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.
For the past six months - starting between the end of July 2016 and August 2016, and temporarily ending with the new year - my life has been up and down with emotions, stress, and life in general. I was cut off of SoonerCare a year after I turned 18, I was taken off of my infusions (which I have never been off of for eight years), and I was put back on a common, but aggressive steroid called Prednisone... I don't have a good past with said medication. Aside from making me gain so much weight, I lost all confidence in myself, it usually messes up my GI (gastrointestinal system) tract and can give me ulcers. This time it was much, much worse and I haven't suffered so much from it than at this point in time.
Going off track for a moment; anyone who lives near me, or knows me, knows my feelings about our local clinic, which I call Choctaw Clinic (although it has an official name, but eh). They never diagnosed me with the proper diagnosis for years, always got things wrong, and caused problems for me since I was little. But I go there because I have Native American blood and they cover me and are supposed to take care of me, along with others. It wasn't until December of 2008 that a foreign doctor worked there and diagnosed me properly and sent me on my way to Oklahoma City, to a specialist, and my journey truly begins.
But now, however, I am back to the Choctaw Clinic and yet again... they have screwed me over. I'm sure I'm going to talk to Patient Relations about my new doctors, but we'll see. So far, my experience hasn't been great. Or even seemingly okay.
On Thursday, the 12th of January, I went back to OU for an adult version of my rheumatologist and had to redo all my history and see just what needed to be done. What exactly had changed in the past six months though? A lot. I was off of a less-aggressive and an IV form of steroid called Solumedrol. I was on IVIG, which was another common treatment for JDM patients (and it was starting to make me sick for the first time in years, so I'm not missing it, honestly.) I was on a different IV called Actemra; the OKC doctors recommended I start the shot version of Actemra, that adults usually take, compared to the one I was used to in IV form. Then, over time, I was on mixtures of drugs, to which my Choctaw doctors said weren't supposed to mix, weren't good for this situation, etc. I trust my OKC doctors much more, as they give me full information on everything they do, what the pills do, and so on. They even discussed the new biomarker that confirms a kid has JDM. My Choctaw doctors didn't even know about it.
Over at the Choctaw Clinic, I received a rather... shitty experience with a well-educated rheumy who was arrogant, rude, and overall negative towards me. Let's note that he had two files on me: my last two infusion info sheets from OKC in June and July. That's all he knew. He knew my name, sure. He knew I had JDM, okay. But nothing else. We discussed past medicines and why we stopped them. We discussed a lot. But, much like one doc at OKC, he wanted to know why I wasn't on methotrexate. Methotrexate is a common treatment amongst JDM patients as well. But over three-four years of me taking it, it started having no effect, was making me very sick, and was damaging my liver. But he wants me back on it and says my past results mean nothing. Just because it made me sick for years, doesn't mean it still will. We technically won't know until we try, but if the-- I don't know. I don't want to rant so much and cause more stress. But that was barely the surface of my treatment. I wasn't granted to get my port flushed again (I have had it done once in six months and recommended I do it every month; it's due), I was treated like I was dumb, knew nothing, and even though I know my own body and how it reacts (even with backup from previous records), I technically "know nothing" it seems. And even though we sent the records to the Choctaw Clinic, this specific doc said nothing was there.
Now, moving on to the thing I despise: I was refused to be taken off of Prednisone even though it is damaging my stomach, GI tract, gallbladder, etc. My pills won't work now. I was told I didn't need my IV infusions anymore, but he "wasn't sure, but knew enough [he] could tell" and that just irritated me.
Side note: every time we started weaning me off of IVs or certain meds, that's when my body reacts. Over the past three years, I have done fairly well and it's all thanks to Dr. Sestak. But now, without her, in a different place, and with all these different people trying to treat me, my mind is in so many places. I've always had negative effects to being off of Solumedrol or IVIG or even Actemra now. But with the replacement of Prednisone, we aren't sure what would happen. But with the terrible side effects of my Prednisone... what are we to do? That's up to them and their solution is to not check on my GI and to continue Prednisone since I'm well enough now.
The only changes I really got was a new blood pressure pill, I was allowed Flexeril for now, and since I'll be attending a behavioral health appointment today, I'll see if I'm allowed my other anxiety meds or what. My stress levels have been over the moon and I'm a ball of emotions, but, you know, that's fine for now.
I don't know how to organize all the facts, or what to say, but I'm truly disappointed and hope I can call and change things for the better. Never have I experienced anything good at the Choctaw Clinic unless it is the new ER center, the women's health center- nothing else goes good and it pisses me off to no end.
But, thanks to the Choctaw's... I'm pretty sure my new docs see me as the girl who refuses to take her meds (since I'm so against prednisone) and drugs herself (since I require so many meds for anxiety). They really make me feel great.
Compared to OKC, I feel dumb, insecure, and barely get to speak up at the Choctaw's with my new rheumy. And if you know me... you know I speak my mind and am loud. But when a doc comes in and treats you in such a way... what can I do when my anxiety goes up and my mind shuts off? Thankfully I've had amazing family go with me in case that happens and they always speak up if I space out. Due to my OKC rheumy vs. my Choctaw rheumy... I'm not totally sure of my treatment, but my Choctaw doc seems to think their consultation with OKC is just me going there to confirm I have JDM and he will not take their advice or anything. Brilliant, right?
So far though, I have Gabapentin at 600mg twice a day and an extra 300 mg pill at night; Lexapro, Lisinopril(?), Flexeril (muscle relaxer), protonix, sulcrafate (1 gram 4 times a day), levora (birth control that had to be adjusted thanks to my stress levels), plaquenil, prednisone (decreased thanks to my nagging). >> I was additionally on Effexor, klonopin, and another one, but I currently can't think. >> I was on three IVs.
Also, may I note that I finally got a flu shot (after years of being told I can't, which I agree with) and it made me so sick I couldn't function and wanted to go to the ER so badly. Yes, it wasn't the flu shot specifically, but since my immune system is so wonky and messed up... it activated it (which isn't always good) to make antibodies to protect me for a possible flu case in the future (that's what the shot does) and it made me sick. Even allergies have made me intensely sick. I was swollen, had a giant knot on my arm (the size of my shoulder), had chills, fever, was nauseated, and so on. But, y'know, forced to get it basically. Also go the pneumonia shot, but it wasn't a problem. Summed up update:
New doctors are rude, I got sick thanks to one of them, I was refused IV treatment I've been on for 8 years, I wasn't allowed to get off of a med that is making me sick, my GI problems are getting worse and they want to wait (yet again) to see what is wrong, even though I keep going to the ER; I still have no insurance but the Choctaws are paying for everything. I've been to two-three docs in the past two weeks and it hasn't been as well since both fought over my treatment. Is that all? I think so.
Thank you~ 안녕~
For the past six months - starting between the end of July 2016 and August 2016, and temporarily ending with the new year - my life has been up and down with emotions, stress, and life in general. I was cut off of SoonerCare a year after I turned 18, I was taken off of my infusions (which I have never been off of for eight years), and I was put back on a common, but aggressive steroid called Prednisone... I don't have a good past with said medication. Aside from making me gain so much weight, I lost all confidence in myself, it usually messes up my GI (gastrointestinal system) tract and can give me ulcers. This time it was much, much worse and I haven't suffered so much from it than at this point in time.
Going off track for a moment; anyone who lives near me, or knows me, knows my feelings about our local clinic, which I call Choctaw Clinic (although it has an official name, but eh). They never diagnosed me with the proper diagnosis for years, always got things wrong, and caused problems for me since I was little. But I go there because I have Native American blood and they cover me and are supposed to take care of me, along with others. It wasn't until December of 2008 that a foreign doctor worked there and diagnosed me properly and sent me on my way to Oklahoma City, to a specialist, and my journey truly begins.
But now, however, I am back to the Choctaw Clinic and yet again... they have screwed me over. I'm sure I'm going to talk to Patient Relations about my new doctors, but we'll see. So far, my experience hasn't been great. Or even seemingly okay.
On Thursday, the 12th of January, I went back to OU for an adult version of my rheumatologist and had to redo all my history and see just what needed to be done. What exactly had changed in the past six months though? A lot. I was off of a less-aggressive and an IV form of steroid called Solumedrol. I was on IVIG, which was another common treatment for JDM patients (and it was starting to make me sick for the first time in years, so I'm not missing it, honestly.) I was on a different IV called Actemra; the OKC doctors recommended I start the shot version of Actemra, that adults usually take, compared to the one I was used to in IV form. Then, over time, I was on mixtures of drugs, to which my Choctaw doctors said weren't supposed to mix, weren't good for this situation, etc. I trust my OKC doctors much more, as they give me full information on everything they do, what the pills do, and so on. They even discussed the new biomarker that confirms a kid has JDM. My Choctaw doctors didn't even know about it.
Over at the Choctaw Clinic, I received a rather... shitty experience with a well-educated rheumy who was arrogant, rude, and overall negative towards me. Let's note that he had two files on me: my last two infusion info sheets from OKC in June and July. That's all he knew. He knew my name, sure. He knew I had JDM, okay. But nothing else. We discussed past medicines and why we stopped them. We discussed a lot. But, much like one doc at OKC, he wanted to know why I wasn't on methotrexate. Methotrexate is a common treatment amongst JDM patients as well. But over three-four years of me taking it, it started having no effect, was making me very sick, and was damaging my liver. But he wants me back on it and says my past results mean nothing. Just because it made me sick for years, doesn't mean it still will. We technically won't know until we try, but if the-- I don't know. I don't want to rant so much and cause more stress. But that was barely the surface of my treatment. I wasn't granted to get my port flushed again (I have had it done once in six months and recommended I do it every month; it's due), I was treated like I was dumb, knew nothing, and even though I know my own body and how it reacts (even with backup from previous records), I technically "know nothing" it seems. And even though we sent the records to the Choctaw Clinic, this specific doc said nothing was there.
Now, moving on to the thing I despise: I was refused to be taken off of Prednisone even though it is damaging my stomach, GI tract, gallbladder, etc. My pills won't work now. I was told I didn't need my IV infusions anymore, but he "wasn't sure, but knew enough [he] could tell" and that just irritated me.
Side note: every time we started weaning me off of IVs or certain meds, that's when my body reacts. Over the past three years, I have done fairly well and it's all thanks to Dr. Sestak. But now, without her, in a different place, and with all these different people trying to treat me, my mind is in so many places. I've always had negative effects to being off of Solumedrol or IVIG or even Actemra now. But with the replacement of Prednisone, we aren't sure what would happen. But with the terrible side effects of my Prednisone... what are we to do? That's up to them and their solution is to not check on my GI and to continue Prednisone since I'm well enough now.
The only changes I really got was a new blood pressure pill, I was allowed Flexeril for now, and since I'll be attending a behavioral health appointment today, I'll see if I'm allowed my other anxiety meds or what. My stress levels have been over the moon and I'm a ball of emotions, but, you know, that's fine for now.
I don't know how to organize all the facts, or what to say, but I'm truly disappointed and hope I can call and change things for the better. Never have I experienced anything good at the Choctaw Clinic unless it is the new ER center, the women's health center- nothing else goes good and it pisses me off to no end.
But, thanks to the Choctaw's... I'm pretty sure my new docs see me as the girl who refuses to take her meds (since I'm so against prednisone) and drugs herself (since I require so many meds for anxiety). They really make me feel great.
Compared to OKC, I feel dumb, insecure, and barely get to speak up at the Choctaw's with my new rheumy. And if you know me... you know I speak my mind and am loud. But when a doc comes in and treats you in such a way... what can I do when my anxiety goes up and my mind shuts off? Thankfully I've had amazing family go with me in case that happens and they always speak up if I space out. Due to my OKC rheumy vs. my Choctaw rheumy... I'm not totally sure of my treatment, but my Choctaw doc seems to think their consultation with OKC is just me going there to confirm I have JDM and he will not take their advice or anything. Brilliant, right?
So far though, I have Gabapentin at 600mg twice a day and an extra 300 mg pill at night; Lexapro, Lisinopril(?), Flexeril (muscle relaxer), protonix, sulcrafate (1 gram 4 times a day), levora (birth control that had to be adjusted thanks to my stress levels), plaquenil, prednisone (decreased thanks to my nagging). >> I was additionally on Effexor, klonopin, and another one, but I currently can't think. >> I was on three IVs.
Also, may I note that I finally got a flu shot (after years of being told I can't, which I agree with) and it made me so sick I couldn't function and wanted to go to the ER so badly. Yes, it wasn't the flu shot specifically, but since my immune system is so wonky and messed up... it activated it (which isn't always good) to make antibodies to protect me for a possible flu case in the future (that's what the shot does) and it made me sick. Even allergies have made me intensely sick. I was swollen, had a giant knot on my arm (the size of my shoulder), had chills, fever, was nauseated, and so on. But, y'know, forced to get it basically. Also go the pneumonia shot, but it wasn't a problem. Summed up update:
New doctors are rude, I got sick thanks to one of them, I was refused IV treatment I've been on for 8 years, I wasn't allowed to get off of a med that is making me sick, my GI problems are getting worse and they want to wait (yet again) to see what is wrong, even though I keep going to the ER; I still have no insurance but the Choctaws are paying for everything. I've been to two-three docs in the past two weeks and it hasn't been as well since both fought over my treatment. Is that all? I think so.
Thank you~ 안녕~
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
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