Follow by Email

Tuesday, July 16, 2013

running with the bulls

sometimes i think this disease just gets harder and harder to deal with.

the funny thing? i knew it would be. "it gets worse before it gets better". that's what everyone's been saying. the doctors, the people in my support group... i kinda knew what i was in for. but COME ON! this is freaking RIDICULOUS!!! ESPECIALLY that i'm not on the path to redemption. i'm not on the healing path, i'm on the path to another surgery. i'm on the path to hey, we THOUGHT we fixed you, but we didn't so... let's try something else. let's give you some medication to tide you over until we can pop out your adrenal glands, too. great. oh, and you know what's fun about that? i could die. yep. if cushing's didn't kill me, i could die from having my adrenal glands removed. how lovely. it's called an adrenal crisis. your body NEEDS them to survive. and i won't have them, so i'm going to be relying on drugs to get me through. great. more medication. part of me doesn't want to have the surgery and just say fuck it and continue to feel like shit the rest of my life. let the disease win and destroy me even more. let me waste away to nothing. i don't want to risk death. i've cheated death 4 times already, why take more chances? the old nicole was a risk taker. the old nicole would've laughed in its face and said bring it on. this nicole? is a chicken. this nicole kinda likes living. well, most days anyway. this nicole is scared to death of the thought of an adrenal crisis. but, when i posted about it in my support group, i did hear good things from people who have had their pituitary removed as well as their adrenal glands and they are doing just fine and haven't had an adrenal crisis... so that gives me hope. i've also read stories about people who've had an adrenal crisis and when it's treated properly, they're fine. i may just be overreacting, but this is my body we're talking about, this is my life. and if you've been paying attention to me at all, you've seen that it's been completely fucked up by doctors in the past 3 years and this disease has destroyed me. so i'm allowed to be skeptical

and i'm sick of people telling me how to feel or what to think or how to act. shut up. are you walking my path? has this happened to you? you don't know what's best for me. you don't know what it's like. you may think you're helping me, but really, you're just pissing me off. and people wonder why people with a chronic illness have a negative attitude, it's hard to stay positive when you have people down your throat telling you how to live when they have no idea what it is you're going through. you may think you have an idea, because i tell you a little bit, but until you're living MY life... you have no idea.

i went away this weekend. it was wifey weekend. i went to jersey friday night. it was rough. my cousin came over in the morning, and at first i told her not to come because i felt like such garbage. but then after moving around a bit and taking some medication, yay for drugs, i started to feel better and let her come over. we had a nice time conversing. but then she left and i had to take a shower. some days, i dread the shower. showering HURTS. it takes so much out of me. and friday, was one of those days. my hair hurt. but i had to do it. had to get clean. had to push myself so i could go to jersey friday and enjoy, or at least try, to enjoy myself. i hate that i have to do that. TRY. why can't i just DO it. why is it so difficult for me? oh right... i remember now. because i'm not normal anymore. well, i was never "normal" but now i'm a cushie. yep. that's part of what defines me. not my eyes, not my smile, but my cushings. anyway, i managed to shower and get all prettied up for my trip. and i got there and it was lovely. for some reason, being around the two of them just lights up my life. there was no try. there was no sickness. it was like... cushing's didn't exist. i forgot i was sick. i mean, they walk a little slower with me, and a little ahead if they're on my right side so i can see them... but i get to forget for a while. and it's magical.
they took me to medieval times. i love that place. it's so much fun! i love the show, the joust, the knights, the horses, the sword fights... and the food is great. i had to box mine up because they give you so much (one of the benefits of cushings is that you have no appetite. you're just a fat anorexic). the drinks were good, too. i didn't drink, drink. everything i had was non-alcoholic. love me some pina coladas! our knight won, which was a bonus. and petey bought me a faerie to add to my collection. i didn't expect that at all. it really touched my heart and i cried a little bit. she's beautiful and she's sitting above my bed, watching over my room. i named her aurora. i just looked up what it means and it was the name of the Roman Goddess of the morning. maybe she'll help me become a morning person. so now i have an aurora, a bella, a persiphone and a cornelia. so if you're struggling with what to get me for my birthday in october, a faerie is a good idea. but make sure she speaks to you, don't just get me any old faerie. she really has to be a GOOD faerie, one that makes you think of me. like aurora, i fell in love with her. bella, she's me. cornelia, she's a mix of me and my grandmother. persiphone, was a gift and raven said that as soon as she saw her she knew that she belonged to me. wow, talk about getting off track. so friday night was a good night. and i have my own room there, well, i share it with the cat, which is fine as long as i take some benadryl...
saturday we started early. we ran some errands, went shopping, and then wifey treated us to mani/pedis and mini chair massages. they were much needed and much appreciated. after our nails we went home and petey was waiting for us. we were going to see an early movie, but we took too long so we ended up going to mr.sushi- omg BEST SUSHI EVERRRR and then petey took us to see despicable me 2. i think i laughed louder than anyone in the theatre. we got home a little before midnight. i did pretty good.  i didn't nap at all, which is unlike me. i usually take a 2-3 hour nap during the day. i did start to nod off but, we got some wake-up wraps at dunkin and i had some decaf coffee and that seemed to help. so i survived saturday.
sunday is a whole other story... i crashed and burned. horribly. there was a pancake breakfast that her emt squad was putting on, but i couldn't go. my cortisol was so all over the place that i had a hard time sleeping saturday night and there was no way i would be able to function in the morning. so i stayed home and rested. we went out to breakfast which was delish because i got the same thing i always get when i'm down there- taylor ham, egg white and cheese sammich, mm mm mm! then we went to petsmart to look at puppies and then it was home. we were gonna work outside on the house but i kept falling asleep in the car so i said i needed to take a 20 minute nap. and then it was 4 hours later. smh. 4 freakin hours. i felt bad because i wanted to help, but they were so understanding. i woke up to find wifey standing over me, making sure i was ok. so i woke up, kinda of out of it, lacking energy, not really ready to move. or really able to. but i did. we were having dinner at her parents house for her sisters birthday. so we got there and i ended up almost falling asleep on their couch. there was no way i was driving home that night. her mom's not in good shape either. the two of us were quite the pair that night. dinner was delish. her dad is quite the chef. i love being there. my other family. they're so wonderful. i hate that i was crashing so bad, though. but they were really understanding. we all watched a movie together after dinner, i don't know how i managed to stay awake for it, but i did. we went home and i couldn't even stay awake for anything. i just brushed my teeth and said goodnight.
then morning came. i got ready to go and wifey and i said our goodbyes. big mistake. i should've stayed at her house and slept until she got home from work and left then. driving home was dangerous. i kept nodding off. i was swerving. i was scared. the fatigue took over. cushings took over. and it was not good. thank god there was a rest area that i could pull into. i slept for about 20 minutes and then i started freaking out that someone was going to smash my car and steal me. yay for anxiety. i made it home in one piece. my parents had offered to come get me sunday, but i didn't want to miss birthday dinner and i thought i'd be fine to drive on monday. when i told wifey what had happened monday, she was not happy. so we're gonna figure something out for next time. i think i'm just going to end up sleeping all day and then driving home in the afternoon because that would be safest.
i don't want to say i overdid it, because it felt so good to be normal. to feel normal. to not feel sick for that day and a half. and then sunday i was reminded, oh hey nicci. don't forget, you have a chronic illness. you're not allowed to have fun. you have to be bedridden for a while now. you're an idiot if you thought cushings was going away.
so it's tuesday and i had physical therapy and that nearly killed me. i'm so sick of feeling like this. i'm just ready to get better. i'd like it to be my turn. i'd like to be able to work. to be able to run around in the sun. to chase my friends kids. to do yardwork. yes, i said it. to go swimming. to take off and go to the shore with my friends and not have to think twice about it. to be able to say, yes, i will be at your brothers memorial service, not, it all depends on how i'm feeling because i can't guarantee that it'll be safe for me to drive there. like seriously. i want to go back to being a good friend.
speaking of being a good friend, i ripped photos off my wall today. that was refreshing. i figure, if i haven't seen or spoken to you in over a year, or you've been a douche to me, you're picture's coming down. so that was kind of a good feeling. i was rather productive today.
i ran with the bulls this weekend. i kept up. or i tried to. but i survived. barely. i'm learning my limits. i've always kinda known my limits, i just feel bad letting people down. that's why i don't like to go anywhere because i don't want to hold people back. but, they got a firsthand glimpse into my life and what i go through when i do too much so... idk. i feel bad but, i'm just glad i got home ok.
i did have a good weekend. the only thing i'd change, would be me. i would've rather been someone else. i would've liked to have been a healthier version of myself. maybe a version that they would've liked better but, they seem to enjoy this version. i don't think they'd trade me for the world. and that means everything. sick or not, they love nicci 2.0

1 comment: