diagnosed 17th sept '12

My world has just crashed been in la la land since monday really and my sister law found this website and posted it on my fb page so just had look around and has now just caught and woke me up to whats ahead. Like some of the other blogs children ware you out at best of times but everything was falling apart and came to a head three months ago after collapsing at work for third time and brain dysfunction. I had put it down to my periods which most months can be very painful. But as this was third time I went to gp completely exhausted and she did a full mot of blood tests and four further ones due to liver function abnormality and the lab carried out a further test and requested referral to specialist and hence now all in the last three months. However feel like i falling apart i have continual headache body aching so been referred to rumatology for investigation of fibro-myalgia as not all related to the pbc but will say my gp has been brilliant and the liver consultant was pretty cool to but do have a million questions for him in two months. This website has lots of information so positive start tomorrow starting with supermarket shop after a gentle swim which been doing for little while as the gym and zumba wore me out now i know why of course but do miss zumba as its so funny i have two left feet. My children in for big shock no longer will i be clearing up after them and they will be inheriting some jobs all five of them age range 3 to 20 one daughter, oh and hubby can pick his own dirty socks up from now on, he otherwise well trained including putting down the toilet seat. I have no idea if this makes any sense as the tears keep rolling but going to be positive and fit it in around ME! Just glad my gp could see i was not right and been doing all she can to get some answers. My head is like a hurricane at the moment as have appointments coming out my ears and to top it I hate dentists (don't care how nice they are) and due to persistent toothache had to have tooth out he going to prescribe sedative next time (no more teeth out if can help it or canal jobs not had one, plucked for extraction) that was last week at the moment have free week next week lucky me but time to adjust and talk and organise.

So thankful to my sister in law finding you was big help and reading others blogs here will use you a lot i'm sure tears drying a little.

13 Replies

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  • I'm so sorry that you are finding this all so hard. I can relate to most of what you have written because i was only diagnosed on 5th September. I had a year of being on the verge of collapse before I was diagnosed (full time job, 2 kids, single parent etc etc) and even now, I have to sleep for a couple of hours every day. My head is still like a washing machine on spin!

    Can I suggest that you go over to the PBC Foundation and sign up. You could also email them and ask about getting a copy of the PBC compendium. It has been really reassuring for me because it explains so much in plain English.

    I know why you have found it all so shocking and scary but if you keep reading the posts here and look at the information on the PBC website, you'll get a lot of reassurance and support.

    Good luck and look after yourself. x

  • Hi giggles, sorry you are in this state at the moment but it will get better, I was in a shocking state at first, only getting out of bed for hospital, GP and dentists appointments, and like you there were many and they all got on top of me as they were coming thick and fast untill one day I stood on my own two feet and cancelled a load of them ( to many to face ) I said i would go one at a time when I was ready ( one day I had three appointments, well thats not on ) after that I got better with time and now don't sit here moping about PBC like I was, apart from itching and pain in joints of course but that I can cope with a little better now too, I just have a dam good scratch and shout out in pain when my joints hurt, the house is like a tip to what it used to be and I do go to the dentist as he seems to know more about PBC and talks to me about it, well more than the medical proffesion do, he is polish and seemed to know what it was straight away, maybe it is more rife there, Take care and loads of hugs..........,,,,,,,,,,I must be in a good mood today( i would put a smily here is I could find any!!

  • Hi Giggles, I really feel for you and know exactly what you are going through. I have found this site and the people so supportive and helpful. You will have good days and bad days but at the moment you have had a lot to take in so your emotions are going to be all over the place, it does get better :-) big hugs (i can do a smiley face lol but not sure on symbols for hugs, if there is one) xxx

  • Hi Giggles,like you found the imformation that i had liver diesease really hard to deal with(may 12).I have to visit the hospital every 6-8 weeks but hpoing after my next scam it will be longer.I get really tired to and this has affected my job as well as my home life. Had i know but thinking positive and changing things does help.Take care.:)

  • I am overwhelmed thank you all for lovely comments sorry tears again its all a bit of a minefield going to do tape recording of my voice i think for my children they the hardest work at the mo either that or hearing aids for them. I struggling with tiredness and wondering how i going to cope with work let alone day to day stuff trying not to think to much as well but thank you is nice to see support I am here for you all to take care and hugs back (cant find smiley faces either) xxx

  • Hi Giggles, don't panic. I was diagnosed 9 years ago. I'm still working full time and doing fine. URSO medication really does help, so get your specialist to prescribe it. That may drastically improve your liver function which in turn will help ease some of your symptoms. It's always frightening when you find out you have an incurable medical condition but lots of people manage their PBC and live normal lives. Pass on the housework to the rest of the family and learn to pace yourself, it will really help. Rest when you can and ask for help from family and friends when you need it. Most important thing is to keep positive, set aside some "me" time every week and enjoy yourself. Life really does go on after PBC!

  • Eh!!! You shed those tears its ok to cry hun its all a big shock and i was like that about 15 yrs ago when i was diagnosed,, it seems like your whole world has tumbled down around you,,, its such a lot to take in and i also have fibro-myalgia as well as atriel fribulation, reynards and limited sytemic sclerdoma,,, talk about rattle with the pills lol....

    You will deffinatly get through this patch and learn to live with it,, if you do a lot one day then the nxt you rest,, dont overdo it,, rest as much as you can in the afternoon everyday,, put your feet up and have a sleep or watch a good movie,,, am sure your family will pull together and do their part of the chores for you... take care Bev x

  • I received the dx in Feb of this year. I was totally shocked and had a very brief bout of feeling down, but I stubbornly refuse to wallow in fear or pity. I believe it is so important to take a proactive approach to healing and dealing. By this I mean, changing your diet , moderate exercise, staying calm and relaxed. I have lost 14lbs eating a low fat, low salt, balanced lower calorie diet, I walk, I do a guided healing meditation every day. I intend to live life with the expectation of good health and increased vitality. My last blood test the Alt's were just a bit above norm, but the antibodies were still too high. I had blood work done today and am looking forward to better numbers. I have been on Urso, Milk Thistle, and a multi-vitamin and am seeing the positive results of this regimen. The secret for me is to listen to my body. If it is tired, then I rest. If it is hurting, then I do what is necessary to ease the pain. If it feels like having fun, I go out and do something fun. Enjoy your life each day. I believe that we can affect change by living as if the change, in this case better health, has already been achieved. Good luck and remember you have found a family here that understands more than anyone else can what you are experiencing. Yes, PBC does not have a cure at this time, but that doesn't mean you can't live a long, happy and peaceful life. I have heard of women who have had it for over 20 years. btw, I am 66 and still plan on being here for my 100th. Y'all are invited to the party. :) Hugs, Judi

  • To make a smiley face strike the colon key : and then the bracket ) make certain there is a space before and after. :)

  • Hi giggles12

    Welcome to the club!!! Been there got the T.shirt...Its really early days and you will go through a rollercoaster of emotions.... but chin up it will get better. Give yourself time to come to terms with it....You will eventually get back to your Zumba....sit out a couple in between during the class and you'll be fine, you just need to make some adjustments and pace yourself, this goes for everything else too....job, housework etc etc..If you can't get it all done today theres always tomorrow..Don't beat yourself up about it and don't write yourself off!!

    I was diagnosed in Jan 2011...I was absolutely terrified ...I too have children...3 boys now 25,23,13. I was first told I had PBC early Dec 2010, the gastro registrar who broke the news was not very tactful, told me I needed scans and a biopsy to confirm extent of damage and basically could have 3 years to live.... I was totally devistated and went in a downward spiral of depression...could only think about not seeing my youngest grow up. The more I tried to look up on the internet the worse I felt. When I went back to the Consultant in the January, I took my sister along with me to act as my ears but because I was in such a state she ended up having to speak for me too. The Consultant was brilliant and put my mind at rest. He explained the scans showed that the damage was contained within the liver and the biopsy confirmed the PBC and showed I had scarring, inflammation and fatty liver. He prescribed URSO which would help prevent and slow down any further damage. He explained that the PBC may never develop into full blown cirrhosis and if it did there was a possibility of liver transplant.... It did not mean I had a death sentence.

    I have good days, I have bad days and I would be fibbing if I said I came to terms with it straight away..because I didn't. To this day I have only told a handful of people I have PBC because as soon as people hear the word cirrhosis..out of ignorance they automatically think you have a drink problem..I don't....I got really fed up having to justify myself..so now I only mention it on a need to know basis. I buried my head in the sand for a long time...but since finding this site in May this year.. Its been an absolute god send..I now know I am not alone... feel far more positive about life...have learned so much and can now open up a lot more...a problem shared is a problem halved. So what if you fill a pool with your tears...you've got every right too....you've had a really big shock...everyone on this site will probably have filled an ocean .....but its justified.

    I read recently of a lady who was diagnosed with PBC at 51 and she's in her 80's now..so don't give up....we've got a lot of living to do yet... Zumba here we come...or maybe Yoga!!

    Lots of hugs and best wishes

  • Thankyou all for support has been a godsend really has got me through the first week and the tears are drying up slowly and my fridge has never looked so colorful. I have quite an extended family living around me and word has spread so when bump into i get a little teary but do feel a little stronger knowing its not just me and there are you and reading about it puts it into perspective. So really thankyou all i hope i can be here for you and anyone else who comes along love hugs and good wishes xxx

  • Hi giggles, I was diagnosed at a stage 3 about 17yrs ago. I was single mom of six, ages 11-19, had 2 jobs and thought my whole world was over and I was going to die!, and I am a crybaby anyway, good, bad, funny, all of it. After a couple weeks and talks w/my doctor I got stronger. I started w/Actigall and then Urso. I also have taken milkthistle for 15 years. The itching made me crazy but he gave me a rx for that too. Last year I had to go to the hospital and have a transfusion, my PBC has moved to end stage w/cirrhosis. I was very scared because I sort of forgot about the PBC over the years. Again I cried and thought my life was really over. I am still here and although there are more things to watch for and go in for tests more often, I plan on being here for a long time:) Just one day at a time is all any of us can do. I know you will make it because of all those children, and grandkids to come. You will find the inner strength you need and you will be fine. I hope you have a wonderful gastrointerologist who is as patient and kind as mine. You will be in my thoughts:) Take care.

  • thank you for your thoughts and i to intend to live each day (when i stop crying) as yet i dont know what stage i am at and that is playing on my mind greatly will know in november. you take care to and really thankyou, :)

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