Friday, September 25, 2009

ABC News Story on CFS

Feeling Chronically Fatigued?

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Thursday, September 17, 2009

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.

Monday, September 14, 2009

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.

Friday, September 11, 2009

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.

Wednesday, September 9, 2009

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!

Tuesday, September 8, 2009

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.