How’s that for a greeting? This week is beginning on a busy note.
Then again, doesn’t it always?
Why the picture of Gossip Girl? Read on, Dearie…
We are down to our final two weeks of school. Jessie went in this morning for a biology end-of-grade test, which she happily reports was easy. This afternoon she will be going in for a lit test on “The Kite Runner”, reportedly, the most depressing book she’s ever read. Then she will be taking another test for one of her online classes.
I must say that so far she’s holding up far better than Mom, who woke up at 1:00 in a panic that Jes was awake and still studying. The only one awake at 1:00 was Mom.
This week’s dilemma: What to do when you’re so busy you can’t watch your favorite shows? (Gossip Girl season FINALE – we’re talking about Jessie here, American Idol FINALE? Oh PULEEZE let it be Chris!) Mom’s always creatively correct solution is to DVR them all and look forward to watching them in two weeks. This was met with a shocked, “Are you crazy?!?!?” Hmm…
This shouldn’t come as much of a surprise, but I must confess that Jessie’s words yesterday were actually mine. Shocker, huh?
I did show the post to her for approval and do you want to know what kind of response I received? As she proceeded to read, I heard a few chuckles, then an outright laugh at the “idiots” part. Apparently, it’s okay to call both parents and brother idiots. Yes, she does text under the table. I got only one objection, “I do NOT text that much!”
In response, I’ll admit one more thing. As she stated this, she had a little knowing grin on her face. Oh yeah, mom nailed it.
Jessie is working like a fiend. I stand close by, driving her nuts and saying, “Is there anything I can do?” As if…
We are currently down to two weeks of school remaining.
Brief example of typical day (In Jessie’s words):
Wake up, eat breakfast and begin to study. Work on papers and projects due. Mom is standing by me, driving me CRAZY! Break to prepare my lunch. Stop to text. Refuse mom’s offer to prepare my lunch. I’d end up with steamed broccoli and salad. I take lunch to computer and resume work. Stop to text. Head into school to take two make-up tests. Mom picks me up. Text while mom is talking about something. Come home. Study. Hold on…friend keeps texting me. Email biology project to teacher. Done with daily requirements. Break to text. Wait. Receive email that the english paper was due today. It is 4:00 and teacher tells me that IF I email it to her by midnight, she’ll only take off 10 points. YIKES. Text this to a friend. Mom asks me about something else. What? Would I like a smoothie??? Is she crazy? I don’t have time for a smoothie. Text friend to complain. Finally finish paper and email it to teacher. Stop to text. Parents are forcing me to actually sit down at the table and have dinner with them. Are they crazy? I don’t have time for chit-chat. (They don’t know that I text under the table!) Okay, chit-chat was not so bad. I got to laugh at my brother, mother and dad. They’re such idiots. Okay, back to the computer, but before that, I need to text. Work on drama project that’s due on Monday. I’m feeling encouraged. Stop to text friend before I go to bed.
I have been a slacker now for almost a month! Posts have been few and far between, which is a no-no in blogland. This is the busy season for any chronically ill teenager trying to play catch-up and finish the school year. For the parent of a chronically ill child, the road is hot between the school and doctor’s appointments. Jessie is plugging away with Hamlet, Algebra 2, Biology, Drama, Spanish 2 and US History with her usual insistence that everything will be fine. (Shouldn’t this scenario be the other way around?)
We had an appointment yesterday for results from the sleep study. Jessie had an end-of-grade test, so I went alone. Long story short, she woke up 18 times during the night of her study and never was able to fall into a deep sleep (REM). We needed a doctor to tell us this? Jessie is also a mild snorer. (Good thing she doesn’t bother reading this blog. She’d kill me for writing that.) She didn’t have any other issues like restless legs or apnea. The doctor wrote her a prescription for Flonase to clear her up a bit at night to see if that helps. If not, we will try a little higher dose of Melatonin. If THAT doesn’t help, they will just have to give her something else to help with the sleep. I don’t know why, that all of a sudden in October, the Pamelor just quit doing it’s job.
Other than that, things are quiet around here. No more doctor’s appointments for the week. I have cleared the schedule through the end of the month allowing for “the crunch.” We were supposed to get the labs done for gluten testing, but we’re holding that off as well. Jes is still happily consuming all things gluten without any stomach problems.
I’ve lost track of the days and am too lazy to figure out when Jessie began eating gluten. At any rate, she has yet to see a reaction, which is wonderful. I think we have the lab work done next week. If it’s negative for Celiac, then they are probably going to do another endoscopy to make sure everything is okay. You can get false negatives with the blood work and the final result will be when they have a peek at her intestine to see if there is any damage.
I am HOPING that the sleep pattern gets a little better and holds out until the end of May because the school crunch as begun. Jessie felt pretty bad yesterday, but went to school in the afternoon to take two tests. It will be like that every day from here on out. Great way to work on that stress level, huh?
Today I (we) have Jessie’s 504 meeting at school which should be interesting since she’s had such a bad semester. I still haven’t dealt with the recommendation of regular-level classes for the fall. I was always under the impression that the teachers make their recommendations, but the parents can overrule. It’s been told to me that they need to see Jessie in school full-time in the fall to allow her into the honors classes. (mostly “A’s” a a couple of “B’s”. nothing ever lower, even on homebound) According to my research, we’re getting dangerously close to discrimination and I don’t want to have to result to threats. I would be okay going along with their suggestions, except for the fact that classes are many times full at the beginning of a semester, meaning she wouldn’t be able to get in. Today’s 504 meeting won’t cover that topic. It will cover any accommodations that will be needed for school.
My car goes to the shop this morning and I’ll drive a rental for a couple of weeks. It’s a relief because I’m beginning to hear strange noises when I drive.
I may be taking a “roadtrip” with Jeff on Wednesday and Thursday, but I’m still on the fence. He has a meeting in Charlotte Wednesday afternoon, then will head to Roanoke, VA for the night with meetings on Thursday. Then he’ll drive back to Georgia (7 hours) on Thursday afternoon, putting us back at around 9:00. The kids are urging me to go. I have to admit, it would be nice to see my buddies in Roanoke for a few hours on Thursday. Plus the location of his meeting in Charlotte is across the street from a great mall. I think I could “suffer” through a few forced hours in Southpark! Finally, he’ll be staying at Hotel Roanoke, which is a neat hotel in downtown Roanoke. Hmm. My only concern is the kids. Jessie has to stay on track, which she assures me she’ll do. I can picture them now eating candy bars, popcorn and soda for dinner on Wednesday night. Sheesh. It’s tempting, all the same.
Have a good day.
Roanoke Girls, Jes in the middle
The week ended on a good note. Jes went to school yesterday for two classes and felt good afterward. She says that she can tell that her body is pulling out of this relapse because when she gets tired, it’s more of a normal tired and she feels better after resting up a bit. I sure hope that she’s right. It sure was a long seven month relapse.
We’re heading into spring break now. I’m not sure what next week will hold for us. Jeff has to travel back to our “hometown” of Roanoke, Virginia for a few days and Jessie has been hitting us with a raging campaign to go along to see her friends. We said earlier (in December) that she wouldn’t get another trip until summer because she went during Christmas break and felt horrible after using little common sense and throwing all caution to the wind. Honestly, she’s 16. How much common sense is she supposed to have when she gets to see her peeps for the first time in four months? Obviously, I’m sitting on the fence with this one. I’m the weak one who hates saying no. Jeff on the other hand is the tower of strength with this one and is staying firm in his decision. The next several days will be interesting as Jessie continues to run a pretty strong campaign! So far she’s written two full page letters to her dad making every conceivable promise under the sun. I just sit back with this one out of my hands and watch to see if he caves.
I understand his point fully and will support his decision. As for Jessie, I sympathize with her. She’s been miserable sick for all these months and wants to go back “home”. She’s on spring break, they will be in school during the day and she can sleep in and rest. See, I am truly the weak one in the family. There’s always one. The kids know who to appeal to.
Oh well, we’ll see how it progresses.
Sophie at the Studio
I’ve put a picture of our dog, Sophie, standing outside of my studio at our home in Virginia. The studio was in the top part of a detached garage on the side of a hill. Our house was like a cabin in the mountains. Actually, it WAS a cabin in the mountains. I loved it dearly. Not fancy, but unique.
That’s what we like to say around the house. My husband gets excited about Blue Jean Friday. Although, if I look a little deeper it’s probably excitement about the impending weekend rather than the fact that he gets to wear his jeans. In addition, the sun is supposed to show up for Blue Jean Friday. YEAH!
Yesterday was a good day. Jessie went to school around mid-day, then stayed afterward to play catch-up. In all, she was there from about 1:30 until 4:45 – a good day indeed. The best thing is that she didn’t feel the exhaustion afterward. In fact, she was in her room doing pilates when I went to bed last night.
We’ll see how she fares upon waking, but the plan is to head back into school this morning for a few hours. Next week is spring break and I’m thinking that, if we’re lucky, the following week will get us back to semi-normal/normal. Maybe the medicine is completely into her system and working properly. Whew. It’s been a LONG seven months. Gosh, I didn’t realize that this bout has actually lasted SEVEN months. I’m talking seven months for just this phase. She’s actually been sick since 2005.
This whole sickness continues to boggle the mind. What have we learned from this experience? Does she have a myriad of illnesses including CFIDS, Celiac, and Orthostatic Intolerance? Is she pulling out of CFIDS and moving into something else? Did she ever really have CFIDS? My answer is, of course she did. The onset was too textbook. Even the specialist, who sticks to the diagnosis of clinical CFIDS wonders if the majority of her problems are from Celiac. The symptoms are extremely similar. The new pediatrician questions whether or NOT she has Celiac. We will go to an gastroenterologist this month and finally put that question to rest. The cardiologist believes that CFIDS is an overall name for an underlying illness. I tend to side a little with him. I think it’s something that will one day be figured out by a researcher and make complete sense. While I’m fantasizing, I’ll add that it will have a cure. Hey it’s my brain and my thought process, I can add anything I want to.
Once again, my constant questions rear their ugly head. But isn’t it the questioning that moves us forward? I like to think so.