Category: Nichelle

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Moultonborough, 2006

What a blessing! At the end of July, we spent a week at the Varney/Tingley cabin in Moultonborough, New Hampshire. It was, quite possibly, our best-ever trip there.

We saw two different foxes, a huge heron, and a loon, all at or near the cabin. (My sister saw a bear last year, although we missed it, but we keep hoping and watching.)

(Above) This is the cabin we stay in. It’s not very large, but has running water (from the pond) and a bathroom with a shower and commode, which to me makes the difference between roughing it and really living. I used to vacation here when I was young, and loved it. (The same family still owns the property.) It brings back powerful memories of my childhood, especially time with my parents. So much of the property remains preserved just as I remember it, from the beautiful interior woodwork on the doors and door frames, to the electrical wiring my father did, right down to the way things smell.

When we got there this year, I noticed that the water pump was running nearly constantly. The pump draws water from the pond and pressurizes it in a small tank to provide running water for washing dishes, showers, etc. I checked it out, and you could hear the water rushing back down the pipe after the pump would reach proper pressure, and in a few seconds it would start up again. Thinking the check valve at the bottom of the water line was stuck open, I went out in the Berri Belle 2 (a rowboat), and followed the water line back into the pond, discovering that it had a 3- or 4-inch split in it, though which the water was pouring out. I tried to remove the split section that night, but couldn’t get the coupling apart. The next morning I got a new coupling at the local hardware store, and was able to cut out the damaged section and reattach everything—and I didn’t even need to re-prime the pump. Everything was working perfectly. I was so proud, and kept thinking of all the things my Dad used to fix. (He used to barter projects at the cabin for the price of renting it. In fact, he and my Mom installed the original water system many, many years ago.)

But, I should have kept Proverbs in mind. About 24 hours later, I checked the pump itself, and noticed it was dripping, something it definitely had not been doing the day before. I couldn’t find the source of the leak, so I kept it under observation. By that evening, the leak had become a small spray, and we called the Tingleys. We agreed I could try to patch it, but if it failed, we would have to use buckets for the water. I bought some epoxy-like substance that was used for waterproof applications, and was thrilled that the patch held. It dripped a bit, but that seemed acceptable. Unfortunately, the split in the pump casing was getting bigger, and my first patch blew off the next day. I patched it again, and we ran the pump only when we were actively using it, although I had to prime it several times. The second patch lasted until the day before we were going to leave, at which point I gave up and started carrying buckets. The cowling over the impeller had split at the point it was seamed in manufacture, and would have to be replaced. (I think due to the age of the pump, 25-35 years, they ended up replacing it.) After spending so much time listening for the pump’s operation, I kept “hearing” it running in my imagination for a week after we returned home!

(Above) This is the primary beaver dam that made Berry Pond. There are at least two beaver dams that created Berry Pond. When I explained to NaNi after one of our canoe trips that beavers made the pond, she replied, “Actually, God did.” Never argue theology with a 2-year-old.

One day we drove up to the Kangamangus (or Kancamagus—I’ve seen both spellings) Highway, which runs through the White Mountain National Forest, mostly parallel to the Swift River. To our delight and surprise, Eric and Kate Neville’s path happened to run across ours while we stopped to play in the river and have a picnic. Eric and I worked at MediVation over five years ago, and we’ve stayed in contact, but not seen each other since. What an amazing coincidence, especially considering how little time each of us spent in that particular location! Eric took this picture for us.

Nichelle did almost all the driving all week, including the trip there and back, even at night. She loves driving, and hadn’t been able to do it in a long time, so she was eager to see how much she could do. When I got home, it actually took me a while to get accustomed to driving my car again.

We love Clark’s Trading Post. (Above) Here Naomi and I attack Nichelle, who was standing on the side, from our bumper boat. Naomi hated having other people squirt her, although she very much enjoyed attacking them! Clark’s even has stand-alone motorized squirt guns set up along the sides of the bumper boat pool, so those not in the water can join in the fun.

I can’t quite believe Clark’s charges only $12 for admission. (Above) Isaac tried their climbing wall well over 15 times, something that most places would charge $5 a pop for. He didn’t make it to the top, but really loved it. I tried it too, but couldn’t steel myself to go any higher than Isaac. Next year …

Of course, one of the best things about the whole week was that Nichelle was feeling good for the first time since November, and was able to be active and participate in everything we did all week. What a thrill. It was not many weeks ago that Isaac broke down crying, when he realized (based on her condition for months) that Mom wouldn’t be able to do anything with us on our vacation. We praise God He has allowed Nichelle’s recent good health. It possible that the vitamin D deficiency causes her problems, but we won’t know until many months from now.

(Above) Clark’s has a costume photo studio, and Nichelle and NaNi love it. (The boys weren’t interested, as usual.) This was the first picture of Naomi that Nichelle picked out. Later on, she had me come back to the photo studio because she couldn’t decide if she should have gotten the more serious picture of Naomi. After some haggling, we bought that other one as well, and it has become our favorite.

The boys and NaNi love the paddleboat. (I thought it was great the years we used it as well.) We did almost flip it over once when David, Isaac, and I were all switching places and standing on the back.

(Above) This seaplane landed on the pond while we were there, which surprised me, because it was my understanding that the town prohibited that, which was why motorized craft aren’t allowed on the pond. It took off again as we were packing up to head back home.

We don’t watch television while we’re there, although I was tempted to turn on the TV and demonstrate to the kids what television in a mountainous area without cable is like. When we’re not outside, we read or play board games. Scrabble was very popular this year. Nichelle taught Isaac and David to play. One big difference, though, was that Nichelle, who normally destroys her opponents in Scrabble, lost five games in a row (four of them to me). After years of getting demolished by her, I finally seem to have “caught on” to the game, and was able to score some major victories by strategic word placement.

Inspired by the Seyranyan Family Circus, the kids did some acrobatics of their own in the days following our trip to Clark’s Trading Post. The Seyranyan family, from Moscow, is a must-see performance (they don’t perform on Fridays, so plan your trip accordingly). (Above) The kids invented this four-person pile-up one morning.

NaNi learned to row—sort of. I have a picture like this of me and my Dad, somewhere in a photo album my sister Joyce gave us.

We all spent a lot of time swimming, especially off of the raft that’s placed out in the deeper (about 12 feet) water. Naomi was no exception, swimming for hours at a time with her training ring, and occasionally using just a noodle (with very close supervision) or her lifejacket. She even jumped off the raft a few times.

(Above) David caught his first fish in three years. We discovered that live bait (worms) just can’t be beat for catching sunfish. (I don’t know much about fishing, and the kids have enjoyed learning as we go.) He caught this fish just after introducing himself to one of the families who lives on the pond. They were pulling fish out right and left, and invited him to have a try. I am always impressed with his social skills.

(Above) Naomi caught her first fish this year. She was absolutely thrilled. She caught 17 sunfish in about an hour and a half, all by herself. Isaac and I baited her hook and helped remove the fish. At one point, she turned to me and said, “I couldn’t have done this without you. Thank you, Daddy,” and gave me a big hug. She can be so sweet it melts my heart.

(Above) Isaac insisted this was a pike, but it appears to be a pickerel. (He’s not often wrong about biology or zooology—or in this case ichthyology.) It was Isaac’s big catch of the week. Right now it’s at home in our freezer, waiting for Nichelle to prepare it. We let the kids keep one fish each year to eat, although David’s sunfish were not eating-worthy, so he has accepted a single bite of Isaac’s fish when it is ready instead. I am also glad Nichelle is willing and able to gut, clean, and cook the fish, because I’m not sure I have the stomach for it. (If I ever travel in time, I will be sure to go forward, instead of into the past, because I have zero nontechnological skills.)

(Above) This part of the pond, opposite the beaver dam, we hadn’t explored before, although we’d been through many of the channels the beavers keep open to the east of there. The morning I found the dam I went out in the kayak, and got really close to the heron several times. (I wasn’t trying to bother him—he kept flying ahead of me and perching along the route I was taking. Sadly, I hadn’t brought my camera. Herons are huge, and surprisingly graceful in what appears to be a flight in slow-motion.

Berry Pond is absolutely lovely, especially on a clear day or at sunset. We also enjoy going out on the water at night, especially when the bats are out hunting. When it’s clear and one can normally see our own spiral arm of the “Milky Way.” (Personally, I think that’s a stupid name for our galaxy; if I ever travel to another galaxy, I’m going to tell them I’m from Andromeda.)

Several times a week NaNi announces, “I want to go back to the cabin!” as do Isaac and David. It’s a sentiment we all share.

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Adventures in Movement

For the past several weeks I had been longing to take Naomi—the boys, too—but especially Naomi, to the farm/petting zoo in Candia, N.H. Well, today, just three hours before they closed, we got everyone together and headed to Charmingfare Farm.

We had been there in the past for their hay rides and bonfires on a couple of church activities. This time we were able to explore the whole farm. That’s right, I said, “we”! I made it through, and saw all the animals, too, I walked the whole way. Of course I was a bit sluggish by the end, but it was worth it. We had a great time. We were also able to get tickets for a pony ride for each of the kids. They loved that. We have loads of pictures and video on all that took place. Watching the kids feed the animals was great as well, especially the goats.

On the way home, I suggested to Doug that we call the Sohmer family and see if we can visit. It’s so rare that we make it up to their area. So very glad we were able to drop in and say hello. I was thinking it was going to be a short visit, but we ended up hanging out until 9:30. How impressive is that! We got to meet their newest family member, Gabriella Danielle Li Ying Sohmer. What a sweetie. Doug took lots of pictures of her, too. She’s newly adopted, just two weeks or less now, from China. What a wonderful story they have to share. It was indeed a great blessing to be with the Sohmers again. Thank you guys for your hospitality, too. Love you.

Not so bad for me, it’s nearly 11 p.m. and I’m doing quite well, and for all of that the praise goes to God. What a blessing to be able to do more than just the “little things” again. For all that have been praying for us, thank you. 🙂

Sunday morning came and I was able to join the family and go to church even after a busy day on Saturday. Last week and also today, I decided to go to junior church with Doug and help teach. What a blessing! I haven’t been in class with the kids in many, many months. Hearing their sweet voices singing praises … how I’ve missed being with them, too. I had hoped to go on another shopping trip this afternoon, but the pain was back and said to me, “Yeah, right.”

To be with my church family, to hear preaching (in person), to give prayer requests and to take those that are shared, to give praise and to hear how God is working in the lives of other members, to be able to give and receive a hug and words of encouragement, to be a blessing and to receive one. To all of those things, I give thanks and praise to God for each opportunity that I am able to partake in a service.

[Note from Doug: While Nichelle was feeling better, I was worse than I’d been in years. More on that later … We’ll try to get pictures up tomorrow night.]

Another great day on Monday. Last night at about 10:30 I finally layed down to rest a bit and realized that I had gone the entire day, even with a much earlier start to my day and worked and cleaned without the need to nap. I’m of course thrilled. Keep the prayers coming. 🙂

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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.

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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.

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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.

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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.)

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Moving, walking, running … little things for some, but not to me …

How wonderful it was to wake up yesterday morning feeling no pain and being energerized!

This week in school for the elementary grades is “spirit week.” Each day the kids get to dress up according to the predetermined selection of ideas. “Hats, glasses and slipper day” was yesterday, and today was mixed-match day. Yesterday, I was able to run downstairs and lie on the floor looking for stuff under their beds, helping the kids locate items that were deep underneath. That, of course, is a big deal. And I was able to get back up without help. On Sunday night, although in some pain, I was able to help Isaac make a meat eating plant (pitcher plant) for costume day. You’ll see the outcome [Doug: Pictures coming tonight.] and he won second place, too. I was thankful that I was able to do that with him, too. David was a fireman, and he had the costume for that, easy work there. Today being mixed-match day, the kids needed assistance buttoning up their clothes backwards, wearing weird ties, suspenders and a bow tie, I believe from the 70’s. Ah, the ties may have been from that era as well. [Doug: I’ve kept a couple of boxes of “costume stuff” for the past nearly two decades. Weird ties are easy to find at any thrift store.] It was great fun. Doug did take pictures of their final results, and I’m sure will get the pictures posted soon. [Doug: Nag, nag, nag …] I’m still feeling well, too.

On one of the days that I was unable to get the kids from school, Isaac and David were eager to watch a new movie that Doug had bought for Isaac the night before, and Naomi joined them. John hung out with me, and we talked for—what I was amazed at—the entire length of the movie. We were just talking about a lot of things/issues. It was great to spend that length of time with him and hearing what God is showing him. What a blessing.

After Naomi got up this morning, I went and sat down with her in her room and just had a praise and worship time in song. I sing along with CDs that we have, but I haven’t just belted out song after song by memory in such a long time. How I long to be back in choir again and singing specials, but for now, I pray the songs continue to come back to memory again, so such a time or praise can be had again.

Something else I was able to do was play with Naomi yesterday in the backyard with her on the swingset/gym set with the monkeybars and “clubhouse.” She is now able to climb completely up to the clubhouse and get down without help. That part is at least 7 feet high. That’s pretty impressive climbing skill for a 2 1/2 yr. old. [Doug: You should see her climb down the center of the ladder assembly; she hoists herself on both arms, legs flailing, and pretends-screaming.] Naomi also for the first time yesterday used the monkeybars. I was under her, of course, for assistance if necessary. She was able to do three rungs by herself. Oh, she also scales the poles on the indoor gym equipement we have. Her upper body strength is amazing, too. I think Doug took pictures of those. [Doug: I have video of the clubhouse climb, but no pictures.]

Doug again, has been amazingly helpful and quite busy. Doing all he can for us. He joked with me that God has blessed me with all the grace. He’s given it to each of us in different ways and I can see that in the kids and in Doug. They have each had to go through a lot, and with more to come, a couple of good days so far, but…. Many people will say, “I don’t know how you can do it,” and that can be said to each person in my family—but the answer is the same, in my eyes anyway. It’s by God’s grace and that alone. For the kids to go about and do things, at times for themselves or just with little help, not having a Mom to do the typical Mom things I once did, can be hard, and the same goes for Doug. The things he’s taken on and does great with are excellent.

This past Saturday, Phil was up visiting and he and Doug went out in search of a new TV. [Doug: We weren’t really searching; I’d already done the research via Consumer Reports and a number of other online product reviews. Conclusion: The 34″ Sony WEGA HDTV is amazing, and, although smaller, exceeds plasma TVs by a huge amount in quality, at a much, much cheaper price.] They found one and it’s awesome. I got to operate it yesterday for the first time. Hadn’t been out of my room since Sunday, except to get a couple of things and then return. It’s also been great seeing Steve Deyesso again, too. He was around one day early enough to pick up the kids for me. David remembered his face, but couldn’t come up with the name. Naomi played the shy girl for a while, but finally came around. Now when he visits, she’s her typical sweet self and goes right to him.

I thank God and praise Him for the grace and strength He has given through this illness and again thank the many of you who have helped for your care, many prayers, and for the assistance you given.

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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.