How are you living the good live in spite of your PSC? How do you go about making plans for the future? Do your family/partner/co-planners fall in step with planning or do they plan with accommodations in mind for your health related limitations/deterioration? How do you stay inspired to dream your dreams without limitations? Is there a line between denial and acceptance that you have defined and , if so, how do you maintain that boundary? Do you temper your dreams now that you have psc or do you laugh in the face of your disease and go on In spite of it?
Those are some tough, personal questions to answer, Dolphin, but very valid ones.
My wife has some understanding of what I go through, and will in the future. But I don't think the reality has hit home yet, as my health is still pretty good. She knows it will change in the future. We know that things will get worse eventually, and that there are no guarentees that a liver will be available when I need it.
My brother's wife is a nurse admin at the hospital where the transplant center is located, so she has a very good idea of what is in store for me. And I am sure she has talked with my brother about it. Both my mom and mother in law were nurses, so that helps.
We have talked about going to the Grand Canyon some time this year, in an effort to do more things before things get worse. Last September, we went camping in north Georgia and had a blast, and look forward to doing it again.
My parents just gave us a bowflex exercise equipment so I can try to not lose muscle mass.
It think that knowing that any day outside of a hospital is a damn good day is a thought that really keeps me grounded, focused and appreciative of good health. So I can laugh at psc for now, but I know there will be peaks and valleys on the way to a new liver.
It helps to have faith that everything will eventually work out, but that is tempered with the reality that there are no guarentees. Balancing that can be a daily challenge that is different for all of us.
I hope your significant other is doing better. And you too.
Jeff
Thanks, Jeff. Yes, tough questions , indeed. It is encouraging , I believe, to hear how others deal with chronic illness. I like your statement , “having faith that everything will eventually work out…” Remembering that even in the midst of it all there is much to be grateful for no matter how things go:
-I have the desire and ability to care for my partner
-that we can still laugh together
- I have people in my life that love me… and much more
I know I can choose how to respond to anything that life offers with bravery rather than fear. Fear squeezes the joy that actually exists in the midst of it all: if I choose to pay attention to the joy. If I keep allowing fear to take control then pretty soon… poof, that’s all I’ll end up with… a joyless life. And, that spirit of fear will be toxic to others in my life. What a terrible thing to do to those that I love! If I were super- human, I could probably maintain this spirit, but it is something I am conscious of and aspire to, anyway.
It sounds like you have some great support too and are doing what you can to stay as healthy as possible. Maybe , who knows, you will be one of the more fortunate ones that your PSC progresses so slowly that you can live a fairly normal life.
Thanks again for sharing what works for you. Blessings to you and yours.
Dolphin5
Dolphin5,
Thank you for the post.
I'm new to the forum and haven't even introduced myself to the membership yet, but some of your questions are the same that are bouncing around my head right now--particularly the ones about planning and living or tempering your goals (dreams). Since my diagnosis last year, I find that I let the PSC diagnosis influence a lot of my decision making. I'm mostly symptom-free now, and things are looking up, but still the fear of PSC related troubles pops into my reasoning all the time. For instance, I just booked a week vacation out of town for the summer--the first for my family in many years. As I was making the arrangements, I was constantly needled by doubts regarding my health. The "what-ifs." I finally decided to gamble and make the arrangements because I reasoned it wasn't right to hold back the whole family on a "what-if". And they would understand if something did come up.
At work, I'm running into similar planning problems. I work for a very small company. We all rely on each other to make things happen. In the organization, I'm pretty much the mule that pulls the plow. If I don't perform, the company suffers. I now find that I'm making decisions that could help the company more should anything happen to me, trying to intentionally diminish my importance to the company.
So I guess you can say I'm tempering my goals a bit. But I'm new at this. I'm still coming up with a strategy for the new me, so that could easily (or not so easily) change.
Thanks again for your post. It really helped me reflect on some of my more recent behaviors.
Avid Reader
It seems wise that if you have no symptoms, live like you don't have PSC as much as possible. See your doctor as recommended and pay little attention to it aside from living a healthy lifestyle. You just have no idea if you will ever develop symptoms and then if you do, it might be so slowly that it impacts your life minimally. One of my husband's doctors told my husband to go on with his life and do the things he wanted to do. Since my husband had been hospitalized a couple of times for cholangitis he suggested having a prescription of antibiotic on hand for that, especially when traveling. He trusted that my husband would know when and if he needed to begin taking it. A cholangitis attack comes on slowly, most see some yellowing of the skin or increased itching of the skin and in the early stages it seems like it can be nipped in the gut (haha) quickly with a round of cipro or something like it that is good for bile duct related infection.
We happen to be more in a stage where it is hard to ignore the PSC... but we try to as much as possible . And we try to accept that this is the new normal... not having energy to do some things and needing more sleep and sometimes changing plans. It is a hard road sometimes though. One can get better at not clinging to things that we have no control over... I guess that is one plus of learning to live with the difficulties that come with being alive. Nobody ever said it would be easy and the best we can to is find a way to live well in spite of all the challenges. Also,it is important to cut ourselves some slack when have a difficult time doing that.
Hang in there Avid Reader and have a great trip this summer!
Dolphin5,
Thank you for the post.
I'm new to the forum and haven't even introduced myself to the membership yet, but some of your questions are the same that are bouncing around my head right now--particularly the ones about planning and living or tempering your goals (dreams). Since my diagnosis last year, I find that I let the PSC diagnosis influence a lot of my decision making. I'm mostly symptom-free now, and things are looking up, but still the fear of PSC related troubles pops into my reasoning all the time. For instance, I just booked a week vacation out of town for the summer--the first for my family in many years. As I was making the arrangements, I was constantly needled by doubts regarding my health. The "what-ifs." I finally decided to gamble and make the arrangements because I reasoned it wasn't right to hold back the whole family on a "what-if". And they would understand if something did come up.
At work, I'm running into similar planning problems. I work for a very small company. We all rely on each other to make things happen. In the organization, I'm pretty much the mule that pulls the plow. If I don't perform, the company suffers. I now find that I'm making decisions that could help the company more should anything happen to me, trying to intentionally diminish my importance to the company.
So I guess you can say I'm tempering my goals a bit. But I'm new at this. I'm still coming up with a strategy for the new me, so that could easily (or not so easily) change.
Thanks again for your post. It really helped me reflect on some of my more recent behaviors.
Avid Reader