I’m HOME ALONE! My husband took my son, Jesse, out of town to visit his folks up in WV and will be back tomorrow evening. Can you hear that? Yeah, me neither!!! Ahhhhhh…peace and quiet. (Except our A/C is running right now…oh, it just kicked off like it knew I was talking about it. Ha ha.)
You might be wondering what I will do with all of this “free” time. Cue up the Bob Seger music! Ha ha…no…I like that old time rock n’ roll too…but no.
The first thing I did was make a list of all of the things I was going to do.
Well, the very first thing I did was heat up my coffee…THEN I made a list of all of the things I was going to do. Well, after I heated my coffee, I checked Facebook (I have a slight addiction)…THEN I made a list of all of the things I was going to do during my free time. Then I had to make another list because I wanted it on a separate sheet and not just on the page for this day in the notebook I use as a planner. And then certain tasks on my list needed their own lists, so I made those lists. Then I set about making detailed lists for Saturday, Sunday, and even Monday. Then I wrote how long each big job should take me…should take…I’m usually wrong every time though. Everything always takes me longer than I think it should. And I had to rewrite a few of those lists because I like to write in pen, but if I make a mistake then it bugs me…so I have to rewrite it. (Yeah, I have zero idea where my son’s OCD tendencies originate. It’s a total mystery.)
You might be wondering how much of the things on the list/lists I have done so far. Well, I’m not sure because as soon as I got done with the lists, I put them aside and ended up doing a lot of stuff out of order because I had gone upstairs. (And yes, I listed things in order of how they should be done.) I got into a “Just Fucking Do It” mode. Ha ha! So I took a shower, cleaned the bathroom, and pulled out some clothes to pack for the Chicago trip. Then I washed towels, cleaned a little in the kitchen, got the mail, and took out the garbage. Now I am in my office, which cleaning it is on my list, but I’ve been working on some blog stuff that I’ll be posting tomorrow.
Gosh, I’m so out of order that probably need to make a new list of things to do. And if you’re wondering, this blog post IS on the list.
I’m so far behind on most things in my life that it’s ridiculous. I have lists I make nearly every day. I don’t always write them down. Or if I do, then I might still forget what I wrote down because I don’t always look at them. I used to be THE List Queen. I guess I still am, but I’m not very attentive to my kingdom.
I do wonder sometimes if I really do have ADD. Or is it a few other health things that might be going on with me that keeps my brain from focusing? Or is it just stress? Why can’t I get my shit together? It’s rather annoying. My house is a cluttered mess (except my bathroom…it is very clean! 🙂 ). I am in a GET RID OF ALL THE THINGS mode. But I have limited time to really clean this weekend, so I want to make my jobs pay off greatly. I really am itching to make another list to see what I can cram into the time I have left. I might run out to get a few things I need for the trip and would rather do that tonight than wait until tomorrow. And I want some Chinese food and some Merlot (does that wine go with Chinese?…don’t know…don’t care really). And I want to watch a movie (not sure what I’m going to watch yet tho’). And I need to paint my nails, but I forgot to put that on my list. I’m sure there are tons of other things I need to do. (I really will likely make another list as soon as I’m done with this blog, which I know will probably take me longer than I think it will take.)
I’m also going out of town with Jesse on Monday on a little vacation to the Windy City. (Or the Wendy City because I’m going to try to meet up with my good friend and fellow PANDAS Mom named Wendy. 🙂 ) Jesse is looking very forward to going up in the Willis Tower to the Skydeck and to go to 360 Chicago. OMG–they’re so high! And I have it on my list to finish mapping out all the rest of the sites we will see while we’re there. I wanna do the Adler Planetarium and the Navy Pier and the Field Museum. I think we’re going to need to do 2 days in the city–ha ha…seems like we need to do 10 tho’. 😉 The forecast calls for a 40% chance of rain the whole time we’re up there this week. Bummer. But we’ll still have fun because CHICAGO(!), and the place we’re staying just outside the city looks super nice. (Thanks Hilton Honors points plus cash option!) I love my little Mother/Son adventure trips with Jesse.
This is our third trip to Chicago and is purely for pleasure and fun. The other two trips to Chicago were for IVIG.
During the first trip in November 2010, Jesse was in a major exacerbation, and he hardly remembers it. He mentions parts of it, and he liked the hotel pool.) We mostly only saw the hotel, the doctor’s office, and the surgical center where he received the IVIG. We did go to the Cheesecake Factory for the first time too…yum!…but we were there for lunch before seeing the doctor and didn’t get any cheesecake). I remember just about everything about that first trip and can put myself right back in all of those places. Jesse not sleeping at night. How my husband had to carry him through the hotel with no shoes and no coat on because he refused to put them on, and how cold it was up there in Chicago on our way for the first infustion. Jesse freaking out when they went to put the IV in for the IVIG and watching the doctor and two nurses hold him down while I just had to sit there. How excited he was for his iPod we gave him to keep him occupied during the procedure, and how he gripped that thing tightly the whole time. How he got completely dressed to go the second day. My husband’s back going out on him and having both of them lying in hospital beds. (Oh my!) And I remember the smiles we got from Jesse that second evening after the 2-day outpatient infusion was over, and how he was smiling the next day too.
I remember the second trip in November 2012 fairly vividly too. We did the second IVIG almost exactly two years after the first one because we were still seeing PANDAS symptoms, and he would still flare. Some of the tests we had run at the time indicated that it would be a good idea. But Jesse wasn’t in an exacerbation, and we were able to leave the hotel. We went to The Cheesecake Factory (yum!), out for Chicago-style pizza one night, and to Target to do some retail therapy to help relieve some stress. We also went downtown and saw the Shedd Aquarium and the Museum of Science and Technology (they had a Peanuts exhibit Jesse loved–he’s a big fan of Charlie Brown, Snoopy, and the rest of the kids). Oh and that bitch Garmin took us on a crazy route that led us all over downtown in zigzags on our way back to the hotel where Jesse enjoyed the pool. But for the IVIG, it still took 2 nurses to hold Jesse down to do the IVIG, and afterwards he said “take a picture”. A little later he said “this is quite relaxing, actually” referring to the IVIG. Sigh. And back at the hotel after the first day of IVIG, he set up a secret clubhouse in the hotel closet…it was adorable. The second IVIG was fairly uneventful, even though Jesse did get a really bad headache before we were going to leave on that Saturday. We administered steroids as directed, and he was better within half an hour. Then I missed an infection in January 2013 thinking it was still residual healing from the IVIG, and he went into a major exacerbation that was a slice of hell. BUT we pulled him out of it in March 2013, and he’s doing very, very well now. (We’re almost at one year from any major flare, but he does still react to exposures, especially at school. Sigh.)
For this third trip, I did make a call to his PANDAS Specialists office and am going to try to go see him while we’re in Chicago. I never did my final report after the IVIG and want him to see how well Jesse is doing. I want to let his doctor know that Jesse went back to Montessori school for fourth grade and is enrolled for fifth. That he was in Cub Scouts, played basketball, took a little acting class, has been doing a local Kid’s Comedy Open Mic event, is signed up for some summer camps next month, and all of the “normal” stuff that we’ve been doing. I believe we are a PANDAS success story. But I know that we could still fall prey to an exacerbation, and I remain very watchful of every single little thing. It wasn’t too long ago that I thought I might have to homeschool again. Whew! PANDAS sure is a crazy ride…but that’s a different blog for a later date.
So, I have some things I need to get done and more lists to make. Hope you are having a great weekend. Enjoy any free time you might get. 🙂 I know I won’t get half of the stuff done on my list, but it’s fun to dream about being that productive. And making the lists is half of the fun!
P.S. While working on this blog post, I stopped writing for a little while to do a few more things on my list(s) and go get Chinese food and have a glass of wine. Cheers! Now I’m going to go watch a movie and paint my nails. Woohoo!
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.