An Update

Jessica is going to college! She started her first year of college this fall, and she's loving it! And seems to be doing well. (Would she tell me if she wasn’t?) She's going to school close to home, and comes home often (which I'm very thankful for!). She came home this past week for fall break. I quizzed her again about CFS –

I asked her if she has any symptoms, and she said no. She did have a sore throat a few weeks ago, and I think that was due to some stress at the time. She actually said she had a sore throat last week. And she has had a few headaches lately.
I asked her if she limits herself, and she said no…. if she paces herself, and she said no… if she takes naps, and she said no (though she took one Sunday before fall break, several during fall break, one yesterday, one today...). She has rearranged her sleep schedule – because college kids stay up late! – and she stays up late and wakes up later in the morning (to roll out of bed and go to her 9:30 or 10:00 classes).

She stays busy with schoolwork and activities. I worry that she’s too involved and is doing too much, but so far it seems that she’s doing ok. She goes to 2 or 3 different collegiate ministries during the week nights. She’s on the Student Activities Board, but they haven’t been doing much. She's on the pep club. And of course she’s hanging out with friends. She’s even been running some, and just started the Couch to 5K program. Does she still have CFS?

She does still take all her medications. And my husband and I request that she bring her pills back home with her when she comes so that we can fill up the daily pill cases to help ensure that she is taking them. She’s doing pretty good with it. When we went to her doctor’s appointment with Dr. S in August, he encouraged her to continue taking her medicine even when she feels good because it would be harder to get her back to that point if she quit taking her medicine and had a bad crash.

She just got her midterm grades, and she's making A’s and B’s. So she’s studying too!

So, there is hope! Over 3-1/2 years ago, she could barely get out of bed or off the couch and wasn't able to get to school. Right now she's in college, living a fairly normal life, and doing well.

A Job?

Jessica just got hired for her very first "real" job - a waitressing job. She originally went because she heard that the restaurant was in need of a hostess. Though that position had been filled, a waitressing position was open.

Jessica believes she can do it. Being a mom, I have concerns. Will it be too much standing? Or too much running around? Or what about the stress of unhappy customers and trying to get everything done to please? I guess we will find out. She reminds me often that she's better. Which she is - better - but this illness doesn't go away. She is determined that she can do this job, and I'm not going to squash her hopes. The job will start with just a few hours, which will be good. The experience of having a real job and learning to save and use her own money will be good. She, of course, wants to be "normal." So we're going to try this....

The Golden Girls - Dorothy's lecture to Dr. Budd about CFS

Here is one moment from a Golden Girls show that deals with Chronic Fatigue Syndrome (CFS). You can watch the whole show in parts on YouTube - "The Golden Girls - Sick and Tired." It was a 2 part show that aired in September 1989 (episodes 103 & 104 in season 5). It touches on issues that are still true today which, sadly, includes a lack of understanding and awareness. We need to work hard to raise the awareness.

EDIT: Sorry - YouTube video was removed.

Spring Break

Spring break was last week, and Jessica had a really good spring break - almost like a "normal" teenager! ... At least until the end of the week.

Spring Break consisted of:

• Friday - picking up her brother, Matthew, from school and surprising him by taking him to a movie - Diary of a Wimpy Kid.
• Saturday - went to see her horse, Mia (who hasn't gotten much attention this last year), and then to a friend's house to hang out.
• Sunday - church, prom dress shopping, and then to youth church.
• Monday - prom dress shopping (found the dress this time!) with me, and go-cart riding with her brother, Matthew.
• Tuesday - Ok, this was a big test this day. She went to Pinnacle Mountain and hiked up to the top with a few friends. I, being a mom, was concerned about how she would do or how she'd be in a couple of days, but she made it to the top without a problem and, as Jessica told me, she was "doing better" and was "fine."
• Wednesday - lunch and (Alice in Wonderland) movie day with some of the youth from church. And then she went by the stables and rode her horse.
• Thursday - Since it was raining, the mission project got moved indoors and Jessica helped clean up and paint the student building.
• Friday - was a mom and kids day! :) Jessica and Matthew and I took a McDonalds picnic lunch to the park. Matthew played frisbee with a friend while Jessica and I talked and soaked up some sun. Then we went to see How to Train a Dragon at the movies. It was a great day! And then Jessica ended up at a friend's house and spent the night out.
• Saturday - helped the stable owners walk a colicy horse, visited a friend at her stables, washed her car, and ended the day curled up on the couch (yes, I saw the sign of what was to come) watching The Pursuit of Happiness (a great movie!) with her brother.

And then there's Sunday ...
Sunday, I went to wake Jessica up for breakfast before getting ready for church. She didn't feel good (sore throat and tired). She didn't want to wake up, but she was hungry and asked for breakfast in bed, so I brought it up on a tray. She evidently realized that it was Palm Sunday and she would be missing communion, and decided that she was getting out of bed for that. We all made it to church. She napped that afternoon before making it back for youth services.

Monday she was tired and had a sore throat, but made it through school ok.

Tuesday she couldn't get out of bed for school. She was tired and had a sore throat and was basically unresponsive when we tried to wake her up. So, she stayed home and slept. But made it up and to school before school was halfway over!

Wednesday was back to normal.

So, Jessica got to enjoy being a 16 year old, a good spring break, and the crash was limited.

It's also nice that it's a short 3-day school week this week!

The Happiness Award

I'm happy and honored to report that I was awarded The Happiness Award. My friend, Sue Jackson, of Learning to Live With CFS passed this award on to me a couple of days ago. Check out her very informative, encouraging and excellent blog with all kinds of tidbits throughout. So, thank you Sue!



Now for my 10 (or so) things that make me happy:

• The grace and mercy of my Lord and Savior
• My family - I am a very lucky woman to have such a wonderful husband and such good kids. I love them so!
• The laughter of my kids, and knowing that they are healthy and happy.
• A Starbucks coffee date with my husband.
• Watching movies with my family.
• Friendships and quality time with people I love and love me in return. You know the five love languages? - Mine is definitely Quality Time Together!
• Sunshine! - Now that spring's practically here, it's really good to see!
• The chirping of the birds - Again, I can tell it's spring.
• Springtime! And the flowers blooming.
• Our pets, especially the dogs and their unconditional love and tail-wagging.
• The water - i.e. the lake or the ocean/beach
• Mountain views / nature
• Learning this past year that I can be a runner and reach the finish line
• Chocolate
  
• Christmas!

There are many bloggers that I could and should pass this award on to including: all those that I follow, Sue at Learning to Live With CFS, Lori at Living Chronically (which is about her daughter of the same age and name as mine) which is subtitled as "A Story of Hope" and What's After 29?,
the Gracerunner Journal (a running blog with a Christian message), and my daughter who is a tremendous inspiration.

Spoke Too Soon

Jessica spent the day in bed yesterday not feeling well. That's what I get for bragging about how well she was doing!

Jessica did so well this weekend. The youth retreat, rehearsals, Dinner Theater, church Sunday, then shopping with friends even... And still was ok to go to school, but ended up with a bad headache Monday night. So, I was thinking she was doing good! But it hit yesterday (Wednesday). She was't even getting out of bed. She was weak, her throat hurt, and she kept coughing. She slept all morning. I brought lunch up to her, and she laid back down again. Jessica slept till after 3:00 but was finally upright early in the evening and made it downstairs to "her chair" to join us and watch tv. Even though she crashed, she said the weekend was worth it!

Today she's back in school and doing better.

Results of A Busy Busy Week

Jessica held up very well through her busy busy week. It was such a busy week and active week. Weekend before last was the youth retreat; then last Thursday and Friday nights were Dinner Theater rehearsals, which started again Saturday at noon and then the Dinner Theater that night. And one of her skits was an aerobic skit!! And after that, Sunday she went to church with us, then to see my grandmother for her 95th birthday, and then she went out shopping with friends!! She's held up so well that it makes me think she's almost normal. Is she well?

Jessica was tired Monday morning, and I asked her if it was daylight savings tired or other, and she said she didn't think it was daylight savings time. So I asked... "How's your throat?"... to which she replied that it actually was hurting a little bit. (Her throat always hurts when she gets tired or crashes.) She made it through the day ok, but ended up with a bad headache. Then tonight (Tuesday) when I asked her how she was, she said "ehhh" [translation: so-so] - She said she's been coughing.

Though I may want her to be well, and especially when she's going through such a good streak, but I don't have anything to complain about right now. She's doing ok!

An Average Week with a Busy One on the Horizon

Jessica had one day last week that she had a bad headache and stayed home for half the day. Sunday night of this week she woke me up in the middle of the night with leg pains. I took her some ibuprofen and rubbed her leg for half an hour. Tuesday she texted me at 2:15pm saying she didn't feel good - really tired and her ear was hurting (not sure what was going on with her ear). I called and checked her out of school early that day. She had slept in her 3rd block class and during LUNCH! And then came home and slept for 2-1/2 hours. She seems to have held up ok since then though.

This next week plus is going to be the test, as she's got a youth retreat this weekend and a dinner theater the next weekend (which will include rehearsals during the three days before). But she's going to be having fun if she can make it through it all!

Still Shaky

Jessica wasn't feeling well yesterday, and stayed in bed all day until dinner. She was tired, but also she was stopped up and sneezing, so she thinks it's a "normal" sickness. I don't think so. I think it's from over-doing.

She signed up to act in the Dinner Theater at church that our youth is putting on. They had rehearsal last weekend including a lock-in rehearsal Friday night. And then during the snow, she and Matthew decided to walk down to Sonic for lunch one day, and realized it was a little longer and harder walk than they imagined it to be trudging through the slush and snow with it raining on them.
So - she's been pushing her limits.

We had a talk tonight. The AP classes are hard. It seems that she was homebound for a year and a half, and then went back to school and saw what all she was missing... We had tears tonight, and she said she's "tired of it." Basically she's tired of being sick and "not being able to do anything." I actually have been feeling like I'm going through the empty nest syndrome early because I feel like she's been doing quite a bit now that she can drive. But she mentioned an example of - when she went skating with her friends I told her to be home earlier than her friends (9:30), and she can't stay up as late as her friends, and she wants to dance, etc... In other words, she can't do things like a "normal" teenager. I had been seeing this in her - that she's trying to forget that she has CFS and trying to be normal. And pushing her limits in the process. She said she would "push through it," but I'm not sure what that means. Any suggestions for moving on, dealing with it, and accepting it?
Though I think it was better just from venting.

The Balancing Act

Jessica is a fun-loving friend-to-all person. Beautiful inside and out, and wanting to be there for her friends. She has many friends, which leads to many opportunities for social activities. She doesn't like to stay inside all the time, but that could be partly due to the fact that she had to stay in all the time from January 2008 until the summer of 2009 - because of her illness. But, now that she's feeling better than she was and now that she's 16 and driving... There's the issue of - how do we balance having fun with not doing too much to end up in a crash.

Jessica still has Chronic Fatigue Syndrome (CFS) and still needs to pace her activities, but wants to be a normal teenager. As her mom, I'm feeling like I need to put some limits on the weekend activities. So, therein lies the battle. And it's hard. Very hard. How do you balance being a teenager (or being a mom of a TwCFS) and pacing life because of CFS?

Jessica evidently couldn't go to sleep last night and didn't sleep well. This morning Steve couldn't get her to budge at all. She didn't wake up. And he figured if she hadn't slept, then she probably needed to sleep in, but then there was that thought about the 3 days a semester she doesn't need to miss to be able to skip semester exams, and she's missed one so far. So at almost 7:00a.m. I tried again, and when I got her alert enough, she didn't seem sure that she felt like getting up, but she managed to get up and get there on time. She texted me later and said she felt "so-so." She came home tired still.

We have ice or snow in the forecast tonight. It would be kind of nice if we did have a snow day tomorrow so she can sleep in!

Results of the Weekend

On my last post, I said I guess we'll find out if the long evening of ice skating was a good decision...

Monday morning of this week, we could not get Jessica out of bed. She didn't budge. Her throat hurt, head hurt, her head was "stuffy," and she was really tired. She stayed in bed almost all day. I took her lunch up to her, and she ate in bed. She finally got up around 3:30; her head had quit hurting, but her throat still hurt and she was still tired. It was definitely a crash. I believe this was due to the fun night of ice skating, but also due in part to some stress Sunday night caused by teenage drama.

Tuesday she still had a sore throat and tired, but was back at school. Wednesday she wasn't too bad, and even made it to dinner with her lifegroup leader and to church that night, after promising me that she would have a calm mostly-at-home weekend the next weekend. The movie Julie & Julia is supposed to be coming in the mail today, so we can have a relaxing movie night tonight!

Skating Through This

We had a normal Saturday today. We all straightened up the house a little before my parents came over. Jessica stayed home and worked on a school project while Steve and Matthew and I went grocery shopping and to Game Stop (that's why Matthew went along).

Jessica had asked what we were going to do tonight. Lately she hasn't wanted to stay around the house. Maybe it's making up for being around the house so much over the past two years. (Wow - It's been 2 years this past week!) But mostly I think it's being a teenager and being able to drive now. I actually miss time with her, but that's just me getting used to having a 16 year old.

So, tonight on cue, she came down asking if she could get some friends from church together and go to the ice skating rink. They met there at 6:00, and I told her to be home by 9:00. She called at 8:30 saying they were having so much fun (and I could hear in her voice how much fun they really were having) and could she stay for a little long - maybe till 9:00? I love that she has so many friends now, is able to get out and be with friends, and the fact that she was having fun. So, as it turned out she stayed till 9:30. I guess we'll see if that was a good decision in a couple of days.

This skating party got me thinking about Matthew's birthday skating party in July of 2008, 7 months after Jessica got sick. She did put on roller skates that day and I think she went around the rink once, but that was all. She held out for a couple of hours, and then she and I had to leave before he was through having as much fun as he could with his friends.

I am so glad that she is able to do things now, can be more active, have more of a life, and enjoy being with her friends. We've come a long ways since then, and we are thankful!

School Started Back

School started back today. Jessica is going to school full time with 3 AP classes. She's taking AP English, AP World History, AP Environmental Science, and Orientation to Teaching. The three AP classes could be hard, as they are supposed to be concurrent credit for college. This semester might need a little more focus. We'll see how it goes.

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?

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