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.

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Small Adventures

Mac could see the pain in Janie’s eyes as he sat down across from her. He slid into the bench of the small booth in their favorite grill and took her in. Blood shot, tear stained eyes that longed for peace. She wore a loose plaid button down and the Marilyn Mansion shirt she had stolen from him to cover up the bruises on her arms and the port on her chest. Her hair hung loose around her face. She probably hadn’t even brushed it. He could see her shaking underneath the plaid button down—from pain and exhaustion. She had gotten out of bed to be here early enough to snag a good table and order before the grill closed for the night.

She smiled at him; a warm genuine smile that to most would look sincere—but not Mac. He didn’t need her to him how much pain she was in or how long it had been since she had slept, he already knew. When he had left her the day before she had said she’d be fine, but Mac new she had been lying. He hadn’t been upset for he knew she hadn’t been lying to him, she had been lying to herself. He also knew her roommate had to help her out of the shower this morning and that she probably hadn’t eaten anything since he saw her the day before.

Mac’s heart broke a little more in his chest, as it often did when he saw Janie this way. He wanted nothing more than to absorb her pain even if just for a short time to give her a few moments of relief. But there wasn’t anything he could do; there wasn’t anything any one could do.

Janie’s doctors had stopped looking for a cure and were now focused on pain management. He couldn’t fathom how she made it day to day, but she did. And he loved her for it. Mac had told Janie to stay home, but she hadn’t. She didn’t say why, but Mac knew—she didn’t want to be alone.

Janie would be sitting up in her room all night, fighting back tears of pain, anyways. At least here she could see his cute face and pretend to be normal.

Mac’s food had been waiting for him when he sat, being kept warm by a steaming skillet beneath a wooden plate. Janie had ordered him his favorite dish, a steaming plate of steak fajita’s and a small bowl of pasta for herself. Pasta was her go to comfort food, but she hadn’t touched it. Mac told himself she had been waiting for him, though he knew she probably didn’t feel like eating. She pushed the noodles around with her fork and looked up at Mac’s big brown eyes.

“Tell me about your day,” she pleaded. Distract me.

Mac thought for a moment. “It was pretty boring,” he admitted, and Janie’s eyes fell back to her plate. “But…” Mac continued trying to hide his smile, “I did manage to snag you an advanced copy of Horizon.”

Excitement sparkled in Janie’s eyes. After being diagnosed Janie began working from home. She had grown depressed being cooped within the walls of her apartment so her roommate turned her on to gaming. Janie spent hours tearing through every Play Station and X box game Tiana owned and eventually had run out of things to play. She ventured into his store one day looking for something new—that was how they met. Mac, seeing the exhaustion and pain in her eyes that longed for a new distraction, gave her his favorite Final Fantasy game and his number for when she finished.

A week later Janie returned begging for the next installment, officially addicted—and not just to the game.

Her illness had been hard for Mac to get used to; it was frustrating at first with her cancelling dates or shying away from his touch. It wasn’t until the first time he sat with her in the hospital that he finally understood. He had learned to watch her, know her telltale signs of pain. He had also learned that despite the illness she still strived to go out and do things, because she would be in pain either way.  Instead of roller blading around the park, they would have picnics instead. Instead of going out to dinner they would order in and have Netflix Marathons.

Only on good days would they be venturous—like the day Janie insisted they go to the aquarium. Janie didn’t like the ocean, she couldn’t even swim—but just for a moment they both had forgotten about Janie’s illness as they trotted through Denver’s aquarium hand in hand taking selfies with the giant fish and hired mermaids.

It was those good days that helped Mac through Janie’s bad days. Though there had been more bad days lately than good, he remembered Janie’s smile on every small adventure they went on and made it his personal goal to make her smile like that again and again because that was what made him happy.

As Janie smiled at him he ticked today off his mental calendar. Mission accomplished.

“How about we take this to go?” Mac couldn’t wait to see the wonder in her eyes as she saw the game on her 4k compatible screen. He wanted to watch her sit with her eyes closed and take in the music as it moved her soul.

Janie gave Mac a devious smile. Suddenly the pain and exhaustion in her eyes was replaced by a small sense of adventure.

She reached her arm out and stopped the waitress as she passed by. “Can we have the check please?”

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