What the heck is lupus?

Six months ago when I saw an internist about my thyroid problem, he mentioned that my blood work showed some antibodies in my blood that could indicate lupus, but told me not to Google it because just about everyone could convince themselves that they have lupus!  He said we'd treat my thyroid and then see how I felt, and what my blood work looked like. 

By November, now on synthetic thyroid hormone, my thyroid levels were A-ok, but I was still feeling almost the same:  needing to go to bed very early and always feeling behind on sleep.  Even when I slept pretty well at night, I almost always felt tired.  The doctor started me on some medication for lupus (called Plaquenil) and said if it works, that would mean I definitely have lupus.

By my next appointment in December, I felt about the same, only less joint pain.  (Arthritis is a common symptom of lupus, and I've had arthritis since I was 12, although once I reached adulthood it didn't need treatment anymore.)  But the difference was so minute that I was guessing--hoping!--I didn't have lupus.  But at my appointment the doctor reported on some blood work I'd had done (low complement levels--I didn't know what that was either), and said that supports a diagnosis of lupus.  The good news was that I don't have the life-threatening blood-clotting disease that can go along with lupus.  Well, good.

When I got home I felt a little emotional about my diagnosis.  If my tiredness weren't due to lupus, I figured I could find out what the problem was, treat it, and get back to normal.  But the diagnosis forced me to acknowledge that I've got this baggage to carry for the rest of my life.  Once I got through the door, the kids were clamouring for my attention, as usual, and I couldn't sit and talk to Paul right away.  I couldn't wait to tell him, but I had to, at least for a few minutes.  But I got a great hug from him to tide me over until then.  It felt so good.  His hugs have been so soothing to me lately!

You may be wondering, what the heck is lupus?  I hadn't done serious research about it yet because I really didn't want to have the disease!  Here's some information from the American Autoimmune Related Disease Association's website:

Lupus is a chronic autoimmune disease in which the body immune system, instead of serving its normal protective function, forms antibodies that attack healthy tissues and organs. For many people, lupus may be a mild disease affecting only a few body organs; for others, it may cause serious and even life-threatening problems. There are several types of lupus.

It goes on. It often attacks the kidneys, but my kidneys are fine.  It often causes a rash, and I have no rash.  (Psoriasis doesn't count.)  My doctor says that for most people, the symptoms are like mine:  just tiredness and joint pain.  My joint pain is very manageable.  I'm working on the tiredness part.

Lately I've appreciated not being more physically limited than I am.  Our family went on an outing to ride the monorail last Saturday.  They'd never been on a real train and Emily requested this outing for her birthday.  We had a great time, and although I was a little tired and a little motion sick, I felt grateful to be well enough to go along on the outing and see my kids enjoy themselves.  I think I need to appreciate what I have and let go of the frustration I've experienced about not feeling as good as I once did.  That is a process that I expect will take some time.

Emily's 10th Birthday

Today Emily turns 10.  She invited a friend and we had a small party, and we decorated our graham cracker "gingerbread" houses as part of the party.

One reason I love my kids' birthdays is that I think about when they were born and how much I've enjoyed having them in the family.  It really does feel like 10 years ago that Emily came to us.  A lot has changed.  It's been fun to see her change. She's still a delightful girl!  We love her.

Paul made her a fairy cake

A fairy

Pretty necklace from Grandma Winterton

A dollar for each year, from Grandma Finlayson

A note saying she's getting a pedicure with Mom next week!

Funny card from Grandma Winterton

Jacob kept saying, "That's cute!" when he added candy to his house.  He declared it finished after a few minutes

Emily's masterpiece

Paul's candy dog and cat

Diagnosis

This past week I had my doctor's appointment to follow-up on my thyroid tests.  The diagnosis:  postpartum thyroiditis, an irritation of the thyroid due to pregnancy and childbirth.  In my case, first the thyroid was releasing too much thyroid hormone because antibodies damaged the thyroid follicles, and now, because of that damage, I'm slightly hypothyroid; the cells aren't making enough thyroid hormone (but they're coming close, I'm happy to know.  But I still need a lot of extra sleep--that's my main symptom.).  (Previously I was thought to have hyperthyroidism because at that time, my blood work indicated too-high levels of  thyroid hormones.)  So a couple days ago I started taking synthetic thyroid hormone.  I've read that many people with this type of thyroiditis fully recover.

But I also have this thyroid nodule to deal with.  I'll have a biopsy of it in a couple of weeks and if it looks suspicious, out will come all or half of my thyroid.  They seem to think this is likely because they already had me schedule an pre-surgery evaluation with an ENT who would do the surgery.  Seemed like jumping the gun a little bit since I hadn't even had the biopsy, so I made the appointment for two days AFTER the biopsy, just to keep the order of things as I understand them.

So far the course of testing and treatment I've received agrees with literature I've read.  But how experienced are the pathologists at the military hospital that will analyze my biospy? and how well will my internist be able to monitor my thyroid in the long term?  I'm reading a good book about the diagnosis and treatment of thyroid disorders* that is  helping me form specific questions, particularly about my test results.  I really wanted my doctor to explain everything he could that was revealed by my radioactive iodine uptake and test.  I was dying to analyze it all with him, and I wish I had read this book before my appointment so I knew what to ask.

So, come tomorrow morning (Monday), I'm going to work on getting a copy of my medical record and finding an endocrinologist off-base that specializes in thyroid disorders (hopefully one that speaks good English).  There's an excellent university hospital off base that I have in mind.  Perhaps it would be better to get the biopsy done there.  Anyway, I'll keep you posted.

[Update:  10/3/11 I got my medical records and that gave me a little more information.  Mostly it made me feel more confident that my case was in good hands.  I did call some other hospitals to look for a specialist, but hit some thick language barriers that I probably will not try to cross.]


This book also explained how to check for thyroid nodules. I already knew I had one, of course, but it was a little hard to locate and impossible to show anyone, but with a little tip of the head and a swallow, it pops right out.  I was in the middle of a swallow in this picture.  Can you see the nodule?   (It's on my right.)  When I'm not swallowing it doesn't stick out at all.

*A Simple Guide to Thyroid Disorders: From Diagnosis to Treatment by Paul Ruggieri, M.D. and Scott Isaacs, M.D., 2004.

Nicole has a Birthday!

Jacob broke the wick on the candle while we were decorating the cupcakes, so the wax overtook the flame pretty quick.  Double the wishes for getting it out in 0 breaths?

Banana cake cupcakes with homemade chocolate frosting. 

Ice cream, too.

Time to open the first present.  She doesn't get what's going on, but she's sure having fun!

Emily made her this placemat and I covered it with contact paper.

A doll from Grandma Finlayson.  

Pink PJs from Grandma Finlayson.  But what a cool doll!

Present from us.  I looked and looked for something worth giving her!  Nothing at our American store seemed worth buying, so I found something at Toys R Us Japan.

It's a big set of stacking cups with holes in each one for balls to drop though.  The purple thing is the base.

All the kids were very interested in this toy.

Nicole loves the balls.  Some of them rattle.

She mostly likes to knock it down

and manipulate the pieces.  You don't have to stack the whole set to use the balls with it, but she isn't interested in using it that way yet.

So cute in her new PJs.

The next morning I hid the new toy until all the kids were ready for school (knowing it would be a distraction).  They were ready for school a half an hour early--a record!  Nicole was still eating her breakfast.

Grandma Finlayson also sent these hats for the boys...

And these "squinkies" for Emily.

Here she is the next day, ready to take a nap with both of her babies.  She loves them both!
The other one was a baby shower gift from Paul's family.

It was a fun birthday with Nicole!  All day I reflected on the past year with her.  I am so happy to have her.  I think about that a lot.  We love her! 

My mom's package is still in the mail so there are more surprises to come!

Update:  here are pictures of her with the presents from my mom.  She understood the gift-getting thing and had a ball with it.

She kept standing up with the presents, like she wanted her picture taken standing up?

Standing up...

...and falling down.  (It didn't hurt.)

A cute shirt

A great bear

Man, she loves that bear.

My thyroid journey, thus far

Some of you know that I've got a malfunctioning thyroid gland.  This was discovered when I went to a family practitioner in May of this year complaining of excessive tiredness.  The doctor ordered some blood tests and, by nothing short of a miracle, eyed a slight bump on my neck when I was chatting with her at the end of the appointment.  She ordered an ultrasound of the lump, which confirmed that it was attached to my thyroid.  The blood tests showed low TSH, which indicates a hyperthyroid condition.  Follow-up blood tests showed that my thyroid hormones were within a normal range.  The doctor said I still have hyperthyroidism.  She referred me to the Internal Medicine Department.

In going to my appointment at Internal Medicine in June, I expected a quick fix:  some medication to correct my thyroid hormone levels, (which would perhaps shrink the nodule?), and I hoped to be feeling better before our summer trip to the states so I could fully enjoy myself.  But one of the first things the doctor told me is that it was going to take a while longer to figure out what the problem is.  My blood work had some difficult-to-diagnose results.  It showed a couple of antibodies which can indicate Grave's Disease, the most common form of hyperthyroidism, but more tests would be necessary to get a diagnosis.  He referred me to the Nuclear Medicine department for two tests--a radioactive iodine uptake and scan--which would require me to go on a low-iodine diet for 3 weeks, and, once I took the dose of radioactive iodine, I would not be able to breastfeed anymore.  The tests were postponed until after our summer vacation to the states, when a restricted diet would be more feasible, and when Nicole would be more ready to be weaned.

So, I went on our summer trip and struggled with more tiredness than usual, and opted out of some activities, but jumped in and participated in others, such as a quick side trip to Niagara Falls and Palmyra, New York.  I was glad I went and, as a whole, I enjoyed the summer.

Soon after we got back to Okinawa, I scheduled my radioactive iodine tests and began my diet.  They had emailed me a cookbook of low-iodine recipes, which was a huge help.  On this diet I had to avoid iodized salt (and thus, almost all packaged foods), tap water, most dairy products, soy products, and seafood.  I was allowed a cup of milk per day and occasionally an egg in a recipe.  I made my own bread and peanut butter and used fresh ingredients for most of what I ate.  The first six days were pretty hard because I had to make such a big change in my diet and didn't feel well.  But soon I felt better, and Paul helped a lot by preparing good food and selecting doable recipes.  He even made me some homemade ketchup, which was useful for a couple of the recipes, since we don't have unsalted ketchup at our grocery store on base.

I was concerned about weaning Nicole because she had thus far rejected bottles.  Actually, she was rejecting both formula and whole milk, not the bottle.  She's doing a little better now.  I mix chocolate syrup with her milk, and I'm slowly decreasing the amount of chocolate syrup I add.

I cried when I nursed Nicole for the last time before going in for my tests on Sept. 13.  I had never been forced to quit breastfeeding.  In fact, my other babies had always self-weaned by their first birthdays once my milk supply had diminished.  Nicole was two weeks shy of turning 1, but I was still sad to do it this way, especially since I couldn't yet enjoy snuggling with her with a bottle, because she always pushed it away.

I asked a lot of questions of the technician doing the tests.  Her name was HM1 Gibbs.  I don't know what that title means, but remember this is a military hospital.  I also had talked with her on the phone several times with questions about the diet, breastfeeding, etc.  She seemed very good at what she did, but she told me my questions had helped her learn more about her job rather than just going through the motions.   She even told me that because of my questions, she did some research and then convinced her superior to shorten the low-iodine diet to two weeks rather than three!  So I'm the last person that had to do the diet for three weeks!  But it's satisfying that I indirectly affected those who would have to do this diet at this hospital in the future.  That's 4-5 people per month, she said.  I wasn't too discouraged about having to do the test for an extra week since the last week wasn't too hard. 

HM1 Gibbs told me as much as she could about my results.  She told me that (1) the amount of the radioactive iodine my thyroid absorbed was way above the normal range (which, when I Googled that, I learned could confirm the diagnosis of Grave's Disease), and that (2) the nodule on my thyroid was cold; it did not absorb the radioactive iodine.  I think that means it doesn't produce extra thyroid hormones.

I was very curious about hot and cold nodules, so of course I Googled that, too.  I read that if it were hot, the next step would be either surgery (total or partial removal of the thyroid) or partial destruction of the thyroid using a much higher dose of radioactive iodine.  I wanted neither!  But for a cold nodule, the website indicated that the next step is fine needle aspiration of the nodule to check for cancer, and if it's benign--which is probably is--they can probably leave it there in my neck.  But anyway, I'm just guessing.  You never know about these websites.  Plus there may be more interpretation of my tests which will provide more information about my treatment.

It seems to me that there are two aspects to my treatment:  the hyperthyroidism and the thyroid nodule.  How will they treat the hyperthyroidism?  I'm having to be patient.  In any case, I have confidence that they can fix me.  I'm looking forward to feeling better, and to adding a couple more wakeful hours to my day.

I will meet with my internist on Sept. 29 to find out more.  I'm excited!  (Yes, that is the best word I can come up with.  I'm truly looking forward to finding out what's next.)

38 things I love about Paul

Today is Paul's birthday.  In his honor, I'm posting this list, most of which I wrote earlier this year:

1. He's an affectionate father.

2. He makes adorable cakes like this:

This was for our friend Adam Wickley (who is not a kid, but appreciated it nonetheless).  Paul asked what kind of cake he wanted for his birthday--perhaps a doggie or My Little Pony, and Adam, joking, made a detailed description of what he wanted--a surfer riding a big wave, a girl on the beach, etc.  And Paul did this!


3. He's silly.

4. He's frugal.

5. He cooks yummy stuff.

6. He willingly stays home with the kids when I want to go somewhere alone.

7. He gives good advice, very often inspired.

8. He enjoys experiencing new cultures and helps our family enjoy it, too.

9. He makes an effort to learn Japanese since we're living in Japan.

10. He runs until he's tired and keeps on running.

11. He likes to think.

12. He has good taste in music.

13. He plays great stuff on the piano.

14. He sings to the kids at bedtime (and quite well).

15. He's committed to read the scriptures and pray daily with me and by himself.

16. He likes to go on family outings.

17. He's appreciative that I cook dinner for the family.

18. He's an effective teacher who engages his students.  Sometimes I wish I could be in his classes.

19. He holds the priesthood and is worthy to bless and baptize our children, and give blessings to me as well.

20. He values temple attendance.

21. He has a strong testimony of the gospel.

22. He's a good public speaker (and doesn't even know it).  He's entertaining, clear, and effective in delivering his message.  I always enjoy listening to him speak.

23. He SCUBA dives.  I like this because it took bravery to learn, it lets him enjoy nature in a different way than he otherwise could, he strengthens friendships with the guys he goes with (probably), and it's good exercise.

24. He has a good last name.  I'm thankful I didn't marry a Smatty, Quackenbush, Buffenbarger, or even a J-surname. 

25. He likes oceans (actually water in general) and sunsets.  Sunsets over the ocean, especially.

26. He appreciates the arts--classic literature, art, music, and particularly musical theater.

27. He sometimes addresses me like a Russian:  "Ah, Jill!"

28. He loves his mother.

29. He tries to influence people for good--especially young people.  And he often succeeds at it!

30. He weeds the yard regularly.  That's just a nice thing.

31. He fulfills his Church assignments faithfully.

32. He keeps a journal weekly.  This helps him process things as he writes, and then he reviews what he wrote 6 months ago and learns from that as well.  It also will be a treasure for our posterity.

33. He enjoys talking to our babies, making them smile, watching them develop.

34. He speaks several languages.  That's not only handy, but it lends understanding about language in general, including his own.

35.  His cartoon drawings are delightful.  Seriously, they delight me.  If you ever get to see one of his "Joseph" stories he wrote for his French I kids, you'll get a good taste.  If he reads it aloud, the experience is even better. 

36. He understands some very useful ins and outs of computers.  Thank goodness for this.  He backs up our computer twice a year so we don't lose stuff, too. I'm grateful.

37.  He loves to read and influences our children in that area.  He also taught me how to read to children who are too young to understand the words of a book.

38. He's mine forever!

Happy Birthday, Paul!

Nicole Playing - 7 1/2 mos.

 

There is no sound to this video.

Okinawa World, Gyokusendo Cave, and a few random pictures

During Spring Break our family went to Okinawa World, a tourist attraction built above Gyokusendo Cave, the second longest cave in Japan.  Click on a picture to enlarge it.

Entrance to Okinawa World

They did a snake show.  This is the habu, very poisonous.

People could get their picture taken with the python.  No thanks.

I was really impressed with the cave.

Going down into the cave

All the kids loved it.

The humidity in the cave made our hair curly.  Nicole's little pony tail even curled down, which the kids got a kick out of.

The museum in Okinawa world showed Shisa of different ages and countries.

Here's a Japanese boy's outfit from 1945, and some toys from that time period.

Japanese kids' toys from 1955.

We had some packing paper around and Emily decided it would make good shoes.

Nicole's first time in the stroller outside of her car seat.  She loved it.  We love these walks to the neighborhood fruit and vegetable market with Nathan riding on his scooter.

Nathan concentrating hard as he plays octaves on the piano.  He doesn't like this picture, but I love it!

Nathan still loves his bear.  He named it Brandon.