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.
One of the most frustrating things about having CFIDS is that, as hard as you try, sometimes there is absolutely no pattern to good or bad days. A relapse can come from nowhere for no apparent reason. I guess that’s what has happened this week with Jessie.
Jessie has experienced insomnia now for several weeks. In addition, she has also had to deal with a two – three day headache as well as the general flu-like symptoms. Attending school simply did not happen this week.
I will admit that I’m cheating and wavering on my previous decision to try something new. She started on the Wellbutrin SR on Wednesday and immediately felt jittery like she was on steroids, plus the insomnia got worse. I read up on it and know that this can be a side effect that may or may not ease once her body is used to the medication. This could take days or weeks. Jessie was only on Wellbutrin for two days and off of her Pamelor for the same amount of time. I decided this morning to put her back on the Pamelor and just give her the entire dose at night rather than splitting it as we’d done before. (We’ve done this in the past and I know it’s okay. Otherwise, I wouldn’t dare do something like that without checking with the doctor first.) I’m hoping that taking the full dose of Pamelor at night will help her with sleep.
My reasoning is that, as stupid as this may sound, school has got to be finished within the month and the thought of playing with medication right now doesn’t make sense. The sad fact is that a solution to the problem of insomnia simply isn’t instantaneous. Getting caught up with school assignments would be difficult at this point even if Jessie was a completely healthy teenager. I don’t want her to have to deal with side effects of new medications at this time of year. I am going to call the doctor and tell them what I’ve done, then deal with that as it comes. If they have a better suggestion, I’m open. Let’s hope we make it through the next four weeks!
Have a good weekend.
If you look for a reaction similar to what Jessie had experienced last year, then she hasn’t had any since beginning to consume gluten products eight days ago. She says that her stomach has gurgled a couple of times, but then again, so has mine. So that’s no indication.
Believe it or not, both doctors, Jessie’s pediatrician and the auto-immune specialist from North Carolina, spoke yesterday afternoon. It was definitely a first for us so it gave us a little charge. Jessie was prescribed something to help her sleep for a very short term (10 days worth, if needed) and now we are being sent to a sleep center. Our appointment for a consultation is tomorrow morning. Jessie was really happy about this one (insert sarcastic tone.) Sheesh, this will make five doctors.
My attitude is a little on the low side these days. It could be Jessie, or it could be that I’ve had drywall guys and painters (who don’t speak english) in my house every day since Monday. Today, they will leave behind a layer of drywall dust. Or it could be that someone rear-ended my car on Friday. Now my car has three bad sides. Sheesh again. I need to remind myself of blessings, of which there are many.
We are currently on day six of our gluten consuming adventure/experiment. Jessie is taking the attitude that she probably does have Celiac Disease and is using this opportunity to eat as much bread, pasta, etc. as she can. So far, believe it or not, she has had absolutely no reaction. I am withholding excitement because, well, I’ve just learned to withhold excitement AND I’ve found out that while most celiacs have immediate reactions, it’s possible to not react for 5-7 days or to be asymptomatic. So, I think we both prefer to remain a bit skeptical.
At any rate, Jessie is, at this moment reheating leftovers from Olive Garden, including the garlic breadsticks! Yes, the girl is having a little party for herself.
Unfortunately, the insomnia returned about two weeks ago. I’ve got a call in to the pediatrician. If we get incredibly lucky and a miracle occurs tomorrow, Ms. Pediatrician and Ms. Specialist in North Carolina will have a little telephone pow-wow to confer on the matter before coming up with a solution/prescription. Could that actually happen? It sure would be nice!
Jessie has tried melatonin, tylenol pm and does pilates to relax not to mention the nortriplyline and Lyrica she’s already taking that should assist with sleep. At least it did until about 7 months ago. Nothing is helping now. It seems like the bane of her existance these past 7 months has been migraines, which were taken care of with the diagnosis and treatment for hypotension, and insomnia. The insomnia is a stubborn little nuisance that doesn’t want to go away.
Jessie did sleep better Saturday night. We all went to church on Sunday and then lunch. Afterward she said she wanted to go with me to the grocery store. Needless to say, the spoons were all used up and she was toast for the remainder of the day, which was okay because it was a very rainy Sunday.
By Sunday night, Jessie had received her 4th dose of Pamelor AND melatonin, but didn’t sleep. Just when you get your hopes up and are convinced that things are all uphill from here, it hits you. That’s what it’s like living with CFIDS. Maybe after getting a third day in she’ll sleep tonight and feel better in the morning.
It’s really kind of a boring day. Maybe I’ll be super inspired and energetic tomorrow and as a result, write a fabulous post. One can only hope.
I made the executive decision yesterday to put Jessie back on the Pamelor. After another sleepless night and the knowledge that I will be lucky if I can talk to a doctor by Tuesday, I called the pharmacist to get advise. He said, go ahead and put her on the full dose. YAY! She wasn’t happy about it, but I told her at least this pill is small! (And we are talking about a SMART teenager here. The logic is just out the window.) Anyway, she got two doses yesterday and I gave her a little melatonin last night as falling asleep is the problem. I asked how long it will be before we see the effect of the pills and dear pharmacist advised that two or three days should do it; she may even see some effect after a couple of doses. YAY again.
This weekend has been rainy. I have been as lazy as a slug, maybe worse. I’ve been cleaning out my magazine collection (wink wink) and doing laundry. Yep, quite slug-like. I didn’t even have it in me to feel guilty when the guys came in from this duathlon. Jeff has a terrible cold and he had to park cars, then marshall somewhere on the course in the pouring rain. Wes had to ride the sloppy, muddy course before the race began to make sure everything was still in place. (I will add here that this is actually fun to a 19 year old.)
Jessie had a new book to read this weekend, so I didn’t see her very much. Looks like today will be more of the same. First day is fun, after that it gets old.
Sorry. In all of my sluggishness, I should have come up with a wonderfully interesting blog post for today. Alas, when the body is a slug, so is the mind. My thought for the day.
Have a nice, quiet Sunday.
Yippee. Fridays are always good. Except this weekend it’s supposed to rain all day on Saturday and both Jeff and Wes are helping out at a biking competition. Sounds like fun, huh?
I’m making this quick because I have to be somewhere early this morning. The entire week was more or less a bust. Jessie kept claiming that she was feeling a touch better as the week went on, but I’m not seeing it. She REALLY doesn’t want to pile all of the meds on again. I am sure that she needs the Pamelor, or at least something similar. She did not make it into school at all this week and will HAVE to drag herself in today for at least two hours. If not, we have to turn back to full time homebound. I think I may call the cardiologist today to ask what we should do. I thought our appointment was next week but it’s actually the NEXT week and I really don’t want to see Jessie in this kind of shape again next week.
Well, I think that’s it. I have to add that this past week, Jessie made gluten-free shortcakes for strawberry shortcake and it was fabulous. I liked it better than angel food cake or the yucky pre-packaged shortcakes. I’ve failed miserably posting products and recipes. Maybe I’ll make up for it this rainy weekend.
Have a wonderful weekend.