Home Life – Page 15 – Wilcox Family BLOG

March 21, 2006

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.

March 14, 2006

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!?”

March 10, 2006

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.

March 8, 2006

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 Cushingâ€™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.”

March 6, 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.

February 25, 2006

Life Is Swell

Nichelle has requested that I post a few photos to show the extent of the swelling she is dealing with. We actually have one or two photos that are worse, but she doesn’t want those posted.

Since the return of the fibromyalgia symptoms in force, about the time NaNi was weaned, Nichelle has battled rather significant swelling at various times. This winter, it became much worse. At best, the swelling is bad; typically it is horrible.

Note the dramatic difference in the leftmost photo with the middle photo. These were taken only two days apart, on December 25 and 27, 2005, respectively. These primarily show the face, but the swelling involves the whole body. On most days, the swelling is very significant, somewhere between the rightmost photo and the middle photo.

We are awaiting an endocrinology appointment in about a week. The previous endocrinologist to whom Nichelle was referred refused to see her because there wasn’t anything in her records to indicate an endocrinological problem (for the most part, until recently, the swelling hasn’t been our biggest focus). A cardiologist she visited told her, “Sometimes my patients have swelling in their legs and ankles when they return from cruises because of all the high-sodium food.” Our excellent neurologist was more perceptive. Nichelle had brought these photos in to show him—he was stunned. He also pointed out that the swelling alone can cause a great deal of pain.

Our voluntary medical advisor/patient advocate Beth suspects Cushing’s Syndrome or some form of hypercortisolism. So far, Nichelle’s symptoms are consistent with that, including stretch marks on the skin in many places, and swelling varying in degree at different times of the day.

Nichelle spent a couple of hours last night going through photos from the past three years. There are obvious periods lasting several months when the swelling was very bad, and times when it was mostly gone. In general, the very bad swelling lasted much longer than the times without. There’s also a clear increase, over time, in what we might call “base level” swelling, but even within that ever-raising baseline, there are days when it is worse than others, as the photos above show.

I had actually forgotten how much smaller she was even within the past year. No amount of exercise or dieting seemed to help, either. She lost 30 pounds (after Naomi was born) doing the South Beach Diet, and was intensely exercising for an hour every day. Neither one of these things prevented the swelling or the fibromyalgia symptoms from returning, and exercise is supposed to be a very effective long-term treatment for fibromyalgia.

I’ve created a new category on the BLOG for posts related to fibromyalgia. It’s available on the categories list at the right, or from the bottom of any post classified as such.

February 21, 2006

Geek Humor @ H0//3

Tonight I was reviewing science notes with Isaac (click-and-drag to highlight my answers with your mouse to reveal them):

Q: What’s the densest element?
A: Osmium (actually, it’s a tie between Osmium and Iridium)
My answer: Fifth graderum.

I also dug up Tom Leher’s famous “The Elements Song.” You can hear it attached to a clever Flash animation here, or download the MP3 yourself.

And we had some fun because Isaac couldn’t remember:

Q: What is the most commonly occurring transuranium element?
A: Plutonium.

… which led to me mimicking bits of Doc Brown (Christopher Lloyd) from Back to the Future.

Doc Brown: “I’m sure that in 1985 plutonium is available in every corner drugstore, but in 1955, it’s a little hard to come by.”

Then Isaac confounded me with this one:

Q: What kind of tree did the mad scientist plant?
A: Chemis-try!

So I added:

Q: And what kind of tree did his mathemetician wife plant next to it?
A: Geome-try!

February 15, 2006

Pain

Beyond the significant swelling, Nichelle’s life seems to be defined ever more by pain. On Valentine’s Day she had a “good day”—the pain was only mild for much of the daylight hours, and she enjoyed being able to do some work around the house. By suppertime, though, her pain had started to return. Walking became markedly difficult. By 9:00 or 10:00 the pain was steady and even more severe.

Tonight was particularly troubling. Nichelle was feeling pretty good until late afternoon, and was looking forward to attending the midweek Bible study. At 5:30, she announced that she needed to get dinner on and then take a nap. By the time I left work, she determined that she wasn’t going anywhere. By the time I got home to pick up the kids for church, she was having severe pain in her left leg, and remained virtually immobile during the two hours we were out at church, because she (and Nichelle is not one to exaggerate) was afraid if she got off the couch, she’d fall down and not be able to get up.

About the time the kids were being put to bed, the pain became extreme. She took two of the pain medications she has been prescribed, but normally does not use. They didn’t do much. The pain in one leg spread to the other.

Then the head pains started. These were awful.

For ten minutes at a time, over the space of more than half an hour, Nichelle is racked with sharp head pains that almost defy description. Every few seconds she convulses, stiffly curling up, and manages somehow to stifle her cries of agony. Tears well up in her eyes. Her breathing becomes rapid. For a few minutes these pains subside, and then they return.

I kneel beside her, gently clutching her hand, my own body heaving with sobs I cannot control. “I love you,” she whispers quietly when the pains relent for a few moments. I weep even more.

After what the clock says is only an hour, the stabbing pains have passed. Nichelle sits up for the first time all evening.

Perhaps the rest of the night will bring some degree of comfort.

Editor’s note: Thankfully, attacks this severe don’t happen every day, but they do seem to come a couple of times a week, and similar attacks of lesser severity do come every day. The tiring, debilitating pain is there almost always, though. Nichelle took the kids to Wal*Mart on Monday night, for a very quick trip. When she got back she said, “You know, there’s no way I could make it through the [grocery] shopping.” (I knew that—it’s why I’ve been doing the grocery shopping for the past few months.)

Keywords: Fibromyalgia, swelling, severe pain

February 12, 2006

Witness the Evidence, Ye Doubters

I wrote this in an earlier post:

We have been leaving our sleds out most of the winter as offerings to the snow gods. So far it has been working, although I had to correct the kids on making the proper offering. Scattering the toboggans about the yard is not the way to get the snow godsâ€™ attention: One must place the sleds vertically, up against the deck or porch railing, as if ready for instant use. You donâ€™t want to get rain all winter, do you?

I offer hear clear photographic evidence that such beliefs are indeed rational:

Above left: Our offering to the snow gods, carefully placed yesterday morning.

Above right: The same scene less than 24 hours later.

February 11, 2006

Naomi’s Stories

NaNi is indeed a delight. She’s started to put together stories. Last night she said, “See Uncle Phil. Rocket ship. Knock, knock, knock.” (You want to visit Uncle Phil, and you’ll take a rocket ship to get to his house, and knock on the door?) “Yes!”

She’s always been fascinated with her clothes that have pockets. Just before bed she had her hands in her pockets, and sighed, “No money.” I laughed. “Two pockets,” she announced. She’s learning how to identify quantities.

Earlier tonight the little weasel was trying to get into my pocket. Are you trying to get my wallet? “Yes, Daddy.” “Why?” She jumped up and down with glee: “Credit cards!” Sometimes she’s too smart.