Doctor

We came home to mail in the mailbox from Jessica's doctor's office. When there's unexpected mail from them, it's not always good news. The last time we got unexpected mail, it was to announce a rate increase. This time it came with news that her doctor has gone on to new endeavors. Her doctor is no longer there! It was such a struggle finding him...finding someone that knew about and understood CFIDS! I guess that's what the clinic specializes in, so we still have a doctor there, but we'll be starting all over with someone new.

Recap

Since I'm so far behind in blogging, I'll try to do a recap.

Doctor's Visit
We had a telephone appointment with her doctor on November 5th, and went over her labwork from the last visit. Her EBV levels are still high, as well as her Mycoplasma pneumoniae. Her Cortisol, DHEA and thyroid was still off. Her Aldosterone level was still low, but he doesn't want to increase her Florinef any more than it is right now. Her B-12 and Magnesium looked better. He adjusted her medications slightly and said we'd meet again in 3 months.

School
Jessica made it through the fall semester at school. She made it to the end missing only 3 days, which is wonderful! Since 3 days (along with good grades) is the maximum to be able to miss certain semester exams, it got very close. She wasn't feeling well that last Monday, but went to school for her one class that she'd have to take an exam in if she missed any more, and then back to bed.

Overall
Jessica has done really well this semester, up until around Thanksgiving.

We went to Mount Magazine with my extended family at Thanksgiving. It was great visiting with everyone, but when we all went hiking, Jessica said she didn't feel that she was up for it, so she stayed back in the room. My parents also stayed behind, so she wasn't alone, but I just hated that she was missing out. And while we were having lunch, she had to take a nap.

Jessica (and I) signed up to ring bells for the Salvation Army this Christmas season. I thought it would be an easy way for her to get some community service points. She wasn't allowed in to the National Honor Society this year (even though she had the grades) because she didn't have enough community service. (Though she wasn't able to do anything last year.) Out of the 3 times we had scheduled to ring bells, she rang with me once, and ended up with a headache. (The headaches have become more frequent again.) This last time we were scheduled on December 19th to ring bells, she had to stay home and rest because she didn't feel good, but she saved up her energy quotient for that day to be able to go with her lifegroup to the Boys & Girls Club to have a party for them. So, it's still a matter of pacing, as anyone with CFS knows.

The weekend before Christmas, we had to skip going on a sleigh ride and looking at lights Friday night because she wasn't feeling well, and she took 2 naps that Sunday, but was able to do some shopping in between.

So, it's been a little give and take - give up something to be able to do something else - more headaches, more resting and more not feeling as good. I'm not sure why she's not doing as good. She's been more active and enjoying her friends and social life. But we're thinking that she's probably not feeling as well because she hasn't been remembering her pills as well, especially the ones she's supposed to take during lunchtime at school. Or maybe this is just CFS?

Overall, we can't complain. She's been able to be involved in things and have a life again, which is great. And she has a 2 week holiday now to rest up some.

CFS in the News

There have been several news releases out since the first week of October - that the Whittemore-Peterson Institute discovered a retroviral infection XMRV that is greater than 95% of the more than 200 ME/CFS patients tested, and they "look forward to translating this discovery into treatment options!"


Whittemore-Peterson Institute - These are the ones doing the research, and their now 31-year-old daughter has CFS. (She got it at the age of 11.)
http://www.wpinstitute.org/xmrv/index.html
and their Q&A's - http://www.wpinstitute.org/xmrv/xmrv_qa.html - There's some good / interesting information there.

CFS discovery on Good Morning America last week (video link) with Dr. Donnica Moore -
http://abcnews.go.com/video/playerIndex?id=8864348

Nature News article - http://www.nature.com/news/2009/091008/full/news.2009.983.html

It's in the Wall Street Journal too, but you have to be a subscriber to read the whole article. http://online.wsj.com/article/SB125501227713473525.html

It was also in today's (10/25/09) Arkansas Democrat Gazette - http://www.arkansasonline.com/news/2009/oct/25/lifelong-health-chronic-fatigues-virus-li-20091025/ - but you have to be a subscriber to read the whole article. I haven't read it yet, but my mom's going to save the article for us.

CFS is featured on the National Institutes of Health home page at http://www.nih.gov/. Look for the "In the News" box on the right and a link to the XMRV press release.

Here's a link to "Xplained," an article by the CFIDS Association Scientific Director about the XMRV study published on Oct. 8 in the journal Science. - http://www.cfids.org/cfidslink/2009/110402.asp

CNN reports on CFS as one of the health problems doctors still miss. http://www.cnn.com/2009/HEALTH/10/19/undiagnosed.women.problem/index.html

XMRV has generated international news coverage. The ME Association (ME is the UK version of CFS) has published this statement on its website and is also collaborating with researchers to validate the study findings. http://www.meassociation.org.uk/content/view/1042/161/

This CFIDS Association Chronicle article was published in early 2009. In "The Viruses We Live With," Association scientific director Dr. Suzanne Vernon describes how viruses like Epstein-Barr Virus (EBV) can commandeer cells and systems in our bodies to ensu...re their survival. Written before the XMRV discovery, it may be helpful background for those interested in how viruses work. (http://www.cfids.org/cfidslink/2009/110405.pdf)

Dr. David Bell's Perspective on XMRV -
Note: Dr. David Bell is a pediatrician in upstate New York who first identified an unusual outbreak of illness in his community in 1984-1985. He has been involved in patient care and research on CFS...

New York Times article - Is a Virus the Cause of Fatigue Syndrome?
New York Times Q&A with Dr. Nancy Klimas - Readers Ask: A Virus Linked to Chronic Fatigue Syndrome

Here's the CFIDS Association's take on it.

Coincidentally, the CFIDS Association kicked off a new PR campaign recently called Solve CFS - a campaign to raise $1 million for CFS research by 12/21/09.

And another good thing to come out of this so far, is that it proves that CFS is a real illness, and not psychological.

Homecoming Dance

Last night was the Homecoming Dance at the high school. Before the dance, Jessica and I had a mother/daughter day getting pampered - We both got pedicures, got her eyebrows done and a manicure, and got her an up-do at the beauty school. Ahhhh - pampering! And she looked beautiful!

Jessica went with her friend, Matt, another friend, Bree and her date, James. (I wasn't ready for this, by the way!) We all, including parents, met to take pictures first. Then the four of them went to IHOP for dinner, and then off to the dance. The dance lasted till 11:00p.m. I told Jessica to call me if she needed me sooner, but she told me she planned to stay till it was over. And she did! I picked her up when it was over, and she had a great time.

She did sleep in this morning until 10:30, ate breakfast, and then fell asleep 20 minutes later when we were watching church online (as we do often when she's not up to actually going to church). She woke up a couple hours later. We've had a quiet day at home, but she seems to be doing ok.

Last year at this time, she got to go to her Homecoming Dance for one hour - no going out to dinner before or anything else. This year she made it for the whole thing, and she had fun.

It's Been a While Since We've Had a Day Like This

Jessica woke up to her alarm enough this morning to text me from bed to say:
"I'm not feeling good :( my throat hurts; I'm really tired and I have a headache... I think I'm going back to sleep :( "
I peeked in on her, but she was pretty out of it.

She woke up at 10am and was able to get up to take a Pop-Tart back to bed with her, still not feeling too good. At noon she was sound asleep.

She woke up in time to make it to her last class. They were supposed to be workshopping (critiquing) their drafts of their fiction writing so they could edit them and turn them in tomorrow, so she didn't want to miss.

She's still tired and has a sore throat tonight, but better than this morning. She got her homework done, and she's back in bed for the night.

It's been a while since she's had a day like this.

This School Year

Jessica's actually doing really well with school and everything this semester. She had one day this past week where I got a text from her while she was at school saying she didn't feel good (really tired, sore throat...) and wanted to go home and take a nap. Since she's driving this year, she drove herself home (just 1/2 mile), took about an hour and a half nap, ate lunch and went back to school. So she only missed lunch and one class that day.

This weekend was a fairly busy weekend. Friday night Jessica went bowling with a friend. Saturday, she and I and my parents went cold weather clothes shopping for school clothes, as well as shopping for a Homecoming Dance dress. Sunday was a birthday lunch with Steve's side of the family. Then we had a Dodgeball Extravaganza (dodgeball, laser tag, sumo wrestling, electric bull riding, carnival food, etc.) at church for the youth. Steve & I were helping with the food team. It was a terrific event for the kids, which drew in 600 to 700 kids that night! And lots of fun! Jessica mainly walked around with her friends, but she did ride the bull (and has been sore since). It was supposed to last until 8:30, but at 7:00 Jessica had had enough and was tired. I left my duty of serving drinks early to take her home and get her to bed.

She still has to go to bed earlier than the normal teenager, still gets tired, still has trouble focusing on occasion, still gets headaches and sore throats... But she's so much better than last school year! She's able to have a life this year and a social life. She goes out with friends. She has friends! Actually has quite a few friends - We're having trouble keeping up with who all her friends are - which is a wonderful thing! It's especially good to see after seeing her basically stuck in the house all of last year with just us - her family.

ABC News Story on CFS

Feeling Chronically Fatigued?

Shared via AddThis

Mono Update

So far Jessica hasn't missed any more school, except for that hour and a half at the beginning of last Thursday. Yesterday I had trouble getting her up for school. She evidently didn't sleep well the night before and wasn't feeling well - tired, sore throat... But she still managed to make it to school. I wasn't sure if she'd make it all day, but she did - which is evidently thanks to the fact that she took a half hour nap in her first class!!

Jessica's friend that was diagnosed with mono on the same day last week has been sick for a week with her fever staying up at 102.8. She was really sick!

Jessica hasn't seemed to be too bad - for it to be mono. Maybe that's because of the anti-viral medication that she's on. At the directions of her CFS doctor, we increased her anti-viral last week back up to 3 pills a day instead of 1. Coincidently, a friend sent me an article that was just published about treating mono with Valtrex, the anti-viral, (as well as a new anti-viral drug not yet on the market). It just seems to confirm that we're doing the right thing!

At our family doctor's urging, I took Jessica back to get her re-tested today for mono to see if it was truly positive or not. And - it's still positive.

Rough Weekend, But Back On Her Feet

Saturday morning, Jessica was sniffing and coughing, but made it to her ACT test. She doesn't feel like she did very well, and didn't finish the math or science sections. This is when it would've been nice to have had the extended time accomodations. We'll find out her score in 3 to 8 weeks.

She ate lunch at Arby's with a friend, and then spent the rest of the day on the couch. She's still feeling blah - sore throat, coughing, etc. She was invited to a movie that night and actually asked me if she could go. I felt that she was irritated with me for saying no even though she knew she was sick and didn't need to. She even wrote on Facebook how she "HATES being sick and wants to be out with her friends." (Of course that hurts my heart, as I hate for my kids to be sick.) But by 8:00 she had curled up in a ball facing the back of the couch, not feeling well, and asking for a cold rag for her eyes.

Sunday morning she woke up not feeling well at all - coughing, sore throat, achey, head/nose stopped up, and just feeling crummy - and didn't get out of bed. I took breakfast and lunch up to her. I was wondering about the flu, but still no fever. She took an hour nap, and at dinner she made it out of bed to join us and had a smile on her face. She's not over it, but much better!

Today (Monday) I got a text from her while she was at school, saying her calves were tightening up pretty bad to the point that it hurt to walk. The nurses gave her ibuprofen and talked to me about the fact that she should be checked for blood clots. We've had this tightening problem several times before and it's not specific to one leg, but seems to be an OI issue. So, I took a Gatorade to school to help with the problem. She didn't want to miss anything anyway, and seems to be better now that she's home.

Mono or Not, It's Something

Jessica got to school Thursday by 9:30 and made it through the day, and made it through a full day today (Friday). She didn't finish all of her homework (Creative Writing 2nd draft of an essay) the night before since she didn't feel well, but she made it to class.

Since we had our doctor's appointment with the nurse practitioner instead of our regular doctor, I talked with our doctor the next day. He said we need to watch and see how she does clinically - worsening fatigue, fever, etc. Then he wants to test her again in a week, saying that the rapid tests aren't always the most accurate.

She's been feeling so-so - coughing, sore throat, kind of blah feeling - but didn't seem too fatigued for it to be mono, or not too bad. Until tonight...

Tonight, she seems to be worse and said she doesn't feel very good. She's got more cold symptoms (sniffing, coughing...).

She's signed up to take the ACT test tomorrow morning. It's a four hour test. (I actually submitted a request to get her extended time because of her CFS, but it was denied.) I'm not sure if she's going to be up to it or not.

Mono Again?

Matthew's been home sick for the past 2 days, with a sore throat, coughing, and just not feeling good. But he hasn't had any fever, so I haven't taken him to the doctor. I figured it was allergies or sinuses or something like that.

Jessica had a doctor's appointment today with the nurse practitioner at our family doctor's office. I'd prefer our regular doctor because he knows all of our history, but he was booked. Flu season, ya know. I was taking Jessica to the doctor to have a spot on her hand checked that was hurting her. It seems to be a cyst. But, she's also had a really bad sore throat yesterday and today, which she says is not her "normal" sore throat, so we had that checked too. The nurse said it is red with drainage, but didn't look like strep. Jessica found out earlier today that a friend of hers was diagnosed with mono this morning, so they pricked Jessica's finger to check, just in case. And, she tested positive for mono! Again!

How can we do this again? She had at least a mono-like virus in January of 2007. And then had EBV mono in January of 2008, which started all of this [CFS] where we are now. What does it mean for someone with CFS to get mono? I asked that question of the nurse practitioner and she said "it's not good." What does that mean?

Jessica actually doesn't feel bad right now except for a really bad sore throat. Will the fatigue hit later, or will the medications that she's on now help it not to be bad?

I think Jessica's more upset that she can't ride her horse for 4 weeks!

Teen With CFS - Through Her Eyes

The following was written by Jessica (age 16) for her Creative Writing class, posted with her permission.

A Time to Heal

In January of 2008, I came down with Epstein Barr Mono. Even though, several months later, the tests for the virus came back negative, I still felt terrible. I went to doctor after doctor and they all told me the same things: “There is nothing wrong with you,” “It’s all in your head,” and “You are just depressed.” Each time I walked away from these instances more and more frustrated. Finally in June of that same year, I went to see a Fatigue specialist in Dallas, Texas who diagnosed me with Chronic Fatigue Immune Dysfunction Syndrome, or CFS for short. CFS is a group of many problems that are going on within me, causing extreme fatigue and a series of other symptoms.

Some days I would not wake up until eleven o’clock which was very strange for me since I was normally a morning person. Once awake, imagine lying lifelessly there in bed, and not being able to move because you have no energy what-so-ever. Not only does your body feel like a pile of noodles, but your throat is on fire, and it feels like someone has taken a frying pan and cracked you on the head with it. This is how it was for me for many months even after visiting the specialist.

The doctor put me on tons of medication, trying to balance my out-of-whack system. If you were to look at my “pill case” you would have thought that it belonged to an old person on the brink of death. But no, that’s me taking thirty-five pills a day!

In addition to all of the medication, I was restricted from doing many of the things that a normal teenager would be doing: movies, sports, or even school. Anything that required much energy was an automatic no-go.

One day I was sitting in the love seat in our traditional living room watching TV when I had an urge to go out riding. I had been feeling pretty good that day so I took a chance, “Momma, can we go to the stables so that I can ride just for a little bit?” Immediately she responded from the kitchen, “No, you don’t need to get worn out.” At that moment, I could not hold it in anymore; I began screaming and crying, letting out all of my frustration and emotions that had been building up. “You won’t let me do anything!” I yelled at my mom. I became angry with my parents, the doctors, God, or anyone else I could blame for my sickness. After my crying spree was over, I thought about all the patients in the hospital with life threatening conditions, and here I am bawling because I am restricted from doing just a few things. “How selfish am I?” I think to myself. Right away I prayed and asked God to forgive me for my childish display.

A couple of weeks later, two lifegroup leaders from my church came to visit me and they gave me some words of encouragement. Ever since I had become sick, I had quit going to church altogether and (even though I hadn’t noticed it) my relationship with God was not as strong as it had once been. After their visit, I slowly but surely began attending our youth ministry more often.

As my bond with Christ began to strengthen, so did my physical health. Before I knew it, I was going to school for half a day, and back atop my horse. When I placed all my hope in Christ, He healed me. Since CFS is a chronic illness, when I say “healed” I do not mean completely. I still am not back 100%, but I am heading there. I still cannot do everything that I want to do, but I am doing more. I still have not completely adjusted to this restricted lifestyle, but I am getting used to it. This nagging condition will never go away; and I am ok with that, knowing that the Lord will use my experience to make an impact on someone else.

Still Going...

We're at the start of the third full week of school - full days - and so far, Jessica hasn't missed a day; though Thursdays have been a little rougher.

Jessica is taking Creative Writing class this semester. She picked this class and she loves it, but Wednesday evening and Thursday evening I found her in her room trying to do her Creative Writing homework, but having writer's block - or an inability to focus. She's had trouble with focusing, due to her CFS, and this is one class that will be hard on occasions like that.

We actually went to two football games this Labor Day weekend - the high school football game Friday night, and the Razorback game Saturday night. Jessica hung out with her friends in the student section Friday night at the game and seemed to do fine. She missed so much of this last year, and it's good to see her able to participate more this year.

Saturday night, she was tired, but wanted to go to the game and made it through that one just fine too - though we did consider getting a ride home at halftime (and letting the guys stay).

Sunday morning, though, she shuffled downstairs and plopped in her chair. She didn't feel good - tired with a really bad sore throat. So, we stayed home from church, and let her rest. She even passed at my parent's offer of chinese lunch buffet. But, by that evening she was able to go to the youth services at church.

So, like the Energizer Bunny takes a licking and keeps on ticking, Jessica's still going and doing pretty good.

We Made It! - First Full Week of School

Jessica made it through her first first full week of school with classes all day. It started off pretty good. The usual routine is - come home and do homework and get to bed by 8:30. She did take our dog on a short walk down the street (maybe 1/2 mile?) a couple of nights. And one day, she met some friends at Sonic for a cherry vanilla root beer and a short visit - to celebrate a friend's birthday - on her way home from school.

Most nights so far, the homework hasn't been too bad, so we've had a little time to unwind in front of the tv. We've found that we love the dvr! We record our favorite shows and watch them the next night. Why watch them the night they're on when you can watch the following night and skip commercials! That and it makes it easier to make our 8:30 bedtime. Wednesday night we were watching "America's Got Talent" from the night before, when Jessica asked how much longer was left. I realized that meant she was tired. It was just 7:30, but we turned off the tv and got ready for bed.

Thursday morning she said she was tired, but headed on out to school. (So far, she's been waking up with her alarm ok.) I noticed on Facebook a little later that morning that she'd changed her status to "Jessica is not feeling well :(." So, I kept my phone closeby - but she made it through the day. She said that morning at school, she felt really tired, her throat was hurting, and everyone was telling her that she looked pale. She laid her head down on her desk, and her teacher gave her some papers to pass out - telling her that getting up and passing out the papers would help her wake up. Ugh! I did email the teachers explaining CFS, but I'm not sure that everyone still gets it. Jessica dozed off in class the other day, so I thought it was best that they have a little background.

In Jessica's favorite class, Creative Writing, they are writing they're memoirs. Jessica chose to write on her journey with CFS and how her faith has helped her through it. As she was working on her second draft of it last night, she read it to me. I was in tears by the time she was through. I'm amazed at how she has such a good handle on things, her strength, her faith, and her willingness to share her whole story including the ups and downs. They've been reading their memoirs in front of the class. In this memoir, she talks about being healed though "this nagging problem [CFS] will never go away, and I'm ok with that, because I know that the Lord has something better in store for me." I am so very proud of her! And guess what she titled her essay - A Time To Heal.

Overall, it's been a pretty good first week.

Time for School!

School has started. It started last Wednesday - August 19th. Why does the summer have to go by so fast?!

Jessica is scheduled for a full day of classes at school this year. We've also put her back in her pre-ap classes. This first semester consists of Oral Communication (speech), Pre-AP Biology, Pre-Cal/Trig, and Creative Writing. Since she missed some classes and credits last year and didn't get any science in, she will be taking two science classes this year, and is in Biology with all sophomores, with her being the only Junior in the class. There was whispering going on in the class, and she was being called the "new girl," so she explained that she wasn't the "new girl," but was a Junior and had missed last year because she was sick. (She gave them the abbreviated version.) Besides taking Biology with all sophomores to their amazement, Jessica seems to like her classes. She loves Creative Writing.

Jessica turned 16 over the summer, and we have slowly been letting her drive alone. She's got my hand-me-down car - a red 2001 Pontiac Grand Am (with over 100,000 miles on it) - but not a bad teenage car. (When I was a kid, I got my dad's Chevette and Plymouth Horizon!) Anyway, she's driving herself to school and driving she and Matthew home from school, since school is just a mile away.

So far school seems to be going pretty good. She's getting to bed by 8:30 every night, which is early for normal kids her age. She's even come to me telling me she's tired and going to bed. But, last night there was a football game, and a friend wanted her to go. The game didn't start till 7:30, so it wouldn't have been worth it with an 8:30 bedtime. We ended up telling Jessica that she couldn't go to the game; I hate that, but let's get at least one full week under our belt first before we try anything else.

But so far so good. Jessica may get a little tired in the evening, but she's holding up pretty well. She likes her classes, and is able to be more normal. It's been good hearing her talk about friends and making new ones and being more interactive this year, since she missed ALL of that last year.

We hope her improved health continues, and the school year continues to go well.

Flu and Swine Flu

Jessica's doctor gave us a prescription for Tamiflu - just in case it's needed. He told us that Jessica shouldn't get the flu shot, mentioning something about Th1's and Th2's. (Evidently not a good idea with her immune system.) He did say the flu mist was an acceptable option for her if it's available.

I'm a little concerned about the swine flu that's going around, particularly with the start of school coming up. I've heard of several church youth groups that came back from summer camp after being exposed to it. People we know that have family members with it. We had our first death in Arkansas from it the other day.

Matthew and Steve and I will get our flu shot, and we will all practice good hygiene and try to stay away from germs as best we can.

On another note, Jessica's been a little tired from our trip. She finally finished her school summer reading assignment and essay yesterday. Finally! She was having trouble focusing to get it done. She still needs to refine the essay a little bit. School starts in a week!

Dallas and The Doctor

We had a doctor's appointment scheduled for Monday in Dallas, so we added a few days and made it a mini-vacation. We even managed a day at Six Flags.

The day we left our house for the 5-1/2 hour drive to Dallas, Jessica wasn't feeling well - really tired and her throat hurt - so I wasn't sure how much she could handle. She slept in the car. And the next day, was the best day weather-wise (least chance of rain) to attempt Six Flags, so we went. She was tired, so we took breaks. There were a few times when she said she was ready to leave, but she held out - especially for Matthew. We were in line for one of the boat rides and Jessica said she needed to sit down, so we got out of line and went to an inside country music show. (Jessica likes country music.) She sat while Matthew played carnival games. Etc. There was a free concert that evening with Jessie McCartney, and Matthew wanted to go see it, so Jessica held out till then. We listened to a few songs, and then headed for the park exit. Steve pointed out a dark cloud that he thought looked like a wall cloud. We, along with everyone else, were leaving the park at the same time - trying to beat what looked like a bad storm. I panicked and tried to get everyone to run to the car, but Jessica didn't have anything left in her. So, we walked - at Jessica's pace. Luckily, we made it to the car just before the bottom fell out. It was a rough drive back to the hotel though.

Monday we went to Jessica's doctor's appointment. He dropped her Valtrex anti-viral dosage down from 2 pills a day to 1 pill a day. He told us that we could quit 2 supplements - Anti-viral and Arteminisin - saying they had done the work we needed them to do. There were also 2 more supplements that he said we could step down the dosage of and get off one at a time, and see how she does. (Both of these are for energy production.) He did increase her thyroid medicine a little bit. And he gave us a prescription for Provigil to help with her focusing problem. We haven't filled that prescription yet, because we're still researching. He took blood, and we'll find out those results at our next appointment, which isn't until November. Overall, it seemed like a good appointment.

And Jessica got to sleep on the ride back home.

The Summer of 2009

I'm catching up...

This summer has been a pretty good summer. And, looking back to last summer, and even this past spring, we can really see that Jessica is doing so much better. Last summer (2008), I remember when Jessica so badly wanted to get out of the house if just to go to Target or the store with me, but wasn't up to it. This summer, she's done more than I thought she'd be able to. And I'm glad she's been able to enjoy being a teenager, enjoy her horse again, get out and do some things, have some independences, spend time with friends, etc...

She took a Leadership Class at church that met one day a week for about six weeks. This included writing three or four essays; one overnight canoe/camping trip to the Buffalo River developing team skills; and one day trip to the University of Arkansas Athletic Department in Northwest Arkansas to meet several leaders in the athletic field. She may have slept the next day, but she survived it all, had good experiences through it, and graduated with her team winning overall.

This summer she got to do the summer job she had to give up last summer (because of her illness). She worked at the stables in exchange for lessons. She would've liked to have been able to work every day, but we settled for what we hoped she could handle - Monday and Friday mornings only - 7:30a.m. to 11:00a.m. Her job usually consisted of feeding and watering the horses, and maybe working a horse… (The feeding usually took an hour and a half since some had to be sat with so the more dominant ones didn't eat all their food.) Jessica was in her element, and she got a riding lesson out of it too.

Jessica may have been tired here or there, and had the one real crash, but the summer overall has been good, and we've seen much improvement. We hope it continues.

Crash!

Maybe I should've kept quiet. I told Jessica today that it had been a little while since she'd had a crash.

Jessica made it through her leadership class Thursday, working at the stables Friday and a lesson, and then a movie with a friend. And then it slowly hit.

Friday evening she got one of those all-of-a-sudden on-one-side headaches.

Saturday she was tired, but we had plans to go to the lake for the day and she wanted to go, so we didn't change our plans. We had a picnic overlooking Lake DeGray. It was a beautiful (and hot) day. But she got another headache and just wasn't feeling well. So, while Steve and Matthew went swimming in the lake, Jessica and I stayed in the car with the air conditioning running. I read a magazine and stayed to keep her company, and she slept and tried to get rid of her headache.

Today (Sunday), Jessica has been very tired. She got up and ate breakfast with us, watched church on tv, and then went back to bed for at least 3 hours. And the rest of the day, she's just been hanging around the house - tired.

This week's leadership class is about teamwork, and they are going on a float trip. For the two days prior, Tuesday and Wednesday, she's to stay low-key. We're hoping she'll make it through the float trip ok.

Do we need to cut something else out or cut something back more? I guess we'll play it by ear for a little while longer.

No News Is Good News

No news is good news, or for the most part at least. I've been busy with life and enjoying the summer, and have been slacking in the blogging world. But, Jessica's actually been doing pretty good lately. Maybe having the summer here and school over helps too.

We are so relieved that school is out! And she got all A's! Jessica only got 3-1/2 credits instead of 8 this past year, but hoping this coming year will be much better.

Jessica went to church camp the second week of the summer. This was the same camp that we had to cancel last year because she was too ill. It was a week in Panama City Beach, Florida. Not knowing how she'd do, Steve and Matthew and I made reservations in the area and planned to be nearby if we were needed. She didn't need us. There was one day that she had a headache, and once when she struggled to stay awake during an evening worship, but otherwise she held up really well! They had plenty of free time in the afternoons, so she was able to go back to the cabin and take a nap as needed. They rode go-carts, spent time on the beach or at the pool, went shopping, had group discussions and worship daily, etc. She had so much fun, said the worship was amazing, loved listening to the speaker, and can't wait to go back next year. She slept most of the way home (11 hour drive), but hasn't had a real crash since the trip.

Jessica's plan is to have time to improve even more over the summer so that she'll be able to handle a full school load starting in the fall. But, she's also scheduled a pretty busy summer.

School may be out, but both of the kids still have a summer reading assignment. Matthew, so far, just has a book to read. Jessica has a book to read and an essay to write. (We never had any homework over the summer when I was a kid!)

Jessica also needs to take the ACT this year, so I figure the summer is the best time for her to study for it, when she doesn't have other schoolwork to do. So, we've bought the study manuals and I'm hoping she'll get some study time in.

Our church is offering a leadership class for the next 10 Thursdays (8a.m.-3p.m.), and Jessica will start this Thursday. It is a good opportunity.

She's also started the job that she had to put off last year because she was too ill - working at the stables with the horses - mornings only (8a.m.-11a.m.) - and being paid in lessons. The stable owner would like her there every weekday, but I told her we could see how she does with 2 mornings - Mondays and Fridays. She started last Friday, and her assigned duties that day were basically just feeding the 15 horses - which took 1-1/2 hours since some have to be watched so the dominant ones don't get all the food. Then, they called it a day, and she got her pay - a lesson with Mia. Monday was her second workday, and someone had already started feeding the horses when she got there, but she finished by doing the last pasture. And then doctored a horse's abrasions and one's abscess. (This is good experience for her, since she may become an Equine Vet.) Then, she got her lesson - again, before the three hours was up. The stable owner did bring her an extra snack once, saying she didn't look good. It's been extremely hot and humid here, but she is carrying a jug of water with her.

Jessica is a little tired today. I think she's still recuperating from Monday at the stables. So, today is a take-it-easy day.

Otherwise, the summer includes resting, playing, and just hanging out. Our 3-4 foot deep pool is up in the backyard, and Matthew and Jessica are enjoy playing together!

Updates

I've been slacking in the blog world, so here's a brief update.

Jessica missed one day of school on Tuesday May 5th - stayed in bed all day with meals being brought up to her.

Last week, she had a few not-so-good days, but she made it to school every day. Though she did come home and go to bed for a nice long nap a day or two.

Over the last week, Jessica has an ankle bothering her. She fractured this ankle in the fourth grade, and has had a weak ankle ever since. A week ago last Thursday, she was riding her horse, and when it was time to leave, her ankle was hurting - so maybe she twisted it or did something in the stirrups. Three doctors later, we think it's an achilles heel nodule and tendonitis, but no one seems to be sure what to do about it. So, we're wrapping it, trying to stay off of it, and taking anti-inflammatories ... and hoping it's better before her youth trip in three weeks.

We had a busy weekend this past weekend, but a good weekend. Jessica and I spent the night with my parents in order to help with a garage sale the next day. But that meant not sleeping in our own bed, not getting a good night's sleep, and waking up early. When Jessica was helping, she sat in the lawn chair and kept the books, but after a while, she went back in to rest on the couch. Sunday included a trip to Wal-Mart, a meeting at church, Sunday night youth service, followed by an outing with her church Lifegroup friends to the ice cream shop.

So, today (Monday), she's in bed - not feeling well, really tired, sore throat - and missing school. I do wonder though... This weekend was just two busy days; her youth trip will be five straight fun-filled days of activities...

Last Week of April

While Matthew didn't get off the couch all week (Monday through Friday) except to go to the bathroom, due to strep throat, Jessica did ok and made it to school all week.

There were two nights in a row that she had leg pains or her legs felt like they were tightening up. She hasn't had that in a few months. She may have been tired here or there, but not too bad. She even took the dogs on some short walks a few nights.

Catching Up

I’ve been out of touch with the blogging world lately, so I’m catching up. Last week was pretty good. This week wasn't quite as good, but it seems that the crashes are farther between and not as intense or don't last as long.

Jessica missed one day of school this week. Tuesday she stayed home and didn't get out of bed (It had been a while since she's done that) - not feeling well, sore throat, and worn out. Lunch in bed. Dinner in bed. And then we all piled in her room that evening to watch The Biggest Loser with her. But she was back at school the next day.

She's had some more down times where she just didn't feel that good or tired, but she's hanging in there.

I've got to try to get her up early this moring, as she's got a friend picking her up at 9:00a.m. for her friend's horse competition show. (She usually can't wake up until 9:30!) It's an all day event, so I'll be available of course if she needs me sooner. She's excited about the horse show, so I hope she's able to handle it all.

Holy Week

After Jessica's not-so-good day on Monday, the rest of the week was pretty good.

The kids and I had Friday off for Good Friday, which was nice. We ended up at the stables, so Jessica could get in her Mia time. Then a quiet Friday night movie night at home watching Meet Dave.

Saturday we went to the movies - Jessica with a friend to see Hannah Montana, and Matthew and I to see Monsters vs. Aliens. The rest of the day was spent just hanging out around the house.

Sunday, Jessica woke up a little sore and a little tired, but it was Easter Sunday and she pushed on for all four of us to make it to church. After lunch, Matthew told us that we had to hunt Easter eggs as we do every Easter. After we each took at least one turn hiding the eggs and finding them, Jessica plopped in "her chair" to rest. I'm not sure that she felt like getting out, but we had dinner plans with the family that night, and she held up ok. It was a good Easter.

Here We Are Again

Jessica seemed to have a pretty good time at the bonfire Friday night. It turned out that it was also a going away party for a boy at church, and it looked like there were quite a few people there. I dropped her off at 7:00 and picked her up at 9:30. When I picked her up, she said they had been playing football! Football?! I'm thinking that probably wasn't the best idea for her, but I guess she had fun and that's important. She said she was the quarterback so she didn't have to do as much.

Saturday the kids helped me do some much-needed house cleaning. (I can't seem to keep up!) Jessica cleaned up after Pumpkin (her rabbit) and folded some clothes. And then after Jessica finished her homebound Health class homework, I took her to see Mia. She played with her on the ground and rode a little. We had dinner plans with my parents, so that made sure that we didn't stay at the stables but a short time.

Sunday, Jessica was sore and achey. Getting us to church has been hard, because mornings are hard for Jessica. Yesterday was the first day in a while that all four of us made it to church, and she went not feeling so good, but she went! And it was good.

Today, Monday, Jessica was again really sore. She said she felt like it was getting worse instead of better. I guess I can't blame it on the football, as I look back on my posts and see that she started getting sore the day before that. She did make it to school today, even though she wasn't feeling her best. After school she laid on the couch and asked if she could dictate her homework to me. But she only got through a little of it when she gave up, said she was done, curled up and fell asleep beside me on the couch. We'll try to finish the homework a little later.

Ups and Downs

It's been a so-so week, a week of ups and downs, but not too bad. Monday started with a really bad headache - so bad that she wanted to take her new headache prescription not too long after taking ibuprofen - that's how bad she felt. She was also tired and had a sore throat, and stayed home from school - in bed trying to sleep off her headache. By evening she was upright on the couch, but still not feeling well.

Tuesday she was still a little tired, but no headache, and was back in school for her two classes.

Wednesday she might've been a little tired that morning, but was better and even wanting to take advantage of the nice weather to go see Mia after school.

Thursday, the kids were out of school for parent / teacher conferences. Jessica was pretty tired and not feeling too perky. She tried to work on homework that morning and fell asleep and took a nap. That afternoon and evening, she struggled to get through her homework as she lacked any focus. She was sore and achey by evening.

Jessica and I went to meet with her advisor at school to plan her schedule for next year. We don't know what she will be able to handle next year, but Jessica has hopes of getting better over the summer. She also wants to be in pre-ap classes. She planned her schedule herself - a full day of school, pre-ap classes, 2 science classes (since she didn't get one in this year), etc. We can always adjust it in the fall if we need to. One semester at a time; one day at a time...

Friday (today) Jessica hasn't been too bad. Still a little sore, and maybe a little tired. But she's off to a bonfire with friends tonight.

Last Day of Spring Break

Jessica was a little tired this morning, but she said, with it being the last day of spring break, she should be able to do what she wanted - which, of course, was going to see Mia. So, she and I went to the stables. She played on the ground with her, played at liberty, and then got on and rode a little. Mia did well, Jessica was happy, and got in her Mia time. And she drove "her" car out there. When we got home the guys were outside playing ball, and they went to the park to the basketball courts. The last hoorah of spring break.

But it wasn't long after we got home, that Jessica said she had a headache. So tonight, she's tired and just not feeling well, with a headache.

Tomorrow's the start of a new school day, but at least it's a 4 day week - with Friday being a teacher / parent conference day to plan for next year. Something for us to be thinking about...

Pile of Pills

Here's Jessica's daily pile of pills. At 15 years old - to be taking so much! Sometimes we've wondered if she needs it all. But then again, she was doing worse before she was on anything at all.

A year ago, she couldn't swallow pills. Yesterday was the first day that we didn't have to cut the bigger pills.

Saturday

When Jessica asked me this morning what we were going to do today and I told her "nothing," she said "good." When I'd ask her how she was feeling today, she shrugged her shoulders. She was tired. Actually she said she felt like she was "a little worn out" all day.

She did clean out the inside of my old Grand Am - what's probably going to be her car when she turns 16 this summer. The rest of the day was spent watching tv or just hanging out at home. She played Playstation with Matthew today or kept him company while he was playing, and we all congregated in her room (with Jessica laying on the floor curled up with her rabbit) laughing and watching Matthew beat the socks off Steve in a Playstation game of Star Wars.

Spring Break

Spring break week has gone by too fast! The kids and I had a pretty good staycation. It's just never long enough.

Monday was fishing.

Tuesday both of the kids had orthodontist appointments, and then we went to see the movie Race to Witch Mountain.

Wednesday Jessica wanted to take advantage of the fact that the rain had stopped, so we went to the tack shop and then to spend some time with Mia. Matthew and I played ball at the stables while Jessica was riding around. Jessica was somewhat tired. She held up ok, but it did seem to me that she was just sitting still on top of Mia (without riding) sometimes, as if just to use her as a place to rest. She got in her Mia-time; Matthew and played ball, and then he helped the stable owner chop some wood. So, it was a good day.

Thursday we went to Playtime Pizza to play. Jessica and I did one of the dance arcade games (similar to Dance Dance Revolution), and it was more of a workout than I thought it would be. The kids played some other arcade games until Jessica asked to sit down because her legs were tired and sore. We rested until time for our laser tag game to start - Matthew came in 2nd place, Jessica came in 5th, and I came in 11th out of 18 players. Then Jessica was tired and ready and asking to leave. It was a fun outing.

Friday was our do-nothing day. It was planned that way. Jessica said she just wanted to sit on the couch and watch tv. She was tired. She did play Playstation with Matthew, or at least kept him company while he was playing. It was just a lazy day. We ended the evening relaxing at home while watching the dvd movie Bolt.

Fishing

The kids and I had planned on going fishing during spring break. Today seemed to be the best day for it, as it might rain the rest of the week. Steve's in the middle of his busy season - tax season - so it's just me and the kids. I invited my dad, and he came along too. But, can you believe it, I actually baited my own hook (with a worm even!) for the first time ever!

Anyway, we took a picnic lunch and headed to the river about noon.

Around our house, our usual question is asked of Jessica daily - "How do you feel?" And this morning when I asked her, she said she was ok. I know I asked her more than once, because she didn't seem too perky and I could hear it in her voice, but she still said she was ok. Until we got safely to the park - then she admitted that she was a little tired.

The four of us fished, with only my dad getting a bite here or there but no one catching anything. Jessica gave up quicker than anyone, and laid on the picnic blanket and took a nap. It was a beautiful day - probably upper 70's and windy - and we actually got a little sunburned.

The kids and I went out to a catfish restaurant for dinner with my parents. After dinner, Jessica was tired, but it's been a fun day.

The Weekend

It was a pretty good weekend. Saturday, my parents, my brother, Jessica, Matthew and I went to watch the horses run at the horse races. A fun outing. When I asked Jessica how she was holding up while we were there, she said she was ok because she was just sitting.

Sunday, we met Steve's family for lunch. Then Jessica hung out with Mia (no riding at all) for a short while. And then she made it to the evening youth church service. She had a headache coming on when she got there, but it seemed to go away. We ended the evening watching Meet The Robinsons.

To Finish The Week Off

This week hasn't been too bad. Jessica may have been a little tired here and there, but she made it to all her classes and held up ok.

A part-time lady at work today asked me how Jessica's been doing, and when I told her that she was better, she asked if this was a temporary better or a permanent better. She said she asked because it seemed that she'd been "better" before, and then.... Right now, we're going to enjoy the fact that she's better.

Wednesday, she was tired that morning, but when I picked her up from school she was ready to go see her horse. It was a beautiful sunny 82 degree afternoon with no homework, so I took her. She played with her on the ground and then rode just a little. We weren't there long. She was tired that evening, but it was a happy tired.

Yesterday and today she's felt pretty good. After school today, she again asked to go see Mia. While I was cooking dinner, I drove her out to the stables. She said she just wanted to "chill" with her today - so nothing strenuous. Jessica just enjoyed being out there.

Today was the last day of school before spring break. I've been making a "fun" list for the kids and I for next week. On our list of possibilities are - pizza & arcades, movies, bonfire to roast hot dogs, picnic, fishing... Enjoy your spring break!

Happy Saint Patty's Day!

Happy St. Patrick's Day! Did you wear green? I actually forgot that it was even St. Patrick's Day until later in the morning.

The morning started off slow for Jessica this morning. She started out the morning saying she felt the same as yesterday - tired!

But she was better, and did ok through the day. She made it to school to both classes. She was having trouble focusing all day, so to make it through her homework, she dictated and I typed her vocabulary words. It made it easier to get through them. It was a beautiful afternoon, so we sat on the trampoline with her History book and the laptop.

We finished homework in time to end the evening relaxing in the living room in front of the tv and The Biggest Loser. Jessica's in a good mood tonight and seems to be feeling better.

Starting The Week Off

Jessica's not feeling too well today - really tired and a sore throat. But, she pushed on and made it to school. Maybe she's improved since a few months ago, but she still can't do too much, and this weekend's shopping trip was evidently too much.

She came home with a headache and not feeling well, and homework in both classes - Julius Caesar study questions (yuck!) and 50 History vocabulary words (that he again expects an essay on each word). So, here we are (again) with lots of homework and not feeling up to it.

I finally heard back on her 3rd class (Health) that should have started last Friday. They're working on getting the homebound teacher set up and we should hear something and start getting the work for that class by tomorrow.

The Weekend

Jessica and my mom went shopping Saturday for swimsuits and summer clothes. They were gone from 11:00 till dinner, when we met them with the rest of the family to celebrate my grandmother's 94th birthday. Jessica did pretty good all week and has seemed to have improved, so this will be a test to see how she fares after an afternoon of shopping. My mom told her that she better not miss any school or they wouldn't get to go together again. I don't really like shopping, but the two of them do, so I'm happy for my mom to take her if Jessica can hold up ok.

Sunday, Steve & Jessica went for a quick visit and short ride in the arena at the stables. (Mia did well.) And then we went to Steve's mom's for a late lunch. The rest of the day was spent at home. Jessica and Matthew spent most of it playing video games together.

Jessica's been in a good mood and feeling good. We'll see how she is tomorrow.

A Decent Week

So far it's been a decent week. Not normal, but decent. A little tired here and there, but so far, Jessica's made it through her whole school week.

She was sore and achey Monday. She's been somewhat tired Wednesday and Thursday, but made it to class and through both of her classes.

And just when I was thinking that I hadn't heard from her in the middle of the night in a while... Monday night and Wednesday night, she texted me at 11:30p.m. saying she couldn't sleep, so we broke back out the Tylenol PM. Then she slept in till 9:30 or so.

She isn't able to get up earlier, and she has another class (Health) to add to the mix starting tomorrow. (I just realized that the 4th 9 weeks starts tomorrow!-How did that get here so fast?!) Since she can't make it to a 9:40a.m. class, this one will need to be homebound. I had kind of hoped that she'd be up for a 3rd class at school this 9 weeks and then a 4th class starting in the fall.

Tonight Jessica's working on a sewing project - finally getting around to sewing her rug - a (homebound) project that we got her last summer - something fun to do without much exertion from the comfort of our home. The simple things are good!

Playing Catch Up

I haven't updated the blog, so it's time for me to play catch up...

This past weekend was a decent weekend... a quiet weekend. Friday night, I dropped Jessica off at Chili's for dinner with a friend - an easy quiet way to get in some friend time, which is much-needed and does good.

Saturday the kids went to Wal-Mart with me. While I was grocery shopping, they were looking through the garden center and the video department (so it wasn't as much walking around). Jessica then got to go see her horse. It turned out that Mia didn't cooperate, and Jessica came home stressed and frustrated. We finished the evening on the couch watching Prince Caspian.

Sunday was a quiet day at home with the initial adjustment to the time change. The kids worked on homework together. (They get along so well!) And then they had gotten this idea that they wanted to plant a garden this spring. I reminded Jessica that this would end up being one of her spoons, but it's what she wanted to do. So they started planning their spot in the yard and getting it ready by digging up a small square of dirt. Matthew did most of the work, but Jessica did do a little dirt moving. She went to bed sore.

School Days

I've been concerned about Jessica's credits at school and how this will pan out with the timing for graduation with her class. I emailed her counselor who has told me that they do not allow students to attend any summer school to take any class unless they have failed the class, and Virtual High School is not an option. As far as her credits go:

7.5 credits from 9th grade
1.0 credit for Algebra 2 last semester
2.5 credits for English, History, and Health this semester

It takes 12 credits to be classified as a Junior, but under these circumstances, her counselor will go ahead and classify her as a Junior.

If she gets 8 credits next year, that will make 19. It takes 17 credits to be classified as a Senior.
If she gets 8 credits her senior year, that will make 27... She just needs 26 to graduate.

We'll just take this one semester at a time....

Mid-Week

To catch up -
Wednesday - Jessica was in a good mood and doing fairly well, besides the fact that she she was having trouble focusing or concentrating. And that fact doesn't go along with a history test and homework very well, but she did ok on the history test. Part of the homework had to save for the next day.

Thursday - Jessica had a decent day up until the evening. She came home with quite a bit of homework, and when she was just starting it, she got one of those all-of-a-sudden one-sided headaches. She was a little tired too, and after dinner I could see that she really wasn't feeling well, so she laid down and slept for two hours.

The homework that had to be finished was finished, and she's ready for another day.

Doctor's Appointment

We met with Jessica's doctor over the phone tonight. I'll try to give the shortened version.

Regarding her B-12 shots, Jessica said she didn't think they were helping, so he said she didn't have to get the shot, but to find another form of B-12. There is a non-prescription B-12 patch or a form that dissolves under your tongue.

We went over her labwork that was done a few weeks ago:

• She’s not anemic. Her kidney function is normal. Salts, proteins, and liver are all normal.
• Her Pregnenolone was up and was good.
• It looks like her thyroid is on the right track now.
• Her CBC white count was still a little low but better.
• Her Cortisol was low, and something he wanted to work on, so he's increasing her Cortisol to 3 a day instead of 2 a day. Cortisol helps stress management, the immune system, allergies, pain & stiffness, and helps stabilize blood sugars. Blood sugar is still low and Cortisol levels are still low. Increasing her Cortisol should help the blood sugar issue, as well as the appetite.
• Her cholesterol is still low, which most people would think is good, but it can be too low. Things to consider - Are you absorbing your food or are you eating enough? If you don’t eat enough then you don’t get enough nutrition. Jessica says she’s not eating much because she gets full too early. The doctor encouraged her to eat more. She may not be getting enough nutrients to make all the chemicals her body needs to run on. All your hormones are made from cholesterol, so if you have low cholesterol then you may not have enough to make your hormones with. The body can get in trouble if it doesn’t have enough stuff to run on.
• Her DHEA was a little on the low side but at her age, he doesn't want to mess with it. It's raised since the June labwork, so we are making progress.
• Aldosterone (re: OI) was just a tiny bit better, but her dizziness is better, so he's leaving that alone.

He said we could back down on her anti-viral dosage, which I'm taking as a good sign!

Regarding her headaches on the right side of her head, he is going to send a prescription for something to take for the pain. He mentioned that headaches can be caused by a hormone fluctuation. If the headaches end up being a long-term problem, then we can look at a preventative.

He also said it appears that we're doing the right things. Depending on how she’s doing, the next appointment will be in 2-3 months.

So, we keep on keeping on, and keep hoping for further improvement.

Weekend Recovery

Jessica was really tired today with a sore throat. She made it out of bed to grab breakfast and for a couple of trips to the bathroom. Otherwise, her meals have been brought up to her and she's stayed in bed all day, obviously missing both of her classes. She went back to sleep this morning and slept till 1:00, and was tired this afternoon and wanted to sleep more but couldn't. Matthew and I have been camped out in her room with her keeping her company tonight. As she perked up some, she wanted to play Playstation with him but "didn't want to move" so he brought the console in her room, and they're playing from the comfort of her bed now.

Evidently the weekend (slumber party) was too much, but she said it was worth it. There are some that believe she needs to prioritize and not do as much, so that she wouldn't have missed a day of school. Knowing that she doesn't get much "fun" time, I believe the occasional fun times, even if it's a little too much, are ok. Aren't they?

We got her lab work in the mail today, and I'll save my thoughts on that until after tomorrow's doctor's (telephone) appointment.

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!

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 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.

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 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!

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."

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.

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 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.

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.

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 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 -

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

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 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 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 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 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).

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.

Friday 1/30/09

Lots better today! Jessica made it through a past due orthodontist appointment and both of her classes!

And she seems ready to jump into the weekend. While she's being a teenager and weighing her weekend options (helping decorate with the youth group, going shopping with a friend, riding Mia, at least riding Mia...), I'm thinking this weekend would be a good weekend to lay low. Less weekend would mean more school week next week. There's got to be a balance somewhere to setting the much needed limits without interfering in too much of her fun. (I know it doesn't seem fair.) We're still figuring that one out - how to pace. I'm sure we'll go see Mia this weekend, but a shorter visit. And we have tickets to see a horse show (requested by Jessica of course) that should be very entertaining for all.

In the meantime... She's so much better today, and we're so glad for that!

Thursday 1/29/09

Jessica was tired today. She woke me up in the middle of the night saying she couldn't sleep and had a sore throat.

But she still tried to get ready for school, not wanting to miss another day, but not knowing if she would be able to make it or not. She made it to her first class. And then, as soon as the next one was starting, she texted me - "Come get me." She missed her second and last class of the day, and came home to nap the rest of the afternoon.

But tonight, she seems to be feeling better. I think we're getting through this virus/crash!

Wednesday 1/28/09

Jessica was still coughing today, but she's mainly really tired - and exhausted. Today was another day of spending all day in bed, and having all her meals brought up to her to eat in bed. She took a nice log nap this afternoon. While Steve is working late tonight, Matthew and I are piled up on her bed to keep her company.

Here's hoping that she's up to going back to school tomorrow.

Tuesday 1/27/09

Jessica stayed in bed all day - tired, coughing, etc. She missed her second day of school this week. She did manage to get her homework done, and has seemed perkier than yesterday. Hopefully, tomorrow will be even better.

Our ice/snow day that we were looking for last night, turned into mostly rain today. We're waiting to see what tonight brings, and the kids are hoping for a snow day tomorrow.

Monday 1/26/09

Jessica wasn't feeling good at all today. Her throat hurt "really really bad" and she couldn't stop coughing. She laid in bed all morning until her doctor's appointment. The doctor said, listening to her, she sounded like pnuemonia, but he took x-rays and didn't see any, so he's treating her for bronchitis. She took a 2-1/2 hour nap this afternoon, and is now doing some reading homework.

And we're waiting to see if we get ice tonight.

Sunday 1/25/09

Jessica hasn't felt very good at all today - sore throat, headache, really tired, still coughing, and just not feeling well. She's napped and laid around all day. She hasn't felt like getting her reading homework done - can't think and just too tired. She's gone to bed early.

The Week in Review

Jessica had a decent week. By Wednesday, she was tired, but still made it through her school day. But Thursday, she was really tired, didn't feel well, and felt like she was catching a cold. She missed school that day and stayed in bed or on the couch for most of the day. But Friday was ok to go to school and then a movie after school with a friend.

Today, Saturday, we went to the stables to work with and ride Mia. My niece went with us to give us some training tips (to try to avoid another fall). We were there for a couple of hours. She had a good ride, and Mia did well.

Tonight Jessica doesn't feel too good - tired, and has a cough that hurts in her chest. It seems that every now and then she gets cold symptoms that may not pan out to be a real cold. Why is that? Is it part of CFS? EBV? Or does it have anything to do with the micoplasma pneumoniae that she tested positive for in her last lab tests?

We're being couch potatoes tonight, watching the Miss America contest and rooting for Miss Arkansas.

Monday 1/19/09

Jessica seems to have made it through her big weekend with the youth group really well, and she's still wanting to go see Mia (our horse) today. There seems to be some good hope there in the fact that she handled all of that so well.

She did rest for most of the day today, and then we went for a very short visit at the stables.

The Weekend

The youth group at church was having a full weekend event where they were spending the night at different people's houses and having group time, worship, a carnival, a bonfire, pizza/arcade/lazer tag/etc., etc. We let Jessica go. She was supposed to call when she'd had enough to come home to rest, but she made it through the whole weekend! During the carnival, she and a friend sat it out inside the church, so she did take it easy when she needed to. She thought about calling several times, but didn't. While out for pizza, a friend asked her if she was ok, saying she looked like she was going to pass out. And, when tired, her lifegroup leader encouraged her to hold out till the end. She did call to say she wanted to stay, and had an awesome time. I'm glad - glad she held out. She needed the fun and the time with the girls.

The kids have a three day weekend this weekend (Martin Luther King Day on Monday), so she can rest up tomorrow.

Thursday 1/15/09

Jessica didn't feel well this morning. She was really tired, and her whole body aches, especially her back. I know her back is from being bucked off the horse yesterday, but I don't know if all of the body aches are to be attributed to the fall or CFS.

She made it to her first class, English, and while they were listening to the recorded reading of the book 1984, Jessica said she fell asleep with her head in her hands. I doubt that it was for long, and she doesn't think the teacher noticed. I had already planned to pick her up after English. So, she missed her 2nd class, and came home and slept for an hour and a half. After yesterday, she needed that nap to recuperate.

Wednesday 1/14/09

After Jessica turned her alarm off this morning and I turned it back on and tried to wake her again, then Steve went up for his turn to try to get her up and found her sitting up on the side of the bed. Success! She made it up at 6:30a.m. or so, and to her 8:00 standardized Algebra 2 test.

As it turned out, they put all four or five of the 504 Plan students in a room together. The test was a 3 hour test lasting until 11:00, but when she came out at 11:20, she said she still had 8 problems and they were all told to come back after lunch to finish. That is one of her provisions in the 504 Plan - that she's allowed double time on tests if needed. I was glad they remembered and allowed the extra time.

She then went to her other two classes, and made it through the day. A full school day! The first one since last spring. Her last class of the day, History, did have a substitute that said they weren't going to do anything, so Jessica finished her other homework and took a nap in class. I'm sure that little nap helped her make it through her big day too. Thanks to the subsitute!

So, that horseback ride that was put off on Monday became her victory ride today. In celebration of finishing Algebra 2 and the standardized End of Course test, I took her to the stables. She was still feeling good enough. Unfortunately that victory ride turned into a tumble, as Mia (our horse) bucked Jessica off and flat on her back. I don't know enough about horses, but the stable owner suggested that it's because she doesn't get enough playtime with us or worked enough. So, Jessica and Mia ended up getting about a 45 minute lesson out of the deal, which ended in a calm ride around the arena.

It was a full day, and we were so thankful that Jessica was feeling well enough to handle it all. It's a relief to have it behind her.

Tuesday 1/13/09

Jessica went to her 2 afternoon classes today, and sent me a text message between classes saying "I'm tired." Unfortunately I saw the message too late, so she made it through the rest of the school day.

Tonight, she took her online Algebra 2 semester exam, making a 94%! She's finished the course! It started on 10/9/08 with a couple of weeks off during her tonsillectomy, so it's been a crash course. And it's finally over!

Tomorrow is the standardized 3 hour End of Course test that starts at 8:00a.m. It's a required test, and the school didn't accept our request for provisions for later in the day. It will be a full day for her, but she will be happy to have it behind her. We're hoping we can even wake her up that early. So, it's early to bed...

Monday 1/12/09

Jessica woke up slow, hitting the snooze alarm over and over, but then did ok through the day. Through both classes at school, finishing her homework before she got home. It would've been nice to have gone horseback riding after school, but we have to pace. At home she studied some more Algebra - for her upcoming semester exam and standardized 3 hour test - all this week. It's a hard week; it's been a rough course with a lot of hours put into it to get it done, but it's almost over. She's tired of Algebra.

It would be nice to be a normal healthy teenager. Today was an emotional day...

Thursday 1/8/08

Jessica went to school at 11:00a.m. to go to an Algebra End of Course review. When I picked her up 30 minutes later for lunch and to drive her across campus to her first class of the day, she asked to be picked up after that class. She was tired today. She missed her first class of the semester, but luckily it's U.S. History and one that she could stand to miss. She came home (with her legs hurting), went to bed, and slept soundly for 2 hours. She's dragging still, but has English homework - a short story to write.

Wednesday 1/7/09

Jessica is still working on her online Algebra 2 course in the mornings with my dad. Since she sleeps in later, my dad gets there at 9:30 or 10:00, so that doesn't give them long to work. They're on the last chapter, but being the online course that it is, it takes longer to get through it. Without pushing too hard, it could probably take them another week and a half to finish. But we came across a stumbling block today (or 2 or 3). While talking with Jessica's school counselor, she said Jessica had to finish her class before she can take the national standardized End of Course (EOC) test next week on the 15th. If she hasn't finished, she'll have to take the next one in May. We, of course, would prefer it now while it's fresher on her mind. So, morning-evening-Saturday-Sunday-every chance there is, she'll be doing Algebra 2. And, she will finish it and take the EOC next Thursday.

The EOC test is during first and second block next Thursday, which means it starts at 8:00a.m. and lasts during 2 90 minute sessions. That's going to be tough! Jessica usually cannot be woken up at all that early in the morning. And also, that's going to be a long day.

I got an email from Jessica's English teacher today. Steve and I made the decision earlier in the school year to take Jessica out of pre-ap (advanced placement) classes to lighten her workload and help her get through this. Her English teacher emailed saying she understood that decision, but was afraid Jessica will be bored in her class. I contacted her school counselor who advised to leave it as is this semester, and couldn't find a pre-ap class open in the afternoon anyway. These decisions are so hard!

Jessica was somewhat tired today, but worked on Algebra 2 in the morning and then again in the evening (via phone call) with my dad, getting through 2 more quizzes.

Tuesday 1/6/09

One year ago today is when Jessica got sick. That was on the last Sunday of the Christmas holidays before school started back. She just didn't feel good. Later that week we found out she had mono. A few weeks later we found out it was EBV. And a few months later we got the diagnosis of CFS. It's been a year - a long year. But we give thanks to friends who gave support, encouragement, information and advice or a shoulder to cry on, thanks to parents that helped more than anything and were always there, and thanks to doctors doing what they can to guide us and help build up her health. We've learned and grown, and most importantly we've seen a lot of improvement since last spring. And Jessica has been a trooper through it all! We look forward to more improvement and better health.

Today was day two at school. Jessica was a little tired and her back was hurting when I picked her up from school. We started her B-12 shots this afternoon and hoping that will help some. No homework yet, so she could relax for the rest of the evening.

First Day Back

Today was Jessica's first day (in months) back to school, and it didn't go as well as we'd hoped for. She woke up sick at her stomach, and we didn't know if she'd make it to class or not. We left for class right before noon (with icicles hanging from the trees). When I picked her up at 3:00, after both of her classes, she asked to be taken home before I picked up the boys, because she still wasn't feeling well, and with a headache too. She also said she felt like she was about to pass out while walking across campus to her second class - with very little time to get there. Hopefully if it had been a day when she feeling better, that walk wouldn't be as bad. She's a little tired tonight, but holding up ok.

School Starts Tomorrow!

Jessica starts back to school tomorrow - going just to the afternoon classes. Her 2 classes are across campus from one another, so she will have a ways to walk.

We're hoping for the best and praying it goes much better this semester.

The Weekend

Jessica was feeling "much better" from her cold symptoms by Saturday evening. She worked on Algebra 2 most all weekend.

Friday 1/2/09

Jessica has a full blown cold and didn't feel well at all today, with ears and throat hurting, so I took her to the doctor. We saw the nurse practitioner who said there was fluid on her ears but not infected yet and that her throat looked bad. We're relaxing in front of the tv tonight, and hoping she'll feel better quickly.

She and my dad did a little Algebra today, but not as much, since she wasn't feeling well. They probably have a week and a half's worth left, and school starts Monday.

A New Year

Jessica wanted to go riding today. I knew that she wouldn't have another chance soon since she's planning to have her nose to the grindstone working diligently on Algebra for the next 3 days trying to get through with as much as possible before the new semester starts on Monday. So, she and Steve went out to the stables. She worked on what her instructor had gone over with her earlier in the week, and she rode around in the pasture across the road. She rode until she was tired and told Steve that she had had enough and was ready to go.

Steve suggested dinner out again tonight to my favorite restuarant, but the timing wasn't good. We had a quiet evening at home eating our ham and black-eyed peas and then finished playing our game of Electronic Monopoly.

Jessica seems to be coming down with a cold, and by evening she was "feeling horrible." She's gone to bed early.

It's the first day of 2009. A clean slate. A fresh start. We're looking ahead instead of looking behind. It's a new year with new possibilites and new hope. May 2009 be a good year! Happy New Year!