pretty sick

its hard to be pretty on the outside and sick on the inside thats what im writting about today , the inner pain of being what i call pretty sick  the absolute worst thing to say to someone whos chronically ill, is "you dont look sick, your so pretty?" i get this all the time and i just want to scream , "please tell me, enlighten me, how should a sick person look ?>?"

I am pretty sick. This means i am a pretty young girl with many chronic illnesses. its not that im not gratefull to be pretty.... i am, but being a pretty girl on the outside and suffering from the battle of chronic illness on the inside has its challanges.  Its not thaat im a vain person i mean ive never really thought of myself as being a person with a huge ego or someone whos narsissitic but i know i am pretty just an average kind of pretty, ya know not a supermodel or anything but appealing on the outside.  i have gotten many insulting and upsetting things said to me by nurses, drs, friends and family and even strangers, everyone is full of judgement in this society.  recently a nurse walked by my room at the hospital glanced at my chart and saw my huge list of medications, she glanced into my room and gasped awaking me and i said is everything ok? and she said oh yeah sorry to disturb you i think your chart got mixed up? are you on all these medicines??  i said yes why? she showed me the chart and i said yes this is me?? and she said oh im sorry you caught me by surprize i just thought you would be an old lady on all these meds and having all thse health issues i wasnt expecting a pretty girl? i calmly said "well disease can affect people of all ages sizes and outter appearance disease is one of the few things that doesnt discriminate, " and inside i was crying crying out to the world for making me like this crying out to the universe spilling tears within my soul because of how unfair the world is and how unfair it is to give a pretty girl such pain, nobody deserves this kind of pain.  I have a hard time dealing with having arthritis and being me, personally i dont think i look right with a gangster limp, if i was a lil bit taller or had a lil bit less of a pretty face i might pull it off without anyone noticing and i see how differant people look at me when they see me get up and limp away, it breaks my heart people never used to look at me like that? i know they are thinking "why is that girl limping, its too bad she so pretty" and it disgusts me . the limp disgusts me when i swell up in the joints and see how unly and huge my normall daity hands ect are, and i guess its hard to be pretty sick. its hardbecause people dont expect you to limp and because you dont limp all the time, its hard for people to understand and its hard for me to understand.

what really tears me up is my high heel addiction all these gorjus high heels ive collected, i cant wear any of them anymore. I used to love wearing high heels, i have dozens of stunning high heel stellettos and a short girl has got to wear stellettos but not me, not anymore. I still buy the high heels stack them up at my doorway hoping for the day i can wear them again, hoping for the day this diseased body has set me free. then theres the swelling in my abdomen often mistaKEN FOR ME BEIN FAT, BUT IM NOT FAT IM RETAINING WATER FROM STEROIDS AND my abdomen is swollen and bloated im not fat but you cant explain that to your clothes. my young stylish wardrobe has been changed to compy pjs mpst of the time. i can t wear most things much any longer because the tight clothes bother the tummy pains and show the inflammation and bloating too much so i have all these clothes that i can t wear that i long for the day i can wear again.

Theres so many aspects of living with chronic illness that impacts your body image and makes a once confident beauitfull woman self concious, afraid to go into public and let them notice her limp before her pretty face.  I cant go to the grocery store with my lova and ride one of those ya know , what are they called? the lil scoooters? i refuse to use one, my friend karen thinks im silly for it, i refuse to go out and let people gawk at the pretty girl in the scooter unable to walk without extreme pain.  I know that the customers will wander why im so lazy and dont use my legs because they are too ignorant to see that i have arthritis and all my joints have swelled and im unable to function like them, but thats our society thats the society you created and i choose to live outside of this outside of the gleering public eye.  This hope that i have that discussing serious issues that confront people with chronic illness in this blog is that one day people as a whole will change the way they think and judge each other without caring to know the depths of their soul.  i have been blessed to know both sides of the card, i see the differant ways soceity perceives me and others like me. when im feeling good and i dont have any rashes covered in caked cremes  and self tanner when i dont have my hated gangster limp, when my eyes shine and my hair is done i see how they look at me then i compare it to how they see me when my diseases are in full flares and its a world of differace, and it shoudlnt be.  I am beautifull all the time and thats because my soul is deep and my heart is big and my mind is open and i hope that this helps all of you remmeber how beautifull you all are no matter how pretty sick we are inside. no matter how soceity veiws us we can change their perception if we speak out and quit hiding in the safety of shadows when the sickness strikes. i have so much love for all of you out there fighting invisible or visible chronic illnesses and vow to always be the voice of the unspoken. love always fighting with you all chrystal

great now i have another painfull disease im thrilled, not

so guys on monday they diagnosed me with fibromyalgia at the cleveland clinic, yeah just what i need another painfull chronic illness, so im pretty much posuitive if there is a god he definatly hates me. so heres the scoop on my failing human body,
http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=tests-and-diagnosis

so hey guys, so went to the cleveland clinic on monday, they say i have fibromyalgia ?who else has it? what feedback, advice and info can you say abotu thsi disease and how to manage it? the rhematoligist in cleveland said that its veyr unusual for crohns arthritis to still swell and be active,when the crohns is in remmission, (lucky me im always the exception) so she said its must be ra even if i dotn have the rh factor or whaever its called, its the genetic marker in yoru blood they test for ra,i dont have it but still apparently have ra, lucky me , not, so shes going to move my remicaide up to 5 weeks and writ ea letter to my gi saying to do a higher dose sinc eyou can legally only have one dr perscribe remicaide and she sai dif he doesn t want to deal with perscribing my med then he s...

houdl transfer the scriopt over to her , whatever so then she says she doesnt knwo why hes perscribing me salumedryl when your not suppose dto perscribe it to someone who has osteopenia?? due to the increased risk for osteoporosis, i told he rcuz he said its supposed to prevent an allergic reactiona dn prevent me from developing antibiodies, and she said that theory was debunked or whatever 10 yrs ago so the fuckers behind in his perscribing info by ten yrs! and iv ebeen takign salumedryl for no reason for ove r ayr! she said she wants me off the salumedryl immediatly and to see a fibromyalgia specialist and
go on cymbalta
 so due to all the paperwork ect i still cant get my remicaid etill mnday so i cant walk and can barely use the damn crutches cuz my elbows are swollen so uim pretty much craw;ling aorudn the hosue today, my elbow is huge, my knee is im talking the size of a damn slightly deflated basketball, my ankles swolen to the size of a damn softball and like eveyr bone in my foot looks hugely swollen and m,y back is hurting liek a mfer and im moody and really need some encouragement cuz ive bout ha dit with these damn drs and all thsi damn pain i dont knwo what i did in a past life to deserve this much pain guys . i really dont i must have beenn a shitty person in my past life to have karma deliver me this much pain, cuz im a good person in this life and have alreayd had a pretty shitty life up to now so id think id be ready for a fuckign breack from suffeirng for a while but apparently god fuckin hates me cuz now that my crohsn is gone i stillg ott abe in painf rom thes eothe rtwo damn diseases and iv eha dit sorry thats alot of ranting guys hugs to you all and tyhankx for being there for me to vent too cuz im in a reallyl pissy moood todaY AND IN ALOT OF PAIN