I’ve been struggling to write this post for a couple of days now. But I just need to put this out there. The last month has been so up and down I don’t really know where I stand anymore.
I’ve been ignoring some symptoms because I’m happy. Actually, genuinely happy. There’s a damn good reason for that and I’ve been keeping it secret. But that little tiny secret isn’t so secret anymore and I now have some serious decisions to make–health wise.
I’ve spent a lot of time in bed recently. Because I just… can’t. That means no blogging, no writing and no video games. I’ve completely abandoned Twitch for now (not like I got that into it to begin with) and cosplay has become a mere memory to me. I still have several projects I’m working on, but they’ve been pushed to the side because my hands just can’t handle it right now. As sad as that sounds–I’m not actually that upset about it.
I’ve spent a lot of time catching up on cartoons and anime. I’ve gone on some spur of the moment adventures with a certain someone whom you will learn more about in another post, and Anita and I have been trading off being sick and taking care of each other.
It’s actually really funny because we both thought we were taking care of the other one. I thought she was worse off than me, and she thought I was worse off than her. So we both thought the other one needed help than we did. We laughed about it when we realized it, and since then we’ve just been getting sick constantly. I’ve been to the ER with Anita twice. I probably should have gone to the ER several times but I’m stubborn and have severe PTSD when it comes to hospitals–so I tough it out till I can get a doctor on the phone then send Anita to the pharmacy for steroids and BP pills.
I guess I should explain…If you follow me on Insta then you know I’ve decided to take a step back from social media just until I get my health under control.
It really isn’t that bad. But it’s bad enough that I can’t ignore those symptoms any more just because I’m finally happy with my life.
But you all know I moved. And with moving comes the ever looming search for doctors close to me. I love my team in Shreveport. And if I’ve learned anything from this month its that I can’t rely on being able to get a hold of my rheum or internist over the phone three hours away. I need someone here. So I made a few appointments. And I went. And I almost died.
I got in with this rheum associated with a major hospital in Uptown Dallas. I was told by his entire staff that he was the sweetest man ever and he had all these good reviews on health grades.. so I was kind of excited. But I get there, I wait FOREVER only for him to tell me I don’t even have RA before he did any blood work or imaging. I understand my Rheum had to do an ultrasound just to see what little inflammation I had, but it’s there. And I’m one criteria away from a full on Lupus diagnosis from three different specialists. I’m sorry, but fibro does not explain the amount of joint pain, nausea, dizziness and rashes I’ve been getting and ignoring. But alas–he orders basic labs and gives me a prescription for cymbalta. I figure, what do I have to lose?
I didn’t start the medication till after Fan Expo, and boy am I glad I did. Within two days of taking only 30mg once a day at night before bed, I was so dizzy I couldn’t even see straight. But I had no one to cover my shifts so I went in to work anyways. I had zero balance, zero appetite, my blood pressure was sky high and I was shaky as hell. Tiana, Jett and even my boss were screaming at me to go to the ER but I figured it was the medication so I called the rhuem back.
No answer. I leave a message. Two days later I get a text from my pharmacy saying that they have a new script for me. The same medication. Lower dose.
They didn’t even call me back! All I said in the message was that I didn’t feel right and that the medication was making me really sick–but not sick to my stomach. I asked them to please call me back, I left my work and my personal number and nothing. So I call my rheum in Shreveport. I talk to my nurse. She gets me in in three days. Sure, I have to drive all the way to my dads at 10 pm after my shift. And go to Shreveport at 8 am the next morning–but it was worth it.
More imaging. More blood work. Immediate treatment for high blood pressure, steroids, topical anti inflammatory gel script and an angry phone call from my rheum to the Dallas rheum later–I was on my way back to DFW. It took a little longer for results to come back, and when my nurse called me yesterday, the news wasn’t what we had hoped. All of that pain wasn’t fibro. My RA is active again. Still have a negative ANA factor but I have three or four other things that point to lupus. The main one being that my joints don’t swell on the outside. We have a few more things to try before my rheum will make that decision but I just don’t see how that other rheum couldn’t just look at the ultrasound results in my file. I had them sent over.
All of that and my blood pressure was still super high for someone who sits in the low side of the spectrum to begin with. It’s finally normal now, I still have to monitor it and I go back next week for another check up and more lab work just to make sure there’s no inflammation in the chest area. I’ve been having some trouble breathing too.. but mostly when I get too riled up.
I’m still looking for a rheum here, and an internist. But in case of an emergency there’s a clinic down the road that will call my doctors in Shreveport. In the two hospital visits with Anita, I spoke to the ER docs and they both said the same thing. So for now… I’ll be ok. I have Anita and Jett watching me (which is embarrassing but sometimes it’s nice for someone to just be like–I know you’re lying. Sit the fuck down and drink this damnit!)
I don’t mean to worry anyone. But with all of that and I’m still working–I’m tired all the time. I did get addicted to FFXIV–Thanks Jett–so I’ll write about that and some other things too. I’m not just laying in bed in total misery all the time–but I am too tired to do much else right now. I think I just need a few weeks to adjust.
I love you guys. And I have some goodies to post that aren’t traditional blog posts 😉 #creativewriting