11/02/2015

Grieving the Life that Was

Yesterday was NOT a good day.  When I said I was going to start a blog, and I wasn’t going to sugar coat it, I meant it.  So, here you have it.

This Halloween weekend was pretty stressful for my husband. I think about the many hats he has to wear to make up for what I can’t do and it burdens my heart. Head cook, cleaner, shopper, fixer, child-watcher, drink fetcher, errand runner, homework helper, driver, moving sleeping kids in the middle of the night, dog care-taker, launderer . . . you get the idea. EVERYTHING! He works a full time job too and really he has no time to relax or unwind when he’s at home. No questions about it. He is a hero with the plasticity of Silly Puddy and the strength of Gorilla Glue.

I was tired of spending all of my time in bed away from the family. This morning, I just wanted to be in the living room with the family, drink my coffee, have my breakfast and check my email. You know, like a NORMAL person. My amazing husband made some muffins, just for me. It was off to a good start.

What better way to start your day off on the wrong foot than by getting an unfriendly message in your inbox. (Roll eyes. What is it now?) I get I’m a newbie to this whole “blog” thing. I get when you put yourself out there you open yourself up for criticism so you have to develop a tough skin. But, I’ll admit, I’m still learning the etiquette of blogging, learning the “rules." I'm still researching. I will have to practice shrugging things off. To sum it up, an admin removed me from a support group because this person disagreed with something I posted on my blog and felt that sharing my collected information (unrelated to said post) within the group was a conflict of interest because it was self-promotion for my blog. (Insert sarcasm HERE.) As you can see from the MANY ads on my page, I make a lot of money from my blog! I’ve also have published numerous expert books on Tarlov Cyst Disease that I’ve written in my spare time and am plugging for those in each post. My inbox is constantly flooded from companies asking me to review or promote their products! I’ll be honest. It hurt my feelings and felt like an attack.

One of the best quotes that someone told me once was, “You don’t have to agree with me. I don’t have to agree with you. But, that still doesn’t mean we can’t be friends.” Sadly, a majority of the population don’t know how to do that. Once they get their panties in a wad, they say, “I don’t want to play with you anymore,” and stomp off like little children as they take their toys home. I happen to be of the opinion that if we were only friends with people who agreed with us about everything all the time, we’d never have any friends. That would make for a pretty lonely world. I have a pretty open mind and am always willing to consider alternative angles or new information. I’m an analyzer. Part of this journey is educating myself and learning. I might learn new information that completely changes my opinion! I’m pretty sure there is a rule about that somewhere that says, as a woman, I’m entitled to change my opinion a minimum of 368 times a day! And, as the purpose of this blog indicates, I will be sharing what I learn as I go along for people to take it or leave it as they like.

Social Media can be a great place where people who have common struggles to come together to support each other. But, I’ve also learned that more often than not, drama gets stirred up and that happy place can quickly turn into a nuthouse. Which brings me to another good quote I heard once, “Everyone is a super hero while they are sitting behind their keyboard.” Meaning, people can be nasty and will say just about anything online that they would never say to your face. I’d love to see some statistics on how many people have experienced broken relationships because of Facebook.

Back to my rotten day... I already have enough crap I’m dealing with! So, forgive me if I’m not in the mood to play dodgeball with someone hurling more negativity or drama my way. As you can see, it started my day off on the wrong foot but, in retrospect, it’s been enlightening.

Next, just after reading that nice little message, my two boys were getting a little loud in the living room while my husband was trying to watch TV. FOR THE LOVE OF EVERYTHING HOLY, can we please just watch something that isn’t Spongebob or Mickey Mouse Clubhouse for once!?!? My husband told my 7 year-old to turn down the volume on his tablet. Unfortunately, he was so engrossed in his Lego Minecraft Video that he was tuning out everything Daddy was saying. So, as all of us with young children do from time to time, my husband snapped. So, that lead to a dramatic giant melt-down of tears, yelling, stomping to his room and a sprinkling of “I hate you"s along the way. Of course, he had to make his suffering as loud as possible to remind us all how miserably heart-broken he was. Meanwhile, the little one was in his face repeating “stawbewy milk” and “watch Mickey Mouse” like a broken record.

 My husband stood up and said, “I just can’t take this anymore! I’ve got to get out. I’m stressed, overwhelmed, depressed and just can't handle it anymore!” Even heroes have their breaking point. He was gone for two hours. All I could think about while he was gone was how my illness was putting such a huge burden on him and that all of this was because of me. Look at what this is doing to our family! He came back later and felt better after a break, but during the two hours he was away, I just sat and cried the whole time, wishing I could take care of our kids the way I used to. I just want our lives to be back to normal.

I talked to my TC friend in Texas who has lived this scenario many times and she said a prayer for me over the phone. I called my parents and asked if they could come take the kids out of the house for a while, just to give Michael a break. I just needed some alone time to get in a good cry.

On to the NEXT downer...  Typically, I would enjoy seeing all of my friends’ posts about their fun Halloween activities. But, as I was trolling scrolling along, I saw pictures of my friends having a great time, dressed up in their costumes at parties. Pictures of my friends at my college homecoming. I saw pictures of other parents taking their kids’ to our Church Trunk-or-Treat and all sort of other things we normally do with our kids. I know, if it weren’t for this stupid illness, I would have been right there beside them. For the first time since I’ve been down with this illness, everything really hit me hard and I started to grieve for the life I used to have. It’s getting hard to look past the present and envision the future we will have once this is all behind us. It’s time to separate myself from people who bring me down. Facebook and I need a little vacation. Take a deep breath. Re-center. Good. Now redirect your focus on the blessings and God’s hand guiding our family through this.


So, what did I learn?  
  • Don’t let other people’s negativity in your bubble.  
  • If you are going to write from your heart, and put yourself out there, you’re opening yourself up to criticism. So, be prepared to take it.
  • Turn to your friends of faith when you need support. Pray with them.
  • Ask for help, for those who will not ask for help for themselves, when they need it. :)
  • Accept things for what they are but don’t get stuck in the past or the present. For me, I need to remember there is still a future and, even though the present feels like forever at the moment, it will one day be the past. Things will change.
  • Shut the freakin' computer and walk away! Walk away. 



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