Friday 8/29/08

Jessica didn't sleep well at all last night. I got a text from her at 10:30 saying she couldn't sleep. I also checked on her at 4:00a.m. She was awake, and her throat hurting. She didn't feel well today. She rested this morning, slept this afternoon. Her head's been hurting for two days. My parents came over, and said she looked like she did last spring when she wasn't doing well at all. My mom told her to go brush her teeth to get ready for class and talk to God and see what she felt like doing. Jessica came halfway back downstairs, sat on the stairs frustrated, and said "I don't know what to do." She didn't feel good, but doesn't want to miss school. She tried. My parents sent her back to bed. When it was time for her second class, my mom tried to wake her to see if she could make it for that one, but Jessica was unresponsive. My mom had to get her ear close to hear her one word answer. We may have to do something else about school. Use the homebound teacher (for both or one class)? Or homeschool? She missed a History quiz today. She's missed 3-1/2 days in the first 2 weeks of school.

This is the start of Labor Day Weekend. Matthew got up this morning asking about going camping or going somewhere. When we told him that Jessica probably wasn't up to it, he was sad. Though he loves her and has been so helpful and understanding for the past eight months, he wants to do something. He wants to go somewhere. And he should. (He's 11.) It's understandable. How do we make sure we're keeping a good balance?

Thursday 8/28/08

Jessica woke up with a bad headache and was tired. She couldn't make it to her first class, and missed an Algebra test. She slept this morning, slept this afternoon. She's been dragging tonight and said her head still hurts.

I got a devotional in my email today that was on Philippians 4:11-13 - "I have learned in whatever state I am, to be content... I can do all things through Christ who strengthens me." Being content no matter what state we're in can be hard to do. Something to work on! The message was so very timely! Here it is for anyone that wants to watch it:


Plunge (Dive 1) from Jason Curry on Vimeo.

Wednesday 8/27/08 - 504 Plan

Steve & I had a meeting today with the school administrators to discuss a 504 Plan (an accommodation plan backed by federal law) for Jessica. And it went well! They were so nice! They basically said, without hesitation, that she was eligible for the 504 Plan. It's a legal document and the teachers get a copy, so that should help us. We got included: extra parent-excused absences (15 instead of 4), that absences won't count against her grade (because the Algebra teacher had in her rules that 5% of the grade was based on attendance and participation), extra time for work, and that she can dictate her homework to me to type if needed (because of the trouble with the History homework last week). We can meet again anytime and change it. They were flexible and so understanding. I'm so relieved!

Jessica's tired tonight, but made it through both classes for 3 days this week!

Saturday 8/23/08

We had new neighbors move in 2 doors down a year and a half ago, and, besides the initial welcome, we've hardly seen or talked to them - until today. They were having a garage sale, and I got Steve out of bed at 7:00a.m. to go with me. It was mostly baby stuff, so nothing we needed, but the conversation was. (I don't know that this was just a coincidence meeting today.) They're moving out of state next weekend. We found out that the lady (31 years old) has CFS, which started with mono when she was 16. We talked for an hour. Also, she works from home and gave me some information on that, as that's something that I've considered that I may need to start doing.

Jessica's been tired today, and had a headache for part of the day. She took an hour and a half nap this afternoon. Tonight she's dragging.

Friday 8/22/08

Another rough day; another missed school day. Jessica didn't feel good again today. Her legs seem to be better, but she's exhausted. She's taken a couple of naps at least. Actually she was in bed or laying down most of the day. So, she didn't make it to school again today. I called the Special Education coordinator today to let her know it wasn't going well so far. I did email the teachers today for make-up work, and they didn't respond.

It's been a rough week, but we'll keep on keeping on.

Thursday 8/21/08

This morning Jessica texted me "Im tired .... And my fingers are really swollen this morning." She evidently didn't sleep well last night. She wanted to try to go to school, but at the last minute decided that she couldn't make it. She didn't look good. She really didn't feel well, and went back to bed and slept for 3 hours. So, she's missed her first day, only on our 4th day into the school year.

We had a scare tonight. Jessica wakes up frequently with her fingers swollen and hurting, but tonight her feet and ankles were swollen and her calf muscles were tight and hurting. It was to the point that she had trouble walking from the kitchen table to the couch. After propping her feet up for a while, the swelling and tightness has lessened. I'm considering sitting up to watch her sleep tonight.

Wednesday 8/20/08

Today Jessica felt better during the day.

But tonight she was working on her history homework, and starting to get stressed, almost in tears. And, she doesn't need to stress! The teacher gave them (today) 54 vocabulary words to write out with their definitions and a detailed explanation about it. He gave an example and it wasn't a brief example! So, at number 22, she was almost through with her 3rd handwritten page. She was worried about getting it done. It's due Friday. We'll take this one day at a time...

Tuesday 8/19/08

I was at work this morning and got a text from Jessica saying, "I dont feel real good this morning. I didnt sleep good last night b/c everyway i turned, my body ached and my throat hurts hurts pretty bad :( "

She managed to fix herself some breakfast by pulling the bar stool up to the counter to sit while making it. She asked if my parents could come over to be with her, and they did. When I asked her if she thought she could make it through both of her classes or if she wanted to do her second one homebound, she said she feels like she's missing a lot if she does homebound. She made it through the day, but tired and achey. It wasn't a very good day. She's going to try a couple more days of school like this.

Monday 8/18/08 - First Day of School

Matthew had a hard time going to school, but afterwards said he had a good day!

Jessica went to her first class at 12:07p.m. and made it through both (2 1-1/2 hour classes) today. She had Algebra homework too that's taken her a little while to get through. High school gets their school supply list on the first day of class, so she came home with things we needed to go buy. She said she didn't feel up to going with me to Wal-Mart, so I went by myself. When I asked her if she thought she was going to be able to handle both classes at school, she said she didn't know because she's pretty tired tonight.

Her History teacher said if anyone sleeps in class they'll have to stand at the back of the room. Jessica actually fell asleep last semester in science because of her CFS. Her Algebra teacher said that attendance and participation are 6% of their grades. I hope this doesn't pose a problem. We still have to have our 504 Plan meeting so these things may be something to bring up there.

When I put her to bed, she said her whole body ached - her legs, her neck, her arms, her whole body. We haven't had this. Maybe it's from carrying her books to school, and she's not used to carrying anything at all lately?

The Misunderstood Illness

Someone actually wrote asong about CFS. At http://www.rescindinc.org/everybody.htm if you scroll down and right-click the hyperlink, you can download the MP3 file of a beautiful song written by an M.E./C.F.S. sufferer for the R.E.S.C.I.N.D. charity. The idea is that if you like it, you can make a donation to the charity.

Here are the lyrics, for if you want to sing along:

Everybody Knows About Me
By Susan Wenger of the indie/pop group Cinder Bridge

Here I am again, sitting by the window
In my small apartment on the 7th floor.
Keep myself occupied, by looking at the traffic
As if I lost the right to ask for more.

My body feels like it’s moving under water
As I lift a cup of coffee to my face.
I think about the things I’d like to try and do today
But somewhere in the middle lose my place.

Thick fog, hazy brown, the two-ton weights that pull me down
They don’t insist if no-one else could see.
Everybody knows about the failings of the down and out
And everybody knows about me.

I had a good job, had some good friends,
Had a life I could look forward to when I woke up each day
And then the fog rolled in, consumed them one by one
’til there was nothing left for it to take away

Sometimes I count it as a victory when I manage
Just to drag my aching body out of bed
The doctor’s mystified, could not produce an answer,
So they told me it was all in my head.

’cause if I wanted to I could shake this yuppie flu
Straighten out and set myself free.
Anyone could clearly see, we all choose our own destiny
And everybody knows about me.

Does it make it easier for you
To think there must be something I could do?
Rise like a phoenix from the ashes of this solitary world.

So I remain here, sitting by the window,
Watching all the people with their lives to live.
I would give anything to go outside and join them
But today I don’t have anything to give.

And still they have no doubt,
I’m looking for an easy out
And this is what I wanted secretly.
Everyone will have their say,
They shake their heads, they walk away
And everybody knows about me.
Everybody knows about me.
Everybody knows about me.

Thoughts

This (CFS) can be sad or scary, or just a little overwhelming when trying to figure out how to handle things like school, work, etc. And it can be a lonely place, especially when there aren't many that understand this illness. But Jessica is so positive and that helps us all. This week school starts, so it will be a testing time for Jessica to see how much she can handle. And Matthew starts middle school and is nervous about it. And my job hours will have to be reduced starting this week. Besides our transitioning, we have an unspoken prayer request for this week...

Saturday 8/16/08

Today was our last Saturday of the summer before school starts. And we wanted to make the most of it together. So, we planned a day trip to the lake for swimming and fishing. And my parents joined us. The weather was perfect. The lake was so peaceful! It was a good day. Jessica pushed on for the fun. But she is tired! I hope she feels ok tomorrow.

Jessica's been able to sleep in all summer. Today I tried to wake her up at 8:30a.m. to take her pills, so we could get on with the day. She didn't budge, didn't respond. I gave up. It was kind of reminiscent of several months ago when trying to get her up for school without success. School starts in 2 days.

Added at 10:30p.m.: While putting Jessica to bed tonight, she asked me how long the IV was supposed to last, because she thinks it is wearing off. She said she doesn't feel good, her whole body is worn out, and her head hurts.

Friday 8/15/08

The doctor's office called Jessica yesterday as a follow-up to see how she's doing. They ran down their questionnaire list for her to rate how she feels - i.e. tingling/numbness, headaches, sore throat, fatigue, etc. And after she rated everything, they said "so, you're about the same?" Jessica did tell them that her headaches had been better. And, to think of it, they have! They used to be every day. I was also thinking tonight that I hadn't gotten a late night or middle of the night call or text from her in a while, so I checked. And the last late night text saying she couldn't sleep and her throat hurt or she was having leg pains etc. was August 6th. So, 8 better nights! We need to remember the good times.

Today she's been pretty good. My parents took the kids to get some school things. She's just a little tired, but doing ok.

Thursday 8/14/08

Jessica's so-so today. She's a little tired, I can tell. The kids stayed home and just hung out today watching tv or playing on the computer. Jessica worked some on another tote bag sewing project.

I emailed her teachers today to give them a heads-up. I got a response from her Algebra teacher telling me the times she does tutoring (I didn't ask for tutoring!), and that they do a large amount of work in her class and the time lines for turning in the work needs to be adhered to. So much for working with us! I hope this doesn't turn out to be a problem.

We had gotten a letter from Jessica's doctor for the school that states:

To Whom It May Concern:
Jessica is a patient under my care. She has been diagnosed with Chronic Fatigue Syndrome, Adrenal Insufficiency, [etc.]...

Chronic Fatigue Syndrome is an illness that affects millions of Americans. Symptoms vary amongst individuals and commonly include severe fatigue, sleep disturbances, cognitive problems (commonly called "brain fog"), muscle pain and multiple infections. In Jessica's case, she experiences sore throat, headaches, extreme fatigue, and lack of focus/poor memory.
My recommendations are as follows:

• Please allow Jessica to attend only one-half day of school to include 1-2 periods as able to attend in the afternoon.
• Please allow Jessica to have an extra set of textbooks to leave at home.
• Please allow Jessica reduced homework assignments and extra time to complete schoolwork.
• Please do not penalize Jessica for late work or absences due to this illness.

Wednesday 8/13/08

Jessica seemed to have a pretty good day. The kids both had dentist appointments, and then hung out at my parents house the rest of the day. Jessica finally finished her summer book essay! Whew!

We ended the day with a movie - Nim's Island. If you get the chance to watch it, it's a really cute movie!

Tuesday 8/12/08

Today was my day off from work, my last day off of the summer, so the kids and I made the most of it. It's a cloudy day, so we did inside things. We went to a pottery painting place in Bryant, and the kids painted some pottery (a bowl and a car). Then to McDonalds, and Payless for school shoes. The candy store because Matthew had a gift card there. Wal-Mart for Jessica some fabric for her sewing projects (something easy for her to do when she's house-bound). And then Chuck E. Cheese - Matthew's choice of course. Then Steve met us and we went our separate ways, as they both had doctor's (or orthodontist) appointments.

Jessica was having a pretty good day, or at least held up pretty well!

Monday 8/11/08

Jessica was just so-so today. She had a headache, and was mostly tired. She said that she couldn't have made it through her two classes today. School starts next week.

Week of August 2nd - August 8th

Jessica probably had her best week this week since early April. She was focusing better, had more stamina, and was more animated, perkier, and lively. It was good to see! Tonight she's laughing and playing with Matthew.

Sunday she was tired, but that was after going to the lake for a picnic (in the heat) and even playing in the water the day before. Wednesday she had a headache, and was tired, but that was after going to the water park and swimming - quite a bit - the day before. She got up not feeling too good this morning (Friday) - tired - but later bathed the dogs, took a nap, and then got to go see her horse. She's also been working on sewing projects this week. She's not had a day where she's symptom free, but she's had a better week! Yahoo!

We don't know if her good week is mostly due to the IV, the medicine/supplements, or all the many prayers that are going up for her. One thing for sure is that we're happy to see it!