Thursday 8/21/08

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

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

Wednesday 8/20/08

Today Jessica felt better during the day.

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

Tuesday 8/19/08

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

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

Monday 8/18/08 - First Day of School

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

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

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

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

The Misunderstood Illness

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

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

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

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

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

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

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

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

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

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

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

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

Thoughts

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

Saturday 8/16/08

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

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

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

Friday 8/15/08

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

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

Thursday 8/14/08

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

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

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

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

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

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

Wednesday 8/13/08

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

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

Tuesday 8/12/08

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

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

Monday 8/11/08

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

Week of August 2nd - August 8th

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

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

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

Thursday 7/31/08

We met with the school counselor and then the Special Education Department today, and it went better than I could've hoped for! Her counselor is great! And she sympathized, and even hugged me when we left.

They basically said they'd do whatever we needed! The counselor suggested that we cut Jessica's class schedule for the fall back from 4 1-1/2 hour classes to just 2 classes. I didn't know that was an option. She showed us how that wouldn't get us behind (if it doesn't continue like that semester after semester of course). We took her out of pre-ap just for this semester, and she's going to take Algebra II, and U.S. History. The counselor handpicked her teachers, and made them afternoon classes. If it turns out that she can't do them both, then she can do U.S. History at home online or with a homebound teacher. They're going to set up a meeting next week with the 504 Coordinator, the counselor and us to work out her 504 (Disability) Plan. She said an extra set of textbooks for home wouldn't be a problem, they'd give us extra parent excuses for absences, and they could put in there for the teacher to give Jessica the teacher's review notes. Jessica's not happy with us for taking her out of pre-ap, because it makes her feel less smart, but she likes that she doesn't have to work to get to school and can get there after lunch.

Jessica was so-so today, a little tired, kind of draggy. I guess she's making up for the shopping. We had to go to an eye doctor's appointment today, since she's had trouble seeing the writing at the front of the classroom. So, she'll be getting glasses/contacts soon.

Wednesday 7/30/08

Jessica was not too bad today. I don't think she got a big boost from yesterday's IV, but instead today was more like one of her "good days." It's hard for her to go up our stairs sometimes, and she was holding onto me to help her up this afternoon.

She did go to Old Navy today with my parents to finish out her school clothes wardrobe. Just one store. And she and Matthew went with me to see Mia, to soak her foot. We got a call from the stable owner while we were in Dallas that her foot had an abcess. It seems to be doing better today, and she's walking on that foot better now.

Jessica's a little tired tonight.

Tuesday 7/29/08

CFS sure is multi-systemic. There's several things going on in her body, but the doctor did give some hope, though it may not be soon. I'll try to give you the short version of the doctor's visit.

This receipt shows a diagnosis of Adrenal Insufficiency, Chronic Fatigue Syndrome, Endocrine/Hormone Disorder, Fibromyositis, Hypothyroidism, Pituitary Insufficiency, Viral Infection, and Bacterial Infections. Her blood work from last time showed:

• She was on the low end of normal in her Natural Killer Cells (part of the immune system that rejects tumors and cells infected by viruses.) .
• Her white blood cell count was low. It was 4.3, and should be above 7. Her absolute lymphocytes were 1367 and should be above 2000.
• She was slightly hypoglycemic with her hemoglobin level at 5.1.
• Her cholesterol level was low, at a level of 123, where it should be around 150. He said it could be that her body isn't absorbing like it should.
• Her Aldosterone level was 5, and should be at 20. This shows that she has OI (orthostatic hypotension or orthostatic intolerance), and why she is on the Florinef.
• Her DHEA Sulfate level was low at 25, and should be closer to 200 for her age. This is a hormone, her memory hormone - that explains some things! It strengthens muscles, stimulates, immunity, increases energy, fights depression and anxiety, and enhances memory. He has now given her a supplement for this.
• Her thyroid T4 level was low (1.0 and should be 1.5), her T3 level was low (316 and should be greater than 360) and Reverse T3 was off (should've been 1/3 of her Free T3 (which was 307) but was 210.
• Her magnesium was low at 2.6 and should have been 4.0-6.4. This effects the muscles. We're to get some magnesium at GNC. I've been told this could also help her sleep better!
• Her Free and Total Cortisol level was low, at 7 and should be 17. And her Free Cortisol level was low at .15 and should be 1.5. But he already had her started on this.
• Her Pregnenolone was low at 30 when it should be 130-230. Again, this has to do with memory!
• Her Vitamin B12 was low at 512 when it should be greater than 700. She's on multi-vitamins, but he talked about getting a B12 that goes under her tongue.
• Otherwise, her Sed rate was good, mercury, lead, sodium, potassium, iron, and all the many other things they checked for seemed to be within range.

All these different things (thyroid, cholesterol, pregnenolone, DHEA, Cortisol, Progerterone, Aldosterone, Tertosterone, Estradol) all work together, so when one is not working, it messes something else up. Then starts the cycle. But she's already on the thyroid medicine, Cortisol, Florinef for the OI, and other things to boost her system etc., so he said "We're on the right track." He did say that it's not a quick fix. The minimum time frame to feel better would be six months, or it could be 2 years. He did say that with her being a child, she has a good chance of recovering. He also seemed to think that she'd be able to get off of all her pills except for her anti-virals at that point. (It's not something that ever goes away, but instead attaches to your DNA.)

We asked him about her diet. She likes chicken nuggets, and doesn't like fruits or many veggies. (Well, when talking about veggies, she told him that she likes potatoes! Ha!) He suggested a macrobiotic diet with whole foods when possible.

We talked about school, and what to do there. He said we'd just have to see what she's able to do, and suggested a lighter load this semester. He said for us to tell him whatever we needed in the school note (i.e. 1/2 day school, an extra set of textbooks for home, etc.) and he'd write it.

She got an IV suggested for energy, which contained ascorbic acid, magnesium chloride, calcium gluconate, B-complex, B12, D-Ribose, etc. We thought it would give her a boost. But after it started, her arm was hurting and she started shivering(chills), eyes burning, nauseas stomach (I thought she was going to throw up), and ended up with headache. She felt horrible. It was horrible. They said that was normal in some people, and she may feel bad tonight, but then she should feel better. The nurse said it would be worth it, but i don't think we want to do that again! We let her rest in their recliners for about 40 minutes (until they were closing) before we got in the car to head back home.

We did get to take a "lunch break" from the doctor's office to go to the Galleria Mall, which was just about 2 miles from the clinic. Jessica can push herself to go shopping! And we got a few school clothes and looked around until she was really tired!

Monday 7/28/08

Jessica's day started off slow, kind of like yesterday, but she perked up a little as it went on. We even made a quick run to Hobby Lobby for her to get some fabric for some sewing projects. I could tell she was tired and it was hard on her, but it was also something for her to get excited about doing, which is good.

We got a call from the Dallas clinic confirming Jessica's doctor's appointment tomorrow. I was a little puzzled, as I told her she'd called last week to cancel it, but she said she cancelled our August appointment. So, we're making a mad dash to Dallas this afternoon.

Sunday 7/27/08

Jessica was pretty tired today! When I asked her if she wanted to go to the store with me to try to find her a white noise machine, she said she wasn't dressed for it and didn't feel like getting dressed. IOW she was too tired and wasn't up to it.

She hasn't really done anything lately. And we did increase the Florinef to just what our prescription says - .1mg. So....?

If today was a school day, she probably could've pushed herself to go, but she wouldn't have felt good the next day.

Saturday 7/26/08

A pretty good day. We just hung around the house, watched movies, etc. Jessica was a little tired, and had a little headache, but seemed to be pretty good today for the most part.

Friday 7/25/08

Today was better. Jessica had a little headache, and was a little tired, but better. Though she didn't sleep last night. She was home all day today taking it easy.

She read a chapter in her summer homework book. It seems to be slow going, as she reads five minutes and can't keep her concentration.

Matthew got to go to the water park/amusement park today in place of yesterday! Along with going fishing and catching 2 fish. He and Steve had a nice father / son day.