A change is coming ...
A change is coming in my life ... it might seem small to some but it has turned out to be sorta monumental to me ...
(I've added links in case anybody want to see what I am actually talking about... I know this is not normal life for everybody...)
I am starting serious treatment for my JIRA - juvenile idiopathic rheumatoid arthritis - or just well ... arthritis ... and when I say serious I do mean real serious. I have been prescribed Arava, a so-called DMARD (disease modifying drug), which should bring my arthritis back down to normal more manageable levels and keep all the flares at bay (and god knows I fucking hate flares! they got the worst timing in the world!). Bad thing about this otherwise wonder drug - one it's crazy expensive and two I'm gonna get so sick from it ... I really do hope it'll be less than I usually get from my normal arthritis medication but I am still feeling a bit super anxious about starting it.
Some of this anxiety comes from my previous experiences with DMARD drugs - such as Methothrexate (MTX), which some might know if they have had cancer or had somebody in their family with cancer, it was a vicious and disgusting drug to take to be honest! I am a person that easily has allergic reactions/side effects from drugs and anything else - so of course I also had it with the methotrexate (MTX) I was lucky enough to both have no appetite, hairloss, nausea and just a general lowered quality of life. The nausea disappeared luckily when I started the injections but then I had to use a disposable syringe once a week to actually inject myself and also completely prepare the syringe for the injections (not fun times) and there was of course the injecting also - so if anybody want tips on how to - trust me I got them. Another wonderful little drug I have had the chance of trying to be treated with for my arthritis is Salazopyrine - sulfasalazine - I got rashes it was bad - my doctors all got a big red NO next to it in my charts. funtimies. Also one last gem - I have only once been put on pain management - once - they tried to get me to swallow an unholy amount of paracetamol (more preicsely Pinex - normally totally harmless over the counter for headaches and minor pain management) daily to manage my pain ... what did my body do. Well of course it decided to have a violent reaction to all those Pinex and I started having headaches ranging from moderate to migraine like whenever I took the pills.
But back to my current medication of choice (or more precisely - random rheumatologist lady I have never seen before's choice) and the whole ... um ... but why so anxious this time - sure you've been less than lucky in the side effects department but really this could be better, right? and you could be lucky it would actually work this drug (none of the previous drugs - except one I will get to - have actually slowed down the deterioration of my joints and general health) but some of the reasons I have extra anxiety with starting this is - the rheumatologist I saw was pretty uncertain about giving me this and she really wanted to just try Methotrexate again, or maybe not give me anything at all - which I was not too happy about I spent a month building myself up to get new medication. She also considered Salazopyrine - until she saw the pretty little note in my file or just got smart - and then went back to Methotrexate a few times with me saying no each time - I do not want to back on it and practically have all the joy of life sucked out of me - again! Luckily, she finally got smart and suggested maybe I should try one of the alternatives to Methotrexate, even if she didn't really have much experience with it. So that's sorta where the getting my new meds (Arava) ends ... So why am I anxious about it - besides all the things in my past with medication - well you see I am also taking Plaquenil, which is actually anti-malaria drug, which have been very very succesful in giving me most of my life back because before I started it I was always tired and never had any energy. In high school and my freshman year of Uni I was able to stay awake and lucid for maybe 3-4 hours before having to sleep 2 hours to be able to get something productive done again. This as you can guess is a hard limit as to what you can do then and it also gives you a sense of not being to keep up with the world and your peers because you're constantly sleeping or awake but not really there. So why is it so important I am taking Plaquenil? When you get Arava or just look it up online it says it should not be taken with (hydroxy)/chloroquine compounds ... and Plaquenil happens to be one of those, so here's to my liver and it's battered and tattered state. I do not want to give up Plaquenil with the succes it's had - even with the light sensitivity side effects and I'm genuinely afraid they might try to make me do that and then what would happen if I stopped taking it. So yeah that's a quick summary of ... well... I don't know what to call it exactly but ... yeah.
on a lighter note - I will have to like declare my undying for all the sweet nerdtastic Magic: The Gathering players out there... you don't know you are even being mentioned here ... You are all awesome and I love following you all!
and I will be back soon ... with happier content ... this post has been haunting my laptop for a few weeks now...
(I've added links in case anybody want to see what I am actually talking about... I know this is not normal life for everybody...)
I am starting serious treatment for my JIRA - juvenile idiopathic rheumatoid arthritis - or just well ... arthritis ... and when I say serious I do mean real serious. I have been prescribed Arava, a so-called DMARD (disease modifying drug), which should bring my arthritis back down to normal more manageable levels and keep all the flares at bay (and god knows I fucking hate flares! they got the worst timing in the world!). Bad thing about this otherwise wonder drug - one it's crazy expensive and two I'm gonna get so sick from it ... I really do hope it'll be less than I usually get from my normal arthritis medication but I am still feeling a bit super anxious about starting it.
Some of this anxiety comes from my previous experiences with DMARD drugs - such as Methothrexate (MTX), which some might know if they have had cancer or had somebody in their family with cancer, it was a vicious and disgusting drug to take to be honest! I am a person that easily has allergic reactions/side effects from drugs and anything else - so of course I also had it with the methotrexate (MTX) I was lucky enough to both have no appetite, hairloss, nausea and just a general lowered quality of life. The nausea disappeared luckily when I started the injections but then I had to use a disposable syringe once a week to actually inject myself and also completely prepare the syringe for the injections (not fun times) and there was of course the injecting also - so if anybody want tips on how to - trust me I got them. Another wonderful little drug I have had the chance of trying to be treated with for my arthritis is Salazopyrine - sulfasalazine - I got rashes it was bad - my doctors all got a big red NO next to it in my charts. funtimies. Also one last gem - I have only once been put on pain management - once - they tried to get me to swallow an unholy amount of paracetamol (more preicsely Pinex - normally totally harmless over the counter for headaches and minor pain management) daily to manage my pain ... what did my body do. Well of course it decided to have a violent reaction to all those Pinex and I started having headaches ranging from moderate to migraine like whenever I took the pills.
But back to my current medication of choice (or more precisely - random rheumatologist lady I have never seen before's choice) and the whole ... um ... but why so anxious this time - sure you've been less than lucky in the side effects department but really this could be better, right? and you could be lucky it would actually work this drug (none of the previous drugs - except one I will get to - have actually slowed down the deterioration of my joints and general health) but some of the reasons I have extra anxiety with starting this is - the rheumatologist I saw was pretty uncertain about giving me this and she really wanted to just try Methotrexate again, or maybe not give me anything at all - which I was not too happy about I spent a month building myself up to get new medication. She also considered Salazopyrine - until she saw the pretty little note in my file or just got smart - and then went back to Methotrexate a few times with me saying no each time - I do not want to back on it and practically have all the joy of life sucked out of me - again! Luckily, she finally got smart and suggested maybe I should try one of the alternatives to Methotrexate, even if she didn't really have much experience with it. So that's sorta where the getting my new meds (Arava) ends ... So why am I anxious about it - besides all the things in my past with medication - well you see I am also taking Plaquenil, which is actually anti-malaria drug, which have been very very succesful in giving me most of my life back because before I started it I was always tired and never had any energy. In high school and my freshman year of Uni I was able to stay awake and lucid for maybe 3-4 hours before having to sleep 2 hours to be able to get something productive done again. This as you can guess is a hard limit as to what you can do then and it also gives you a sense of not being to keep up with the world and your peers because you're constantly sleeping or awake but not really there. So why is it so important I am taking Plaquenil? When you get Arava or just look it up online it says it should not be taken with (hydroxy)/chloroquine compounds ... and Plaquenil happens to be one of those, so here's to my liver and it's battered and tattered state. I do not want to give up Plaquenil with the succes it's had - even with the light sensitivity side effects and I'm genuinely afraid they might try to make me do that and then what would happen if I stopped taking it. So yeah that's a quick summary of ... well... I don't know what to call it exactly but ... yeah.
on a lighter note - I will have to like declare my undying for all the sweet nerdtastic Magic: The Gathering players out there... you don't know you are even being mentioned here ... You are all awesome and I love following you all!
and I will be back soon ... with happier content ... this post has been haunting my laptop for a few weeks now...