Better Late Than Never 

I just realised that it’s Thursday and I didn’t post on Monday. I apologise. A lot has happened this week, I had some job interviews, an article I wrote was published in a local newspaper, my best friend came into town.  Needless to say, I’ve been a little busy. Also Fibrofog has hit me hard this week. But I looked fabulous so who cares right?? 


I found a million reasons to hate the way I looked in this picture. I guess that’s one of the reasons I wasn’t hurrying to write this post. I’ve been forced to do a lot of soul searching this month. Figuring out who I am, what kind of career I want, and most importantly–am I going to let my illness get the better of me. 

I’ve been using my lack of employment and my illness[s] as an excuse not to make up my mind on a lot of things. I’ve enjoyed my impromptu vacation of sorts but I’m bored. And I lack the motivation to do something about it. I kept telling myself that I’m not physically capable of doing what I want. But that is a lie. I may not be right now but I will be. 

The outfit above was purchased in my favourite city: London. Just last year I was prancing down Oxford Street without a care in the world. So much has changed but I am determined to make it back to the UK. 

Everything was bought at H&M in London. Except my bag. I got that in the states recently. I don’t normally carry purses. In light of recent events, I have made some changes to my fashion go-to’s bc medications don’t fit in my collection of small hip bags. 

Have a wonderful weekend my loves. And remember, love who you are ❤️ 

OXOXO

Kat 

Sea Salt Sprays and the Andromeda Hoodie

Happy Memorial Day! I live in the states so it’s tradition to spend the weekend outdoors poolside and grilling if you can. Which is exactly what Anita and I did. 

I’ve been having some trouble with my anxiety as of late. It’s been harder to control it naturally, my essential oils and calming teas just weren’t cutting it anymore. I talked to my doctor about it but she suggested a new medication that I had been trying to avoid. So my soon to be roommate invited me to spend Memorial Day weekend with her and her family for a much needed weekend getaway. 

I was a little eerie about traveling especially after starting two new medications but I was equipped with my huzi designs infinity pillow, tummy friendly snacks and a brand new playlist courtesy of Spotify. We packed up after my sisters graduation and set out to Anita’s parents house where I was welcomed with open arms. 

I napped in the hammock, played video and board games with her brothers, lounged in the hot tub and slept on this ah-mazing tempurpedic mattress topper that was so soft yet firm. It was pure bliss. 

I spent the whole weekend in my expensive Italian bikini which unfortunately isnt pictured below for obvious reasons but I have been waiting for an opportunity to feature my favourite new hoodie. The sky was pretty cloudy so when we weren’t in the pool or the hot tub I sported my Andromeda Iniative zip up hoodie because I’m a huge nerd. 

Also, since both their pool and hot tub is a salt water system, my hair was in heaven as well. I didn’t have to worry about my new blonde locks turning green from chlorine. I simply sprayed my favourite sea salt spray in and worked some surfers paste through the ends for some perfect carefree beach waves. 

I really love this hoodie because it’s big and roomy but not so big as to where it’s in comfortable and frumpy. Unfortunately ThinkGeek doesn’t make hoodies any smaller than a medium (so I was told at Comic Con) but I’ve always liked my hoodies to be big on me. This one tends to slide down my shoulder so I look like an Ariana Grande wanna be but who cares. Anita’s family has two dogs and a cat so currently it’s covered in pet hair but I feel it adds a certain air of reality to the picture, no? 

As for the Not Your Mothers line, when I was in Phoenix and L.A. I tried everything from Bumble and Bumble to Organix and I just couldn’t find a brand I liked. A friend of mine swears by this line so I tried it and I am never going back. I liked the other brands but I found I constantly had to keep adding salt spray to my hair to keep it wavy then my hair would have a light film of product on it. 

The Not Your Mothers line has a ton of great products that are affordable and of great quality. I’ve since recommended it to my friends and they all love it as well. I have natural surfer waves thanks to my dad and I feel that these products bring out the natural waves beautifully. 

I had a wonderful weekend with Anita’s family and I hope all of you enjoyed your holidays as well. ❤️ 

With love, 

OXOXO

Kat 

The Secret Life of an Independent Spoonie 

Hey WildeKats

I have a confession. 

I know when I write I usually paint this pretty picture where I’m full of motivation, strong and I’m busy kicking serious chronic illness tushy in killer-but comfy-outfits. And as much as I hate to break the euphoric bubble–I’m not actually like that most of the time. 

I use this blog to boost my own mood and to motivate myself. John Steinbeck once wrote a series of writing tips, one of which said to forget your generalised audience. He said that writing to all the faceless people who you hope to read your work is terrifying. Instead you should pick one person and write to them. 

Well. I write to myself. You are your worst critique and potentially you’re own greatest fan. 

In reality my life kind of sucks. Restless nights because of insomnia, pain riddled days, I’m pretty sure my prefrontal cortex forgot how to convert short term memory to long term memory and I’m nauseous all the time. This puts a big strainer on my social life. When I do venture out into the great beyond I usually end up spending two days in bed recovering. The many people who know me personally, they never see this person. The me that’s constantly beat down, sleeps in the bathroom and sips Gatorade just to stay somewhat healthy. 

I don’t have the luxury of a esteemed loved one who takes care of me. I pretty much do everything on my own. Yea, I have my dad and he’s great. But aside from reminding me to take my meds and keeping me company he pretty much keeps to himself. I have friends, many of whom have their own lives and illnesses. I don’t mind taking care of myself, I’m painfully independent. Besides I already have a husband, two boyfriends and a Turian lover courtesy of BIOWARE. 

I often find myself typing depressing posts and ultimately delete them because I’ve convinced myself that no one cares. But I care. I go back and read past posts about those days where I kicked RA and Fibro in the ass. I go back and remember how good I felt or how brave I was. 

I constantly have to talk myself into getting out of bed, remind myself to breathe and that I am not alone. I have all of you, and the countless other spoonies out there. Though I often tell them I’m fine. Not sure who I’m trying to convince with that, me or them… but sometimes it’s true. 

Sure I think it would be nice to have someone willing to sit with me on the bathroom floor all night, but until I find such a person I shall have to do it myself. I’ll have a cat soon, maybe he/she can be my knight in furry armour. 

Stay strong WildeKats and never stop fighting.

Oxoxo 

Kat

Spoonies Don’t Always Know We’re Sick

I figured I’d give an update since I had two doctor’s appointments earlier this week and I went in again today last minute.

Officially I’ve been diagnosed with Fibromyalgia AND Rheumatoid Arthritis. They’re checking my ANA every couple of months because Lupus does run in my family just in case.

I would first like to say I LOVE MY DOCTORS. I called this morning around nine and they had me on the schedule at ten thirty. I had to have my dad drive me but just the fact they got me in so quickly is just amazing to me. Also a big thank you to my dad. I don’t know where I’d be without him driving me places because my hands hurt, making me tea and threatening to take me to the hospital if I don’t call my doctor.

For about a month I’ve been having dizzy spells accompanied by nausea and severe headaches. At first I thought it was a side effect so I brought it up to the rheumatologist on Tuesday but she said because I take most of my pills at night that they shouldn’t make me dizzy during the day. I had to go home from work yesterday because I thought I was going to pass out; I was in a lot of pain but I was dizzy, my ears were ringing and my head was pounding. Woke up this morning (or rather got up–because what spoonie actually sleeps all through the night?) and no change what so ever. In fact, I was worse. Tossed my breakfast, ran into the wall and couldn’t even stand for more than a few minutes. I’m hard headed; like to deal with things on my own if at all possible but this was so abnormal for me.

Needless to day, despite how ridiculous I felt for going in complaining of a headache and what not my doctor was very concerned about my blood pressure. My body temp stays at 96-97 and I do have low blood pressure but not low enough to be concerned about. Today however, I had a temp of 99.1 and lower than normal blood pressure even for me–also possibly dehydrated as well. I’m lucky I talked her out of admitting me right then and there. Once her initial examination was complete, she found some fluid in my ears and a white spot on my throat with some evidence of drainage.

Final verdict was (on top of having Fibro and RA symptoms today) was Strep, vertigo and low blood pressure. All of which would cause nausea, dizziness and headaches. So I’m not a crazy hypochondriac. WHOOP. I got two shots, a round of antibiotics and a lecture about not drinking enough fluids then she sent me on my merry way after she made my dad promise to watch me. Currently I’m in bed and that’s where I shall remain until tomorrow.

Being a spoonie is not fun. Its frightening actually. I’ve never had symptoms like this, ever, so you can imagine why I was so freaked out about feeling so dizzy. But to have a team of doctors that listens, understands and looks for underlying causes of even the simplest symptoms is great. One of my doctors (the one I saw today) actually has fibro as well. She said something to me that made me want to hug her. “I’ve found that people like us–with an autoimmune or pain disorder–often don’t even know we’re sick because we feel bad all the time. Sometimes we don’t even present certain symptoms, so I know exactly how you feel.”

I can’t tell you how true that is. Since beginning my diagnosis journey, I’ve had a lung infection, pneumonia, laryngitis and now strep. I never once ran a fever with the lung infection or the walking pneumonia and my cough wasn’t even that bad. My oxygen count was a bit low but not enough to be worried about.  When I got laryngitis over New Years my throat didn’t hurt–I just couldn’t talk. Same thing with this strep. My throat doesn’t hurt, I’m not congested or anything. I don’t even know how I caught it. I haven’t jumped on the mask band wagon yet.. but I’m about to because I don’t know if I can handle another lung infection and the flu is going around as well.

But just because we don’t have all the symptoms doesn’t mean we’re not sick. If you feel at all ill or off or like you may have something it is okay to go to the doctor. They’re there for a reason. This was a hard lesson to learn but just knowing that my doctors would never laugh at me for coming in with trivial symptoms is very comforting. No one expects you to power through even a cold–especially spoonies. But it’s hard to know when you’re actually sick when you feel bad all the time. I thought the dizzy spells were a side effect of a medication I’m taking–turns out it’s not.

A headache is sometimes just a headache, but sometimes it’s not. It’s very important to know you’re body, limits and triggers so that when odd symptoms do arise you’ll know how to deal with them. I know so many of you personally and a whole lot more only through social media–we all try to be strong way to much. We all try to deal with things on our own, especially something simple. Take care of yourselves, my loves. I know sometimes it’s hard, but it is important.

With love,

OXOXO

Kat

P.S. I ordered my first Spoonie Essentials Box today!! I will do a reveal when it comes in and talk a little about the project. But here’s a link to their site.

Motivation: Keep Fighting. Never Give In

Happy World Poetry Day my Loves!

I don’t write poetry, I don’t even enjoy reading it that much so I will not be posting any haiku’s or riveting stanzas today. But I will be posting at least one creative piece. I have several so I just have to decide which one I hate the least–just kidding I love them all. Not really… some are just plain awful but I won’t post those.

Any who, I’ve been seeing a lot of different posts on my twitter feed about motivation and what spoonies–or anyone really–do to stay motivated. Jem from Imagination Within asked about music, another blog asked about motivational quotes. I even think the Forbe’s one word topic for today was “motivation”. For some people their motivation is their loved ones, for some it’s their job. My favorite quote is this: “Don’t compare your chapter one to someone else’s chapter twenty”–unknown. As a writer I feel this one hit it’s mark.

Me, I write when I’m motivated but what keeps me motivated? I had to stop and think about this one. When I was answering Jem’s question for her podcast I talked about my love for soft-Indie and classical music. Laurel is currently my favorite. I’ll add a link at the bottom for her spotify page–she’s absolutely fantastic. I’ve ranted about music before, or rather raved about it, but is music what really keepss me motivated to keep fighting?

I like to think I’m just stubborn. My father raised me to fight for what I wanted, to never settle. To be strong and independent. On the day I fight my hardest just to breathe I always find myself thinking something along the lines of ‘I will not be broken’ mainly out of spite. This illness took nearly everything from me. It’s put a halt on my dreams, severed friendships and has made me second guess every choice I’ve ever made about my future. But then I remember what my father taught me. I’ve been a daddy’s girl since I could walk. I wouldn’t say he’s my motivation, but every time I feel like giving in I remember he taught me to fight, so I fight. I had dreams, I want to save the world–I can’t do that from my bedroom. So amidst all the pain, nausea, side effects and sleepless nights I’m striving to continue my education so I can get a job in my field. It wont be the job I wanted, but it will still make a difference.

Music defintley fuels my fire though. I find comfort in many genre’s, jazz, rock, classical–even Irish and German music. It just depends on my mood that day. When I need major motivation or a pick me up I turn to my favorite rock artists, Black Veil Brides, Disturbed, Juliet Simms, Adelitas Way, Nothing More, Gemini Syndrome and the like. I’ve found rock music–though it can be a little much at times–holds more comfort in the way of lyrics.

“Take joy in who you are, we know our wings are flawed!”–BVB, Fallen Angels.

“Sometimes darkness can show you the light.”–Disturbed, The Light

“It’s no mistake, you are perfect, you are perfect in my mind…”–Gemini Sydrome, Stardust

I could go on all day.

Then there’s days where I just need to feel…heroic, epic, enlightened… so classical comes to save the day. I love soundtrack music–Hanz Zimmer, Steve Jablonsky, James Newton Howard, John Williams. Then there’s the classics–Shostakovitch, Tchaikovsky, Mendelssohn.

And then of course I love Ariana, Selena, Ruelle, Flurie, Laurel, Lindsey…some days I just need my girls, ya know?

Music is a great way to keep yourself calm, motivated and even distracted. I listen to spotify in the store to keep me from having an anxiety attack. I have music going in the background at home for the same reason. Music I guess keeps me calm, it helps me think clearly and most of all it helps me write.

What about you? Any particular artist keep you grounded? Do you do something specific to keep yourself calm and motivated to fight?

As always,

OXOXOX

Love,

Kat

 

Laurel’s spotify :https://open.spotify.com/artist/6y6iXD929Jqq0xc6lgwhl1

Her Youtube: https://www.youtube.com/user/LaurelVEVO

This Week–I Loose

First of I’m just going to say I’m writing this post from my phone because my laptop is in the living room and I’m in bed completely miserable. So I apologoze for typos. My fingers are swollen 😅

I had all of these plans to post supportive posts for fellow spoonies and talk about how my illness will not defeat me but this week… yeah did not happen. I got a lovely phone call from my doctor and will be going in next week to see a blood specialist and discuss treatment options. They won’t tell me for what exactly but I’m guessing my internist finally found evidence of inflammation and is gonna get her way.

The rhematolgist was convinced its fibro which is bad enough. But my internist thinks it’s still lupus or rheumatoid arthritis maybe even all three (is that even possible?). Won’t know anything concrete till Tuesday so Ima just lay in bed all weekend. Can it be Saturday already?

My sisters will be here this weekend which is good because I need my cuddle buddies.

Its been a rough week. Aside from the obvious chronic illness struggles, Mac broke up with me(I wasn’t upset at all. It was a very mature and reasonable break-up but I was nauseous and wanted to throw up on him anyways), I might very possibly lose the best job I’ve ever had and now I have these weird symptoms that even for me are abnormal. I’m hoping it’s just stress but I live with my dad–a naval medic–and he keeps threatening to take me to the hospital. I’ve cried myself to sleep two nights in a row and slept very little all week. I was unable to call in to work bc we were short handed, so being on my feet doesn’t help.

So this week. My illness is winning. Well done chronic illness–well done. But no worries WildeKats, I am not giving up. Next week is a new week and I have every intention of owning it. And next week I will post more creative writing tidbits 😘😘

I love you all so much.

Oxoxo

Kat

Life Update: Fibromyalgia and Pain Management

Well WildeKats…

Looks like I officially get to be apart of the surprisingly large group of people who call them selves FibroWarriors. Do I get a pin or something? Chronically Fabulous maybe…or Sick Club? Fibro Chic? No? Okay then…

Spent the better part of the day at the Rheumatologist. I had a pressure point exam, ultra sound of my wrist and fingers and some other lab work done as well as a very informative lecture about Fibromyalgia–mostly stuff I already knew because of my dad’s ex-girlfriend has Fibro. Also a lot of you spoonies have Fibro and have been wonderful in my diagnosis journey.

I’m a little relived that they’re leaning away from Lupus but also a bit nervous and depressed because there are less treatment options for fibro than lupus and other autoimmune diseases. My internist didn’t want to go the fibro route because I’m young, fairly active and I don’t have all the symptoms (no IBS–yet–thank God!). But the Rhematologist is almost positive its fibro, but she is ruling out everything else before making a final diagnosis. Fibro would account for my widespread pain and chest pain but I’d rather her rule out everything else first.  She also told me to do some research, look into a yoga class and also for a physical therapist. The sad thing is, they’ve stopped looking at pain reduction and are now looking into pain management. And this is why:

Fibromyalgia is a pain disorder, not an autoimmune disease. Now this doesn’t make me(or any of you) any less of a spoonie than before. It’s still a chronic illness, just not an autoimmune illness. The fatigue, horrible pain, allodynia(did I spell that right?), light and temperature sensitivity are awful things to live with–which is why some people make major life style changes because of this.

I used to run, dance and weight train in my early college days, not to mention I was working retail and tossing around fifty pound bags of dog food every day. But as the symptoms got more intense I sort of fell out of my routine because it hurt so much to even stand. Supposedly, if you stick with it your body gets used to it and the pain actually improves so I guess its worth a try, right? I’m also looking into vitamins to help battle the fatigue since I’m probably going to have to weed caffeine out of my diet. *sobs*

I don’t exactly eat healthy…I mean…I don’t eat junk food. But my eating habits aren’t healthy. When you’re in a lot of pain, food is the last thing on your mind. I usually get nauseous when I hurt really bad so I rely on peanut butter, bananas and string cheese to get me through the day. That’s not a lot of protein. Apparently loosing thirty pounds in nine months with no noticeable life style change other than my no meat rule isn’t healthy either. This prompted my doctor to recommend me to a blood specialist–just in case. I also received a lecture about making sure I eat properly.

I am going to focus more on healthy substitutes for what I call my ‘spoonie diet’. I’m currently on a quinoa and black bean kick, I just I hate cooking. Never fear! I have it all planned out, when Anita and I move in together she will cook all the veggies in the world for me because she doesn’t eat meat either. Together we will make each other healthier. #spooniesunite!

I’m going to get back to my research and morning decaffeinated tea. I’ll write again soon. Promise.

oxoxoxo

Kat