Category: Nichelle’s Weird Illness

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How God answered prayer…

First off, I need to thank each of you for prayers. The way God answered was that He brought us to a doctor that not only listened to the massive list of symptoms but also had questions for us. One of which was why I was taking iron tablets. I told her that I am anemic and she wanted to know why. Doug and I looked at each other and thought, hmm, well, I’m not sure why? (Her question was whether there had ever been an underlying cause determined for the anemia.) She was very thorough and up front and also gave an explanation of why some doctors may have passed me on, mainly due to the extent of the work they would have to do in order to properly diagnose and care for me. Doug and I were quite impressed by her and her honesty. We were told that if she can’t help me, she will do all she can to direct me to someone who can.

After our lengthy interview, when it came time for the physical examination, Doug was about to enter the room and she basically said it wasn’t necessary and that he could wait in her office or back in the waiting room. When all was set, she started off by asking me about our relationship and if Doug is adding any stress to my life. I told her what a great husband I have and what a tremendous help and support he is to me. She then told me that she sensed that and that it was great for him to be there with me, too. Typically, her patients’ husbands tend to leave these visits up to the wife (seeing that she’s a reproductive endocrinologist), and figure that they are all set. Also, many times when the husbands do go to the appointments, she finds that they are not so helpful. Needless to say, she was quite impressed by the care of my husband.

I had six tubes of blood drawn for numerous tests. Some to re-do what has been tested in the past, but others to do what hasn’t been considered yet. I go back in approximately six weeks or sooner, depending on the results. I will call her office on Monday to make a follow-up appointment because her receptionist was gone for the day.

Ah, I forgot to mention that the pain did kick in a great deal while sitting in the waiting room, I was uncomfortable on the trip down, but yikes! did it increase. I was ready to lay down on the floor, because no position in the chair was helping. That lasted for quite sometime, but thankfully stopped. Doug went to grab us some lunch nearby, and brought back a chicken shish kebab wrap and a felafel wrap from a Lebanese restaurant, the Phoenicia, at 240 Cambridge Street, just a block away from where we were. Awesome food! I was only able to finish half of my sandwich, but, by the time the appointment was done, we were both hungry and headed back to eat there. [Doug’s note: I was amazed Nichelle felt up to walking the one-block distance to the restaurant. That put her health—at least at that time of day—better than average, although we did have to walk very slowly.] It was absolutely delicious. We couldn’t finish it all of the food—Felafel, tabooly, meat pie, and spinach pie—and brought plenty back with us.

I do need to thank Sandy, Trish, and Cindy for taking care of our kids for us, too. Thanks again for all that you did for us today.

Doug’s Impressions:

I actually had a little speech planned for Dr. Hall, but didn’t get to use it. Essentially, I intended to ask that she leave no stone unturned to find out what was wrong with Nichelle, and if she believed things were out of her field or specific area of expertise, refer Nichelle to a doctor she knew would do the same. To my delight, Dr. Hall declared almost exactly that, right at the beginning.

We spent a long time in the preliminary interview. We covered a lot of ground. I felt at times like, given the immense amount of information we were trying to convey, that we weren’t communicating perfectly (there are a couple of corrections/clarifications we need to make), but Dr. Hall took all the relevant records from us, and intends to read them. Dr. Hall said Nichelle was, “very observant”: Possible translation—In our increasing desperation to find answers, we’re becoming hypervigilant, and noticing unrelated symptoms which might be meaningless in a larger context. I’ve noticed a little bit of that in Nichelle’s online research. She’ll locate and pass on to me documentation on illnesses that match on one or two symptoms, even though the overall pattern does not match at all. One of the hardest questions to answer was what the most pressing problem is. Do we go back to the odd and persistent fibromyalgia-type problems? How do we divide the fibromyalgia pain from the odd and debilitating symptoms (many of which are pain-related) that occur now?

We still don’t have any real answers. Dr. Hall is not convinced that the problems are endocrinological in nature. (We all believe that they are not all caused by endocrine problems.) It is clear to her that there is not one single diagnosis that would cover everyting. She is also considering some things that have not been looked at, such as an autoimmune disorder, or a hemoglobin problem such as spherocytosis. She also asked quite a few questions about what cortisol tests had been done. I was particularly impressed with her willingness to look at some of the items that we tend to now take for granted, such as Nichelle’s anemia. I can’t remember a test that Nichelle has had that didn’t show anemia, but I don’t think anyone has ever looked for the cause, just as I don’t think anyone has ever followed up on why the anemia hasn’t responded well to iron supplements.

The tests Dr. Hall ordered required drawing six tubes of blood. We wait for the results, and for a follow-up with Dr. Hall some weeks hence.

Nichelle is in very poor health today (Saturday).

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With a thankful heart…

First off, I’d like to thank Debi C. for lending me the book by Amy Carmichael, Rose from Brier; what I’ve read and re-read has been a blessing and a huge encouragement.

A portion of a song that came to Amy C. while amidst great pain and a desire to be with her Fellowship, “Thou hast not that, My child, but Thou has Me, And am not I alone enough for thee? I know it all, know how thy heart was set Upon this joy which is not give yet. And well I know how through the wistful days Thou walkest all the dear familiar ways, As unregarded as a breath of air, But there in love and longing, always there. I know it all; but from thy brier shall blow a rose for others. If it were not so I would have told thee. Come, then, say to Me: My Lord, my Love, I am content with Thee.”

Thank you to Eric and Juana Quinlan for giving me a CD by Twila Paris, entitled, “He is Exalted.” My favorite song—although I love listening to them all—but the one that has stood out the most is, “God is in Control”:

This is no time for fear
This is a time for faith and determination
Don’t lose the vision here
Carried away by motion
Hold on to all that you hide in your heart
There is one thing that has always been true
It holds the world together

God is in control
We believe that His children will not be forsaken
God is in control
We will choose to remember and never be shaken
There is no power above or beside Him, we know
God is in control

History marches on
There is a bottom line drawn across the ages
Culture can make its plan
Oh, but the line never changes
No matter how the deception may fly
There is one thing that has always been true
It will be true forever

He has never let yo down
Why start to worry now?
He is still the Lord of all we see
And He is still the loving Father
Watching over you and me

Another thank you to Beth C. for sending us the sermon by John MacArthur, entitled, “The Role of Suffering” from II Corinthians chapter 12. It was such a powerful message. One of the points he made was that trials serve many purposes, such as the following: To test our faith, to wean us off of worldly things, help us focus on eternal hope, to reveal what we really love, to teach us to value God’s blessing, to enable us to help others who suffer, to produce endurance, to humble us, or to break our confidence. They produce the broken and contrite heart God wants us to have. Another point is that God uses suffering to draw us to Himself. Suffering has a way of increasing and intensifying our prayer life. In II Co. 12:9, “… My grace is sufficient for you …” God doesn’t remove the issue of pain or trouble, but increases the grace He gives. He gives comforting grace in the midst of a trial. Encouraging grace in the midst of pain. A confident grace. In Deut. 33:26 it says He “rides through the heavens to your help.” There will always be sufficient grace to every issue. God doesn’t promise to remove your trouble, pain, etc., but promises to overwhelm it with grace. How wonderful is that? How wonderful, awesome, and powerful our God and Saviour is!!!!!

My God has given me a wonderful husband, who is stronger than he realizes. I thank Him for such a man that is faithful through it all. My kids are indeed a joy and a blessing, most of the time. From the silly things they say to the serious questions they ask. One of my favorite times with them is just sitting and listening to them sing along with the music that plays. What a joy to hear them sing praises to our God. He’s so very good. His provision for us, His loving care, His guidance and His continued mercy. One of my favorite verses is: Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father. But the very hairs of your head are numbered. Fear ye not therefore, ye are more valuable than many sparrows.
—Matthew 10:29-31

I praise God for His love that is shown through family and friends, with their continued prayers and words of encouragement and the many helpful things they do. Thank you to each of you. Thank you for showing me God’s love and your love, too.

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36 Hours / 12 Days and Counting

12 Days and Counting

Endocrinologist 3, with Mass General, has given Nichelle an appointment for May 12 at 1:00 p.m. Nichelle is thrilled. Please pray that this doctor will be determined to find out precisely what is wrong with Nichelle and treat her, or immediately send her to someone who will.

36 Hours

Nichelle experienced about 36 hours of “normal” life this weekend. She was without pain, and had no trouble walking or doing regular activities from Friday afternoon through late Saturday evening. We even got to go to our church visitation program Saturday morning.

She went to church on Sunday morning, but experienced a rapid degradation again. By the end of the service, she needed help getting down the stairs, and needed someone else to drive her home. (I was at home with David, who was sick.)

Nichelle wrote in an e-mail earlier today,

Of course, I was grateful for feeling “normal,” and for being pain-free for the first time in a very long time. I give Praise to God, my Lord and Savior, for His great love and care, and for each of you for your continued love and support and many prayers.

I find Nichelle’s worsening illness is wearing me down (after 13 years with these symptoms appearing periodically, the last 7 of which have been difficult, and the last 2 of which have been extremely disruptive both in symptom severity and percentage of time per year they have been present). I noticed this weekend while she was well that I was dampening out any feeling that might be described as “experiencing hopefulness,” as such feelings have been rewarded repeatedly with crushing disappointment. I still have hope that God will lead us to a treatment eventually, but it seems to have become my own quest to destroy the One Ring—even as we may be getting closer to Mordor.

Addendum: May 2, 2006

My goodness, I was in a funk yesterday! My reading in Spiritual Depression: Its Causes and Its Cure (D. Martyn Lloyd-Jones) coincided perfectly with my mood, and was exactly of what I needed to be reminded. Now I know why it’s taken me so long to get to that particular chapter: God was orchestrating the timing.

All things may seem to be against me ‘to drive me to despair,’ I do not understand what is happening; but I know this, I know that God has so loved me that He sent His only begotten Son into this world for me, I know that while I was an enemy, God sent His only Son to die on the Cross on Calvary’s Hill for me. he has done that for me while I was an enemy, a rebellious alien. I know that the Son of God ‘loved me and gave Himself for me.’ I know that at the cost of His life’s blood I have salvation and that I am a child of God and an heir to everlasting bliss. … Faith reminds itself of what the Scripture calls ‘the exceeding great and precious promises.’

…

I do not suggest that you will be able to understand everything that is happening. You may not have a full explanation of it; but you will know for certain that God is not unconcerned. That is impossible. The One who has done the greatest thing of all for you, must be concerned about you in everything, and though the clouds are thick and you cannot see His face, you know He is there. … Now hold on to that. … Nothing can happen to you but what He allows, I do not care what it may be, some great disappointment, perhaps, or it may be an illness, it may be a tragedy of some sort, I do not know what it is, but you can be certain of this, that God permits that thing to happen to you because it is ultimately for your good.

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Analyzing the Symptoms

A Brief Update

There are no more good days. Occasionally, Nichelle will have a few hours when she is able to be somewhat active, but it appears that even days like our 1/2-day MFA trip are now impossible. The pain is more severe, and Nichelle’s general debilitation is both more severe and the episodes last longer. Walking any real distance is nearly impossible, although she did complete a less-than-30-minute trip to Wal*Mart last week, this is exceptional. There are unexplained symptoms, like the tiny purpura spreading through her skin, as well as inexplicably normal test results, such as for free T4 (one of the thyroid hormones) and cortisol.

It’s very frustrating. Our most dedicated doctor admits that this is outside his specialty (neurology), and other doctors seem unwilling to exert the effort to find the cause of these problems. If we were to diagnose based merely upon symptoms, my conclusion would be hypothyroidism on top of fibromyalgia. However, the hormone tests run so far for hypothyroidism have been negative. (But hormone problems are often difficult to diagnose, and may defy test-based diagnosis for years.)

Symptoms such as she is now suffering go back all the way to 1992, although they have been increasing in severity enough to be very troublesome for about the last 7 years, the last two years have been much worse. More detail and history are available by clicking on the fibromyalgia category for our BLOG.

Nichelle has copies now of most of her medical records. We are leaving no stone unturned. The common theme expressed by doctors is, “I dunno.”

On the bright side, the illness did make shopping for Nichelle’s birthday presents easy: DVDs from Amazon.

By the way, if you haven’t read this post about Nichelle, you should!

Symptom Frequency Possible Diagnoses
Severe edema (fluid shift) with weight fluctuations of 5 lbs. in the course of a day. The swelling varies in intensity, especially around the face, but is always bad. Continuing. Cushing’s Syndrome, Hypothyroidism.
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. Weight tends to suddenly shoot up every few weeks. Cushing’s Syndrome, Hypothyroidism, medication interactions (from the tricyclics used to prevent migraines and sleep problems).
Burning sensations, primarily in the hips and back. Many hours each day. Fibromyalgia, hypocalcemia, secondary hyperparathyroidism.
Pain. Moderate to severe 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. Daily. Fibromyalgia, migraines, hypocalcemia, myofascial pain syndrome.
Difficulty walking or standing. Constant. Currently able to maintain only a decreasingly short amount of activity at a time. Unknown.
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). Daily, when basal health is temporarily good enough to demonstrate a decline. Hypothyroidism, fibromyalgia.
Extreme discomfort in having anything touching the skin on her arms. (Skin sensitivity.). Weekly. Unknown.
Pins-and-needles sensations all over, especially the head. Daily. Fibromyalgia, secondary hyperparathyroidism.
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 migraines.). Several times a week. Hypothyroidism, fibromyalgia, hypocalcemia.
Sudden or prolonged exhaustion. Nearly daily. Hypothyroidism, fibromyalgia.
Painful, unusually strong sensitivity to having anything cold come in contact with skin. Constant. Fibromyalgia.
Feeling very hot or very cold not in conjunction with actual temperature. (Feeling extremely cold often immediately precedes episodes of severe pain.) Night sweats. Daily. Hypothyroidism.
Occasional inability to grip small items, such as table utensils. A few times per month. Unknown.
Inability to raise arms or hold an item such as a cell phone against her ear or face. Constant. Cushing’s syndrome.
Difficulty putting weight on wrists to support. Constant. Possible bone problems, hypocalcemia, secondary hyperparathyroidism.
Hair breakage/brittle hair. Hair loss on arms, legs, and hands. Continuing. Hypothyroidism.
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. (I had previously labeled these as purpura, but Dr. Hall told us that purpura describes such spots only when they are caused by platelet problems.) Continuing to increase in number. Unknown.
Severe pain in the bones of her wrists, feet, collarbone, and ribs. Constant. Secondary hyperparathyroidism, possible bone problems, hypocalcemia.
Stretch marks and skin discoloration over an ever-increasing number of areas. Continuing to worsen. Cushing’s Syndrome, may be secondary to the significant edema and weight gain.
Dizziness. Several times a day. Fibromyalgia.
Nausea. Several hours each day. Hypothyroidism, fibromyalgia.
Low body temperature (1 degree or more below normal) most of the time. Constant. One or twice a week temperature approaches (but does not reach) normal. Hypothyroidism.
Low calcium level (hypocalcemia). Current. Vitamin D deficiency, parathyroid problems.
High PTH (Human parathyroid hormone) level. Current. Parathyroid problems, could be secondary to vitamin D deficiency.

The official diagnoses, which have not helped with a treatment or identified the causes (most are merely descriptions of symptoms), for the most part, the following:

  • Fibromyalgia
  • Myofascial pain syndrome
  • Secondary hyperparathyroidism
  • Vitamin D deficiency
  • Hypocalcemia (probably caused by vitamin D deficiency or parathyroid problems)
  • Neurosomatic syndrome
  • Periodic limb movement disorder (believed being successfully prevented with medication)

What We’ve [Mostly] Ruled Out:

Fibromyalgia is, itself, generally diagnosed by ruling out everything for which a definitive clinical test exists. Here are the few other things that have been ruled out:

  • Lupus (this has been repeatedly tested for about the past 10 years; it has always been negative)
  • Heart problems/heart disease
  • Diabetes
  • Sickle cell anemia
  • West Nile virus
  • Lyme disease

In addition, Cushing’s Syndrome seems less likely than hypothyroidism, due to the fact that some classic symptoms of Cushing’s are absent.

This analysis is hardly complete; there are certainly other possible explanations of these symptoms. If you have other suggestions, please let us know. Personally, I think it’s just Munchausen Syndrome. (Or maybe it’s Munchausen Syndrome by Proxy, just like in The Sixth Sense.)

At any rate, keep praying.

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Another Dead End: Endocrinologist II

Nichelle heard back from the most recent endocrinologist’s office. Here are his notes:

  • No further assessment
  • Fasting plasma glucose at some point in the future, not running any more tests.
  • Maybe another fasting glucose—talk to the PCP about that
  • Can find nothing from an endocrine standpoint

However, the office is checking on a referral to an endocrinologist in Boston.

This is really, really frustrating. Hypothyroidism on top of fibromyalgia explains nearly all of Nichelle’s symptoms. Every doctor except the endocrinologists Nichelle has seen seems to think this exhibits as a clearly endocrinological problem.

I’m going for a walk.

Later news:

Nichelle has been referred to a specialist in Boston. The endocrinologist did agree to the referral, and will be following up on the results. This is some progress.

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Another Appointment … Rheumatologist II

Today I had my appointment with the new rheumatologist. He’s requesting all records from three different doctors. I was given a new pain med and taken off one that I was recently given by the ER doctor (although I’ve only taken it once). I will have a follow-up appointment in four weeks.

He has no explanation for several of my symptoms, but states the other problems that I’m having is fibromyalgia. Here’s a great site to find out more about fibromyalgia: http://www.fibromyalgia-symptoms.org.

The doctor today, too, agrees that the other problems that I’m having are endocrine. I am also waiting to hear back from the new endocrinologist. He wanted to go over my tests results from the first endocrinologist, who claimed that I didn’t have an endocrine problem!

I have been checking my temperature for several days now and the highest it’s been is 98.0 and the lowest was 96.3. The typical range in 97.2 to 97.7.

Next week I have an appointment at the pain management clinic.

Waiting, praying, hurting, and crying, but through it all we know God is ultimately in control and already knows the outcome. Thank you for your continued encouragement and prayers.

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Endocrinologist II: Not Much to Tell (Yet)

Nichelle was very impressed with the endocrinologist she visited today. She described him “as thorough as Dr. Rescigno,” which is a huge compliment.

Dr. Bhaghayath took an interest in everything Nichelle brought in (unlike the last two doctors she has seen), including things that seemed “off-topic,” such as the bone scan results. He was amazed by the photos showing the water retention. He reviewed our symptom list, and commented that Nichelle had “a lot of things going on.” He wanted to know if Nichelle had a family history of thyroid problems. (Getting a family medical history for either one of us is a rather amusing undertaking.)

Nichelle did ask him to confirm any connection between the vitamin D deficiency and the serious symptoms she is now experiencing. As we expected, he said they were “totally separate,” but Nichelle wanted a second opinion.

Unfortunately, some critical records were not sent over, despite the fact that Nichelle checked on them this morning. His concern is that (just as Beth has suggested), critical endocrinology tests were missed, and only the cursory levels were measured, especially for thyroid function.

He’s going to examine the records, after Nichelle kicks some butt to get them sent over, and call Nichelle back. (This appears to be a failure in the medical records department, rather than the doctor’s office, for a change.)

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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

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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.

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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.