July 20, 2014: Kaiser, My Second Home

Hi, folks! It’s been a busy week, so let me just jump right in! There has been some good and some not-so-good this week, so I’m going to get the not-so-good out of the way first and then talk about the fun bits of the week. And if you are a brave soul who makes it all the way to the end of this long post, you’ll find a special announcement!

After a lovely respite where no one was ill and we didn’t have any doctor appointments, Kaiser once again became my home away from home this week. Argh…I was there four times in four days! I can think of far better ways to spend my time.

I could give you the short version of why I was at Kaiser so often, but it occurs to me that I don’t know everyone who reads this blog, and maybe somewhere out there, there’s a reader who might have a genius bit of insight about what’s going on and how I can fix it. So I’m going to give you my medical history here (ha!! just a little bit…) by way of explanation….

I used to get migraines, and then they stopped when I was pregnant with and nursing Sam. Once I weaned Sam several months ago, they came back. They were just once a month at first, so I attributed them to hormones. (Because, you know, they were at that time.) But they started getting really long—the worst one lasted for 16 days. And they started showing up at other times. And they aren’t pleasant. Especially when I get the flashing lights in my vision—those are not particularly pleasant, and I can’t drive when it happens.

In the meantime, I also started having some other weird stuff going on. At night, my lower jaw sometimes randomly starts trembling when I’m trying to go to sleep. And I often feel as if I’m tipping to one side—like I’m leaning at a 45-degree angle or something, but I’m not. And my actions don’t always feel like they’re in sync with my brain—for example, occasionally I’ll have a hard time walking up steps because I feel like my feet are moving faster than my brain is processing it, so I’m struggling not to stumble. It’s an odd feeling, like being just slightly tipsy. But I rarely drink (maybe a glass of wine every month or two—that’s it!), so most of the time this happens, I haven’t had a drop.

And sometimes when I try to read, I can see that there are letters or words on the page, but I can’t make sense of them immediately—I have to work hard to focus and sort the letters and words into meaningful groupings. That hasn’t happened a lot, but it has happened.

And as long as we’re at it and I’m laying it all out on the table, I’ve been having some difficulty urinating, too.

I had chalked this all up to hormones, but Chris nagged me to talk to my doctor. I decided to eliminate the obvious things first: Got my eyes checked to see if all of this off-balance/reading difficulty stuff could simply be an outdated contact-lens prescription. Nope. My eyes checked out just fine—no change in the prescription. The eye doctor said the difficulty making sense of words was probably “a visual processing problem of some sort,” but she left it at that.

And I took a urine test to see if I had a UTI. Nope—came back perfectly clean. So I decided to listen to Chris and email my doctor. That was Tuesday morning, and she wrote back almost immediately saying, “You need to have an MRI tomorrow afternoon. Please try to make it to this appointment. If your symptoms worsen, you need to go straight to the ER.” And then she had her nurse call me minutes later with the same information.

Okay, now I was worried. Kaiser isn’t the type to call you and be pushy. They’re far more likely to email back and say, “Have you thought about our stress-management class? And are you drinking enough water?” Or they’ll email you and say, “Make an appointment with radiology at your convenience.” I don’t believe I’ve ever had one of their doctors tell me, “I made the appointment for you. You need to go in.” So needless to say, I was pretty freaked. Chris was in the office that day, so I was on my own…and petrified. All of the worst possible scenarios went through my mind, and I (stupidly) decided to Google it. You’d think I’d know better, wouldn’t you? The most likely thing that came up was multiple sclerosis, which I have to admit completely freaked me out at first.

Chris and I decided not to tell much of anyone until after my MRI, since there was no point in worrying people before we knew anything. So the rest of Tuesday, all of Wednesday, and Thursday up until my follow-up appointment were pretty stressful. Though we did tell a few people because we had to do some scheduling-dance to get everything worked out. And I have to say, I was unbelievably touched at people’s kindness. I had to cancel three things on Wednesday to fit in the MRI: a meeting with my friend Roxann, a meeting at Down Syndrome Connection for our Medical Outreach Committee, and Theo’s swim lessons. All three of those people who I had to cancel with were not only completely forgiving, but offered to watch my children for me while I was at the doctor!! And so did another friend who I talked to—and she has three young children of her own and is five months pregnant. I was just really, really touched at how readily people said, “Oh, please let us help! We’d be happy to watch the boys for you!” As it turns out Chris was able to work at home and watch the boys while I was in my MRI, but it was very sweet of people to offer to help. Really, it brought tears to my eyes that people were so thoughtful.

The MRI itself was pretty easy. I’m a wee bit claustrophobic, so they gave me a little Atavan to relax me, and it all went fine. I had to laugh because the MRI machine is in a truck parked out behind the hospital, right on the other side of the retaining wall from the highway. Felt like some kind of back-alley MRI or something! But it was nice and…MRI-ish…inside.

The follow-up appointment on Thursday was good and perplexing. It was good because the MRI came back completely normal (whew!!!). It was perplexing because the doctor can’t find any answer for what she described as “an odd constellation of symptoms.” She referred me to Neurology (my appointment is Tuesday) for a more thorough neurological exam. Much like Dr. Google (I know, I know—I shouldn’t Google!), my doctor’s first thought was multiple sclerosis. However, she said the clean MRI is a very good sign. It doesn’t totally rule out the possibility of MS (which is very hard to diagnose—apparently 5–10% of cases don’t show up on an MRI), but it is a very good sign. And no tumors, so that is good!

Chris is Mr. Optimism (always!), so he’s feeling happy and relieved that the clean MRI is a clean bill of health. I’m a little more on the pessimistic side, so I guess you could say I’m cautiously optimistic. I am very relieved for the clean MRI, but I don’t think I’ll feel completely at ease until I know what’s causing some of these odd symptoms. My doctor also ran a slew of blood tests to check for autoimmune disorders, but they all appear to have come back normal except for very low iron, which I’ve always had.

On the plus side, even if it is MS, which I was quite freaked about at first, I’ve realized that is not the worst thing in the world. I had thought MS shortened a person’s lifespan significantly, but from what I read it doesn’t so much shorten the lifespan as deteriorate the quality of life to some degree (the degree depending, of course, on the specific person, etc.). And while I can’t say I’d be jumping at the chance to have a lesser quality of life (who would?!), my main concern when I was letting negative possibilities spiral through my head was that I would have something that would cause me not to see my boys grow up. And that possibility is completely devastating to me. Quality-of-life stuff…well, I can make the best of that. Not seeing my boys grow up? That would be…unfathomable to me. I don’t even want to think about it. Thank god for no tumors….

Anyway, if anyone out there has any ideas or suggestions, throw ‘em at me. I’m fully expecting Neurology to also scratch their heads and say, “That’s odd—we’re not sure what to make of it either.” And if that happens, I’ll just need to keep trying to figure it out myself. My doctor says it’s not likely that it’s all side effects of menopause, but honestly, if the neurologist can’t find anything else, I’m going to go down that road and see what I can do. I was already in perimenopause before I had Sam, so I’m sure I’m still going down that long, slow road to menopause. My sister and a few other people I know have been using essential oils with much success, so I ordered a yam-derived progesterone oil that is supposed to help symptoms of menopause. We shall see how that goes. Wouldn’t it be nice if this was all just weird menopause stuff? I have heard that it can do odd things to your body, so….

On the subject of essential oils, by the way, I have to share something. My other Kaiser experience this week was with Sam—he has had a minor cough since we left Virginia (five weeks ago), and he suddenly spiked a fever of 102.5 on Thursday night. On Friday morning his body temperature was low (97.5), which is unusual for him—he typically runs about 99 degrees on any given day. And he was like a rag doll—at first he wouldn’t even sit up, and just kept lying on his back staring into space. Then he finally sat up, but was just listless, and his muscle tone was terrible—he was so floppy. And then he threw up in my hair (you’ll get to see photo evidence of this!). So I made him an appointment, just to make sure that cough hadn’t turned into pneumonia. It hadn’t, thank goodness—it’s merely a sinus infection, with a possible new virus on top of it. He’s got some antibiotics for the sinus infection, and it’s all good. But the cough has gotten pretty awful. On Saturday, it was so bad that he couldn’t even nap in the car—he was just hacking and hacking and hacking. It was like having a three-pack-a-day-for-thirty-years smoker in the car or something! So, I was a little worried about him being up all night coughing, and I smoothed a little essential oil on his chest before bed. It’s a respiratory blend that I had ordered for him because he so frequently has respiratory gunk. To my amazement, the kid who had been hacking all day didn’t cough at all overnight! Which is surprising, because he usually coughs most in bed (from lying down, I’m sure). However, he was pretty restless, so I don’t know if that was a side effect of the oil or if he was just restless from being sick. But regardless, I was very impressed at how well a tiny bit of that respiratory blend rubbed on his chest helped his coughing!

Okay, now that I got the semi-depressing stuff out of the way, let’s talk about the fun parts of the week! Theo finished up his third swimming session. Not only did he learn freestyle (they started with breaststroke) and elementary backstroke, but he finally jumped in on his own! He was perfectly capable of it before, but he just didn’t have enough confidence in himself. How did we inspire him to do it? Why, bribery with vegetables, of course! Theo’s swim teacher, Miss Karen, has a wonderful veggie garden, cultivated by her husband, and they get far too many veggies for just their family. So, she encourages her students’ families to help themselves to veggies, which Theo loves. I think he’d harvest her entire garden if given the chance! Anyway, one day we noticed her bell peppers ripening, and Theo loves bell peppers, so he asked if he could pick one. Inspiration struck, and I said, “When you can jump in without Miss Karen’s help, then you can pick a bell pepper!” So all week, that bell pepper waited for him. And finally, on Friday, he did his jump—and proudly picked the bell pepper, a cucumber, and a tomato, which he then ate for dinner. Mmmm, if only all parenting issues could be solved with Bribery by Vegetables, right?!

Anyway, here are two video clips of the little fish—one of the momentous jump, and one of him doing some freestyle swimming.

As long as we’re on videos, let me include one of Sam. Or better yet, how about two? One is of him talking and signing during his bath. It’s pretty long, but it’s fun to see him trying to say all the words. (Okay, it’s fun for me; I suppose others might not be so enthralled!) The other is of me reading him one of his favorite books, and him trying to say some of the animals and imitate their sounds. He is just a speech machine these days, which is so awesome!!

So, the weekend… On Saturday, we decided to go for a short hike in the Oakland Hills. There’s a redwood grove there that Theo and Chris recently explored while Sam and I were at a DS play date on the adjacent playground, and they wanted me and Sam to go back with them. So, that was our Saturday morning plan. It was a nice little two-mile hike, and the weather couldn’t have been better! After working up an appetite, we set out for lunch. Chris and I were hankering for ice cream (he’s an ice cream fiend now that he can eat it again, after a 15-year hiatus!), so I searched Yelp for ice cream in the town we were going to. And what did I come up with? Rita’s Italian Ice and Frozen Custard!!

So here’s the unbelievable part. Frozen custard is nearly impossible to find out west. It’s big back east—every time I go to Buffalo, I inhale it! But we don’t really have it out here. When you can find it, it’s almost always hard-scooped, and I prefer the soft frozen custard. It’s just one of those things that hasn’t caught on out here, for some reason. A few weeks ago, we did find a soft-frozen-custard mobile food truck, and it turned out to be good, but more like soft-serve ice cream. Now, soft-serve ice cream is good, but it’s not custard-good. Custard is richer and creamier…honestly, it’s just heaven on a spoon. So I was glad to find the food truck, but it was really more like a Dairy Queen or something. Good…but not to-die-for.

So when we were in Virginia in May, it turned out that there was a place called Rita’s Italian Ice and Frozen Custard in Williamsburg (and several other locations). It was heavenly—just as good as the stuff I get in Buffalo. We went there every day. (Chris is a bad, bad influence!) And we sadly said goodbye to Rita’s when we left.

When we got home, I Googled “frozen custard East Bay” and “frozen custard Bay Area” to try to find something around here, but all I found was the mobile food truck, a second mobile food truck out of San Francisco, and one place down in San Jose (which we still need to try). Nothing else. So when we were driving through Castro Valley (outside of Oakland), and I just randomly searched Yelp to find ice cream, I was shocked to have it suddenly pull up “Rita’s Italian Ice and Frozen Custard.” It hadn’t shown up on any Google searches!! And what’s more, we were just seven minutes away! (Which is odd because we were about 40 minutes from our house—so it’s rather random that I would just happen to find it right when we were in that area, where we don’t go very often. I think I’ve only been in Castro Valley about three times in my life, in fact.) So I yelped (get it? Yelp…I yelped! HA!), “Honey, CHANGE OF PLANS!!! Get off the highway at the next exit! Rita’s is here! RITA’S IS HERE!!!”

Chris was a skeptic, thinking it couldn’t possibly be the same Rita’s, or they wouldn’t carry the custard. But oh…I was right. It was indeed the same Rita’s, they had the custard, and it was divine!! Needless to say, I will be visiting Castro Valley far more often now. 🙂

On Saturday evening, we took the boys for a walk to the little downtown in our hamlet. Every other Saturday night during the summer, they have free concerts in the park. We hadn’t been to one yet this year, so we decided to go. It was a local alt-country band, and they were pretty decent. Theo was actually pretty nonchalant about it, but Sam loved it. He kept running all the way up to the stage and cheering. He waved at everyone as he went by, and he made more than a few friends along the way. I chased him up there at least half a dozen times, so we were pretty well-acquainted with people after a while. 🙂

I do love our little community for its…well, sense of community. The concerts in the park are a lot of fun (even though we rarely go, since it runs into the boys’ bedtimes), as is the Saturday morning farmers’ market. And I love that when I go to the store or the post office, I often run into people I recognize from the community. It’s a neat, small-town feeling. I like it! Very different from the somewhat anonymous suburbs I grew up in. They weren’t bad, but they didn’t have the feel of small-town community we have here.

On Sunday, we took the boys to their first Major League Baseball game—the Oakland A’s vs. the Orioles. (Baltimore? Sheesh, I don’t know. I’m lousy with sports.) Chris’s friend had four extra tickets and gave them to Chris, so we were grateful for the chance to take the boys! We had a lot of fun…separately. Chris and Theo stayed in the seats and watched about five innings of the game, and Sam and I wandered the upper concourse for a couple of hours. Sam did watch about an inning of the game from the seats, but it was hot in the sun and he was fidgety and bored, so I took him to the shady concourse to walk around instead. It meant I missed the game, but that’s okay. I like baseball games well enough, but Chris enjoys it much more than I do, so I was happy to let him stay and watch the game with Theo while I did Sam duty.

Chris said Theo actually did pretty well—his attention span can be quite short, so making it five innings was a smashing success. And Sam charmed the pants off of pretty much everyone he met in the upper concourse. An elderly man (a volunteer for the A’s) took quite a liking to him and finally announced, “I’m going to bring him home with me. I was never blessed with a little boy. I’m going to take him home!” And oddly, we met another little boy born just one day after Sam, and they were playing together. It was really cute—they were dancing. Sam loved the music that they play, and he loved the roar of the crowd. Every time the crowd would cheer, he would throw up his hands and yell, “AAAAAAAYYYYYYYYYYY!!!” enthusiastically! In fact, so enthusiastic was he that the woman sitting next to us (for that brief time I was in our seats) said, “Well, this obviously isn’t his first game—he knows exactly what to do!” I said, “Actually, it is his first game,” and she was quite surprised. I said, “He just really likes to cheer when other people cheer.” 🙂

The seats were actually really good—13th row on the third-base line. So I would’ve enjoyed seeing more of the game from them, but…c’est la vie. Maybe sometime when Chris and I have a babysitter, we can go back and catch a game.

For Theo, I believe the highlight of the day was the BART train ride there and back. He loves BART and was thrilled to ride it.

And now, for your hearty souls who have made it to the end of this very long blog, I have a very special announcement: It’s time to Step Up for Down Syndrome again! Or rather, it will be in October, and we’re starting our fundraising efforts now.

Truth be told, I detest fundraising. I really do. I hate asking people for money. But, Down Syndrome Connection of the Bay Area is such an awesome group and does so much for the local Down syndrome community that I push myself out of my non-fundraising shell once a year to try to raise funds for them.

This year, the walk will be Sunday, October 5. If you are local and want to join our team, we’d love to have you come! But if you’re not able to, we’d also love to have you with us in spirit!

Last year, we raised over $1,400 for Down Syndrome Connection. This year, I told Chris I wanted to beat that. He had a great idea for how we might: Why not give out a little prize to a donor each week? I liked the idea, so here’s how it will go. Every week, we will randomly select (out of a hat—very scientific and high-tech around here!) the name of one person who has donated within the past week. It doesn’t matter how big or how small your donation—you get one entry. If we pull your name for the week you donated, we’ll give you a fabulous prize!

Now, let me define “fabulous” for you. It will be something along the lines of an ENTIRE WEEK WITH THEO!!! Better stock up on caffeine for you and tranquilizers for him while you can…. Ha ha, just kidding. We want you to survive. Nah, it’ll be something small. Honestly, nothing elaborate—just a little token to thank you for donating. If you’re local, we’ll give it to you. If you’re not, we’ll mail it to you. 🙂

If no one donates in a particular week, perhaps we’ll draw a winner from the pool of people who have previously donated but who didn’t win during their week. Yes, yes…that sounds like a good idea….

Oh, and the weeks will run Sunday to Saturday. That way, I can announce each week’s winner on the blog on Sunday!

Sounds like fun, right?! So if you have a little money to spare and you’d like to help out a great group of people who work very hard to provide support, services, and community betterment (not to mention downright fun!) for people with Down syndrome and those who love them, then click here, and you’ll find the donation information.

Whew! Long-winded blog post over. Now for the pictures. The last several are from the camera we’ve been letting Theo use on our hikes, so some are from this weekend, and some are from the last redwood hike we did a couple of weeks ago. Enjoy!

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