healing.
- My biopsy went well-my nephrologist says I’m the poster child for kidney biopsies. I’m thinking of updating my resume to include “responds well to 18 gage needles in back,” “has a pleasant attitude when poked and prodded for blood work every few hours,” and “honestly enjoys hospital food.”
- The kidney damage was at stage three, which means it is reversible and I should fully recover with the aid of some strong long-term meds. My blood work has already improved significantly, and it’s only been a few weeks. I’ll be on fewer steroids, though. I’ll miss the euphoria but not the desire to eat everything in sight.
- My hair is growing back! My comb-over days will soon be over and you all can tell me how cute I look.
- BIGGEST RELIEF: I don’t have to do chemotherapy.
thanks, everyone!
cinnamonbunza replied to your post: are you there tumblr? it’s me, allie.
YOU LOVE PICTURES OF YOUR FEEET
you know it!
glossylalia replied to your post: are you there tumblr? it’s me, allie.
YOU’RE A WEREWOLF! (but now you have a plan of attack and that is awesome!)
i made a wolf playlist! i’ll post it later. and this is the cover of my lupus folder:
but maybe i should photoshop my face onto it:
my sense of humor is inflamed, just like my organs! i read gilda radner’s autobiography, it’s always something, and i guess that by reading a book by a funny lady, i realized i could be a funny lady. sometimes…it’s mostly puns.
byallflowers replied to your post: are you there tumblr? it’s me, allie.
I’m happy you know what it is. I hope you continue to get better and learn how to deal with your illness. wanna hang out?? I’m always up for a hang session and some music and some food.
YES, I WOULD LOVE TO SEE YOU! i’ll be out of commission next week, but i’ll be in chapel hill on the 26th to see neil degrasse tyson. there’s music on the porch at the center for the american south before his talk starts, and we could grab dinner after! if not, FKON on may 4th?
iamamused replied to your post: are you there tumblr? it’s me, allie.
i like seeing you on tumblr. sending good vibes. give the cute baby goats hugs for me too.
thanks! the goats will get many, many hugs.
gatm replied to your post: are you there tumblr? it’s me, allie.
We can stagnate like a couple of mosquito larva together!
nope! i’m done stagnating. i’m healing and then living the life i want. no more mediocrity.
are you there tumblr? it’s me, allie.
i miss blogging. i should be back to tumblr periodically, but i don’t like how i get all mopey and depressed when i’m here often…a downside of the internet, i suppose.
important updates:
- I FINALLY SAW A RHEUMATOLOGIST. she is nice and helpful and asks lots of questions. survey says: lupus!
- i’ve lost 25 pounds and half of my hair. i look like a skinny cryptkeeper. my fatigue is gone because of magical steroids. there is no roid rage, only euphoria. i’m getting lots done, which is nice.
- i had really bad chest pains a week or so ago, and after a $600 CT, i don’t have cardiomyopathy (a huge relief-i have a family history of it), but i did have a bit of fluid around my heart that has since gone away.
- i got more labs back, and overall they were okay. my kidneys might not be functioning as well as they should, so i’m going to the hospital next week for a biopsy. i’m excited about hospital food, not so excited about a needle in my back. good vibes are appreciated. if it shows that the lupus is causing kidney problems, my doctor will put me on more aggressive treatment (either a chemo drug or another newer medicine that has really good results.)
i’ve been feeling okay enough to do things like:
help out on a goat farm. this is my favorite goat, flannery. obvious association: flannery o’connor is one of my favorite authors and she had lupus. i go once a week and help bottle feed about a hundred lil babies. i love being out in rougemont, without cell service and surrounded by cuddly animals and greenery everywhere.
drinking wine with glossy and co.
eating really good food (nanataco, buns, every food truck in existance)
and playing with dinosaurs
i’ve felt isolated because i don’t like feeling pitied for my problems. i’ve internalized my anxiety and depression for years and put on a decent facade of independence and strength (and yes, some of that is real indepenence and strength) because i don’t want to be seen as weak. ever. i’ve cried in front of doctors and curled up in my parents bed more than i’d like to admit this year. it seems like lupus could be the Big Challenge of my life, which is scary and also kind of lackluster. a disease with little rhyme or reason. it sucks sometimes, and it’s lonely. i don’t want to be that person who fades into the background. i’m also not going to become a beacon of wisdom and grace. i’m just trying to get better. and i think overall that i am. i’m trying to slow down, which is the hardest. it’s like i’m waiting for my life to begin and i can’t wait. what is time, anyway? i see a lot of my colleagues and friends hitting their stride in their careers and personal lives and here i am, very nearly stagnant. but i’m trying. i have to change my entire lifestyle and more importantly, my mind. optimism, what is that?
there’s always that shred of doubt that things will get worse, and i won’t get better. which could be part of the reason i’m not getting better. a vicious cycle! i’m doing a lot of reading about stress and the ways in which it manifests itself in the body. it’s a whole new world for me to discover.
no reblogs, please. comments are appreciated!
blog break.
i am in need of a major overhaul on my life, particularly my health, so i’m going to take a break from posting (and reading about things that really stress me out).
not completely off the grid: alliemullin at gmail.com
huh.
You are seeking an affectionate relationship, offering fulfilment and happiness. You are capable of powerful emotional enthusiasm. Deep down, you are a kind loving person, always helpful and willing to adapt yourself if necessary to realise the bond of affection that you desire. But you need the same consideration and understanding from others and it is this need that will sometimes hold you back… so let go, trust and you may pleasantly surprised at what happens.
You are working extremely hard trying to improve your image. You need for those people in positions that matter to recognise your potential and to acknowledge you.
You are feeling under considerable pressure and you are being forced to make concessions. You are not particularly happy with this state of affairs but you feel that you have no alternative. If you were to force issues you would be left out or completely ignored by one and all.
The tension that you are experiencing at this time is perhaps due to physical and/or mental frustration. It would appear that you are not appreciated and as a consequence, the situation is most disagreeable. You seek personal recognition and the appreciation of others to compensate for the lack of like minded people with whom to ally yourself. You would like to surrender and merge with others but your inherent self-restraint makes it difficult for you to open up. This disturbs you as you regard such instincts as weaknesses to be overcome. You want to be liked, admired and appreciated for yourself.
You would like to be respected and valued for yourself and this can only be achieved from within a close and harmonious relationship.
“The tension that you are experiencing at this time is perhaps due to physical and/or mental frustration.”
i am literally red all over right now. frustration, indeed.
double pineapple pizza + cheesy bread. extra sauce. COMFORT.
talked with rebecca, whose mom has lupus and i’m going to chat with her tomorrow. got phone calls from jessie, niraj, and nureena. feeling supported (and really, really itchy).
i can’t win.
back from the hospital. benadryl and steroids. three failed IV attempts. no referral to a rheumatologist. a lot of ‘we’re so sorry’ and ‘that sucks’ and ‘i wish there was something we could do.’
so in short, i wasted $100 and spent four hours at the er only to be sent away.
thanks, universe! i really love what you’re doing.
my immune system is so great it’s kicking its own butt right now. no fun. also, i’m having an allergic reaction, and aside from being red and puffy all over, i want to claw my skin off.
going to the hospital tomorrow for some answers. wish me luck.
