Monday, September 29, 2008
And inevitably, it involves either my husband or my daughter, or both.
This time, it's my husband.
We had a typical weekend, in other words way too much activity for me. Sunday was particularly bad because even though Ellie went on a playdate at someone else's house that we didn't have to attend (yay!), there was much to be done at home before picking Ellie up and taking her to a birthday party for a classmate.
Essentially, I helped Scott bake challah to bring with tonight for an erev Rosh Hashana dinner some friends invited us to, while he tried to get a new shrub planted, which also involved pruning a nearby tree and digging up the mostly dead smoke tree the shrub (a Rose of Sharon) was replacing. My job was essentially to get the oven turned on at a specific time after giving the dough time to rise in the oven, and then letting Scott know when the challah had been in the oven for 20 minutes so he could come check it. Not too physically taxing in any sense, but it did mean that I couldn't go take a nap that I needed. (We both really wanted to get the shrub planted so it didn't have to spend another week wilting on our patio in a small pot.)
Then the birthday party was at a pretty cool park, but instead of the rain the parents throwing the party feared, we ended up with 90 degree temps and lots of sun. And I tend to wilt under those conditions.
By the time we got home at 5 p.m., I felt like a zombie. We'd stopped for food on the way home because somehow, Ellie had missed lunch. (So had I, but she felt it worse.) So we had a very early dinner, or a "linner" after the party.
Sunday nights are plenty busy with getting everyone ready for the work/school week and gathering trash and recyclables for pickup at 6 a.m. Monday. (And yes, we must be at the beginning of their route, because they really do show up between 6 and 7 a.m.)
But I mumbled something about really needing to go to bed, so could Scott please do what he needed to get done without supervising Ellie so I could go upstairs. He told me to go, but I tried to insist that he still needed some help.
So he firmly told me to go. Right. Now.
And I did.
I didn't expect to sleep through the night from then, so I took a few of my evening medications and told myself I'd brush my teeth later after a short nap.
Yeah, well. :) Scott brought Ellie in to get a kiss and hug goodnight around 7:30 p.m. and I was dead to the world until I woke up to their talking. The next time I woke up, it was 10:30 p.m. and Scott was getting into bed. We spoke for a few minutes and I remember telling him I couldn't talk anymore or I'd wake up too much to fall back asleep so he wished me good night.
And then, way too early for me, the alarm was going off at 6 a.m. and it was time to get up to help get Ellie ready for school.
I know Scott can do Ellie's bedtime routine alone -- he's done it plenty of times that way -- but I also know it goes smoother when we're both there.
So I consider it a real gift that he let me go off to bed early and essentially sleep through the night (I never did get those teeth brushed until this morning -- don't tell my dentist!).
The statistics I've seen say that 75 percent of marriages break up after one partner or both develops a chronic illness. And while I know it could still happen even in my marriage, I'm grateful every day that my husband takes his marriage vows (especially the "in sickness and in health" one!) seriously.
L'shana tovah to everyone celebrating Rosh Hashana this week. For the first time since I moved to the PNW, we'll be attending a festive holiday meal tonight thanks to an invitation from a friend on our synagogue's outreach committee who "adopted" me after I got sick.
So there have been some good things to having this illness. But that doesn't stop me from wishing for a healthier new year for myself and everyone else with chronic health problems.
Saturday, September 27, 2008
Because if they were wrong, I certainly would have had a major heart attack the other night.
We went to Costco, the first time I've been there in at least a couple months. Did our usual -- had dinner, then shopped 'til I dropped. Actually, I use the electronic scooters they very kindly make available to customers who need them. But still, Costco shopping is an exhausting experience for me.
The scooter is actually an issue because Ellie, my almost-4-year-old is fascinated by it and wants to ride on it with me. That wouldn't be a problem except she inevitably tries to fight me on who gets to steer and/or hold the lever that makes the scooter move.
Ultimately, I end up having to tell Scott that it's too much for me, I don't have the strength to fight Ellie for control of the scooter, and he scoops her up and puts her screaming into the seat on his conventional shopping cart.
But it didn't start out that way. One of the first things I noticed when we got to Costco were adorable fleece coats for little girls. I had to ask Scott for help digging through the piles for the right size (and of course the first and possible only size 6x was in the farthest stack back on the table and discovered only after we'd gone through five other piles of mixed sizes) and after we had it and confirmed that yes, Ellie really did love the coat as much as I did, we put it in the basket.
"Pick me, Mommy! Next time, pick me, Mommy," Ellie said.
"Pick you for what?" I asked.
"To get something! To help," she replied.
So I promised she could be my helper while we shopped. And she did great for awhile. I sent Scott off in one direction to get muffins, while Ellie and I picked out the best pack of kitchen towels and then searched for some socks in her size. She was great -- she walked next to my scooter, holding on to the basket, and we chatted as we headed to catch up with Scott where we said we'd meet.
It was a little later that we had our usual battle for control of the scooter, even though when I gave her permission to ride on it with me, she promised that she wouldn't try to drive it.
Scott and I had again split up to look for different stuff and by the time I found him again, he'd already made it through the check out. I'd gotten sidetracked by the clearance pile of Disney Princess summer outfits (Only $7, down from the $13 or $16 I paid at the start of the summer -- who could resist stocking up for next summer?), and needed to go through the line myself to pay for the stuff I'd picked out.
Ellie decided she wanted to be with me, and so we sent Scott to get the car and bring it to the front door after unloading his cart. Meanwhile, Ellie helped me put four outfits on the conveyor belt thingie after admiring each one. But it was Costco, so there was a line and we had to wait our turn. And almost-4-year-olds are not good at waiting.
Suddenly Ellie decided she was going to go find Daddy. I told her repeatedly that he was out in the parking lot and she needed to wait with me and then we would go find him together. That wasn't good enough, and suddenly she pulled away from me and started pushing her way through the line at our checkstand and heading for the front door.
At that point, I think I swore, and kind of froze, half standing up as I called after her telling her to "come back! Daddy is in the parking lot and it's not safe!"
I didn't know what to do. I know from experience that the scooters don't move fast enough to catch up with a racing and determined Ellie. I also knew that physically I didn't have it in me at the end of a long day to run after her fast enough to actually catch her.
As I was panicking, a very nice youngish guy behind me in line, who was there with his wife and a daughter who looked about a year younger than Ellie, asked if I'd like him to catch up with her. "Oh G-d, yes! Thank you!"
And off he ran.
Ellie was out of my sight when he caught up with her, but I could just barely see him. He tried talking to her to coax her to return to me, but that clearly wasn't working. "He'll know to just pick her up and bring her back, won't he?" I plaintively asked his wife. She assured me he would, just before he bent down to pick her up and began striding back to us.
I should have just abandoned my purchases where they were waiting to be rung up. Instead, I held onto Ellie tightly as she squirmed and wriggled and screamed to be let loose to go find Daddy.
My heart was racing and I physically shook as I imagined all the things that could have happened to her -- from getting knocked over by someone's cart in the store as she dashed in front of them without looking to being snatched by a pervert to being hit by a car as she ran into the parking lot.
When we finally got into the car, Scott and I were both telling her she can't just run off like that, that it is dangerous and it scared Mommy badly.
"I wasn't scared," she insisted.
"That's because you don't know enough of what could have happened or you would be scared too," I said. "It was very, very dangerous!"
"What could happen?" she asked.
And I explained, listing the various things that could have happened to her (and having to explain what a stranger is -- how did she get to be almost 4 and not know what a stranger is?).
Still unhappy at having been captured before she got out of the store, she muttered to herself several times, "I wasn't scared. It wasn't dangerous. I wasn't scared."
And of course Scott and I agreed that obviously if we split up again in a store, Ellie must stay with him because she clearly hasn't outgrown her habit of taking off running in public places. It was dangerous enough when I was perfectly healthy and could chase after her, but now ... I shudder to think what could have happened if it weren't for a very kind man with a family of his own.
And it still kind of bugs me that even though I was shouting at Ellie to stop and come back from a scooter, not a single Costco employee tried to stop her or even offered to help. That's disappointing from a store that usually has extremely helpful and friendly employees, although I do understand not wanting to touch someone else's child for liability reasons.
But still -- clearly I had a disability of some type or I wouldn't have been in a scooter, but none of them even seemed to notice that I was shouting at a child to stop running and come back. I don't know.
I don't mean to suggest that it was the store's duty to help me parent my out-of-control child, but I wonder if she had made it to the door, would the person there checking receipts have let a preschooler run out into the dark and the parking lot without an adult? Would someone have noticed and stopped her?
And it did worry me a little bit that Ellie allowed this strange man to pick her up and was actually smiling at him and chatting away as he brought her back to me. I'm sure he told her that her mommy sent him, but still! We tried to have the stranger danger talk last year but she wasn't ready for it and didn't understand. I think it's time to really do it, even if her lack of fear of strangers was to my benefit during this incident.
Wednesday, September 24, 2008
Right when I'd come around to thinking that celiac disease could be a blessing of a diagnosis if it fixed all my problems, or even most, I find out that the tests the rheumatologist ran last week came back normal.
I'm hoping to get a copy of the results tomorrow when I see my internist, and I'll let you know exactly what they were then. The nurse I spoke to a little while ago said the tests run were an IgG and an IgM (I think -- it might have been an IgA) as well as
the anti-tissue transglutaminase antibody (tTG) and anti-endomysial.
So I could be wrong, but I think that pretty well rules out celiac disease and certainly my rheumy felt it ruled out the need for biopsies of my small intestine.
It's just kind of funny because once I got over the hassle it would be to change the way we cook and eat in our house -- totally worth it if it would help, but a hassle nonetheless -- I realized that of all the possible diagnoses that have been thrown around for me, this would be one of the better ones because it wouldn't require medication or surgery, just diligence on my part. And I'm assuming that once I realized how much better I felt on a gluten-free diet, it would reinforce my diligence. (But, boy, I sure would have missed my husband's homemade challah ...)
I'd done some reading online about it, talked to dietician friend Joan whose somewhat an expert on celiac disease and gluten-free diets, discovered a list of local restaurants with gluten-free menus (or at least meals). And it was all starting to sound not so incredibly bad. Especially when Joan told me that if it was celiac disease, I would start to notice an improvement within days. That definitely sounded good to me!
So, back to the drawing board.
I think I need to follow up with my immunologist, which I've put off doing for a few months now. I'm waiting to hear back what the rheumatologist wants to do next since we left things hanging on these test results.
Man, I sure wish I didn't always have to be so complicated all the time!!! :)
Everyone has people in their life with chronic health problems -- or perhaps it's someone who's normally very healthy but is having a rough pregnancy and was put on bed rest. And you want to help, or just do something nice for them, but it's hard to know what to do.
This list is great.
And I guess I do have to admit that I somewhat identified with the intro about feeling forgotten about sometimes. I am lucky to have several friends who make a point of keeping me up on their lives and continue to reach out to me. But most of the folks I used to spend a lot of mommy-and-kid time with have moved on with their lives and I don't see or hear from them anymore. Of course, it's my own fault mostly -- I don't reach out as much as I should either, because I feel like I don't have much to share other than my medical stuff, and who wants to hear about that all the time? I sure don't! But it's also made me more aware that people's illnesses and problems didn't necessarily go away just because you stopped hearing about them when they got out of crisis mode.
When I was in the hospital, and just home from it, some of my favorite gifts that weren't mentioned on the list I linked to above were gossipy celeb magazines. Especially when I was in the hospital and on mega doses of steroids, I had a lot of trouble focusing and the short "articles" -- can you really call it an article if it's only a paragraph or two long? -- were exactly right for my attention span. Plus, those kinds of magazines are a guilty pleasure for me that I rarely indulge so they were a special treat.
One friend showed up at the hospital with several magazines, a puzzle book (which I didn't do but it kept my mom busy when she visited a few weeks later! A double gift!), fuzzy socks and great lotion that I'm still using a year later. That was a great bag of gifts, and someone who clearly ignored me when I said she didn't need to bring anything but I'd sure appreciate a visit.
So many people were generous enough to bring us meals. But I have to admit that my favorites were the ones who included dessert. One friend brought a delicious chocolate-swirl banana bread that was so good that I begged for the recipe and we still make it once a month or so! (And hey, it turned out to be a Cooking Light recipe so we can pretend it's healthy for us too! :)
I did learn from my experience that it's much more helpful to offer to do a specific task than to say, "Do you need anything? Is there anything I can do for you?" Because when you feel like crap and your brain is barely working, it's easier to just say "No but thanks for asking!" than to actually come up with a list of things that need doing. And sometimes it's best of all to just say, "I'm going to do XYZ for you, ok?" and not give the person a chance to say no.
For me, one of the biggest and best gifts was from the people -- especially busy moms -- who made time to visit me periodically but also kept the visits brief because they were aware of how much they tired me out. That might not sound like much, but when you have to shlep around a 2- or 3-year-old, sometimes with an infant too, it's a lot of work to pack them up, load them in the car, go somewhere and get them unloaded, and then turn around in an hour or less and pack them back up again. Especially when the older child starts whining about not being ready leave, that they just found the good toys and why can't they stay longer? :) And yet, so many mommy friends did that for me in the early weeks of my illness. It was huge. And I liked seeing the kids because I was missing Ellie so much when she first started daycare fulltime.
Tuesday, September 23, 2008
So when my alarm went off at 9:45 a.m., one of the first things I did was take one of my carefully hoarded Provigils to give me the energy boost I needed to get through the day.
So then I'm getting dressed, going back and forth between the bathroom and the bedroom, when I notice the blinking light on the phone and decide to check the voicemail that was left while I was sleeping. (I heard the phone ring, but ignored it.)
Turns out, the dental hygienist who was supposed to clean my teeth today didn't come in to work -- I assume she called in sick -- so they were calling to reschedule me. After bad childhood experiences with the dentist, I'm always perfectly happy to postpone the inevitable and reschedule my appointments.
But oh, why didn't I check voicemail before I wasted a Provigil on a day when I don't really need one???!
I may have mentioned that I'm treasurer of my MOMS Club chapter? Well, I was under pressure from our editor to get to the PO box and see if there was a check from an advertiser asap because she wanted to send out the October newsletter last night.
But I didn't make it out over the weekend, and Mondays are generally bad days for me anyway because I'm recovering from the weekend. So I slept until 1:30 p.m., took my pain meds followed by a shower, and headed downstairs. By 2:30 p.m., I was feeling not-so-bad and decided to go run the errand after all so I didn't have anyone yelling at me for screwing up their schedule.
I didn't get in an accident. I didn't break any traffic laws that I'm aware of, other than driving under the influence ... so no big deal, right?
But it was. I'm usually so careful not to drive if I've taken pain meds, just as I used to be meticulous about not driving if I'd drunk anything alcoholic. (That's moot for me now because I can't have alcohol due to the meds I take.) I've actually had arguments with people who think it's no big deal to drive after taking a couple Vicodin because I believe it's exactly the same as driving after a drink or two: You don't feel tipsy or drunk or loopy, but your reactions are affected all the same.
When I was kid and my friends were starting to drive, my father took me aside (as I'm sure he did my siblings) and made me promise I'd never drive if I drank and I'd never get in a car with someone else who had been drinking. In return, he promised that if I called and said I needed a ride home for safety's sake, that he would come get me no matter how late at night and there would be no questions asked nor any punishments for ending up at a party with alcohol.
Well, I was kind of nerdy as a high schooler, so it really wasn't a problem. In college, when calling my parents for a ride home wasn't possible since they were 4 hours away, I still pretty much stuck to that rule. I remember walking home from a Mexican restaurant where a bunch of us had gone for cheap Margaritas rather than take a ride from a drunk driver; the benefit of being drunk myself meant I didn't really mind that it was 2 or 3 miles walk to get home, and I didn't notice getting blisters or even when they started bleeding until I got home and took my shoes off.
So although I've had a few exceptions that I regret and was lucky enough to come through safely, I've been a stickler about not drinking and driving or taking pain meds and driving for pretty much my whole life.
So why did I do it yesterday for what turned out to be a $5 check for a single ad for a single month?
A dumb, dumb mistake that I hope I don't foolishly make again. Because really, I was lucky yesterday that nothing bad happened. And it's sort of a silly thing to succumb to peer pressure at the age of 41 when I had no problem resisting it (for the most part) in my teens.
Sunday, September 21, 2008
You see, I'd been worried for awhile now that I was sleeping a lot more than I used to, and that my days were getting shorter because I'm often sleeping until 1 p.m. or 2 p.m. on weekdays when I used to sleep until 11 a.m. or noon most days.
But then I realized our family schedule has changed since Ellie left Kindercare and started at Touchstone Preschool back in June. And that's why my sleep schedule has changed.
When Ellie attended Kindercare, Scott and Ellie would get up at 6 a.m. and usually be out the door by 6:20 a.m. (It's a huge time saver that Ellie dresses for the next day before bed, sleeping in her clothes rather than pajamas and thus avoiding lengthy discussions about what to wear to go to school in the morning time crunch. We have them at bedtime instead, which is a little less anxiety-producing because it's not making Scott late for work if Ellie tries on five outfits before settling on the "perfect" one.) Ellie would get to Kindercare about 6:45 a.m., and eat breakfast there.
But Touchstone doesn't open until 7:15 a.m. and they don't serve the kids breakfast. In fact, the first snack isn't offered until 10:30 a.m. so it's pretty important that Ellie have something to eat before she gets there. (They do serve the kids lunch, which is a huge benefit since I can't imagine having to pack Ellie lunch every day.)
So now mornings are more complicated because we have the whole breakfast dilemma. At school, Ellie pretty much eats whatever they serve. Every teacher she's had has raved about what a "good eater" Ellie is. I'm convinced it's part of the peer pressure thing, just like with naps -- if everyone is doing/eating it, then that's what Ellie does too. And she learned pretty quickly that there weren't alternatives at school if she wasn't in the mood for what they were serving.
But at home, it's a different story! It doesn't help matters that Scott and I eat radically differently for breakfast. For other meals at home, it's easy to say, "Well, this is what we're serving. If you don't want to eat this, you can wait for the next meal." We make sure that there's something on the table that we know Ellie likes and eats, and it's a very rare occasion that we will get her something different to eat if she doesn't want what we're serving.
But at breakfast, Scott usually eats a Costco muffin. I generally have toast of some sort -- bread, bagel, English muffin. There's also often fruit on the breakfast table, especially over the summer when we've had tons of fresh berries of all kinds from the farmer's markets. But because Scott and I choose what we're going to eat for breakfast, we end up letting Ellie choose too. And anyone who's spent much time around preschoolers knows how indecisive they can be, changing their minds sixteen times in 10 minutes. :)
So not only do I end up being awake for a longer period to get Ellie and Scott off to school and work, but it requires a higher level of alertness and involvement than when they pretty much rolled out of bed and headed out the door during the Kindercare days.
It used to be that I'd go back to bed by 7 a.m. and sleep four to five more hours, usually getting up by noon. Now even though I'm just as tired, it takes a little more winding down and I'm not getting back to bed until 8 or 8:30 a.m. and usually waking up somewhere between 1 and 2 p.m.
And that pretty much explains why I'm sleeping later on weekdays than I used to. It's good to realize that I'm not really sleeping (much) more than I had been doing. It's more that my sleep is in more of a split shift than it had been. And that's a relief.
Of course, it's a little bit embarrassing that it's taken me so long to figure this out since Ellie (and I) have been on this schedule for three months now ...
Friday, September 19, 2008
And that's definitely good news!
In a one-income household that already has one person with a debilitating chronic illness, it's even scarier than normal when the sole breadwinner has a cancer scare, no matter how mild a scare it is. (Mostly I'm just a worrier, and I was definitely worried before the dermatologist visit that it was going to be something bad.)
Meanwhile, I'm just trying to recover from the visit to the rheumy yesterday. I hate having all my achy joints poked, prodded and squeezed, which just makes them hurt that much more. I could hardly even use a fork at dinner last night because my hands hurt so much. :(
So I'm taking it easy today, especially since it's a Friday and that means my whirlwind of a preschooler will be home for the next couple days.
Hope y'all have a good weekend!
Thursday, September 18, 2008
He still has no answers. He wasn't impressed with my latest ANA results, which were 29, up from 19 (considered a low positive) last year. My internist felt it was significant as my "body declaring itself" to definitely have an autoimmune disease. The rheumatologist told me to tell her to stop running that test on me. :)
So we discussed all my recent blood tests, particularly the Vitamin D deficiency that's not improving significantly despite four months on a megadose of 50,000 IU per week. (A few weeks ago, my internist raised the dose to 50,000 IU once every five days, which is an annoying pattern to remember.) Also, my ferritin levels, which are my iron stores, are deficient and dropping every time I'm tested despite my taking iron supplements. (I recently doubled my dose of supplements, and my internist says if my ferritin levels don't begin to improve, she's going to send me to the hemotologist again and recommend IV iron. And I'd definitely prefer to avoid that.)
So, the rheumy says that with such a bad Vitamin D deficiency and unexplained iron deficiency (although I'm not anemic -- my red blood count is fine, as is my hemoglobin, although both are on the low end of normal) that perhaps it's time to test me for what he calls the trendy disease of our decade -- Celiac Disease. Apparently, 20 percent of people with celiac disease have joint pain like mine, and it could explain the iron and Vitamin D deficiencies, fatigue, etc.
Also, he said something to the resident about my MCV catching his attention previously, although he didn't explain to me what was unusual about it. If, like me, you have no idea what MCV is, here's the LabTestsOnline explanation:
Mean corpuscular volume (MCV) is a measurement of the average size of your RBCs. The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in anemia caused by vitamin B12 deficiency. When the MCV is decreased, your RBCs are smaller than normal (microcytic) as is seen in iron deficiency anemia or thalassemias.
So I got tested today for Celiac Disease. The rheumy says it's highly unlikely -- in the past five years, he's had many, many people come to him having self-diagnosed Celiac Disease but he's had only one patient actually test positive for it. And I told him I sure hoped he was right because I love bread and there's gluten in almost everything in my diet other than fresh fruit, veggies and meat. I do not want the complication of having to go gluten-free.
But I'm happy to have the test run. What's another needle stick at this point? And it would be nice to tell the well-meaning folks who tell me that a gluten-free diet can cure anything that I've been checked out for it and really don't need to add that complication to my life. :) (And yes, I have had a surprising -- to me, at least -- number of people tell me that going gluten-free and dairy-free would absolutely cure me of whatever ails me. Of course, none of them have medical degrees or any other types of credentials other than being gluten-free and dairy-free themselves without having bothered with testing for Celiac Disease first.)
So I'll call next week to get the test results, and fully expect to hear that they came back normal. (I guess there's two tests to run for Celiac Disease and they ran both of them.)
And other than that, the rheumy says to just keep doing what I'm doing, treating symptoms and muddling through, and he believes eventually whatever my health problem is will prove itself. In the meantime, he insists that there's no benefit to a label, particularly since the easy ones he could give me -- fibromyalgia and chronic fatigue syndrome -- sometimes carry negative biases (in his opinion).
(Laurie Edwards of A Chronic Dose just happens to have blogged about labels and other semantics of the patient experience earlier this week. I encourage you to check out her post from Sept. 16. I'd give you a direct link to it, but for some reason I'm having trouble getting it. But do go read it! You don't have to scroll down very far to find it and it's worth the trouble, I promise.)
Wednesday, September 17, 2008
I'm posting it because it made me giggle and shares many of political views. (I do realize that there are mostly apples-to-oranges comparisons in this piece because Obama and Palin are not running for the same office. But still. I'm tired of all the pro-McCain/Palin email I get even though I think everyone should know better. :)
I'm a little confused. Let me see if I have this straight.....
* If you grow up in Hawaii, raised by your grandparents, you're "exotic, different."
* If you grow up in Alaska eating moose burgers, you're a quintessential American story.
* If your name is Barack, you're a radical, unpatriotic Muslim.
* If you name your kids Willow, Trig and Track, you're a maverick.
* If you graduate from Harvard law School, you are unstable.
* If you attend 5 different small colleges before graduating, you're well grounded.
* If you spend 3 years as a brilliant community organizer, become the first black President of the Harvard Law Review, create a voter registration drive that registers 150,000 new voters, spend 12 years as a Constitutional Law professor, spend 8 years as a State Senator representing a district with over 750,000 people, become chairman of the state Senate's Health and Human Services committee, spend 4 years in the United States Senate representing a state of 13 million people while sponsoring 131 bills and serving on the Foreign Affairs, Environment and Public Works and Veteran's Affairs committees, you don't have any real leadership experience.
* If your total resume is: local weather girl, 4 years on the city council and 6 years as the mayor of a town with less than 7,000 people, 20 months as the governor of a state with only 650,000 people, then you're qualified to become the country's second highest ranking executive.
* If you have been married to the same woman for 19 years while raising 2 beautiful daughters, all within Protestant churches, you're not a real Christian.
* If you cheated on your first wife with a rich heiress, and left your disfigured wife and married the heiress the next month, you're a Christian.
* If you teach responsible, age appropriate sex education, including the proper use of birth control, you are eroding the fiber of society.
* If, while governor, you staunchly advocate abstinence only, with no other option in sex education in your state's school system, while your unwed teen daughter ends up pregnant , you're very responsible.
* If your wife is a Harvard graduate lawyer who gave up a position in a prestigious law firm to work for the betterment of her inner city community, then gave that up to raise a family, your family's values don't represent America's.
* If you're husband is nicknamed "First Dude", with at least one DWI conviction and no college education, who didn't register to vote until age 25 and once was a member of a group that advocated the secession of Alaska from the USA, your family is extremely admirable.
OK, *much* clearer now.
Monday, September 15, 2008
Anyway, Scott got a head-to-toe exam on Friday. The dermatologist did agree that the "barnacle" I'd called about was different looking than the other ones so she removed it just to be sure, saying that although it's very rare, sometimes there is cancer hiding underneath the barnacle. She called that a "two-fer." (I liked her. :)
So despite being really icky looking, it's almost guaranteed to be nothing serious.
The doctor also removed a mole on Scott's stomach that had undefined edges, which can be a sign of a dangerous mole.
Both were sent to the lab, and I fully expect to get a letter in a couple weeks telling Scott that both turned out to be totally benign and nothing to worry about.
Thank you to those who kept him/us in your thoughts and prayers over this.
Sunday, September 14, 2008
Although it's never had quite the same effect as it had the very first time I took it, when it gave me such an energy boost that I felt like me again, it still gives me this magic window of functionality.
It has allowed me to attend the preschool's "Meet Your Teacher" open house the night before school started, followed by a picnic sponsored by the school's parent organization.
Provigil also helped me make it to last week's MOMS Club board meeting. (I'm treasurer of my chapter. I might not make it to activities, but I can handle the books.) I'd had a lousy day, was exhausted, but I took Provigil around 4:30 p.m. and it perked me up enough that I made it through the 7-10 p.m. meeting.
And this weekend, I again needed the boost to be able to have dinner with some new friends we've made through Ellie. (Even Scott has commented that one of the unforeseen benefits of having Ellie is that we're meeting some cool people we really like that we probably never would have crossed paths with otherwise.) Evenings really are next-to-impossible for me normally, but Provigil makes them, if not "normal," doable.
But just like Cinderella, whose dress turned to rags and carriage back to a pumpkin at the stroke of midnight, after five, six if I'm really really lucky, hours, the bubble pops.
And it all comes crashing down.
The pills, which are supposed to last eight to twelve hours, probably wear off gradually but it seems like a sudden end when it comes.
As a friend drove me home after the board meeting, I was having trouble keeping my eyes open. I could barely drag myself up the front steps to the door. And the next day? I'd say it was like a hangover but that's not it exactly. It's more like a rebound effect, that by pushing my body with medication to do more than it could on its own, I increase the level of exhaustion by at least a factor of 10. It takes days to recover.
So is it worth it to take Provigil?
I go back and forth.
On the one hand, it's a big mood boost for me to feel like I can participate more in Ellie's life and perhaps even have a (small) social life. That's exactly what my internist was hoping for when she gave me the Provigil samples after I told her I needed my anti-depressants tweaked yet again because I got so depressed at how little I could participate in the activities Scott and Ellie did during her 12-day break between summer camp and school starting.
On the other hand, the recovery period from the "over-exertion" I do with help from Provigil means I am getting even less done on my non-Provigil days. (Which is most days. I've taken six Provigil caplets in 20 days.) Some non-Provigil days, I can't even manage to check my email or focus on a book, much less post to my blogs. Then again, I had days like that even before the Provigil so perhaps it's not fair to blame it on a rebound from the medication.
Saturday, September 6, 2008
The stats are amazing -- they say that nearly 1 in 2 people have a chronic illness and 96 percent are invisible.
At first I thought that had to be an exaggeration. But then I looked at my (birth) family -- parents and siblings and me. Three of the five of us have invisible chronic illnesses. And if you count allergies as an invisible chronic illness -- and boy, people who don't have them or only have very mild allergies do not understand the severity allergies can have for the rest of us -- then I think we're five out of five. (I'm embarrassed to admit that while I think my brother has some allergies, I can't remember what, if anything he's allergic to. It's been too many years that we haven't seen much of each other. Maybe it's "just" hay fever?)
The following video was created for last year's awareness week, but is still very relevant:
Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network
I laugh every time I come across the "Don't" about telling someone "But you look so good!" or some variation on it. I grind my teeth every time someone I haven't seen since they brought me a meal right after I got home from the hospital last summer says in a hopeful/cheery voice, "You're looking great!" The follow-up -- "You must be feeling much better!" -- is sometimes said aloud, sometimes just implied. I've stopped in most cases trying to explain that the whole point of an invisible illness is that it's invisible. Which means if I'm making an effort to conceal my fatigue, as I generally do in social situations, I look perfectly healthy. It does not mean I feel perfectly healthy.
Anyway, if you have an invisible chronic illness, or you know someone who does, take a little time next week to visit InvisibleIllnessConference.com and check out the seminars and articles to read. You might even consider visiting the gift shop ... I know I'm tempted by more than one of the t-shirts!
Friday, September 5, 2008
Not that I'm wishing anyone else sick!
But a couple nights ago, Scott came into Ellie's room at bedtime without a shirt on. I think the t-shirts he uses for pajamas were all down in the dryer or something. As he bent down to help Ellie into her overnight pull-up (she's not night-trained yet), I saw something funny.
"What's that?!" I asked.
"What?" he answered. "Not now."
After Ellie was asleep, he let me have a closer view of what I think is a really suspicious looking mole. He saw a dermatologist awhile back -- 2002? -- after his younger sister had a mole determined to be melanoma. That dermatologist did a full-body exam of Scott, biopsied a couple moles that were possibly suspicious (but came back normal) and told him to get checked out regularly.
But Scott's incredibly healthy (thank goodness!) and somehow never made it back to the dermatologist again.
But this mole is now triangular, raised and kind of flaky, almost scabby. And it had dark, almost black points near the center.
I went to make an appointment with the dermatologist he saw years ago, but of course he has changed jobs and insurance companies, and she is not covered by our insurance. So I've gotten to spend a day and a half tracking down recommendations for dermatologists and trying to get him an appointment without too long a wait.
It looked like he was going to have to wait until Nov. 5 to get in with anyone covered by our insurance, but apparently I did a good job sounding like a worried wife because I finally got a call back that when the nurse passed my description on to one of the dermatologists in the practice, they found time to squeeze him in next Friday.