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 sometimesĀ  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,

OXOXOXO

Kat

Disabled and Cute

Caution: Sensitive subject, ranting inevitable.

This week has been particularly difficult just mental health wise. Some things happened (not bad things) and I’ve finally decided to move out of my dad’s house this summer. Despite the exciting, life changing decision there’s been a few days with noticeable tension in the air that’s been particularly hard to cope with. I’ve been hibernating in my room instead of going out with Mac or Elsa. I’ve also been working non stop so I’ve been really tired but today I saw something on twitter that made me smile.

It was a hashtag. A spoonie/disabled/chronically ill hashtag and it’s beautiful. All around the world people are tweeting selfies and pictures of their disabled/spoonie/chronic life and fellow spoonies are commenting on how beautiful we are. #disabledandcute I’ve never considered myself disabled. I have one of those parking placards but I never use it because I’m not as bad off as someone with a wheelchair or cane so I park in the normal parking spots so others, who need them, can use them.

Call me stoic, courteous, stupid or whatever you like. On my worst days when I need that placard I don’t leave my bed so that only goes to prove that when people see me out and about they see the healthy me. The me on the outside, primped and polished, make up on point and a wardrobe to die for. (Seriously, don’t mean to brag but I get loads of compliments, even on my lazy days. Forever 21 guys…Forever 21…)

But I’m chronically ill. Chronically ill. I don’t think people get the terminology here. True I may not use a cane or a wheelchair–honestly I don’t think I could use a cane, my wrists cant take that sort of pressure–but I do have limits. This illness will never go away, it’s always there even on my good days lingering in the shadows of my happiness. It creeps up and bites me some times, and other times I’m prepared for when it rears it’s ugly head. I’ve managed to keep out of the hospital so far because I take care of myself but I do struggle every day.

Most days you’d never know I was in pain unless you hugged me too hard. Even on the days I feel like I’m dying, I get up…go to work and deal with it if I can. If I cant my boss sends me home. But he knows I’m trying. I cover up the dark circles left by painsomnia, wear loose slacks to hide the braces on both knees. I bite back the pain and blink away the tears to fool even the most important people in my life. It’s hard…believe me… it’s hard. But I manage, and I know my limits.

Does this make me disabled? I don’t really know. I don’t feel disabled, but maybe just because some days I can’t drive myself to work or open my ginger ale bottle this qualifies me for this prestigious club. I don’t have cute hospital selfies because the one time I was in the hospital I wasn’t thinking about selfies–I couldn’t even sit up. But that was a long time ago. Now, if I need medical attention I call up my doctor and fake it till she can get me in. Sometimes I get admitted for a few hours for an emergency IV bag of fluids or a CT but most of the time she sends me home with a prescription and a promise from my dad to keep an eye on me. She knows how much I despise hospitals, so she agreed to help keep me out. This new internist however is amazing, though since she changed my meds I’ve been ten times better.

So you can imagine how deciding to move out was a big decision? I live with my dad for several reasons, most of them being the fact he had medical experience and he keeps me cheerful. I wont be by myself, Anita–another amazing friend from school–will be my roommate and we will have so much fun playing video games in our nerd apartment. Between the Star War’s bathroom, the Star Trek couch pillows and my hundred and one Harry Potter, Doctor Who, and DC collectibles, we gonna be the talk of the nerd community. I’m currently saving for a new graphics card and a mount for the four piece wall screen šŸ˜‰ Good bye 180 degree view and hello 4K gaming!!

BTW finished the ME trilogy and I’m officially prepared for Andromeda. Gonna play around with Halo and DA:O until March 21st.

So yea… I wouldn’t say this was a rant really.. but I had a lot to say. I’m working on some creative pieces to post. I know I’ve been slacking and left some series hanging. I apologize. I’ve been writing a crossover with a friend and its been hogging all of my attention.

Any ways,

I love you all.

OXOXO

Kat