Sunday, May 24, 2009

Juggling Lessons

My husband's crooked smile might be permanent.

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...
  1. DH's health
  2. Teaching
  3. The school
  4. Our finances
  5. J
  6. A
  7. B
  8. Paperwork
  9. Housework
  10. My own health (really have to start focusing on that more!)
  11. Summer work (two different camps)
  12. 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


What if this is our new normal?

Friday, May 08, 2009

Any Dr. House Wannabes Out There?

Let's see what you can come up with!

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

As I drove home from HUP tonight, I tried thinking of a humerous way to write about this, a cute title to put on this post.

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.

Another Day, Another ER

Why stick with left sided hemiparesis when you can add in the right side too? C'mon, after our trip to Hopkins last week at which yet another neurologist shrugged his shoulders and told us he has no idea what's causing all the trouble, we had to figure out a way to step it up a notch. I am now with DH in one of HUP's ER exam rooms. We just came from MRI where first yet another neurologist examined him and then he got yet another MRI and MRA. Based on past experience, we are now waiting for them to come back and tell us that everything looking normal on the scans, so despite the scary new symptoms and severe pain (they just gave him morphine in his IV because his head and right arm/hand hurt so bad) they're going to send us home. Yet again.