Hi all,
I was diagnosed this past May, but probably should have been in 2007 when I had symptoms but no health insurance and opted out of MRIs (good stuff, right?). Context: 29, perma-grad student, hopefully employed in the future. Pretty optimistic about disease, because I've had a few months to overindulge my misery and decide that this could be way, way worse. i.e. I could not be an extraordinarily privileged, overeducated person with gratuitous access to an excellent (uh) healthcare system and a charming family equipped with nurses.
Been taking copaxone for a month, and the last flare up has mostly gone away so I can use my hands and face again-yay!
While I am all kinds of unhappy with the diagnosis, here are some things I think are worth sharing/hearing responses to. Discussing them cheers me up, but my friends are starting to roll their eyes, and the nurse that works with my neuro is going to smack me upside the head soon if I keep rambling to her (and she is a sweetheart, I don't want to deserve that).
1. I am kind of covered in tattoos. And kind of skinny. This means I have like 3 places I can do an injection without it hurting like hell as I stab some kind of muscle-even at 45 deg angle. I've gotten 4 different answers from shared solutions about how close I can get to a tattoo safely. I want Teva to pay me to inject square in the middle of one and see what happens. Think they'll bite? Since they probably won't, anyone with tattoos on copaxone want to weigh in? I've been inching closer and closer to the ones on my hips and arms (like, 1/2 an inch) and so far nothing catastrophic has happened.
2. Considering how much the copaxone stings if I screw up and any gets on the outside of my skin, I think I have no future need for pepper spray, as I can probably weaponize the stuff and am always carrying it around since I am never home in time to inject myself. This is likely illegal, and that stuff is expensive and not something I'd waste....so. I AM JOKING about this.
3. The autoject thing is so much more scary than a tiny needle. I have two: shared solutions keep sending it to me even though I've been injecting manually without hysterics for a month. Something that big and loud should at least have a funny shape. I have suggestions-anyone else?
4. For me, prednisone side effects were worse than MS symptoms. Anyone else? I mean, I'll sacrifice some fine motor in my right hand for a month if it means not feeling like I am ready and willing to kill people. I like to remain nice, and avoiding the steroids is probably a good way to avoid incarceration. That stuff made me insane.
5. Despite being within normal BMI ranges (a little on the hefty side, honestly) I've had five or six people tell me to gain weight to make the injection easier, and stop working out so much so as to leave a little fat. Compare to a month prior to need to conveniently inject, when all healthcare professionals told me to get off my *** and exercise.
6. Diet ideas anyone? I've kicked some bad habits (caffeine...was giving me heart palpitations) but cigarettes are hard. Trying to find other ways to be grotesquely healthy (aside from MS) to mitigate the self-inflicted damage.
7. On a really serious note: I've always intended to adopt/raise a child, alone. I'm really not interested in romantic partners, and having witnessed the family law system, no interest in child-rearing legal sharing. That seems like a stupid idea, now that there is potential for increased disability and no way to know when/how/how much. Am I being dramatic in assuming that now I can never have kids? I mean, is it even responsible for me to raise a puppy if I live alone?
Thanks for the space to rant; my family, friends, and therapist are by now probably a little sick of me.
I was diagnosed this past May, but probably should have been in 2007 when I had symptoms but no health insurance and opted out of MRIs (good stuff, right?). Context: 29, perma-grad student, hopefully employed in the future. Pretty optimistic about disease, because I've had a few months to overindulge my misery and decide that this could be way, way worse. i.e. I could not be an extraordinarily privileged, overeducated person with gratuitous access to an excellent (uh) healthcare system and a charming family equipped with nurses.
Been taking copaxone for a month, and the last flare up has mostly gone away so I can use my hands and face again-yay!
While I am all kinds of unhappy with the diagnosis, here are some things I think are worth sharing/hearing responses to. Discussing them cheers me up, but my friends are starting to roll their eyes, and the nurse that works with my neuro is going to smack me upside the head soon if I keep rambling to her (and she is a sweetheart, I don't want to deserve that).
1. I am kind of covered in tattoos. And kind of skinny. This means I have like 3 places I can do an injection without it hurting like hell as I stab some kind of muscle-even at 45 deg angle. I've gotten 4 different answers from shared solutions about how close I can get to a tattoo safely. I want Teva to pay me to inject square in the middle of one and see what happens. Think they'll bite? Since they probably won't, anyone with tattoos on copaxone want to weigh in? I've been inching closer and closer to the ones on my hips and arms (like, 1/2 an inch) and so far nothing catastrophic has happened.
2. Considering how much the copaxone stings if I screw up and any gets on the outside of my skin, I think I have no future need for pepper spray, as I can probably weaponize the stuff and am always carrying it around since I am never home in time to inject myself. This is likely illegal, and that stuff is expensive and not something I'd waste....so. I AM JOKING about this.
3. The autoject thing is so much more scary than a tiny needle. I have two: shared solutions keep sending it to me even though I've been injecting manually without hysterics for a month. Something that big and loud should at least have a funny shape. I have suggestions-anyone else?
4. For me, prednisone side effects were worse than MS symptoms. Anyone else? I mean, I'll sacrifice some fine motor in my right hand for a month if it means not feeling like I am ready and willing to kill people. I like to remain nice, and avoiding the steroids is probably a good way to avoid incarceration. That stuff made me insane.
5. Despite being within normal BMI ranges (a little on the hefty side, honestly) I've had five or six people tell me to gain weight to make the injection easier, and stop working out so much so as to leave a little fat. Compare to a month prior to need to conveniently inject, when all healthcare professionals told me to get off my *** and exercise.
6. Diet ideas anyone? I've kicked some bad habits (caffeine...was giving me heart palpitations) but cigarettes are hard. Trying to find other ways to be grotesquely healthy (aside from MS) to mitigate the self-inflicted damage.
7. On a really serious note: I've always intended to adopt/raise a child, alone. I'm really not interested in romantic partners, and having witnessed the family law system, no interest in child-rearing legal sharing. That seems like a stupid idea, now that there is potential for increased disability and no way to know when/how/how much. Am I being dramatic in assuming that now I can never have kids? I mean, is it even responsible for me to raise a puppy if I live alone?
Thanks for the space to rant; my family, friends, and therapist are by now probably a little sick of me.
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