Wednesday, April 17, 2013

your hair and crohns !!! my voyage with a fro and info on med induced hair loss

hey guys srry i ve been neglecting you!! been super busy with my daughter and bellydance classes art and whatnot but i havent forgot you my darling bloggers! ;)
so today im tlakign about med induced hair loss and m,y long long journey to get long long hair! ;)

most of you know i have been growing out my at one time thick curly locks, or my fro as i call it, for around say 6 yrs! http://medical-dictionary.thefreedictionary.com/Crohn's+disease   remicaide can cause hair loss no matter what your doctor says i deifnatly think it can !! and that fighting me and the fact that crohns itself can cause inflammation in the hair folicle that cna make hair stopg rowing or slow its growth!


me really super sick and havin a dye job gone bad eekkk and the fro is flying ;) not happy chrystal

straghtened now if your growing out yoru hair and its like mine well finicky i suggest not straightening it for a while and if you do rarely go striaght i say use an instyler i luv em! they cause less damage to the hair shaft!

my bad hair extensions, ekk but im desperate how coem my hair wont grow?? extentiosna re a great option but go with natural hair not synthetic liek thsi one is and just opt for the straight extensiosn not the curly they get icky, faster,
black is not my color
and go for the separate peices not the half wig liek this! eek!

aww my fav color, i also suggest you stop dyign yoru hair asap!! im guilty as charged i luv to dye my hair im addicted to it!

bangs not so great for curly hair and a hassle and take foreve r to grow back out !!  remember that if yoru a curly girl!

still tryign to grow that fro!




now here it is my current fro in all its curly glory!

doing the special effects for an awesome music video dawn of the dub speakerboxer and my hair finnaly looks like its grown and how well im gona share that with you !!
tomarrow se eyou here same blog entry ill add more tomarrow guys! and a video of soem great diy hair masks





you are not alone med induced hair loss, thinning and lack of growth can seriously effect womens self essteem, and nobody speaks out about it! speak out raise up and try to be there for one another in the ibd communty. and outside it as well in our support systems and friends, reach out and help soemone it will make you feel better i promise;) i am no longe rhaving hair loss from my remicaide and i am startin to get lil "kitchen" i call it or new hair growth and after a yr on remicaide i have no more excissive hair loss thnak goodness and it is common for ppl on remicaide to have hair loss for a while but dont give up or get down about it there are things you can do, it gets better over time with the infusions!




Tuesday, January 22, 2013

event with the ccfa! call to artists!!

heloo every one i am planning an event with the ccfa! the crohns and colitis foundation of america!
i am also accepting any donations of any items in good shape to put in baskets to auction off thankx to everyone!
'Fighters' Art Exhibit Opening Reception
Friday, March 15h
Local artist Chrystal Robinson is hosting “Fighters”, an art exhibit about chronic illness
at Jupiter Studios in Alliance, Ohio (http://www.jupiterstudios.org)

Proceeds benefit CCFA Northeast Ohio. Admission is $5, available for purchase at the door.Live music by Michelle Ferguson plus the Jovian Sound Escape, snacks, speakers, & art auction.

CALL TO ARTISTS:

Artists of all ages and skill levels encouraged to submit work. Entries of original artwork welcome: all media including short stories and poems, paintings, and drawings, etc.
Artwork on all subjects accepted, those related to journeys with chronic illness prioritized. You need not be a professional
artist or writer to participate! Please submit two - three visual pieces, including one of your choosing for to the art auction.
For poems and short stories, please specify whether you plan to recite or if you would ike another artist to read on your behalf (or anonymously).
Deadline for Art submissions: March 1st.

Contact Chrystal with submissions and any questions: mystikchrystal@hotmail.com

Location

Jupiter Studios
346 E Main St
Alliance, OH, 44601

For more information

386 Park Avenue South, 17th Floor, New York, NY 10016    |    800-932-2423    |    info@ccfa.org
© 2013 Crohn's & Colitis Foundation of America
update!!!!

w eraised over three hundred dollars thankx to eveyrone, jupiterstudios the ccfa, heather hendrix at art in motion dance studios, ian and lindsey at hungry howies, dorsey ney at healthy heart thankx for yoru donations!support local businesses! thanks to all the speakers and ppl who came ect. ect. thankx for all yrou help! xo chrystal

unpredictable crohns and the effects of stress

hey eveyrone so sorry i havent written for a while ive been super sick and in alot of pain, this is no remmission, thats for sure! so crohns is super unpredictable looks like my remmission is over! i foudn a great new gi! working on getting better! ive been super stressed alot of stuff has gone wrong my dog is sick im sick my pipes froze the renters are moving out coreys hours got cut, and the list goe sonn and on and on ugh eveyrthings gone wrong latly so im trying to not fade into a deep depression here, but its definatly hard. im havign problems with my eyes and almost went blind now my vision is soooo blurry and i have to take steroid eye drops its freezeing cold here like 6 degrees eek i felt like i was having a panic attack today stress and crohsn disease is super super bad it makes eveyrthing wayyy worse wayyyyyyyyy worse but how does one stay stress free in todays world???

i havent got a clue but some things help a little

one is meditation chakra meditations or healing meditations wher eyou imagine the light the warm light the healing light flowing thru your body ect. 

two is adivan and a good angry vent to a friend lol

three is i dotn know so if you know please tell me cuz im extreemely stressed lol

you can never know when crohns will strike out i hope too se eeveyrone at my event we have changed the date to march 15th please email me with submission the submission deadline has been extended! mystikchrystal@hotmail.com

Saturday, November 24, 2012

positivity: the struggle with the negitive inside my brain

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

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.............






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!


i had someone close to me say recently that oh its just diarRea youll be fine its not that bad , i meaN YOU REALLy NEED To QUIT TAKIGN THOSE MEDS BEFORE THE DRS KILL YOU!

  • I had a supervisor tell me that there was nothing wrong with me and I was making myself sick.
  • I think the most insulting thing was "if you feel bad why dont you go to the drs?" Yeah cuz that never occurred to me in the 4 years I was living in constant pain. Like I didnt go to multiple drs, multiple ERs. a native american medicine woman....you name it I went to them but it finally came down to saying I cant afford 50 dollar copays for them to tell me I am fine go home. I may as well stay home and save the copay and gas money. I know it wasnt said to be mean but it made me feel like they thought I was too stupid to go to the drs.
  • I think the worst thing since I have been diagnosed (thank God finally diagnosed) has been well you should feel better now that you know what is wrong with you. Yep just like finding out you have cancer means you are cured just cuz that lump now has a name. Yeesh.
  • · Last week when my mums friend said 'oh you have crohns' and I said 'no I have UC' to which she said, 'well nothing serious then, could be worse you could actually be ill and have crohns!'
  • When Ӏ overheard my next door neighbours speaking in Afrikaans ( which Ӏ understand ) about the medicine (chronic) that gets delivered here every month. The husband said to the wife ( Ӏ weighed ten kg's less then Ӏ do now cos Ӏ was battling to eat) "there's nothing wrong with her she is a bloody anorexic and if she just stopped taking all those pills she would be fine.."

    Ӏ have explained Crohns to them.. They laughed .. As they have sub zero intelligence but unfortunately they spread a rumour about what they said around the complex Ӏ live in .. Ӏ now pretend they don't exist. :( nasty!

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://www.myjourneywithcrohns.com/2012/11/interview-with-chrystal-creator-of.html