health, wellness

Confessions of a Spoonie: The Reality

So if you follow me on Instagram you may have noticed that I was posting lots of art work over like a two week span, well that’s because I was in the hospital for 2 weeks. I don’t tell anyone beyond my immediate family when I’m hospitalized and a comment from a friend recently made me wonder why I don’t tell my friends, not even my best friends. I think there is a bit of embarrassment there. It happens at least once a month and I just get tired of it all and oddly enough I’m not big on visitors, I guess because I don’t want people to see what actually hides behind the smile you see on Instagram.

This photo above is the truth, even when I’m smiling this is how my body feels. I feel tired, I’m in pain and I just want to sleep. This is the reality of being a spoonie, this is the reality of living with chronic illness, especially when it’s an invisible chronic illness because you don’t look sick.

So my last hospital admission was two week, that’s a long damn time to be in a bed in a room the size of a closet and being hooked to an IV 24/7. The highlight of my day was every 3 hours when my nurses would come in and give me my pain medication and I could have a quick chat with them. It’s almost sad that most of the nurses that treated me this admission knew me so we were able to talk to about things other than why I was in the hospital. They also knew that I’m a good patient… I’m a patient with a lot of patience. If they were busy and couldn’t get my medicine on time I never threw a fit, I guess that’s not the norm. I know how hard nurses work, I’m not going to get all pissy on them, what’s that going to get me?

So back to the artwork, the reason there was so much was because there was nothing else to do and I had to do something to keep my mind from turning to mush. And it became conversation pieces between me and my nurses and me and my doctors. I’m currently taking a summer class but it’s super chill and pretty easy and not a whole lot of work to do.

This particular admission they found a bit of fluid on my lung but thankfully it wasn’t enough where I needed a chest tube to drain it. Ive had a chest tube before and it is hands down the MOST painful thing ever, the pain is almost paralyzing. So praise God I didn’t need one this time. But apparently, the cause of this pneumonia was an sinus infection where the drainage drained into my lung instead of my stomach. I saw my specialist this morning and he has a long term plan on treating this, except it’s going to be a super fight with my insurance, but I have a feeling he will be successful. So there you go… confessions of a spoonie.

Now that I’m out of the hospital I’ll be posting on a more regular basis.

Do you have any questions for me? I’m an open book, the whole reason for this blog is to educate! Are you a spoonie and want to have your story featured here, leave me a comment.

I believe my next entry will be about the analog journal/planner system I use to track everything,

health, wellness

So what the hell is a Spoonie???

Unless you have a chronic illness, you have no idea what kind of hell it can truly be.

You feel like sh*! on any given day, any given hour in all honesty! Some months you have more bad days than good and you constantly feel like you are letting your loved ones down. Like today, my wonderful husband and I had planned to go to the Holocaust Museum. We got a late start because I spent the morning fighting with my insurance trying to get a vital medication approved. When I say vital, I mean vital… it allows my esophagus to behave and actually accept food and drink. My pharmacist is a wonderful man, and since I’d been without it for so long, he filled it for me and said he would deal with insurance later. We picked it up on our way to the metro and I took it right away. Unfortunately, I found out as the day progressed that it was going to take some time for it to begin working again.
Well, we got into the city just to find out that all of the museum tickets were gone for the day, so we were just going to walk around and take pictures. I’ve been a photographer since as long as I remember and now my husband is showing interest in the hobby too. Before we started our walk, I asked for a sit down so I could take a few of my medications in hopes it would settle my stomach enough that I could at least have a snack for some energy, but it went south quickly. I ended up vomiting while sitting on a bench in the middle of the DC Mall… I was ready to rally and continue our day but my husband seeing me sick, wanted to go home. I can’t understand how embarrassing it has to be for him to sit back and watch his wife throw up into a ziplock bag in public none the less. Once again… the chronic illness ruins the day. I told him I was ok, I was willing to rally because I wanted to be out of the house and most importantly, I wanted to spend time with him. I thought he’d be proud of me for being willing to power through even though I didn’t feel well, I haven’t felt well for days as a matter of fact. But for him… the day was over and I felt defeated.
Readers, please don’t get the wrong idea about my husband, he’s a wonderful man, he’s a war hero and continues to serve his community now as a Police Officer… he’s MY Hero… right there with my daddy!!! I have no doubt that he loves me very much and I love him very much, but this past year almost, I’ve been the sickest I’ve been since we met and it’s been a strain on our marriage, I mean, how can it not? But we are committed to each other, our marriage and the vows we made before God and our friends and families. There is a reason I put such emphasis on the word SICKNESS while saying my vows because I knew times like these would arise.

This is what someone with an INVISIBLE chronic illness AKA A Spoonie looks like… Looks can be deceiving and you never know what someone maybe hiding behind a smile. I can’t tell you all how many times I hear… Well you look great… you don’t look sick… Well thanks but I am and I currently feel like crap but thanks anyway!

So what the HELL is a Spoonie? You know those days where you feel so very frustrated and you may say something like… “I have 0 F’s left to give.” That’s how spoons are to the chronically ill. When you are having a particularly hard day, you may get to the point where you have no more spoons to give and that’s what it means to be a Spoonie. I’m going to be 100% with you all… I HATE being a Spoonie… I feel like being chronically ill has robbed me of so much in my life. But, I am a child of God and I know that He has a reason for all of this. I know I am not supposed to question God and I might not find out His reasoning until I reach heaven, but you better believe, it’ll be one of the first questions I ask Him… I have a LOT of questions for Him. So I thought I’d inaugurate my new blog on a personal note. You’ll learn more about me and my health journey as time goes on. Thank you for going on this journey with me. What topics would you like to see here on the blog??? Please share on social media as well… I need a platform because I have a lot to say, and I know my stories, knowledge, and struggles can help so many others out there. The URL is easy: (that’s it)