Anxious and confused

[HeadMinion]

I already has PTSD, Post Concussion Syndrome from 2 Traumatic Brain injuries with cognitive and executive deficits, I also have ADHD. My anxiety already never takes a day off, adding in PBC has sent my anxiety off the charts even more. Ive given up hope that i will ever live a normal life again.

[Hidden]

I’m sorry. Is there some sort of hobby group that you can join to help you calm your nerves

[HeadMinion in reply to Hidden]

Thank You for replying to my post. I was taking Cardio Boxing classes 3 times a week. With all of my current weekly appointments: Mental Health Therapist, Behavioral Counselor, Medication Management and Pain Management doctors as well as a Job Coach, there is not much time to fit anything else into the day. As a stress reliever, I have a 60 gallon water aquarium that have 40 different species of fish. I thought about applying for a service or emotional support dog but I have enough problems taking care of myself let alone adding in the care of a dog.

[Hidden in reply to HeadMinion]

I was going to suggest a fur baby for you if you have the time. I was born in Baltimore MD. It’s been years since I’ve been there. I’m in Florida now. You have lots of judgement free support here. It can be tuff in the winter months in the winter states. I’m in Florida. Before I got this awful diagnosis I started cake decorating. Unfortunately after diagnosis and I started my medication my family members went full on attack mode. My mother asked me where I picked up hepatitis and my sister asked why my husband doesn’t have it. That’s only the start of the attacks with them. I have autoimmune hepatitis and pbc. I was caught early and my stage was saved from advancing because of this group. I. Fact my GI dr wouldn’t diagnose me. My husband and I had a talk with Robert and we told him my blood work numbers and he told me what I have. Another member told me to get away from my GI and see a Hepatologist. I went to the Mayo who right away agreed with robert and changed my medication because it was properly prescribed and my alt was going back up. I had a Liver biopsy that confirmed it. You can always contact a dog rescue on face book and ask them if you can foster and what help you may need to foster. Do you know what stage you are

[Ktltel]

HeadMinion,

It's hard isn't it? Doctors, doctors, tests and more tests. Anxiety in and of itself is an autoimmune disease. But with all the other things you're experiencing it's got to feel overwhelming. I'm sorry. It takes some time to wrap your head around the diagnosis. Give yourself some time. When your ready, educate yourself on the disease. Here on this forum, or your own research. Just know there is outdated information out there too.

In the meantime, take care of yourself. You have enough going on. Have you been prescribed URSO yet? If so, just take it (with food) and try to ease into another new normal.

Things change. It's not easy adjusting but sometimes we don't call the shots. Keep us posted. Did they tell you anything else? A diet, a stage? Take a deep breath. It will get better.

Stella ❤

[HeadMinion in reply to Ktltel]

Thank You so much for replying to my post. Its really hard, I see a Mental Health Therapist, Behavioral Counselor, Medication Management and Pain Management doctors as well as a Job Coach on a weekly basis. I have to watch my anxiety as a secondary condition to my PTSD is Psychogenic Non-electrical seizures that when they appear my entire body goes into complete shutdown for a few minutes. When they first appeared in 2004 I had 50 in 24 hours. The last thing I needed to add to all of my diagnosis's is PBC. I haven't been prescribed URSO yet, my GI is waiting for my Liver Biopsy to be scheduled to determine what stage I'm in.

It has me completely freaked out, I've tried so hard for the past 6 years to get myself back to somewhat of a normal life and re-integrated back into the workforce and now all of that hard work will all go away. I have 4 grand-children ranging from 8 years old down to 1 month old and I'm scared that I wont see them growing up, graduating High School and get to do all of the grandparents things with them.

[Ktltel in reply to HeadMinion]

All your hard work "won't" go away. Taking care of yourself still benefits your body in ways you can't see❤. Keep eating right, google liver friendly diet. Just baby your liver for now. Autoimmune disease run in packs. It's overwhelming when they pile on us like this.

Talk to your doctor, call him/her today and demand a Fibroscan. I'm not saying you shouldn't have the biopsy, but HAVE a Fibroscan in addition. *We now know they are more accurate in seeing what our PBC is doing "over" what a very small sample of "one" area of our livers shows.

My hepatologist didn't feel a Fibroscan was necessary either. Not true! **Several who have had biopsies and told they are early stage PBC have gone on to have a Fibroscan only to come to the shocking realisation that the disease was indeed further along. (How's that for a runaway sentence?) Please read it again.

I have my Fibroscan scheduled in April. I'm trying to lose enough weight to have it!! You have to be in a certain BMI for accuracy. Shame on me, I know believe me, that I allowed myself to gain my weight back. 😔

My biopsy last year at this time showed early stage PBC. But over this past year and 1/2 I have educated myself, listened to others on this forum here that KNOW what even some doctors still don't recognize, that biopsies only show one "minute sample" of a very large organ. It's nuts. That's like visiting New York and saying "I have seen the United States." Clearly, far from the real picture of things.

I empathize. We all have lives and loved ones. It's precious isn't it? But hang on. PBC can be managed... Some of our many late stage friends are managing, albeit not easily at all, but they still find the way to keep going and I bet they work hard at continuing to care for themselves.

Stella ❤

[My-life]

I also have PTSD. I have worked with my psychologists. Im still on clopin zoloft. Worked hard all my life. I have been somewhat of a tomgirl. Now at 61 what do I do never worked in an office. Growing a garden helps me. And I give to the elderly.( not that Im not) lol. Im surprised they dont give ssdi. Im tired alot. If you need to talk. Stay on here. I have learned more on here than anywhere. Be Blessed.