Category: Nichelle’s Weird Illness

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Body … Built!

Nichelle with her trophy at the 2009 Granite State Open Bodybuilding Championship
Nichelle with her trophy at the 2009 Granite State Open Bodybuilding Championship

Amidst a very busy Saturday, Nichelle competed in the 2009 Granite State Bodybuilding Championship in Dover, N.H. We were amazed by how much she’s improved since her last competition. I was particularly impressed with her onstage presence … she didn’t appear nervous at all, and performed her solo routine perfectly, despite having her toes cramp up.

Nichelle rocks! (And even though she can kill me with her pinkie, I’m saying it because it’s true.)

Charlie Dunn took far better pictures than I could have. We’ll post more when we get those.

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This is why we never argue at home.
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Nichelle: The Return of the Twins

[Note: I am keeping this updated via the comments. You will want to read them for the latest status.]

For just over a week now, the symptoms Nichelle has not experienced in years (for more than very brief periods of time) have been plaguing her again. These include sharp pains in various parts of her body, strange sensations in her head, abnormal exhaustion, and odd sensations of temperature. When these strike, it becomes impossible for her to lead the active life she has enjoyed for the past few years. At times the pain has even been bad enough for her to dig into our hoarded Vicodin supply. We call these pains “The Twins: Pain and Agony.”

For example, today she awoke in apparently perfect condition, and was able to get in a full Tao-Bo workout and her strength training. However, by mid-afternoon, her head began feeling foggy, and the pains had begun. On Sunday, she again began the morning fine, but by the end of our church service, did not trust herself to drive home.

A return of these dreaded symptoms was not something we anticipated. Nichelle has had the additional struggle of facing the possibility that this is back to stay for some unknown length of time.

Although we are certain that these have a hormonal component, we believed that a vitamin D deficiency was the cause of these difficulties. Nichelle has been on a high dose of vitamin D for the past few years, which appears to have kept the symptoms at bay. Nichelle had blood drawn on Saturday, and has an appointment to go over the results tomorrow morning. If it is a problem with vitamin D, it should be easy to correct. If that isn’t the problem, we would be back at the inexplicable and difficult state we were in a few years ago.

Clearly this is God’s path for us, and we will endeavor to learn from it and glorify Him, but please pray that Nichelle will be back to normal soon.

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Mommy’s Feeling Better!

This shows what it is like for us to have Nichelle feeling better.

For the record, this photo is what I said Nichelle should post to accompany her description of her health. I think the only reason she didn’t actually post the photo is that she wanted to play World of WarCraft.

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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.