Discovering Spasms, Nurturing Children, Meeting Crystal, and Getting Sick

 You'll never guess how many times I started and stopped this post...unless you have kids, in which case you'll correctly guess "a heck of a lot," because children are born with this uncanny ability to know the exact times at which to call for us. And it's ALWAYS when we're in the middle of something else. Always. (And by "something else," I'm including that elusive thing called "resting.")

So...Eli is bathed, dressed, and watching a show on his Kindle, in his room. We put the baby gate up at his doorway, and I'm in our room about 5 steps away. That way, he is still there with us, if he needs us (which he probably will in about 5 minutes, as per usual) but he's got his own space, too..which he loves. Lily is getting her nightly, 45-minute, molten-lava-temperature shower...which I didn't mind tonight, because she needs the steam to help break up some chest congestion. She has this hang up about the bathroom door being shut while she's in there. When I told her I

 was going to close it, she said "But will I still get AIR??" She was seriously afraid she'd suffocate in the bathroom if the door was shut. After a full two minutes of explaining how oxygen works, I think she finally believed me enough to at least try it, just this once. Or maybe she's just too sick to argue her point the way she usually does.

Speaking of chest congestion...both of these kiddos tested positive for Flu-A yesterday. Ugh..Eli had his worst day on Sunday, and Lily has had her worst day (so far) today. Lots of coughing, snot, fatigue, headaches, and low grade fevers. (Eli says "My brain hurts, Mommy," when he has a headache...the things they say at this age are so freakin' cute.)

Eli seems to feel better today, and he's been fever free since yesterday. But our poor Itty Bitty (her nickname since birth) is still feeling pretty rough. The pediatrician said Eli could go back to school tomorrow, but Lily will stay home until she has at least 24 hours fever-free, with no medication to control it. She is so broken-hearted, though, because this is "Swim Safety" week at her school. Starting in second grade, her school district takes each class of kids to the district natatorium, where they separate them by skill level and give them water safety lessons. It's part of the curriculum, so parents don't pay any extra for this. I absolutely LOVE that our district does this, because it gives children who can't afford swim lessons the chance to learn how to save themselves, or someone else, in case of an accident in or near water. And, seriously, it's Texas - there are pools, literally, EVERYWHERE.

Anyway, we're hoping our girl turns the corner tonight, so she can be fever free and go to the last Swim Safety lesson on Thursday. She has cried many tears over missing it...and I don't mean the normal, everyday, Lily dramatics. I mean serious, broken heart tears..and it has crushed me. I hate it when they're sick and I can't do anything to make it go away.

Okay..so, that catches you up on that. On to other things...I met a new Primary Care Doctor yesterday. Her name is Shamalamadingdong or something or other...I don't remember. (Lesions, ya'll..) Anyway, I like her. She's very laid back and chill, with long salt and pepper hair...reminds me of a hippy. I like hippies. She gave me a prescription for preventive Tamiflu (only $5, SCORE!) which was good BECAUSE...I now have the flu. (Maybe the "preventive" part was a little too late..??) Cough, sore throat, headache, and low grade fever (which I realized at the MS Specialist's office today). Yup. Good ole' Uncle Fluberduber is here to infect the Trice house. Hubs thinks he's getting sick, too. What fun!! Break out the Clorox!! Wash all the sheets! Disinfect the children!! (The dog looks scared...) I'm currently sitting on my bed, typing this blog, and drinking a cup of lukewarm coffee because that drink has always helped when I have a sore throat. It won't keep me up either...I have a super high tolerance to caffeine, which isn't exactly a GOOD thing.

Saturday night, had some serious weakness, those violent leg/arm/hand/body shakes, dizziness, etc - the whole twelve yards (I've decided that "nine yards" just isn't long enough for the myriad of things that ole' MS can cause...so I added a few yards...my apologies to the Department of People Who Come Up With Catchy Sayings.) All I did was workout in the morning, putz around a bit, rest, then take the dog to the dog-washing place. I had to wash her in one of those tubs they provide. But I napped afterwards, and I assumed it would be okay to go to a special service at church with some friends. Ugh..I was miserable. Well, not really MISERABLE...I loved the service itself. But I physically felt miserable. I seemed to regroup a little on Sunday, then Sunday night the kids got sick and, well, you know the rest...

Today, I met my MS Specialist's Nurse Practitioner, Crystal. I like her. She's very personable, very kind, and seems very knowledgeable. When I walked in, she stood up (I love my actual doc, but she didn't stand up when I entered the exam room, and that's just a pet peeve I have because I'm old school...goes along with people who wear hats inside, or wear hats at the table, or don't take hats off when praying..I'm old fashioned, I guess). Anyway, Crystal said "I'm just going to leave this appointment open for you to ask any questions, and for me to try to answer them for you." How cool is THAT?!?! Especially since that's really all you need when you first get this diagnosis.

I talked to her about how it seemed like I had more symptoms NOW than when I got the first MRI in November. She explained how, because MS is often influenced by anxiety, that they find this to be very common in newly diagnosed patients. Apparently, since I was just diagnosed, I will probably notice and experience "new" symptoms pretty regularly for the first several months. She said that, as I get going on my treatment plan, and I start to mentally get past the shock of the diagnosis, that some of these symptoms will settle down. Others will stick around. I asked her about the word "remission," because I could have sworn I would have hit that bad boy before now...she explained that (because of the whole shock-anxiety-symptom connection mentioned above) my body is still pretty wonky (she didn't use those exact words, of course). She explained that the things they look for, in regards to actual relapses or flares, are new or worsening symptoms that last 48 hours or more. I had always seen the "24 hour rule," but she said they often see symptoms that pop up and then resolve within a day. So they use the 48-hour rule, unless it's obviously too serious to wait...i.e., can't get out of bed, can't see, etc. I showed her the video of my violent leg tremors, and she said that these are actually spasms (very common in MS) and prescribed Baclofen (muscle relaxant) for me to take at night when the spasms are bad. I'm hoping they'll help with the internal tremors, too, but we'll see. Many times, my EXTERNAL tremors start as INTERNAL tremors, but I'm not sure how the Baclofen will work on internal versus external. I'm not allowed to take it before driving, and it's best to take at night, she told me. Makes sense, since it's a muscle relaxant. It's good to know I wasn't making up those tremors in my mind...they're an actual THING. I thought I was going crazy...I swear it looked like I had Parkinson's Disease when I was experiencing them on Saturday night. So freaky...

I also asked about getting a cane, for support when walking. I explained how I get so weak when walking sometimes, and my legs and feet start to fall asleep. She told me that I need to learn how to listen to my body, say "no" to things, take breaks (even if I have to "make people wait" to do so), sit down if I feel weak, and pace myself throughout my days to conserve my energy. She said she didn't think a cane would necessarily help at this point, since it's more of an issue with weakness than balance. So, I'll take it. I'd rather not have to deal with a cane any earlier than necessary.

Well, that about sums up the past few days for me...they've been full, although maybe not full of all good things. I am so grateful for a new primary care doc who is close to my house; one I like, and one who gave me meds to help this flu not be any worse than it is. I'm thankful for a great Nurse Practitioner who made time for me today, and helped me understand (as much as anyone could) the crazy disease that has decided it wants to hitch a ride in my nervous system, and I'm thankful that the office staff at the MS Clinic was nice today. I'm INCREDIBLY thankful for a husband who telecommutes and could watch the kids and care for them so I could go to work this morning and to my appointment this afternoon.

Finally, I'm thankful for gluten-free chicken and rice soup, which I'm about to go eat.

Have a good night, ya'll...