PBC Foundation
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Hello

I just wanted to drop in to say that Im still here & kickin. I have started to put weight on after being diagnosed in 2012, which is actually a good thing. I was way too thin & looked ill. Possibly because I am ill. But, I am still in this funk that I cannot seem to get out of. I need to have my bloodwork ran in a bad way but can't seem to get myself to the lab. I should have them ran every month but haven't been since September. That's awful, I know. I'll get there in the next week. Does any one else seem to get so tired of having to see multiple doctors, along with multiple tests ran, that we just want to try to ignore what's really going on for awhile. I truly am having such a hard time dealing with this disease & everything that comes along with it. Im so tired off it all I can't see straight & do what I know I need to do.

As I always say

Stay Strong❣️

(Im truly having a hard time with staying strong at the moment)

Shannon

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Awe Shannon (hugs hugs hugs) ,

It's incredibly difficult I'm sure. Please try to make yourself take care of the necessary things, labs and eating right etc. When the time comes for your new liver, you don't want to be further compromised in any way. I know that's easier said than done.

I can't imagine what your going through. And all of this AND life and family to care for too. It must feel so overwhelming for sure. ❤

I pray you can find that strength, I know you have it. Many times it doesn't come from us at all, but from God and at the right time. I know you are a woman of faith. That's why I know you understand that.

None of us have seen each other face to face but know we do care so much about you. ❤❤Please get your labs done and keep us posted. I know it's a hassle and there's anxiety. But there is hope... 🙏

I'm so glad you posted. You're entitled to get exasperated with this stinkin disease!! Maybe there is something they can do with how your feeling right now...let them know everything that's going on. Please know that prayers go out to God in your behalf often.

Love and hugs

Stella ❤

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Hey there Shannon, glad you posted, good news that you putting on weight...according to my doctor it's not good news when I put on weight!. However, I do know what you mean when you say it's so tiring to deal with this doctor & that test, etc, etc. but please get blood work done pronto-- maybe a clue there why you feeling down .......vitamin levels OK? ammonia level in normal range? Once it's done & whilst waiting for the results, nothing wrong with doing a Scarlett O'Hara--- just refuse to think about it 'til tomorrow . I didn't handle the interminable questions & forms involved with the doctor visits as well as I could've in the past -- used to make up stories what relatives had died from (stuff like grandfather last seen on Mt Everest, uncle trampled by wildebeest stampede, etc) & wrote it on the forms just to see if anyone read past my name & birthdate , no one ever asked about these 'interesting' events, but I always felt better. Sometimes would look in old Gideon Bible, the part where it would say 'when you are feeling sad, sick, etc' & would tell you what Bible verse to read for help. Maybe, & I do hate to say it sweetie, call your doctor & tell him you feeling very low, maybe it will help. Sending you very best wishes to feel better.

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Hi there

Keep going I know it's hard and you have been through the mill lately. There are times when you think I can't do this anymore. I've got a disibility assessment tomorrow and feel like telling them just leave me alone. So Shannon don't give up you have done so well so far. Keep strong and best wishes 🙏

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Hi Shannon. I really wish that I had comforting words to help pull you out. Just know that we are here for you. Can you call a family member or friend to pull you out of the house for the dr visits and blood work. My husband literally drove me to visits straight from the couch or bed. It is what it is. Someone has to help you. If you would like for me or any one in this group to help you explain to your family that it has to be done to get you well please let us know. We all love you and need you well.

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So sorry you are dealing with all of this. Maybe it might help to just talk about your feelings with someone who supports you to bolster your strength.

If you don't want to do that. You can always write in a journal. I write in a journal & that helps me because I am not keeping everything inside.

Also try to find at least 3 things you are grateful for every day. It will make you feel better.

Hugs...

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I️ am so sorry you are not feeling good did the drs tell you what stage your PBC is at , stay strong sending you prayers and love

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Im stage 4, F4 cirrhosis, & grade 2 varicies. I've not worked in close to a year due to the complications I've dealt with. Currently fighting a disability claim which I started back in April. Im only 43 yrs old & that alone will make my getting this disability difficult. I've always been a independent woman. Raised my eldest daughter (19) basiclly on my own. 10 years after I had her, I had a bigger surprise, my youngest daughter (9) with ADHD & adjustment disorder. The difficult thing for me is not being able to work. It's so much to take in. The feeling of not being able to keep up & do what was needed to care for my family is a struggle that seems to keep pushing me down. I'll bounce back, eventually.

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Hi Shulsey

Sorry to read that you are struggling at the moment. You are a strong lady and you will get there I am sure. Lots of support and positive waves being sent to you over the ether from the other side of the "pond" :-)

best wishes

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hi you sound like the stage i got to cpl yrs back i was seeing 4diff consultants tests and blood test were taking every day up or( felt like it) stopled taking my liver meds as i just i suppose felt rebellious but then once all the test results were in everything seemed to calm down i realised i was nt doing myself no favours without liver meds so i went back on them sand yes i had a few things going on healthwise but you have to deal with what you been dealt with is my motto ss such i have gone thru the phase where i was worried people thinking im hypochrondriac with all the drs visits but you have to get your head in right space and face these body torments and acceptance was the hardest thing in my book i had to retire early along with that came feeling old( 62) and useless but u get used to that please go get your bloods done why not ask if u need to go every mth as u say u have missed the last cpl but either way its fight or flight and u need to fight good luck hope all goes well xx

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Shulsey. Just hang in there. I also do not see the point in having to go for bloods so often..

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((Hugs)) Shannon - I echo above advice. Hang in there, deep breath and git er done:) You can do it. xoxo

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Hi Shannon, you already know the importance of staying strong and it sounds like you have reached the stage where this is more important than ever. Hang in there girl, the darkest hour is before the dawn. We are all rooting for you and lots of prayers are for you. Keep posting so we know how you are. Big hug from Diane 😃

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Hi Shannon! Great to hear from you but truly sorry for your malaise. Been there. It’s especially hard during the holidays. Is there family close by to help? I sure understand about seeing the different doctors and the frustration knowing that they really can only offer bandaids. I was so exhausted and then someone decided to check my TSH (thyroid). I’ve been on synthroid for years to boost my thyroid so imagine my surprise when blood work showed my level at 31.5 — it should be .3-5. After 3 months on the increased dosage I feel like the energizer bunny! I know you know He’s got this. Be blessed.

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Yes, I have family all around. But it always seems they have their own problems. Ya know? I too am on synthroid, have been since my twenties. Thank you all for your love & uplifting words. Much needed these days

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Hi Shannon

Good to read tou again. I haven't been on in a while. Same here, so tired of all of it. Too many appts, or tests, mostly noone takes you serious about how tired you are or that you just don't feel good or the pain. My recent problem again... my belly swelled. I wwnt to the ER this time. All tests were fine, but thw nurses and doctor said it makes no sense. I am getting so fed up, depressed and annoyed. So I totally understand you.

Good to hear about you gaining some weight.

Keep us posted. I will come on more often. At least on here everyone understands each other.

Bless you

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