Sunday, April 26, 2009

Guess Who Has Their Own Blog?

My husband!

Please check it out and show him some love.

Friday, April 24, 2009

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!

Wednesday, April 22, 2009

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!

Sunday, April 05, 2009

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!

Saturday, April 04, 2009

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.