Not such a great weekend

[Shulsey]

I feel like Im in the movie Invasion of the Body Snatchers!!! It's like someone else is speaking for me these past couple of days. Everything going on inside of me I have zero control over. Then there's the issue of things flying out of my mouth that truly isn't me. Am I going crazy also😳😕🤔😞. This is too much to take sometimes. Sry everyone, needed to let some things out, but there's no one here to understand.

[Jtxx]

It's good to let off steam in a safe environment. Hope the next few days are better for you . Xx

[Hidden]

I had a similar day yesterday. I have the wrong family my friend. I'm not going to get trough this. I have a dr apt on Wednesday. My Dr always ordered my prednisone in 20 mg pills. This time he ordered it in 10 mgs. He's suppose to lower my dose but I will not allow him to drop me 5 mgs with the people that I have to live with. They aren't nice

[Shulsey in reply to Hidden]

You know your body, what you can take & what you cannot. I just simply couldn't handle things this weekend. So mad at how life & people can be so unfair!😖😩. I guess I just bottle things up until I explode. I was never that way before. Plus, I have a blended family, it certainly does not make things any easier.

[Hidden in reply to Shulsey]

I am the same way. I let people usually my husband or children push me to a corner. I'm terrified for Wednesday. There's no reason for my Dr to call my new prescription of prednisone in from 20mgs to 10 mgs. He can't drop me to 15 mgs to fast. I'm taking 20 now and last month I was to get dropped to 15. Knowing what I know now. Dropping me to 15 will result in a break down

[DonnaBoll Administrator in reply to Hidden]

prednisone can do so many crazy things to us physically as well as mentally... have an honest conversation with the doctor about lowering the dose. To my knowledge it has to be slowly lowered.

[DonnaBoll Administrator in reply to Hidden]

If you are open to suggestions right now. do you have the PBC app on your phone? This has so much information about self care --how to manage stress. There is absolutely no doubt it takes its toll on us mentally as well as physically. Stress can also affect your lab values. Are you aware of the Choose Me Tuesdays that The PBC Foundations hold? I will post some info about them.

[4pjx__ in reply to Hidden]

But Jenny, maybe you will feel better when he lowers your prednisone? You might be able to deal with your family issues better knowing your health is improving. Just a thought. Hugs

[Hidden in reply to 4pjx__]

I'm a post hog. I'm sorry shulsey.

[Shulsey in reply to Hidden]

It's all good Jenny😁, today is another day

[Hidden in reply to Shulsey]

SOS

[EileenUSA]

I have read many of your posts and I don't know how you maintain the positive attitude you show. It's inspiring but hey- you also need to vent and to yell as needed! You are dealing with a whole lot. I hope the mental stuff improves as that can be so disconcerting. I am relatively new here but am always grateful to see the peer support that happens because other folks truly just can't understand.. keep your head up.

[Shulsey in reply to EileenUSA]

I have my moments. Those usually happen right before or right after my visits to Indianapolis to see my heptologist. But this was out of nowhere. Tired of hearing the kids complain, it usually involves my daughter who's ADHD. Always seems that everyone blames her. Makes me so mad. Tired of rules one day & they're different the next. I voiced my opinion to where people miles down our road probably heard me😳 oops

[EileenUSA in reply to Shulsey]

Hope the folks down the road are taking notes.. 😁

[Shulsey in reply to EileenUSA]

🤣🤣🤣, I needed that. Thank you

[LindaVillanova in reply to Shulsey]

Lol I've been swearing like a truck driver , it just flies out and I don't care! So bad. I have a 14 yr old daughter who tells me I'm straight savage. She had to explain that to me. Anyway it happens....we're human with so much 'stuff'. Better day tomorrow!

[Shulsey in reply to LindaVillanova]

Straight Savage😂😂😂 I'll be sure to remember that one!!!/❤️ it haha

[Sachin1234 in reply to Shulsey]

How are you

[Shulsey in reply to Sachin1234]

Im better today, thank you for checking with me. I just wish my fiance would stop forgetting how sick I truly am & give me the support I so desperately need from him. I was told this morning that I act so helpless sometimes. This was over his tool bag being in the front seat of the car which weighs a ton. I cannot move it because I fear of having another varicies bleed. I told him I didn't really feel up to puking blood again so I must wait for him to get home from work to move it from the driver's seat. It so aggravating. But, Im over it, or simply getting used to being treated like Im nuts. Isn't that just awful.

[DonnaBoll Administrator in reply to Shulsey]

I can only imagine how hurtful that must be from someone who is supposed to be there for you. This has always been a struggle for so many whose family members and 'friends' don't 'get it'. We are always here for you. All I can say is just remember that how you feel is very real. Is he open to even reading about PBC?

[DonnaBoll Administrator in reply to LindaVillanova]

I replied to someone else who was having episodes of weird behavior. So many 'weird' things happen with this awful disease, don't they?! I now know what 'straight savage' means too. One suggestion if these spontaneous episodes continue is to ask your doctor to just check your ammonia levels with the next set of labs you have done. Any elevation can cause some issues. Just a thought....

[Sachin1234]

Sorry!

[cfsummerford72]

I had to be put on prozac in order to get some type of sanity. We all have our days were we just can't deal with other's shit. I try to avoid it you cant always. It may be the anger of feeling this is a never ending bad roller coasters ride. Ive always been blunt but moreso now that i cant let people waste my time or make me feel less of a person. I hope you know you never need to apologize for sharing what you are feeling that why we are here.

Connie

[EileenUSA in reply to cfsummerford72]

Well said Connie!

[DonnaBoll Administrator in reply to cfsummerford72]

Thank you for sharing... it is a good thing to be direct and have only those who are a real asset to our lives around us. Boundaries are often the solution. I'm glad you reached out for some help. I took - and still do - take antidepressants. I am also a strong advocate for therapy. It changed my life. Nothing feels better than telling 'secrets' or deep feelings and no one judges you. PBC can be that roller coaster ride. We all so understand that feeling. I always try to remind myself - and all of you - to control what you can control. Let the rest go..... that is a work in progress for sure.

[Pamela4475]

So sorry you had a bad weekend Shulsey....but after all that I bet it felt good to get it out...we are here for you

[LorraineLouise]

I'm so sorry you had a bad weekend. I sometimes feel sorry for myself because I am all alone. But other times,if I'm having a bad day, I can't imagine having anyone around me with the way I'm feeling.

So I get it!

Wishing you better days!!!

[DonnaBoll Administrator in reply to LorraineLouise]

just remember we are always here if you need to 'chat' or 'vent'. Sometimes we really do want to be alone, don't we? I really like my alone time too.. good mood or bad.

[DonnaBoll Administrator]

I can imagine how scary and frustrating this must be for you. A very common effect PBC can have on people is called Brain Fog. It is a very real thing. You do feel like you are going crazy sometimes. Some people are forgetful, can't think of a work, forget what they were going to do (more than all do), or just feel 'fuzzy'. Talk to your hepatologist about this. I know in the US some patients are helped by taking Lactulose. Have an honest conversation with your doctor. I will try to post some info about this here.