Normal People Sick

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Photo found on Unsplash. [A dog sprawled out on a bed, resting.]

9/19/17

Normal people sickness on top of chronic illness sickness. Why is this a thing?! Kick a girl while she’s down, why don’t ya!

For years my mom and I have suspected that I have an underlying autoimmune thing going on, we just don’t have a definitive diagnosis yet. We’re exploring the possibility of Mast Cell with my hematologist in PA, but that’s a whole different post for another time. If you don’t know what an autoimmune disorder means for my body, to put it very simply, I’m at an increased risk to catch whatever someone else has or recently had.

For example, my brother caught a respiratory infection from friends and I’ve been stuck in bed for four days filling up garbage bins with used tissues and empty Breakfast Essentials bottles. It ain’t pretty.

I have my first iron infusion since August on Thursday (yesterday, when you’re reading this) and I’m worried I won’t be well enough to go. Though I am feeling the tiniest bit better with every day that passes, I will be in a communal chemo/infusion room with other patients at greater risk of sickness like me and I don’t want to give them what I have. Also, with my immune system being attacked as it is right now trying to fight against the grossness going on with my body, I could catch something else and I’d really like to prevent that at all costs, ya know?

So what is it like to feel all of my usual symptoms plus normal people sickness? Short version? It’s hell. Long version? The second day of being able to do nothing but lay in bed (reclined, but not horizontal because otherwise I started choking), I felt so absolutely horrible that I did something I only do in desperate situations… I prayed. I’m typically not a super religious person, though I respect anyone who is, it’s simply not who I am. But I felt awful and I was desperate, so I prayed for the strength to endure what I was going through. Who knows if anyone was listening or if I was just talking to the Eli Manning poster on my wall, but I’m digressing.

So what specifically was I feeling that day? I had not really slept the night before because I had to blow my nose and/or cough every few minutes, which didn’t leave me much room to get comfy and fall asleep. I was too exhausted to move, my entire body was stiff and in pain, I had the cold sweats, my head felt like it was going to burst into flames, my throat lesions made another unwelcome appearance (they’ve since healed), I had a migraine, I couldn’t even think about food or I’d get nauseous, all of my chronic illnesses were in full “F U” mode, and the list goes on and on. Needless to say, it was not a good day. This was Sunday.

It’s Tuesday as I’m typing this and I feel so much better than last weekend. Still not 100%, but let’s be real. My 100% isn’t even 100%… I still sound muffled and nasal when I speak, but I can actually breathe out of my nose and my throat isn’t in pain anymore, so clearly I’m ready to take on the world again. I’m crossing my fingers and toes so that this mess will be cleared up by the time infusion day comes along, but I fear that it’s unlikely and I’ll have to reschedule. I desperately need the IV saline because if I wasn’t dehydrated before this cold (I was), I definitely am now.

This week has been awful, but I have hope that next week will be better.

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Metaphors, Similes, and Swearing: Life Is Like a GPS

 

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Photo by Jamez Picard on Unsplash. [Image Description: A heart drawn in white chalk on a wooden park bench.]

One of my larger goals for 2017 was to say yes to things more. To stop letting fear and anxiety control my life.

Yes, I will sing karaoke with you at the conference. Yes, I will dance my ass off at a nightclub. Yes, I will go see Lady GaGa in concert. Yes, I will finally open an Etsy shop. Yes, I will create a public Facebook page. Yes, I will go get sushi with my friends. Yes, I will put that on my blog. Yes, yes, yes, yes, yes!

How did I manage to suddenly be so brave after twenty years? Deep breaths and Tom Cruz in Risky Business saying “fuck it” over and over in my head. Mostly the breathing thing, though. Having chronic illnesses that give you a “go big or go home, life is too damn short” attitude also helps.

Wow, lots of cursing in this blog post…

…Fuck it.

After 9+ years of this whole chronic illness thing, I’m still trying to find that perfect balance of “know your limits” and “do it for the vine,” but somewhere along the way I think I confused knowing when to say no, with hiding behind the comfort and safety of laying in bed and watching Netflix. Anxiety took over and I was deep in the sea of denial. Yes, there are days where I can’t do anything but lay in bed and watch Netflix, and there are a lot of them, but at some point I’ve gotta live my life, too, you know? How am I ever going to have the future I’ve always dreamt about if I stay in limbo and don’t take steps to work toward those goals? Nobody can live my life for me…

Well. This blog post took a turn, didn’t it? Sometimes I don’t know what’s truly on my mind until I start writing and let the chips fall where they may. Highly recommend free writing or journaling if you need to sort some things out! Anywho, where was I? Right. Escaping limbo. That’s a hard nut to crack. I, myself, have struggled with it for twenty-one years. My health being in the toilet probably hasn’t been doing me any favors, either. If you can take anything at all from this post, chronic illness is like a GPS. Sometimes it’ll take you the long way, through every detour, stoplight, and construction area, but in the end you’ll get where you want to go. If you haven’t thrown the GPS straight out the window after it’s tenth round of “Recalculating, Recalculating, Recalculating” first.

August Goodreads Reading Wrap-Up

January | February | March | April | May | June | July | August | September/October

Disclaimer: I received Hollywood Homicide (Detective by Day #1) through NetGalley in exchange for an honest, unbiased review.


Hollywood Homicide (Detective by Day #1) by Kellye Garrett

[Image Description: Hollywood Homicide #1 cover art featuring artwork of Dayna, the main character.]

Title: Hollywood Homicide (Detective by Day #1)
Author: Kellye Garrett
Genre: Mystery
Average Rating: 4.45/5 stars
My Rating: 3.5/5 stars
Publication Date: August 8, 2017

 

Goodreads Description:
“Dayna Anderson doesn’t set out to solve a murder. All the semi-famous, mega-broke black actress wants is to help her parents keep their house. After witnessing a deadly hit-and-run, she figures pursuing the fifteen-grand reward isn’t the craziest thing a Hollywood actress has done for some cash.

But what starts as simply trying to remember a speeding car soon blossoms into a full-on investigation. As Dayna digs deeper into the victim’s life, she wants more than just reward money. She’s determined to find the poor woman’s killer too. When she connects the accident to a notorious Hollywood crime spree, Dayna chases down leads at paparazzi hot spots, celeb homes and movie premieres. She loves every second—until someone tries to kill her.

And there are no second takes in real life.”

My Thoughts:
I really, really wanted to love this book, but Hollywood Homicide just didn’t do it for me. Kellye Garrett made me love the characters, and love to hate the suspects, but the investigation itself was my least favourite part of the book. As this is the focal point of the series, you can see how my not enjoying it could be a problem… By the third almost-killer, I was ready for the investigation to be over and to read more about Dayna and her friends’ lives. Maybe mystery books are just not my thing, maybe you’ll have better luck than I did… Either way, I don’t see myself picking up the next book in Detective by Day series whenever it releases. With all of the above in mind, I absolutely loved the last scene! (Especially those fine two lines.) You’ll just have to read it to find out what I’m referring to!

Do I recommend this book? 50/50.
Will I be reading the rest of the series? No.

On Giving Your Body a Break

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Photo found on Unsplash. [Image Description: The foreground is blurred except for an open slit in a door, where a woman is resting on a bed.]

You know what’s great? A week of no doctor appointments! Ever since I started seeing my new specialists as an adult patient, I feel like I’ve been going, going, going without a break. Granted, I’m using this break to recover from the Lady GaGa concert on Monday night. This consists of laying in bed, watching Netflix, and trying to earn my dog’s love back. I’m usually home 24/7 with Milo while everyone else in the house comes and goes. I think he’s mad at me for leaving so often without him…

My five weeks of iron infusions ended on August 24th, where I met with my local hematologist, Dr. C, and she changed my treatment plan to monthly infusions and IV saline as needed (!!!). My arms are clear of bruises and, though I scar easily from hEDS, most of the needle marks are fading enough that anyone who’s not looking for them will hardly notice. I still have more blood work and scans to do for other doctors, but, at least for the next few days, I’m giving my body a much needed break.

I hope you’re all doing as well as you can be and finding time to give your own body a break. The line between pushing yourself to be able to live your life and overdoing it is very thin.