I seriously think the Universe hates me. It gives me everything I want and then punishes me for it.
I've waited for more than a decade to go on any kind of vacation. Anywhere that isn't Wisconsin. Somewhere different, somewhere I haven't been. But still comfortably within the United States, as bad and scary as it is in some parts of this country, the rest of the world just seems like a nightmare.
So we finally sat down, came up with a plan, and booked our trip. Since then we have had our fingers (and toes) crossed and been holding our breaths. We figured we could still go if one of the kids broke a limb or whatever, but we really need at least 2 healthy adults. Preferably, the 2 healthy adults would be the ones who could drive, since we have to take 2 cars. In other words, I was in the same category as the kids. But still, If any of us broke or sprained anything, it'd put a huge damper on our trip.
So, naturally, I fell down some steps this past weekend. Because I'm just that awesome. Of course I hurt my ankle and foot. It was horribly bruised and swollen, though it's getting better. I'm pretty sure there is probably a small fracture or two in there as well. Unfortunately, we can't tell yet because my fractures never show up right away on x-rays. Sometimes we have to wait a week or two and sometimes it takes an MRI or other scans to find them. Sometimes we don't know about them until years later, when the deformed bones show up on x-rays of other things (true story).
Of course the stars would finally align and I get the vacation I've waiting for, and then, less than 3 weeks away from it, I'd fall and break my ankle.
That is the story of my life.
Jun 18, 2013
Jun 4, 2013
Family Trip, The Sorry For Being Misleading Edition
I realized, at some point Sunday, that my last post was terribly misleading.
It should have read a little more like: we suddenly sat down and started planning a vacation to Missouri. We haven't actually gone yet. We're going in July
And I am more excited than I could ever describe! Seriously. I so need this vacation. We're only going to be gone for four days, but it's a start. It's the second time we are traveling so far on our own. Not for lack of desire, or ability even. A lack of confidence and a whole lot of irrational fear, which was made worse by my step-sister's death.
Not to sound corny or anything, but, Lexi is a huge motivator for us. I don't want her to live in fear of ever doing or going or being. Now, if she's happily content not to do or go or be, then that's a different story. There is nothing wrong with doing something (or not doing something) simply because it is what you desire. The problem occurs when you don't do something out of fear. You know what I mean?
Anyway. I'm more excited than I could ever properly convey. But we are still only at the point of getting things planned out. Though I must say; for having decided this on the spur of the moment, and knowing nothing about St. Louis or Missouri, less than a week later and we're pretty much all set. We could have gone this weekend, if we had wanted.
Here's to hoping the trip goes as well as the planning part has.
It should have read a little more like: we suddenly sat down and started planning a vacation to Missouri. We haven't actually gone yet. We're going in July
And I am more excited than I could ever describe! Seriously. I so need this vacation. We're only going to be gone for four days, but it's a start. It's the second time we are traveling so far on our own. Not for lack of desire, or ability even. A lack of confidence and a whole lot of irrational fear, which was made worse by my step-sister's death.
Not to sound corny or anything, but, Lexi is a huge motivator for us. I don't want her to live in fear of ever doing or going or being. Now, if she's happily content not to do or go or be, then that's a different story. There is nothing wrong with doing something (or not doing something) simply because it is what you desire. The problem occurs when you don't do something out of fear. You know what I mean?
Anyway. I'm more excited than I could ever properly convey. But we are still only at the point of getting things planned out. Though I must say; for having decided this on the spur of the moment, and knowing nothing about St. Louis or Missouri, less than a week later and we're pretty much all set. We could have gone this weekend, if we had wanted.
Here's to hoping the trip goes as well as the planning part has.
Jun 1, 2013
First Family Vacation (and an itchy face)
I missed Thursday. But I have a very good reason for it. On Wednesday, my sister and I were talking and all of the sudden we decided to get out of town. No, literally. We decided our families needed a vacation.
We wanted to do something fairly cheap, because we're poor you know, and still fun for all of us (from age 2 to age 40). I picked St. Louis Missouri because I'd read a blogger who'd stopped there on a RV trip a few years ago. She and her children seemed to really enjoy the Missouri Botanical Garden (at least that is my memory of it anyway), though they were only in St. Louis for one day. I've seen, on TV, the fireworks display at the Gateway Arch numerous times. Bonus; it's only a 7-ish hour drive. Mini road trip!
At first we couldn't find a campground near enough to St. Louis (Google, you failed me!), and we didn't want to spend all of our money on a crappy, bedbug infested motel. So we tried to find other options (including seeing if there was an 8 hour or less shortcut to the ocean, have I mentioned I hate living in Wisconsin). I was adamant about not going north or even north west. We'll probably never ever try to go to Chicago again, sorry but you people take the whole Wisconsin/Illinois rivalry way too far. Iowa was an option but there just wasn't enough to do in a small enough area to make it fun for the kids. Everything else would have eaten up our entire four day vacation with just driving. And would be way more expensive. So we kept going back to St. Louis.
Back and forth we went, even giving up at one point. We searched routes and drive times, amenities and attractions. Then we hit gold. And this is probably going to sound lame to some, but, we found a Jellystone campground in Eureka Missouri, just to the west of downtown St. Louis. It just so happens that it was next door to a Six Flags (because I knew there was one in St. Louis but apparently my brain didn't make the connection until Google actually told me).
Long story short, we're probably not actually going to the Six Flags ($52.99 a person for adults and $39.99 a person for children, even if we tried to pass Lexi off as two years old, which is plausible just saying, and used the free pass from the campground, we'd still have to pay for four people at $40 or more a person).
Our plan is to see some museums, caves, gardens, and fireworks at the Gateway Arch. And all of that for $200 for all seven of us (not counting the cabin we're renting). I'll break down how much we spent on everything, when we get back. Just know, it's not as boring as it sounds. Most of what we're seeing is going to be very interactive for the kids. Plus we get to see a different place.
The only thing that could stop us? My sister, jokingly, said she wouldn't go if I had a big wound on my face. Well guess what happened after 30-ish years. My face started itching. I'm used to these itching bouts, they happen. It's just that it hasn't happened on my face since I was a toddler. I guess we all just assumed it wouldn't happen there again. But boy were we wrong.
I'm trying to convince myself that it is just the scratching healing and that's why it's itching so bad right now. Though that doesn't explain why it stated in the first place, nor why other spots are itching. Here's to hoping I find some relief and get it healed before July 4th.
We wanted to do something fairly cheap, because we're poor you know, and still fun for all of us (from age 2 to age 40). I picked St. Louis Missouri because I'd read a blogger who'd stopped there on a RV trip a few years ago. She and her children seemed to really enjoy the Missouri Botanical Garden (at least that is my memory of it anyway), though they were only in St. Louis for one day. I've seen, on TV, the fireworks display at the Gateway Arch numerous times. Bonus; it's only a 7-ish hour drive. Mini road trip!
At first we couldn't find a campground near enough to St. Louis (Google, you failed me!), and we didn't want to spend all of our money on a crappy, bedbug infested motel. So we tried to find other options (including seeing if there was an 8 hour or less shortcut to the ocean, have I mentioned I hate living in Wisconsin). I was adamant about not going north or even north west. We'll probably never ever try to go to Chicago again, sorry but you people take the whole Wisconsin/Illinois rivalry way too far. Iowa was an option but there just wasn't enough to do in a small enough area to make it fun for the kids. Everything else would have eaten up our entire four day vacation with just driving. And would be way more expensive. So we kept going back to St. Louis.
Back and forth we went, even giving up at one point. We searched routes and drive times, amenities and attractions. Then we hit gold. And this is probably going to sound lame to some, but, we found a Jellystone campground in Eureka Missouri, just to the west of downtown St. Louis. It just so happens that it was next door to a Six Flags (because I knew there was one in St. Louis but apparently my brain didn't make the connection until Google actually told me).
Long story short, we're probably not actually going to the Six Flags ($52.99 a person for adults and $39.99 a person for children, even if we tried to pass Lexi off as two years old, which is plausible just saying, and used the free pass from the campground, we'd still have to pay for four people at $40 or more a person).
Our plan is to see some museums, caves, gardens, and fireworks at the Gateway Arch. And all of that for $200 for all seven of us (not counting the cabin we're renting). I'll break down how much we spent on everything, when we get back. Just know, it's not as boring as it sounds. Most of what we're seeing is going to be very interactive for the kids. Plus we get to see a different place.
The only thing that could stop us? My sister, jokingly, said she wouldn't go if I had a big wound on my face. Well guess what happened after 30-ish years. My face started itching. I'm used to these itching bouts, they happen. It's just that it hasn't happened on my face since I was a toddler. I guess we all just assumed it wouldn't happen there again. But boy were we wrong.
May 23, 2013
Sick, Sick and More Sick
Wow, what a couple of weeks.
So, we can check off dental problems as cause for me being so sick since Christmas. I needed one root canal but had no infection. Which I thought I did. The rest of my teeth aren't nearly as bad as I had thought they were. Nor were there any mentions of the problems I'd had several years ago. So teeth are definitely out as a cause of illness.
No, again, I am not pregnant.
The best the doctors can ever say is "huh, well, must be something to do with your nerve condition". That's so helpful docs, thanks.
A few weeks ago I attended another IEP meeting for Lexi. It went pretty good, as usual. They are actually trying to be very helpful, it's just I don't know what any given situation is going to bring until it happens. So it's kind of like preparing for every possible situation. Which is difficult.
We did get her setup for twice a week therapy, through the school, during the summer. Which is good because there are limits to what I can physically do on my own. The fact that I didn't even have to ask but it was offered to us, well paint me pink and call me tickled. We were also offered a spot in the summer school program. Which I initially jumped at. I thought it would make Lexi happy and be good for her, however, after some recent behavioural issues I'm not going to put her in it after all.
She likes being at school, with all the kids and getting to play, but she doesn't like school. In fact she has been acting out a lot lately, and only for me. I know all about testing limits and normal toddler behaviour, but this is different. She tells me everyday how much she hates school (not the people, just going and working physically hard for three straight hours, and getting sort of lost in the mix). And then she hits me, kicks me, spits on me, or just generally causes destruction and mayhem.
Clearly she, like I did, needs the summer break to recuperate from the grind. Not to mention I still stand behind the feeling that she is too young to be so heavily involved in a school setting.
Her behaviour is what's really pushing the decision, though. Her and I have been doing nothing but butting heads over everything lately. I am positive it's because she's angry at me for making her go to school. So I'm giving her the summer break she needs. Hopefully she'll be sufficiently rested and bored and ready to go back in the fall (more like late summer, but whatever).
I'm still working on getting my home decorating blog up and running, as well as a few other projects. Illness and life got in the way, last week, but I'm thinking the decorating blog will be ready to go the day after Memorial Day.
Other than being sick and getting a cold, that's all that's been going on lately. I think Thursdays are the days I'm going to update here. It's a good day for it. So. . .
Catch ya next thursday!
So, we can check off dental problems as cause for me being so sick since Christmas. I needed one root canal but had no infection. Which I thought I did. The rest of my teeth aren't nearly as bad as I had thought they were. Nor were there any mentions of the problems I'd had several years ago. So teeth are definitely out as a cause of illness.
No, again, I am not pregnant.
The best the doctors can ever say is "huh, well, must be something to do with your nerve condition". That's so helpful docs, thanks.
A few weeks ago I attended another IEP meeting for Lexi. It went pretty good, as usual. They are actually trying to be very helpful, it's just I don't know what any given situation is going to bring until it happens. So it's kind of like preparing for every possible situation. Which is difficult.
We did get her setup for twice a week therapy, through the school, during the summer. Which is good because there are limits to what I can physically do on my own. The fact that I didn't even have to ask but it was offered to us, well paint me pink and call me tickled. We were also offered a spot in the summer school program. Which I initially jumped at. I thought it would make Lexi happy and be good for her, however, after some recent behavioural issues I'm not going to put her in it after all.
She likes being at school, with all the kids and getting to play, but she doesn't like school. In fact she has been acting out a lot lately, and only for me. I know all about testing limits and normal toddler behaviour, but this is different. She tells me everyday how much she hates school (not the people, just going and working physically hard for three straight hours, and getting sort of lost in the mix). And then she hits me, kicks me, spits on me, or just generally causes destruction and mayhem.
Clearly she, like I did, needs the summer break to recuperate from the grind. Not to mention I still stand behind the feeling that she is too young to be so heavily involved in a school setting.
Her behaviour is what's really pushing the decision, though. Her and I have been doing nothing but butting heads over everything lately. I am positive it's because she's angry at me for making her go to school. So I'm giving her the summer break she needs. Hopefully she'll be sufficiently rested and bored and ready to go back in the fall (more like late summer, but whatever).
I'm still working on getting my home decorating blog up and running, as well as a few other projects. Illness and life got in the way, last week, but I'm thinking the decorating blog will be ready to go the day after Memorial Day.
Other than being sick and getting a cold, that's all that's been going on lately. I think Thursdays are the days I'm going to update here. It's a good day for it. So. . .
Catch ya next thursday!
May 7, 2013
So About That Decorating Thing
Two beautiful, bright and nice days in a row? I'm not sure I can handle so much nice weather. Just kidding, Universe, I totally love it.
Seriously, though, we don't often get stretches of good temperatures, sunny skies, and dryness. It's usually a day or two here and there. It's nothing like, say, Seattle, but Wisconsin spends about half the year under cloud cover and well over half the year very cold or wet. I'm telling you, I'm not built for this area.
I'm a southern girl through and through. The arthritis in my spine only serves to drive that point home.
But, alas, I am stuck here. Probably for good.
There is one thing about Wisconsin that I do like; we have fairly vivid springs and falls. It's the kind of colorful nature that we wouldn't see if we lived in some place like Arizona. Though Arizona would be my dream place to live (if you take all things such as the schools, the weather, and whatnot into consideration). Actually, I prefer southern California or Florida, but for a variety of reasons I would never actually move to either place.
So, since I've accepted that I'm never getting out of this area (and probably not out of this house either), I've decided that the only thing I can do is make the best of it.
Which is, actually, something I've been working on for many months now.
We had some big important decisions to make before I could settle in here. I know it sounds weird to say that, after having lived here for 8 and a half years already, but, well, we had some situations.
Besides, my real passions are interior decorating and photography. What better way to combine them.
That means I'm finally getting back to my home decorating blog. I shut it down for a while because we had some issues and actually thought we were going to move. But we're not. Because of circumstances beyond anyone's control, we're staying put.
Here's my plan; I'll post updates here about once a week. As I said, I'm no longer comfortable sharing such deeply personal stuff with the world. Our situation is so very rare and relatively unique, it's hard for anyone to understand. I have enough to worry about without judgmental people, who only get glimpses, making wild assumptions. Also, as much as I try to deny it, I tend to be an overly emotional person. Strong, uncontrollable emotion and the internet don't mix well. So we'll just keep it all separate.
I'm going to try to do daily posts over on my decorating blog, though. Which I'll start next week.
So that's what's going on. Now to get back to work on the decorating.
Seriously, though, we don't often get stretches of good temperatures, sunny skies, and dryness. It's usually a day or two here and there. It's nothing like, say, Seattle, but Wisconsin spends about half the year under cloud cover and well over half the year very cold or wet. I'm telling you, I'm not built for this area.
I'm a southern girl through and through. The arthritis in my spine only serves to drive that point home.
But, alas, I am stuck here. Probably for good.
There is one thing about Wisconsin that I do like; we have fairly vivid springs and falls. It's the kind of colorful nature that we wouldn't see if we lived in some place like Arizona. Though Arizona would be my dream place to live (if you take all things such as the schools, the weather, and whatnot into consideration). Actually, I prefer southern California or Florida, but for a variety of reasons I would never actually move to either place.
So, since I've accepted that I'm never getting out of this area (and probably not out of this house either), I've decided that the only thing I can do is make the best of it.
Which is, actually, something I've been working on for many months now.
We had some big important decisions to make before I could settle in here. I know it sounds weird to say that, after having lived here for 8 and a half years already, but, well, we had some situations.
Besides, my real passions are interior decorating and photography. What better way to combine them.
That means I'm finally getting back to my home decorating blog. I shut it down for a while because we had some issues and actually thought we were going to move. But we're not. Because of circumstances beyond anyone's control, we're staying put.
Here's my plan; I'll post updates here about once a week. As I said, I'm no longer comfortable sharing such deeply personal stuff with the world. Our situation is so very rare and relatively unique, it's hard for anyone to understand. I have enough to worry about without judgmental people, who only get glimpses, making wild assumptions. Also, as much as I try to deny it, I tend to be an overly emotional person. Strong, uncontrollable emotion and the internet don't mix well. So we'll just keep it all separate.
I'm going to try to do daily posts over on my decorating blog, though. Which I'll start next week.
So that's what's going on. Now to get back to work on the decorating.
Apr 25, 2013
Quick Note
Getting back into the habit of writing is really weird. But. . .
I just want to say, right off the bat, that I probably won't do a tremendous amount of medical updating anymore. In fact, there are several issues I probably won't write much about anymore. That doesn't mean I can't still advocate and give people a look into what life is like with a rare, unnamed polyneuropathy that encopasses every part of our life and bodies. I just won't go into specific medical information or parenting/medical choices in that regard.
Personally I don't think it should be an all or nothing issue. I think we should all be able to raise our children the way we see fit, assuming we're not being abusive toward them, without worrying that everyone (including our own families) are going to nitpick every word and judge us to death. I don't get that luxury because I have a disability, so no matter what I do or say it's never going to be good enough. Which is why I'd just rather not go there anymore.
I didn't want to just switch gears, however, and give the few readers I have, whiplash. That'd be weird too. And who knows, maybe that will give way to the things I really like (because does anyone like disability and talking about it constantly?) to talk about.
I just want to say, right off the bat, that I probably won't do a tremendous amount of medical updating anymore. In fact, there are several issues I probably won't write much about anymore. That doesn't mean I can't still advocate and give people a look into what life is like with a rare, unnamed polyneuropathy that encopasses every part of our life and bodies. I just won't go into specific medical information or parenting/medical choices in that regard.
Personally I don't think it should be an all or nothing issue. I think we should all be able to raise our children the way we see fit, assuming we're not being abusive toward them, without worrying that everyone (including our own families) are going to nitpick every word and judge us to death. I don't get that luxury because I have a disability, so no matter what I do or say it's never going to be good enough. Which is why I'd just rather not go there anymore.
I didn't want to just switch gears, however, and give the few readers I have, whiplash. That'd be weird too. And who knows, maybe that will give way to the things I really like (because does anyone like disability and talking about it constantly?) to talk about.
Apr 23, 2013
Working on Not Shutting Down Every Time Something Doesn't go My Way
A life spent making mistakes is not only more honorable, but more useful than a life spent doing nothing.George Bernard Shaw
I wish I could tell you how many times I've sat down to write only to feel like I was so completely over it it wasn't even funny. For so many reasons.
I never intended to leave. I never intended to stop or walk away. But I did slip back into old patterns that were hard to get out of. That's just not healthy. And it doesn't make people want to read or learn about this weird, no name, neuro disorder and how it affects every aspect of life. I sucked. I admit it.
Since there are so many obstacles always blocking my way, I've decided how best to proceed. It took me awhile to get to this point, but I think I can start writing again. I also think that, given some of the changes I've been making (and sticking to this time), I don't think it'll all get so frustrating and overwhelming that I need to walk away from everyone and everything. Again.
It's taken me years to get to this point and it's still very much a work in progress. I obviously don't have it all figured out but I'm at least trying. Oh how I wish people understood just how hard I try.
So I guess that means I'm back then.
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