Saturday, May 31, 2008

Saturday 5/31/08

Today was a pretty good day. We all went to see Mia this morning. Jessica didn't ride this time, but just played with her on the ground some, which means Jessica's basically in one spot while Mia does all the work and all the running.

Jessica has had plans of working at the stables this summer in exchange for riding lessons. The stable owner has come up with a list of things for Jessica to do. But, at this point, we don't know if she'll be able to, unless it's just the easy work, like painting posts - while she sits.

Jessica hung around the house this afternoon and worked on schoolwork some. Then we went out to dinner with my parents for our celebration dinner at a Japanese steakhouse. Jessica did pretty good today, but now has a sore throat and a little tired.

Friday, May 30, 2008

Friday 5/30/08

Today was a good day for the most part. Jessica stayed in and worked on homework this morning while Steve and I went to Matthew's elementary school graduation. My parents came over for a visit this afternoon, and my mom, Jessica and I went to Target to look at swimsuits. We waited on Steve to get home from work with the plan of all of us going out to eat dinner, but Jessica had a bad headache and ended up on the couch with a heating pad. Taco Bell take-out works too.

Thursday, May 29, 2008

Thursday 5/29/08

My parents came over today to be with Jessica while I was at work. She's really doing good today, but I know she likes the company. She worked on school work. We're down to the wire to get it all done. We may only get the homebound teacher one more day (2 hours), and we possibly have 3 more finals to do. It will be nice when school's out and summer's here!!

Jessica is having a good day today! She has been having more good days it seems. But we just had to break her heart and tell her that she couldn't go on the youth group trip to Florida in a week and a half, and then email the youth pastor to cancel her trip. She really wanted to go. She's been holding out hoping and thinking she'd be able to go. But it's a full schedule and so far away! I couldn't go get her or get there quickly to take care of her. And she's better if her activity is limited, and I know they'll stay busy with lots of activities, late nights and early morning praise and worship on the beach, etc. I hate that she'll miss it!...

Wednesday, May 28, 2008

Wednesday 5/28/08

Today was a pretty good day. Jessica woke me up over the intercom at 2:30a.m. this morning wanting an ibuprofen for her sore throat. But the day hasn't been bad. I've had trouble getting her to focus on studying for her tests/finals before the homebound teacher got here, but maybe the lack of focus is because she is tired.

Tuesday, May 27, 2008

Tuesday 5/27/08

Today wasn't a good day. Jessica didn't feel good today - tired, sore throat, head hurting a little, fingers hurting when she was trying to write her schoolwork, etc.

We didn't do any schoolwork over the holiday weekend, so I was trying to push through some of it today. My parents came over with us to help out. But Jessica had to lay down after a little while, and took about an hour and a half nap.

Her homebound teacher came at 4:00, but left earlier than her alotted 2 hours (only stayed an hour) because Jessica wasn't feeling well. We got a few things done and turned in today, but need to be prepared for the teacher to bring finals the next time she comes. School is out next Wednesday.

We probably did too much over the holiday weekend, or maybe the little bit that Jessica rode Mia yesterday was too much...

Monday, May 26, 2008

Monday 5/26/08

Today was a good day.

Jessica and Steve went to Tractor Supply for a few supplies needed for Mia. Then we all went out to see her. Jessica rode her, but just probably about six times walking or trotting around the paddock. So, not much. Then, while the guys took their fishing poles down to the pond (and, yes, they each caught a brem), Jessica and I gave Mia her first bath since we've had her. Or, a partial bath at least.

We came home, ate lunch, and went to look at a house (with land) that we've been thinking about. And then we went to the movies - Narnia, Prince Caspian. (It was good.)

Jessica was tired and said her throat hurt, but she held up pretty good.

Sunday, May 25, 2008

Sunday 5/25/08

Today was an ok day. Jessica slept in while we went to Sunday School at church. She was a little tired this afternoon but doing ok, and rested while watching tv. She just hung around the house until late afternoon. Then we all went to Lake Sylvia (we won't let Steve pick the lake next time!) for a cookout and fishing. By the time we got there, Jessica had a bad headache, so I roasted her hot dog for her. But she perked up and roasted her own marshmallow. And then went fishing, until we couldn't stand the gnats any more! Jessica again had a headache on the way home to the point that she thought she was going to get sick. She went to bed with the heating pad on her head.

Saturday, May 24, 2008

Saturday 5/24/08

Today's been a good day! Jessica has seemed normal today and more active.

She played Playstation with Matthew. She helped keep the dogs calm while Steve and Matthew were bathing them. And we all went out to dinner tonight with my parents and my brother's family. And then stopped by to see Mia just to groom her.

Jessica said she has been a little tired today, but from outward appearances she seems really good.

Friday, May 23, 2008

Friday 5/23/08

Jessica's had 2 good days in a row. Today both of the kids had an orthodontist appointment, and then my parents met us at U.S. Pizza for lunch. Then we decided to try taking Jessica shopping. (Jessica (and my mom) loves to shop and hasn't been able to.) My dad and Matthew went to Chuck E Cheese, and my mom and Jessica and I went to JCPenneys. We debated about getting a wheelchair to use, but she wouldn't use one where she might be seen. So we thought if we just went to one store where there wasn't much walking involved and didn't stay too long, maybe she'd be ok. I think the getting out and doing something she likes (along with getting some things she liked) does her good.

Thursday, May 22, 2008

Thursday 5/22/08

Today's been a pretty good day. Jessica has seemed to feel better today. She is livelier. We worked on school work for the most part today. The homebound teacher should be here soon.

I got an email today from Dr. A that we saw last week. Her husband is an Infectious Disease doctor and she has consulted him also, so it's like we got two for one! She gave some different options that we can try - I guess after the saliva test comes back. So, that is encouraging.

Wednesday, May 21, 2008

Wednesday 5/21/08

I went to work today for my one day this week. (I'm on leave of absence, but asked to come in one day a week for the important things, like getting bills paid and payroll done.)

Jessica was tired today, but better than yesterday. At about 9:45a.m., I got a text message from her saying "My throat hurts bad and im still a little tired. Im laying in bed reading." My parents came over to be with her and help out. My mom said she looked tired and that you could tell she felt worse than the weekend. She took a short nap this afternoon.

But she did work on her homework some, and she and my mom cut out a pattern for a new horse blanket for Mia. Steve would like for us to go see him play softball with his firm tonight, but Jessica's probably not quite up to it, so the kids and I will stay home.

Tuesday, May 20, 2008

Tuesday 5/20/08

Today was so-so. Jessica was able to do some homework today, and we took our lunch outside in the sunshine. While she was writing notes from her P.E. book, she complained of her fingers hurting. She has been tired, and has had a pretty bad headache. She was able to get in about an hour nap before her teacher got here.

Jessica's finally got her civics grade up - to a B - and that's still with missing 2 tests/quizzes and 3 homework worksheets.

Monday, May 19, 2008

Monday 5/19/08

Today wasn't that good of day. Jessica was dragging most of the day. I had trouble getting her to read her P.E. book. And then in the early afternoon, she said she felt awful, and that feeling lasted the rest of the day - really tired and head hurting bad. She took at least a 2 hour nap.

Activity level: 4/10 Feel-good-level: 5/10

Sunday, May 18, 2008

Sunday 5/18/08

Jessica said she didn't sleep well last night - between the noisy neighbors in the hotel, and her daddy snoring. But I also woke up once with Steve snoring on one side of me, and Jessica snoring in the bed next to me on the other side. Jessica and I slept in, while Steve and Matthew got up at 6:00a.m. and went fishing. Then we went to eat with my parents, and we all went fishing again. Jessica slept on the way home, and then we stopped by to see Mia. She even got on and rode for just a little bit. It was something she's been wanting to do, so it was one of those things that may be testing the limits, but was going to be done.

We got home at 6:00p.m., and Jessica got on her jammies and has been resting since.

The lake was up 25 feet above flood level with trees, lightposts, etc. mostly under water that shouldn't have been. A sign at a boat ramp that said 300 feet to the water was at the water. This weekend was a fun get-away. We always enjoy the water! While Jessica and I are relaxing and glad to be home, the boys have gone back out to a friend's pond to fish again and see if they can catch something this time.

Jessica's throat is starting to hurt...

Saturday 5/17/08

Earlier in the week we'd been asked to join my parents this weekend at Greers Ferry Lake. After much debate, we decided to go! Thought it would be a good (and needed) outing for Jessica - so she could see something other than our house, the backyard, and the doctors' offices. We went just to hang out at the lake and do a little fishing.

She did pretty good. On our short walk to the edge of the lake, she handed me her fishing pole to carry for her, and I noticed that she was breathing heavy. And after standing for a little while, she was looking for a spot to sit because her legs were tired. But for the most part, she held up pretty well.

Friday, May 16, 2008

Friday 5/16/08

I went to a Reading Carnival this morning at Matthew's school, and again this afternoon for a little bit. When I got back home this morning, at 10:15, Jessica was in bed. Today wasn't as good of day. She was really tired. But then I made our lunch, and she was wanting to get out, so we took our lunch out in the backyard in the sunshine. And had the dogs to visit with. It was a beautiful day. Time & Temperature said it was 65, but in the sunshine it felt a lot hotter! I think the sunshine did her good!

When I was at school today, I saw one of Jessica's friends who asked me: How is Jessica? What does she have? How bad is it?... I'm not sure what the best answer is for those questions.

Jessica wants and needs to get out. But when I asked her where she would want to go, she just chose to go see Mia. So, tomorrow...

Thursday, May 15, 2008

Thursday 5/15/08

Dr. A, the doctor we saw yesterday, called me this morning. She had obviously looked through Jessica's records and she said she'd done some research, and she believes Jessica has Chronic Fatigue Syndrome (CFS). Most of the criteria for CFS says fatigue for 6 months, and we're in our 5th month, so the doctor said let's wait another month to be sure, and maybe she'll get better within that next month.

The primary symptoms for CFS as reported from the Center for Disease Control are:

  • difficulties with memory and concentration
  • problems with sleep
  • persistent muscle pain
  • joint pain (without redness or swelling)
  • headaches
  • tender lymph nodes
  • increased malaise (fatigue and sickness) following exertion
  • sore throat

Dr. A wants us to do the saliva test to check her adrenal functions, saying this was still a symptom in CFS. She would then give her a low dose of hydrocortisone to boost her adrenals to produce their own steroids as they're supposed to.

She still wants to do the allergy testing, saying that allergy symptoms overlap. But we're not wanting to do that. (See yesterday.)

She said herbs can be given to improve the immune system. But she would only give one thing at a time so we'd know what was working, and wants to start with the hydrocortisone.

Dr. A did suggest that Jessica try to do a little exercise each day to prevent atrophy or the loss of muscle. We have cut back on Jessica doing much of anything because it seemed if she did much of anything, she'd be down the next day.

She also said that anti-depressants are used to treat CFS. Not for depression but for the illness. As Dr. A said (and it's nice to hear someone notice this), Jessica is not depressed. Jessica is bright and has hope!

In fact, at church last night, Matthew was given a new Bible, and Jessica started flipping through randomly looking for hopeful messages. She then looked up heal and healed in the index, and ended up with this: "Jesus turned and saw her. "Take heart, daughter," he said, "your faith has healed you." And the woman was healed from that moment." (Matthew 9:22)

Added at 5:00p.m.: Jessica's had a pretty good day! I asked her if she felt normal today, and she said she didn't know. I think she's forgotten what normal is. She's seemed almost normal today to me. Though she did say late this afternoon that she's tired, her head hurts and her throat hurts.

The homebound teacher is here now, and she's doing wonders to get her caught up!

Good news - The dance team teacher has agreed to let Jessica do book work for the rest of her P.E. credit for the year, so she won't have to make it up. She sent home a physical education book (from 1953!) without questions, and Jessica is to outline 5 chapters.

Wednesday, May 14, 2008

Wednesday 5/14/08

We went to the doctor today that supposedly deals with fatigue and was referred to us by a friend. The doctor was nice, took time with us, and listened and had an open mind, unlike the other doctors. She said doctors (including herself evidently) don't like to diagnose Chronic Fatigue Syndrome (CFS) because there aren't any treatment options for it. I told her about the anti-viral and the Florinef that is supposed to treat CFS. She (as others) asked why an anti-viral when the virus is gone now? (I'm not sure I know that answer.) And she said the Florinef is a steroid (I don't know that I knew that) and she didn't like giving children steroids or anyone for a long period of time because of the side effects. She did say that she would research it though. She wondered if there were any clinical studies done on it.

But first she wanted to do allergy testing on Jessica saying that there are allergies that just cause fatigue. I haven't agreed to this. Jessica's never had allergies. (Matthew, my son, does, but not Jessica.) And why would it be allergies if it started from mono?

And the other thing she wants to do before diagnosing is the saliva test. The nurse said it doesn't test for thyroid anymore, but it tests for andrenal, hormones, and also allergies to things like milk, gluten, and wheat. But she really wants to do this test to test for Adrenal Fatigue. She said your adrenal glands can get stressed, and could get stressed from an illness like mono. We will do the saliva test, but were told not to start that until Sunday, so it doesn't sit in someone's warehouse over the weekend and mess up the test results. But the results may not get back to the doctor for 2-4 weeks.

She also mentioned that even though the EBV test is negative, the symptoms from it can last for months. And said her daughter had mono for a year! And so she said an option is to wait.... longer.

I think Jessica is ready to head to Texas to see that doctor at the Fatigue Center!

Jessica has been better the last few days. She was better during spring break in March too though.

I emailed the school counselor and Jessica's dance team (p.e. credit) teacher and asked what we're to do about that class since there's no "homework" and would she get credit? The counselor had suggested to the teacher that she come up with some book work to get credit, and the teacher has suggested that Jessica could just take 9 weeks of PE next year to make it up. Not the answer we wanted to hear!

Added at 10:00p.m.: Today was a pretty good day. Jessica went to the doctor, went out to lunch, went to Matthew's graduation at church, and we stopped by Mia's to pick up her saddle blanket. And Jessica held up pretty well.

Tuesday, May 13, 2008

Tuesday 5/13/08

Today's been a pretty good day. Jessica woke up early (8:00a.m.) because of the thunder. She was tired and laid down to take a nap, but didn't sleep long. We've worked on homework today, and the homebound teacher is here now.

Monday, May 12, 2008

Monday 5/12/08

Today wasn't that good of a day. Jessica woke up really tired and her throat hurt. It seems she probably did too much this weekend. My parents came over. My mom said Jessica came down for lunch and was holding her head up, and looked washed out. But she also said she wasn't as bad as she has seen her. Jessica got better as the day went on, and she worked on homework. And finished her last sewing project!

She's tired and has a headache, but watching tv.

Tomorrow starts my leave of absence at work...

Sunday, May 11, 2008

Sunday 5/11/08

Another good day. Jessica woke up slow, and started out slow. We didn't know if we were going to be able to go out to lunch or not with my mom for Mother's Day. Jessica was still in bed when we got home from church. She debated about going out, but she wanted us to go. When we got back from lunch, I asked her if she wanted to take a nap, and she said no, she wanted to be able to sleep tonight. But I took a nap! And when I woke up, the kids had made me cupcakes for Mother's Day! They also washed my car. Matthew did the washing and scrubbing, and Jessica held the hose and sprayed and rinsed it, so she didn't have to do much.

It's been a good Mother's Day!

Jessica did a few things today, but seemed to hold up pretty well. She did want to make sure we watched our movie early tonight so that she could get to bed earlier. She's there now...

Saturday, May 10, 2008

Saturday 5/10/08

Jessica did well today. We had to wake her up early for Mother's Day breakfast with her grandma. We went to Cracker Barrel. And then we stopped by to see Mia. No riding, just a visit. We let her loose in the paddock, and watched her show off running.

And then Jessica had a friend over for dinner and to watch a movie with us - a horse movie - This friend has a horse too. This is the first time she's spent time with any friends in quite a while! So this was nice. I kind of suggested it for that fact, and since she was having a good day. (I just hope Jessica hasn't overdone it today.) She is tired...

Friday, May 9, 2008

Friday 5/9/08

Today wasn't a bad day. Jessica said she was so-so, not as good as yesterday, tired, and didn't feel that well earlier in the day. My parents came over (routine as usual) and stayed with her, and she worked on homework. Jessica and my mom got her sewing project #2 done and turned in! 2 out of 3 done. This one is a pet bed for Pumpkin, our bunny rabbit. The first was a guitar pillow for Matthew. The 3rd one will be a tote bag for Jessica.

Jessica stayed up a little longer than she should have, but then took around an hour nap this afternoon. After her nap and this evening she's seemed to be feeling pretty good. She and Steve have gone to see Mia. (Not ride, just visit.) After a long day at work today, I would rather go see her tomorrow, but Jessica said she feels good now and doesn't know how she'll feel tomorrow. That does make sense...

Thursday, May 8, 2008

Thursday 5/8/08

Jessica was tired but better today. My parents came over, and my mom said it was like daylight and dark - so much better - almost normal. I believe she worked on homework all day.

The homebound teacher is here, and she's trying to get a few things caught up, but it's going to take a while.

Activity level: 4 Feel-good-level: 7

Wednesday, May 7, 2008

Wednesday 5/7/08

Jessica texted me at 9:30a.m. this morning. She had just woke up. She said "I'm tired and my throat hurts bad. I'm pretty tired. I was out of it last night!"

My parents brought her breakfast and stayed with her the rest of the day. My mom said she was more tired - a lot worse than yesterday. She ate her breakfast and went back to bed. She slept at least 2 hours. My mom said she looked like a zombie.

I had to tell the homebound teacher that she couldn't come today because Jessica couldn't have functioned, especially well enough for a test.

She's up now - watching tv and reading her Horse magazine - but she's really tired.

Activity level: 2 Feel-good-level: 4-1/2

Tuesday, May 6, 2008

Tuesday 5/6/08

Jessica says she was so-so today. She was really tired and her throat hurt. She stayed at home, worked on homework, and took a 2 hour nap.

The homebound teacher came today for the first time. She just stayed for an hour, and will be back on Thursday for a couple of hours. They worked on Science today - actually a test that her Science teacher let us take home. Jessica liked the homebound teacher - she was nice. Hopefully Thursday she'll bring tests to make-up.

I think we might have found a fatigue doctor here finally! We've got an appointment next Wednesday 5/14. I'm excited! So is Jessica! I hope she (lady doctor) can tell us something.

Activity level: 4 Feel-good-level: 6

Monday, May 5, 2008

Monday 5/5/08

The rheumatologist doctor today asked a lot of questions, and looked at all of Jessica's joints, etc. And said there wasn't anything that she saw from physical examination within her field of study that she saw wrong. She said that Jessica will probably get better in a couple of months, and sometimes we [the doctors] just don't know what it is. I want to know what it is. We were told the first of March that she would be getting better within approximatetly a month from then.

Jessica has done ok today, but has been tired. She took an hour and 45 minute nap this afternoon. Besides the doctor visit and getting lunch out, she's been home and worked on homework (sewing) some.

Activity level: 5 Feel-good-level: 6

Sunday, May 4, 2008

Sunday 5/4/08

Today was an ok day. Probably not quite as good as yesterday. Though she didn't take a nap. Jessica just stayed around the house today. Sewed some on her Home Ec sewing project and went outside with the dogs some. Sore throat, head ache, hands hurt, and tired.

Activity level: 4 Feel-good-level: 6

Saturday, May 3, 2008

Saturday 5/30/08

Jessica said she was tired today, but from outward appearances she seemed better today. Today was probably the best day of this week. She did take an hour nap this afternoon, and her throat and head hurt some.

We went out to eat, and then to visit Mia. No riding; we just spent a little bit of time there with her.

Activity level: 6/10 Feel-good-level: 7/10

Friday, May 2, 2008

Friday 5/2/08

Today's been an ok day. Jessica seemed to feel better today, but just stayed around the house. She had a little bit of a headache, and rested but I don't believe she napped. She sat around and worked on one of her Home Ec sewing projects, while I helped cut out the patterns.

I got the process started for a homebound teacher, so we should hear from the teacher next week.

Activity level: 4/10 Feel-good-level: 6/10

Thursday, May 1, 2008

Thursday 5/1/08

At 3a.m. Jessica came over the intercom saying her throat was hurting and she couldn't sleep.

After a while this morning, she got up, took a shower and tried to get ready, but ended up in tears and back in bed. My parents came over to stay with her, and said she looked really tired. She's tired, her throat hurts, and her head hurts. She stayed home all day.