one of my faithful readers and favorite bloggers, dc at Lupus Pie, tagged me for. Check out her lupus/infertility blog when you get the chance - she's great!
The idea for this meme was prompted by the book "Not Quite What I Was Planning: Six Word Memoirs by Writers Famous & Obscure," by Larry Smith & Rachel Fershleiser. In the book, the writers recount the infamous tale that Hemingway once bet ten dollars he could sum up his life in six words. Hemingway's words were, "For Sale: Baby Shoes, Never Worn." He won the bet.
Sorry if I just broke all the rules (by listing 18 total words!), but I'm an aspiring writer, what can I say?
Here are the official rules for the six-word memoir meme:
1. Write your own six word memoir.
2. Post it to your blog (including a visual illustration, if you so choose).
3. Link to the person who tagged you in your post, http://www.lupuspie.blogspot.com/ and to this original post http://bookbabie.wordpress.com/2008/02/18/6-word-memior-meme/, so we can track it as it travels across the blogsphere.
4. Tag 5 more blogs with links.
5. Don't forget to leave a comment in the tagged blogs with an invitation to play.
Here are my tags. Can't wait to see your cleverness come alive:
Thursday, June 12, 2008
Wednesday, June 11, 2008
Tuesday, June 10, 2008
Friday, June 6, 2008
Major Organ Involvement Common in Children With SLE
Medscape Today, Rheumatology
NEW YORK (Reuters Health) Apr 23 - Most children who have systemic lupus erythematosus (SLE) have a variety of serious clinical manifestations, Canadian researchers report in the April issue of the Journal of Pediatrics.
"In the largest single-center study of pediatric SLE, we found that the majority of patients with pediatric-onset SLE have a severe disease with evidence of major organ involvement," senior investigator Dr. Earl D. Silverman told Reuters Health.
Dr. Silverman and colleagues at the Hospital for Sick Children, Toronto, analyzed data from 256 patients who were diagnosed between 1982 and 2005. The mean age at diagnosis was 13.1 years and the most common symptoms at presentation were fatigue, fever and weight loss. Patients were followed for a mean of 3.5 years.
The most widespread clinical manifestations were arthritis (67%), malar rash (66%), nephritis (55%), and central nervous system (CNS) disease (27%). Children with both renal and CNS disease had the highest disease activity scores at diagnosis. However, by 1 year, these scores had normalized and were similar to those of the total group. Patients who developed renal and CNS disease after 1 year also had higher SLE activity scores at diagnosis.
Overall, patients with these conditions had a greater frequency of damage than patients without major organ involvement.
Dr. Silverman pointed out that "with appropriate treatment most patients do well and only a minority have permanent damage." In fact, he and his colleagues conclude that the outcome of pediatric SLE "has improved significantly since the initial reports."
At least there's a little good news sprinkled in there!
Thursday, June 5, 2008
In 2004, I resigned from my full-time, management position to work part-time from home as an associate in the same department of the company. It was an entry-level job I moved into, but my health was deteriorating at such a fast rate that my body couldn't tolerate the long hours or demanding schedule of my job as manager. At the pace I had been going, I was never going to be healthy enough to bear children. Contemplating adoption even seemed out of reach, since I could barely care for myself, much less another little life. The day I started my new position, I knew I was laying the groundwork for my future; some day, down the road, I was going to enable myself to become a mom.
The second stage of my baby preparation came two years later, when in 2006, I turned in my final resignation to the company and decided to focus on getting as healthy as possible. My part-time position had proven that the less I worked, the better I felt, so my husband and I opted to explore the concept that perhaps not working at all would mean reaching optimal health. Thankfully, we were in a financial position that allowed me to quit my job, and I had reconciled within myself any doubts I had about losing my identity along with a career. Reassured by the fact that this major, life changing experience would bring me closer to my future of living well with Lupus, I knew it was the right thing to do. And still included in my definition of "living well" was the prospect of having children down the road.
Stage three was the easiest: In 2007, my doctor and I took steps to prepare my drug regime for the prospect of pregnancy. I was tested to see if I could take Imuran, which at the time, my doctor felt was the #1 alternative to CellCept (which was and is not recommended during pregnancy.) Although my test results revealed that I was a candidate for Imuran, my doctor changed plans and suggested that we use Plaquenil instead, deciding that it was the best choice for my condition and circumstances. I added Plaquenil to my regime on June 1st (taking it along side CellCept), and then a month later, I stopped CellCept altogether. I was nervous leading up to the actual day I would stop my wonder drug, but I knew that this was part of my preparation. If the swap didn't go well, I'd know Baby plans would need to be put on hold.
As it turned out, I had nothing to worry about. From one day to the next, my body didn't miss the CellCept. Plaquenil seemed to be an adequate substitute (although years before, it hadn't been strong enough to keep my disease under control), and I was one step closer in my baby preparations.
And if you've been keeping up with my blog, you know the rest. Once I waited three months after stopping CellCept, I got the go-ahead from the doctor, and about three months after that, Baby Bun arrived on the scene. There's not one day that I don't feel blessed and honored to be caring this little munchkin. Becoming pregnant wasn't a super-simple process for me, but having experienced nothing but utter happiness for the past 20 weeks, I know that this little life inside of me was worth any sacrifice I might have made along the way. Although I now know they weren't sacrifices, but mere stepping stones.
On the right, Darwin makes sure that all stuffed animals pass his high safety standards: no small pieces, sharp edges, or ill-tasting toys, while at left, Henry tests the stability of the building blocks. Are they wind resistant, sun proof, and can they withstand a pug's snore?
Now I just have to continue my own preparation process by securing daytime, nighttime (or all-the-time!) help for the time after Baby Bun arrives. I've been told that you can never get enough help, but I'm not sure if I should be looking for full-time help (in case I'm very ill, post-delivery), or just part-time help. I know I'll need at least a few days a week where I'm guaranteed to be able to crash for a few precious hours. I won't be any good to BB if I'm not well myself, so I have no plans of pulling any superwoman feats. I know we'll ALL be better off if Mom is well-rested. Wish me luck!
Monday, June 2, 2008
...But I am scared of the dark; dingy, cavernous basements; and mice.
Afraid: Chest X-Rays (that reveal pleural effusion!)
Afraid: Having a medication mysteriously stop working