Saturday, February 28, 2009

Slumber Party

What started out as inviting one friend over to help make ribbon boards for their church lifegroup on Saturday... then inviting two friends over to help... turned into inviting 3 friends over to spend the night Friday night and then make the ribbon boards the next morning. Jessica had had a pretty good week, so this was a good weekend for it. We had pizza and the chocolate fondue fountain Friday night. And the girls mainly just closed themselves up in her bedroom and talked, did girl stuff, and watched a movie. Saturday morning, Jessica actually woke up before the other girls, and helped me cook eggs and bacon for breakfast. Afterwards, it didn't take them long to make their three ribbon boards. Then they were back closed up in her bedroom talking, watching a movie or two, playing the game Catch Phrase, and giggling like a bunch of teenage girls. Jessica didn't have a birthday party for her 15th birthday, so this was a good substitute. It was 2 of the girls first sleepover, and I think it was a success! They all seemed to have a good time.

Jessica wanted to get out of the house with us later when we went to Wal-Mart. By the end of the shopping, she said she should've stayed home and was getting tired. But, I believe the sleepover party was well worth it!

Wednesday, February 25, 2009

Is Something Working?

Jessica and I were talking - about the fact that Mia has been doing better and seemed to be in better shape. Jessica said it was because she'd been riding her more lately. And, to that, I responded that was because her [Jessica's] B-12 shots were helping (so she's able to ride more). She said, "no - all my medicine is finally working." It would be nice if something really is working!

I've noticed that I haven't heard from Jessica in the middle of the night in quite a while. And, this morning, she woke up at 8:00a.m. wondering why she can't sleep in anymore. It's been that she couldn't be awakened before 9:30 or 10:00. There are some things to be thankful for!

Halfway There

We're halfway through the week, and it's been a decent week so far. Not a really good week, like a couple of weeks ago, but ok. Jessica's been just a little tired, but ok. She's made it to classes and kept up with her schoolwork. Most of her extra time at home is spent sitting on the couch watching tv. She did clean her room last night, as she's hoping to have friends over to spend the night this weekend. I really hope she's up to it.

This afternoon she wanted to go ride Mia since it's supposed to rain this weekend. So, we went for a short visit. She probably rode for 20 minutes. Mia did well. And Jessica was happy. On the way home, Jessica started getting one of those one-sided headaches, and it seems to be getting worse. I'm anxious to talk to the doctor next week and see what he says about these headaches.
For now, it's time for some rest.

Monday, February 23, 2009

Monday 2/23/09

Today's my birthday. We'd already had our celebrations; though tonight we had birthday cake and just hung out together - no tv, just us, which was nice. Both of the kids had homework that took a while.

I received several phone calls with birthday wishes today. Everyone always asks how Jessica is doing, and, in asking, I've been questioned how she's going to get all her school credits and finish high school on time. And in reading another blog that's trying to decide the school issues also (but probably doing a better job at it), it's got me thinking about it. I don't know if she will finish on time. Right now, we're having to take things one day at a time. At the end of this school year, she will be a half a year behind, and I don't know of any options to make up those credits. What do we do? And how do you do it? How do other children with CFS make it to school all day and manage a full load? I'm still hoping we'll get there.

We got caught up on shots today - Matthew's allergy shot, and Jessica's B-12 shot. And I think Jessica's finally accepted getting a shot and getting used to it. She actually wanted and asked to go in by herself to get her shot (instead of fighting it). She couldn't, of course, but it was nice that it was so much easier this time.

Jessica is a little tired tonight, but not too bad.

Sunday, February 22, 2009

The Rest of the Week

By Thursday, Jessica was still sore and achey, but made it back to class.

Friday was even better. I took her to see and ride Mia right after school. We were probably there an hour or an hour and a half, with half an hour of that riding and the rest either grooming or working with her on the ground or visiting with the other horse owners. Mia did well, and Jessica was pleased.

Saturday, Jessica and I went for manicures and pedicures - an early birthday present from my mom - and some much needed pampering! Jessica and Steve had to go shopping (shh - for my birthday present) while Matthew and I worked on homework. Then we went out to dinner with my parents to celebrate our three birthdays.

Sunday, the boys (Steve and Matthew) cooked me cinnamon rolls for breakfast, and then we went to the afternoon movie, Pink Panther. If you like Steve Martin, it was a funny movie worth the laughs! Jessica went to the evening youth service at church, and came home a little tired. But she's held up well throughout the weekend.

Wednesday, February 18, 2009

Wednesday 2/18/08

By late yesterday, Jessica was getting body aches. In the middle of the night, I got a text from her saying "my body aches all over." I couldn't even rub her back, because it hurt to the touch.

Jessica woke up saying - "still really tired, my body is hurting all over, and my throat hurts..." She would barely even talk to me this morning - That's how bad she felt. When I asked her if she was the same as yesterday, she said maybe worse because of her body aches. Her tiredness was better, but her achiness was worse. She was worn out, but couldn't sleep. She didn't get out of bed at all until 1:00. I gave her ibuprofen and she ate lunch, and then she seemed to perk up some. It was a beautiful day today - sunny and 70 degrees - so she managed to move to the backyard to soak up the sun. We sat on the trampoline and we worked together on the many history questions to prepare for tomorrow's test. After a few questions, Jessica laid on the trampoline and rested or napped for a while. Tonight, we've managed to finish the study questions and she's ready for the (open note) test.

She's still sore, but doing quite a bit better. It's good to see her smile again!

Tuesday, February 17, 2009

Constant Change

Not a good day. Jessica woke up saying "I dont feel real good - my fingers are swollen and hurt, my throat hurts, and I'm just tired..." She went back to sleep and slept the rest of the morning. I brought lunch to her in bed. Afterwards, she asked if I would stay and keep her company. She also started getting one of her one-sided headaches. I sat on her bed, and we visited for a couple of hours until she'd evidently decided it was time for another nap.

When she woke up, she "didn't want to move" but wanted me to bring her rabbit up to her. My husband and I might not like having to clean up after the rabbit, but we like the fact that he's therapuetic.

Of course, she missed both classes today. She's got quite a bit of homework and a History test coming up on Thursday. Her English teacher has been very understanding though. Her email to me today was "The assignment for today if she feels up to it is to read pages 139-167. I am also attaching the chapter questions in case she wants to do them." She's also told Jessica that she "used to have" CFS.

I was just bragging 2 posts ago that Jessica was doing good, had a good week, and seemed to have improved. The good days bring hope and excitement. And then she's knocked back down again. I was reminded of something I read in Sue's (Learning to Live With CFS) blog: "The only constant is constant change; as soon as you get used to being in a certain state, it shifts again."

Monday, February 16, 2009

Three Day Weekend

Steve was sick in bed all weekend with a flu-like virus. We stayed away - checking on him, washing hands often; I slept on the couch... And not very well, I might add. So we had a pretty quiet Valentine's Day / President's Day weekend.

Jessica did ok this weekend, and I didn't think she did too much, but I could also tell that she wasn't as perky as she was this past week during her good week.

Saturday, I took her to see Mia and she rode for a little while, but she was taking it easy, going slow and didn't do too much. I was actually thinking that it seemed like she was purposefully just sitting on Mia part of the time without much movement. In the afternoon, the kids had a birthday party to go to at the pizza/arcade/attraction place. Jessica hung out with a friend and played two games of lazer tag, but they hid out in the fort for most of those games. She still got first place in one!

Sunday, the kids did homework. And Jessica went to see a movie with a friend.

Monday, Jessica went with me for a quick trip to Wal-Mart and to take one of our dogs to the vet; and she & Matthew played outside with the dogs a little.

But, by the end of the evening, Jessica had her head in my lap, not feeling too well.

Friday, February 13, 2009

A Reason To Celebrate!

So far this semester, Jessica is holding up much better with her 2 afternoon classes. This is the exact point in the semester last semester (6 weeks into it) where she went to homebound. Last fall she'd missed 14 days to this point. This semester she's missed 8 days. (Some of those are partial.) And that's counting the fact that she had bronchitis for 4 of those days a couple of weeks ago. She's got A's in both of her classes. And this week's been a good week. She made it through her whole school week this week!

It really does a mom/parent good when her kids are happy and healthy! I can't help but share the good news!

Wednesday, February 11, 2009

Wednesday 2/11/09

Jessica's had a good week. She came home today in a good mood, and has felt good this week... until now. I can always hear it in her voice when she's getting tired, and she's there. She's tired. It'll be an early night. Not only because she's tired, but she has to get blood work done early in the morning. Well, early for her.

Tuesday, February 10, 2009

CFS / CFIDS Stories

When I took Matthew to our family doctor today (for bronchitis), the doctor told me of a 27 year old lady that he saw recently that now has Epstein-Barr Virus (EBV). He said she got married and contracted it from her new husband. (Is it contagious?) He said she used to work out and was a very strong girl, but when she came in, she was thin and he barely recognized her. Our doctor is a friend and I think he could see the panic on my face, so he commented that the lady is where Jessica was last year with it, and then he changed the subject. I'd like to hear some good positive stories...

At least we can be thankful that Jessica has improved quite a bit from last spring! And we have hope for continued improvement.

Sunday, February 8, 2009

The Weekend

All in all, it was a pretty good weekend.

Saturday - Jessica and Matthew helped me clean house for company on Sunday. Jessica didn't do anything too strenuous - I didn't let her vacuum. She cleaned up the rabbit's cage, wiped down the kitchen counters, and sat and folded clothes. By that time, she said she was "a little worn out." But not too much... She worked on homework, and then went to see and ride Mia. She and Steve were out at the stables for a few hours. She worked with Mia on the ground first, and then rode for about 30 minutes. Then, she said she and Mia just "hung out together" (while Steve was helping build fences). She seemed to be holding up ok, and came home happy that Mia did well. Though at bedtime, she got one of those all-of-a-sudden one-sided headaches. At least it didn't seem to last.

Sunday - Jessica worked on homework, and got her Gram to take her shopping for clothes. At 5'8", she's growing out of everything! They went to two stores, so hopefully didn't do too much. And then at 5:00, she announced that she wanted to go to church for the youth services. She made it through that just fine, and came home excited that she was sent home a decorating project (a ribbon board) to do for their new room.

Now, since Matthew's sick (with a sore throat, coughing, etc.) we're all piled in his room for a change watching Cartoon Network.

Friday, February 6, 2009

Friday 2/6/09

Jessica had a rough night last night. After going to bed with ibuprofen before 10:00, she woke us up at 11:30 saying her head was still "killing her!" I've emailed her doctor to check on these headaches, and should hear back from him next week.

But this morning Jessica woke up feeling better! She made it through both classes, and was able to do a little shopping afterwards. (Both of the kids are growing taller and growing out of their clothes!) It was a much better day!

Tonight she's been hanging out with Matthew, and watching Narnia - Prince Caspian.

But You Don't Look Sick

I just read a very interesting perspective on a chronic disability. The idea is called The Spoon Theory -

Those dealing with an invisible illness like CFS/CFIDS can relate to this story. And probably have gotten reactions like the title of the website - "But You Don't Look Sick."

Thursday, February 5, 2009

Thursday 2/5/09

Jessica made it through school today, but has a headache. She's sleeping on the couch now (5:30p.m.). She says it hurts just on the right side of her head. Why is that? Does that mean something? It seems that she's been having more headaches lately.

Wednesday, February 4, 2009

Wednesday 2/4/09

Just before school, Jessica had a headache, one that came on all of a sudden. She went on to school, but by the time the second class started, I got a text message saying she didn't feel good. So I picked her up early. She came home and slept.

She wasn't feeling good, but still had extensive vocabulary words for History and 2 chapters to read with study questions for English. So, I tried to help with History. She types her vocabulary words on the computer, since we've found that it was hard for her to sit with her feet dangling at a desk/table for a long period of time, and her fingers hurt and swell from too much writing. But somehow after typing all but 4 of them and saving as we went, we lost all the changes we'd made today! It was late, and time to go to bed, and start again tomorrow. At least she go her English homework finished.

Tuesday, February 3, 2009

Tuesday 2/3/09

This morning Jessica was not feeling good - tired and a sore throat - but pushed on to go to school. She wasn't sure if she'd make it through both classes, but did - made it through her History test and a couple of make-up quizzes. On our way home from school, we stopped by to get her B-12 shot (I think she's forgiven me for that now), that she doesn't think is helping.

Tonight we're been piled up on the couch, reading and watching tv, and she seems to be feeling better.

Monday, February 2, 2009

Monday 2/2/09

It was a pretty good day, for a Monday. Jessica went to both classes, studied for a test, and helped Matthew with a poster project (she's creative!). Jessica's held up pretty good today, except for a headache tonight (a one-sided headache).

Sunday, February 1, 2009

The Weekend

It was a decent weekend. We went to the horse show on Saturday, and sat watching the gracefulness of the Lippizzaner Stallions. And then went out to dinner. On Sunday, Jessica and Steve went to see Mia. It seems that the stable owner had just finished working with Mia, so Jessica could only ride her for a very short ride, which was probably a good thing in disguise.
Otherwise our weekend was quiet.

Jessica seemed to feel pretty good except for a headache.