Friday, December 25, 2009
Don't get me wrong - my ILs are wonderful hosts. They do everything they can to make our stay for Christmas comfortable. They clear out their bedroom of anything fragile or electronic so the kids can stay there. They set us up in the other bedroom/office that has a sleeper sofa. They stay on the pull out couch downstairs. DH's grandmother sleeps on the daybed in the second room downstairs. They stock the kitchen with foods and drinks that they think we like.
And Christmas itself is wonderful, too. It's been kind of tough for me, a Jewish girl, getting used to doing anything Christmasy, but after being part of this family for almost twenty years now, I'm finally coming around. We come over in the afternoon of Christmas Eve, drop off our stuff, and then drive together to a family friend's house for Christmas Eve dinner. We come home, the kids change into their new pjs and then carefully put out the cookies and milk for Santa and the carrots for the reindeer, and then my FIL reads the Night Before Christmas (well, this year we go home really late and had to bypass the story) before we put the kids to bed. Then we grown-ups hang out talking and laughing.
We get up early the next morning (Christmas day). I set up breakfast to cook (my food contribution) which, this year, was completely prepped in my crockpots the day before so all I had to do was turn them on when I woke up. We open presents in our pjs, eat breakfast, then open stocking stuffers and cards, and then spend most of the day playing with our new toys (which this year meant trying out the new Wii games). Very nice.
My MIL makes a special dinner for us all, and my ILs buy pies made from a local orchard - so good. And that is where I feel this wonderful sleepover should end.
But . . . . no.
The tradition has now been established that we also spend the night Christmas Day and go home the next day before lunch. Which means one more night on this sofa bed from hell. One more night sitting in front of some random football game hearing family stories that are told every year while trying to get the kids to go to sleep. One more night trying to fall asleep while the other grown ups are still awake in the room directly below me and every word and sound seems amplified back up to me. One more night away from my nice, soft, warm bed with my pillow that is flattened just the right amount for me and my comforter that I can put over my one exposed ear when I fall asleep to block out all extraneous noises. One more night of only thinking about all the stuff around the house that I want to do but can't because I'm here.
This year I tried persuading DH that I go home after dinner tonight so I can get a jump start on cleaning out the playroom and finding spots to put all the kids new toys. He could stay at the ILs for the night and keep the kids there for as long as he wanted the next day. I could get a good night's sleep and have a productive night and morning. He was so upset that I even suggested this, stating how much he wanted me to stay at his parents, blah, blah, blah.
And so I'm still here.
And I feel guilty for complaining. I know plenty of people have no family, or their family is too far away to spend the holidays with. And my ILs are wonderful people. It's nothing against them personally.
It's just . . . well, I want to go home!
Tuesday, December 15, 2009
What I don't love is that I am the closest child. My sister is about fifteen minutes away, so we all get together for Shabbat dinner and all other holidays, and my brother is in Conneticut (we're outside Philly), so I am the go to if there are any big problems. Which, as the middle child, I am fine with - I'm the peacemaker and the caretaker.
Unfortunately my mom has lots of health problems. She has a really bad back (degenerative disk disease) that is made worse by her weight. She has asthma and, even though she finally gave up smoking (YES!), still is very susceptible to respiratory infections. And she gets really bad vertigo every once in awhile, bad enough that she cannot move for fear of falling.
I just got a call from my mom, a "just-in-case call." She had spent a lot of the morning very short of breath, dizzy, experiencing heart palpitations, and raising her arms made it worse. She feels better now (though still short of breath some). I mentioned that maybe the fact that she has had a cold now for a few days is affecting her breathing and that she should call the doctor.
"Don't worry," she reassured me, "I have an appointment for Monday."
So when I get the next phone call where she can only gasp out my name on the phone and I call 911 and we take her to the ER, I'll be sure to explain to all the doctors there that it's all okay: she is going to see her doctor on Monday.
Saturday, December 12, 2009
Lots of rambling thoughts tonight; I apologize in advance if this post goes all over the place.
The first two nights of Hanukkah have been quite successful. Check out the pictures below to see B's reaction to the homemade science kit we gave him tonight:
Tuesday, December 08, 2009
Growing up at Hanukkah time each of us had a choice: eight small presents or one big present. And that's just the way it was.
When I first started spending Christmas with his family, I was literaly speechless at the amount of presents they had. It felt like their Christmas tree had thrown up all over their living room. And when the kids came along, it got worse.
Don't get me wrong - I LOVE getting presents. And I love giving presents too. But I don't want our kids to grow up just expecting all of these presents! Personally, I don't think they end up appreciating what they get when they each have five, six, seven presents to open in one morning. I would much prefer they get one or two things each and then time to play with each thing as they open it.
We celebrate Christmas at my IL's house. This is how I am able to wrap my brain around having our Jewish family celebrate Christmas at all. And it is my IL's show. We help them pick out a tree and then whatever presents my ILs get for the kids goes under the tree. DH and I do not buy the kids Christmas presents; instead we buy Hanukkah presents which we give them during the holiday at our house. DH feels very strongly that the kids should open a present for each night of Hanukkah, which translates to us buying six presents for each child (one night will be at my parents' house, so they will get gifts from them and my sister; another night we will be at my ILs and they will give them a Hanukkah present or two that night).
In my perfect world, here's how we would be celebrating Hanukkah this year:
1st Night - Hanukkah dinner at the Temple
There will be games, songs, and activities, plus a little goody bag included in the cost of the dinner, so that is the gift for that night.
2nd Night - two books for each kid
3rd Night - Sunday dinner and Hanukkah at my ILs
Gifts from my ILs
4th Night - special toy for each kid
5th Night - Surprise for the kids!
We have a tradition each year of picking a night where the kids put on their pajamas, get bundled up, and we all go off in the car with Hot Cocoa to go look at the Christmas lights. My thought would be to change this tradition so that it will happen one night during Hanukkah with the kids never knowing which night it will be - we'll wrap up a new pair of PJs for the kids (something that we give them each year for when we spend the night at the ILs for Christmas) and when they open it they'll know it's time to go look at the lights.
6th Night - A home-made kit for each kid
For example, J loves art right now, so her kit would include lots of paper, stickers, fresh markers, and maybe the materials needed for a special project.
B LOVES science, especially watching the reaction when you pour vinegar into baking soda, so his kit would include a huge box of baking soda and large bottle of vinegar (so he could use as much as he wants without having to ask each tim) along with some other household ingredients that he could use independently to create fun chemical reactions.
A's kit would include graph paper and colored pencils along with some kind of Lego design book so he could write down the Lego designs he makes (something he loves to do).
7th Night - Gift certificate to spend an afternoon alone with whichever parent they choose
8th Night - Shabbat/Hanukkah dinner at my parents
Gifts from and for my parents, my sister and BIL, and for my niece and nephew
That's what I would like to do. DH - not so much. Maybe after the holidays this year and I can show him this plan and start laying the groundwork for next year. Probably he still won't go for it. Not because he's a jerk (I know he's going to read this and worry that people will think that) but because he wants them to get more. I realize that marriage is about compromises, so I have been compromising about this every year, but maybe we can move more to my plan a little each year. Maybe.
Sunday, November 29, 2009
Monday - Easy Chicken Enchiladas
Wednesday, November 18, 2009
I have been on Provigil for a year or two.
Yeah, a year or two. I honestly can't remember which. Did I mention I have no memory? No? Yes? I can't remember!
Last week I started the new, longer lasting form called Nuvigil.
Is it just me or is the new name really funny?
Both medications are for people like me who are constantly tired due to some kind of sleep disorder. It's not a stimulant but works to keep me in an alert stage longer. Don't ask me any more about how it works because that's all I know.
In any case, tomorrow night I will take my first sleep aid. I'm really nervous about this. Any time I have ever taken medication that also makes you sleepy (like Benedryl) I feel drugged and in a fog for the whole next day. My doctor has assured me that this is very, very short acting. In fact, it is so short acting that I take TWO doses during the night. I know, setting an alarm to wake up in the middle of the night so I can take another dose of sleep medicine seems counter-intuitive to me, too, but that's what the doctor told me to do. This medication is not designed to help me fall asleep - trust me, I have NO problem falling asleep - but rather to help me get into a deeper, more restorative sleep. Apparently it's a heavy duty medication: it will be Fed Exxed to me, I had to answer all these questions over the phone from the special pharmacy, talk to the special pharmacist for about fifteen minutes to get all the specific directions on how to take this, PLUS I received a special DVD and information packet from my doctor - which reminds me, I better watch it before tomorrow night.
Oh yeah, nothing nerve racking about any of this!
Monday, November 16, 2009
I'm ready and willing to write again.
Apparently I took an unplanned leave of absence from the blogging world.
I've gotten really into using Facebook, which, as any of you who also use it know, is incredibly addicting. I update there frequently, and get comments on what I write, so I haven't felt the urge to blog like I used to. But I'm coming back to you, my blog.
One of the reasons is the Philly Blogger get-togethers, usually organized by Bossy and attended by lots of other local bloggers. We organizing our next get-together for November and I'm kinda feeling like a fraud if I don't start writing again.
And the other reason is the anonymous comment I just received. Wow.
So let's see, what's going on?
DH is teaching at the Middle School this year instead of the high school and loves it!
I'm teaching Pre-K instead of the two year olds and love it!
J is in Kindergarten in the mornings and loves it! [Wow, we're just such a positive family.] Things were pretty complicated for a while there since her school doesn't start until 9:00 AM and there is no bussing for Kindergarteners and I have to be at school by 8:30. We ultimately ended up paying for before school care at the community center - so frustrating when we only need it for about 45 minutes maximum each day. We had to do piece meal after school care for her since she is finished at 11:45 and I have school until 1, but at this point it's all taken care of.
A and B are both in second grade. A still has a 1:1, but has also been having lot more trouble staying focused in school and has definitely been having lots more tantrums. B was just finally diagnosed with ADD and we are working on creating a school plan for him.
And that's all I have to say for now because I have lots of work to do. It's not much, it's definitely not brilliant or inspiring or incredible writing, but that's just the way it is.
Wednesday, August 26, 2009
DH had surgery to repair a small hernia on Friday. He could have waited longer but since we have no idea if and when his weird neurological symptoms may return and how much time he may end up needing to take off from school, he scheduled the surgery for before school started.
Fortunately they were able to squeeze him in.
Unfortunately we both had to miss some of our week at the shore (my parents rented a place for all of us, including my sister and her family, for the week).
Fortunately they were able to watch the kids so we could deal with the surgery ourselves.
Unfortunately the doctors were not able to do it laproscopically since they had already done that twice before.
Fortunately they sent him home with good drugs.
Unfortunately he's nearing the end of the bottle and he still hurts.
Fortunately he's doing better.
Unfortunately it's not soon enough for either of us.
But that's enough of that.
I still have so much to do to prep for school, to make sure all three kids are ready for school, to figure out how J will be getting to and from school (no bussing for Kindergarten and it's only half day), to sort the mountain of paperwork that is always looming, to do massive amounts of grocery shopping, and to finish organizing the entire house.
And maybe figure out how to bring about world peace.
Tuesday, July 21, 2009
So I came up with a small list of things to do. Easy stuff, nothing too strenuous. And I set the timer so I would be up and about for ten minutes at a time before sitting down to rest. And I was doing pretty good. I cleared off the dining room table, put away stuff that was on the kitchen counters, wiped down both of those areas, even sorted and washed a load of laundry. And between each item I took a break.
But...then the boys were dropped off right when I was about to take a break. We have had so much help the last week and a half it has been amazing, but alas, no one was able to host a playdate for A and B (J, on the other hand, went home from camp with a friend for the afternoon). DH had a doctor's appointment, as usual, so it was up to me. I sat down with them and wrote up a schedule for the afternoon (they do better when it's in writing) (so do I) and they started their Wii time. So it was a good time for me to take that break I had missed.
But....then the potential housekeeper knocked at the door so we could walk through the house and talk about what I wanted her to do. Ever do that before? I'm soooo glad I had a chance to wipe down some surfaces, because as I walked with her I kept seeing things through her eyes, especially as she talked about how she would need to do a deep cleaning the first time she comes out to do things like "degrease the dining room lighting fixture" (wow, it is pretty filty!) and "dust the baseboards" (hadn't really looked at the in a while - they're disgusting!). Don't get me wrong - I got a really good vibe from her; didn't at all feel like she was looking down on my housecleaning skills. And I'm excited to get started with her after I talk with my sis about how much she's going to charge me to see if she thinks that's fair in exchange for me watching her daughter four aftenoons a week (she better!). I am REALLY looking forward to someone to clean once a week, and cannot WAIT for the "deep cleaning" she promised. After we walked through the house, I made sure we ended up at the dining room table so I could sit down. I wasn't feeling too good by then.
After we talked about the nitty gritty details and she left, I realized that I now needed more than just a little sit-down on the couch. Luckly DH had just arrived home from his doctor's appointment, so I went upstairs to lay down.
Today I woke up pretty uncomfortable. In the interest of full disclosure (because I know what a stickler for honesty all my loyal reader are - ARE there any readers at this point?) I have been trying to avoid taking the pain meds so I can just deal without them. Thinking about it today, I have no idea why I thought that was a good idea. The doctor had told me it would take two weeks until I felt better. Yesterday was one week. I have to just suck it up and accept that I'm not going to feel perfect this week and allow myself to take it a little easier. I'm thinking up lots of productive things I can do sitting down, things like sorting and filing household paperwork, cleaning out and restocking the medicine closet (if DH can bring me what's in there one basket at a time and then go out and buy all the stuff I put on the list), sorting through all my teaching stuff that is currently residing in the basement (even if I WAS feeling 100% I would still need DH to go down there and get me one box at a time - I can't stand basements) - you get the idea.
Right now DH took the kids to "the good Barnes and Noble" (the one in DE that has a train table and small stage in the kids' section) with the promise that he would buy them each one book. I have quiet in the house. I believe I will take another dose of pain medicine, take five minutes (and no more) to put away some dishes drying on the counter, and then start working on the basket of papers that are right next to me. It's not the most exciting way to end this blog post, but that's the way it is.
Monday, July 20, 2009
So I came up with a brilliant idea: in exchange for watching my niece after preschool Monday through Thursday (my sister is going to start teaching full-time in September!) from 1 to about 4, I'm asking my sister to pay for someone to come once a week and clean the house. In fact, in an hour a lady is coming over to give me an estimate.
With our budget so tight, I could never justify paying for someone to clean the house. This last year has been crazy - in addition to DH's medical mystery that managed to steal days, weeks, and sometimes months from us with no warning, I started the year teaching many, many hours a week and by December was back to working full-time. When DH was able to work, he was also working full-time. I couldn't work up enough energy to clean.
When I was a SAHM I still was finding lots of side jobs to bring in some income, in addition to raising my three and watching my niece and nephew full-time. I know other people have it harder than I did and still managed to keep the house clean, but I had a hard time maintaining that.
Right now I am home still recovering from this stupid gallbladder surgery. It has been a full week, so today I am attempting to do a little bit around the house. I'm following FLYlady's advice and am using my timer - working for 10 minutes and then sitting down and taking a break for 10 minutes. Don't get me wrong - my DH has been amazing taking care of me and the kids AND the house this past week, and we've had so many other people bringing us meals, groceries, taking the kids for playdates. The support has been incredible. I've been using this great website to coordinate everything we needed and it has been invaluable. But there's still a lot of stuff you end up seeing while you're stuck in bed or on the couch for awhile, stuff that when you're up and about you end up ignoring, stuff that fades into the background after a while, but now it's driving me crazy! I hope my DH doesn't read that and think I'm at all implying that he has not done a good job around the house because that's NOT at all what I'm saying. I'm just kind of excited to feel well enough to finally get up and do a little bit.
And I'm extremely excited to know that a prospective house cleaner will be coming by soon.
My timer has beeped; Time to get my lazy butt off the couch and moving.
Thursday, July 16, 2009
The doctors ran all the usual tests (all of which came back normal) and decided to keep him overnight. On Saturday they ran a couple more tests. While we waited (and waited and waited) for the doctor to come in and discharge him, my stomach started hurting. Then it was my back as well. I couldn't find a comfortable place for myself. I tried laying down flat in his bed (DH was sitting in a chair by then), pushing my back against the wall, going for a walk up and down the hall, but it kept getting more uncomfortable. By the time I had walked downstairs to get the car and pick him up, I was definitely in enough discomfort to agree to go directly to the ER.
After a quick physical exam, the doctors were pretty sure it was my gallbladder, and the ultrasound confirmed it. They admitted me in order to do the surgery on Monday. Yeah, my last meal was lunch on Saturday, and then just clear liquids until they finally did the surgery on Monday around 2 or so. They were able to operate laperscopically, using four small incisions, but it still hurt a lot more than I expected. I opted to stay an extra night to help manage the pain, and I came home yesterday.
And just to show how much my DH totally rocks, I came home to a room that had just been straightened up, to a bed with fresh sheets on it and a huge helium "Get Well" balloon tied to it, and a cleaned off night table that had a big stack of magazines and fluffy new "chick lit" books and two "chick flick" DVDs.
There is so much more I can write about this. I could reflect on the reason this all happened, that maybe I was meant to learn compassion by switching places with DH, that he was meant to get a feel for being the one not in the hospital bed for a little. But my stomach hurts and I'm tired, so that's all I'm writing for now.
Wednesday, July 01, 2009
What? You mean you've still been here? You mean, I'm the one who has been gone, the one who hasn't posted in
Well, welcome back to me, then.
For those of you just joining the party, let me introduce myself:
I have always felt that you can tell a lot about a person by how they choose to describe themselves first. With that thought running through my mind, I can't decide how to start my description. I guess since the kids are at theater camp and I'm sitting on the couch next to my DH ("dear husband"), I'll start there.
I'm a wife. I've been married to my best friend for fourteen years. We met in high school when we both auditioned for and were cast as romantic opposites in Harvey. We were "just friends" for two years and dated for four, so we have been together for twenty years.
I'm a mom. I have three kids - seven-year-old twin boys (A and B) and a five-year-old girl (J). A loves anything electronic, Legos, and music. He also has Aspergers Syndrome, which is a form of Autism. B loves his daddy, creating crazy obstacle courses like on Wipeout, and Star Wars. He also probably has A.D.D. and we are working on getting him evaluated this summer. J loves coloring and arts and crafts as well as teaching "dog school" to all her stuffed animals and dolls. DH and I agree that she has P.P.M.S. (pre-pre-menstrual syndrome).
I'm a teacher. I currently am running a preschool summer camp at the Jewish preschool I teach at during the school year. I also teach Hebrew and Religious School at my synagogue. Before I had kids I was an elementary teacher. After I had kids I found lots of ways to bring in money while I stayed home with the kids. I provided full-time childcare for my now six-year-old nephew and for my now three-year-old niece. I ran a Moms' Morning Out from my house two days a week. I even had my own Kids' Birthday Party Business, providing theme-based entertainment/crafts/activities at different people's houses.
I'm also CEO and CFO of this household. I am sure I could come up with lots of other words to describe the various jobs I have with relationship to the house (chauffeur, laundress, cook, etc.) but I think Chief Executive Officer and Chief Financial Officer kind of sums it up.
My blog used to be named "My Life as a Stay-At-Home-Mom" but once the boys were in school I started teaching nearly full-time (J was at the same preschool) and that name just didn't seem right any more. I renamed it "Keeping My Head Above Water" because most days that's just about all I can do, keep treading water so I don't drown.
Before last year, my life felt really, really full teaching preschool, attempting to run our household, and taking care of all three of my children's individual needs. And then things got interesting. July 10th of last year we began DH's bizarre medical journey, which, unfortunately, still has no end in sight. In a nutshell, DH has been experiencing Left-Sided Hemiparesis that comes and goes with no obvious explanation. He has been hospitalized five or six times at four different local hospitals, been seen as an out-patient by two different neurologists, a rheumotologist, a neuropsychiatrist, a Lyme Disease specialist, an Infectious Disease specialist, a neuro-opthamologist, his general practioner, a gastrointerolgist, a psychiatrist who specializes in Conversion Disorder, two different physical therapists, an occupational therapist, a speech therapist, including two different doctors at Johns Hopkins. Each relapse lasts anywhere from as little as two days to as long as three months. Twice now the symptoms have affected both sides of his body. At its worst, he is unable to move independently and cannot be understood. At its best, he needs a cane and can lift his left arm about as high as his shoulder. And then sometimes, for no reason that we can determine, the symptoms vanish completely. We cannot predict when a relapse will hit, how long it will last, or how bad it will be. And even though he has undergone every test that every doctor can think of, we still do not have any idea what is causing his condition.
And that's my life right now.
I decided to name this post what I did because "streamline" is my new favorite word. A colleague recently told me she was working on streamlining some things at school for all of us and I instantly fell in love with the idea. My goal is to figure out how to streamline my life. I don't exactly know how, but I do know that I plan to blog about it, so YOU are invited to join me on this adventure. I would love to hear any ideas on ways that you have streamlined any area of your life; who knows - maybe I can apply it to mine!
Sunday, May 24, 2009
His visible muscle loss in the calf of his left leg might not improve.
The cognitive function that he has lost might not return.
And we still do not know the cause.
We cannot predict his symptoms from day to day. Every time I see him I surreptitiously examine him to determine if his speech is more slurred, if his limp is more pronounced, if he is using his left arm or relying on his right. We used to have a pattern - it would get bad, suck for a few days, and then improve. We seem to be stuck at the suck stage with no end in sight.
He saw a Lyme Disease specialist this week who told him that this still could be Lyme Disease, even though that was ruled out three different times before. The results from his tests will come back in two weeks.
DH will see a NeuroOpthamolgist next week, and I'm optomistic (or at least I'm trying to be) that she will at least be able to help his double vision and headaches. At this point, even though he is not allowed to drive or teach, he still is trying to grade all of his seniors' research papers. We finally discovered that using a magnifying sheets allows him to read more than two without getting a severe headache, but his new cognitive difficulties are making it hard for him to focus and follow what the kids are writing, which obviously makes it harder to grade.
The fatigue seems to be one of the hardest symptoms for DH to deal with. He is not a napper - something that I never understood since I could take a nap at the drop of a hat, but that's a story for another day - but now after the smallest exertion he gets so tired that he has to take a nap for a couple hours, in addition to sleeping on average of ten hours each night.
Another direction we're going to try is seeing a Rheumotologist at the suggestion of the neuropsychiatrist from Johns Hopkins. She mentioned the possibility of some kind of auto-immune disease. That appointment is in a few weeks.
I am trying to stay focused on the present, but it's really tough not to think ahead. Will he be able to drive again? Is he going to be able to go back to work come August? Will he be able to handle working this summer? And if the answer to all this is no, will we be able to get by on my preschool teacher's salary? Will we be able to continue paying our mortgage, or will we have to sell our house and move somewhere smaller? Or, thinking smaller, will we be able to afford to pay for J to go to the camp I'm running this summer? We have enough in savings to cover the fact that he didn't really get a paycheck this time around, and the "sick bank" will kick in for his next paycheck (other teachers can donate sick days to cover the rest of the year), but we have no idea how long this is going to last. What if he has to be hospitalized again? We are so grateful to have medical insurance, but the cost of all the extras adds up quickly - parking, meals and drinks while visiting, tv and phone for him, ER copays, hotel rooms, gas, and food if we have to go back to Hopkins or the Mayo Clinic, the list goes on and on. And then there's the copays of the PT that he currently has to do three times a week.
It is really tough not just to crawl back into bed and pull the covers over my head. I indulged that desire a little on Thursday, begging DH to take over when he came home from whatever doctor's appointment he was at that afternoon. I went upstairs at FOUR, shut the door, and got in bed with a book. I read for half an hour and then went to sleep. For the night. I woke at midnight to pee, get a little bit to eat, read for a little bit more, and then go back to sleep again. Escapism at its best?
Obviously I can't do that every day. There are just so many balls to keep up in the air - and pretty soon I'm going to remember that I don't know how to juggle! It's not a matter of not liking all the different things going on right now. Some of the really important things are parts of my life that I absolutely love, like teaching. Spending time in the classroom each day forces me to be completely present, even if it is just for those three hours every day. The hugs, the smiles, the joy at hearing a new story or learning a new song, it just fills me with an energy. And to have my daughter across the hall from me, to be able to see her at lunch, or let her hang out in my office coloring in the afternoons if she has a bad day, it's a huge perk.
But there's the house upkeep, the bills and paperwork (which I swear multiplies and scatters around the house every time I turn my back like a warped version of Red Light Green Light), the groceries and meals, the laundry (oh, the laundry), the maintenance of both cars, the yard.
And did I mention I have two boys in first grade? We had conferences with both kids' teachers this week and it just ended up giving me such mommy guilt. We have been concerned that B might have ADD since before he entered Kindergarten. This is a kid who would lose focus while writing his own name so the first two letters looked okay and the rest of the letters end up scrawled across the page because he turned to look at what someone next to him was doing. His Kindergarten teacher didn't see it too much, but acknowledged that they move around a lot, ten minutes on the rug, fifteen minutes at the desk, and so on, so it might just not really be coming out too much. His first grade teacher saw it from the beginning but really wanted to try lots of different strategies before we started working with a doctor. She gave it her all. At our conference this week she looked at me and sighed, explaining, "I have been teaching for forty years and tried every trick I had in that forty-year-old bag of tricks, and nothing has worked. I truly believe this is not something he can control." The thing is, I knew this, I've known this for a while - I've been a teacher for a long time and know the symptoms - I've tried so many strategies at home without success. But have I pursued getting him seen by a specialist? No. Did I research how to make homework time for a child with ADD easier? No. Did I make more of an effort to work with his teacher to ensure success for B at school? No. Every year that I taught elementary school I would invariably have a student who reminded me of Pig Pen, not due to the child's personal hygine but because the child's possessions seemed to end up in almost a cloud around him or her, spilling from the desk/cubby/school bag at all times. This week I found out that B is that child in his class. His teacher had told me half way through the year that B is having so much trouble getting and staying organized that I have to do it for him. Did I? No. And here we are, at the end of first grade, and we have gone no further than filling out the basic parent/teacher rating scale to show that we all see the same concerns.
After B's conference we proceeded to A's IEP meeting. On the plus side, he is showing improvement. He no longer needs special warning about fire drills or to sit near a door for assemblies so he can make a quick escape if necessary. He is handling changes in his schedule without throwing himself to the floor and crying, though he does need someone to answer his persistant "Why" or he will keep asking. He definitely will need a PCA again next year, which is a personal care assistant that helps him stay on task, organize, and help him cope if he gets overwhelmed or upset. One of the biggest things that came out of this meeting is that his whole team feels that A would also benefit from ADD testing. All the teachers feel that both A and B are capable of doing so much more in school and that there is something getting in their way.
And why didn't I do something about this earlier?
Okay, don't start, I KNOW why. I know that DH's illness and unexpectedly ending up working full-time kind of took more attention that I anticipated, but still - these are my CHILDREN. How did I allow them to slip through the cracks like this? They needed more from me and I didn't give it to them. I'm a teacher and I didn't do more to help my children deal with this major learning obstacle. There is so much more I could have done at home with organization and structure, but I simply did not have it in me by the time I got home from work each day. I can't let that happen next year. Appointments with pediatric specialists take so long to get, but we received the paperwork and will fill it out and send it back tomorrow and call often to try to get in when someone cancels. Or maybe two people will cancel back to back so we can take both boys at the same time?!! Okay, now I'm just getting crazy.
So let's see, if I really was juggling, how many balls would I have up in the air right now? Hmmm...
- DH's health
- The school
- Our finances
- My own health (really have to start focusing on that more!)
- Summer work (two different camps)
- All the other stuff I'm not thinking of right this second
Anyone out there actually know HOW to juggle? Maybe that would help. A little. Maybe?
Sunday, May 10, 2009
Friday, May 08, 2009
DH's symptoms are officially classifed as Left Side Hemiparesis, which means muscle weakness for his entire left side: facial droop, tongue unable to move to left side (which slurs his speech), arm, hands, fingers, leg, feet, toes - all on left side. On Sunday, just to switch it up a little, the right side experienced the same thing in addition to the left side. At this point the right side is back to about 90% normal but the left side is the worst it has been in a long time.
The symptoms had been coming on for about a week and then going away, usually for around a month, but the time in between kept shortening until in March the symptoms came and have not left. Every time the symptoms left before DH was left with full function, as if nothing had happened. Along with the regular symptoms, he now has severe headaches that never fully go away and double vision (side to side) now for both close up and far away. The doctors do not want him left alone (for fear of falling), driving (because of the double vision), or back at work. He has used up all his sick days, so now we are living on my preschool teacher's salary.
Since every single medical test (MRIs, MRAs, CAT scans, Lumbar Puncture, Blood work, EMG, EKG, EEG, TEE, X-Rays) has come back clean, the doctors keep going back to Conversion Disorder. The problem is that he is NOT under stress (actually removed himself from ALL extra-curricular things he used to do at school) and has not experienced any traumatic event. He does have Obsessive-Compulsive Disorder and takes Prozac for it, but that has been under control for almost ten years now.
In January he started seeing a psychiatrist that specializes in Conversion Disorder and after working with him for all these many weeks she clearly states that this is NOT psychological. But the neurologists keep going back to that diagnosis because they can't find anything else.
If it turns out to be Conversion Disorder, we do understand that it doesn't mean he's faking this. The symptoms are real and he has no control over it. However, even his regular psychiatrist feels that there is something medical at the bottom of this. We just haven't found it yet.
Please feel free to do your own research, forward this to anyone you think might have some good ideas, post questions in the comments section here. The symptoms have been coming and going since July 10th now. The jokes about Dr. House, Mystery Diagnosis, and all the other medical shows out there really aren't funny anymore. We just want his quality of life back.
Sunday, May 03, 2009
And I started crying.
I don't know how much more of this I can take. I can't make light of this. I can't make a joke. I can't put a positive spin on this. I can't keep a smile on my face to make everyone else around me feel better. At least for tonight. Maybe tomorrow I can fake it again. Maybe tomorrow I can smile at the rest of the world, make a joke about how we've been to all the other hospitals in the area so we decided to try one more out.
But for tonight I'm scared.
He's in bad shape. It's bad enough for DH to have lost so much strength on the left side, to have lost sensation in his hand and foot, and not knowing if the mobility and sensation he has lost is permanent or not. It's bad enough that DH has had to use a cane to walk around for the last three weeks, that his head has been hurting him so much since March, that his left arm has been hurting him so much that it's waking him up at night. But today I came home from a camping trip with the kids and my parents and my sister and her family, a trip that DH chose not go on because he needed to rest and try to catch up on his grading since his double vision has been getting so bad that he can only do one or two papers at a time, and DH could barely walk. Or talk.
He holds his cane with his right hand, and uses his right side to push himself up. Only now his right side isn't working right, so he can't push himself up, and his both legs aren't moving too well. His tongue has not been able to move to the left side for about six weeks now, but he clearly figured out how to compensate because his speech has improved drastically. Of course now his tongue won't move to the right side either, making his speech incredibly slurred and hard to understand.
Right now DH just got admitted to the neuro floor at HUP. I was able to get a sub for tomorrow so will head back to the hospital as soon as I get all the kids off to school.
Tomorrow is another day. Let's see what happens.
Sunday, April 26, 2009
Friday, April 24, 2009
The neurologist at Johns Hopkins didn't have any better idea than the neurologists in Philly.
After a very thorough examine, the doctor here at Hopkins had nothing. I pushed hard for him to do more than simply offer some migraine medicine that might help with his headaches, dizziness, and double vision (all new since the end March) and he finally suggested that we could try getting seen by the Neuropsychology department. Both DH, the doctor, and the receptionist doubted we would be able to get an appointment any time soon, but going with the idea that it never hurts to ask, I called and begged, letting them no we're from out of state and took off both Thursday and Friday so pleeeeease could they see him. Suffice it to say that they scheduled him for a nine am appointment today.
Right now I'm sitting in the waiting room here trying to keep myself occupied and awake while I wait. We had a two hour interview with the doctor and two different students - very in-depth. Then they took DH away for two straight hours of all kinds of cognitive testing (memory, reaction time, word/picture recognition). We had a lunch break at 1 and now he's back in there yet again for another three hours of the same type of testing. If nothing else, we will have a ton of data when today is done.
DH's "relapses" of weakness over his entire left side have become constant - non-stop symptoms for over a month now. He has to use a cane when walking more than a few feet because his left leg gives out with every step. He is no longer able to lift his left arm above shoulder level, even with assistance from his right arm. His left hand now has tremors that may or may not be connected to usage. His left arm goes numb and tingly many times, often waking him from a sound sleep a few times a night. He has lost enough sensation in his left hand that he didn't realize that a bowl fresh from the microwave was piping hot until he switched it to his right hand. His head hurts constantly, ranging from a dull throb to sharp pain that forces him to lay down.
Our hope at this point is to get ANY idea on how to stop this from happening again. When we get home I'm going to push for him to start doing PT and OT yet again before he loses even more mobility in his left arm. Things are bad for him, and they're getting worse. When the doctor yesterday basically shrugged his shoulders in puzzlement over DH's condition, I just went numb. I can only pray that this appointment today helps us learn enough to make a difference, to stop this deterioration and turn it around.
Thanks for reading. I needed to share with friends and get more prayers going. We have to find out what is going on - I don't know how much more of this he or I can take!
Wednesday, April 22, 2009
I wish I had actually brought the mini powdered donuts TO the fabulous spaghetti dinner I just got back from, a get together of lots of Philly Bloggers like Bossy and DG and MemeGRL and her and them and . . . lots more but I'm too tired to link to them all, hosted by Lora. But instead I ended up eating most of them myself on the way there and on the way back.
I wish our trip tomorrow to Maryland was actually a vacation, and not because we finally got a neurologist at Johns Hopkins to see DH.
I wish we could have afforded to take the train tomorrow.
I wish that DH was feeling well enough that we could walk around the Inner Harbor if/when he is not seeing doctors.
I wish the house would magically clean itself.
I wish the house would magically clean itself. No, that's not an accidental repeat, I just really, really, really wish this one would happen.
I wish my boys weren't having trouble at school.
I wish I could figure out how to divide my focus between all thre kids and their various issues/needs, DH's major medical crap that has been going on since July, work, our finances and trying to figure out how we can afford everything when we both have used up all our sick days (thus don't get paid for every day we don't work anymore, including Thursday and Friday when we're at Hopkins) and still have to pay for the hotel and food and whatever else while we're there, the house, and . . . what did I forget? Oh yeah - my sanity!
I wish DH's health crisis never started.
I wish that any one of the many, many doctors came up with a reason this keeps happening.
I wish any of the many, many, many tests that DH has now undergone have given any indication of why this keeps happening.
I wish DH's health crisis did not escalate to where he is now in constant significant pain in his head and left arm and must use a cane all the time because his left leg gives out with every step - and it's been like this for over a month straight.
I wish I could blink my eyes and just make everything stop for a week - a full week where I didn't have to do anything, didn't have to be anywhere, didn't have to talk to or be responsible for anyone, a week where I could sleep as late as I wanted and escape into cheesy romance novels, one after the other, without even leaving my bed.
I pray that the doctors at Johns Hopkins will look at DH and KNOW what is going on. I pray that this trip will result in answers and help. I pray that someone has finally put a new bulb in to that light at the end of the tunnel and someone else has figured out how to finally flip the switch and that sucker is staying on for good!
Sunday, April 05, 2009
I can step outside into the bright sunlight without wincing from the pain.
My cough has (for the moment) subsided enough to allow me to function.
My computer has not kicked me off-line for the last five minutes (something that it has been doing a LOT lately and I don't know why).
I have the house to myself.
I don't know how long any of the above things will last, so I must take advantage of them all immediately.
DH has gotten an appointment with a neurologist at Johns Hopkins. For those of you joining me for the first time, he has been experiencing significant left side weakness of his whole body (head to toes) on and off since July. No doctor has been able to determine why yet, though a lot of scary sounding things have been ruled out. The symptoms have been increasing in frequency and occurence, and for the last two weeks or so have been accompanied by severe and constant head pain. His appointment is for April 23rd. DH's parents have agreed to pick up the kids from school that day and stay at the house overnight if we choose to spend the night in Baltimore. I just sent an email to Hopkins attempting to coordinate additional tests/appointments for the 23rd and 24th so we can make the most of our time there. I will also call them first thing tomorrow to talk with one of their medical concierges (yes, I think that sounds fancy and just a little strange, too) to see what we can arrange, and then I will look into finding us the most inexpensive lodgings. The lengths that DH and I go to in order to have some alone time . . . first it was just trips to the ER to watch better cable than we have at home, but now it's to spend the night in a hotel - woohoo!
And now it is officially spring break. All week. Last "break" I spent almost the entire time at work. This time I have made the decision that I am NOT going to work at all. I plan to spend time around the house gardening, organizing, cleaning, getting the kitchen ready for Passover, cooking, and spending time with my family. For three days this coming week I have scheduled it so two of our three will be at a local kids' gym for their holiday camp and a different child each of those days will spend the morning with me, lunch with DH and I, and the afternoon with DH. We so rarely get to spend any one-on-one time with the kids, and for the two of us to have time with any one child is almost unheard of. I am so excited with this plan. It also will allow DH and I to both have half the day on Wednesday, Thursday, and Friday to ourselves to do whatever we want. All in all, a good plan for everyone. Of course, one of the quotes that is so relevant in my life, whether I want it to be or not, is "Man plans, God laughs," so we'll see what will ACTUALLY happen this week, but at least all of you out there in the blogosphere that are still reading my blog (Is anyone out there in the blogosphere still reading my blog?) know that I had a kick-ass plan. And that is all I can do.
That being said, time to tackle Mt. Washmore and my Paper Mountain. Wish me luck!
Saturday, April 04, 2009
A few days ago we came home to a plastic bag filled with two boxes of Easy Mac hanging on our front door knob. Still don't know who did that, but again, I have to say that I have really good friends.
I'm not writing now in the hopes of someone else reading this, taking pity on me, and doing the same thing. Really, I'm not. But I do have to complain.
DH is learning to live with the constant, unrelenting head pain. He's not happy about it, but he is learning to suck it up and deal with it. The head pain and the limp. And the left arm pain and tingling. And the slurred speech that now seems to come and go at random, along with the drooping face. Advil and Tylenol are his new best friends, even when they don't seem to be working. And he is still going to work, teaching high school kids how to love reading, and coming home and spending time with the kids (even though he has been removing himself from really loud situations due to his headaches) AND pitching in with the chores. Yeah, I've got a good husband. We even got an appointment to be seen by a neurologist at Johns Hopkins on April 23rd. Not sure yet how we're going to do that (kid coverage, lodging, working with someone there to maybe schedule other appointments/tests for that day or the next to make the most of the visit) but one step at a time.
Today the cold that I have been working really hard to ignore all week came to the forefront stating, "I won't be ignored." It began pounding on my head, jumping in my lungs and the back of my throat so I will cough every minute or two, just making a general nuisance of itself. I stayed in bed as long as I could before beginning to fear that I would go downstairs only to discover complete and total anialation (which still doesn't look right to me but the spell-checker says it is so who am I to argue). I called DH to complain - he was out getting yet another MRI and MRA of the brain (FYI: getting an MRI when your head is pounding is not fun) - and he agreed to come home for a few hours so I could rest. Even though his own head is pounding and his arm hurts and leg keeps giving out.
But wait, there's more. My sister calls this morning virtually in tears, asking if her kids could come over for a play date. She is sick, way worse than me, with a fever and a cough that is probably bronchitis or some such thing, so how could I say no? DH picked them up on the way home. I called my mom to make sure she could go over with some chicken soup and check on her (she was already planning to - I have a good mom, too).
To sum it up: DH is sick with his funky unknown, mystery neurological ailment. My sister is sick with a fever and the chills and a bad cough that might even be pneumonia. And I have a little cold and will have to take over with the kids again in fifteen minutes.
What a whiner I am.
Wednesday, March 25, 2009
It is 6:30 and I am only NOW getting to making dinner for everyone (Mac and cheese - and no homemade for my kids - they get the blue box. I used to really enjoy trying out new recipes for mac and cheese, finding healthier and tastier versions of the classic. But once the kids tried "Easy Mac" there was no going back. Now I just figure, "Why bother?"). They need baths after dinner (they've all been playing outside in the mud, otherwise I'd have no problem skipping it). And did I mention their normal bedtime is SEVEN?!!
I have a big proposal that I have been working on all afternoon (in between talking to DH's doctors, getting him some better pain medication, keeping the kids from running into our bedroom, making sure the boys do their homework correctly AND put it back in their folder AND put their folders back in their schoolbag - a surprisingly difficult set of tasks, and monitoring everyone's Wii time to ensure that no one goes over their alloted fifteen minutes) that is due tonight. Unfortunately I only found out about it yesterday morning.
I guess it's really no question about why I've been gritting my teeth so much lately, or why my head and back hurt so much. I simply have to grin and bear it and just get through it. Let's just hope my teeth have not been ground into my gums by the end of the month.
Friday, February 20, 2009
Sunday, February 15, 2009
While I worked really hard going back through every single post recently in order to replace actual names with initials in an effort to maintain some sense of anonyminity, many people that know me do read this blog. And that's okay. In fact, that's more than okay. I like that my life is an open book. I like that people can read this and see that even if I sometimes come across as a great big "know-it-all" (as one of my colleagues told me recently in the nicest way possible), that is never my intention.
On the other hand . . . people I know read this blog. People like my husband. And my mother-in-law. And I like to use this blog to vent when I'm upset, to blow off steam and complain. And, as it is for most people, who do I most need to vent about? My husband. Don't get me wrong! My husband is an amazing, wonderful, incredible man. He is truly my life-partner. A superb father. A great human being. But when you are with someone, anyone, day in and day out, for as long as I have been with him, there are times when we make each other upset. They might be minor, they might be big, but that's just the way things are. Being mad does not negate all the incredible, wonderful things he does every day. It does not negate how he helps around the house so much more than he used to. Or that he has cut back on almost all the extra-curricular stuff he used to do at school so he could spend more time with our family. It's just an emotion, usually sparked by something minor.
Side note: As I write this, my stomach is cramping something fierce from some kind of stomach bug that is making me stay close to the bathroom. I had plans to go out this afternoon, but when my stomach started hurting so bad I told DH that my plans changed and that I would be grabbing the laptop and be camping out in our bedroom for the rest of the day. DH, being the wonderful person that he is, just brought me some lemonade and dry toast, between trips up and down the stairs doing loads of laundry and playing with the kids. Yeah, I'm lucky he's mine.
The thing is, since he reads this blog, any time I have vented here, he has read it and been hurt. It doesn't matter if my next post is about how great he is, it doesn't matter if it's a post from last year when he was at school WAAAAAYYY more than he was here, it hurts him to read how bad he made me feel. And it hurts him knowing that other people that know us can and do read this and may think less of him. And no matter how much better it makes me feel to get everything off my chest, it is just not worth it to hurt him like that. And that has made me really uncertain how to proceed.
But what it comes down to is this: my need to keep this blog, to have a place to write down my thoughts and feelings and memories that will soon be forgotten, is huge. We all joke that I have no memory, but it really sucks to not remember so much of my life. I need this blog so I can look back and remember. The blog stays. And I will continue to write in it.
And for those times when I'm just so steamed I have to get away from my incredible DH for fear I will say something I will really regret, those times when if I don't vent and work out my thoughts in writing I might just explode, those are the times I will write in that totally private, completely anonymous blog I started. And I'm not ever sharing that blog with DH.
A girl's gotta have SOME privacy, right?
Tuesday, January 20, 2009
- I can't sleep.
- Started using Slim Fast today. I used it before my wedding and it worked. I know it's not the ultimate answer, that it will only do to get me started, but I think I just need a kick start. I'm also trying the Slim Quick Cleanse. Have to start getting serious about my weight!
- I'm starting to get sleepy.
- Got my Provigil back today. Haven't had it since December due to an insurance mistake. Wow - forgot what it felt like to be totally awake!
- This is not a very interesting post.
- J is coughing a lot. Took her to the doctor today and he diagnosed her with a sinus infection. We go to a practice of about six different doctors, so as I drove her there I told her she would be seeing Dr. P___. She asked me if they were all named Dr. P___ now, so I explained to her that just the one she was seeing today was named Dr. P____ and the others all had their own names.
- Is this post boring enough to make YOU fall asleep?
- Maybe it's enough to make me fall asleep. Of course, I know as soon as I lay down J will wake all the way up and start crying and I'll have to go in and help her fall back asleep, thus making it hard for me to fall back asleep. So I might come right back down and continue this post. I'm hoping that this really is the end. Good night.
Saturday, January 03, 2009
I have about four different posts running around in my head. They're all excellent (but of course) but I have too much to do to even be fooling around with my blog in the first place, so they will have to wait. Here's the quickest update I can manage:
1) DH - health is fine (now I must spit between two fingers to avoid a kinahera)
2) Kids got a Wii for the holidays plus many many many Legos.
3) Kids are now able to play independently with said presents for extended periods of time.
4) Preschool Director got fired; I am now the Interim Preschool Director.
5) I am in a tough position trying to stay positive at school and focus on the present when many, many, many others want to focus on the details surrounding the change in administration.
6) I am also still teaching my 2-year-old class from 9-12. And Hebrew School twice a week. And Religious School on Sundays (two sessions).
7) The full-day kindergarten is no longer an option for next year. It is a goal for the near future.
8) The camp will (HOPEFULLY) be approved very soon so we can start registering families. I have been working with the Board to make it a reality.
9) I spent much of winter break at school organizing paperwork/files and sorting/organizing books and supplies with the help of fabulous volunteers.
10) I'm trying to remember to breathe.