There have been a lot of visits to Firecracker's Caringbridge page recently. Dear Husband alerted me to the sudden boost in traffic, and I know that many of you RevGals have been there to visit. Thank you so much for your prayers. I've been amazed at the love shown to us.
My posting has been sluggish. I suppose I've lost some of the fun of it. My energy has flagged. I've exhausted much of my good humor.
Certainly not everything has been dreary--not by a long shot. Christmas was wonderful. DramaQueen had a lovely birthday party, and a friend and I are planning a pirate party for Firecracker--there will even be a treasure hunt. It snowed one day and we all went outside and had a snowball fight. That was one of the best days, one of the most purely happy days I've known of late. My friend is also organizing a logistical chart to coordinate help during Firecracker's hospital stay, as well as rounding up my coworkers to make posters and create fun diversions for her.
I'm home sick today. That gives me the chance to rest in more ways than one. Last night I woke up terribly frightened. I wasn't awake enough to sort out what I was afraid of, but my muscles were tensed and my heart racing. I need a rest from such moments. I need a rest from trying hard to focus and concentrate. No wonder I caught the flu or whatever it is. My brain has worn itself out. So I'm grateful even to be sick right now, because I can rest and just look out at the sunshine from the sanctuarly of my bed.
Thanks again, everyone.
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
Friday, January 25, 2008
Sunday, August 26, 2007
Caring Bridge
8/27 update:
Sorry to anyone who tried to click on the link--I put in an errant period. I've corrected this and tested it and it's now working. Thanks, everyone.
I've decided to out myself so that I can direct everyone to Firecracker's Caring Bridge site. We'll post updates about her and you can sign our guest book. Just go here: http://www.caringbridge.org/visit/abbyswartz.
I am also posting a new video. It has the same pictures, but it also tells you those who didn't survive, and it has the contact information for the TS Alliance.
Thank you to everyone who has left messages of encouragement. I know many of you are praying for us, and we are so grateful.
Sorry to anyone who tried to click on the link--I put in an errant period. I've corrected this and tested it and it's now working. Thanks, everyone.
I've decided to out myself so that I can direct everyone to Firecracker's Caring Bridge site. We'll post updates about her and you can sign our guest book. Just go here: http://www.caringbridge.org/visit/abbyswartz.
I am also posting a new video. It has the same pictures, but it also tells you those who didn't survive, and it has the contact information for the TS Alliance.
Thank you to everyone who has left messages of encouragement. I know many of you are praying for us, and we are so grateful.
Saturday, August 25, 2007
The Faces of TSC
I'm worn out and don't have much to say. There's no news, really. I have my second surgery on Friday, but it won't be nearly as difficult as the previous one. In October there is a Tuberous Sclerosis regional conference here in Atlanta, and we will go to that for a crash course. Here is a video called The Faces of TSC that we found on YouTube. It seems you can find anything there. There's even a message about TSC from Julianne Moore, but I think this one is more interesting.
Tuesday, August 07, 2007
More Medical Mysteries
So, Firecracker spent last week in the hospital hooked up to an EEG and confined to the area of her bed covered by a video camera. We had to deprive her of sleep, drop her meds, and keep her off food and water between 8 am and 3 pm every day. She has had seizures since age one, and she had an MRI at that time that did not reveal anything. Her MRI this time, however, showed lesions. The goal with the hospital stay was not just to record her seizures but to catch her in one, shoot her full of dye, and wheel her in for a contrast MRI. She also had a CT scan and will have another MRI next Monday. Then the epilepsy team at the hospital will confer and decide what course of treatment we should pursue. It took the whole blessed week for them to catch her at the right time.
One of the concerns is that she may have something called Tuberous Sclerosa, which is a genetic disease that causes benign tumors to grow in the brain and other organs. This would be a very discouraging diagnosis, since there is no cure for Tuberous Sclerosa, and it’s impossible to predict what impact it will have. So, because she doesn’t have any skin markings associated with TSC, she will have a special test done to determine if she has the genetic markers. If it’s not TSC, it could be scar tissue from a brain bleed, or it could even be related to celiac disease (the doctor ordered labs to determine if she is gluten intolerant). Whatever it is, the lesions are placed in areas responsible for language, mood control and executive function, and that tells me there’s a long, difficult road ahead.
Needless to say, last week was just awful. Added to that, my MIL came into town to help and ended up alienating the nurses and doctors. She told the neuropsychologist that she didn’t believe in IQ tests while he was trying to evaluate Firecracker, and she generally tried the patience of everyone by being bossy and demanding. She came with the best intentions, to be helpful, but she is really not at her best when over-tired. She has a tendency to parent my children that I find really annoying. But I’m not very good at maintaining firm boundaries, as Dear Husband is always pointing out. She also seems to have fed Firecracker nothing but sugar during the entire hospital stay. I am now working on getting her to forget that glazed donuts exist. Ironically, MIL got uptight when I was going to let Firecracker have a second piece of sugarless gum (one of her parenting on my behalf moments). Gum – donuts. Call me crazy, but I prefer a stick of fake sweetness to a ring of lard coated in sugar. Well, actually, I adore donuts, but I don’t think I need to encourage that in my offspring.
One of the concerns is that she may have something called Tuberous Sclerosa, which is a genetic disease that causes benign tumors to grow in the brain and other organs. This would be a very discouraging diagnosis, since there is no cure for Tuberous Sclerosa, and it’s impossible to predict what impact it will have. So, because she doesn’t have any skin markings associated with TSC, she will have a special test done to determine if she has the genetic markers. If it’s not TSC, it could be scar tissue from a brain bleed, or it could even be related to celiac disease (the doctor ordered labs to determine if she is gluten intolerant). Whatever it is, the lesions are placed in areas responsible for language, mood control and executive function, and that tells me there’s a long, difficult road ahead.
Needless to say, last week was just awful. Added to that, my MIL came into town to help and ended up alienating the nurses and doctors. She told the neuropsychologist that she didn’t believe in IQ tests while he was trying to evaluate Firecracker, and she generally tried the patience of everyone by being bossy and demanding. She came with the best intentions, to be helpful, but she is really not at her best when over-tired. She has a tendency to parent my children that I find really annoying. But I’m not very good at maintaining firm boundaries, as Dear Husband is always pointing out. She also seems to have fed Firecracker nothing but sugar during the entire hospital stay. I am now working on getting her to forget that glazed donuts exist. Ironically, MIL got uptight when I was going to let Firecracker have a second piece of sugarless gum (one of her parenting on my behalf moments). Gum – donuts. Call me crazy, but I prefer a stick of fake sweetness to a ring of lard coated in sugar. Well, actually, I adore donuts, but I don’t think I need to encourage that in my offspring.
Wednesday, July 25, 2007
Stopping by to chat
I’ve been too busy at work and too annoyed with my computer at home to blog. And I just got the new Harry Potter book, so you may not hear from me at all until that’s done.
Last weekend we went to Savannah. I grew up in Georgia, but I had never seen Savannah. I thought this needed to be rectified. Now I’ve decided that we should pack up and move there.
It’s so durn pretty, and there’s a beach that isn’t wall to wall hotels and beautiful renovated Victorian houses and the streets are laid out around squares. The old town is prettiest, of course. Like everywhere else the suburbs are bloated with new developments, Wal-Marts and B&Ns and such. But it was still a blast. I particularly enjoyed the beach, and I’m not a beach person. We were lucky to have mild weather and to get there before the crowds. Tybee Island is very low key and there are no high-rises—-just ramshackle little bungalows. I’m not a fan of the Atlantic, but I got past comparing it with the sugary sand and clear blue water of the Gulf.
That was one of the high points. The other is that Dear Husband’s immune system appears to have righted itself. The doctor thinks that once he started the gluten free diet, it took the stress off his T cells or whatever they are.
My doc put me on a bit of Prozac to drag me out of the pit. It is making me very very hungry. The kind of hungry that's right next door to nausea. Next week Firecracker goes into the hospital for a video EEG. We have to decrease her meds so that she’ll have lots of seizures for the doctors. I am not looking forward to that.
I recently looked at our budget and discovered that we spent $800 on medical expenses last month. Ouch.
Last weekend we went to Savannah. I grew up in Georgia, but I had never seen Savannah. I thought this needed to be rectified. Now I’ve decided that we should pack up and move there.
It’s so durn pretty, and there’s a beach that isn’t wall to wall hotels and beautiful renovated Victorian houses and the streets are laid out around squares. The old town is prettiest, of course. Like everywhere else the suburbs are bloated with new developments, Wal-Marts and B&Ns and such. But it was still a blast. I particularly enjoyed the beach, and I’m not a beach person. We were lucky to have mild weather and to get there before the crowds. Tybee Island is very low key and there are no high-rises—-just ramshackle little bungalows. I’m not a fan of the Atlantic, but I got past comparing it with the sugary sand and clear blue water of the Gulf.
That was one of the high points. The other is that Dear Husband’s immune system appears to have righted itself. The doctor thinks that once he started the gluten free diet, it took the stress off his T cells or whatever they are.
My doc put me on a bit of Prozac to drag me out of the pit. It is making me very very hungry. The kind of hungry that's right next door to nausea. Next week Firecracker goes into the hospital for a video EEG. We have to decrease her meds so that she’ll have lots of seizures for the doctors. I am not looking forward to that.
I recently looked at our budget and discovered that we spent $800 on medical expenses last month. Ouch.
Sunday, June 03, 2007
God, what are you thinking?
This is one of those times when my patience is tested. I think as a family we've been through quite a lot in the past few years. But, no, there's still more. Dear Husband has recurrent sinus infections, which landed him at the ENT. The ENT found polyps and a deviated septum, but he also referred Dear Husband to an immunologist, because he has stopped responding to oral antibiotics. The immunologist took 6 vials of blood and ran every test imaginable.
The upshot is that Dear Husband has some sort of auto-immune disease, the exact nature of which is still to be determined. He's not making enough IGg or some such. The treatment for this is monthly IVs of gammaglobulin or whatever the stuff is.
He also has celiac disease. We've been kind of wondering about that possibility for a while, and his primary care doctor had a test run that came up negative. The immunologist, however, found several indicators (anemia and other nutritional deficits, IBS, lactose intolerance and other measures)and said the best indicator of all is how Dear Husband feels when he eats wheat.
Could life get any more complicated? Our family looks like this:
Me:
ductal carcinoma in situ, mastectomy and reconstruction, possible tamoxifin therapy for 5 years.
bipolar II
Firecracker:
Hypothyroidism
Epilepsy
Asthma
Reflux
learning delays
Dear Husband:
Interstitial Cystitis
Irritable Bowel Syndrome
Primary immunodeficiency
Celiac disease
The only healthy person in this family is DramaQueen.
But, hey, I found out that Outback has a gluten-free menu, and we have a gift card. I guess some provision has been made.
So, God, enough already.
Oh, did I mention that having primary immunodeficiency completely destroys Dear Husband's dreams of becoming a nurse, a career he has set his sights on for the past few years?
The upshot is that Dear Husband has some sort of auto-immune disease, the exact nature of which is still to be determined. He's not making enough IGg or some such. The treatment for this is monthly IVs of gammaglobulin or whatever the stuff is.
He also has celiac disease. We've been kind of wondering about that possibility for a while, and his primary care doctor had a test run that came up negative. The immunologist, however, found several indicators (anemia and other nutritional deficits, IBS, lactose intolerance and other measures)and said the best indicator of all is how Dear Husband feels when he eats wheat.
Could life get any more complicated? Our family looks like this:
Me:
ductal carcinoma in situ, mastectomy and reconstruction, possible tamoxifin therapy for 5 years.
bipolar II
Firecracker:
Hypothyroidism
Epilepsy
Asthma
Reflux
learning delays
Dear Husband:
Interstitial Cystitis
Irritable Bowel Syndrome
Primary immunodeficiency
Celiac disease
The only healthy person in this family is DramaQueen.
But, hey, I found out that Outback has a gluten-free menu, and we have a gift card. I guess some provision has been made.
So, God, enough already.
Oh, did I mention that having primary immunodeficiency completely destroys Dear Husband's dreams of becoming a nurse, a career he has set his sights on for the past few years?
Saturday, May 26, 2007
How I Spent My Birthday
First I went to see the oncologist. My surgeon referred me because the ductal carcinoma they examined was hormone responsive. So I have to consider taking tomoxifin, which blocks estrogen. The oncologist told me there was a huge European study that showed no benefits and a huge American study that showed significant benefits. The risk of recurrence for me is small, but tomoxifin would cut that risk in half. So I have some thinking to do.
Second stop was my primary care physician, because I have a sinus infection. Again. If this keeps up I'll have to see an allergist, or an ENT, or something. Dear Husband has seen and ENT and needs surgery, but the ENT referred him to an immunologist, who drew six vials of blood and is testing him for every auto-immune disorder known to man, because he thinks Dear Husband has an auto-immune disorder triggered by the environment. I don't want to think about what direction we would have to take if they did find such a thing. Dear Husband wonders if we should move to Colorado Springs.
Side note: My doctors are very good-looking. It's kinda distracting.
Then on to summer camp to drop off paperwork. We had lunch in there somewhere, and we were taking a nap when the auto repair shop called to tell us that the repair to Dear Husband's car would cost $800 because Mazda would have special order it from Japan. The think this will fix the problem.
Despite all this, Dear Husband still brought home an ice-cream cake for me. Sweetie. But we are now faced with a bad car situation. We do not have $800 to repair the car, this after paying $300 previously for what they thought would fix it. And what next? More problems, more repairs? Our best chance is to roll our current upside-down note into the purchase of another car.
Isn't that pathetic? Because we can't pay for a repair, we have to trade in for another car, because that's the only credit we have at the moment. And our credit rating is only fair. And we have to buy it this weekend, because Dear Husband's car will eventually just not start. Dear Husband managed to find a good deal, and now I'm waiting the dreaded call to go sign off on the paperwork. He signed off on his part yesterday, so this is supposed to be simple. Right.
But this weekend he took me to an Ethiopian restaurant for dinner. Ethiopian cuisine is one of my favorites and I was in heaven. The two Ethiopian beers helped, too.
Today Dear Husband is off with the girls watching Shrek III, and I'm trying to finish up editing a children's book on the Little Rock Nine. More about that later, perhaps, since it got me thinking. But I keep getting distracted by YouTube, where I go to watch clips of tango dancing. Really, my mind jumps around a lot lately.
Second stop was my primary care physician, because I have a sinus infection. Again. If this keeps up I'll have to see an allergist, or an ENT, or something. Dear Husband has seen and ENT and needs surgery, but the ENT referred him to an immunologist, who drew six vials of blood and is testing him for every auto-immune disorder known to man, because he thinks Dear Husband has an auto-immune disorder triggered by the environment. I don't want to think about what direction we would have to take if they did find such a thing. Dear Husband wonders if we should move to Colorado Springs.
Side note: My doctors are very good-looking. It's kinda distracting.
Then on to summer camp to drop off paperwork. We had lunch in there somewhere, and we were taking a nap when the auto repair shop called to tell us that the repair to Dear Husband's car would cost $800 because Mazda would have special order it from Japan. The think this will fix the problem.
Despite all this, Dear Husband still brought home an ice-cream cake for me. Sweetie. But we are now faced with a bad car situation. We do not have $800 to repair the car, this after paying $300 previously for what they thought would fix it. And what next? More problems, more repairs? Our best chance is to roll our current upside-down note into the purchase of another car.
Isn't that pathetic? Because we can't pay for a repair, we have to trade in for another car, because that's the only credit we have at the moment. And our credit rating is only fair. And we have to buy it this weekend, because Dear Husband's car will eventually just not start. Dear Husband managed to find a good deal, and now I'm waiting the dreaded call to go sign off on the paperwork. He signed off on his part yesterday, so this is supposed to be simple. Right.
But this weekend he took me to an Ethiopian restaurant for dinner. Ethiopian cuisine is one of my favorites and I was in heaven. The two Ethiopian beers helped, too.
Today Dear Husband is off with the girls watching Shrek III, and I'm trying to finish up editing a children's book on the Little Rock Nine. More about that later, perhaps, since it got me thinking. But I keep getting distracted by YouTube, where I go to watch clips of tango dancing. Really, my mind jumps around a lot lately.
Sunday, May 20, 2007
Candy Crisis Averted
I finally found some nice Brazilian woman's recipe that made some modifications and cleared up something. I guess in Brazil, Nesquick is just cocoa powder, not the noxious drink we stir up for our kiddies. With real cocoa, a microwave, and a touch of cornstarch (bless you lady, wherever you are--you're a genius), I was able to whip up the brigadeiros and DramaQueen sold every last one of them. They were using "Brazilian bucks," so I'm not sure what benefit that was to us. But it's done.
And now the shocker--school's out on Wednesday. I had completely forgotten this, despite getting the notice of Firecracker's "moving up" ceremony and the other various notices and warnings. It was the packet from summer camp that finally put me in my right mind. And reminded me that there's a gap of two days between when school ends and camp starts. Why--are the public schools and daycare in cahoots? I have a list of items to purchase for camp (and this isn't sleepaway camp) and all sort of forms to fill out, and I'll have to get the uncooperative pediatrician to print out the immunization forms (they can't be bothered to fax them). When did I think I would do all this? I haven't even asked if I can take the morning for Firecracker's ceremony.
And on my birthday, I get to visit the oncologist, to see if I need to be on something nasty to keep these hormone receptive cells from appearing in the other breast. I also have a sinus infection and my right side hurts when I sleep. My doctor has me doing "nasal irrigation" which although it isn't painful is really weird. It would be nice if the oncologist could do double duty and prescribe an antibiotic while I'm there.
On the positive side, and something I forgot to mention while I was in the land of percoset and valium, DramaQueen gave Dear Husband a hand-made birthday card that began: "Dear Old Person".
And now the shocker--school's out on Wednesday. I had completely forgotten this, despite getting the notice of Firecracker's "moving up" ceremony and the other various notices and warnings. It was the packet from summer camp that finally put me in my right mind. And reminded me that there's a gap of two days between when school ends and camp starts. Why--are the public schools and daycare in cahoots? I have a list of items to purchase for camp (and this isn't sleepaway camp) and all sort of forms to fill out, and I'll have to get the uncooperative pediatrician to print out the immunization forms (they can't be bothered to fax them). When did I think I would do all this? I haven't even asked if I can take the morning for Firecracker's ceremony.
And on my birthday, I get to visit the oncologist, to see if I need to be on something nasty to keep these hormone receptive cells from appearing in the other breast. I also have a sinus infection and my right side hurts when I sleep. My doctor has me doing "nasal irrigation" which although it isn't painful is really weird. It would be nice if the oncologist could do double duty and prescribe an antibiotic while I'm there.
On the positive side, and something I forgot to mention while I was in the land of percoset and valium, DramaQueen gave Dear Husband a hand-made birthday card that began: "Dear Old Person".
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