Too much in one day

[Shulsey]

I won a couple tickets to Holiday World & Splashing Safari off a radio station a few weeks back & decide to take my 8 yr old daughter on Tuesday. Im thinking I done entirely too much because I've been down ever since that night. So sore on top of already hurting, plus now I have fever off & on. I can hardly move. It's just depressing that I cannot enjoy a day out with my kid without having some sort of consequence 😩😤. On a good note, my little miss had a great day & the smiles we shared that day is worth the pain I feel now. I needed to share my frustration & thanks to all these lovely people on here I have folks who "get it!!!" All I get at home most of the time is a eye roll or a head shake in disbelief.

[Ktltel]

Shulsey,

Awe, you poor thing. Why don't others get it???? It's so frustrating isn't it? I feel for you. My husband seems to understand, but there are still times he doesn't. It's back and forth with him. I think he misses the old me. Well, so do I. 😔😧

It's my friends that don't get it. I look the same, well, except for these new "puffy bags" under my eyes that I hate. I've never had them before and they appeared a few months ago. But even with those, they make me look tired and worn out.... and many times "I AM" tired and worn out. I can't do what I used too. They don't understand why I turn down get-togethers or going out to dinner after a busy day. I just don't have it. No desire or energy. Plus I can't just eat or drink any old thing I want anymore.

I know it's got to be much harder when you have children. I'm sorry 😢. It nice you pushed yourself for her sake, but paying the price is no fun. Take care of yourself. ❤

My sister is visiting me for 3 weeks. She gets here next Thursday. For the last month I've been cleaning and just doing things I've let go because of lack of energy. It's not only my PBC but my RA too. It's hot and humid here and even with my Sulfasalazine (RA med), I hurt!! I bought some flowers to put in my containers (6)...a job I usually enjoy early in May. I just couldn't do it. Too much pain and zero energy.

Well, I forced myself to drive the 30 min. into town day before yesterday, bought the flowers, and the next day my husband helped me put them in a couple of hanging pots and other large (patio deck) containers. I was literally wiped out!! Not to mention after I showered and sat down for about an hour I could hardly move. My wrists and hands hurt so bad. Tonight it's also starting in my right knee!! Ugh!!

I'm not the same. I miss my old self and that's hard enough to deal with some days. And you are still younger and have children at home too. I understand how you feel. Try to pamper yourself a bit. We all need too sometimes. Physically and emotionally.

Stella

Dx PBC 10/16

Dx RA 4/17

[Hidden in reply to Ktltel]

I have 2 purple eyes and sunk in and a huge face and head. I gained 20 pounds. I told my husband and daughter that if my Dr raises my azathioprine tomorrow that I'm going to start screaming and crying right in his office. Bob wrote him a list of my questions and he said no that he's not raising it. He said he's lowering my prednisone to 15 mgs if my blood comes back ok. So far it's been good. I shouldn't complain. You all are going through so much more than me. I'm selfish and need to get off the pitty potty.

[Ktltel in reply to Hidden]

No Jenny,

You have every right to have a pitty party.... We are all at different levels... We are all experiencing a loss of our old selves and trying to adjust to this new normal. ❤ Some days are better than others. I guess I'm just not adjusting to the new normal yet. But, I have too. My body is forcing me too.

Stella

[Shulsey in reply to Ktltel]

Thank you for your input Stella. We do need our spirits lifted from time to time💖

[Hidden]

Hi shulsey, is yur treatment plan just Urso? My memory is foggy these days. My Dr won't test my blood for H.E he said that I'm even close to that. I have a 8 am apt tomorrow morning for a bunch of blood work. Then at 1, I have my apt with my liver doctor. He seems to be indicating that all my simptoms are from medication and not my 2 liver diseases. If you have a tempature that really should be looked at. I know that you're taking care of yourself but being a mother hen please don't get dehydrated. but how high is yur tempature

[Shulsey in reply to Hidden]

I take Urso & started Ocaliva on the 9th. It could be your medication, you'll find out with your appointments. Im sure the liver issues don't help anything as well. My temp had been running between 99-101° My normal body temp is usually 97. It's lower than most.

[Hidden in reply to Shulsey]

101 temperature is high for an adult. Being in the sun too. Women can take a lot of pain that's for sure. I'm already taking azathioprine and prednisone for aih and Urso for pbc. I don't know that I could take another pill. I'm supposed to be taking vitamin D but I just can't swallow anymore pills. This really stinks for all of us

[Shulsey in reply to Hidden]

My list of meds, Urso, Lasix, Pentasa, Buspirone, Ocaliva, Levothyroxin, Xifaxan, & just started oxycodone as needed for pain. After a long battle with all my Drs they finally agreed to help me with this pain. Im already at cirrhosis stage, it's not like I can make my liver better😒

[Hidden in reply to Shulsey]

Did yur doctor say anything about transplant for you

[Shulsey in reply to Hidden]

I'll be on a list anywhere from 5-10 yrs according to my heptologist.

[Pamela4475]

I know the feeling... this morning I went to an outside vendor market and was having so much fun then boom.... thought I might pass out. Out for2 hours walking around and I will spend the afternoon on the couch and dizzy 😵

[Shulsey in reply to Pamela4475]

I had another interesting day yesterday. My 8 yr old daughter is on a All Stars softball team & they had tournaments in Henderson KY. It was extremely hot & humid. We were out in that weather from 8am to almost 7:00 in the evening. It was extremely to much for those little girls & myself. It's our first experience with a travel team. Praying all the scheduled tournaments aren't this way. The girls played 5 games. Luckily there were people around who knows of my condition & kept a check on me frequently.