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

Thursday, April 2, 2015

Why Video Games are Good and Bad

Video Games are addicting, they waste time, and they don't affect children's behaviors. Video Games are to the modern children as reading books are to those people that were around before them; we enjoy them. They give stimulation, they give us something to do, and some of them actually teach lessons. I'm not saying you should play them all day long, the human body still needs physical exercise.


Some video games are violent, like Grand Theft Auto, Halo, Battlefield, and Call of Duty. Then there are some that expose you to other people through multiplayer: Minecraft, World Of Warcraft, Star Wars The Old Republic, and all those others I can't remember. They can expose you to war, mass killing, sexual junk, and absurd amounts of swearing.

However, some can teach you about life. Some are just fun! They have jokes, they have puzzles, and they have wonderful music. Some, like Typing of the Dead, teach you things, math, logic, science, grammar, typing, and history. I understand that some people say that they cause murders “Oh this person played Call Of Duty, and they killed someone at school. It must be the games fault.” There are studies that disprove this. Murders can be caused by just about anything these days. I understand that there are some games that have rape, murder, thievery, and downright indecency. Just avoid those; they'll go away with time.


There are good games out there, but the violent ones are more common because that's what people seem to want to play. If you avoid them, then other genres of games will come out. 

by Xavier

Wednesday, February 25, 2015

Listen to Your Mama

I know my children very well. That's not to say I don't know some things about them, we do not inhabit the same mind, after all. Thankfully. But, I've spent a huge amount of their lives with them, and I *do* know their reading preferences.

Dominic only likes comedy. He prefers it mixed with action, like in the Ranger's Apprentice and Brotherband series by John Flanagan (we really like the audiobooks for these, by the way, available on audible), but comedy is where it's at for him. He's also a huge fan of Anne McCaffrey, adventure with some comedy thrown in.

Xavier likes dystopian societies. He likes them for the first couple books, then ends up throwing the last one across the room, a boy after my own heart. (Have you ever noticed that many dystopian series come in trilogies?) He and Gabriel both have a love/hate relationship with emotional books.

Gabriel likes adventure books, things by Tom Clancy and Clive Cussler are favorite authors, with Sherlock Holmes being high on his list of series as well.

But, even though I've been teaching my children for 8 years, they still don't trust me. Maybe it's because I occasionally make them read things I know they'll dislike but that I think are important. Most recently, this was Roll of Thunder, Hear my Cr. I knew Xavier would hate it; he's just so incredibly empathetic that it would hurt him. It did. After he read it, however, I had him write about why he did or didn't like it, and why it's an important book to read even when you don't like it. He was on board with this and gave excellent reasons for both parts of the essay.

Still, I knew when I assigned "To Kill a Mockingbird" that he'd love it. Gabriel loved it. It is still one of my favorite all time books, and it fits Xavier's reading personality perfectly. Plus, I think it's an important book to read.

He balked. He drew the reading of that book out for three weeks, reading a few pages here and there, until I told him I wanted him to finish it this week. He still had more than half the book left to read when I left for work yesterday at 1:00. This was the text I received 2 hours later.

Yep. I know my kids.

*Affiliate links contained in this post. If you choose to purchase a book by clicking on one of the links, I will receive a small percentage of the sale price.

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