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Something Wicked This Way comes

courageWeird news everyone, in the last month I have had the pleasure of not 1 but 2 steroid packs! Until recently my medication cocktail has kept my RA/RD under control to where it wasn’t a constant issue, this may no longer be the case. My rheumatologist and I tend to use steroids rarely on me as I am overly sensitive to them and get mean, nauseous, and hungry very quickly [not fun]. The fact that she has just started throwing steroids at me concerns me, what worries me more though is that my joints are beginning to feel as though they are being ripped apart again. For those of you unfamiliar with this sensation imagine that there are weights you can’t drop that are pulling your shoulders and hips in ways they do not want to go, but all over, all the time. This could in part be due to my insanely heavy workload at school and the intense stress that comes with that. I’m meeting with my rheumatologist in a month to discuss our options. I have already missed more class than I had hope to for the entire semester, it’s not a ton but it’s more than I am comfortable with. What concerns me more is I am not controlling my pain as well as Mayo Clinic PRC taught me to. There is unfortunately a little seed in the back of my mind that toys with the idea of taking pain medication just until I graduate. Fear not, I have not forgotten how groggy and mean I was while on Tramadol and Vicodin. Nor have I forgotten the lovely sensation of withdrawal, not something I would recommend. Hopefully my rheumatologist and I will be able to alter my treatment plan and possibly switch me from my current biologic agent [Orencia IV] to another biologic. At this point in my treatment we have tried the biologics Humira, Remicade, and Orencia. Orencia has by far been the most successful in terms of effectiveness and minimal side effects. I will post an update on this issue once I have met with my rheumatologist.

REQUESTED BELSOMRA UPDATE:

I have now been on Belsomra for several months with no side effects whatsoever, we did have to increase my dose from 10mg to 15mg. All in all it has been highly useful, I continue to recommend it to people who suffer from insomnia. The only thing I have to report is YOU MUST allow yourself 7-8 hours after taking your medication before attempting to function, it makes me super groggy whenever I cut the cycle short. Other than that it’s been smooth sailing, for any further questions feel free to ask me in the comments or on the RA Supergirl facebook page.

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My Girl

not_my_circus_not_my_monkeys-474511In my literature class [which I absolutely love] we read Jamaica Kicaid’s Girl and were then instructed to write our own narrative of advice we had been given by an influential individual. One person instantly shot into my mind and I wanted to share what I came up with. We were instructed to write in the same style as is used in Girl, and include things both literally said and lessons learned, below is my version of it.

“Don’t slouch like that; stand up confidently; don’t let adults fool you or push you around; respect your teachers; got to college; do not be like the other girls; DO NOT BE LIKE THE OTHER GIRLS; do not allow for excuses; own your actions; this is how you file your paperwork; this is how you present to a superior officer; DO NOT let them belittle you because you are a woman; push through (what if I can’t); don’t let your illness own you (I won’t); always pin your hair under your garrison cap; Straighten up your ribbons; be a leader that I can be proud of; lead from the front; learn to actively follow; don’t be like the other girls; DO NOT BE LIKE THE OTHER GIRLS; don’t make the same mistake twice; be better (what if I can’t); I put you in this position for a reason; well done; I am proud of you”

I read mine aloud for the class and realized the person I wrote about really had made an impact on my life, he helped me when I first got sick, he helped pull me through all the difficult craap life threw at me in my highschool years and helped instill confidence in myself. For that I would like to thank LTC Bernard Aikens for having the patience to take an interest in the students in the Plano East Senior High JROTC battalion.

Here is the original for reference:

” Wash the white clothes on Monday and put them on the stone heap; wash the color clothes on Tuesday and put them on the clothesline to dry; don’t walk barehead in the hot sun; cook pumpkin fritters in very hot sweet oil; soak your little cloths right after you take them off; when buying cotton to make yourself a nice blouse, be sure that it doesn’t have gum on it, because that way it won’t hold up well after a wash; soak salt fish overnight before you cook it; is it true that you sing benna in Sunday school?; always eat your food in such a way that it won’t turn someone else’s stomach; on Sundays try to walk like a lady and not like the slut you are so bent on becoming; don’t sing benna in Sunday school; you mustn’t speak to wharf–rat boys, not even to give directions; don’t eat fruits on the street—flies will follow you; but I don’t sing benna on Sundays at all and never in Sunday school; this is how to sew on a button; this is how to make a button–hole for the button you have just sewed on; this is how to hem a dress when you see the hem coming down and so to prevent yourself from looking like the slut I know you are so bent on becoming; this is how you iron your father’s khaki shirt so that it doesn’t have a crease; this is how you iron your father’s khaki pants so that they don’t have a crease; this is how you grow okra—far from the house, because okra tree harbors red ants; when you are growing dasheen, make sure it gets plenty of water or else it makes your throat itch when you are eating it; this is how you sweep a corner; this is how you sweep a whole house; this is how you sweep a yard; this is how you smile to someone you don’t like too much; this is how you smile to someone you don’t like at all; this is how you smile to someone you like completely; this is how you set a table for tea; this is how you set a table for dinner; this is how you set a table for dinner with an important guest; this is how you set a table for lunch; this is how you set a table for breakfast; this is how to behave in the presence of men who don’t know you very well, and this way they won’t recognize immediately the slut I have warned you against becoming; be sure to wash every day, even if it is with your own spit; don’t squat down to play marbles—you are not a boy, you know; don’t pick people’s flowers—you might catch something; don’t throw stones at blackbirds, because it might not be a blackbird at all; this is how to make a bread pudding; this is how to make doukona; this is how to make pepper pot; this is how to make a good medicine for a cold; this is how to make a good medicine to throw away a child before it even becomes a child; this is how to catch a fish; this is how to throw back a fish you don’t like, and that way something bad won’t fall on you; this is how to bully a man; this is how a man bullies you; this is how to love a man; and if this doesn’t work there are other ways, and if they don’t work don’t feel too bad about giving up; this is how to spit up in the air if you feel like it, and this is how to move quick so that it doesn’t fall on you; this is how to make ends meet; always squeeze bread to make sure it’s fresh; but what if the baker won’t let me feel the bread?; you mean to say that after all you are really going to be the kind of woman who the baker won’t let near the bread?”

Sometimes I wish I was a lizard

julie andrews don't care

Ah, a new semester! The point at which you are absolutely positive that you can stay on top of your classes and get an A. My goal this semester [realistic or not] is to get an A and a B. I think I can make an A in English Literature due to the fact that English is kind of my jam and *gasp* I love to write! I am expecting a B in Cultural Geography, I am retaking it for a higher grade as I got a D the first time around [pre-Mayo clinic when my Fibro was unchecked and I missed three weeks of class], however the tests where surprisingly hard so I’m aiming for a B. In short I WILL BOOST MY GPA AND START SUCKING LESS AT SCHOOL/LIFE! Living. The. Dream.

The yoga adventure is to begin later today/tomorrow, I feel like I’m the only person stressed out about yoga, seems a bit counterproductive… Luckily one of my fabulous roommates has agreed to at home yoga and an awesome coworker volunteered to go to the free yoga classes offered by the university. Having people willing to help me get off my butt and make myself exercise [regardless of how  I am feeling, yes I mean it] really does help, I am actually insanely thankful for the amazing support system that the individuals close to me have formed. Even the other day my father planned a museum trip that I was excited about at a time that he knew my health was at it’s best and scheduled dinner for the time I usually need to sit. Little things like this in my Every time my health issues start to make me feel ‘small’, I remember all the little supportive things that those in my life provide and it helps me stay above water.

 

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