I suppose one of the reasons I started this blog was to reach out to others like me in similar situations, a universal desire, I'm certain. We all feel better in the company of others who can relate to whatever we've going through.
Ever since my mini stroke last year, I have made a concerted effort to get out of the house more, even though I feel less like doing it than ever before. But I was so determined to force my kids to socialize more even though the two oldest pushed against it. The truth is they need it, and they benefit from it, despite disabilities that make them fight having human contact, especially NEW human contact. The little one loves to get out and play with others, although he often wants to keep doing whatever he's doing in the moment, so he has also joined the protest movement against leaving the house. Once he's out though, he's usually happy about it.
Anyway, that is all about the kids. My dh hates leaving the house almost more than them. A grown aspie is harder to get into motion that the children, who at the very least will eventually capitulate rather than suffer my wrath. But the dh is practiced in the art of passive aggression; he will often say yes, and then sabotage our ability to actually do something with his behavior. But he needs socialization too, and occasionally I overcome inertia for the both of us, and out we go. Sporadic outings do not build long term relationships however, so he doesn't really have any friends in this fine city/state/region of the country. But everyone who knows him likes him, and my relatives are all very nice to him on the rare occasion that they see him. It's still not enough, but it's better than nothing. What I really want is for us to once and for all pick a church, and build a relationship with it as a family. Heck, I would even settle for all five of us choosing a different church each and rotating. You can still build relationships that way.
But I need something more for myself. My best friend is over an hours drive away, I'm lucky if I get to see her three times a year. We are both consumed with family drama that makes it difficult. Most of the rest of our good friends are in Los Angeles. The disability level in our household has really escalated since we've been here near Philly, which has made building new relationships very difficult. I try to keep in touch with some of our friends and family online, but it's been a struggle. But at least I have that option in this day and age. I've made some new friends online, and even met some of them in person.
We found a new church through web surfing a few years ago, and I was excited when I found out that there was an online community active in the church in addition to their relatively local physical building. As it turned out, other members of my family had a history with this church that I was completely unaware of, but it made me feel that my prayers to find the right church for us had been answered. I knew that it was likely that dd would have a hard time with any regular church attendance, and though some of the people there were absolutely outstanding as far as fellowship opportunities were concerned, sure enough, she eventually pulled back. Our attendance since 2005 has mostly consisted of participating in their yearly halloween alternative celebration, but I still like the congregation as a whole. I figured we could always participate in their online forums as well, but alas, the webmasters apparently have new responsibilities that have put maintaining the website a bare minumum priority.
Well I was pleasantly surprised this year to find out that several of my favorite people from the church have started blogs which have become my favorite new nightly reading time. I really enjoy this fellowship, though I'd love more of the in person variety. But I find as much entertainment value in blogs as I do with novels. Don't get me wrong, I still read voraciously from the local libraries, but now the spare hour or two I get to myself after everyone else is in bed is often devoted to blog reading. I also have found great comfort in several blogs of autism parents and some individuals with autism.
I was reminded recently by a friend whose wife has a rather high degree of physical disability that one needs to be creative with social pursuits and hobbies in those situations. They are both addicted to Warcraft, which is an online role playing game that is very popular though it bores me to tears. But his principle is correct; social outlets are so important that you take them however you can, and we are lucky to have such opportunities in our present circumstances.
Last year I began a love affair with myspace that started as a chance to share a bit of our lives here with family and friends far away, and expanded into something so much more. My enthusiasm waned a bit as site content is not monitored nearly as much as I would like when it comes to a program that I encourage my children to use; there is way too much almost-porn on the site for my comfort, but I still get a lot out of it, and I will quote one of my blog entries from myspace from last year:
START
MYSPACE IS FUN. And you get to hang with your peeps when it's convenient for you. Like in the middle of the night when a toddler wakes you, or insomnia gets you, or the freaking dog won't stop barking, or when you have ten hours of work to do while the kids are sleeping and out of your hair. Myspace helps those make those moments much more bearable. So I will still be here on myspace, representing myself a little more personally now, and sharing my minute details when I feel like it.
I've been searching for some friends and family on myspace to see if I can find some people that I miss being out of touch with ... myspace does make it a lot easier to hang out with people online, which is great when you are all the way across the country from most of them. I have to credit my sister in law Hazel for convincing me to give it a thorough test drive.
MOST of the people I added as friends are ones that I know very well, or at least used to. I have added a local musician that I love plus my favorite health food store and a couple people connected to that, but, for the most part, my friends have a very personal connection to me, and I LOVE it. It's been really great finding friends from freaking elementary school, junior high, high school and college. Also some friends from the post college, pre Philadelphia work era. Some of them I found by accident while I was searching for someone else. Very very cool. I have a desire to kind of reconnect with people lately since I turned forty last year, and sort of almost but not really died. Let's just call it a too close for comfort brush by death.
I have kind of been out of the loop since my second son was born, but he's five now and I'm starting to have a little bit of time to think about something else. Mostly that time comes late at night, but all the more reason to myspace. It does seem like a verb to me.
Plus some really great friends of ours moved away last summer, and I miss them so much. I've convinced at least one of them to give it a try. Honestly, myspace is a good chance to build better relationships with ones not only far away who are near and dear or even just on the edge, but also with people right in front of my face or close to it. Lets face it, with my husband's long work hours/ horrendous commute, three kids I'm home schooling, and a couple family members with agoraphobia, plus a definite diabetes fatigue, I just don't get out much. And that isn't likely to change anytime soon. We haven't been to church in over a year. I've been out of the visiting circuit for so long that people far away are coming to see US.
Two years ago, my precious grandmother E died, and her funeral was almost an impromtu family reunion. My maternal grandfather's family has had an annual reunion for ages up near Allentown that came to a halt a few years back when the organizers at that time wisely gave over to their retirement years. My grandmother's funeral was a fortunate event in that it gave some of my cousins who had been knocking around the idea of starting up the reunion again the final motivation they needed to push forward.
In June 2005, the E family reunion was reborn thanks to my cousins K and B who spearheaded the event, and so many other relatives that were eager to contribute to the glorious occasion. We were all so happy to see each other, and it really punctuated for me how much less socializing I have done with my family since moving near to so many of them. Total irony.
The saddest part is that DH and I have sacrificed being near our immediate families to live out here and raise the kids in what we consider to be a friendlier family environment, close to much extended family, and yet we don't make the effort to see them. My mother comes to see US. Almost every week in fact. And while that's great, sadly, that is five other of our children's grandparents in L.A. that they rarely see, who I haven't seen myself in over three years. If I'm 40, they certainly aren't getting younger either. My next big push is to convince the grandparents to open myspace accounts. But I'm loving finding other relatives here now.
This also coincides with what would be my 25th high school reunion next year, if someone from my high school bothers to get one together. I didn't go to the 5th, 10th or 20th, and I have a feeling I may have to wait until 30 comes around. 2008 will also be the 25th year since I matriculated as a freshman at UCLA, and though I met many great people through the 7 years it took me to get a 4 year degree (finally graduating ELSEWHERE), the ones I think about most are four great girls I met (three were dorm mates) that year and didn't keep in touch with past 1990, though I bumped into one at Costco in 1996. Nostalgic? I think so. So far I've found 2 of them here.
Reconnecting with people on myspace in all the categories above has been so awesome, many of them don't have direct accounts, but their kids do! Even if some of the content on the kids' pages just grosses me out. And there are a lot of skanky people on myspace. Lord knows my privacy settings are all very high, and they need to be. But the younger generation has rekindled my hope for building on our relationships and reconnecting with their parents. Hopefully, together, we will get them all hooked I know I'm hooked.
END
I'm still going strong with myspace, I have over a thousand pix loaded there. I've been using email for what seems like an eternity, though I guess it's only been fifteen years plus a little. I was trying to remember the first internet service I had to no avail. I'm also on goodreads since last December. And now I'm starting blogger instead of just reading other users all the time. So I guess I'm embracing the online social movement, even though compared with the average age I'm a dinosaur. Truly, I don't know how I'd live without it now.
God is good and god is great, and so I thank him for the internet.
Thursday, August 28, 2008
The toll it takes
I took T to a church group last week that divides the kids into age groups and genders. One thing I can't stand about the traditional public school model is the segregation by age that is so unnatural in the rest of life's venues, and I think, harmful. At the same time I think it's probably necessary for safety reasons in the public schools as there is so little supervision of the kids who often interact in negative ways with each other; if bullying is a problem in same age peer groups, how much worse would it be in a mixed age group? But I totally digress here. Even though I have found a church or two that supports home schooling, and my own most frequented church of choice has a youth group that mixes ages 12-18, if I want T to be able to pick some of his own social activities, those same age, same gender experiences are likely to be a benefit in some ways in an environment where the people in charge don't know him well.
T had a great time at the group, so at least I should be grateful for that. Ironically, when the group leader asked for prayer requests, T asked for them all to pray for his mother, because there is "only one of her, and four of us." I can't even imagine what the leader must have thought of a statement like that, but it cracked me up. But lord knows I appreciate the prayers, especially when I would have expected him to say something like "please pray for me, because I'm starting school again soon, and I hate it. Plus I'm looking for a good new school for someone with asperger's." Well that's certainly something I've been praying about a lot recently.
It's true I need my own prayers though, and I have to learn to ask for it. On more than one occasion in the not too distant past, some people have recommended that I join a caregiver's support group, and even my doctor made some not to subtle comments about how talking to a "counselor" might help with some of the stress that a person who lives with four people with disabilities might feel. Well I am not proud, if I had the money and the time, I love therapy. But the point that I need to take better care of myself especially under these circumstances is well taken. I think it's a mother's universal lament that they are so busy trying to fulfill the needs of all the other family members that they don't have time for themselves or otherwise always put themselves at the bottom of the list. And it's stupid. Because if I had taken better care of myself, I would be a better wife and mother right now.
It's been just over a year since my mini stroke, and I don't really feel like I've made that much progress. I have worked really hard, so it's fairly frustrating. Here's what I wrote on myspace last year around this time:
START:
I have been getting a lot of questions about how my health is going recently. Back in May, I had what some doctors referred to as a possible "mini-stroke" or "TIA." Don't really care what it was called, but it sure was scary. My blood pressure was off the charts, and I didn't realize it until it felt like my head exploded. Anyway, a couple of doctor visits and diagnostic tests later, it turned out that I had very high blood sugar and very high cholesterol to go along with the high blood pressure. I usually get a physical every year, and last year I skipped it. I am pretty particular about not skipping it usually because there is a lot of disease in my genes. But last year was very hard. In fact, the last six years have been a real challenge, and last year was just the icing on the cake of stress. So I had no business skipping my physical, busy or not, and I paid for it, and worse, my family has really paid for it.
The good news is I didn't die. And my heart is in actually pretty good shape. The bad news is that I have type 2 diabetes, but I am absolutely determined to get rid of it. I have radically changed my eating habits (goodbye my favorite cherry coke - sob, sob), and I have been meticulous about eating when I'm supposed to, measuring my sugar levels, and taking appropriate therapeutic measures. I am learning more everyday. And while I've been feeling pretty cruddy, things are definitely looking up.
After three months of treatment, my 30 day sugar average is 139, my 14 day average is 134, and my 7 day average is 131. So the numbers are not only almost normal (normal range is 80 - 120), but they are still going down. Soon I may need no insulin or drugs at all. I keep a close watch on my blood pressure, and I only have to take medication for that on an "as needed" basis, which is almost never. I am doing some gross things (anybody care for the taste of pure apple cider vinegar?) and I keep trying more things. I am eating a lot more fruits and vegetables, and a lot less carbohydrates, especially simple carbohydrates.
So all in all it's pretty good news. And in the not too distant future, I look forward to saying "I used to be a type two diabetic, but not anymore!"
END
Well, my optimism was unfortunately misplaced. Because an average of my morning fasting and post prandial (two hours after eating) blood sugars ranges widely from 130 up to 155. I need MORE insulin now, not less. And I have definite long term nerve damage that is probably irreversible and makes my sugars a lot more erratic. I am going through early menopause due to all of this, and my fibromyalgia has kicked into overdrive. My diet has such a low percentage of carbohydrates in it that I needed to start eating more protein (mostly animal products, something I was previously trying to cut back on). With the weird hormonal changes that the descent into menopause causes, I suddenly gained twenty pounds in two months last spring, which is still with me, but fortunately has not increased at least. I am horribly fatigued. And thanks to the nerve damage, I wake up almost everyday with horrid nausea and pretty much have constant stomach pain. I will keep working on it, but it's frustrating for progress to be so slow or non existent after such a hard struggle.
I have a lot to be grateful for, and my faith has only increased in the face of all of this. I do need to make time to work on myself more. It's so hard to consider putting the kid's needs on hold while I make time for myself. I still haven't had a physical since last year, even though I've seen doctors more this year than in my whole life. That's just foolish, and I know it. But I have such a hard time keeping up with the bare minimums that adding more doctor's visits into the mix seems impossible. I wouldn't say that I'm depressed (I have been before, so I know the difference) but it is certainly easy to get discouraged right now. But with baby steps, and maybe some more prayer, I keep going forward.
T had a great time at the group, so at least I should be grateful for that. Ironically, when the group leader asked for prayer requests, T asked for them all to pray for his mother, because there is "only one of her, and four of us." I can't even imagine what the leader must have thought of a statement like that, but it cracked me up. But lord knows I appreciate the prayers, especially when I would have expected him to say something like "please pray for me, because I'm starting school again soon, and I hate it. Plus I'm looking for a good new school for someone with asperger's." Well that's certainly something I've been praying about a lot recently.
It's true I need my own prayers though, and I have to learn to ask for it. On more than one occasion in the not too distant past, some people have recommended that I join a caregiver's support group, and even my doctor made some not to subtle comments about how talking to a "counselor" might help with some of the stress that a person who lives with four people with disabilities might feel. Well I am not proud, if I had the money and the time, I love therapy. But the point that I need to take better care of myself especially under these circumstances is well taken. I think it's a mother's universal lament that they are so busy trying to fulfill the needs of all the other family members that they don't have time for themselves or otherwise always put themselves at the bottom of the list. And it's stupid. Because if I had taken better care of myself, I would be a better wife and mother right now.
It's been just over a year since my mini stroke, and I don't really feel like I've made that much progress. I have worked really hard, so it's fairly frustrating. Here's what I wrote on myspace last year around this time:
START:
I have been getting a lot of questions about how my health is going recently. Back in May, I had what some doctors referred to as a possible "mini-stroke" or "TIA." Don't really care what it was called, but it sure was scary. My blood pressure was off the charts, and I didn't realize it until it felt like my head exploded. Anyway, a couple of doctor visits and diagnostic tests later, it turned out that I had very high blood sugar and very high cholesterol to go along with the high blood pressure. I usually get a physical every year, and last year I skipped it. I am pretty particular about not skipping it usually because there is a lot of disease in my genes. But last year was very hard. In fact, the last six years have been a real challenge, and last year was just the icing on the cake of stress. So I had no business skipping my physical, busy or not, and I paid for it, and worse, my family has really paid for it.
The good news is I didn't die. And my heart is in actually pretty good shape. The bad news is that I have type 2 diabetes, but I am absolutely determined to get rid of it. I have radically changed my eating habits (goodbye my favorite cherry coke - sob, sob), and I have been meticulous about eating when I'm supposed to, measuring my sugar levels, and taking appropriate therapeutic measures. I am learning more everyday. And while I've been feeling pretty cruddy, things are definitely looking up.
After three months of treatment, my 30 day sugar average is 139, my 14 day average is 134, and my 7 day average is 131. So the numbers are not only almost normal (normal range is 80 - 120), but they are still going down. Soon I may need no insulin or drugs at all. I keep a close watch on my blood pressure, and I only have to take medication for that on an "as needed" basis, which is almost never. I am doing some gross things (anybody care for the taste of pure apple cider vinegar?) and I keep trying more things. I am eating a lot more fruits and vegetables, and a lot less carbohydrates, especially simple carbohydrates.
So all in all it's pretty good news. And in the not too distant future, I look forward to saying "I used to be a type two diabetic, but not anymore!"
END
Well, my optimism was unfortunately misplaced. Because an average of my morning fasting and post prandial (two hours after eating) blood sugars ranges widely from 130 up to 155. I need MORE insulin now, not less. And I have definite long term nerve damage that is probably irreversible and makes my sugars a lot more erratic. I am going through early menopause due to all of this, and my fibromyalgia has kicked into overdrive. My diet has such a low percentage of carbohydrates in it that I needed to start eating more protein (mostly animal products, something I was previously trying to cut back on). With the weird hormonal changes that the descent into menopause causes, I suddenly gained twenty pounds in two months last spring, which is still with me, but fortunately has not increased at least. I am horribly fatigued. And thanks to the nerve damage, I wake up almost everyday with horrid nausea and pretty much have constant stomach pain. I will keep working on it, but it's frustrating for progress to be so slow or non existent after such a hard struggle.
I have a lot to be grateful for, and my faith has only increased in the face of all of this. I do need to make time to work on myself more. It's so hard to consider putting the kid's needs on hold while I make time for myself. I still haven't had a physical since last year, even though I've seen doctors more this year than in my whole life. That's just foolish, and I know it. But I have such a hard time keeping up with the bare minimums that adding more doctor's visits into the mix seems impossible. I wouldn't say that I'm depressed (I have been before, so I know the difference) but it is certainly easy to get discouraged right now. But with baby steps, and maybe some more prayer, I keep going forward.
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