Chronically Something
Chronicles of Life with Multiple Sclerosis
Oh, hey, this is the cost of ONE MONTH’S WORTH of Gilenya.
THIS. have kept all my bills from each med I took.. when people ask what ‘obama care’ can do for you.. THIS. imagine your life without people. Get a diagnosis and then get on your knees and give thanks for taxes. heh. Also SHIT these meds are expensive.. and its not even a cure. heh.
My Gilenya prescription costs about $50,000 a year.
Thank gawwwwd my family has health insurance. I’m so lucky. And thank the lawd for Obamacare. Because I will not be making any money in the career I end up with.
THIS. SO MUCH THIS. Its insanity! I took a picture of my bill hah. bet my insurance company is thrilled it didn’t work out for me.. copaxone is cheaper heh.
blah..
Is anyone else on Gilenya have side effects like EXTREME fatigue? cog fog that effects vision, and random tingling in legs and arms, and back and neck pain increase? I took a day off and felt better, but today I feel the same (no…). Gonna take it now. Maybe the symptoms were psychosomatic or the combo of the flare up I’ve been having and the heat on top of everything else? just don’t know. but that one day of functioning was sorta nice. ugh. It feels like its midnight but its not even close. stupid body.
Heat, fatigue, and starting gilenya (a very brief update)
Been away.. working on getting my life in order (in the downsizing and selling things in the hopes of making some money to pay some bills). On Gilenya day 3 and so far its not so bad. During my first dose monitoring I had an abnormal EKG which had me a little worried.. but aside from added fatigue (hah like thats nothing) and some nausea its manageable.. and a pill.. so hey! woo to that. In the interim of meds I had a few flare ups, am covered in bruises from head to toe
(sorta disgust myself at the moment 
)
and had too many steroids (and in turn too many cookies hah).
anyway, the fatigue has been so much worse lately and with the heat I’m pretty much out most of the time. So… yeah. Will respond to asks asap so hang with me! hope you’re all in some sort of air conditioned location.
so I’ve been MIA because of all the tests and steroids and what not I’ve had this week.. but I had to share this. On my way out of the hospital, post- echocardiogram, I caught this squirrel having a great time with a slice of pizza in the trash can. Clearly that was some good pizza cause the squirrel didn’t even bat an eye till I got right up in that trash can to take this picture. He did end up running away.. but hell yeah he took that pizza with him. you go squirrel.
Yellow and blue make green, not “blellow.”
today I had so much trouble getting up it was scary. My meds barely helped. Didn’t want to miss the dermatology appointment (since every missed appointment pushes back my start of Gilenya and I’m getting pretty screwy on nothing and canceling so many appointments) so I went even though I was feeling worse than yesterday which was god awful. Well, the day ended after a (minor) car accident, parking in the wrong lot and having to walk a block to the right office, getting two moles removed for biopsy, driving home in rush hour traffic terrified I would kill myself on the way home because clearly I’m not ok, getting home after 6 and sitting and staring at the care sheet on how to take care of my wounds trying to actually process the info. yeah, so I don’t know if i’m supposed to do anything for that but I’m gonna roll on my side having been sitting up on the couch and go to sleep here hoping I can wake up in time to call and verify the time of my solu-medrol infusion since my phone says its at 12:00am… and I told a friend it was at 2pm during a phone conversation… so i’m guessing its not midnight and wondering if its noon not 2 and why I’m so incapable of keeping track of myself. woo. never been so excited to get a steroid infusion in my life.
So I have some funny pictures from the end of my holter monitor experience. its style inspired a necklace idea and so, as soon as it stopped recording, I may have used some mold material to cast the leads into a latex mold before I returned the whole thing with ten minutes left to get it back. thats normal right? Art is experience and all. hee. I’m crazy pants.. but damn glad that thing is off me.
Halfway through my Gilenya pre-testing. Today was more blood tests and 24 hour EKG monitor. Yeah baby! Monitor = me looking sexay in this (you don’t get to see the other cords) hawt monitor. only 15 hours and 59 seconds left! It took them 30 minutes to hook it up… seems they couldn’t find my heartbeat… I told the nurse I was Bionic or maybe I just have no heart. I’m seriously the only person that thinks I’m funny.
I see inspiration for a sculpted necklace in this bit of glory!
About Me
Thoughts, ramblings, and unsolicited advice about life with Multiple Sclerosis / Chronic Illness, by me and other people on the internet.
Because sometimes it feels good to be able to say "oh man I can relate".
My background. Brief history of how the shit hit the fan, when the shit hit the fan. Written then from that POV. Lets call this link some context to this blog
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