I am asked daily to do fundraising for Cancer as I own a Hairdressing Salon. "Can you supply your staff to shave 6 people's heads at the local pub or club to raise money for so and so as he/she has mounting medical bills and needs our help."
Of course I say yes and we go and we also donate but I haven't drawn a wage in 4 years, I also have medical bills, lucky I have a wonderful supporting husband that understands I am 53 yo and have 4 adult children.
PBC is not understood at all but Cancer is (sadly) almost a household name. So much money is raised for research what is done for PBC sufferers?
Or the Organ Donation Registry?
I lost my friend to PBC he got a virus in his heart and couldn't be transplanted.
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Julez1961
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Thank you Jpmac, I am too, my friend thought he'd get a transplant but got a virus instead and died. I met him in the hospital. I'm 53yo and have 4 adult children I want to see get married and have my grandchildren but with the lack of awareness about PBC and funding it worries me that I won't. I get the but you look so well all the time even from the transplant team, I try my best to look well and have always taken pride in my appearance so why would I stop the it just takes longer and more rest stops to achieve these days.
I wish you all the best hopefully you will get more good days than bad.
You sound like a strong determined person.. Keep thinking positive thoughts and I'm sure you will be around for a good few years.. You are very blessed to have four Kids, enjoy your family and the joy they bring each and every day.... I'm hoping I'll have at least one child one day.. The more time that passes and the more pain I get.. I'm thinking it will never happen..
Thank you, sometimes I act stronger than I am, but I am stubborn and competitive.
The Psychologist at the hospital thinks I'm so hard on myself because I am a control freak! Nice!!
I hope one day you will be blessed with a child, they keep you going. I have a lot to live for, I want to see them get married and have children of their own. My son is 30 and living with his girlfriend with no intention of getting married or having children, my eldest daughter is 28 she has just bought a house with her boyfriend and the have a dog (my grand dog) my next daughter is 24 and just moved in 3 weeks ago with her boyfriend and has no plans past tomorrow! last but not least the next daughter is 23 next week and apparently lives here with us, but stays every night with her boyfriend and uses her bedroom as a change room!
My husband and I have been married 34 years next month so that is pretty darn good.
Keep strong and keep sharing it helps to talk about things.
Hi, I totally agree, because I look well, people think your ok, I suffer in silence most of the time, you say you suffer with fatigue and people just say, ooh your tired, my occupational health doctor has sad I'm well enough to return to work next week, I'm 40 with 2 small children and don't know how ill manage back in full time work, I'll give it a go, I also mentioned to my doctor about weight gain, she said its time I got up and did exercise and offered a dietician, not thoughtful as some days I struggle to get out of bed, we need a pbc awareness campaign
I sympathise wholly with you regards you suffering from fatigue. I suppose I've been fortunate since my first year knowing I had PBC (diagnosed Dec 2010) due to fatigue simply vanishing. I am still left with the itching that can keep me awake during the night which then manifests into feeling very tired during the afternoon.
Majority of my family just do not get it with regards to PBC. My brother mistakenly informed me a couple months ago when I said I felt so tired early evening that 'everyone gets tired' so I tried to ignore it.
As you have said, Cancer is almost a household name while PBC has only been diagnosed within the last 20yrs and is still an enigma and most research is done in America, and little in Europe because it is too expensive, for example even with a liver transplant it has a 45% chance of recouring and when the liver starts to eventually breakdown it draws the other organs with it, Kidneys, Heart etc; and I hear so much about URSO, Urso is not a treatment for PBC it is simply a medication to alleviate the side symptöms, Pruritis, Lethargy etc; and as for looking well;, well who sees us when we feel like shxx, when we can hardly move as our livers are so swollen and painful, scratched so much that our hands and arms bleed or are so tired that we can hardly lift our heads, and if you mention PBC to anyone, it`s never èard of it!.
Thank you, actually I now live in Spain, I was living in Germany when I was diagnosed at the University hospital in Düsseldorf in 2006, I have refused to be listed for a transplant and my doctors here say that under the circumstances they are just trying to keep me comfortable.
Take it from me bobanglo1, don't bother about these so-called stages of PBC, I don't! I just can't be bothered with wanting to find out anything like this. It's never been mentioned to me as I had symptons of PBC, abnormal LFTs and the AMA test and that was how I was diagnosed. No mention of biopsy for this staging.
I think with scans and bloods it can be known how one is going on. I'd rather get on with living.
Thanks for your short reply. Yes I do think that PBC can get 'on top' of us from time to time. I refused myself to accept I had PBC after diagnosis. I simply thought that I could somehow rid myself of it but 3yrs on, I'm still here and still plodding along.
I then decided that I can't get rid of this PBC but all I can do is try to make sure that I look after myself even better than I thought I did and live life now, not try to think about what could be ahead as sometimes the could may not arrive.
Even for someone at a stage of cirrhosis with PBC that can apparently go on for years and years.
I think we all owe it to ourselves with PBC to make the best of what we have now and cram asa much into our lives we possibly can with an unknown future.
Thank you all, I thought when I posted that comment that no one would understand but obviously I was wrong!
No one posts a horrible photo of themselves or goes out without putting in some effort to try and not scare anyone. But we need to raise awareness of this hideous indiscriminate disease. Apparently in Spain Organ Donation is an opt out system, not an opt in system like Australia. So more people get a transplant and there are no lists.
Please keep strong everyone all we have is a sense of humour until you get encephalitis! Ha ha!
I always here if anyone wants to chat x
I was in the first instance diagnosed with non hodgkin's lymphoma and they were just about to rush ahead and start chemo, my friends were all gathered around me making me things like egg custards and rice puddings, home made soups, cakes and visiting and wanting to take me out for trips etc. Then they did a biopsy and low and behold the cancer had gone ( according to them), as soon as I got the PBC diagnosis my friends heard the word cirrhosis and all, each and everyone of them headed for the hills never to be seen again, can I also just say that I don't look good i look like sh*t as i have lost over 7 stone and aged over 10 years in first 12 months, the one friend who stuck around for a little while even told i looked terrible, and I know it myself, i am now wrinkled and half bald and hurt from head to foot and itch, people I have known for years pass me and don't recognise me, so i am not happy either deep down julez.
I'm so sorry to hear that, my nightmare started 23 years ago on the 30th of March when I was in labour with my 4th child. It was supposed to be such a happy time, but the labour triggered a gall bladder attack, they ended up inducing me to get her out and wanted me to have my gall bladder removed, of course I said sorry I'm to busy I have 4 children and went home about 3 years later I was in hospital having it removed and the stones had travelled so far they had blocked my pancreas. I had an ERCP to look in there and remove the stones but that caused pancreatitis which would not stop reoccurring the surgeons have no idea how I am still alive with how sick I became. Then my lovely surgeon rang me at home one day I was gathered with my family outside just talking as my sister was over from Perth Australia a 4 hour flight from me. She rang to let me know I had Lymphoma and she had me booked in for surgery as with my pancreas so fragile I could not do the chemo or radiotherapy. She was crying on the phone, it had been a long haul for her also with me and she was so upset. I went to hospital and had them surgically removed from my stomach and lucky for me she was thorough and got them all and they (touch wood) have never returned that was 10 years ago. Well to cut a long story short, the pancreas was not recovering because they found I had PBC and it just lay dormant for 6 years I was in stage 1, but one day I just started getting sicker and turned yellow and put on 26kgs of fluid, I looked like a blimp. One of the surgeons I know walked straight past me trying to find me to let me know he would operate on me last, he took one look and said oh no you are first. I went from stage 1 to stage 4 in a matter of 3 weeks!
This was my planned day surgery, two and a half months later I was released from hospital after nearly losing my battle to stay alive, I remained on the couch for another 6 months unable to walk more than 10 feet without almost collapsing. People were fairly good at the start, but four years later I think they just think I've coped this long I will be fine. I have just hired a cleaner to come each week to just clean the bathrooms vacuum and wash the floors to save my long suffering husband from having to spend his one day off per week doing that. We can't really afford it but we also can't afford him to get sick either. He works tirelessly to make ends meet but with me not working and the cost of medical bills from nearly a quarter of a century of being sick, we had to sell our house to survive. That was a tough call, but at the end of the day, it's just a house! I am lucky to have a daughter that is a hairdresser and one that is a makeup artist and they keep me looking my best. My son just gets upset and gives me the biggest hugs and feels helpless as does my eldest daughter, she brings me gifts to make me special and visits from my Grand dog that I adore. Harry a cavoodle loves his nana too and comes straight to me even in a crowded room with a big cuddle and lick! She seems to know when I'm down and cheers me up with a photo message from Harry saying I love you nana! (I know it's a dog, but he doesn't give a crap what I look like or if the dinner isn't cooked)
My other friends I rarely see now and they don't contact me very often as I'm to hard for them! they feel so bad for me (what a cop out) but I have one special friend that always calls and on her day off will visit even if I'm bed ridden and lay on the bed with me. We helped her and did the same for her when her husband was dying of lung cancer, we'd grab some take away and sit on or around the bed and have a laugh and a joke for about two years so I know she will always know what it means to me. Don't feel bad about the way you look and that you may have aged just embrace the fact that we are still breathing and the people in our lives that are really important are still here. Life is to be lived and when I'm well enough I give it such a hit I'm bedridden for weeks. I have actually put on weight and rarely eat so that is annoying. I think a lot of it is fluid.
I agree. My mother had both cancer and PBC , along with a myriad of other diseases. She seemed to get more visitors and help when she had cancer than when she had the other ones. I don't have a diagnosis yet, but I think I will soon. I still work 40 hours a week, have volunteer commitments, an aging widowed father, a husband and an aging aunt that I try to take care of. I don't have the fatigue that some of you do, but there are days that I can't seem to mentally deal with anything. I am a Christian and feel horrible missing church, but when I work on a saturday and only get Sunday off, I almost can't make it up out of bed.
I haven't heard the same stigma of cirrhosis that others have either. But I do get the eye rolls from people when I talk about my diagnosis trail. I have been tested for so many things people think I'm a hypocondriac. I do have some health anxiety, leaping to conclusions, but now I don't talk about it anymore. Once I get the diagnosis, I will explain it.
Luckily I have disability coverage through work, but its limited. I know there will be a time when I find it difficult to keep up with work responsibilities.
Sorry to hear they are keeping you waiting which only adds to the anxiety. Do as much as you can do and don't feel bad about the things you can't manage. I haven't had a bad deal compared to other people but would like more awareness and compassion. I'm not lazy I just physically can't walk 100 metres some days. Some days I can cook up a storm others it's help yourself!
Hello Julez1961.
Well I don't wish I had cancer but at certain I did wish I had something that I knew was going to go a certain way as we all know with this PBC we never know, that is the frustrating bit.
I have worked in the charity sector of fund-raising (charity shops) in an unpaid capacity and also in a paid capacity as an Acting Manager and also Assistant Manager. I was diagnosed with PBC (Dec 2010) just after I finished from my paid position (I quit but not because I was still undergoing bloods, scan, etc due to itching). I returned to unpaid voluntary work for our local Hospice following finishing for a disability charity in a paid capacity. The Hospice does deal with nearly all cancer patients. I left after working for our Hospice on and off over the last 15yrs in the summer of last year. I decided I did not want to do it anymore, want the freetime I have with my husband. (I am approching 50 by the way.)
I get asked many times a week about giving money to various charities but I am currently not working myself. I do have a personal income from my first late husband's employer as rule changes meant when I remarried 5yrs ago I keep it for life now. However it doesn't translate to much per wk., more like 8 hours at the British National Minimum Wage (bonus is I no longer pay tax as I always had when working and receiving this pension too).
My husband works but he's not had a pay rise himself in 5yrs now and a few days ago, the whole factory were informed that there is no pay rise for this next tax year starting next month. Everything goes up and even the urso will cost more when I pick up a repeat prescription for it end April.
One of the reasons that I turn off with a lot of charities is the fact that the man at the top of it all is reaping a decent wage out of it all plus in most cases a car paid for by the charity. For me it is the fact that a lot of money raised for charities are not utilised strictly as intended.
Hi, no I don't really want cancer I just want the help and recognition the dreaded disease gets. Instead we are not understood or helped. I agree with the big charities they take the cream off the top. Just shaving fora purpose, I even shaved my hair of4 years ago for the Worlds Greatest Shave.
Im not going to say that this is everyones case. However i have pbc/aih overlap and i would never trade it with cancer. My father died of Cancer. I actually consider myself lucky. I am 19 and yes sometimes its hard but i'd say its alot easier than Cancer. I saw two of my family die from it, and personally im just having a walk in the park compared to what they been through. Yes people understand cancer better, and feel sorry for the suffers but i dont want people to feel sorry for me.....this is just what i think. Im not saying that what you asked is wrong, because you may have a worst case than me. Im just saying that my experience with pbc/aih however bad it is I'd never want Cancer and im looking forward for the future ^_^
I am sorry to hear about your father but I never said I want Cancer I have had 4 people close to me die from Cancer. What I said was people know what it is and grasp how it affects you and your life. I'm end stage just waiting for a call to say I have a liver for you and people still think I'm going to get better soon. I have a disease in my liver, how am I going to get better. I can honestly say that for the first 6 years after my diagnosis I was fine it was nothing then my life turned upside down and the past 4 years have been hard and are getting harder. I'm sorry you have this and you are so young hopefully it won't progress to this stage. Best wishes.
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