Waiting is painful, especially when you don’t know what’s happening next. You feel stuck in No Man’s Land. It leads to a mental funk, spiraling depression, and despair. When I had Hep C, and my liver was inflamed and injured, sometimes I wanted to quit. We grow tired of waiting to get better, or get good news. We may throw a pity party. Next we get everything out on the table. Then we can look for ways survive while we hanging out in limbo with liver disease.
Face the Truth – First of all, try letting all of your emotions out. Cry, kick, scream, whine, and moan. I’m a believer in going through all the stages of grief, starting with denial.
Do You Have to Let it Linger – Try not to languish for too long during the hateful and pouty stage. It doesn’t help. Instead, fast forward to the fact things are going to be different around here from now on.
I personally think everything can get better
Between the Now and the Not Yet is a space where you get to take a long look at the “right now”. It seems like we humans are always trying to wiggle out of something or into something. We are not quite happy where we are – until a disaster hits – like liver disease. Then we get all shook and worry about the future or the past. I’m an optimist and always always look for the better. It keeps me from being bitter.
Right Here Right Now you can just sit with yourself and have some compassion. You have been given a tough row to hoe. Here are some things to meditate on while you wait.
In Limbo with Liver Disease
Waiting for Treatment – If your doctor has advised that you need treatment, like for Hepatitis, it is hard to wait. Sometimes approval is needed by the insurance company, or other tests need to be ran. If you have a difficult type of Hepatitis, there may not be a cure yet. In that case, you have to manage the symptoms with lifestyle, diet, and medication.
Waiting for Tests Results – If your medical team has ordered blood labs, cat scans, ultra sounds, or a biopsy it can seem like an eternity to wait for your appointment. This is the time to read everything Positive that you can get your hands on. It can help to have a paper where you chart your results. Then you can look at them and see if they improve over time. If they do not improve, you can ask about ways to get help for that.
Waiting to Feel Better – We have to hope that the aches, fatigue, and pain will go away. Surely the anemia or flu like symptoms will lighten up, right? The problems here is that you might not feel better. If you can’t cure the liver disease, this is your new normal. For example, autoimmune Hepatitis has no cure. Neither does Primary Billiary Cholangitis, or Hepatitis B.
Many people have learned to make the dietary and lifestyle changes that they can, and learn that they may NOT feel better soon. There is no treatment. All they can do is screen with blood tests and take medication. I’ve met many of those people recently. They are all ages, and live with all stages of liver disease. If you have Hep C, be thankful that there is a
If you have any other type of liver disease, such as NASH or NAFLD from fatty liver, or autoimmune, crohn’s, or other illness – I hope you are able to find a comfort from my journey. I’ve made it through the worst, even HCC liver cancer and transplant. I’ve been in limbo with liver disease for years, and learned to have compassion on myself and take good care of me during the wait. All my best. xo Karen
2 thoughts on “In Limbo with Liver Disease”
Karen, I pretty much read your site and any link to them ! I am quite impressed and may I add humbled at your terrific attitude and your strength of helping while waiting to heal, facing each day with such strength and willingness to help others as you display.
I to have Hepatitis C and even though I am supposed to be cured; I still read and stay well read about our disease.
I am a 1b , stage 2 in remission patient. Your attitude is amazing
I stayed somewhat sane by helping to run a chat room to educate. Or simply listen to those who were frightened. Or waiting for TX to transplant. I will never regret one moment of time spent to educate or just be a shoulder to lean on . I saw many fight and some loose the fight, people waiting for years for transplant to go to their Heavenly Father after or waiting; so many wonderful people helping to teach or hold a cyber hand . I met life long friends and loved people I never saw in person. This is definitely anyone’s disease. However there are still many facing this insidious disease even now where some go undetect or told they are cured to those that make it to get their transplant to leave us still.
Things have moved forward many survive and do very well.
Having only now met you verbally ; I am much impressed by your gentle vigilance and selfless kindness.
I was a manager on Delphi , one of many dedicated to helping others while fighting the sides of treatment ( Ribavirin ) which left many many crazy sides.
Seekers Hep C and many more rooms are no longer active or exist as many did to and did well or got by. Many gave much of their exhausted parts to help prepare patients with hope, diet, what would help or hurt. It amamazed me how people could put others before themselves to help them live or educate them on “ What not to do and what they should be doing including diet, abstinence of drugs or alcohol. The list is long and much accolades to those that spent endless hours educating, holding cyber hands , making life long friends and loving people. Simply put they gave 100% and took what was offered and thankful. Hoppers became friends- family- found love, fought the fight. Kudos to those who stayed online to teach. , listen or hold their cyber hands to the angst of family that felt left out even though they were not.
You remind me so much of that time when worry, stress , fighting to win against this virus to those who still found a way to laugh or make others laugh to holding the hand of those that waiting for what seem like forever to get their successful transplant to those that fought the fight and cared for them self’s with true diligence , I have not been online as most of the rooms closed and people moved forward to “live”.
Thank you so much for being there for those that. Seek you and your kind heart and information that will give them their best chance. You are like a ray of sunshine on Avery long and cloudy day.
God bless you . I am sure I would have felt blessed in knowing you, your unseen but felt big heart and information , many of us struggling to do it part , adding it to those that gave before and amazingly “love” to strangers far and wide.
I would love to help in anyway I may . It would be my pleasure. I am thankful for the respite my Lord , doctors and people like yourself who shared information while sometimes giving me a shoulder to cry on.
Please get in touch with me if I may help in anyway, and. aI mean this.
Prayers for all that are facing this fight and the helpers, friends, loved ones that fight along with.
God bless you , Lady and you are in my prayers. Please let me know. Bigggest of hugs
Thank you so much. This was a wonderful comment to read and very reassuring. I appreciate you taking the time to drop by and start this exchange.
I can hear the courage, and the weariness, in your voice. It’s a tough battle, and it teaches us so much strength.
So many stories over the years. I know your heart is full. I was online at first. It was great to be active in the forums. So much support for the new PIs. Then it became fewer and fewer people. Soon I was typing the same answers in and started the blog. I never dreamed it would welcome over a million readers in a few years. I’m coming up on my 6th anniversary and you’ve inspired me to write a blog about it.
I’ve emailed you privately to ask a question and hope to hear from you again soon!
Much much love,
Xoxo Karen
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