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They say Be Your Own Advocate - but how does a sick person do that?

Posted by admin with patient permission who wishes to remain anonymous.

PBC stage 3/4 here. Need to be your own advocate and that is so hard to do when you are sick.

I thought I was recovering from flu still months later, took week off from work to just sleep and recoup...that was almost 2 years ago. Haven’t returned to work, cirrhosis due to PBC (diagnosis took at least 2 months). The paperwork for long term disability, filing for SSD (well over a year now, denied and waiting appeal ruling since Sept 2017) and doctor visits, bills...gotta sleep, shower, feed yourself and the kids and the’s maddening.

My 80 year old mother does my grocery shopping because it’s too exhausting. The fatigue is incredibly debilitating, the memory loss embarrassing, the patience gone...socializing/volunteering gone...visits with friends you actually do still see? Fake it till ya make it then go home and finally sleep for a few days. Had to downsize & sell home & car...blew through savings in a few months, luckily I have retirement 401k I now dip into. There was no “accident” but life sure did seem to change quickly. Made it to Liver Transplant Center for live donor consideration and they are excited because I am “sick healthy” great candidate - get biopsy and they say we don’t think you have cirrhosis...Maybe stage 3, possibly 2. Can’t say they can rule in or out PBC although the report clearly refers to damage to the bile ducts which pisses off my GI. No further tests needed...Stay on your meds, lose weight blah blah. Bye...throughout all this I sought out neurologists to help explain cognitive issues such as memory loss, speech impairment (15 months of speech therapy-just “graduated” last month). I sought out nutritionists...3 to be exact and they were all different. 😂


I have liver disease, how is the approach so different with them? Plus with the cognitive stuff going on, just too much at the time...lists of what to do and not do. When folks get diagnosed with liver disease, they should go through a Wellness Program that covers it all. I spent hours, literally ALL of my energy when I first got sick about liver disease, complications, what to expect, what tests should be run my Dr at the time wasn’t. I was and am still so so so tired, to then be told last week my long term disability will end in June because my disease is due to alcohol abuse. Oh lord you got to be kidding me - it just doesn’t end - I was flabbergasted! (Look I get it when I end up in ER with painful flare ups and you tell them liver disease they automatically go to alcohol...the nurses AND Dr all have a better understanding by the time I leave I promise you that lol.

I’ve been diagnosed by numerous doctors with PBC an auto immune disease. Seriously, WHY does everyone go immediately to alcohol? This is my insurance too - they have access to all my records, of course I got a new claim manager who can’t tell me where that came from but “their medical review”. I said fine, I’ll get you letters from my doctors explaining my diagnosis. Here I go again, constantly chasing paperwork and calls when I just want to focus on my spoons for the day and maybe shower! I just feel like I can’t do it anymore. My body is getting worn down physically, tears in my elbow from “overuse”. That’s funny...overuse of the remote possibly?😂. Where I was 2 years ago compared to now? OMG much better! I was having problems breathing and literally couldn’t host meetings at work anymore.

I have no clue financially what the future holds, returning to work how will that work when I never know how I am gonna feel...heck I have reminders on my phone telling me to eat because I forget. Simple things take me a long time, learn something new? I was happy hard working single mom with a demanding technical compliance position in a bank running multi million dollar projects with tons of interest and laughter. Now...I am a liver patient, the fact I can unload the dishwasher in one shot by myself is an accomplishment. I am thankful for my care team I have now...but it took me a good bit to get there. And I am a lucky one, my primary care Dr has been with me the whole way through not giving up and educating himself about PBC.

What to talk to Congress about? How to help get the care & proper tests, get people the medicine that can slow down the disease Ursodiol & Ocaliva (that was a fight to get that approved!) education on the disease and medical terminology such as varices and ascites...I got it from Liver support groups...get sick patients an advocate to navigate all this! Financial Assistance...we learn from reading posts like this, and reach out to each other...”what do you take for energy, what is correct dosage for Urso, do I need a biopsy”...oh here is a good one - one chart for Fibroscan results based on disease that all Drs use...not one size fits all. Ugh! And I’d like to be able to get another one each year to help monitor the health of my liver...I can get a mammogram, why can’t I do this too? Oh boy, I am so sorry - did this end up being some crazy rant? My apologies...sleep disorders are common for us too, lack of sleep can make us a bit irritable 😉

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