so as alot of you may know i struggle with issues of negitivty i have a hard time being positive i almost always think of the negitive first........i have met alot of ppl who are so positive thru support groups and strive to have this kind of positivty and i just cant seem to do it.....mayeb beaucse life seems to keep giving me the worst i just expect it but why ?? i mean theres ppl with way worst lives and wayyy worst issues going on and they seem to be able to hold more composure and a better attitude abotu it.......
?? i know there are alot of ppl whos crohns or uc or other situations have given them even more to deal with than me and their diseases are much much worse off currently but i still feel sorry for myself and get deppressed and angry,.,.,.,.,.,.,.,.,.,.,.,.and i notice my negitive bad attitude about my diseases i let it push me down into a hole and i dont do as much as ppl with even more issues and i just beat myself up inside my brain....
i will always knwo its just partt of me my mood swings my deppression my cursed by the world tragic whoa is me attidute i try to supress it but i guess i must just have to learn to live with these emotions and one day maybe i will surpass it .............and wake up a lil more positive tomarrow .........just maybe......lol
who know s maybe all my new friends will rub off their positivty on me lol i hope so big shout out of love to all of you out there fighting and even when the days get depressing and seem hard and miserable we can win tomarrow .....just maybe ........we cna overcome our emotions of negitive origins............
and mayeb tomarrow i wont be sad or mad or pissed the fuck off at the world ........just maybe
and tomarrow i might not be let down by the people in this world and their thoughtless actions...........
just maybe ....................
or...........
maybe not
lol
there is snow and who can be happy when its cold as fuck
i hate snow
see look im being negitive again?? any tips for staying positive ? any tips for getting out of a depression hole once the sinking starts?
http://youtu.be/k0HJMcEVHzs
Saturday, November 24, 2012
Monday, November 19, 2012
my interveiw with the amazing and strong, ......donna mear
i had the pleasure of interveiwing an amazing woman ! she inspires us in the ibd communty so much and i think its so amazing that no matter what she goes thru in life she always seems to be so positive, despite all the obstacles life had given her she still has such hope and wisdom!thankx so muchd onna for sharing your wisdom with us!! i thank you very much for sharing your story with me and the world donna you are an inspiration to us all!! donna mear inspired me to create a new series of blogs of witch this is the first titled "Perspectives: thru the eyes and minds of ibd paitents" in this series of blogs i will be interveiwing people from all differant perspectives of ibd in hopes that thru sharieng each differant story we can all help the public understand how crohns and uc actually affects the paitents both mentally, spiritually and physically! I also want to showcase how differantly these diseases vary from person to person! thank you so much donna for inspireing a new series of blogs in witch i to dedicate to you.............
Crohns or UC?
donna: Although I was diagnose with UC after a few months they thought it could be crohns due to my history with ‘ibs’. They changed the diagnosis to inderterminate, meaning they weren’t sure. when I had my colon removed they prformed tests which confirmed it was UC.
Had you heard of IBD before being diagnosed?
I had not heard of crohns or UC before being diagnosed, I had no idea what they were, I wasn’t given any information when I was diagnosed. Much later Ifound out that my husbands nanna has crohns. People are open about many ther medical conditions but IBD is kept quiet like a dirty secret! it kind of makes me think of how aids and HIV used to be viewed.
Have you ever been in remission?
donna: I was still in a bad way when I gave birth to my daughter, I was still in hospital due to the UC and didn’t know I was in labour till her head began to appear. After I gave birth I began to breastfeed. I had breastfed my son for 2 years and had every intention of feeding my daughter. within 2 weeks of her birth my disease went into remission. colonoscopy showed no ulceration or bleeding. My symptoms returned to previous ‘ibs’ type symptoms but these were liveable. The fact that I went into remission as soon as i started feeding my daughter made me think whether this was linked. Then I remembered I was hospitalised very soon after stopping feeding my son. This had me worried so I fed her for as long as possible - just over 2 years. As I suspected as soon as I stopped feeding my daughter I fell ill again, to the same level I was when I was diagnosed.
is there anything you woudl liek to say to people who think that ibd is not a serious disease?
donna: That both crohns and colitis are both serious illnesses and can kill! doctors don’t just remove organs from he body for the fun of it! Also neither is worse than the other! they have there differences but are equally devastating! The only difference is UC is confined to one area. UC attacks can be much more severe than most crohns attacks and are more likely to cause toxic megacolon, perferation and death, but on a positive once the colon is removed you are cured, though it is quite a drastic life changing cure! Crohns on the other hand is much more chronic, can attack any part of the digestive system, is harder to control, it devastates lives, and is incurable. crohns is a life sentance.(chrystal adds to this with :crohns also can effect all parts of the body as well like the eyes, brain, skin, bones and spine)
What would you like to say to unsupportive people?
donna: Try walking in our shoes! When I said my wedding vows I meant every word! for better and for worse, in sickness and in health! I am so lucky to have a loving supportive husband who has stuck by me and given me the strength to fight, I would have done the same if it was the other way round! I have also been lucky to have supportive family and friends, but I have also lost some family and friends due to the disease. i think it is a good way to find who the decent people are! I have heard of friends whose husbands and family have been unsupporting and have left or abandoned them when they needed them the most. Seeing this happen makes me angry! We are not lazy! We did not ask for this! You can’t see cancer but as soon as someone mentions the word it is a free pass! mention IBD, and the response is totally different.
How did being diagnosed impact personality and spirituality?
I have always been a christian, and my battle with UC, has not damaged my faith, it has made it stronger. I had to rely on god to give me the strength to fight, and also the ability to fight fear. I prayed for surgeries to go straight forward with no problems, and both times I have defied the normal and healed and got better much quicker than expected. I have always gone out of my way to help people, I try to live my life like jesus would. When I was diagnosed and when I was battling with the bag, many ‘strangers’ helped me and supported me, showing me friendship and compassion, because of that, I see it as my obligation to do the same to help others, and in turn hope they go one to help others. the best support is from people ho have been there, who are willing to walk the walk with you and pick you up when you fall.
Surgeries?
I have had 2 surgeries, the first was to remove my colon and to give me an end ileostomy. My second surgery was to remove my remaining rectal stump.
Emotions before surgery?
Before my first surgery my emotions were all over the place! I had no experience of what a stoma was. It is such a taboo subject. h thought of pooing into a bag that was going to be constantly attatched to my stomach was not what I wanted! Me and my husband had many arguements because he anted me to have the surgery! He wanted his wife back, not for selfish reasons but because he knew how miserable I was! I met people who had bags, and realised you could not tell, and I began to think i could have my life back. What made me finally decide to go ahead, was when my surgeon said he was willing to put money on me being an emergency case within a month if i didn’t take it then. This plus him teling me if I was an emergency he couldn’t guarantee he would be doing it and it would most likely be open surgery made me finally decide to take the plunge! my bag gave me my life back and has allowed me to do all the things I loved to do before being diagnosed with UC
My second surgery was 20 months later. my remaining piece of rectum was being attacked by the UC nd was in a bad way. As i already had a bag for life, removing that annoying pain in the backside was an easy decision!
How did IBD effect your self esteem?
I was always outgoing and confident. But with the many accidents that I ended up having due to UC and how humiliated I felt I found I was no longer as outgoing. I used to love hiking and camping and watersports. i would go swimming all the time. I never took my daughter swimming till after I got my bag, when she was 3 yrs old! UC destroyed me, my bag has gien me my confidence back and i’m now an even better version of the person I was before, probably as I’m now thankful for everything my bag allows me to do.
Why do you think you got IBD?
IBD is a type of auto-immune disease. we are born with the auto-immune disease, it just has tobe switched on or triggered, a bit like turning on a light. something might trigger it and it arise as a different auto-immune disease. it is looking for a weakness. I was bottle fed as a child, weaned onto food very early so my mum could go to work. my diet as a child and teenager was not very good, and with a history if ibs in the family my bowels were already a weak spot. I think the hormones in pregnancy, or something related to the pregnancy of my daughter triggered the auto-immune disease and it attacked the weakest part of my body, my bowel.
When I was diagnosed.........
donna: I had always had ‘IBS’ and had been hospitalised a few times for it but they never did any tests, just dealt with the problems. I was diagnosed with UC when I was 7 months pregnant with my daughter evangelina. i began getting heavy bleeding from my back end along with severe diarrhoea and a lot of pain. I went to my gp and he just aid it was the pregnancy effecting my IBS and that the bleeding and pain were from piles. he gave me laxatives even though I told him I had diarrhoea! I went back later that week and he gave me fibergel! This continued for a couple of weeks, I was going to the toilet upto 40 times a day and was getting a lot of urgency and was getting very tired with the blood loss. My husband took me to hospital where I was given 4 pints of blood and they diagnosed UC. I was told they may need to perform emergency surgery if they couldn’t bring it under control. I was in hospital for the majority of the remainder of my pregnancy. i was allowed home for christmas and new year but was straight back in after.
Crohns or UC?
donna: Although I was diagnose with UC after a few months they thought it could be crohns due to my history with ‘ibs’. They changed the diagnosis to inderterminate, meaning they weren’t sure. when I had my colon removed they prformed tests which confirmed it was UC.
Had you heard of IBD before being diagnosed?
I had not heard of crohns or UC before being diagnosed, I had no idea what they were, I wasn’t given any information when I was diagnosed. Much later Ifound out that my husbands nanna has crohns. People are open about many ther medical conditions but IBD is kept quiet like a dirty secret! it kind of makes me think of how aids and HIV used to be viewed.
Have you ever been in remission?
donna: I was still in a bad way when I gave birth to my daughter, I was still in hospital due to the UC and didn’t know I was in labour till her head began to appear. After I gave birth I began to breastfeed. I had breastfed my son for 2 years and had every intention of feeding my daughter. within 2 weeks of her birth my disease went into remission. colonoscopy showed no ulceration or bleeding. My symptoms returned to previous ‘ibs’ type symptoms but these were liveable. The fact that I went into remission as soon as i started feeding my daughter made me think whether this was linked. Then I remembered I was hospitalised very soon after stopping feeding my son. This had me worried so I fed her for as long as possible - just over 2 years. As I suspected as soon as I stopped feeding my daughter I fell ill again, to the same level I was when I was diagnosed.
is there anything you woudl liek to say to people who think that ibd is not a serious disease?
donna: That both crohns and colitis are both serious illnesses and can kill! doctors don’t just remove organs from he body for the fun of it! Also neither is worse than the other! they have there differences but are equally devastating! The only difference is UC is confined to one area. UC attacks can be much more severe than most crohns attacks and are more likely to cause toxic megacolon, perferation and death, but on a positive once the colon is removed you are cured, though it is quite a drastic life changing cure! Crohns on the other hand is much more chronic, can attack any part of the digestive system, is harder to control, it devastates lives, and is incurable. crohns is a life sentance.(chrystal adds to this with :crohns also can effect all parts of the body as well like the eyes, brain, skin, bones and spine)
What would you like to say to unsupportive people?
donna: Try walking in our shoes! When I said my wedding vows I meant every word! for better and for worse, in sickness and in health! I am so lucky to have a loving supportive husband who has stuck by me and given me the strength to fight, I would have done the same if it was the other way round! I have also been lucky to have supportive family and friends, but I have also lost some family and friends due to the disease. i think it is a good way to find who the decent people are! I have heard of friends whose husbands and family have been unsupporting and have left or abandoned them when they needed them the most. Seeing this happen makes me angry! We are not lazy! We did not ask for this! You can’t see cancer but as soon as someone mentions the word it is a free pass! mention IBD, and the response is totally different.
How did being diagnosed impact personality and spirituality?
I have always been a christian, and my battle with UC, has not damaged my faith, it has made it stronger. I had to rely on god to give me the strength to fight, and also the ability to fight fear. I prayed for surgeries to go straight forward with no problems, and both times I have defied the normal and healed and got better much quicker than expected. I have always gone out of my way to help people, I try to live my life like jesus would. When I was diagnosed and when I was battling with the bag, many ‘strangers’ helped me and supported me, showing me friendship and compassion, because of that, I see it as my obligation to do the same to help others, and in turn hope they go one to help others. the best support is from people ho have been there, who are willing to walk the walk with you and pick you up when you fall.
Surgeries?
I have had 2 surgeries, the first was to remove my colon and to give me an end ileostomy. My second surgery was to remove my remaining rectal stump.
Emotions before surgery?
Before my first surgery my emotions were all over the place! I had no experience of what a stoma was. It is such a taboo subject. h thought of pooing into a bag that was going to be constantly attatched to my stomach was not what I wanted! Me and my husband had many arguements because he anted me to have the surgery! He wanted his wife back, not for selfish reasons but because he knew how miserable I was! I met people who had bags, and realised you could not tell, and I began to think i could have my life back. What made me finally decide to go ahead, was when my surgeon said he was willing to put money on me being an emergency case within a month if i didn’t take it then. This plus him teling me if I was an emergency he couldn’t guarantee he would be doing it and it would most likely be open surgery made me finally decide to take the plunge! my bag gave me my life back and has allowed me to do all the things I loved to do before being diagnosed with UC
My second surgery was 20 months later. my remaining piece of rectum was being attacked by the UC nd was in a bad way. As i already had a bag for life, removing that annoying pain in the backside was an easy decision!
How did IBD effect your self esteem?
I was always outgoing and confident. But with the many accidents that I ended up having due to UC and how humiliated I felt I found I was no longer as outgoing. I used to love hiking and camping and watersports. i would go swimming all the time. I never took my daughter swimming till after I got my bag, when she was 3 yrs old! UC destroyed me, my bag has gien me my confidence back and i’m now an even better version of the person I was before, probably as I’m now thankful for everything my bag allows me to do.
Why do you think you got IBD?
IBD is a type of auto-immune disease. we are born with the auto-immune disease, it just has tobe switched on or triggered, a bit like turning on a light. something might trigger it and it arise as a different auto-immune disease. it is looking for a weakness. I was bottle fed as a child, weaned onto food very early so my mum could go to work. my diet as a child and teenager was not very good, and with a history if ibs in the family my bowels were already a weak spot. I think the hormones in pregnancy, or something related to the pregnancy of my daughter triggered the auto-immune disease and it attacked the weakest part of my body, my bowel.
Sunday, November 18, 2012
how rude!! the most unknowlegdeable judgements regarding ibd!
what is the most insulting rude thing someone has said to you about ibd? well i ask a group of ibd paitents i know just that and a few other thigns as well here are some responces.....what was the thing said to you since being diagnosed with ibd that hurt you the most? what was the most unknowlegdeable judgement voiced to you regarding ibd?
I THINK THAT DUE TO THE LACK OF CROHNs and UC IN THE MEDIA AND OUR SOCIETIES DEPENDANCE ON THE MEDIA TO INFORM THEM THAT MOST PPL HAVE NO IDEA WHAT IBD IS??i think we need to speak out and stop people from judgeing crohns and uc without the knowledge to do so!! its rude!!! so here my favorite ........how rude!!! moments from real paitents peopel hurt with their creul ignorant mouths!! we think you should bite your tougue, especially if you have fuckin clue!!!! ! i think the top wtf how rude ibd moment issss......drum roll please!!!! " shouldn't u be use to hurting all the time? Its called moans disease not crohns.." whoever said thta you shoudl feel pretty shittyy about yourself and had to have soem nerve to say that to someone!! get some caompassion people and educate yourselves before judgeing others, expecially on things they cannot controll like horrible diseases that fuck up your life! !! i think that society has really gone down hill that these things below are said to good beauitfull souls who just happen to be fighting diseases that the public doesnt seem to understand. so please if you have soemoen in yrou life fighting crohns or uc you need to be supportive hold their hand thru the pain and be nice for goodnesssake and please if yoru frustrated go read about these diseases and try to understand what yoru friend or family member is goin thru they need you right now and not to judge them!
Saturday, November 17, 2012
the perfect life
hey eveyrone thaNKX for reading my blog, today im going to be discussing my issues with anger and feelign like i have been done some great injustice by the universe. i have alot of issues with seeing other peopels beautifull lives and successfull careers and i mena its alot deeper than just jelousy .....lol im sure we all feel liek that but i look online and look at the world and see people living perfect lives where nothin bad has ever happened to them and they have had evyer oppertunty turn out in their favor and i cant help but wander why i have had so many bad thigns happen to me and why others seem to have this perfect existance and i wander why is it that the universe felt this need to give me so much pain and suffering when it grants others a perfect life. i just feel like i have had wayyyy over my share of disease diagnosis's , abuse, torture, stolen dreams and broken promises. i look at people aroudn me with perfect health perfect careers, perfect bodys perfect eveyrthing and i cant help but cry. my body has strech marks and my tumym is swollen my career was stolen by disease my childhood was horrid and i just keep on gettign a bad deck of cards delt out. I feel like my chance at the perfect life was stolen from me by disease abusesive childhood and a cruel hand of fate and it makes me think why why is it that certain people get blessed with the perfect life to take for granted and others get cursed with pain, who decides who ???who decides what?? and how can i get the perfect life the next time around?? i cant help but morn my lost career and morn my stolen chidlhood and my chance to lead a normal life but i hope that in this life by tryin to help as many ppl as possible and tryign to be as good of a human being a sa possibly can i hope to next time in my next life i really hope to have an easier go around i hope that by being the best possible human thsi time i wont inhearit another life liek thsi one........i know im blessed to have my child and to have true love and i never once for a second take that for granted but i still cant help bu t wish my life had been differant in many ways and i cant help but be jelous of the people who seem to have eveyrthign so perfect..........i cant help but wander what i did to desvere this lif ein my past life i cant help but wander what peopel with perfect lives did do earn them??? i cant help but wish we all got the perfect life and i do so wish that in my next life i have earned the perfect life!i am not ashamed to say i am so jelous of people who are healthy i am not ashamed to say that this is not abnormal to have these feeligns and i vow to one day have the perfect life .............. i might go and cry myself to sleep again tongiht but i will oen day be the person who never crys herself to sleep! and maybe in this life i just might earn the perfect life.............and the media sur edoesnt help the situation all thsoe perfect people ect.....dpotn get me starte dont he media lol ...........................i might have my night terrors tonight and wake up in pain but mayeb one day i wont..........maybe one day you wont either.......
learn more about my life in my uncensored interveiw with sarah below is link!
http://
learn more about my life in my uncensored interveiw with sarah below is link!
http://
Wednesday, October 31, 2012
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
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
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
Friday, September 28, 2012
my painting "broken dreams:the pain of crohns and uc"
this is the imag ei created to help ppl who do not have crohns disease and uc understand the huge amount of pain we fight everyday ! understnad what this disease has taken from us and what it does to our bodies! what you are seeing is at th...
e top right is the nerves fireing pain under that isa actal reproduction of my personal cat scan results of an infected, diseased illium that has crohns disease and intestines below is an colonoscopy result the inside of an absessed bleeding ulcer ridden colon with infection and bad disease and alot of mucus and scar tissue, beside that is the brain centers that recieve pain illuminated and in her ear is a broken dreamcatcher to portray her lost dreams and the pain that has stolen them and she has to fight to reach them harder eveyr day, above is a woman recieveing remicaide treatment via blood infusion and portrays the pain and suffering of negitive dr visits and hopsital visits and being a proffesional paitent, thsi is life with crohns disease i fight every day to overcome thsi disease and the complete lack of understanding in our soceity! i hoe this helps the public udnerstand how much pain we have and how important it is to find us a cure fight hard crohnnies!
See Morewhat crohns disease taught me about life
what did crohns disease teach me about life?
being diagnosed with a terrible chronic illness is not all bad lol, it can teaCH you alot about other people, and how creul or kind they can be. It can teach you what is really important in life and in society. it taught me that every second of my life is fought to exist, that everythign i do or say coudl be my last word or action, and that this human existance can be a creul unfair experiance but still be the most beauitfull life you ever lead. It taught me to appreciate every little thing. It taught me who cares and who doesnt it taught me how to be strong and how to face death and to live every breathe as my last, it taught me how important it is to me to leave my mark on society on this plain of existance. Crohns taught me how important pure uncensored self expression is to the human conciousness.
it taught me that no matter how bad things hurt no mater how cruel that society cna be you dont give up you fight and you fight hard. for me with crohns came the urge to end my life, thsi is a controversial subject to many with crohns the struggle seems like alot but crohns taught me that its worth it i am worth it i am worth the struggle to exisit, i am nolonger suicidal, not today maybe tomarrow,i will struggle again but i will try as hard as i can to have a tomarrow. i is hard to have the depression and axiety so often not discussed that comes with chronic illness, it is one fo the most difficult thigns to overcome wakign up in pain and feelign liek yoru life has been stolen by diseaSE BUT IT HASNT! you can still lead yoru life, crohns is a horrible disease but you can still live while your here.if peopel around you dont understand what your going thru its ok ,educate them!if they still judge you and dont udnerstand after you educate them on crohns and hwo effect syou then fuck them! people can live happy, long lives that greatly impact this existance with crohns.our lives might be a little harder but dont give up! that may be the most important lesson that crohns disease taught me and thats to never give up hope! crohns disease taught me no matter how hard it gets, how negitive i feel sometimes, that people here on this earth do love me and need me to keep fighting and they love and need you too, never give up!!! here is a link to a site list national crisis help hotlines http://suicidehotlines.com/national.html
i suggest to all that get diagnosed to join a facebook support group or soME other support group you are not alone! a good support group is ran by etan at http://www.facebook.com/#!/groups/285912844844091/286645411437501/?comment_id=286670938101615¬if_t=group_comment_reply
even if we are in pain there are still the good days make the good days count and try to get past the bad days beaucse like that song "the sun will come up tomarrow" if you are having trouble dealing with your disease and coping with the diagnosis please seek help do not be ashamed of how you feel despite the lack of discussion around the subject it is common to feel sucidal/seriously depressed with a chronic illness and you might need to seek a counselor or phycitrist in your area. please do so you do not have to fight alone! millions of people fight crohns disease everyday and we are fighting with you holding your hand in spirit! in my blogs i will be discussing and bringing up controversial subjects, tabboos or unspoken things that people with crohns fight with every day!
being diagnosed with a terrible chronic illness is not all bad lol, it can teaCH you alot about other people, and how creul or kind they can be. It can teach you what is really important in life and in society. it taught me that every second of my life is fought to exist, that everythign i do or say coudl be my last word or action, and that this human existance can be a creul unfair experiance but still be the most beauitfull life you ever lead. It taught me to appreciate every little thing. It taught me who cares and who doesnt it taught me how to be strong and how to face death and to live every breathe as my last, it taught me how important it is to me to leave my mark on society on this plain of existance. Crohns taught me how important pure uncensored self expression is to the human conciousness.
it taught me that no matter how bad things hurt no mater how cruel that society cna be you dont give up you fight and you fight hard. for me with crohns came the urge to end my life, thsi is a controversial subject to many with crohns the struggle seems like alot but crohns taught me that its worth it i am worth it i am worth the struggle to exisit, i am nolonger suicidal, not today maybe tomarrow,i will struggle again but i will try as hard as i can to have a tomarrow. i is hard to have the depression and axiety so often not discussed that comes with chronic illness, it is one fo the most difficult thigns to overcome wakign up in pain and feelign liek yoru life has been stolen by diseaSE BUT IT HASNT! you can still lead yoru life, crohns is a horrible disease but you can still live while your here.if peopel around you dont understand what your going thru its ok ,educate them!if they still judge you and dont udnerstand after you educate them on crohns and hwo effect syou then fuck them! people can live happy, long lives that greatly impact this existance with crohns.our lives might be a little harder but dont give up! that may be the most important lesson that crohns disease taught me and thats to never give up hope! crohns disease taught me no matter how hard it gets, how negitive i feel sometimes, that people here on this earth do love me and need me to keep fighting and they love and need you too, never give up!!! here is a link to a site list national crisis help hotlines http://suicidehotlines.com/national.html
i suggest to all that get diagnosed to join a facebook support group or soME other support group you are not alone! a good support group is ran by etan at http://www.facebook.com/#!/groups/285912844844091/286645411437501/?comment_id=286670938101615¬if_t=group_comment_reply
even if we are in pain there are still the good days make the good days count and try to get past the bad days beaucse like that song "the sun will come up tomarrow" if you are having trouble dealing with your disease and coping with the diagnosis please seek help do not be ashamed of how you feel despite the lack of discussion around the subject it is common to feel sucidal/seriously depressed with a chronic illness and you might need to seek a counselor or phycitrist in your area. please do so you do not have to fight alone! millions of people fight crohns disease everyday and we are fighting with you holding your hand in spirit! in my blogs i will be discussing and bringing up controversial subjects, tabboos or unspoken things that people with crohns fight with every day!
art and crohns disease
I went on disability for my Crohn's after I got fired from repeated jobs. One being an awesome job I loved so much as an art therapist for severe Alzheimer's patients. Loved it so much I'm still devastated that I had to be fired. Jobs I have had , I have found do not like to work around diseases, unfortunately, especially diseases that make you throw up in the trash can at work often, apparently you cant do that because people suck, and think your contagious (Crohn's is not contagious idiots)and complain to the union who fire you. They don't like you to spend weeks in the hospital either and they certainly get really mean when you spend a long time repeatedly in the bathroom. Some places I worked for that fired me over and over. Do you know how devastating that is? huh? yeah it is, I loved that job so much damn lady firing me!! How rude! Then my old Dr said he thought working was causing a lot of stress on my disease and I didn't have health insurance and he thought I should go on disability and wrote this note and recommended I get a lawyer, so here I am, a disabled artist fighting to live a life with this lame ass chronic illness, that keeps fucking shit up. So I have no career. I'm what i call a professional patient, it s lame. Just so you know.
people think its so great to be disabled because you don't have to work, well its not. It fucking sucks and i hate it. people forget hello!!!! If your disabled your sick and in pain all the time and you cant do nothing that's why you cant work hello! It sucks! Trust me people a lot of you hate your jobs and working but when its taken away from you by a shitty ass lame disease then you realize what you lost, your damn career. Now i get to go to Dr's all the time. Lame that sucks!! Its like a job being sick!! You have to be at this Dr at this time. The Dr says you can't do this can't do that. Dr says you need to take this pill and eat this food or clear liquid diet or no solid food or no coffee no liqueur no this no that its lame dude. Dr's suck and you have to wait forever in their office and their receptionist is rude or nosy or wants your insurance card even though shes seen it ten thousand times and i always cant find the damn thing. The Dr never make s you better either at least not in the thousand times I've been there, there is no cure and another reason why being disabled sucks cause it does everything about it does but most of all it sucks because your sick and none of your (except Christi n Jake) friends or family understand what your disease is. They don't understand why your sick and always have to say the worst possible thing even if they don't mean it. They always wanna give you their damn advice. They don't know what they are talking about so yeah I hate Crohn's disease. I hate having it and I wish they would cure it so I can have my damn life back. I'd say that about does it for the first post. What do ya think? Chrystal... also big thankx to etan for editing this as well you rock!
people think its so great to be disabled because you don't have to work, well its not. It fucking sucks and i hate it. people forget hello!!!! If your disabled your sick and in pain all the time and you cant do nothing that's why you cant work hello! It sucks! Trust me people a lot of you hate your jobs and working but when its taken away from you by a shitty ass lame disease then you realize what you lost, your damn career. Now i get to go to Dr's all the time. Lame that sucks!! Its like a job being sick!! You have to be at this Dr at this time. The Dr says you can't do this can't do that. Dr says you need to take this pill and eat this food or clear liquid diet or no solid food or no coffee no liqueur no this no that its lame dude. Dr's suck and you have to wait forever in their office and their receptionist is rude or nosy or wants your insurance card even though shes seen it ten thousand times and i always cant find the damn thing. The Dr never make s you better either at least not in the thousand times I've been there, there is no cure and another reason why being disabled sucks cause it does everything about it does but most of all it sucks because your sick and none of your (except Christi n Jake) friends or family understand what your disease is. They don't understand why your sick and always have to say the worst possible thing even if they don't mean it. They always wanna give you their damn advice. They don't know what they are talking about so yeah I hate Crohn's disease. I hate having it and I wish they would cure it so I can have my damn life back. I'd say that about does it for the first post. What do ya think? Chrystal... also big thankx to etan for editing this as well you rock!
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