Gearing Up

So much to do and I'm just so unmotivated to do it.

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.

Not so fast with this feeling good stuff!

I tried to take it easy. I felt well enough to move around without clutching the cute little pillow the night nurse (who really should be working days because he just talked WAY too much each and every time he came in my room at night to check my vitals) made me at the hospital. I could even walk without being hunched over. That's progress, baby!

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.

Streamlining Cleaning

No matter what I do the house ends up getting dirty again. I know, I know, there are five people that live here, of course it's going to get dirty. But I keep trying to come up with some system that will somehow make it stay uncluttered. And no matter how good my intentions are, it never gets that way or even if it did get close, it never stays that way. I think I'm just too lazy.

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.

And what can I learn from this?

I got the message on Friday that DH was not doing well and needed me to come home right after camp. His latest relapse started on Tuesday when he decided it would be a good idea to take the boys to the Franklin Institute. He only lasted two hours before he started limping and slurring his words. But on Friday a new symptom began: his eyes stopped moving from side to side. Since I now have my medical degree from Google, and have watched enough neurological exams to consider myself an honorary neurologist, I began doing a basic exam. When I asked DH to follow my finger, I saw that his eye were no longer tracking smoothly. Instead of following my finger like I expected, they moved in an extremely jerky motion, sometimes not even looking at my finger. At that point we decided to head to the ER.

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.

Streamline

Welcome back!



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 over a month.



Oh.



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!

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?

Question

What if this is our new normal?

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.

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.

Guess Who Has Their Own Blog?

My husband!

Please check it out and show him some love.

No News is . . . No News

Newflash ...................



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!

Wishing and Hoping and Praying and Thinking . . .

I wish I remembered to bring my coat with me tonight.

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!

Taking Advantage of the Day

My head no longer pounds.
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!

Want some cheese with that?

Five minutes after I published my last post, my fabulous friend emailed that she would be bringing over dinner tomorrow. Not only did she bring over dinner for that night, she clearly raided her fridge and brought us half an apple pie. That's a good friend. :)

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.