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I’m going to begin with, “Isn’t summer delicious?” No stress, no alarms, no bed times, no parents standing over you screaming at the top of their lungs telling you to get ready for school. The deliciousness of summer ended for us two weeks ago. Yes, I’ll admit that, as a parent, I was ready to get the monsters kids out of the house. However, as the end approached I felt an even stronger, familiar ache in the old tummy.
I knew immediately that this deep ache was my all-time, “A” number one enemy, inspiration of all things therapeutic, of all things yoga, and quite frankly, the evening glass(es) of wine. Yes, it was (pause for effect) parent of a chronically ill child anxiety.
Now if you’re out there, currently perusing this post, you know who you are. No need to fool yourself. In fact, sometimes it’s better to go ahead and lay it all out in front of God and anybody else who cares to listen rather than bottling those feelings up deep inside.
Having said that, consider yourself forewarned that the summer has indeed ended and, while I may appear incredibly elated calm on the outside, inside I am a quivering ball of nervous mush.
The anti-christ Jessie has been in school for two weeks now and until today has done splendidly. She has been very tired in the evenings, but has been great about resting. This weekend, her boyfriend, Satan himself Nathan, came for a visit. I have to say that it was an enormously stressful terrific weekend. Jes, Nathan, Wes and friends did lots of fun things, interspersed with tons of rest. I think she’s had a bit of a flare (CFS term meaning tiny relapse) but it’s probably minor and short-lived. I confess that the timing probably wasn’t the best for a visit and the blame falls entirely on the stupid kids for planning this me.
No, Jessie isn’t magically better. She’s still plugging along. I guess the first night was a fluke and it’s taking a bit to get the medicine back into her system. I think she’s improving at a snail’s pace. Still no school, but I’m hopeful that today she’ll wake up a bit more refreshed and can go in for a couple of classes.
Last night my husband got some really good news with his job and I’m not allowed to give specifics. But suffice it to say that we made Jessie go out for a celebratory dinner last night. We went to Outback and at the end of the meal, Jessie begged me to share a Chocolate Thunder From Down Under. I was so full from my dinner that I couldn’t. We let her order it anyway because it’s one of the only places we know of that offers a gluten-free dessert. Even if you can gobble gluten happily, you haven’t lived until you’ve tried this dessert. It’s to die for.
In the end, keeping the tradition and philosophy for all women around the world, I ate chocolate, and ate, and ate. Jessie and I attacked that dessert like nothing I’ve ever seen. The guys were talking and a few minutes after we’d received the dessert, they happened to glance in our direction. Their mouths fell open and they died laughing. The plate was completed clean and we looked like two fat cats who’d just eaten the prized canary!
After dinner, we came straight home, put on our jammies (not the guys – that would just be wrong), piled onto the sofa and all four of us watched American Idol. Go Megan, aka – Twirly Girl.
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
Yesterday was a toughie. Jes stayed in bed most of the day until late in the afternoon. It was tough, but I made the executive decision to sit in bed with her. She was armed with her textbooks and I was armed with magazines and tea. I massaged her hand and arm when needed and, in general, gave a decent amount of self-depreciating humor. Well, I did at least until I was banished from the room for talking too much (blush). But let me tell you, when I WAS allowed to speak, laughing almost always ensued and that, after all, was my main goal. My thoughts are if your feel like crap physically, then you should at the very least be allowed to laugh as much as possible.
Jes is being a real trooper. She hurt like heck yesterday, but knows that this is a good course to take in the search for a cause, or cure, and to find out exactly what her symptoms ARE and treat them accordingly.
Unfortunately she wasn’t able to go to school yesterday. I gave her a couple of Tylenol PMs last night and HOPE HOPE HOPE that they helped her to sleep a little better. If so, our goal for today is to get into school for at least one class and to make up the test she missed on Monday. That would give her two hours so far this week. I continue to say this, but we are so blessed that the school has been easy to work with.
Lets keep our chin up for a better day for everyone who is in need of one.