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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 will be SO glad when tomorrow is over. I know, don’t wish your life away. That is a good philosophy, but I will be SO GLAD when tomorrow is over.
The struggle goes on between my hubby, Jeff, aka Tower of Strength, and my daughter, Jess, aka Little Tower of Strength. Wes and I are caught somewhere in the middle, hiding out as often as possible and remaining completely neutral. If you read my last post, I noted that Jeff will be heading to Virginia tomorrow. Jess desparately wants to go, but is just now beginning to feel better and has shown poor judgement in what should be the typical CFIDS life. You know, do a little, rest a bit, do a little more, rest a bit, go to bed at a reasonable hour, don’t throw caution and rationality out the window – that kind of thing.
Jeff actually began to rethink his position during the weekend – momentarily. It didn’t last, though, because Jess continued to cry every day and write letters to him every night. At a certain point it just becomes a battle of the will. Needless to say, Jessie has pestered her dad to death and now there is NO WAY he will change his mind because, as most parents know, it will give her the impression that she can continue this begging and pleading and pestering and writing of even more begging letters behavior for any future occasions during her time in our home.
Deep down she’s a pretty reasonable kid. So AFTER tomorrow, when the wailing settles down, I will explain to her relationship lesson 101. Make your case respectfully, then sit back and be the model child from that moment on. That is your only chance that a parent will relent and change his or her mind.
So, having said that, if you are a religious person, pray that our family will survive the mental anguish during the next 48 hours. If you are not a religious person, throw a few wishes in my direction if you have a sec. By the way, we’re not entirely evil parents. The whole family will be heading to Virginia in exactly one month.
Health Update: Jessie is continuing to feel better! She is walking on the treadmill and doing pilates every day. She and her dad even went for a very short bike ride yesterday afternoon.
It’s been a long week. Jessie hasn’t been able to attend school any more this week since the one class on Monday. Sleep has been practically nonexistent. We added back all of the medication last week and the Charlotte doctor said that we should try increasing the Lyrica if Jessie continues to have trouble sleeping. So I’m going to give her 50mg tonight instead of her usual 25 mg. For some reason, I don’t think that will make much difference.
We got the news this week that the school is not going to recommend honors or AP classes next year (11th grade) for Jessie. The reasoning for this, according to administration, is that she can’t get the full impact of the course (lectures, discussions, etc) while working from home. I was surprised when we got the news and Jessie argued at first, then realized that there is nothing she can do about it. This may be hard to understand, but hearing those words was like a slap in the face. First I felt a sense of relief, then confusion, a bit of anger and then more confusion.
Jessie is one of the rare cases of CFIDS that doesn’t have the brain fog or cognitive issues. In fact, throughout the past three plus years of dealing with this debilitating illness, she has remained on the honor roll, making only a few B’s. She’s been blessed with a gift of knowledge that absolutely didn’t come from her mother! Anyway, the news leaves me torn. I know that Jessie will have less stress next year in regular classes, which is a good thing. I’ve never been academically tough on my daughter. In fact, her dad and I have both encouraged her to take fewer advanced classes lately to relieve stress. However, I know my daughter. Jessie’s bar for herself has been set incredibly high regarding her classes and her grades. She always insists on taking rigorous classes and strives to make only A’s.
Since Jessie’s had this illness, she’s been robbed of her teen years. She can no longer participate in sports. When she’s sick and even many times when she’s not, she isn’t up to participating in extra-curricular activities because energy has to be carefully measured. Also, when she’s sick, she doesn’t feel up to seeing friends. This past year we had to move to another state and Jessie was taken away from her support system, her friends. Because she was only in school for two months, she didn’t have the chance to create the friendship she desperately needs. This move was very difficult for her.
So, basically the only thing that Jessie absolutely KNOWS that she has is her exceptional ability to learn. Now because of this stupid disease, she will have to attend classes that she will literally float through. Jessie wants to work in medicine, possibly becoming a doctor. She jokes that she’s had so much experience recently with doctors that she may as well become one.
Don’t get me wrong, I am at the opposite end of the spectrum when it comes to pushy “helicopter” parents. I’ve been more in favor of quiet time than over-booked days. Before this illness, activities and sports were limited. Now however, I don’t know what’s right for her. Under normal circumstances, this girl is fully capable of taking dual-credit high school courses in the 11th grade. She has aced honor courses for the past 3 years while attending less than half of the actual classes. Is it right to make her take a lower level class, beneath her true ability? Will this yank out the one thing she has now that gives her pride?
On the other hand, we know that we’re not talking about normal circumstances. Will taking the regular classes give our daughter time to breathe and maybe a little more energy to attend a few football games and dances? Is this part of the grieving process I’ve read about for parents of chronically ill children? Is this a parent’s guilt after uprooting a teen and making her move to another state, away from her friends? Most importantly, where is a good psychiatrist when you need one?
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.
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.
Yesterday was another bad day, but not quite as bad as the day before. I know, depressing start. Anyway, Jessie woke up again after having a terrible night. She got up, ate breakfast and I sent her back to my bed. She then slept until around 12:30. I think that was the difference in making the day a little better for her.
Her goal was to get to school in the afternoon, but then the her shower zapped what energy she had. As a result, Jessie worked from home the rest of the day. As the day went on she did begin to feel a little better. I took this as a good sign? I add the question mark because we’ve been here so many times. You just feel as if you go round and round with the cycle of symptoms so much that, at a certain point, you are totally confused. Maybe writing this down will help me; at least I’ll have a log to refer back to!
Right now the major symptoms are insomnia, really bad joint and muscle aches interspersed with headaches. I now wonder if this is something that is nonstop without medication? Does it follow a cycle of remission and relapse without medicine? Does the medicine just lessen the occurrence of relapses and give you the ability to live a more normal life?
This is interesting to me because, after 3+ years of dealing with this illness, I was curious (along with all of Jessie’s doctors) to see if she was indeed getting better and that this disease had worked it’s way through her system or if the disease was still as strong as it was in it’s earlier stages and would resurface with the absence of medication. My thinking is that, unfortunately, it’s still strong. I think Jessie is still holding out with the hope that the pain she’s dealing with right now comes from her body’s withdrawal from the medication. (When I say medication, I am referring to Pamelor, which helps control insomnia, headaches and muscle pain as well as Lyrica, a pain medication. She is also doing without all of the supplements for the time being and is only taking the Florinef, which helps the hypotension.)
Oddly enough, the color that we noticed in her cheeks in the earlier stages of taking Florinef has disappeared. It’s clear that I am totally confused and have more questions than answers. Again, I apologize for talking in circles.
I guess we’ll hold out until next week. I think we go back to the cardiologist on Monday or Tuesday and then we will have a follow-up telephone appointment with her doctor from North Carolina. What I’d REALLY like is for both doctors to consult one another on the phone to decide on a plan of action. Is that too much to ask? I think not!
It’s Thursday morning. The rain hasn’t come yet. I’m feeling strangely hopeful today. Let’s put on our happy face and convince the world that, indeed, TODAY will be a good day!
“Once you choose hope, anything’s possible.” – Christopher Reeve
Since Jessie has recently been diagnosed with Neurally Mediated Hypotension (meaning that your brain is giving your heart the wrong signal) with the end result being Orthostatic Intolerence (meaning you get dizzy a lot), dizziness has been one of the “questions of the day” in our household.
A funny thing happened the other day. Jessie comes into the kitchen. I ask, “How are you feeling? Any dizziness?.” Her reply is, “You know, I just thought everybody saw black flashes and spotty lights from time to time. I thought it was a normal thing.”
I ask, “Do you mean EVERYBODY or people with Chronic Fatigue?”
Jessie says, “Everybody!”
We had our laugh when I told her that, no, it is NOT normal to see stars and black flashes on a daily basis. Heck, it’s not even normal to have it occur on an occasional basis! Apparently the girl has been living with this condition for, well I don’t even know how long! She just grew up thinking that it was a normal thing for everyone. I know, this doesn’t make our family look very bright.
That got me to thinking about what NORMAL really is. Of course, “normal” is a relative term. I think I remember hearing that people who have been born blind are more often than not completely content with their condition because it is “normal” – something they’ve always lived with. If a child is abused and never knows the difference, they think that this abusive behavior is “normal”. The list goes on and on.
It just amazed me that a 16 year old would think that seeing stars is NORMAL! How can this be? What else does this child think is NORMAL? Think about it, this could only be the tip of the iceberg.
You know, it’s crazy thoughts like these that keep parents awake at night.
Today, the cardiologist decided to increase Jessie’s Florinef from once to twice a day. This is what I was hoping for. He also seemed to really take an interest in cracking the puzzle of her illness. This is something I’m ALWAYS hoping for.
The doctor said that instead of just throwing more medicine at Jessie, why don’t we increase the Florinef while at the same time cut out the other medication she has been taking. Hmm…I kind of like this idea. I already felt strongly that her medication needed major tweaking and, let’s face it, she’s already unable to attend school. We all agreed to do this experiment. So here we go, trying something entirely new.
They did another EKG and everything looked good. Jessie got a little freaked when she asked the assistant if she would have to wear the heart monitor overnight again. The assistants reply was, no, but there was a possibility that the doctor may want her to wear a 30-day heart monitor. OH MY GOSH. It was one of those “speak and jump WAY back” moments that this poor little assistant didn’t know anything about. I thought Jessie was going to take her out right then and there. Luckily, she wasn’t required to wear the 30-day thingy, the assistant survived the strange encounter and all was well.
At any rate, whether good or bad, we should have an interesting week ahead looking for symptoms, side effects, spontaneous growing of additional limbs, mustaches, etc. We’ll keep you posted.