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1999
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Julia's
J D M S
Diary
 
 

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Sunday August 1

Today, our whole family is embarking on a journey of healthier eating. We've all been putting on weight lately. It's unsightly, inconvenient, uncomfortable, and most importantly, unhealthy. In recent months, we've been eating out a lot and not really paying attention to nutrition.

There is no organized "diet" going on here. We're just going to encourage each other to eat more sensibly. We're going to concentrate on eating more fruits and vegetables, more fiber, less fat. Personally, my problems are portions and snacking. I'm going to try to reduce both.

Thursday August 5

Julia had another outpatient Solu-Medrol infusion today; we're now doing them every other week instead of weekly. This week's treatment (attended by her mom) went extremely well, no problems or hassles at all. Her vitals were all normal, and she didn't gain any weight, which is amazing considering how recklessly we ate last week while on vacation.

Dr. A.W. came and checked Julia out; the usual questions and a brief clinical exam, which is next to impossible to do while Julia is hooked up to the infuser. She, along with the CAT/CR nurses, all commented on how much better Julia's rash looked compared to two weeks ago. It's true, I looked at her tonight. Her rash is suddenly and dramatically improved, over even just a couple of days ago. Her face looks all but completety normal; just her eyelids, when she closes her eyes, look a little pinkish now. I feel certain that if it looked like this last week, we wouldn't have to had endured all those comments from the rude, ignorant and insensitive (but probably well meaning) people. I don't know how to explain this - sure, MTX is supposed to be kicking in, but Dr. S. has always said that it wouldn't help her rash. We'll take it!

Finally, Julia had rubber stamped and decorated a card for Dr. A.W., and gave it to her today. She loved it! Julia also made one for Dr.S., but he was in clinic today and didn't get to see Julia, so it'll have to wait until next time.

Aldolase CK LDH AST ALT
3/30/99 Test: 10.2 293 290 47 36
4/27/99 Test: 11.4 413 348 68 69
5/25/99 Test: 12.4 544 347 59 42
6/22/99 Test: 15.7 943 393 82 59
6/24/99 Test: 8.6 285 318 45 46
7/1/99 Test: 10.6 432 303 49 42
7/8/99 Test: 8.5 284 265 37 23
7/15/99 Test: Not Done 330 290 42 23
7/22/99 Test: 3.0 292 392 53 30
8/5/99 Test: 7.3 161 283 30 25
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-59

Friday August 6

Dr. A.W. emailed us Julia's numbers from yesterdays lab tests. Wow!! They are spectacularly good - such that all her numbers are now in the normal range (except CK, which is just slightly above normal). This is very uplifting news for us. It looks like the MTX is really starting to work well. We will be staying on the every other week infusion schedule for the time being.

The rest of Julia's numbers (all also normal!) are: white blood count: 7.93; hematocrit 38.3, platelets 381, and sed rate 10. Julia's rash continues to look fantastic today. I don't think her face has looked this good literally since the rash first appeared over 18 months ago (has it really been that long??)

Monday August 9

Julia's rash continues to look good, but not as good as late last week. We need to keep an eye on it.

Thursday August 12

Julia got her Methotrexate injection tonight; much like last time, she complained about a bit of pain while the actual injection was being given, but after that she was fine. We gave it to her right before bedtime, which is the worst time of day as far as her pain sensitivity goes. She complains about everything at the end of the day (maybe a Prednisone side effect - it's easy to forget she's still taking 20mg/day of that stuff), but sometimes that's the only time we can get it into her.

Friday August 13

It was a moderately warm day here in New England. Julia went swimming today, and even though the got a fresh later of sunscreen right before she went out, she somehow managed to get a sunburn. It's on her shoulders - you can see very clearly where her bathing suit straps were. It doesn't look too bad, just a pink area on the tops of her shoulders, but it's clearly a burn. Julia was just bawling about it. We put some aloe gel on it and hope for the best.

Saturday August 14

Okay, the sunburn looks noticibly worse today. Very much an angry red color. It's warm to the touch, and Julia was complaining about it this morning.

Not complaining too much, however - she's hosting a Summer Fun party today! She had to miss a birthday party last spring she really wanted to go to, so we told her she could have a party instead. She invited 10 of her closest friends, but only 5 came. Summer is a tough time, what with so many people being on vacation. It was an overcast, but warm and muggy day, perfect for water games.

We filled dozens of water balloons, got them set up with burgers and dogs, and the kids had a blast! Prizes were awarded to game winners, there was a "guess how many" game, and other activities. Julia has been looking forward to this for a long time.

Monday August 16

Julia's sunburn doesn't look too bad today, much moderated from Saturday. Hopefully, it'll turn out to be nothing.

I was contacted today by someone from the Myositis Association of America. They wanted to do an article on this Diary in next month's JM Newsletter. Very cool. We basically did an interview via email - she asked a bunch of questions, and I answered them. She was going to grab an image of Julia from her web page to use with the article. If she isn't already, I'd venture to guess that after this article publishes, that Julia will be the world's most famous JDMS patient.

Thursday August 19

Went in to Children's Hospital for another infusion. All her vitals were normal, and she has actually lost half a pound since 2 weeks ago - maybe being more careful with our diet is paying off. Todays infusion was utterly without incident, which is just the way we like it.

We had a nice conversation with a lady before our infusion started. She works at the hospital, and her job is basically to talk to the patients and their family. We chatted about Julia, and the Diary, and she let on that she, too, has an auto-immune disease. She mentioned the name, but I forgot what it's called. We talked about the large number of JDMS patients that have been in the hospital in the past 18 months - apparently, there were 2 at the end of last year and three more this past spring and early summer. Kind of bumps that "1-2 a year in Massachusetts" statistic up a bit. It was a very nice talk - I felt like she could relate to us and that she really cared.

Dr. S. came by about halfway throught the infusion, administered her Methotrexate, and gave her a quick clinical exam. She really does seem stronger today; she got up off the floor from a sitting position with very little trouble at all. He also had a look at the sunburn, but didn't seem concerned about it at all. He also said that if today's numbers look good, we can start tapering the oral Prednisone. Julia was thrilled to hear that.

Aldolase CK LDH AST ALT
3/30/99 Test: 10.2 293 290 47 36
4/27/99 Test: 11.4 413 348 68 69
5/25/99 Test: 12.4 544 347 59 42
6/22/99 Test: 15.7 943 393 82 59
6/24/99 Test: 8.6 285 318 45 46
7/1/99 Test: 10.6 432 303 49 42
7/8/99 Test: 8.5 284 265 37 23
7/15/99 Test: Not Done 330 290 42 23
7/22/99 Test: 3.0 292 392 53 30
8/5/99 Test: 7.3 161 283 30 25
8/19/99 Test: 7.8 167 291 30 19
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-59

Friday August 20

Julia had a very cranky, tired day today. Sometimes it's like this after a Methotrexate dose, and today was particularly difficult. Julia had planned to do a sleepover at a friend's house tonight. She got there late in the afternoon, and a couple of times during the course of the evening was not feeling very good about staying there. At the last minute, she decided she wanted to come home. We were disappointed that she didn't want to stay, she probably would have had a great time.

We got Julia's lab results from Dr. A.W. via email today. The numbers are virtually unchanged from 2 weeks ago, which is essentially a good thing. Her other results are White Blood Cell count 5.17, Hematocrit 37.5, Platelets 367, and Sed Rate 8. LDH and CK are both up slightly. We will keep a close eye on this, and if this becomes a trend, we will compensate, probably by increasing Methotrexate.

This means we will begin a slow taper of the oral Prednisone. Starting tomorrow, Julia's dose drops from 20mg/day to 17.5mg/day until further notice. We will check her numbers in 2 weeks and make corrections as necessary. Dr. A.W. also said that next time will will also look at other factors, like Factor Eight related antigen (vonWillibrand's factor), to compare to old values.

Saturday August 21

Current Drug Dose: Prednisone: 17.5mg/day Plaquenil: 200mg/day Folic Acid: 1mg/day Methotrexate: 30mg/week

Monday August 23

Last week, I ordered a new cookbook to help us with our eating regimen. I got it today. We've been doing much better this month, not what I'd call an ideal diet, but definitely an improvement. We need some help with meal planning and such, and I think this book will help.

It's called Power Nutrition for Your Chronic Illness. Julia's mom say a blurb for it in a magazine. It's great! It has a lot of specific information we can use. It has a whole chapter on cooking for people on Prednisone, and a section on Methotrexate. Have to give the recipes a try.

Power Nutrition for Your Chronic Illness
Power Nutrition for Your Chronic Illness:
A Guide to Shopping, Cooking and Eating to Get the Nutrition Edge

by Kristine M. Napier

Wednesday August 25

We decided to give Julia her Methotrexate dose for this week today instead of tomorrow. This is justified because Julia will be getting her dose next week on Wednesday also, because school starts on Thursday. The real reason, though, is that Julia is planning to have a friend over for a sleepover on Friday, and she doesn't want to be cranky for that.

The injection itself went well (my turn this time), but Julia said the injection site was quite sore for a few minutes afterwards; I gave her a cold pack to hold on it, and that relieved the pain. I am always amazed by the size of the pile of trash that accumulates from an injection. The syringe and needle itself go directly into the sharps disposal container. Then there's alcohol pads, sterile gauze pads, and their wrappers, and the needle and it's wrapper, the syringe cap, latex gloves, plastic bags, the EMLA tube and tegaderm bandage, and the spot adhesive bandage. Of course, it's even more stuff when she has have an infusion, but you don't really notice it when someone else (the nurse) cleans it up.

Thursday August 26

Oh my, this is Julia at her absolute worst. She is crabbing about *everything* this morning. Her attitude it remarkably bad, even compensating for Methotrexate. She even got to bed on time last night. I think that tomorrow, we're going to be very happy she got MTX a day early. In fact, I'm glad already.

Her rash doesn't look good today. She's developing a discoloration on the backs of both hands. It looks lighter than the rest of her skin with some small brown spots.

Friday August 27

What a difference a day can make! Julia was great today. Of course, having one of her best friends coming over to our house for a sleepover can't hurt. She actually lamented that she couldn't have her MTX shot today. We took the girls out to dinner, then they stayed up late watching videos.

I also received my confirmation papers and travel documents to attend the Myositis Association of America annual conference. We couldn't go last year, and I heard so much good stuff about it, that I really wanted to go this year. They have a whole series of seminars on JDMS. I'm really looking forward to going. Unfortunately, Julia's mom didn't feel entirely comfortable with the idea, and Julia would have to miss a day of school, so I'm going to go alone.

Saturday August 28

The girls work up early - too early to after having been up so late. I fed them chocolate chip pancakes, and Julia made quite a production of taking her medicine today. She seems to love an audience. Anyway, the lack of sleep really caught up with her later in the day. She turned grouchy and crabby again, and had to take a nap.

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Updated August 30, 1999
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