This blog is to keep track of my writing (from Oct. '14 onward), saving tips and tricks I find, little rants or raves, and so on. If you don't like it, kindly leave. I am a fangirl and reviewer, so do tend to post on that note as well.
Over the past few weeks, I've had a tough situation on my back that I've hefted around. It's been a struggle, yes, and I think I've whined enough to myself that I can finally just breathe and say... this may not be your next trip to Hell yet.
If you know me, you may know I have JDM. It's this trippy disease that is often mistaken for Lupus, but since before 2008, my local clinic had mistaken it for constipation... Two totally different things. Moving on.
Since late 2008, I've had to manage myself, my lifestyle, my medication, my choices. JDM is an auto-immune disease where my oh so lovely immune system decided to malfunction and turn on my tissues and muscles. Quickly add up how much of that is your body and think for a moment. No one ever seemed to stop and think, "Well if it is most of her body getting attacked and losing what's there... isn't that serious? Isn't that a chronic illness?" I'll tell you something... no they did not. It was often compared to diabetes, or arthritis, or constipation like my local clinic said. But none of those attack most of my body and destroy the skin and muscles, do they?
From 2008 until now, 2016, I've faced off with the devilish disease I've come to know and despise. But it will always be my favorite life coach, because it taught me so much more than I think I would have ever learned without it. And no matter how braggy or self-absorbed I may sound by saying that... it's the truth to me. So, Zoe, why continue on with this document? There's a problem, that's why. Since the moment I got to meet the specialty doctors at OU Children's in OKC, I have been on Solumedrol (steroids) and various medications. Ups and downs... many problems and trials and treatments. And over the years, I was never stable enough to function, I just tried to move on and find that special thing I called "being normal", which never seemed to fit me just right.
I'm 19 now. An adult. I knew my SoonerCare (insurance) would be cut off once I reached this wonderful inbetween age. And yet... I had no warning. They waited a month until after I was aged up, sent a bill with a message, and I felt like someone threw another brick of reality straight at my face.
This entire year has been chaos. From stress levels going crazy, to my hormones malfunctioning on their own, to my medicines semi-failing and making me more sick than anything... It had to be now that I was cut off and left for the sharks. I'm not pointing direct fingers and I'm not throwing a pity party. I'd just like to share my experience. And how it's shaping me already.
I fought and fought to tell others how much they take for granted because for eight years I struggled to walk. I struggled to swallow at points. I had contractures in my muscles. I was filled with such anxiety and depression that I swore I'd never reach 18. I was called things and told things and buried alive and I am still thankful for having this disease so I can learn... but at such a crucial time in my life... when my meds were already going bat-shit crazy, and my body wasn't liking it anyways, I'm no longer able to receive my normal IV treatments. I've never gone over a month without them. I've usually stayed on the "every two weeks" treatment plan. Eight years of major IV treatments every two weeks... think about it.
For those who asked about me, thank you. I think I'm more worried with stress over getting some form of insurance back than anything. And I know my family is too. My treatments are too expensive, and going to OKC and back was already costing a lot. Now $500 a month for pills, extra doses of oral steroids that have made this past week as horrible as any experience. But what can you do? I know there are worse people out there and I pray for them, not me. But you can't help but think, in the moments when you feel crappy or want to cry... the one step forward, two steps back; fall down seven times, stand up eight mantras aren't really helping boost my mood.
I'm okay. I'll be okay for now. But the whole point is... well... my life is in the midst of change. After eight years, I'm cold turkey on IVs. I'm using Prednisone (at 60mg) every day, which is making me icky and feeling like a bag or garbage all the time... and my mood swings are now worse than ever. And no matter how many times I apologize, I still feel like some monster when I scream or yell at anyone just because these pills make me go insane for brief moments. It's like teenage hormones... minus acne.
But I still repeat, for now, I'm okay. My JDM is stable enough and if all else fails... I can go to OU and be admitted as a patient for treatments. Which I don't want, because I hated going anyways, and even now I'm not sure when I should or what the signs may be. If that makes sense.
I'm thankful for well wishes, prayers, kind words, and so much more that have been provided since this delimma has popped up.
In all honesty, I am scared, yes. I've never been too stable on JDM, it's always been an out-of-whack disease and never settled for long. Waiting for the other shoe to drop has been a repeat thing for me for all these years and I can't help but wait and wait for it to happen again. Only because it's happened so much already. But, maybe, all will go well. I am merely a month -- trying out the three week IVs just before I was dropped, so my body is still a bit used to every two weeks I think -- since my last IV treatments. Two weeks off. Prednisone up. Anxiety up. Stress up. Hope up. Faith up. And I've read nearly too many books for my own good in this time frame. 26.
So, thanks to all. I love everyone dearly and can never say it enough. <3
If you have any questions, comment here, or go on my Facebook page or to the Zoe's JDM page this is posted to. ^__^
Until next time...
-- Zoe.
8/30/16 update:
The pills are dragging me down a lot. I'm getting more headaches, nausea, and fatigued. I sleep a lot, but then again, I can be just restless. The overall feeling from the steroids are kind of blending together, but it just makes me feel icky and... gross all the time. Plus, it's never fun to wake up and take pills that taste horrid before you eat. I can never manage to get the taste gone until noon...
Over the past few weeks, I've had a tough situation on my back that I've hefted around. It's been a struggle, yes, and I think I've whined enough to myself that I can finally just breathe and say... this may not be your next trip to Hell yet.
If you know me, you may know I have JDM. It's this trippy disease that is often mistaken for Lupus, but since before 2008, my local clinic had mistaken it for constipation... Two totally different things. Moving on.
Since late 2008, I've had to manage myself, my lifestyle, my medication, my choices. JDM is an auto-immune disease where my oh so lovely immune system decided to malfunction and turn on my tissues and muscles. Quickly add up how much of that is your body and think for a moment. No one ever seemed to stop and think, "Well if it is most of her body getting attacked and losing what's there... isn't that serious? Isn't that a chronic illness?" I'll tell you something... no they did not. It was often compared to diabetes, or arthritis, or constipation like my local clinic said. But none of those attack most of my body and destroy the skin and muscles, do they?
From 2008 until now, 2016, I've faced off with the devilish disease I've come to know and despise. But it will always be my favorite life coach, because it taught me so much more than I think I would have ever learned without it. And no matter how braggy or self-absorbed I may sound by saying that... it's the truth to me. So, Zoe, why continue on with this document? There's a problem, that's why. Since the moment I got to meet the specialty doctors at OU Children's in OKC, I have been on Solumedrol (steroids) and various medications. Ups and downs... many problems and trials and treatments. And over the years, I was never stable enough to function, I just tried to move on and find that special thing I called "being normal", which never seemed to fit me just right.
I'm 19 now. An adult. I knew my SoonerCare (insurance) would be cut off once I reached this wonderful inbetween age. And yet... I had no warning. They waited a month until after I was aged up, sent a bill with a message, and I felt like someone threw another brick of reality straight at my face.
This entire year has been chaos. From stress levels going crazy, to my hormones malfunctioning on their own, to my medicines semi-failing and making me more sick than anything... It had to be now that I was cut off and left for the sharks. I'm not pointing direct fingers and I'm not throwing a pity party. I'd just like to share my experience. And how it's shaping me already.
I fought and fought to tell others how much they take for granted because for eight years I struggled to walk. I struggled to swallow at points. I had contractures in my muscles. I was filled with such anxiety and depression that I swore I'd never reach 18. I was called things and told things and buried alive and I am still thankful for having this disease so I can learn... but at such a crucial time in my life... when my meds were already going bat-shit crazy, and my body wasn't liking it anyways, I'm no longer able to receive my normal IV treatments. I've never gone over a month without them. I've usually stayed on the "every two weeks" treatment plan. Eight years of major IV treatments every two weeks... think about it.
For those who asked about me, thank you. I think I'm more worried with stress over getting some form of insurance back than anything. And I know my family is too. My treatments are too expensive, and going to OKC and back was already costing a lot. Now $500 a month for pills, extra doses of oral steroids that have made this past week as horrible as any experience. But what can you do? I know there are worse people out there and I pray for them, not me. But you can't help but think, in the moments when you feel crappy or want to cry... the one step forward, two steps back; fall down seven times, stand up eight mantras aren't really helping boost my mood.
I'm okay. I'll be okay for now. But the whole point is... well... my life is in the midst of change. After eight years, I'm cold turkey on IVs. I'm using Prednisone (at 60mg) every day, which is making me icky and feeling like a bag or garbage all the time... and my mood swings are now worse than ever. And no matter how many times I apologize, I still feel like some monster when I scream or yell at anyone just because these pills make me go insane for brief moments. It's like teenage hormones... minus acne.
But I still repeat, for now, I'm okay. My JDM is stable enough and if all else fails... I can go to OU and be admitted as a patient for treatments. Which I don't want, because I hated going anyways, and even now I'm not sure when I should or what the signs may be. If that makes sense.
I'm thankful for well wishes, prayers, kind words, and so much more that have been provided since this delimma has popped up.
In all honesty, I am scared, yes. I've never been too stable on JDM, it's always been an out-of-whack disease and never settled for long. Waiting for the other shoe to drop has been a repeat thing for me for all these years and I can't help but wait and wait for it to happen again. Only because it's happened so much already. But, maybe, all will go well. I am merely a month -- trying out the three week IVs just before I was dropped, so my body is still a bit used to every two weeks I think -- since my last IV treatments. Two weeks off. Prednisone up. Anxiety up. Stress up. Hope up. Faith up. And I've read nearly too many books for my own good in this time frame. 26.
So, thanks to all. I love everyone dearly and can never say it enough. <3
If you have any questions, comment here, or go on my Facebook page or to the Zoe's JDM page this is posted to. ^__^
Until next time...
-- Zoe.
8/30/16 update:
The pills are dragging me down a lot. I'm getting more headaches, nausea, and fatigued. I sleep a lot, but then again, I can be just restless. The overall feeling from the steroids are kind of blending together, but it just makes me feel icky and... gross all the time. Plus, it's never fun to wake up and take pills that taste horrid before you eat. I can never manage to get the taste gone until noon...
Name: Zoe Patterson
Known as: Cat Lady - jk! KissDromeda, KissDromedaGirl, Juliane (rp), Hyunchul 현철(rp), Sohee/소희.
Age: Nearly two decades old!
Lives at: Tumblr, AFF, blogspot, Twitter, and currently Evexia.
Country: USA
Favorite Colors: Pastels, Lilac, lavender, any shade of purple basically, white, silver, black, any shade of gray (however, Christian Grey isn't one), clear, any shade of blue, teal, coral, salmon.
Language: English (native), Korean (good enough), Spanish (good enough), intros in Italian, Japanese, Greek, and tagalog.
Hobbies: Writing (ofc), browsing the web, taking care of my cats, drawing, thinking up ideas, playing either Sims or Star Wars, reading, reviewing, dancing, singing, composing.
Favorite Quote: "If you believe in yourself, you're unstoppable."
Likes:
♥ Cats [this is a cat basecode so ofc this is here]
♥ Anything artistic
♥ Korean stuff, and many more cultures, too. I wanted to be an Egyptologist.
♥ Rapping and dancing; composing or choreographing
♥ Tumblr, Twitter, ifunny, etc.
Dislikes:
✖ Haters and fakers
✖ anxiety and depression [suffering from both]
✖ dealing with a lot of stress
Exchange Links
The current linked as "Zahra, Tsabbita, and DianeeyA' are the basecoders for this blog, so they get the creds! The rest are ones I like, my friends, and so on.
Random things since this is already here from the basecode. Check it out, and if it's empty, head on over to my Tumblr tags and browse around. eue Scroll down to the Others section!
I found myself in Wonderland, got back on my feet again - Alice by Avril Lavigne
Post a Comment