Being Invisible

Emily with Chronic Pain Bear

I'm going to start this post out that I'm not writing this to try and get sympathy. I just wanted to share some thoughts about how having an invisible illness can make you feel invisible sometimes.

I've talked about this a lot - how I suffer from daily chronic headaches that often turn into migraines. I'm sure a lot of people think it's probably no big deal. There are a lot of people who don't know what a migraine is, that it's much, much more than a bad headache. Because of this, it's not in the same ranking as other diseases out there.

Case in point, my husband got diagnosed with MS in January. It's a horrible debilitating disease, but at this point, he's ok. He's noticing some small things, but he hasn't had an episode in over a year. He did what he had to do - he changed his eating habits and started exercising. He's lost 50 to 60 pounds and is in the best shape he's been in since I've know him.

Me on the other hand, my pain levels have gotten worse. So much so, that I had to go to the ER a few weeks ago. I muddle through but there isn't anything that I can do because no treatment I've tried works. Can you guess who's health issue worries our loves more? Can you guess who gets more questions about the state of health? Hint, it's not me.

I don't begrudge Todd all the inquiries about his health. I worry about him too, but I live with him so I see that he's in much better shape that I am. For me, I'm just invisible.

I'm on several Facebook groups with other people with chronic pain. It seems like every week, someone is talking about how their spouse has left because they couldn't deal with the constant pain of their significant other. I'm very lucky to be married to Todd - we started dating when my pain first started. We've been together over a decade and our marriage is still strong.

Emily is also a blessing to me. Even though I probably should not have put my body through a pregnancy, I'm thankful every day for my little girl, even though I've been told that I shouldn't talk about my illness with her at all. She knows about my chronic though and I think it makes her a more compassionate person.

I also try to be a more compassionate person. I have several friends who suffer from chronic illness, and I try to keep up with how they are doing. I know how isolating it is to have a disease with no cure.

In the past, I've lost several friends in part because of my chronic pain. Even two so-called best friends. I know that my pain makes me flaky sometimes, but I'd love to be invited to things. If I feel well enough, I love getting out of the house and doing fun things.

My situation is complicated by the fact that I have to bring Emily with me just about everywhere I go because Todd works 2nd shift. She's old enough now that I can at least go to choir practice and Emily will sit quietly and color. But I tend not to go to the variety of geek stuff around town because Emily may be bored. I would love to be able to game again but I don't see that happening. I'd love to play board games, but most of our games really don't work well with just two people.

It really is a first world problem but it is one that it compounded by the fact that I'm invisible. If I keep having to cancel, I stop getting invited. I fade into the woodwork and am not thought of - at least that's how it feels.

When someone gets sick with something that is even vaguely treatable, it seems like people will flock to them. Keep up with their triumphs and their defeats. When someone has chronic pain, people are there at the beginning but then they fade away. I know it can be hard to deal with seeing a friend whose in pain, but think about how that friend must feel.

Now, I didn't really write this for myself. Yes, I get lonely sometimes. The vast majority of my friends live in the internet and I don't get out of the house a lot. But a lot of that is my own choice or a product of the situation I'm in right now with only one car and a husband who works 2nd shift.

But if you have a friend who has a chronic disease - something that they will be dealing with the rest of their life, try and remember to include them. Text or send an email to see how they are doing every once in a while. Try to keep them visible instead of letting them fade away.

Chronic Pain and Drug Use

Image: rockbox122.wordpress.com

I've talked about my chronic pain issues in the past. I can't take any preventive for my migraines - and I've tried just about everything. When my pain gets bad, all I can do is rest and rest and pray for the pain levels to go down.

I'm on several chronic pain and migraine support groups on Facebook, though I don't quite fit in. But I'm horrified to read the stories of people being denied treatment at the ER, from their doctors - all because the health care professionals are afraid that chronic pain patients are actually drug addicts.

A few weeks ago, I spent a week in really bad pain. None of my normal ways of coping was making this level 8 to 9 migraine go down at all. Finally I decided that I had suffered enough and we went to the ER.

I waited for three hours to be taken back, and when I was taken back there wasn't an open room. I was asked if I minded if I was just on a bed in the hallway. I didn't care, I just wanted to be treated. I got settled into bed, and I wasn't there very long when they wheeled another guy in and stuck him right by me.

He had called the ambulance because he also had a migraine. He got back around the time I did, but I got treated faster. I was given Dilaudid, which is a narcotic. That was exactly what the other guy wanted, and he started complaining bitterly that he was waiting to be treated.

The nurse brought him basically aspirin and saline. He demanded narcotics, and the nurse told him that his pain management doctor wouldn't allow him to have more narcotics and that he had been treated with Dilaudid two days before. He continued to complain about his pain, and the doctor came out and explained the same thing. When he realized that they wouldn't treat him the way he wanted, he took out his IV and left.

I felt bad for him, but Todd thought he was an addict. I do know that taking Dilaudid too much can lead to rebound migraines which are generally worse than the first migraine. that happened to me when my chronic pain first started.

Pain is awful and not being in pain can be addicting. I'd give just about anything to have the constant, daily pain go away for even a while. I'll never know what that guy's story was, but I hope he got some relief at some point.

Star Wars, NaNo and The Middle

Last week, I did something that I've been putting off. I finally showed Emily Star Wars.

I had been putting it off because Star Wars was my first real fandom. I was born in 1977 and my dad loved Star Wars. I grew up playing with Star Wars toys and one of my early memories is going to see Return of the Jedi in the theater. I wanted Emily to love it, or at least like it, so I kept putting it off and putting it off.

She really enjoyed it. We've only gotten through A New Hope but hopefully this weekend we will watch Empire and Jedi as well. Her favorite character is R2-D2 and she actually quote Star Wars to me out of the blue yesterday making my geek heart soar.

I do have a confession to make though. As a kid, I never really liked Empire Strikes Back too much. The majority of the movie is either Luke and Yoda training or everyone else running and hiding. To kid Mandy, all of this was boring. The best parts of the movie to kid Mandy were Hoth and Cloud City. I still loved Empire, but I loved A New Hope and Jedi more.

As an adult, I can see why Empire is so great. But childhood preferences still linger. As I was thinking about this, I came to a realization. Middles are hard and I'm not super fond of them.

I'm taking part in National Novel Writing Month for the 8th or 9th year. NaNo is where you try to write a 50,000 word novel in the month of November. I'm writing the middle book of my trilogy and the words have not been flowing. I came to the realization that the words might not be flowing because it's the middle!

I'm sure all the words will come out and I will continue to watch Empire Strikes Back. But it is funny how childhood preferences can hold over to adulthood.

Browncoat Ball 2014 - Saturday & Sunday

This is the 2nd post of my Browncoat Ball 2014 recap - click here to read the 1st post!

Saturday of the Ball dawned clear and cold. I was awake very early. I think I subconsciously didn't want to miss breakfast because it only went from 8:30 to 9:30.

Breakfast was a buffet and I ate about a pig's worth of bacon. I love bacon! For the rest of the morning, I helped move the vendor tables and  hung out in the game room.

Lunch was Asian inspired and our entertainment was the Fruity Oaty Girls. The same dancers who had done the Hulu and fire dancing did all kinds dances for us throughout the weekend. They actually painted themselves blue! They were super cute and their dancing was great.

We also did the next act of the murder mystery - it was a lot of fun. Especially since the ones of us taking part didn't know who did it.

After lunch, I went on a hayride. The fall colors were really beautiful and the ride was really

relaxing! I caught the end Craig Holcombe's geek comedy act and it was really funny!

I didn't do much the rest of the afternoon. My stomach was starting to not feel great so I just rested. When it was time, I got all gussied up. I was one of the first people who arrived to the hall where the Ball itself was happening. I got my picture taken and mingled before dinner.

Dinner was excellent, though my stomach was still not feeling great. During dinner we got to the next act of the murder mystery. Once that was done, another geek comedian, Art Sturtevant, took the stage. He was so funny!

Once Art was done, everyone who wanted got to learn how to do the Virginia Reel. I did this and a few of the other square dances but then I started to feel really sick. So I opted to go back to the cabin.

The main hall was the only place were wifi signal was good so I did linger a bit to download a book to the Kindle app on my phone. I wanted to rest up so I could go see Mikey Mason perform.

A bit of a side bar - I had been a fan of Mikey's for years but the fates didn't seem to want to let me see him perform live. Many years ago, a friend and I were going to Charlotte's CSTS where he was performing, and we had car troubles and didn't arrive until the middle of the movie. We missed Mikey though.

I wasn't going to let a stomach bug keep me from seeing him perform. So I left the Ball to go lay down for an hour. I still didn't feel great but I trekked up to the Fireside Hall and got a seat next to the fire.

Seeing Mikey Mason live was worth it! He is very talented and extremely funny! After his concert, I went back to lay down. Later I heard I missed the most epic karaoke ever, but I knew I wasn't up to.

I was only able to get a few hours of sleep. In the morning, I tried to eat a little but didn't put it. I was well enough to finish up the murder mystery. Alas, I was not the killer. I watched the raffle prizes be given out - though I didn't buy any raffle tickets.

Thankfully Todd and Emily came to get me pretty early. He got everything packed up from the carnival and Emily helped me take my stuff to the car.

Despite feeling ill on Saturday night, I really did have a great time! The Murder Mystery was a lot of fun and a great twist to make this Ball unique.

Veggie Tales and the Change of DOOM!

Have you heard of Veggie Tales? Cute cartoons that use animated vegetables that tell Bible and other stories to spread the word of God. Well apparently Veggie Tales has done something completely and utterly unforgivable.

They changed the art style.

Yep, that's it but it has people on the Veggie Tales website demanding that they go back to the old style. Saying that the Veggies look creepy, that the makers of Veggies are sellouts and one guy said the Veggies look like rapist. Yes, seriously!

Things change. I don't mind the new look. Yes, it's different but it's not bad. As shown in the comment from Facebook, Emily doesn't mind either. She's a big fan of Veggie Tales and I know she'll enjoy the new Netflix series that is coming out soon.

What do you all think of the new Veggie Tales? Is their look that horrible? I wonder if I'm missing something because I don't get the rage.

Christmas Overreach

I love Christmas. I want to get that out first thing. But I don't love Christmas in the beginning of November or in late October. I'm not even very fond of Christmas in July. But the Christmas overreach has been creeping in and taking over other holidays.

Yesterday I read and shared an article from Jezebel called Christmas Must Be Stopped. Let's Declare War on Christmas. The author talks about the war on Christmas being the overtaking of Thanksgiving and now even Halloween. She also mentions that too much of a good thing can be overwhelming. I totally agree with her.

When I was a kid, the Christmas stuff didn't show up in stores until around Thanksgiving. Black Friday was a thing but didn't happen until early Friday morning. My family had our own traditions. We stayed home on Thanksgiving, preferring to make the 3 hour trek to where most of our family lived for Christmas.

On Thanksgiving, we'd watch the Macy's Thanksgiving Day parade. We'd have a small lunch of cheese, crackers and summer sausage. While my mom got our feast ready, my dad would watch the Lions play football while my sister and I would decorate our rooms for Christmas.

Over the rest of the weekend, we'd go cut down our tree and and deck our halls. My mom loved Christmas so nearly every room of our house was decked. Christmas lasted all December and it was wonderful and joyous.

After my mom passed away, Christmas lost some of its' magic. When Emily was born, it regained some and we started up some of my old traditions. We do generally travel on Thanksgiving - either to see our family in GA or Charlotte. But we generally get our tree and our halls decked in late November / early December.

Once the end of December comes around, I'm ready for Christmas to be over with. Commercialization rules the roost instead of the birth of Christ (which is the reason for the season for us since we are Christians).

I refuse to do anything Christmas related until after Thanksgiving. The snow rule is the only exception and I've already used that up this year. So I'm all for a war on Christmas - go Halloween and Thanksgiving!

The Snow Rule

I may be a bit weird, but I make up little rules for myself. Usually to motivate myself into doing something. But the snow rule is different.

I don't remember when I came up with the snow rule, but it's been in effect for me for many years. The rule is simple - if it snows before Thanksgiving, I must watch a Christmas show.

Since moving to NC, I have not be subject to the Christmas rule. We don't get a ton of snow and usually any snow comes in January. But when I looked out my window this morning, the ground was white.

I'm not thrilled at snow so early in the year. But I will follow the snow rule and watch a Christmas show. Todd says we should watch Barney Christmas on Netflix, but that is not happening.