Saturday, May 23, 2015

Happy Memorial Day

*This post was first posted on BlogHer in 2013.

Did you know that the flag is only flown at half-staff on Memorial Day until noon? After that, it is raised to full staff to represent the hope we have for the future. So what can that tell us about how we should observe Memorial Day?

Raising the Flag

First, of course, there are customs to be observed, like visiting cemeteries to place flags on graves, visiting memorials, attending ceremonies, and flying the flag at half-staff until noon. These things remind us of our duty to honor our fallen soldiers. These customs remind us to take care of the families of our fallen soldiers. They remind us that there are disabled veterans who need our help slogging through the mess that is the VA. They remind us to appreciate our freedom just a little bit more.

Then, there is the celebration. You see, to me, watching that flag being raised to full-staff is a signal to celebrate. It tells me that our lives should not be spent lamenting the lost. It tells me that we should spend our lives honoring and celebrating the lives of those no longer with us, and part of the way we do that is to find joy in our own lives. Even in the midst of our struggles, we can find joy.

 So, today, as you go about your life. Remember the fallen. Remember the great sacrifice they made. Remember why they made it. Take a moment to find out what you can do to help the families of fallen soldiers. Then, celebrate their sacrifice by living as full a life as you can. Do not just walk through your life. Dance, baby, dance.

If you would like to donate to or volunteer with some great organizations that help military families, I would like to recommend the following. If you have a suggestion of a great military charity, please leave it in the comments. These just happen to be the organizations I am most familiar with, or have a special place in my heart.

Our Military Kids provides grants to allow children of National Guard members and Reservists to participate in extra activities while their parents are deployed, and for the children of wounded warriors. They provide support and recognition to military children to reduce the emotional impact of deployments. My family has directly benefited from this organization. They helped send Gabriel to Montpelier for his first archaeological dig, Xavier to Space Camp, and got Dominic started in dance.

Special Operations Warrior Foundation- According to their website “The Special Operations Warrior Foundation ensures full scholarship grants as well as educational and family counseling to the surviving children of Army, Navy, Air Force and Marine Corps special operations personnel who lose their lives in the line of duty and immediate financial assistance for severely wounded special operations personnel and their families.” This organization is one that is close to my heart, because it provides assistance that the larger, better known, and better funded organizations do not.

Fisher House- Another lesser known organization, at least among civilians. Fisher House provides housing, meals, and transportation for military families to be close to their soldiers during hospitalization for an illness, disease, or injury.

Thursday, May 21, 2015

Robo Diary

Report from the robot week 1
slightly controversial so please don't rage in the comments

Here's what I don't understand about humans:

  • they believe that life can only exist as we know it
  • it took them thousands of years to understand that they are not the center of the universe
  • they seem to need to destroy everything natural and replace it with fake un-renewable resources
  • they enjoy watching vast quantities of violence
  • they spend hours looking at tiny computer screens that have a limited life span when there is plenty to do around them
  • if you scale there existence down to 24 hours, they arrived here 2 hours ago, their industrial revolution began 30 seconds ago, and in that time they have destroyed half of their forests
  • they constantly want to obliterate things they don't agree with
  • despite all these facts they still exist, and they write fantastic books

there're some things for you to think about

Loui the Alien Robot.

*Editor's note: Xavier will be blogging as Loui the Alien Robot for a while. Enjoy.

Sunday, April 26, 2015

Mom Vacation

Wednesday morning, I got on a plane to Kansas to spend a week playing with fiber. These are a few pictures from my week so far. 

Tuesday, April 14, 2015

What Chronic Illness Means (To Me)

A year ago today. My brain felt like it was on fire from the medication they gave me. 
Part 1

Writing about my experience with chronic illness is difficult; I feel as though I'm baring my soul in a way I never have before, even after 8 years of blogging, and basically being open to writing about anything. I am sitting here with one thought running through my mind, "I don't know how to do this."

But that is how I've felt about this whole chronic illness business. I don't know how to live with chronic illness. I lost my drive to do anything, even knitting and reading. I certainly didn't feel like leaving the house. The majority of my contact with the outside world was through my computer. It is hard for me to make plans when I know that canceling them is not just a possibility, but a probability.

Hardest for me is that my relationship with my children has suffered. There have been entire months when I barely left my bed, and some of my children felt no desire to join me in my room to spend time with me. I feel like a burden to my family, them having to take care of me instead of me taking care of them.

For the last 8 months, my most prominent symptom has been extreme fatigue. I stopped exercising completely because exercising used two days worth of energy. One thirty minute walk would put me in bed for at least 48 hours afterward. Grocery shopping was impossible. Gary took over all the cooking and grocery shopping. Occasionally, I would go grocery shopping with Gary, following him around the grocery store like a lost puppy. When Gary went out of town, we ordered delivery, or he tried to buy enough groceries to last us the time he was gone. Gary was out of town most of this February, and there was some discussion about me using a motorized wheelchair cart so that I could go grocery shopping. I forgot this idea when I went to the grocery store. Xavier pushed the grocery cart and did much of the actual shopping. We have to go to three different grocery stores to find the products we need because of food allergies. That day, Xavier did all the shopping at the second store, while I sat at the front of the store. We skipped the third. Just driving to and from the grocery store, along with walking around the grocery store was fatiguing enough that I didn't know if I would be able to drive home. It was very scary.

When I first experienced symptoms, the most prominent one was speech problems. I would forget to finish a sentence, just stop talking in the middle of the sentence and have no idea what I was talking about. I began to slur my speech and stutter. It was incredibly difficult to get my thoughts from my mind to my mouth. It felt as though I had absolutely no control over my brain or body.

Shortly after I started experiencing speech problems, we had a social function to attend. Gary sat me next to a 'safe' friend. We had been friends for a few years, and she immediately started talking. Talking was what we both did best; well, it was what we both used to do best. I know longer did anything well except sleep. When I started trying to talk, she looked at me in horror. Within moments, my 'safe' friend had moved to another table, and I was left to sit alone.

That experience has exemplified what chronic illness means to me. I have lost friends, and family has become distant. It feels as though I have spent the last five years watching the world walk away.

To be continued.

Monday, April 13, 2015

Spring is Here

Playing in the rain in my new sandals
Three, maybe four, weeks ago, it was starting to get warmer as spring approached. As it got warmer, I had no sandals to put on. My feet started to cry out because they were starting to simmer and then to boil in my sneakers in the new heat. Every day when I was to go outside my feet would wail from the heat; they would sweat because they were confined in socks and shoes all day. But, one day I finally went to a shop and bought my feet a pair of sandals. My feet cried out with joy from the relief. A few weeks after I got my sandals, the store had a big sale which was very ironic because if I had waited a little longer I could have gotten them for cheaper. Ah well.

By Dominic

Friday, April 10, 2015

Help for the Haunted Review

Help For the Haunted by Tim Prasil is an incredible piece of work that shows both life during the Industrial Revolution, and the mysteries of the supernatural. The way in which the book is presented brings to mind the adventures of Sherlock Holmes and Watson, and the manner in which the supernatural is represented is completely unique. If you are a fan of mysteries or the supernatural, this book is an extremely good place to go that combines both in a humorous and innovative way.

Review by Gabriel

Wednesday, April 8, 2015

Waiting for the Good Days

If you've followed my blog for a while, you know that I have a chronic illness. What you may not realize is that I've been battling it almost non-stop for the last 5 years. I haven't really shared much with the wider world. It's been a private struggle.

Last year, I got a job working at Starbucks. I enjoyed my job, but was exhausted all the time. I'm talking about crippling exhaustion that had me in bed asleep within an hour of getting off work. Exhaustion that kept me from caring for my children, or going grocery shopping. I also started getting migraines. I ended up in the hospital after one made us think I was having a stroke. I quit my job after 9 months because of my health. I was literally unable to work. We thought I would be better if I could just be at home.

But, I wasn't. In fact, the migraines continued to get worse until we found out I am allergic to dairy. We had done extensive allergy testing some time ago, and nothing had shown up. It wasn't until they did an ultra-sensitive blood test, that our insurance doesn't even pay for because it is considered experimental, that we found out what food was causing the migraines.

(A small gripe here about the insurance agency. They would pay $180 for a visit to a neurologist who told me, "We just don't know what causes migraines," did not do any testing, and prescribed a horribly expensive medication, which insurance paid for, but they would not pay for an experimental allergy test. That test has saved them hundreds of dollars, since I am no longer visiting the neurologist, or taking migraine medicine. End gripe.)

But, even after the migraines stopped, I was still experiencing that crippling exhaustion. I could not exercise because even a light work out would send me into days of sleep. Grocery shopping was out of the question. Sometimes, I was able to go with Gary and just walk around the store, but mostly I stayed home.

Then, a new doctor (one my insurance won't pay for, but is actually an MD, go figure) did genetic testing on me. He was the one who found the dairy allergy, and he found that I have an MHTFR mutation that causes me to have trouble processing methyl folate. (I think that's right; don't quote me on it, though.) He put me on high doses of methyl folate, omega 3s (they weren't even registering in my blood work), and potassium.

Things got better. Not great, but better. I still wasn't grocery shopping, and if I was planning to go out of an evening, we planned it carefully so that I wouldn't have to drive at night. Did I mention that my eyesight got exponentially worse? I went from never having to wear glasses to wearing reading glasses to having an astigmatism that has me in glasses all the time in about a year. I can't drive at night because the headlights of the cars blind me, and because I'm always too tired to be out past dark anyway.

I would have several good days, then a horrible day where I could not get out of bed. I think that because of the good days, the bad days were worse. We would think I was getting better, when in fact, I was just having a good day.

And there's always the guilt. The guilt that I'm not able to do things with my family, cook breakfast (if I cook breakfast, that's it for the day), drive my kids places, being able to talk to Gary when he gets home from work, is ever present.

It seems there is never an answer. Every time we figure out one thing, another thing steps in to take its place, but we have recently found something that makes us cautiously optimistic about the future. To be continued (because I've been watching a lot of Grimm, and the writers like cliff hangers).

Part 2


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