I feel like I've been percolating some coffee in my head since the middle of the night last night. Really. I finally just got up because it was just so loud I couldnt sleep anymore.
I have a hard time figuring out what is "big enough" to call the doctor about and what isn't. Like, the fact that I was up half the night because I feel like coffee is brewing in my head/ears? or is that "just part of the disease"? PFfff.
At least today is a tumbles day, so Joey will have fun and get worn out, and hopefully take a good nap afterwards and I can have some quiet (I mean, only coffee percolating time). Haha. Versus, right now, coffee percolating + Joey + dog + tv + dry moving + this annoying noise my fingers make typing... Hmmmmmmm. Yeah only coffee percolating sounds nice.
Monday, February 22, 2010
Friday, February 19, 2010
Good news, bad news
So my good news is that on Monday I found out that I won't need surgery for now! Yay.
Bad news, my right eye vision is extremely "constricted" and I really can only see looking straight ahead from that eye. this is frustrating for me, on so many levels. But, the swelling of my optic nerve has actually improved some, which is a relief, so that's something.
I've had a few rough days of not feeling so hot. Joey's been sick with a cold and cranky and clingy (understandably). I've been having alot of ear pressure from the PTC, which makes me off balance and also gives me alot of nausea. So cranky kid, plus me being extra sensitive to well, everything, is making things a bit tough. My hand goes in phases it seems. The bracing IS helping overall, but there are times it still really hurts or the opposite side starts to hurt instead. Rob's not been feeling well too, still having chest and neck pain, and also thinks he is getting what Joey has. But we'll get through it!
I got a card from our priest in the mail yesterday, saying he was praying for us. I *knew* they were, but the visual to put on my shelf is extra comforting.
I finally heard back from Dr. R's office, who I have been calling, well, forever, about my blood work results. But, I missed their call (I was resting) and I have not been able to get ahold of anyone since - just leave messages. Go freaking figure. Somebody just tell me if you're going to give me the drug or not and I'll bug off!
I've been trying to cut back on computer screen time significantly to see if the lack of strain will help me feel better. I decided sort of at the last moment to give up facebook and chatting (with the exception of work chat) for Lent. Probably for the best, considering it's made me bored with the computer and made me step away and as a result get more eye rest :)
We took this photo on valentines day, earlier this week, and I really noticed that the difference in the swelling in my face is amazing. Not the best comparison - I tried to find one at the same angle - but look at my face especially, the shape is really remarkably different. I think the PTC was really consuming me physically alot more than I realized.
We took Joey to losco park on valentines day, and it was COLD because that park is shaded. But he had a blast. :)
Oh, and the biggest frustration now is we went to the office to finalize moving into a bigger unit, and now they want us to pay almost 1100 a month, which is absolutely insane for a 2 bdroom. At just over 900, it was doable before, but I'm really not interested in living in a 2 bdroom apt for 1100 dollars when we could rent a nice house for that. The intention was to SAVE money and to upgrade our space. Not spend more. So, now we're on the look again. Under pressure, too, because we have to give 60 days notice by March 1 as per our lease. The whole deposit/application/dog fee situation stresses me out so bad when thinking of moving too. We may end up giving notice without a place to live. Which I hate, hate, hate to do! But there is no way I am going to pay "market rent" for this apartment on a month to month basis (almost 1200!!)
And my house is a mess. And I cant do anything about it. All the bending + head shocks is not my idea of a fun time. Oh, and I did mention these things to the doctor - in addition to my memory loss - and his answer was that it is "just part of the disease". I asked about the chances of regaining my right eye vision and he said I should. "only 5%" go completely blind in one eye. So I'm hoping I'm not in that 5%!
So some good news this time :) Which is an improvement!! :)
Bad news, my right eye vision is extremely "constricted" and I really can only see looking straight ahead from that eye. this is frustrating for me, on so many levels. But, the swelling of my optic nerve has actually improved some, which is a relief, so that's something.
I've had a few rough days of not feeling so hot. Joey's been sick with a cold and cranky and clingy (understandably). I've been having alot of ear pressure from the PTC, which makes me off balance and also gives me alot of nausea. So cranky kid, plus me being extra sensitive to well, everything, is making things a bit tough. My hand goes in phases it seems. The bracing IS helping overall, but there are times it still really hurts or the opposite side starts to hurt instead. Rob's not been feeling well too, still having chest and neck pain, and also thinks he is getting what Joey has. But we'll get through it!
I got a card from our priest in the mail yesterday, saying he was praying for us. I *knew* they were, but the visual to put on my shelf is extra comforting.
I finally heard back from Dr. R's office, who I have been calling, well, forever, about my blood work results. But, I missed their call (I was resting) and I have not been able to get ahold of anyone since - just leave messages. Go freaking figure. Somebody just tell me if you're going to give me the drug or not and I'll bug off!
I've been trying to cut back on computer screen time significantly to see if the lack of strain will help me feel better. I decided sort of at the last moment to give up facebook and chatting (with the exception of work chat) for Lent. Probably for the best, considering it's made me bored with the computer and made me step away and as a result get more eye rest :)
We took this photo on valentines day, earlier this week, and I really noticed that the difference in the swelling in my face is amazing. Not the best comparison - I tried to find one at the same angle - but look at my face especially, the shape is really remarkably different. I think the PTC was really consuming me physically alot more than I realized.
We took Joey to losco park on valentines day, and it was COLD because that park is shaded. But he had a blast. :)
Oh, and the biggest frustration now is we went to the office to finalize moving into a bigger unit, and now they want us to pay almost 1100 a month, which is absolutely insane for a 2 bdroom. At just over 900, it was doable before, but I'm really not interested in living in a 2 bdroom apt for 1100 dollars when we could rent a nice house for that. The intention was to SAVE money and to upgrade our space. Not spend more. So, now we're on the look again. Under pressure, too, because we have to give 60 days notice by March 1 as per our lease. The whole deposit/application/dog fee situation stresses me out so bad when thinking of moving too. We may end up giving notice without a place to live. Which I hate, hate, hate to do! But there is no way I am going to pay "market rent" for this apartment on a month to month basis (almost 1200!!)
And my house is a mess. And I cant do anything about it. All the bending + head shocks is not my idea of a fun time. Oh, and I did mention these things to the doctor - in addition to my memory loss - and his answer was that it is "just part of the disease". I asked about the chances of regaining my right eye vision and he said I should. "only 5%" go completely blind in one eye. So I'm hoping I'm not in that 5%!
So some good news this time :) Which is an improvement!! :)
Friday, February 12, 2010
Seriously?!
I feel like someone is poking and prodding at my life, and laughing a full bellied laugh at me today. I've literally tripped and fallen on my face 5 times today, and unlike the other day, this time, the dog is smart enough to move out of the way and not let me use her as my giant falling cushion.
It started out okay. We cancelled a JAXNPP meeting with the area leaders last night because so many kidlets were sicks. Which, considering the rain, and how much my head has hurt in the last 48 hours, was really a blessing. I woke up feeling not so bad headache wise, and decided to try to get all of my brain activities done as early as I could while I felt okay. Got my work done. Got my postings to JAXNPP subforum for area leaders done (Rob had helped me type them last night, so I just had to copy/paste). Made Joey breakfast. And by breakfast, I mean toast and fresh squeezed juice, and myself fresh squeezed juice. Much more than that would've been agony. Joey for the most part cooperated, though, watched way more tv than I would like on a normal day but no day has been "normal" lately.
Got done, and we took the dog out and made a rain party out of it. I was sure glad I got Joey that rain poncho at a consignment shop recently for $2.
Then I made lunch for Joey. almond butter and jelly sandwiches, heart shape style. I swore I'd never be the mom who cuts off the crust for their kid, but my mom got him a cut cutter and he really adores it. So I did it. Snapped a photo. He ate the crust, too. Made me feel better ;) He ate THREE sandwiches and an orange and some hemp milk. Must've been pretty crappy sandwiches.
Then, he napped. He fought me about it, but he went down within 20 minutes and slept for 3 hours. Bliss. Except, here I was sitting on the bed and my bliss was interrupted. I got an email from my work. MISTAKES. MISTAKES. MISTAKES. Not just mistakes, but CLIENT FOUND MISTAKES. The worst kind. They didnt necessarily effect patient care, it was a date error. But it was on MULTIPLE FILES. This is the first major mistake I've made since graduating. Ever. I don't make mistakes like this. My memory has been going, going, gone lately and I've been catching myself making more and more mistakes while working. Evidently, there are some going out that I am not catching too. That, seriously breaks my heart. I understand that this is a job where 99% accuracy is expected. And really, I was pretty good at maintaining it until my body decided to go psycho on me and start overproducing spinal fluid and squeezing the hell out of my brain and making me stupid. I feel so ridiculously stupid for making these mistakes. And really, I'm 100% harder on myself than my company was. It just really breaks my heart to be making errors like this, it is not the person I am or was, I guess. It's good that I have cut down on the amount of work, but if I can't keep up quality even in small amounts, I don't know what I will do.
And sometime after making lunch, my head started to pound again. I get this pounding/wooshing in my ears from the fluid and its torture. Lately, I've also been having these shocking pains in my brain. I feel like its a brain zap or something. But if I stand up to quick, turn quickly, step on a toy, bend over to pick up a toy, basically anything that requires movement, I get this horrible shock in my head. Usually the top of my head, sometimes the back. they HURT and literally make me cry sometimes. I'm so frustrated to not be able to clean up! But really, what it ends me up doing, is sitting my butt in one place (couch, bed) and not moving. And being the most worthless mother ever.
So, on monday I was diagnosed with De Quervains Tenosynovitis of my left hand. It has been hurting for about 2 weeks, and I thought maybe I had broken it from the way the medicine sucks water out of my bones, but it turns out its tendon inflammation. (and no, I dont use this part of my hand to type). Anyway, I still dont have a brace for it that my doctor prescribed. rob was supposed to get off early today to do it, but I just got a phone call from him, that he is in the ER. His boss said he looked pale, and his chest hurt and he was dizzy/faint. So. . . I am not getting my brace today, which I was really counting on, to at least relieve THIS part of my pain. And my husband is in the hospital with super high blood pressure (again) and they do not know what is causing it (again).
And the right side of my face is swollen like crazy and I look like some weird half tortured cartoon character.
And my house is a mess and I cant clean it without getting zapped in the brain and I dont want to cook dinner for like reasons. And the way today has turned out, I'm afraid to order out. Probably my go-to corn free places will magically add corn just for tonight to torture me or something. And I have no idea if my husband is okay and when he will be home and I just need him here to give me a break.
And, just so I don't have to end on a mad grumpy note, I'll add a pic of Joey making (eating) cookies from last week.
The reality is though, I'll put a smile on my face and keep on going the best I can because I have to for Joey. BTW, my big appointment with the neuroopthamologist is monday.
It started out okay. We cancelled a JAXNPP meeting with the area leaders last night because so many kidlets were sicks. Which, considering the rain, and how much my head has hurt in the last 48 hours, was really a blessing. I woke up feeling not so bad headache wise, and decided to try to get all of my brain activities done as early as I could while I felt okay. Got my work done. Got my postings to JAXNPP subforum for area leaders done (Rob had helped me type them last night, so I just had to copy/paste). Made Joey breakfast. And by breakfast, I mean toast and fresh squeezed juice, and myself fresh squeezed juice. Much more than that would've been agony. Joey for the most part cooperated, though, watched way more tv than I would like on a normal day but no day has been "normal" lately.
Got done, and we took the dog out and made a rain party out of it. I was sure glad I got Joey that rain poncho at a consignment shop recently for $2.
 |
| From February 2010 |
Then I made lunch for Joey. almond butter and jelly sandwiches, heart shape style. I swore I'd never be the mom who cuts off the crust for their kid, but my mom got him a cut cutter and he really adores it. So I did it. Snapped a photo. He ate the crust, too. Made me feel better ;) He ate THREE sandwiches and an orange and some hemp milk. Must've been pretty crappy sandwiches.
 |
| From February 2010 |
Then, he napped. He fought me about it, but he went down within 20 minutes and slept for 3 hours. Bliss. Except, here I was sitting on the bed and my bliss was interrupted. I got an email from my work. MISTAKES. MISTAKES. MISTAKES. Not just mistakes, but CLIENT FOUND MISTAKES. The worst kind. They didnt necessarily effect patient care, it was a date error. But it was on MULTIPLE FILES. This is the first major mistake I've made since graduating. Ever. I don't make mistakes like this. My memory has been going, going, gone lately and I've been catching myself making more and more mistakes while working. Evidently, there are some going out that I am not catching too. That, seriously breaks my heart. I understand that this is a job where 99% accuracy is expected. And really, I was pretty good at maintaining it until my body decided to go psycho on me and start overproducing spinal fluid and squeezing the hell out of my brain and making me stupid. I feel so ridiculously stupid for making these mistakes. And really, I'm 100% harder on myself than my company was. It just really breaks my heart to be making errors like this, it is not the person I am or was, I guess. It's good that I have cut down on the amount of work, but if I can't keep up quality even in small amounts, I don't know what I will do.
And sometime after making lunch, my head started to pound again. I get this pounding/wooshing in my ears from the fluid and its torture. Lately, I've also been having these shocking pains in my brain. I feel like its a brain zap or something. But if I stand up to quick, turn quickly, step on a toy, bend over to pick up a toy, basically anything that requires movement, I get this horrible shock in my head. Usually the top of my head, sometimes the back. they HURT and literally make me cry sometimes. I'm so frustrated to not be able to clean up! But really, what it ends me up doing, is sitting my butt in one place (couch, bed) and not moving. And being the most worthless mother ever.
So, on monday I was diagnosed with De Quervains Tenosynovitis of my left hand. It has been hurting for about 2 weeks, and I thought maybe I had broken it from the way the medicine sucks water out of my bones, but it turns out its tendon inflammation. (and no, I dont use this part of my hand to type). Anyway, I still dont have a brace for it that my doctor prescribed. rob was supposed to get off early today to do it, but I just got a phone call from him, that he is in the ER. His boss said he looked pale, and his chest hurt and he was dizzy/faint. So. . . I am not getting my brace today, which I was really counting on, to at least relieve THIS part of my pain. And my husband is in the hospital with super high blood pressure (again) and they do not know what is causing it (again).
And the right side of my face is swollen like crazy and I look like some weird half tortured cartoon character.
And my house is a mess and I cant clean it without getting zapped in the brain and I dont want to cook dinner for like reasons. And the way today has turned out, I'm afraid to order out. Probably my go-to corn free places will magically add corn just for tonight to torture me or something. And I have no idea if my husband is okay and when he will be home and I just need him here to give me a break.
And, just so I don't have to end on a mad grumpy note, I'll add a pic of Joey making (eating) cookies from last week.
 |
| From February 2010 |
The reality is though, I'll put a smile on my face and keep on going the best I can because I have to for Joey. BTW, my big appointment with the neuroopthamologist is monday.
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