Flare Days and Super Grandma’s

Hey there WildeKats!

So last week I went to a friends dorm with every intention of posting a blog post about coping with stress and a chronic illness. Well–aside from the wifi issues and the few very cute distractions we had–I didn’t feel as if I had enough to write a post over. So I’ve been tweeting and asking my fellow spoonies for help. I don’t really cope with pain. I ignore it until I can’t any more, take my pain meds that only help a little then pray for sleep. This past week, that hasn’t worked.

I was hit with a flare pretty hard last week and I’m still in a lot of pain. I had an infusion about a week or so ago so my doctor doesn’t want to give me any more steroids. She upped my anti-inflammatories and gave me some mild muscle relaxers to help me sleep but I wouldn’t say any of it has really helped. Yesterday my family celebrated my birthday (I’m a whopping 23!) and I could barely function. I let the five year olds blow out my candles then I perched myself in my grandpa’s old recliner and played the Witcher 3 until I just couldn’t any more.

My mom drove me home, but I haven’t been able to sleep so I’m just sitting here reading fan fiction to distract myself. Later today I’m going to home depot to acquire some mattress foam, I may also try a bit of shopping to lift my spirits. Elsa is going with me, we’re spoonie buddies so she’ll be there to force me to leave if I get too tired or anything.

What really makes me mad though is how many people still just don’t understand. Mac has been great, but sometimes he just doesn’t get it. I can’t expect him to fully understand, but if I’m puking in the toilet, I don’t wanna take selfies, sext or even talk to you really, nothing personal but that’s just how it is. And during flare ups, I prefer to be in the care of either Anita, Elsa or one of my sisters because they know what to do, and they know my pain levels. I’m hoping Mac and I can get there some day, he comes in handy though when it’s just my dad at home and I’m stuck in the tub. I went to church yesterday to absorb what comfort I could and I just got so many comments, I was bewildered. I showed up with a blanket and a pillow, I was in a yoga skirt and vans. The pews at my old fashioned church are made of wood, I needed the pillow to lean on and the blanket to keep me from shaking. Older people always prefer it so cold and my poor fingers just can’t take it. Aside from my casual dress, I had family members and church family members asking me if I was planning on taking a nap during the ceremony. When I was at a loss for words, my mamaw set them straight.

But what erks me the most is that my mamaw has lupus too. She went through the same thing, and still sometimes  has to bring a pillow to sit on. Yet they still made comments when I couldn’t stand to sing or wouldn’t allow any one to hug me. My mamaw of course was my body guard, she told every one of those judgemental, nosy Christians that I had been diagnosed with a chronic illness and that they needed to mind their own business. GO MAMAW! My Papa also cleared me a path out of the church so I could beeline to my car. If I living with Anita doesn’t work out for any reason I’m moving in with them LOL, or at least that’s what they told me. I love my grandparents so much, between them and my friends, they’re the basis of my support system.

I was feeling terrible on Saturday but I needed to wash clothes–bad. So my mamaw coaxed me into coming to her house where she helped me wash my clothes, sheets and towels and she also fed me soothing, non tummy hurting food. She may have also found out that I’ve been living off of peanut butter and cheese again–which are both flare foods for fibro people–and forced me to eat a nice home cooked meal. Peanut butter and string cheese seem to be the only two things I can eat without throwing up most of the time, but there is no arguing with the Mamaw. She also bought the Witcher 3. So I played the play station, propped up on several pillows and a heating pad while my 65 year old grandmother with lupus, sjrogens, Rayanauds, sclerdoma, COPD, Gerds and several other autoimmune disorders, force fed me home made vegetable soup, did my laundry and basically babied me all day. I loved it. But in the end I opted to go home to my bed where I could wallow in misery in private. But she was there at church the next morning to shoo away anyone who questioned my odd behavior.

This woman is basically superwoman. She has raised three kids, ten grand kids, and six great grand kids all with several autoimmune disorders. Mamaw takes care of m papa with grace and flare–even when he’s being onry and annoying. She cooks almost every Sunday and hosts a number of people. She’s there during the week for soccer games, football games, plays, girl scout meetings, pep rally’s or random lunch/shopping dates. She randomly puts a twenty dollar bill in my wallet because she can, splurges on expensive gaming requirement to lure me to her house and also does every thing she can to convince me to live with her so she can take care of me. This woman has been there when my parents weren’t, she has a million grand kids to take care of and she manages to be there for me and for everyone else. My papa is great, and I love him to death, but even he would agree that Mamaw is the definition of a super hero. She doesn’t curse, use harsh words or hold a grudge. She is kind, forgiving and everything a grandmother should be.

She is the reason I have made it this far. I love her so much.

Ok, enough rambling. Next post I’m going to talk a bit about the ending of ME3, hopes for Andromeda, For Honor and The Witcher Games.

TTYL WildeKats,




Being a Christian vs. Going to Church 

I don’t normally voice my opinion on religion. It’s a sensitive topic for a lot of people and I hate trying to validate my opinions. I did go to a private religion based school but it was t for that reason. I have a very unorthodox view on religion and it just gets my goat when someone approaches me at work or even corners me at the store to tell me about Jesus. They don’t even phrase it that way anymore. They always ask “do you go to church.” 

Most of you have not had the pleasure of meeting me in person and those who have know that my facial expressions often get me in trouble. Sometimes it’s hilarious, other times my friends generally scatter and start searching for food or coffee as a peace offering. I’m also extremely stubborn and refuse to lie to people. When someone asks me if I have a boyfriend I say no because I enjoy being single (unless your the old bitties at my church, then yes I have a handsome boyfriend named Alistair Theren). If you ask what’s my favorite book I’ll say I have many-pick a genre. If you ask what I do for fun I’ll answer “I love to play video games!” Lying only gives a false persona and nam not embarrassed by who I am nor do I want to give someone the wrong idea about me. So when I get asked if I go to church my answer is: “No, no I don’t.” 

They never ask why, they never say “oh too bad,” their reply is always something along the lines of “you need to.” 

No. I don’t need to. I’d like to but my home church is 45 minutes away and I work on Sunday’s. 

Whoever has cornered me, today it was some 19 year old who comes into my store once a week just for something to do, then proceeds to tell me that if I did go to church my life would be on point. 

Today I changed my routine and asked this kid why it was so imparative I attend church. He told me that a life with God was the only life worth living. For him, I’m sure that’s true. This boy was very confused as to why I was shaking my head and kept trying to get me to see his point. Because he was so young and I have yet to anger anyone today I decided to give him my official opinion on ‘going to church’. 

“I’m sure loads of people feel that way, but I don’t.” I told him. “I grew up a back row baptist, I attended a Christian school and I have been to several churches all over the U.S. and all over the world. No two churches are alike–even within the same denomination–they teach from the same book but they all teach something different. Did you know there is a church not too far from here that locks the doors when the service begins and the pastor picks your marital partner for you.” I don’t know about you but this concerns me.

“I am a Christian but I’m not the same kind that you are. In Ecclisiates we are encouraged to find faith for yourself. And that’s what I did, and once I did I became a Christian. I became a better person and I don’t even go to church regularly. I take my bible with me everywhere. I look to it when I need comfort or enouragement that I can’t get from family or friends. But being a Christian is more than going to church and having the ability to quote scripture. It’s about being a good  person, spreading love, and treating everyone with respect. Not everyone is called to preach, and not everyone is ready to make the leap of faith. My dad is Agnistic, my mom is a baptist. I don’t know what I am but I’m comfortable with the relationship I have with God and that’s good enough for me.” 

The young man, having no rebuttle, smiled, shook my hand and left me in peace. I may have come on a little too strong but that’s just it–I am strong. I’m opinionated, stubborn and confident, sometimes maybe even intimidating but that’s who I am. 

I choose to lead by example. Yes, I cuss and I drink sometimes, I even have tattoos. But it was humanity that put weight behind ‘curse words’ and drinking can be done responsibly. As for my tats, those rules from the Old Testament were created for a race of people who worshipped deities by marking their bodies. Every tattoo I have means something to me, their my way of reminding myself (and others) I’m beautiful in every way and I want more. I treat everyone with respect until they loose that privilege. I work mainly in customer service for heavens sake and studied restorative justice practices, being nice is something I’m good at. It’s a skill that can’t always be learned. And most importantly, no where in the bible does it state blatantly that attending church is a requirement. 

Everyone, and I do mean everyone is entitled to their own opinions. It doesn’t matter if your episcopalian, Methodist, Catholic or whatever denomination you are; as long as your comfortable with your relationship with the Lord then your golden. It’s not my place to judge and it’s definitely not everyonelses even though there a plenty that think it is. 

So, for the love of God (pun intended) just be yourself and love life. And God if that’s your thing. 

Sorry for the rant (not really), WildeKat’s. 

I’m sending lots of love,