Doug’s Health: Hoping Humira Works

People often ask about how my health has been.

My rheumatologist and the one I saw at Brigham & Women’s Hospital agree that I have symmetric psoriatic arthritis, finally answering the question of psoriatic versus poststreptococcal reactive arthritis, although it must be pointed out that this is not a definitive diagnosis, but rather a differential one based on the presence of psoriatic skin lesions and the lack of reactivity to methotrexate alone.

I haven’t written much because, frankly, there hasn’t been much to say. While continuing treatment with methotrexate, the inflammation which has made it painful to move in certain ways (and at time nearly impossible) has stayed almost the same for months; the psoriasis—apparently the start of the whole mess—has actually gotten worse. After several months when the arthritis symptoms were quite severe, most of the duration of this has been more mildly debilitating.

I’m now able to move well enough to use our elliptical machine at home nearly every day. I was only really “down” about this illness once, when I realized there was no way I could participate in a planned outing to The Strategy Zone that I’d been anticipating for nearly a year. (I actually cried about that one.) It is very hard to lose weight (although I’ve taken off 4 pounds since Thanksgiving), even with Nichelle monitoring and prescribing my diet. It hurts to do things like put on and take off shoes, and exercises like Tao-Bo and running are out of the question. Until this became bad in early June, I was running about two miles every day—something I had worked since the previous November to be able to do. I’ve been able to help compensate for the psoriasis by spending the drive to work and back brushing my hair, which helps keep me—mostly—from looking like a Head and Shoulders commercial. (Finding a brush that was stiff enough was amusingly difficult.)

To be honest, it was much harder to see Nichelle suffering all that time under her vitamin D deficiency and being unable to do anything to truly help her. Being the “sick one” is sometimes very mildly discouraging, and somewhat painful, but it hasn’t been that bad. I also have much more sympathy to those with movement disabilities or rheumatoid arthritis.

Yesterday I took my first dose of Humira, a band name form of adalimumab, which is a tumor necrosis factor-alpha inhibitor. TNF is part of the inflammatory process, and inhibiting it reduces inflammation.

However, in addition to some other potential side effects, Humira is an immunosupressant, and can leave one open to infections and other illnesses. (For this reason I had to be very carefully screened for tuberculosis.) It also has to be injected, although only twice a month, and it’s only subcutaneous, and nearly painless. (I’ve had blood draws that hurt more.) It’s also very expensive—I believe about $20,000 per year—but insurance covers that, and the manufacturer even pays my co-payments.

On the bright side, in 4–8 weeks, I might start to see some reduction of symptoms, although the full treatment often lasts a year.

Thanks to all of you who are praying, and for all your kindnesses along the way.

Chemotherapy (Cancer Optional)

The reactive arthritis—if that is what it is (see below)—continues. Some days are better than others, and it’s much easier than it was a number of weeks ago, but it really isn’t going away. Last night I was able to do some ab[dominal] crunches (something I expect to do daily now), and I also spent a short time on the exercise bike, but couldn’t use my left arm or either leg, only my right arm, because of the joint pain in my knees and shoulder. My prayer is that my legs, fingers, and shoulder will improve enough for me to exercise the way Nichelle wants me to the way I want to. (It also means I’m not likely to be doing any real hiking or bicycling during this glorious summer, which is more than a bit disappointing.)

Of course, there’s a possibility that this isn’t poststreptococcal reactive arthritis—it might be psoriatic arthritis. On the other hand, it might have started as one thing, but be developing into any one of another inflammatory arthritic condition. (I do also have what appears to be psoriasis on my scalp—which Nichelle gets credit for noticing and making sure I discussed it with my doctors as possibly related.) Or perhaps I’m just faking this to get out of Nichelle’s “new and improved” workouts … or maybe it’s Munchausen syndrome … or maybe even Nichelle is secretly causing this, making it Munchausen syndrome by proxy.

I should add that my follow-up echocardiogram and EKG were both fine, so we have now officially ruled out rheumatic fever.

According to Dr. Eranki, I have an atypical presentation, which means that my symptoms don’t exactly match one particular flavor of arthritis, making diagnosis even more difficult than usual. In other words, I am just weird.

I start on methotrexate today. Methotrexate is officially a chemotherapy drug, but is also used to treat psoriasis and arthritis and other rheumatic conditions. For those of you who want to sound smarter than your peers, you can tell them it’s a DMARD (disease-modifying antirheumatic drug), which decreases the pain and swelling of arthritis and reduces both the damage to joints and the risk of long-term disability.

Discussion of the drug prompted a surprisingly emotional reaction. Having a new medication introduced as a chemotherapy drug … knowing the side effects of many chemotherapy drugs, I was leery of trying it. I also realized for the first time that the medication “reduces the risk of long-term disability”—dragging me into the understanding that the near-constant joint pain and swelling isn’t merely an inconvenience, it could make the rest of my life more difficult as well.

At any rate, I spent the past few days reading up on the medication, carefully observing that the arthritis isn’t going away, and a while yesterday peppering the Dr. Eranki with questions, before deciding to go ahead with this phase of treatment. Even with this, it will be at least 6 weeks before the methotrexate has any noticeable positive effect.

However, I am grateful that the fevers finally seem to be mostly gone, and that I am able to work and do many other things normally or with minor restrictions. These blessings have not always been available to me throughout this illness, and I thank the Lord daily for them.

Onward …

Today, I Could Put on My Shoes!

Throughout this illness, which appears to be Poststreptococcal Reactive Arthritis (although it could be something else), my health has been quite varied. (Also, I have filled in some medical detail after the symptoms descriptions; mostly to clarify what PSRA is, and how and why my treatment is progressing the way it is.)


No, these aren’t my shoes, but … dang … [Enunciate the last bit the way Will Smith recommends Beatrice (Edgar’s wife) hire an internal decorator in Men in Black.]

For example, here’s how the past few days have gone:

Thursday: Ibuprofen taken at night allowed me to move fairly well in the morning. As soon as I woke up, I took my prednisone, and within a couple of hours, was able to hobble about without much pain. I had a doctor’s appointment mid-day, but worked at the office and from home around the appointment, and felt very good. By late afternoon, I had a fever, and needed to take a short nap. Still, I managed to get to and lead our small group Bible study, with Nichelle driving. I felt good, and didn’t take any extra medication at bedtime, when the prednisone was definitely beginning to wear off.

Friday: Not taking the ibuprofen seems to have been a big mistake. I awoke at about 5:00 a.m. with serious pain and movement issues. I could barely move my legs, and couldn’t use either hand. I waited until 6:00 to take the increased dose of prednisone Dr. Eranki prescribed, but it took hours to have a noticeable effect. I did go to work, but didn’t make it into the office until 11:30 a.m. Due to the pain and swelling in my left middle finger, typing on my left hand was reduced to 1-finger. Still, in the evening I felt very good. Nichelle and I were able to attend “Run for Your Wife,” a TCAN Players [hilarious] comedy play featuring co-worker Laura Crook.

Saturday: I felt good for a few hours in the morning, but spent most of the day fighting the low fever, playing some games with the kids and hanging out in Azeroth, spending an inordinate amount of time trying to beat a seasonal instance.

Sunday: Good in the morning. I was able to drive to church early for my Geek work (A/V), and even ran a couple of quick errands in Nashua after the service (pharmacy; gas for the mower). By mid afternoon, the fever was back, and I spent a couple of hours starting at supper time just sleeping. Afterward, I felt pretty good.

Today: Today I was able to move my legs well enough to put on shoes and socks for the first time in several weeks! (After taking prednisone a few hours earlier.) The biggest problem today is my left hand. I do have a low fever, but it’s only about 1/2 a degree above normal, which to me is starting to feel normal.

By this evening, my movement ability had dropped a bit, but not much, but I became febrile again enough to notice. Oh, well, today was better than usual.

PSRA Details / Symptoms / Concepts

Tomorrow will mark my fourth week since the onset of obvious symptoms, and I had noticed some minor symptoms before that. Wow!

Poststreptococcal Reactive Arthritis is only a probable diagnosis. I will have an echocardiogram in a few weeks, as well as another Lyme disease titer, to rule out Rheumatic Fever and Lyme disease, respectively.

However, PSRA does seem to fit the symptoms. Neither PSRA nor rheumatic fever are testable conditions; they are syndromes—collections of symptoms—and the symptoms must be weighed carefully to figure out what the overall diagnosis should be.

The biggest meaningful symptoms or test results have been a positive blood test for a recent strep infection, the swelling and joint pain in my legs, hands, and shoulders, the fever, and vast number of negative tests for heart problems, liver function problems, active infections, etc.

Note that arthritis essentially means joint pain, so the reactive arthritis (assuming that it what I have), is not the type of arthritis that we all tend to develop as we age. (There is some x-ray evidence of that happening in my back, which is completely normal for this point in my life, and has not affected me in any way.)

I have a few days to go on my antibiotic treatment, and have already started tapering down the prednisone. Today has been my best freedom-of-movement day so far, and I hope that trend will continue. The guys in my at-work Bible study laid hands on me and prayed for my recovery today, which was very moving.

Day 13

Nichelle and I are reprising the roles we had when she was so ill, albeit we have swapped who we are playing. I get to play the part of “Nichelle, the inexplicably sick one,” and she gets to play me.

Today is Day 13 with the still-unexplained fever, leg pain, phalanges pain, and swelling. (The swelling in my leg and foot has become quite “interesting.”) None of the tests I’ve had (and there have been many) have found anything conclusive. I will see a rheumatologist soon (I hope before my currently scheduled appointment of July 8 ), and continue to work—much—with my own primary care office.

The forecast seems to call for uninterrupted fever, with a scattered chance of more severe pain, and increasingly widespread swelling.

For example, yesterday I went to church, and Nichelle drove us to Randolph to celebrate Debbie Civil’s 18th birthday and high school graduation. (Debbie is a blind girl in a wonderful Christian family who used to, along with her siblings, ride our bus to church at New England Baptist.)


The Civil Family and the Wilcox Family. Debbie is the second person to the right of Nichelle. (At this point I could even squat down for the photo, albeit stiffly.)

I hobbed about, but felt pretty good, and was able to walk almost normally for a couple of hours in the afternoon. On the way to the party I slept; on the way back we stopped at the Natick Mall to see the completion of a 7-foot-tall R2-D2 (which we contributed to on Saturday). In the very short walk through the mall, my leg got worse. By the time I went to bed, the pain and swelling was worse.


I offed to take this home for them, but they didn’t think it would fit in our van. (See the swelling in the leg?)

I awoke at 5:30 a.m. with my leg in considerable pain, my temperature up to 100.9 (at 101.5 my doctor’s office wants to know about it), and that awful everywhere-hurts-because-I-have-a-fever feeling. I was also really hungry. I gobbled acetaminophen and ibuprofen (and cereal), and then slept virtually constantly until noon.

Today I’ve managed a little bit of work, but the fever and finger pain is still there, so I haven’t accomplished very much. I am trying to let my body get the rest it needs, it just doesn’t seem to be helping much.

In addition to work, I’ve just got to get better for our church trip to Strategy Zone on Saturday.

What’s Wrong with … Doug?

Okay, here’s the deal …

Last Tuesday (May 27) I was falling asleep in a meeting. Now, bear in mind, I often fall asleep in meetings, but not usually in meetings of only a few people and where I am one of the key participants. I excused myself and went home sick.

(As I think about it, a week earlier I had been complaining that muscle pain all across my upper back—I thought from weight lifting—had lasted more than a week, and when I sat down to do chest flies, I discovered I couldn’t put much pressure on my left arm in the direction required.)

The next few days I took half days off, plus one full day, fighting a low fever (1 to 1.5 degrees above normal), working when I didn’t feel in that brain-dead state that fever brings on.

Meanwhile, I started having more and more stiffness in my legs, especially after sitting down for a while, and developed a pain in my fingers, particularly around the proximal phalanges.

Thursday I got in to see one of my two N.P.’s at Nashua Primary Care, and she explained that it was probably viral, and ordered a slew of blood tests, including a Lyme disease titer, because a number of the symptoms matched Lyme, even though we had not observed a tick bite or the infamous bull’s-eye rash from one. The only abnormal result was a slightly elevated sed rate, which indicates inflammation of some kind. However, Lyme disease antibody tests can be negative for several weeks even when symptoms have begun to present, so I have a retest in three weeks.

Monday had me phoning the doctor’s office again, explaining that the difficulty walking had gotten much worse beginning on Sunday. Questions and answers went back and forth throughout the day and the next morning, but around noon Tuesday (day 8 of fighting the fever), after confirming some swelling in my left leg (which I was completely oblivious of, but which Nichelle spotted right away), they referred me to the emergency department at Southern New Hampshire Medical Center. (I wasn’t even up to playing World of WarCraft on Tuesday morning. Tragic.)


(Enterprise E sick bay drawing courtesy of www.ex-astris-scientia.org.)

The primary reason for going to the E/R was because such swelling can be caused by a DVT (I would explain, but that would save you the fun of some Wikipedia research) or a blood clot in the lungs.

More blood was drawn. Twice, actually, the first batch turned out to be unusable. (I warned them not to expose it to sunlight or tachyon radiation …)

Nichelle dropped me off, and brought everyone by when she picked up Isaac and David from school. Shortly thereafter, as I was being wheeled to the Radiology department (my first trip on a gurney since infancy), both Isaac and David asked, “If you die, can we have your World of WarCraft gold?” Weasels.

The ultrasound and X-ray didn’t turn up any clots; however, the chest X-ray showed an enlarged heart (and you all thought my heart was two sizes too small), so in addition to still having a problem with whatever is causing me to be unable to walk, I’ll be visiting a cardiologist soon.


Admit it, this is more like what you expected.

The hospital gave me a tapered dose of prednisone, which, for 23 hours, allowed me to hobble a lot faster. It was a delight to wake up this morning and be able to move my legs with almost no difficulty, especially as on Tuesday I was nearly completely crippled, and the pain in my hands was so bad I couldn’t even open a soda bottle. But around 5:00 p.m. today the leg pain when moving set in again, and I was back to smaller steps (although not nearly as bad as Tuesday).

I have an appointment to see my own N.P. tomorrow night. I’ll have a cardiology appointment as soon as my doctor’s office can arrange one. (They are remarkably adept at getting a squeeze-in consultation; I’ve seen them turn an 8-week wait “even if your doctor refers you” into a three day one.) Possible causes for the enlarged heart are an infection in the past that caused tissue damage, or—as I learned about through my own research today—a completely benign condition called Athlete’s Heart Syndrome (see also this article) which sometimes develops in people who do a lot of cardiovascular types of exercise.

Ignoring the enlarged heart and going back to the original symptoms, I called my sister Cindy last night and learned that my niece Jenn had exactly the same symptoms, and is currently recovering finally after a round of antibiotics. The only test that she had come back positive was one that indicated an exposure to strep at some point. This matches a bacteriological diagnosis, rather than a viral one, but her case baffled her doctors for a while, and, they too suspected Lyme disease.


The weasels just want my gnome engineer Mortalan character’s gold if I kick.

Being sick like this has made me appreciate much more how difficult it is for those with movement-related disorders or painful problems like arthritis. I also have a much better understanding of just how difficult it was for Nichelle all those years when her vitamin D deficiency left her debilitated.

Still, I find many blessings. Kronos’ sick time policies are excellent, and the superb insurance for which they are paying means I do not have to worry about the medical bills. I can work from home to coordinate with going to appointments or on those mornings when I’m not sure how well I’ll feel, and keep up with work e-mail, etc., even when too sick to go in. I get to experience my children’s delightfully twisted senses of humor in a time that might have been stressful to them. Nichelle is a constant help to me as well. I continue to benefit from (and am particularly grateful for) the large amount of time coordinating my case that my N.P.’s Celine Fortin and Rebecca Cooper-Piela and my “nurse-on-the-phone” Fran have put in.

I am glad God doesn’t want my life to get too boring.

(The saga continues on the post entitled Day 13.)

The Jerks Always Win

… was the text message I received recently from a heartbroken friend. I am not at liberty to share the details behind this, but emotional abuse figured significantly in the story that was summed up by that statement.

For several years, I have informally studied the short- and long-term effects of sexual abuse. I have read over a dozen books on the topic, attended trials and hearings, evaluated cases in the media, communicated with subject matter experts, and supported and interviewed survivors. The bottom line is, as Anna Salter wrote, “Child sexual abuse was like getting bitten by a rattlesnake: Some kids recovered completely, and some didn’t, but it wasn’t good for anybody.”

On the whole—unlike 20 years ago—our society is beginning to “get it” in regard to sexual abuse. Popular knowledge is now cognizant of the need to expose its occurrences, protect its survivors, and punish and forever monitor the offenders.

Sadly, the balance still favors the offender. Most are never caught; even those who are prosecuted often reach that stage only after permanently damaging numerous innocents. The jerks always win.

But there is another type of abuse, typically (but not exclusively) perpetrated by males against females, that we often gloss over: Verbal and emotional abuse.

There was a lot I did not understand about sexual abuse, due to my own ignorance—I could not fathom, for example, why Celie did not simply run away to escape her abusive husband when I read The Color Purple ages ago. Of course, now I know that her sexual abuse as a child played a large part in this, and that certain types of abusive behavior will nearly always produce certain types of behavioral results, such as remaining with or returning to the abuser. Whether this can be explained rationally is irrelevant; the causative facts remain both evident and consistent.

There is a lot I do not understand about verbal or emotional abuse. Why would one continually mistreat a woman with whom he shares a social or even romantic connection? Why would anyone continually belittle her accomplishments, describe her as worthless or stupid, scream profanities at her, become angry at her without provocation, or limit her financial and personal freedom?

Why take something beautiful and damage it, making it less valuable?

Why tarnish God’s most beautiful and intricate creation, rather than polishing it for all the world to see?

We’d like to think this happens only in our underclasses, but that is hardly the case. One account conveyed to me by a friend was of a woman who was a published biological research scientist, with a doctorate. This didn’t protect her from her boyfriend whose constant belittlement convinced her that she was of no value. This happens far more than we realize.

I confess, I simply do not understand verbal or emotional abuse. I absolutely cannot understand why someone would mistreat any woman, especially one entrusted into one’s care. I know what the advice is to those in an abusive situation: “Get out immediately”; but few will be able to heed that. I often wonder why women seem to be so predictably malleable under such abuse, but perhaps this is why the Apostle Peter referred to wives as “the weaker vessel,” and commanded husbands to honor them and be understanding.

I see that I need to improve my knowledge deficit, just as I studied sexual abuse.

In the mean time, I’m going to keep polishing.

I got to go out on a Saturday and shop … amazing!!

This afternoon we left to drop Isaac off at his friend Cody’s house, which also gave Naomi and David the opportunity to use Cody’s trampoline (which Doug did tape for future viewing). Thank you, Langlois family.

I had an opportunity to chat with Cody’s Mom, too, which was great. Once we were done there, we went to Wal-Mart. Big deal for me, I actually managed to pick out clothes and shoes and try them on, while Doug took David and Naomi to buy the other items on the list. It was getting a “bit” unbearable by the time I hit the shoe aisle, but I was able to make it through the rest of the store, before the awful pain hit my back and legs. Naomi and I made it back to the van, extremely slowly, while Doug paid for the carriage full of items that we needed. I’ve needed several breaks since being home, but I’m still going, perhaps not as strong as earlier today, but still going, and that in itself is a huge blessing.

Mind-Body Connection: Rheumatologist at Brigham …

Or, how much pain can you work through on a daily basis?

How much would your body allow you to do with pain on the scale that’s typically 7 to 10? I’m frustrated, because I’d prefer to be active, being able to minister and do for my family like I once did…. and no one seems to “get” that.

—Nichelle

Yesterday we pulled off the usual logistics nightmare that involved a trip into Boston. Trish Dunn took the kids, except for John, who after a very disheartening and inexplicable episode, is spending a week in Brockton with his biological sister and her husband.

Dr. Anderson, a highly-recommended rheumatologist based at Brigham and Women’s Hospital in Boston (where Isaac was born), seemed to be highly skilled, and asked excellent interview questions. He is, unless we’ve missed some, the tenth doctor Nichelle has seen in the past two years.

Primarily, we forcused on the constant, very severe pain she is experiencing. He was able to rule out bone disease, tumors, diseases involving musculare weakness, nervous system disorders, and joint diseases such as osteoarthritis and synovitis. This left him with our old enemy diagnosis: Fibromyalgia. He explained that Nichelle had already tried most of the medications (and all of the types of medications) that normally help alleviate Fibromyalgia symptoms.

He suggested and later reiterated that he believed exercise would provide the most benefit. We twice explained very clearly that the recurrence of the debilitating symptoms occurred during a period of consistent and signficant daily exercise, and that the inability to do things like walk more than a few steps without intense pain makes exercise very difficult. He spoke of the “mind-body connection,” and how things like Yoga (although he does not “believe” in it per se) or meditation and other things that have to do with the mind-body connection can, in conjunction with exercise, be of benefit, indicating that one can change “how your body talks to you.”

He asked if she’d tried any of the various restrictive or eliminating diets, but we don’t know if he was thinking about the consideration of food allergies or sensitivities, or just throwing out possibilities. We discussed other alternative therapies: chiropracty (provided only very temporary relief), therapeutic massage (provided only very temporary relief), and accupuncture, which we are willing to try (there’s an opiate receptor model for how accupuncture actually works, which may make it ideal for treating pain), but we haven’t been able to find a practitioner covered by our insurance.

One of the more interesting things he asked Nichelle was, “If you were on the Western frontier 150 or more years ago, how would you handle this?” Later I thought of a really good answer: “She’d become a judge, and hang a whole lot of doctors.”

Overall, it was a long, discouraging day, especially due to the added concern about John.

This morning Nichelle seemed determined to fight through and determine just how much she could accomplish before completely succumbing to the pain. She even drove herself to the lab (5 minutes away) to get the latest bit of blood work done.

Nichelle made appointments today with the Pain Management Clinic at Southern New Hampshire Medical Center, and with who we hope will be a good primary care physician. Both are not until the end of July or first week of August.

Dr. Hall (who ties with Dr. Rescigno for “Best Doctors We’ve Ever Had”) called back with her latest test results: Nichelle’s vitamin D level was good, and her PTH (parathyroid hormone) level was good, which means that the hyperparathyroidism was indeed caused by the vitamin D deficiency. The importance of vitamin D was largely overlooked until fairly recently, we learned from Dr. Hall, and vitamin D deficiency has turned out to be very common, especially in the Northeast.

We’ll have some other test results, such as for hemoglobin disorders and blood cortisol levels, next week.

Later today Nichelle goes in to Mass. General for two bone density tests. The illustrious Debi Costine is providing transportation (we’re bribing her with Middle Eastern food), and Cindy Lavoix and company are coming over to our house to watch the kids (or play with our game systems; I’m not sure which), which means I get to go to work.

Dr. Hall / MGH Visit 2

We had an excellent visit with the thorough Dr. Hall, although we are all still getting used to each others’ humor. To order the blood tests, Dr. Hall needed a diagnosis code, and was wondering what to put, so I suggested Munchausen.

Dr. Hall doesn’t believe Nichelle’s problems are primarily endocrinological, although there are endocrine issues, such as the previously diagnosed vitamin D deficiency and [probably] secondary hyperparathyroidism that she will continue to investigate. All of the thyroid tests came back fine. The adrenyls were good, and to our surprise, the various blood cell counts appeared to be normal as well.

She is going to do more hemoglobin-related tests, to look into various possible hemoglobin abnormalities that haven’t been tested yet. A blood-cortisol level test is also being done, apparently primarily because of Nichelle’s hair loss, although cortisol will affect edema as well. Last on the list of things to be tested now is bone density, both from the spine and hip. That will happen on Tuesday.

Another unlikely but possible problem is called cyclic edema. It’s difficult to treat, and it’s too early to diagnose, but it’s at least a consideration.

The next step is rheumatology. Dr. Hall referred Nichelle to a a senior endocrinologist, whom she described as “terriffic” and “very helpful,” at Brigham and Women’s. In an unexpected blessing, we got an appointment for Monday afternoon.

Fluctuations and Patterns

Occasionally, Nichelle will have a day when she feels well. These are relatively rare. I did some backtracking on the BLOG, to try to evaluate my impressions of the pattern for the past month or so. Here’s what I found:

Great days:

  • Saturday, April 29
  • Wednesday, May 31

Partially good days (there may be a few others of these, but not many):

  • Friday, April 28
  • Thursday, May 11
  • Friday, May 12
  • Wednesday, May 24

Bad-to-really-bad days:

  • All the others, especially from May 13 until the present.

On the “great days,” Nichelle can walk, run, drive, cook, and live pain free. Such days tend to appear suddenly, and the good period lasts for no more than 36 hours, and generally just 8 to 12 hours. I think people get the impression (especially because they don’t see her except when she’s in this better state) that Nichelle’s overall health is improving. Sadly, the opposite is clearly the case.

Of late, Nichelle is spending most of her time in bed. (Previously, the couch was her base of operations.) She’s extremely uncomfortable and in significant pain just about all the time, with bouts of severe pain several times a day. The fluid shifts (swelling) in her face and elsewhere can be very pronounced. The Vicodin (just like what Dr. House takes) prescribed by the emergency department doctor—the only pain medication that has actually helped relieve the pain—is gone. Nichelle made 10 pills last 6 weeks, but doctors don’t like to prescribe Vicodin because it is highly addictive. Generally, Nichelle doesn’t like to take strong painkillers like that because they guarantee inactivity, whereas living through the pain offers a slight hope that it will diminish enough at some point for her to perform small tasks.

For the past 24 hours, Nichelle has been in and out of deep and sudden sleep periods. We see this pattern quite regularly. Also, for the past few weeks, she’s been getting a sudden and urgent feeling that she needs to get something to eat. If she doesn’t, she becomes suddenly “drained,” and experiences what she describes as being “beyond weak feeling.”

Although there have been a few more “great” days than we typically saw in the past few months, the overall picture is of slowly worsening symptoms.


So far we have no word on the test results from our Mass. General visit on May 12, which means they were either all normal or are being carefully evaluated. Our next appointment with Dr. Hall at Mass. General is on June 16.


Our church family has been helpful, and they are shifting into a higher gear this week, coordinating more cleaning help and more meal preparation.

The biggest task-related problem I’m having is keeping the house clean. I have a big work-from-home typesetting project I’m working on evenings/weekends, and that’s leaving even less time for mopping and decluttering. (Plus, Nichelle’s worse-than-previously health has given her fewer opportunities for short cleaning spells, or even supervising the kids in the same.)