A big sigh of relief...

Although we're not completely out of the woods yet, I think I can safely say that for the duration of my pregnancy, I will have full maternity benefits through my insurance company. Whewee!!!

When I switched from COBRA to private insurance January 1, 2008, the stipulation was that Blue Cross/Blue Shield had a 10-month waiting period for maternity coverage...which would mean that if I became pregnant anytime during those 10 months, Johnny and I would be on our own to cover the expenses. Although we knew it was risky (and potentially expensive), Johnny and I decided to keep trying for a baby - we didn't want to postpone our plans for almost a year and we figured odds were that I wouldn't get pregnant right away.

Well...Bun was apparently anxious to arrive, because later that month, I DID become pregnant. Around this same time, I realized that my insurance application had been processed incorrectly - it was overlooked that I had checked the little "maternity coverage" box. I received my first month's invoice, and no maternity coverage was listed. (As I understood it, you pay the extra fee for maternity coverage during the 10 months in which you're waiting to be covered, so I fully expected to have a line item on the invoice that said something like, "Maternity coverage - pending 10 months." Since we were still trying (and even though Bun was probably saying, "Hello, I'm already here!), I was anxious to make sure that the 10-month countdown started as soon as possible. I spent several phone calls trying to make sure that the mistake would be corrected, and that January 1st would be the start date for the countdown.

Around the middle of February, I found out I was pregnant. But, I still hadn't squared away the insurance. I had my first doctor's appointment and got a due date of October 20...10 measly days before I assumed my insurance would kick in. We prepared ourselves for the fact that we would have to incur the cost of the entire pregnancy, delivery and all, but I thought I'd make one more call to the insurance company to find out when the 10-month waiting period would be over. I had even written a letter mentioning the mix-up in the application process, and asking if perhaps an exception could be granted to move up the date of maternity coverage, for all of the hassle I'd been through. (It really was a hassle - I had to prove that the box had been checked by getting the original copy from my insurance broker, faxing it in, following up with the appeals department, etc. I thought the least BCBS could do was cover my delivery expenses!)

Turns out, I didn't even need to beg. I called up and asked about my maternity coverage, bracing myself to hear a coverage date of November 1st. The lady on the phone said, "According to your file, you've had maternity coverage since January 1st." Wooooohoooooo! I managed to remain calm on the phone, and asked about the 10-month waiting period. She said there usually was, but mentioned that she had a memo from the company dated something like 12/18/07 stating that going forward, if maternity coverage is requested at the onset of an application and if the applicant is not pregnant on that first date of coverage, coverage can begin immediately. What fabulous news!!!

Johnny and I were ecstatic, but we were wary. We just didn't want to bank on the fact that the expenses would be fully covered, if in fact there had been a mistake. But after almost 25 weeks of pregnancy, and more than a half a dozen sonograms, doctor's appointments, and blood tests galore, I think it's safe to say that I am fully covered, based upon the absence of charges from the insurance company. Oh, there are plenty of ancillary charges for all of the tests they run, but nothing compared to the cost of the procedures without insurance.

Someone was really watching out for us during this time...someone who wanted Bun to come into this world just as badly as we did. Bun - you would have been worth any dollar amount in the world...but at this point, I'm pretty glad you're covered!

Pencils, Down!

Or should I say, Fingertips, Off!

That's right - I put the finishes touches on the final chapter of my book this past weekend. After a year of talking about writing a book, and another year of actually applying myself, I've completed the first draft of "Despite Lupus: Living Well with a Chronic Illness." I'm sure much of what I've written will get slashed with a big red pen once it goes to an editor, but I'm feeling pretty good about it right now.

The goal I set last summer was to finish it sometime in the month of June 2008 - and I can proudly say I made it! I worked somewhere in the neighborhood of 8-10 hours a week on it...some weeks more, some weeks not at all. I still have a handful of stories, examples, and quotes that I never used, but they may come in handy once the rewrites begin. For now, I'm going to bask in the glory of my completion. If you need me, don't look for me in front of the laptop. I'm taking a break!

And if any first-time authors have any advice as to whether or not I should self-publish or seek out an agent in order to sign on with a publishing company, I welcome your input.

My Definition? Idiotic.

There are alot of rather unsavory words in the English language, most of which I need not mention here. However, there is one particular word that I feel is the worst of the bunch. I'd never heard of it before being diagnosed with Lupus, but thankfully, it's not thrown around all that often.

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...

Idiopathic.

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!

Welcome to Germany

A friend of mine shared the outline of this story with me a couple of years back. Since then, I've adapted it to fit my life with Lupus. Read on and see if it rings true for you!

A young woman decides she’d like to spend time traveling abroad in Italy. She researches all of the right places to visit and then buys her plane ticket. She takes a language course in Italian to become proficient and signs up for a cooking class so that she can appreciate fine Italian cooking. She reads up on the great works of Italian art, culture, and history, becoming somewhat of an aficionado in all things Italian. She boards the plane, and settles in for her much anticipated trip abroad. She dozes off, and wakes up as the plane is touching down. The pilot comes over the loudspeaker, and says, “Ladies and gentlemen, it is my pleasure to welcome you to Germany.” “Germany!”, she exclaims. “Why are we in Germany?” She doesn’t understand how this could have happened. Her plan was to land in Italy, and that is where she should be at this very moment. She knows nothing about Germany: she doesn’t understand the language, has no appreciation for the art or history, and doesn’t like the food. The airlines apologizes for the mistake, but regrettably can offer no further assistance; Germany is where they landed.

What is she to do? She could kick and scream, demanding that the situation be resolved. She could waste valuable vacation time and money trying to right the injustice. She could refuse to leave the airport until she is re-routed to her original destination, no matter how long it takes. Or she could adjust to her surroundings, learn a few things about Germany, and attempt to live well for the short time she has in this new, foreign land in which she’s found herself.

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.

At the time, I thought “living well” was defined by the things that were important to me and that I was proud of: my high-paying job and being in a position of authority; never having to ask for help; contending for the “Multi-Tasker of the Universe” title; pretending not to be afraid of anything. I was convinced that an allegiance to this way of life was paramount for triumph over Lupus.

After my diagnosis, my steadfastness never wavered, but my health did. Eventually, I was forced to either re-evaluate “living well” or stop living at all. Realizing the seriousness of my predicament, I chose to revisit my definition. As such, I uncovered something I never thought existed, a life after Lupus, only better. Much to my surprise, I found that life could be physically, mentally, and emotionally pain-free, if I allowed it to be. I made a choice, a decision that would ultimately affect the rest of my life. Some days, the consequences of my choice seemed to be as painful as the suffering I already experienced. But in other ways, it was the greatest decision I would ever make. I decided to begin living well with Lupus.

I learned as much about the disease as I could. I attempted to speak its language and adjust to its needs, making changes and sacrifices along the way. My life was different, for sure. But no doubt, it was better. After all, I was living well. Before, I wasn’t living at all. The pain, swelling, fatigue, physical limitations, failing organs and deteriorating spirit weren’t allowing me much of a chance to live. I was due for a change.

At present, there isn’t a life’s ambition that I sidestep, avoid, or sacrifice. The world is at my fingertips, and I feel as though I’ve regained a life that I thought was lost forever. That's because today, I’m living well.

A Fine Distinction: RA vs. Lupus

A friend of mine was struggling to determine, based upon her symptoms, whether she had Rheumatoid Arthritis or Lupus. I never thought they were that similar - but upon further research, it looks like there are alot of cross-over symptoms. Come to think of it, for a short period, it was thought that perhaps I had RA rather than Lupus. Take this quick quiz and see if you know the differences between the two:

http://arthritis.about.com/library/quiz/blquizralupus.htm

Also - check out this story, courtesey of Medscape: Today, regarding the subject:

A 52-year-old woman sees her primary care clinician reporting pain and swelling of the metacarpophalangeal (MCP) joints and proximal interphalangeal (PIP) joints for the past 2 months. The pain primarily involves the second and third MCP joints bilaterally, PIPs number 2 though 5, and both wrists, and is symmetrical. She reports morning stiffness that lasts about 45 minutes and experiences afternoon fatigue.

Physical examination is normal including skin, abdomen, and joints other than the MCP joints and PIP joints and confirms swelling and pain there. [1]Examination of the patient's feet is normal. All of the patient's vital signs are within the normal ranges.

Rheumatoid arthritis (RA) must be differentiated from musculoskeletal and other complaints that may be caused by mechanical disease (tendonitis) or osteoarthritis, psoriatic arthritis, or lupus, during the first presentation to the healthcare professional. It is likely that the first encounter during which the patient presents RA symptoms will be at the PCP office, hence recognition of signs of RA in primary care are critical to early detection, treatment initiation, and referral. Symptoms of RA occur symmetrically, as an additive polyarthritis, with sequential addition of involved joints. This is in contrast to the migratory arthritis typical of systemic lupus erythematosus, or episodic arthritis typical of gout. RA must be distinguished from lupus and psoriatic arthritis and from other disorders.

To establish a diagnosis of RA, the patient history, physical examination, and key laboratory and radiographic findings are used. Table 1 shows the clinical criterion for a diagnosis of RA. Four of these criteria must be present for a duration of at least 6 weeks.[2] It is important to also include an appropriate review of systems to diagnose RA.

Table 1. Clinical Criteria for Rheumatoid Arthritis: Four for a Minimum of 6 Weeks
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.

As in the case patient described, the joints most often involved in RA are the PIP and MCP joints of the hands, wrists, shoulders, elbows, knees, ankles, and metatarsophalangeal (MTP) joints. The distal interphalangeal (DIP) joints are typically not affected, and the spine is not generally affected.[2,3] Questioning the patient about morning pain duration is important to gauge RA inflammatory activity; however, it may also be a feature of any inflammatory arthritis. Similar stiffness can occur after long periods of sitting or inactivity, whereas patients with degenerative arthritis have stiffness lasting just a few minutes.

Nonspecific, systemic RA symptoms frequently experienced include primarily fatigue, malaise, and depression. These may precede other symptoms of the disease by weeks to months. Patients most often complain of severe fatigue 4 to 6 hours after wakening. The symptoms may be accompanied by symptoms of anorexia. Functional limitations at work or home imposed by pain or fatigue should be investigated during the patient history. Low-grade fever occasionally occurs (temperature, 37° to 38°C; 99° to 100°F), but a higher fever suggests another illness, and infectious causes must then be considered. Atypical presentations of RA include intermittent joint inflammation that can be confused with gout or pseudogout, proximal muscle pain and tenderness mimicking polymyalgia rheumatica, or diffuse musculoskeletal pain seen in fibromyalgia.

(Adapted from Arnett FC, Edworthy SM, Bloch DA, et al. The American Rheumatism Association 1987 revised criteria for the classification of rheumatoid arthritis. Arthritis Rheum. 1988,31:315-324. Used with permission.)

Prescriptions 101: Prednisone

Ah. Where to start with a drug like Prednisone. There were months when I referred to my steroid dosages as my little magic pills - little because they are the smallest pills I think I've every taken (especially when you have to cut those 5mg pills in half - I was forever losing those little slivers!), and magic because within 30 minutes of taking my dose, the swelling in my joints and the ache throughout my body would temporarily subside. On days when my moon face was in full force, my skin was broken out, or my hands wouldn't stop shaking because of my high doses, I wasn't as big of a fan, but I still know that I couldn't have made it year after year without those magic little pills.

Prednisone seems to be one of the most common drugs prescribed for Lupus - and a lot of people find major success with that drug alone. However, there are tons of side effects, all of which I'll list below, and I've never personally met anyone who has been side-effect free. It's just one of those things that you learn to work around when it comes to this drug - though most doctors are quick to utilize steroid-sparing drugs (like plaquenil or non-steroid anti-inflammatories) because the effects of prednisone are so pervasive. Although I wasn't so lucky in the bone density department due to the high doses of prednisone (60mg +) I had to take in the beginning and at various points in my bout with Lupus, I never suffered from weight gain, ulcers, or blood sugar issues, which can be huge deterrents for people who are on and off prednisone frequently.

For the first 6 years, I was always on some level of prednisone (I finally went off of it for good a little more than a year ago.) I've been on as little as 5 mg every other day and up to 80 mg every single day. There was a long stretch when I couldn't get any lower than 10mg a day, though...anytime I tried anything less, I felt miserable. It was as if I wasn't taking any medication at all. This is one of those drugs that takes a lot of trial and error, and you may find that during one flare - 20mg a day is enough to get you back on track - while during another flare, it may take 50mg to get things under control. That's why it's imperative that you work closely with your doctor to manage the dosage of medication, the side-effects, and the effectiveness of the drug on your disease activity. It takes a close eye to keep all of these things in check!

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

Cross your legs, Baby Bun!

As I've mentioned, Johnny and I would like to be surprised come October about what the gender of our baby is. We have another 2-week sonogram this morning, so hopefully Bun will be kind and refrain from displaying his or her wares. In the meantime, I welcome your guesses, hunches, and premonitions. You have a 50/50 shot, so feel free to throw out your vote!

I was teasing Johnny recently that he probably really wanted Bun to be a strapping young man - perhaps so he could pass on his name - but he assured me he had no preference. I kept egging him on, thinking that I'd get the truth out of him if I persisted. Well, the truth did come out, as he said, "You have to remember that for the last five years, I didn't know if we'd ever be able to have kids, so I'll take whatever you have in there."

Well, if that didn't bring tears to my eyes! It reminded me just how patient, understanding and supportive Johnny has been through these past few years with Lupus. He's never once rushed this pregnancy process, and was usually the one to call off our attempts when he could tell my body wasn't up to par. We've waited this long, and now it's really paying off. I never thought I'd be sitting here, almost 6 months pregnant, but I am, and I'm thankful everyday that we were patient enough to let it happen.

I was just emailing someone today about Lupus and pregnancy - and mentioned that it wasn't that we had given up hope of having a baby, we had just realigned our priorities so that babydom wasn't something we were counting on. We didn't even know if it was a possibility, and relieving ourselves of that pressure really allowed me to focus on what was most important at the time - getting healthy for the sake of living well. I know now that was the most important goal of all - not to have a baby, or taper my medications, or cutback on my naps - it was to concentrate on being the happiest and healthiest person I could be...and then the rest of those things would fall into place.

I know it's easy for me to say all of this now - since I am pregnant, happy, and healthy - but I guarantee you, it wasn't just luck that got me here.

Listen Up, Doc - Tip #2

Take Someone Along with You

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.

From time to time, I’ve asked my husband or sister to accompany me to my appointments, and when that happens, Dr. R knows that something is amiss. He’s even joked that when I walk in the door with a companion, he knows he’s “in trouble”. Granted, I tend to bring in my back-up troops when I feel I’m not getting through to him or when I’ve been sick for weeks without explanation, but the presence of a third-party seems to be just the stimulus we both need to renew a direct and effective line of communication.

I had a chance to sit in on a doctor’s appointment that wasn’t my own, when I accompanied my sister to a doctor’s visit about which she was particularly nervous. We discussed some of the questions she planned to ask on the way to the appointment, and like a good, prepared patient, she’d brought a list of things she wanted to mention to the doctor. Several minutes into the appointment, though, I could tell that her brain was beginning to overload with all of the information discussed, just as mine would and usually does during my own appointments. Just as she’d done for me dozens of times in the past, I jumped in and asked a few questions myself, relieving her of the pressure and/or confusion one feels when the issue of your own health is being discussed. On our drive home, I helped her recap the discussion that had taken place, remembering a few details that she had forgotten. It became apparent how much I must have needed her help during my sickest visits to the doctor.

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!

Bring on the Back Ache!

I'm definitely starting to feel pregnant: My stomach can no longer be referred to as a cute little bump - it is now officially a big ole' belly; my ankles are sufficiently puffy and I'm starting to become forgetful. I'd say I have all of the markings of a mom-to-be. What fun!

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.

Low Vitamin D - Common in the Rheumatology office

Here's another interesting discovery regarding Vitamin D. Be sure to check out one of my previous posts regarding the benefits of Vitamin D, if you missed it the first time!

Undiagnosed Low Vitamin D Levels Extremely Common in Rheumatology Patients

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.

Of 264 patients who presented during this time period, 231 agreed to have their levels of parathyroid hormone (PTH), 25-hydroxy vitamin D, creatinine, calcium, phosphate, albumin and alkaline phosphatase measured.

Hypovitaminosis D was defined as 21 ng/mL (53 nmol/L) or less, and severe deficiency was defined as 10 ng/mL (25 nmol/L) or less. A PTH range of 15-65 ng/L was considered normal.
Results showed that 162 patients (70%) had hypovitaminosis D, 26% had severe hypovitaminosis D, and 21% had secondary hyperparathyroidism.

Age did not have much effect on prevalence as 78% of patients 30 years of age or younger and 65% of patients 65 years of age or older were vitamin D-deficient.
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.

"The findings may simply reflect the background prevalence of hypovitaminosis D or may represent the co-relation of low vitamin D levels with widespread musculoskeletal pains and/or different autoimmune diseases, one of the common presentations in rheumatology outpatients," Dr. Haroon said.

He emphasized that because patients enrolled in the study were patients presenting for an initial assessment, they are "a good representation of our general population."
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.

Happy Birthday to Me!

So I turned 34 over the weekend. Thank goodness Johnny whisked me away on a vacation to upstate New York and Vermont for the week...when you're on vacation, it's impossible to feel any older.

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.

Here's my attempt at a 6-worder...complete with illustration.

Exceedingly happy with life's unexpected plan

Even though this may be cheating...here are my two runner ups, both which hit on major points in my book:

Happily loosening my grip on life

OR

Regaining control without gripping the wheel

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:

Mark

Rebecca (link coming!)

Johnny

Sara

Becky

Baby Bun in Action

Here's a picture of the little munchkin, who is now weighing in at 11 ounces. I'd like to claim BB is closer to about 10 pounds, to account for my extra poundage, but alas, the sonogram calculations don't seem to lie.

And in this picture, you can even see BB reving up to give mom a big ole' thump with those feet (per yesterday's post). Nice, Bun. Really nice.

Baby Bun's Jig

So I've been anxiously awaiting the moment when I could feel Baby Bun moving around in my tummy, and that moment has finally arrived! Everyone told me it would be any day now (I'm going on 21 weeks), but I was becoming very impatient. I should have known, though, that once the thumping began, it wouldn't stop. Every afternoon around 4pm, Baby Bun does an Irish Jig that would put the Riverdance troupe to shame. It puts a smile on my face each and every time I feel a thump - I just can't help it! Of course, 4pm is smack dab in the middle of my daily nap, so I guess BB is starting early in reminding me who's really in charge here,

As far as my bi-weekly sonograms are going, I had another one last week, and BB's heart was in perfect condition. If you recall, with my Lupus SS-A Antibody, the baby is at risk for congenital heart block. The condition is ideally reversible with a course of potent steroids to the mother (me)...but ideally, we're not going to need to do that. So far, so good!

I'm feeling great and my doctor was thankfully able to clarify the plan of attack come the fall. My due date is currently October 20th, but due to my condition, the plan is to deliver at approximately 37 weeks (and a few days). That puts delivery on the weekend of October 3rd, in order to reduce any additional risk to BB. Guess they'd prefer to get BB out into this wonderful world of ours, rather than subject the baby to any more of my Lupus shenanigans.

Around September 15th, I'll stop my daily Lovenox injections (the anticoagulant), and start on Heparin (also an anticoagulant injection), but one that is administered twice a day. The reason we do this is to prevent me from going into labor while on the Lovenox, for fear of hemorrhaging, etc. Because Heparin is done twice a day, it doesn't stay in my system as long, so if I do go into labor mid-day while on the Heparin, the medicine will be that much closer to wearing off than if I were on the Lovenox, whose effects last a full 24 hours.

In addition, I learned that while on Heparin, the results of the tests used to determine my level of anti coagulation would be available relatively quickly, where as the Lovenox results could take up to a day. (Who knew, right?) So...I'll be making that switch the middle of September, and then tentatively planning on going into the hospital on say, Friday October 3rd, getting prepped overnight, and then being induced on Saturday the 4th, or so says the doc.

You know what I say to all that? AAAAAGGGGGHHHHH!!! It's so exciting to have things a little more spelled out, but it's crazy to think that we have less than four months of Bunless-ness. How time flies when you're gaining weight!

At present, I don't have too many worries about actual labor logistics. For every person who tells me that "being induced equals C-section", someone else assures me that they were indeed induced, but didn't have a C-section. The pregnancy debates never end, do they?

Chronically Jetsetting

Johnny and I were recently traveling, and I was reminded of the things we've done to make sure our vacation is really a vacation, rather than a breeding ground for a nasty Lupus flare. Here are a few of the things we do to ensure I stay healthy while on the road (or in the air, on the tracks, or on the water):

1) Make Relaxing a Priority: We don't really plan a whole lot of activities during our vacations. My husband makes all of the travel arrangements, and I typically show up the day of the vacation, and then just see where the trip takes us. We're not huge sight-seers, but we do like to walk, so when we arrive in a city, we usually just head to the sidewalks for a nice, leisurely stroll, stopping along the way for requisite snacks, drinks, or entertainment. (And in my current condition, the snack and drink stops are plentiful.) One might think that for a "relaxing vacation", we'd just head to the beach, but I'm not a huge sun person (due to Lupus). Plus, Johnny and I would rather go exploring in a new city, region, or area rather than sip away our vacations in a beach chair. (Although, that doesn't sound too bad right about now, does it?)

2) Plan for a Nap: We've traveled to over 35 countries around the world, and no matter where we've been - on safari in South Africa, at the top of Machu Picchu in Peru, or enjoying the thermal baths in Eastern Europe - I've managed to fit in a nap in the middle of each and every day. Johnny does a great job of "busying" himself (by golfing, golfing, or golfing) while I stop down for a couple of hours each afternoon, and by the time I wake up, I'm ready to rock and roll into the wee-ish hours of the night. (I say wee-ish because we aren't really partying until 4am anymore, but we do like to linger over a late night dinner with drinks, dessert, etc.) Without a nap, I'd be incoherent by about 7pm...but with a refresher nap from 4-6pm, I'm good to go until 12am or beyond.

Sometimes the actual day of traveling makes napping challenging, but Johnny does his best to book our travel times so that I can either get a nap on the front end or back end of the trip. For instance, if we're flying out in the morning, he'll try and arrange for us to touch down and find our way to our hotel by about 2pm or 3pm...in time for a nap. If we're flying out in the evening, he'll make sure he leaves enough time so that I can nap before we have to leave the house for the airport, and then I can fly out rested and refreshed. I used pretend that I could sleep on the plane - and while every once in awhile that is necessary (for long flights abroad), I've learned that banking on a solid 2 hours to nap on a plane just doesn't cut it for me.

3) Don't Hesitate to Ask: Nine times out of ten, I end up calling the hotel we're staying in to either get an early check-in or a late check-out, in order to fit in a nap. You'd be surprised how accommodating hotels can be when you say that you have a medical necessity and that you need to have access to a hotel bed in the afternoon. In fact, one time, I was traveling with my sister and my then 1-year old niece, and we called to ask for an early check-in so that my niece could take a nap. The front desk person didn't seem to be able to help us out, but when I got on the phone and said that actually, I also needed to take a nap, due to medical necessity and the fact that I had Systemic Lupus Erythematosus, she was able to get us a room. I don't use Lupus as an excuse to get what I want, but I am assertive about making sure I take care of myself. No need to spoil an entire day (or two) of vacation because I was too embarrassed or shy to talk about my disease!

4) Double check Meds and Carry them with You: I would be LOST without my meds...so I always check to make sure that I have enough pills to get me through a trip, and I carry my medicine bag with me, rather than checking it through in my baggage. I used to get some pretty quizzical looks in security (because there were times when I had a lot of prescriptions), but when that was the case, I kept the drugstore copy of my prescriptions with me so I would have documentation to back up the pills. The only exception to carrying my drugs with me has been with the injectibles I'm currently taking for pregnancy (Lovenox). While I could carry the injections through security, I believe I would need a letter from my doctor issued each time I flew...and I prefer to avoid that hassle and take the risk by packing them. Thankfully, at $50/needle, I haven't had any problems with lost luggage so far. Baby Bun and I haven't seen much air time anyway over the last few months, so it hasn't been much of an issue.

5) Keep the Essentials Packed: I keep a 2nd set of the following in my suitcase at all times: A hat with a wide brim, a bag of medical supplies (aspirin, bandaids, cold meds), sunscreen, toiletries (like shampoo, conditioner, etc), a little black purse, and 3 pair of underwear. Clearly, the last few items aren't Lupus-related, but I thought I'd throw them in there since, indeed, they, too, are always in my suitcase. (I've learned that keeping a few extra pair of emergency undies in my luggage is easier than trying to ask for directions to the unmentionables department in a foreign language.)

The hat and sunscreen obviously help out when we're in sunny locations and I can't seem to find the shade. The medical supplies are for all of the unforeseen issues that crop up with Lupus - we're so prone to health issues in general, I find that generic, back-up meds (all of which are safe to take in conjunction with my prescriptions) make traveling alot less troublesome. And the toiletries just make packing that much less stressful, as do the purse and undies. The less I have to throw in a bag, the better. I also try and pack the evening before we leave, just so I'm not running around the day I travel. The "day of" is exhausting enough - so I try and eliminate as much stress as possible.

There you have it - just a few helpful hints that have allowed me to continue to travel the world, despite Lupus.

Children with Lupus

Here's an interesting tidbit about pediatric-onset SLE. You don't hear much about it, but it's definitely out there. Read on for more information!

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!

A long, long time ago...

Although I've barely scratched the surface as far as Baby Bun's provisions go (i.e. scoping out baby furniture, strollers, and bedding), I realize that I've been "preparing" for Baby Bun for a long time. The way I see it, I started about 4 years ago.

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.

As the boys and I continue to prepare for Baby Bun's arrival, Darwin and Henry test out more of BB's stuff:

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!

I'm not Afraid of Needles...

...But I am scared of the dark; dingy, cavernous basements; and mice.

So I'm 33 years old and I'm still afraid of walking my pugs at night by myself, I admit it. Nonetheless, over the years, I've grown accustomed to many of the not-so-pleasant aspects of having Lupus. As many things as I've been able to overcome, it always surprises me when I find myself dreading or being scared of some aspects of my disease. After eight years, there are still just some things that I don't like. Here's the rather curious list of the things that I'm afraid of, and those that I am not!

Not Afraid: Going to the Hospital

Afraid: Staying Overnight

Not Afraid: Blood Transfusions and Endoscopy
Afraid: Chest X-Rays (that reveal pleural effusion!)

Not Afraid: Getting Pregnant with Lupus

Afraid: Staying Pregnant with Lupus

Not Afraid: Needles

Afraid: Enemas (sorry I even mentioned it!)

Not Afraid: Adding a new medication to my drug regime
Afraid: Having a medication mysteriously stop working

Not Afraid: Paying (out the wazoo) for insurance

Afraid: Not being insured

Not Afraid: Living (well) with Lupus

Afraid: Not having the chance to tell people about it

(Although the book and this blog are pretty good outlets, don't you think?)

Anyone else have a list, Lupus-related or not?