Glass half empty girl

[kandiepat]

Hi all, do any of you with PBC feel meloncholly, sad, grumpy even, pessimistic? I don't remember being this lack lustre all my life. In fact a glass of wine lifted my spirits but I don't drink now. I'm just wondering,as I get fed up with myself and feel sorry for my husband. It will be interesting to know if anyone else feels like me. Kandiepat

[Sona_akb]

Dear kandiepat I do feel so sad most of the time. Thinking about how much difficulties are waiting for me in future ...

I feel very unlucky. But there’s nothing to do with.

I just forget about everything and continue to my daily life. That’s it. No one know what will happen....

The biggest dream of mine is invention of a complete cure for my disease. Can it come true?

[gwillistexas]

I think many of us share your feelings but maybe just don’t say much about it. I feel that way often. Especially after weight loss, divorce and I was told by my GI’s NP on Thursday, that underweight people with pbc who also have muscle loss, die sooner than those who maintain their weight. What a bomb to drop on someone. So there’s an added concern. We as women, look into our future and plan. This whole PBC thing prevents some of us from doing that. I know life is uncertain but PBC makes it more so. Hang in there. Brighter days will come.

😊🌹🌞

[Hidden in reply to gwillistexas]

O my! Were you able to respond to his/her comment? I'd like to know the context in which it is (if it is) a fact and the supporting evidence. I'm so sorry you experienced that. The nocebo effect: it is reported that if the practitioner gives to the patient a positive interpretation of their condition, a gain is to be had by the patient. I can't see how on any level that was good information you were given. What is the plan to explore how you can absorb more nourishment from your already good diet?

[gwillistexas in reply to Hidden]

I’ve not been told that by my hep. This NP sees me in between my hep appts. She is liver smart but I’m not sure about data to back it up. She said muscle is very important to the liver. I’m doing everything I can to gain weight. She said continue with protein drinks. She sent 4 cases of Boost Max Protein (30 grams). Drink one between each meal. She said before we start blaming ocaliva for the weight loss, we are doing colonoscopy and endoscopy. She said I have to build muscle in arms and legs. I’m hoping someone can ask their hep about what she said. I don’t see my hep until December.

[Hidden in reply to gwillistexas]

Could you consult a nutritionist?

[gwillistexas in reply to Hidden]

It’s been in my mind

[Hidden in reply to gwillistexas]

Please do. I can't say how great is the difference between the "good diet" and the diet that suits me now. And how much better I feel on it. And how I've put on 7lb that I don't need. And how I have included supplements to support my bones and they seem to have restored memory! There's new evidence from research about the function of bones as an organ and not merely as the scaffold to our bodies. I think it's an important, relevant discovery to our experience with PBC.

[gwillistexas in reply to Hidden]

My best meal is dinner. I work and eating right is almost impossible. Although, they said eat whatever.

[Hidden in reply to gwillistexas]

In your position, I'd be messaging PCB Robert at PBCF. You always unfailingly give good replies to others - this may be the right time to get PBCF on your case. They can consult with the renowned PBC specialist Heps in a moment and advise you very swiftly what has been their opinion/advice. I had this positive response from them before. PBCF doesn't shut shop, they are a true life-line.

[gwillistexas in reply to Hidden]

Thank you so much😊. Someone told me that my NP should have not made the comment about “dying early “. Totally uncalled for. If that comment is made it should be from my hepatologist. Exactly what do I ask Robert?

[Hidden in reply to gwillistexas]

If I understood correctly, you may have expressed a concern that perhaps your weight loss could be due to oca. It is a long time to wait for an expert opinion on this, - December. A question I would ask is this. Would there be a procedure/protocol/test to rule out or in the possibilities in case the weight loss requires urgent intervention given your current zero-to-spare weight and the anxiety caused you by the NP? Don't worry tho', Robert and Collette are expert at getting the picture and they'll know what q's to ask far better than I! Just tell them how you feel and leave it with them.

[gwillistexas in reply to Hidden]

Thank you🦋

[Hidden in reply to gwillistexas]

my pleasure. I hope that you will be able to relax a bit as soon as you have moved on contacting Collette. x

[gwillistexas in reply to Hidden]

I hope so. She sent me into a whirlwind when she said that. Have a great day!🤗

[Hidden in reply to gwillistexas]

It is hard to remain steady in the face of careless, ignorant remarks.. (I'd be less forgiving if I didn't know how easily I can make them myself ) Go gently Gail. You are going to be fine x

[gwillistexas in reply to Hidden]

This is true. She has always been so uplifting and supportive. I’ve complained about my weight for long enough and I guess when she saw how I have lost, she felt a need to get serious. Scared the crap out of me is what she did.

[Hidden in reply to gwillistexas]

(saves on lactulose, if you want to look on the bright side..)

[gwillistexas in reply to Hidden]

Lactose? What’s the connection?😊

[gwillistexas in reply to gwillistexas]

Sorry...lactulose

[Hidden in reply to gwillistexas]

I guess you don't take it then! It gets the crap out of you, without the fright!!

[gwillistexas in reply to Hidden]

Lol! No I don’t take it. 😊

[boneytoys in reply to gwillistexas]

I was told I wouldn’t make old bones

Sometimes I feel it might be so but so far so good xx

[gwillistexas in reply to boneytoys]

Wouldn’t make old bones?

[boneytoys in reply to gwillistexas]

Live to old age ( I’m 69)

Diagnosed 11 years ago

[gwillistexas in reply to boneytoys]

I thought maybe that’s what you meant. Wasn’t sure. I’d say you’re doing well😊

[boneytoys in reply to gwillistexas]

So far so good

Lucky

[gwillistexas in reply to boneytoys]

Keep doing whatever you’re doing!😁

[zinchunter in reply to gwillistexas]

Sorry -whats a NP? We have so many abbreviations it is all rather confusing! And different language and concentration units across the Atlantic! William

[gwillistexas in reply to zinchunter]

I’m sorry 😊. Nurse Practitioner

[zinchunter in reply to gwillistexas]

Thanks. Silly me!

[gwillistexas in reply to zinchunter]

😄

[Candy12 in reply to gwillistexas]

I thought this may help, it’s an extract from another post, but has some useful information that you may find helpful. ( the original poster got this from a leaflet they were given )

The energy from the food you eat only lasts for 2 hours. If you have liver disease and have no energy stores, your body must find an alternative source of energy after this time. Fat tissue is hard to break down quickly, so instead your body will break down its own muscles for energy. If this continues, your muscles will get weaker and waste away.

It is important that you try and eat regular meals and snacks containing carbohydrate every 2-3 hours.

To prevent muscle being used for energy and to keep you strong, it is important to ‘re-fuel’ your body regularly. Eating meals and snacks containing starchy carbohydrate every 2-3 hours provides enough energy to stop your body breaking down its own muscles."

I know for me I have to eat every two hours or I run out of stamina. When I did still work I had a job where I was on the road visiting most of the time, so I would fill a box with all sorts of finger foods so I could eat while driving, I practically grazed all day just to keep going.

[gwillistexas in reply to Candy12]

G’morning. Thank you so much for sharing this with me. Fortunately, I’ve always had energy but then there’s the fast metabolism I’ve had all my life which forever has allowed me to maintain a healthy weight and not gain. . I agree that I probably need more carbs, although I’ve not really paid attention to my intake. I will certainly make a list today of snacks with carbs and start taking to work. I’ve been called a grazer because I always want to snack. With your helpful information, I will snack on things that will benefit me. Thank you again 😊

Gail 🌞🦋

[NFTom in reply to gwillistexas]

I lost 20+ lbs back when the disease started 5 or so years ago. I can't for the life of me gain it back. I have a great appetite, mostly healthy diet and get tons of exercise. I'm on Urso for 4 years now and my numbers are back to normal. I plan to bring this up with my GP in upcoming visit.

[gwillistexas in reply to NFTom]

G’morning. I too have lost 20+ in 2 years. I have a healthy appetite as well. I eat right but I also eat anything I want as instructed by my hep because my liver is fun normally. It’s a struggle to gain the weight back.

[Sona_akb in reply to gwillistexas]

It’s good that you’re appetite is enough, because my biggest problem is not having it

[gwillistexas in reply to Sona_akb]

Yes, i couldn’t ask for a better appetite. 😊

[gwillistexas in reply to Hidden]

I tried to do a little research. I have heard that with Cirrhosis, muscle waste doesn’t give a good outlook. And this is pretty much what I found in researching. I don’t have Cirrhosis so maybe my NP feels I need to get built back up in case I should reach that point. Nobody wants me to build up any more than I do. Still think ocaliva started it and I won’t back down😂

[gwillistexas in reply to gwillistexas]

And, a lot of people who take ocaliva take it with Urso andcsee no weight loss. I’m not familiar with anyone here who only takes ocaliva besides myself.

[mrspeffer2 in reply to gwillistexas]

Hi Gail...I really hate when under qualified practitioners senselessly run their mouths. It's as if they have no clue that it is going to haunt you. For that blow, I'm so sorry you had to hear that. I found a great article comparing some really high quality protein powders.

olympicmuscle.com/best-weig...

If I had to gain weight, I'd try the Naked Mass Weight Gain listed in the article.

Also saw some tasty recipes for making them yourself that were rather high in calories.

I'll send those along later.

[mrspeffer2 in reply to mrspeffer2]

Here are those recipes...they sound yummy! Worry not, this will get better.

smoothiegains.com/2000-calo...

[gwillistexas in reply to mrspeffer2]

Sounds good👍. I saved to my email. I appreciate your help as always 😊

[mrspeffer2 in reply to gwillistexas]

MY PLEASURE

[gwillistexas in reply to mrspeffer2]

Have a wonderful Sunday!😊🦋🌞

[Sona_akb in reply to gwillistexas]

Dear gwillistexas come on!!! You will gain weight again if you really insist on. I swear it won’t be difficult. Make calorie rich smoothies and make at least 2-3 snacks a day. It will work just needs your patience.

[gwillistexas in reply to Sona_akb]

Thank you😊

[Sona_akb in reply to gwillistexas]

Do you know if we can use protein powder or not? I haven’t try it yet

[gwillistexas in reply to Sona_akb]

My hep doesn’t recommend protein powder.

[Sona_akb in reply to gwillistexas]

Look you can mix milk banana avacado date peanut butter all together and drink twice a day

[gwillistexas in reply to Sona_akb]

I might do all except avacodo. I love them but not in that mixture 😅

[Sona_akb in reply to gwillistexas]

Have you ever tried? Avacado actually doesn’t add an taste to the smoothies just makes it creamy, plus avacado is very liver friendly and recommended for liver health

[gwillistexas in reply to Sona_akb]

Yes I eat avocados because of the benefit to the liver, plus I love them. You’re right, not much taste to them. 😊

[Hidden]

I do too> I believe it is more to do with adverse chemicals in our brain brought about by the challenge to our liver. I can feel down with no cause and I can feel so down that I'm struggling when stuff hits me emotionally. And if a number of 'stuff' hits me in succession I have to look for an anchor, a way to survive. It is an ongoing battle for survival but I'm not in doubt that I want to survive. It is good that you posted this. We don't often mention it but better that we do. Thank you for sharing.

[kandiepat]

thankyou for your replies, I can only add that, we all want to survive, but I just wish I could feel happy - since I was diagnosed Ive been consumed in my own thoughts and its as if Im in another dimension half the time!. Maybe because Im always tired I dont Know. Big Hug to you all Kandiepat

[EileenUSA in reply to kandiepat]

Hi,

You mention lack of sleep.. that’s been a real problem for me which seems crazy because when I’m fatigued I would think I would sleep more deeply.. BUT wanted to say you are not alone. When I’m not getting quality sleep I can really get in a bad funk.. And being tired I find it harder to get to the things I enjoy... I start to feel quite flat.. Hugs to you.

[Hidden]

kandiepat - I used to believe I was in control of my life, and now I understand that I never ever was. It's odd how this makes me feel stronger than ever in my life and when life feels good, it is better than ever it was. x

[kandiepat in reply to Hidden]

Lol, I will have to work that out! You sound positive though and thank you for your comments Kandiepat

[Hidden in reply to kandiepat]

i made you laugh! see! that's good for you? I must say, I did sound like the French footballer. Do you remember his "seagull following the trawler" one?! No one got it.

[kandiepat in reply to Hidden]

Yes you did 😘

[Hidden]

Eric Cantona, just remembered!

[ninjagirlwebb]

I think when you are diagnosed with a rare condition like pbc, it is perfectly normal to feel sad & mopey.

On the bright side, while no cure at least there are meds to slow progression. It is not life threatening.

No one wishes this kind of stuff on themselves. But it is what it is so we have to work with it & embrace our life the best we can, make the most of it, take control by taking care of ourselves & making sure our medical providers are doing their best for us.

So while this is forced upon us, we can take control.

[Candy12]

Being diagnosed with a chronic disease does seem to cause a certain sadness like a bereavement, a loss of what you thought your life would be like.

It takes a while to get used to this loss. I seemed to lose my get up and go, it was like a light went out and never came back on.

A positive mental attitude helps as does exercise, but sometimes the sadness just comes back for a while, it will pass though, just ride the wave and look forward not back.

[EileenUSA in reply to Candy12]

Really appreciate this sharing tonight. Thank you

[liver-bird]

Hi Kandiepat,

I find that keeping spirits up is a struggle. If we are not experiencing certain symptoms it is upsetting to know that others are and this may be what is in store.

I practise daily meditation and gratitude to lift me and I avoid the news and violent negative tv programmes. It feels like trying to stay afloat. I find it is possible but not easy and requires constant work. This is not imagination but real and it's hard. Big hug to you all. Warriors we are and must support each other. With love and best wishes. Diane

[EileenUSA in reply to liver-bird]

Thank you for sharing this. Resonates with me.

[gwillistexas]

OMG! Girl I can’t afford that stuff🥴😅. Yes the more I think about her comment the more it pisses me off. Her comment may hold validity but I don’t like scare tactics. You remember the first hepatologist I saw from Dallas? I guess I’m sneaking behind the scenes but I’m seeing him again the end of October. I didn’t like his Vit d mega dose but he did pay attention to weight loss. Guess I should have stayed with him.

[Hidden in reply to gwillistexas]

It is possible that you need re-fuelling in under two hours - we metabolise at very different rates. Mine must be v slow...

[gwillistexas in reply to Hidden]

😊

[shadowme2]

So have an occasional glass of wine. Not gonna kill us. Take on the sunset, relax.

[kandiepat in reply to shadowme2]

Shadowme2, what a good idea, I will do that now!