Big News: Doug Bakes … from Scratch

Last night, Doug mentioned that he wanted to make banana bread. Now this is major.

So, after dinner, he and Naomi headed out to the neighbors to get 1/2 cup of shortening. He tried a few homes before getting some. The only thing I had to do was put out the ingredients, and he and Naomi did the rest.

The finished product looked great and tasted great. I was very impressed. I told him, “This is just the beginning, just think of all of the things you can start making.” He wasn’t all that keen on that idea, but this morning he mentioned to Naomi that they can make more this weekend.

Doug’s teaching techniques are quite unique, too. I found him telling Naomi, “You have to let go your aggression on the bananas … feel the hate,” when they needed to be mashed. Waaaaay too much Star Wars influence here. She had a lot of fun, and Doug commented that it was fun working with her, too. Naomi also likes to help me cook, so she now gets the teaching from both of us. Which is of course helpful for her to be well rounded.

Paging Dr. House …

This is the kind of doctor we need.

Nichelle asked me to post some notes from today’s somewhat discouraging doctor’s visit. This was an apointment with a new doctor, who, we hoped, based on recommendations and screening, would listen carefully to the symptoms and be determined to find a solution. Instead, we are being asked to visit specialists in fields we have already visited, and have little to be encouraged about.

Here’s what was observed at the appointment:

  • Nichelle is now 5′ 6″ tall—two inches taller than the last time she was measured (some years ago; one doesn’t expect to get taller after the age of 25 or so). (Note: We don’t have a good benchmark for when this growth occurred; we’re trying to find out.)
  • Today she had a 101.2° fever, and was unaware of it. (When’s the last time you ran a slight fever and felt no different than any other time?)
  • Her blood pressure was slightly elevated.
  • Her weight has reached a new high.

Her new doctor wants her to see another rheumatologist, and another endocrinologist, and work with a pain management center (Southern New Hampshire Medical Center has one).

He believes the hair loss is an endocrinological problem. (Our endocrinologist who is treating Nichelle for vitamin D deficiency had no explanation for this particular symptom.)

The new doctor concluded that successful pain management would allow exercise, and that would lead to weight loss, despite the fact that the onset of these latest, ever-worsening symptoms that struck last fall occurred—contrary to typical fibromyalgia—during a long period of significant daily exercise combined with careful diet, which, incidentally, did not produce any weight loss.

Nichelle really feels like yet another doctor is not truly listening to her. I’m not completely convinced that’s the case, because he did immediately recommend two specialists and the pain clinic, so it’s not like he’s saying nothing’s wrong—it’s just that we can already discount one of his conclusions and he’s not really willing to listen to that (yet). The biggest problem is we have a neurologist who has a marvelous doctor-patient manner, and just projects a vast amount of caring, even when he is hearing about symptoms he can’t correct in his speciality. Nichelle called him yesterday, because he wanted to be kept informed of her overall medical issues—that’s not very common in a specialist. So, just about every doctor we’ve ever had seems inadequate in comparison.

I wanted to quote Job 10:2–3, 8 for this post, but Nichelle wouldn’t let me, so I’ll go with some verses from Psalm 30 instead, although when I heard these this morning (especially verse 2) they made me cry:

1I will extol Thee, O LORD; for Thou hast lifted me up, and hast not made my foes to rejoice over me. 2O LORD my God, I cried unto Thee, and Thou hast healed me.

10Hear, O LORD, and have mercy upon me: LORD, be Thou my helper. 11Thou hast turned for me my mourning into dancing: Thou hast put off my sackcloth, and girded me with gladness; 12To the end that my glory may sing praise to Thee, and not be silent. O LORD my God, I will give thanks unto Thee for ever.

Psalm 30:1–2, 10–12

A Friday Night Date with My Wife: E.R. Live!

Friday night Nichelle and I determined we hadn’t been out together in a while, so when I got back from the Museum of Science with the Quinlans, we decided to go someplace somewhat exclusive and very fancy, that we’d never tried before.

We were impressed with the curbside service—a staff member actually came out to the door and showed us in, which is a level of service far above that to which we are accustomed.

Once inside, we disocovered there would be quite a wait—this place is popular—so we settled down to wait a bit in the lounge. We were impressed by the obvious expense that had gone into the venue. Millions of dollars had been spent on making this place stand out from its competition, and everything looked beautiful, even though some parts were still being renovated.

We were at the renovated (but still expanding) Southern New Hampshire Medical Center‘s emergency department.

Nichelle had been in severe pain from Thursday afternoon on, and by Friday evening it had gotten unmanageable.

After a brief wait (only about 4 hours)—next time Nichelle will need to be either bleeding profusely or pregnant to ensure rapid attention—they got Nichelle checked in, and administered a couple of different drugs by IV, the second of which actually helped. She was still having severe, stabbing pain in her ribs every 5 to 10 minutes, but most of the other pain was significantly reduced.

At 5:00 a.m., she’d been released, and we took a trip through our favorite drive-through: Brook’s Pharmacy, and watched the sky brighten with dawn. How romantic!

This morning Nichelle is feeling much better. The grip of the pain seems to have lessened, and she’s able to move around again without difficulty. She even made me a breakfast sandwich (when I finally got out of bed around 11:30), and played a few rounds of Burnout 3: Takedown with Isaac, David, and I, which she hasn’t done in months!

This brings me to an interesting, if merely anecdotal, observation about the pain she constantly suffers, which varies in severity. It would seem, based on how much better she was this morning, that the medication delivered by IV interfered with a feedback loop that was keeping the pain severe and inceasing it in severity. In short, stopping the pain temporarily led to stopping the pain for a much longer period. Fascinating.

Another Dead End

Nichelle just finished with her second endocrinology appointment. She was carefully prepared, and her questions were answered frankly and accurately.

The one test that continues is for vitamin D deficiency. This is a fairly common problem, and could be lowering the calcium absorption, which can lead to bone pain.

However, that explains almost none of the symptoms Nichelle has.

The endocrinologist told her that, after having two clearly normal 24-hour free cortisol tests, Cushing’s Syndome is definitely not the problem.

Nichelle explained that her health has been cyclically poor for the past seven years (with some symptoms apparent even earlier), but that the past year has been dramatically worse. She asked him what explanation he can offer for her apparently-endocrine-related symptoms: Severe swelling/fluid retention that continues to worsen, as well as the pain and other symptoms described.

He has absolutely no explanation for the symptoms. When Nichelle asked if an endocrinology specialist or clinic in Boston might help with a diagnosis, he suggested Nichelle go back to her primary care physician for more exploration, and recommended against seeing another endocrinologist.

So, these are the symptoms for which we have no treatment possibilities at present:

  • Severe edema (fluid shift) with weight fluctuations of 5 lbs. in the course of a day.
  • Significant weight gain (over 65 pounds) in the past year, despite healthy diet and a significant daily exercise regimen (until last fall, when exercising became impossible).
  • Constant burning sensations, especially in the hips.
  • Pain. Moderate pain nearly always. Episodes of severe, stabbing pain on a daily basis. More than one episode per month of pain as severe or more severe than unmedicated childbirth. Stabbing, burning pains in collar bone and ribs.
  • Difficulty walking or standing.
  • Rapid deterioration of “normal” health over the space of 1/2-hour (normal as defined by the current baseline: still not very good, but able to function with only minor or moderate difficulty).
  • Extreme discomfort in having anything touching the skin on her arms.
  • Pins-and-needles sensations all over, especially the head.
  • Periodic cognitive difficulties. (This is the only symptom that has been less severe than a year ago, we believe because of partly successful treatment of sleep-disturbing migraine pain.)
  • Sudden or prolonged exaustion.
  • Severe sensitivity to having anything cold come in contact with her.
  • Feeling very hot or very cold not in conjunction with actual temperature. (Feeling extremely cold often immediately precedes episodes of severe pain.)
  • Occasional inability to grip small items, such as table utensils.
  • Inability to raise arms or hold an item such as a cell phone against her ear or face.
  • Difficulty putting weight on wrists to support.
  • Hair loss on the head, arms, legs, and hands.
  • Purpura—small spots that look like dark freckles that are appearing all over the skin and slowly multiplying. The ones that are a couple of weeks old are now increasing in size.
  • Severe pain in the bones of her wrists and feet, and in her collarbone.
  • Stretch marks and skin discoloration over an ever-increasing number of areas.
  • Dizziness
  • Nausea
  • Low body temperature (1 degree or more below normal) most of the time.

At this point, I can only thank the many of you who are following this for your continued prayer, encouragement, and support.

The Lord provides strength beyond our human means. This doesn’t mean we (and especially me) are not profoundly affected by Nichelle’s illness. I’ve noticed my “highs” have gotten a bit lower, and I do spend a short time each week—usually on the weekend—crying from “significant sorrow/frustration,” (probably because I am at home more and less busy while at home) but I am not in despair, nor am I depressed, and this doesn’t affect my ability to enjoy life or enjoy God and His many blessings. Most of the time I feel what I can only describe as a “dull ache.” But, God gives Nichelle and I patience and hope when there is no human hope.

Cushing’s? Inconclusive. What’s Next?

The endocrinologist’s office phoned late today with Nichelle’s test results. Her cortisol levels were 24 one day, and 35 another, well within what’s considered to be a normal level.

The tests did find an elevated PTH (human parathyroid hormone) level, and lowered calcium and vitamin D levels. He’s interested in verifying a vitamin D deficiency. (This makes me wonder if he suspects hyperparathyroidism, but that’s just a guess on my part.)

We’re both very, very disappointed. Cushing’s certainly wouldn’t have been a good thing, but it would have offered something we don’t have at present: treatment possibilities. This leaves us without much of a clue as to where to proceed. Nichelle is determined to find a clinic in Boston (or anywhere, really) that will make every effort to get to the bottom of this. Her symptoms continue to be severe, and worsening. (Although they have become slightly more predictable—many mornings are often somewhat tolerable for up to a couple of hours, but the swelling continues to worsen steadily, and pain episodes occur repeatedly throughout the day.)

I was encouraged by the memory of this Scripture-inspired song I learned in Ejido Constitución, México. (Unfortunately, I couldn’t remember one line and a couple of words, and, although I have the lyrics written down somewhere, I couldn’t find them. … After almost giving up, it seems this is two choruses combined into one song. The latter part I found here.)

Jehová es mi Pastor, nada me faltará;
Jehová es mi Pastor, nada me faltará;
El cuide de las aves, la Biblia dicé asi,
Jehová es mi pastor, nada me faltará.

Nunca, nunca, nunca me ha dejado,
Nunca, nunca, me ha desamparado,
Ni en la noche oscura, ni en el día de prueba
Jesucristo nunca me desamparará.

(Jehovah is my Shepherd, I shall lack nothing;
Jehovah is my Shepherd, I shall lack nothing;
He cares for the birds, the Bible says,
Jehovah is my Shepherd, I shall lack nothing.

Never, never, never has He left me,
Never, never, never has He abandoned me;
Not in the dark night, nor in the day of testing,
Jesus Christ will never abandon me.)

Naomi: Infantile Perspectives on Divinity

Our children are constantly exposed to the knowledge of the Lord, at home and at church. At times we find their understanding of God to be inspiring. At other times, their statements can be humbling. (See our post about David: Oh, That Lord!)

Last night at dinner, we were beaming with pride when, after Nichelle mentioned we might get snow this weekend, Naomi looked up to Heaven, and said, “Thank you, God!” for the snow she hopes will come. What spontaneous and wonderful praise, especially for someone not even 2.5 years old! How exciting to see her concept of God already forming.

Then she closed her prayer with up-pointed finger, and the demand, “Okay, Slacker-Weasel!?”

John: No Longer a Slacker? Eldest Wilcox Child Misses Honor Roll by One Point

I should have posted this several weeks ago, but I made a classic mistake of trying to write too much at once, to make up for the fact that I rarely write posts exclusively about John. So, here’s a more focused post:

This past quarter, for the first time in his life, John earned a report card that was quite acceptable. In fact, I believe he came within one point of making honors, thus narrowly avoiding the administration of emergency defibrillation to numerous school staff and family members.

We just got progress reports for this quarter, and overall John is still doing well, although he’s going to have to work a little harder on two subjects.

John certainly hasn’t had an easy life, and God has been working in him in a number of ways. He’s had to overcome obstacles that most people wouldn’t even imagine.

We’re very proud to see John living up to his potential—or at least much closer than ever before. We’ve always known he could excel, but I’m not sure he was always convinced of that.

Endocrinologist Visit: Cushing’s “Not Striking”

Yesterday we finally got to see an endocrinologist. The doctor listened well, and was thorough and knowledgeable. We are grateful to be working with him. (One gripe: No records of any kind had arrived for him, other than a referral letter from our neurologist, although that was of minimal import.)

Frankly, Nichelle’s symptoms puzzled him a bit.

He couldn’t explain the tiny spots appearing on her skin, noting only that they “looked like freckles.” (Yes, they do look like freckles, but freckles don’t generally multiply overnight.)

He did say that Cushing’s was a possibility, but that Nichelle doesn’t exhibit “striking” Cushing’s symptoms, nor would Cushing’s explain all her symptoms. (For example, Nichelle doesn’t bruise easily or have skin that damages easily, which are often found in Cushing’s, and Cushing’s—at least according to him—does not explain all of the pain she is having.) He explained that only fluid shifting could account for the rapid fluxuations in weight, but that normally Cushing’s does not cause such rapid change. (On the other hand, the large fluid retention, swollen face, and inability to keep arms raised he agreed were typical symptoms of Cushing’s Syndrome.)

Note that what may be considered the established symptoms of Cushing’s Syndrome tend to vary somewhat, so what may be considered a definite symptom by one doctor may be disregarded by another. Compare, for example, this entry on Cushing’s Syndome from the Massachusetts General Hospital and Harvard Medical School, and this one, by Gail Adler, MD, PhD, of Brigham and Women’s Hospital and Harvard Medical School. Still another site lists slightly different symptoms, but points out:

Symptoms of Cushing’s syndrome are extensive and can vary from patient to patient.

He ordered a number of blood tests, including rerunning thyroid function tests. The most important, however, will probably be two 24-hour urine collections to test for hypercortisolism. He explained that (as we knew from our own research) the single-point-in-time cortisol test Nichelle had last week was of no value. We also learned that there are cortisol levels below which one is considered normal, and above which clearly show hypercortisolism, but there is a significant “gray area” where a diagnosis may be unclear.

He also said that he didn’t see any symptoms of any other renal or adrenal disfunction.

Nichelle observed that he seemed a bit annoyed (or at least perplexed) that the rheumatologist had told Nichelle she “definitely had a serious endocrine problem.” This may merely have been professional area-of-expertise jealousy, or due to the fact that the rheumatologist did not provide any thoughts on the issue. (I didn’t even notice any discomfort, but Nichelle is much more perceptive than I about such things.)

The samples need to be delivered to Concord, N.H., on Thursday and Friday morning, with blood work being done at those times. We asked if the labs could be done by one of the Dartmouth-Hitchcock labs nearby, but it would have meant waiting another full week after getting a new lab schedule to be approved by Dr. Golding (who is away for a few days)—our fault; we didn’t think of asking until we were partway home. Nichelle is going to try to make the trips herself, if she feels better than today; I’ll act as a backup.

So, with the cortisol tests outstanding, Beth’s Moxie is in a quantum state. Call it Schrödinger’s Soda! (A little non-bio-science Geek humor, there.)

Today Nichelle awoke with another 5.5 pounds of weight increase from yesterday, bringing her current weight to a new record (which I doubt she would want me to publish). We laughed the other day about how I had to keep forcing myself to eat and eat to maintain the sympathetic weight gain.

Other exciting symptoms as of this evening (6:00 p.m.) include, according to Nichelle: “feeling really bad: loads of pain, weak feeling, and the head pain—has been hitting in different sections of my head.”

The Quintessential NaNi

I’ve been searching for that “one” photograph that seems to be the “real” Naomi at this point in her life. I think this is it. (Click to enlarge.) I find this to be difficult with children’s photos. They are so constantly on the move, and rapidly changing, that capturing what we perceive as their typical appearance is difficult.

Here she is, as usual, bright and cheerful, loaded with energy, and has a fire in her eyes. I took this photo (once I could get her to stop jumping and spinning around shouting “Yippee!”) just after I told her we would be going sledding that evening.

Although now that I look at this carefully, I’m not sure her hair is quite right …

(I added the one on the right in April, 2006.)

Hope Deferred (for a Day)

12Hope deferred maketh the heart sick: but when the desire cometh, it is a tree of life.

Proverbs 13:12 (KJV)

Despite our best planning, we spent from 1:30 to 6:00 today not being seen by the endocrinologist. (But it’s not really his fault.)

13Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” 14Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

James 4:13-15 (NIV)

What happened was this:

Nichelle and I arrived at the Dartmouth-Hitchcock Medical Center in Manchester about 9 minutes behind schedule. We’d made one wrong turn, which cost us about four minutes. We tried calling, but no one answered before we were actually headed up the driveway.

For the record, until we actually arrived there, we didn’t know we were going to a medical center. We thought our destination was a doctor’s office of some kind. That was our undoing.

We rushed inside (guessing on an entrance) and started waiting in line. In less than a minute, Nichelle asked a staff member for where we should go. She directed us to another counter down the hall. When we got there, the counter was unstaffed. We decided to follow the signs to the main lobby, and met another staff member on the way who said we needed to register.

We were served fairly quickly at the registration desk. They only had to correct Nichelle’s first name and her last name (yes, Michelle Wilcott :: sigh ::), and look up the insurance three times, ask for her birthdate twice and mine once, then run the co-pay.

Then they sent us upstairs, where we checked in again and sat down. After a few minutes, Nichelle was called, and the nurse explained that we checked in too late for the appointment. I was struck instantly by an unusually strong mixture of extreme disappointment and rage. I actually turned and walked away for about 10 seconds.

They did say that if the next patient did not show up, they would let us in, so we waited. Nichelle spent the next 15 minutes with her head down and eyes closed. I spent that 15 minutes reading, rubbing Nichelle’s back, wishing there were something I could do to help, and mentally reviewing verses about God’s sovereignty.

The nurse came out, and told us the next patient had arrived. She listened to our story, and noted that similar problems had occurred recently, and went back in to find us the number for the medical center person who handles such problems.

During the ride home they phoned us to make another appointment; we were grateful able to get one tomorrow—at the same time of day, but in Concord, rather than Manchester.

I’ll have to take another afternoon off from work, but can make up the time later in the week, or take it as sick time (our company policy allows this; I’m not being a weasel).

God knows what He is doing. It is comforting to know Nichelle will be seen by someone who doesn’t squeeze patients in, but rather insists on giving them proper attention and time.

Nichelle has a new symptom. We’re not sure what they are caused by—they might be tiny hemmorages under the skin—but in several places she’s had tiny, dark brown, circular freckle-like spots appear. She noticed a few yesterday. This morning there were more, and this evening still more. They are definitely increasing in number. One that seems to be just forming (based on location and size) is a reddish color, which leads me to think that they are indeed tiny spots of subcutaneous bleeding. There’s also no external irritation or rash present near them.

The other symptoms, pain, dizziness, fatigue, difficulty walking, burning sensations, severe edema, stabbing pains, painful pressure in the head, etc., all continue for much of every day.