The conference that my Mom and I went to back in April was definitely life changing. However, I am still learning how to cope with the illness. There are still days where my depression gets the best of me and life seems impossible. The fatigue is still there and the on/off stomach pains. But now I have to apply what I’ve learned at the conference into my mundane life.
Here’s what I’ve learned:
- I can live a normal life with PSC
- There will be challenges
- Attitude is important
- Monitor my symptoms
- Pace myself
- Inform my professors about my illness and notify them that days might be missed.
- Everything will be okay
- The PSC support group will always be there
- Always find balance and have a social life even dating!!
- I have a good family support system
When I was first diagnosed in January it was a scary thing it was like damn another issue I have to deal with. PSC stands for Primary sclerosing cholangitis which scars the bile ducts and the liver. It’s a rare aggressive illness that causes an array of problems. The episodes I have mainly deal with the stomach and lots of fatigue. So I’m doing what I can to monitor my stress, and watching my diet. I have been gluten and diary free for about a year or two it does make a difference and I try to cut back on the sugar.
I meant some great people at the conference and nothing was off the table. I didn’t feel like a weirdo talking about my symptoms and how they take a toll on me emotionally. Most of all I feel like a burden because I am in the early stages and still figuring out how to manage. Sometimes my stomach pains are random and it sucks. It used to happen at night and now I’m taking something to help keep it under control.
My latest doctor’s visit was somewhat hopeful, and my liver enzymes are stabilizing and the stent is working. But the doctor is concerned about my cells causing me to be at risk of well I won’t say the word just yet. The biggest lesson I learned from the conference is to live life and be a little bit more appreciative and to know that there is hope. I met someone who has been dealing with PSC for 22 years! Some people have transplants some don’t, and I’ve been considering getting one, but my symptoms aren’t there yet. All I can do is continue to hope and keep my head held up high.
This will be an ongoing challenge and I’m thankful for my family for giving me the support I need and eventually I can take care of myself and live a normal life. Some days my future seems blurry, and some days it looks bright. So, I just have to think about the positive feedback I got at the conference and to just keep moving forward.