Small Victories and Major Realizations

Think one of the best things that I've done this week is to get some speech recognition software. One of the problems I had in continuing on with blog postings was typing. Typing is very difficult with fibromyalgia and arthritis, however, speech-to-text is not as easy as you think it would be. Nevertheless, I decided to use this technology to help me post more on my blog communicate with other people.

In trying to focus on my own recovery and ways to make life easier, I realized it one of the biggest issues is (and always has been) food. It was so enlightening last night to watch the premiere of the new show “Addicted to Food.” I've known for years that I've used food as a coping mechanism, consciously even. I'm too old and have too many responsibilities to use as a vice stop things like drugs, alcohol, cigarettes, and other are you responsible behaviors area however one irresponsible behavior that I've continue to do is eat in a very unhealthy way. Considering I have diabetes, the way I eat is not only unhealthy, it is deadly. I am very inconsistent about eating; I eat randomly. Sometimes healthy, most times not.

A couple things have prompted this post today. One, as I mentioned earlier, was watching the show “Addicted to Food” last night. Then there was sitting in the family dressing room in Target today while my daughter was trying on her size 2 pants and getting a look at my thighs in the mirror…while sitting. Oh boy, not a sight I would recommend for the faint-of-heart! Then there is the almost constant pain in my hips, knees, ankles, and feet. Hard to know what is caused by the fibromyalgia and what is due to carrying around 240# on my 5’4” frame! I am still down from my highest weight. And, this is not really about weight. It is about feeling better!

As I sat and contemplated this, I absentmindedly grabbed a handful of GoodnPlentys (one of my favorites). I was chewing some in my mouth and looked at the ones in my hands. I thought to myself, are these worth DYING for?? Well, that was a little too abstract for my sugar-addled mind to fathom. So, I imagined someone had a gun to my head and told me if I picked up the GoodnPlentys, they would shoot me. It’s funny, but that made sense. It sunk in, and I walked to the trash and threw them away.

Small victory.

However, I am not celebrating yet, as I still have the bag of GoodnPlentys. I did not get rid of those yet. The thing I fear the most is the detox…the detox off sugar and simple carbs. The irritability. I mean, I have enough of that with the fibromyalgia as it is. I’m not sure how much more of the bitchy mom/wife my family can take!

So, I will vow to start blogging again, and to start increasing my blog following. I am going to set up a Facebook account soon for the The Petticoat Polymath. I hope to reach out more and use this blog for the reasons that I set it up for initially: accountability, community, education, and sometimes venting.

Thanks all for listening!

Jane

Rededication to this blog

Hello all,

I have neglected this blog recently, and I really miss posting here. Today, I am rededicating myself to this blog. I will find new followers and start following others. I will post on here, as you have seen me do before, my real life (pretty or not!). If you are just joining me, I hope you find something useful here! I am new to blogging, but I am learning every day.

My last blog post was in January and in February I had a car accident...actually, the person who hit me had the accident; I got the injuries! It has been a tough road to heal from the whiplash & associated problems. I am still going to the chiropractor seven months later. Have a lawsuit pending. So, that is about all I will say about that for now.

And, here is a report on Summer: Every summer I have the intention to work with my kids over the summer on their reading and math skills. We usually buy summer study books, flash cards, the whole shebang! And, as you might have guessed, usually the summer flies by and we rarely open the books. This year was similar, however, I decided several weeks ago that it was a conscious decision on my part to not push the kids and let them have fun this summer.

One of the reasons for this is our youngest will behaving surgery again (his 7th) at Shriner's Hospital and will be in a wheel chair for the first quarter of the school year. I wanted him to have some times to play all he wanted; run around, swim, and have fun. He will be having his heel cord lengthened (it is short now due to limb lengthening in 2008...he gained 1.5" in bone length, but the ligaments often don't stretch as well), and part of his femur straightened. So, he will be non-weight bearing for at least 6 weeks, hence the wheelchair. So, he has had a great summer, riding bikes, summer camps, going to the park, playing in the pool, etc.

Our second youngest (the one with autism) has had a great summer as well. In fact, he has grown a lot. He is nine. And, while it might be unusual for a parent of a nine-year-old to brag about these things, it is pretty amazing for him to be able to have done them: 1) he learned to ride a bike this summer. No training wheels, no crashing...he just took off & hasn't stopped since! He has had bikes for a long time now, but something just clicked this summer. 2) He also learned to tie his shoes!! He is very proud of that and now has to wear "tie" shoes everyday. 3) He is no longer in pull-up/good-nights at bedtime! Which saves us LOTS of money and him lots of embarrassment! 4) He is starting to play some team sports at the local boys & girls club. And, that is a big deal for a kid on the spectrum.

The grandbaby has grown by leaps & bounds. She is walking, running, laughing, and doing a little talking. She is funny and happy! The teenager has moved back to the town we lived in for 13 years prior to moving to this one (3 years ago) and moved in with a long-time family friend so she can go to school (community college) there since she took & passed her GED this spring.

Lots of changes and adjustments in our family. Fibromyaglia is mostly stable. Was diagnosed with type II diabetes last month. However, I also lost 30# after my diagnosis...still working on losing the rest!

That's all for now. I will try to post some "catch-ups" soon.
Best,
Jane

US does not support or help sustain families/children

OK, my posts are getting increasingly political (and awful soapbox-ey). But, so is all the other rhetoric in the country. When in Rome.... (oh, bad metaphor).

The following article motivated this post:

Parents Press for Autism Insurance Coverage

OK, I have been called a socialist before...and maybe I am. But I have my own opinions and ideas about raising children with disabilities (as I have had lots of experience with the sacrifices of that role).

I think we can insist on insurance covering autism all we want. I don't think succeeding in passing such bills is really going to help parents of autistic children that much. It is not just insurance coverage that is the problem. It is the governments utter lack of support for families, especially families with disabled children.

Much like many families with disabled children, we are in a financial shit-hole. I cannot work. That is mainly due to having two young sons with disabilities and only partially due to my own health issues. So, we only have one income. While my husband makes a rather good income in this state, our house payment is about 45% of his income. There are utilities, insurance, and other expenses before we even talk about credit card debt and groceries (one of our children is on a very special diet due to medical issues...food for him is not cheap)!

We are in the red every month. We are actually making pretty good progress on our Dave Ramsey program and have paid off a number of smaller credit cards but we have an amazingly long way to go! Additionally, we both have HUGE (and I mean HUGE!) student loans still in deferment and (at least my husband's) will be out of deferment soon. But, financially, we are the working poor.

Then there is gas. I drive up & down the state to give our kids treatment. Our younger son has had 2 surgeries in 3 weeks at Shiner's upstate...I cant even count the number of appointments we have had in the past couple months. Both the boys have speech therapy once a week, and one child has OT. There is a center for speech and occupational therapy in our town, but it is inundated with kids and we have been on the waiting list for almost a year with not even an assessment. So, we have to travel to another county ("downstate") to get ST & OT.

I attend a multitude of meetings at school. In fact, while we are waiting for a one-to-one aide for my youngest (currently in a wheel chair), I get to go to kindergarten with him if I want him to be able to attend school. My son with autism requires a constant communication and on-going team meetings with the school as well. When your child has autism, seldom can you get a whole plan for the year set, have everyone follow it, or, even have it actually work for the child all year long. It is all about adapting.

The toll this takes on parents and on a family is immeasurable. The added stress of constantly worring you are going to lose your home, car, or ability to feed your children is absolutely unbelievable, and no parent should have to go through that.

Some countries have a monthly subsidy for parents who stay home with their young children...even if they are NOT disabled. Additionally, these countries often increase that subsidy for parents of disabled children.

For all the moaning and preaching (mainly from conservatives) that one of the main problem with children nowadays is that they don't have a parent at home, that they are in daycare for too long and too early, that (god forbid) mom works as well as dad...etc etc, one would think that there would be some sort of solution to that problem proposed. But, no one that I have heard, in their infinte wisdom of childrearing, has given a solution other than bite that financial bullet & just let your spouse (read husband) work. Well, in today's financial crises how is that possible??

Unfortunately, most parents with children at home who have disabilities are too busy (and sleep deprived) to lobby Washington...and hey, kids can't even vote! So, why worry about them?