Cirrhosis is a Pain in the Neck
I’ve been walking around like Gomer Pyle for a long time. It’s gotten worse since the transplant. You know, because of the big tummy scar and all…. So, the one thing that I was determined to work on in Sedona was neck and shoulder pain. Lucky me, my cousin’s bestests long time friend is a chiropractor. He’s not a hard jerking bone cracking type of man. He’s gentle. More than that, he’s an emotional baggage unpacker. Really, it’s on his business card. After going in twice a week all month, we got a lot of kinks worked out in my body – and my whole dad gummed self. New insights mean new skills for dealing with pain. Neck pain and any other kind of pain because cirrhosis is a pain in the neck.
One of the first things that came out as we talked and worked together was that I have been carrying the weight of the world on my shoulders.
Here’s a list of the stuff I have felt personally responsible for:
Caring for my family
Staying alive
Finishing Hep C treatment
Getting through HCC cancer
Living through a transplant
Eating healthy
Not being a burden on my family
Staying on medical insurance
Paying medical costs
Picking out a nursing home (just in case – oh yes I did)
Trying to look pretty when I felt like crap
Acting alert when my brain was foggy
Hiding the fact that I couldn’t figure out simple things
Smiling through the pain
Supporting my loved ones in their goals
Sneaking naps and not telling anyone
Worrying about all this and more, way way way too much
Well, as I began my last week of retreat, I looked back over all of the work I’d done. I sat in the canyon and wrote every day. (The journal is a scribbly mess) The above list is only a small part of what I’ve worked on. More stuff crops up every day. It needs to be cleared out.
So this blog is all about how I’m listening to my body now. When my neck and shoulders get stiff and achy, I stop and listen to my thoughts. Most of the time when I feel stiffness, I’m rehearsing a story about something I feel responsible to fix. My mind passes it’s pain onto my body. I try and write about it and it’s pretty incoherent…. except to me. You’re getting the semi edited version.
The whole point is this: I’m done. I’m done with the ceaseless storyline that started with the Hepatitis C diagnosis. I’m done with the burden of it all. You know that I’m a positive idealist. But that doesn’t mean I’m not without worry and fear. Read these simple steps to relieve shoulder and neck pain. See if any of them will benefit you. Here’s what that looks like for me:
I’m listening more closely to my thought life.
When tension builds up in my neck, I stop and feel the pain.
I pull my shoulders back and take deep breaths.
Sometimes I relax in a chair.
Sometimes lying down flat helps.
Each inhale goes straight into my shoulders.
I imagine my breath infusing my neck with life giving oxygen.
I simply count my breaths. 1 2 3 4 inhale and hold for 1 2 3 4 and exhale 1 2 3 4 5 6 7 8.
I relax more and more with each exhale.
I continue breathing and then move to healing words, scriptures, mental images, or phrases.
Some of my new phrases include:
I am only responsible for this breath in this moment.
There is nothing that needs to be fixed right now.
Everything is working for my good.
I trust that life will unfold as it should.
There is no need for me to control any situation.
All of my needs will be met.
It is safe for me to rest and relax.
All of the resources I need will arrive on time.
It’s ok for me to let go of stress.
You can borrow a phrase from me. I’ve borrowed them from others. Please leave a comment with any of the phrases that work for you. When cirrhosis is a pain in the neck, we can stick tight because we get each other. I like it when we share our burdens and also share the stuff that helps us.
That’s what best friends do. We love, xoxox Karen:)
24 thoughts on “Cirrhosis is a Pain in the Neck”
Love this post Karen.
I’m lol. Somehow I knew you would. 😉
It’s ok for me to think of my needs and concerns first
Thanks for adding a statement to the list. I’m saying this with you honey.
It’s the truth. When we stop worrying about what everyone will do, think, or say… we give ourselves permission to just be who were are.
Let’s remind each other. Love you. xo
Love you sweet lady!! Always a true blessing! Yes I agree and I’ve been trying to just let things go and relax. I always had to have everything in place. I couldn’t rest until everything was fine. On good days I would do so much work that it would get me down for several days. For instance my garden it doesn’t wait for you to feel better. I have older parents also and they hadn’t even cut their okra do I went and done it. I’ve learned now to let my kids help out more. They had chores but not the major ones. I dropped my expectations that everything had to be done my way and now I’m ok with however they choose to help as long as they get some things done. I’m learning to spend more time embracing my children and having fun teaching them about God more and loving life. Thank you for all that you do.
I owe you an email sweet child. It’s been really busy and I am almost finished with that project. You’ll be the first to know. I’ve worked hard on it.
Why is it that we need everything in place? I go through the same thing. Can’t relax on the porch if it’s not swept. Last weekend, I just put a towel over the dirty cushions.
Then I relaxed and ate watermelon. I even lay down and slept for a bit. Expectations is a crusher. It can make us mentally tired and crush us under the weight.
I’m really happy to hear that you’re chillin. We can encourage each other. Maybe the next person to read your comment will pass that vibe on to their kids.
Thanks so much for sharing and caring. I love you, xo Karen
This is so me too! You are so insightful. I will use these too!
We’re a like in so many ways. I love that we got to meet. When we help ourselves first, everyone benefits, right mama? haha!
Karen, oh the journey that we sometimes need to take in order to get to the place that you have arrived at. You said it yourself….”The whole point is this: I’m done”. Following your statement are many breakthroughs. The greatest? Coming to the point where your hope lies in and only in COMPLETE TRUST! Trust in what? In the doctor? Trust in your newfound simple steps? Even though these are great, fantastic and keep you focused, the trust that I see and read in this blog is COMPLETE TRUST IN GOD. COMPLETE TRUST IN HIS LOVE, IN HIS PLAN, IN HIS PROMISES. Reads as if you have found that now dear one.
Ugh, Im sorry that its painful. Im sorry that the journey has been uphill. But, downhill is so much easier and maybe you are on that path now? Oh I pray so. I pray for so many. I pray for God to remind us that this life is but a vapor and temporary and that we have so much more to look forward to after this lifetime. Are we in the moment? In the body? Is there pain? Oh God yes. I so wish the Lord would give us a heavenly taste sometimes of what is promised to us after this short span. Nothing in this life is compared to the glory that will be revealed in us. Glory. A new Glorious eternal heavenly body and life. Our blessed hope.
“Lord help us. We hurt and we need to “see” beyond the physical into that spiritual hope! Show my friend. Show me, Amen.”
Frannie,
You’re certainly a prime example of God’s faithfulness. You’ve fought some really difficult battles since we first met. Oh my gosh and you have come through them all triumphantly! Those battles actually help define us as we move toward healing. I wouldn’t trade anything for the journey I’ve been on. I love the way you talk about glory. And we do get to experience it day by day too, don’t we.
I loved your recent post showing all of your travels. Really, a couple of years ago… Who would’ve thought. Your sweet hubby stood by you through it all and now you two are having such a great time. Congratulations to you both… and you’re family has been an awesome blessing too.
I love you sweet friend. Thanks so much for stopping by and chatting. xoxoxo Karen
Dec 19 2014.
My Last pill. 3 months later declared cured.
6 months later still cured.
12 months later still cured.
18 months later still cured.
Had my Gall Bladder out on Feb 7th 2016. He did a HCV test and a Liver Biopsy while in there. Still Cured but living with Fibrosis stage 2. It has always been Fibro 2. I pray it will be stage 1 soon and then regenerated normal soon also oh how I hope. I pray for you.
I believe!
France,
What joy at seeing your numbers!
You’ve beat all the odds. Your faith has remained strong. I hadn’t heard about your gall bladder. That makes sense. I know you’ve dealt with a lot and hope that this has cleared a lot of symptoms up for you.
I’m totally agreement with you that your liver will continue to heal!!! What a miracle. Stage 2 is a walk in the park. You’ve got a lot of favor!
I love you honey,
Karen
Just found this website…and I love it!! How nice to feel like we do not have to deal with this illness alone.
I was dx with chronic hepc in 2009…had liver biopsy…dx with stage 3/4 cirrhosis.
I sometimes get very depressed but I think of my grandchildren, my granddaughter was born June 27 in Boston premature, weighing 3 lbs.
She’s doing great….she’s a fighter and a good example of not giving up.
Karen, you have a great sense of humor with some helpful & practical advice.
Thank you so much.
I’m so glad you found us too! It does me good to know that other’s are struggling with the same things too. We really can live a strong and vital life with the right attitude, nutrition, and support. Mostly, I think it’s the things we value that keep us going. Family is certainly one thing that motivates me too.
Congratulations on your new baby girl! I sending love and prayers that her health improves rapidly. That’s one of the coolest things about life. Everything grows. With time, love, and patience, we all grow and she will too! What a miracle.
Let me know if I can do anything at all.
xo Karen
Karen, Always good to read your posts. I first found your blog after liver injury from a commonly used antibiotic. My liver ceased to function and I spent 4 months at home, and back and forth to doctors until one specialist finally realized what had caused it all. Other doctors had kept telling me there was no way that drug would do what it did. Hmmm. Your post on liver pain is one I used frequently when care providers would insist that my liver could not feel any pain. I’ve used it to help educate a few of them. 🙂 It’s been a year since I came back to work and there are still foods and/or quantities of foods that will let me know I’ve made my liver fussy. Thanks for sharing your journey with us.
Oh my gosh, what a story! Taking an antibiotic that then caused liver damage. I am so very sorry to hear this. I know there are other ones that can damage your tendons, what a nightmare when a tendon snaps. I agree, you can feel pain. I don’t know why doctors say you can’t. I have even heard of people that get a stiff right shoulder. I am so happy that you found out what was going on and were able to recover. Your story is very inspirational, I appreciate you sharing so much. (Oh antibiotics are in the quinolone family, levaquin is one) Thank you so much for sharing your story! Dee
It’s ok for me to think of my needs and concerns first
Me too! Good one and thanks for sharing!
Karen, I am sure I will never meet you, but I feel like we are BEST friends! You are an amazing women and through you so many gain knowledge, strength and HOPE!
Thank you for all you do and Please remember to be kind to YOURSELF!!! We ALL need You!
I have had FLD for 8 years and March of 2016 was diagnoised with Stage 4 Fibrosis/cirrhosis.No symptoms , nothing. My “sins” Diabetes for 36 years, and I took Methorexate for 8 years for psoratic arthitis…they told me it was SAFE. I also took vitamins with high doses of Vit. A…Well…can’t go back can only go forward…..I am determined to regenerate my liver…and reverse the damage…diet…clean eating, GF, no preservatives, nothing artificial if I can help it, organic when I can afford it! Walking 2 miles a day and working hard to “let go” in fact my Mantra to relax is “Let GO” as I breath in and “LET GOD” as I breath out…it works for me…By the Grace of God I feel Great and plan to stay this way for a LONG time!
We all need to find a way to be good to ourselves! I thank God for You Karen and all the good you are doing…Please keep it up…and God Bless all those who are struggling…the fight continues !
What a kind post and I LOVE all the caps. You know how you maximize what you think about. We ARE best friends and who knows… I’ve got to meet a lot of people who are in my online community! One of the things I’m doing these days is talking about nutrition with liver and kidney disease. Oklahoma has a lot of Native Americans and I’m helping to provide education for a low sodium diet. Maybe I can come to your town and talk sometime! Who knows.
God does lead us when we listen. I move forward in every situation and love it that you LET Go too!
I’ve seen so many people reverse damage to their body by changing their lifestyle. You’ve got everything it takes to do just that!
Thanks so much for stopping by. I love encouragement.
xo Karen
Hi karen
It’s been awhile I wrote some time back last year after being diagnosed with cirriohis stage 4. I newvi had it yor some years but not stagec4. I had treatment which was successful. HARVONI a wonder drug no side effects nothing amazing. I did tell u my husband died in 2009 Re liver failure and cancer. Anyways I am writing to found out since u may know. I have of course have to have cancer screening every months. They found gallstones irevelevant to the other issue right. Well I’ve been having some issues not necessay sharp but dull pain usually in evenings. I bloat like crazy. Did go to emerg after work one nite and got nowhere. I saw my family Dr who referred me to a surgeon. Now this is where I’m stumped. He simply said I will not do auger to remove gallbladder as it will put you in liver failure immediately. Well that sucked. But issues are still there.I’m to go on a low fat diet for 2 weeks then see him again. So any clue. Is this info true. I’m now do upset as I know if it get worse there are more severe issues with infection. There’s a word but I don’t remember it.
Any thoughts would be helpful. It’s nice to know there is sways a place I can vent or just ask a question. Thankyou ..
Chris
This sounds like me. My doctor said any surgery was a high risk for me. So now you know the main reason I started this blog. I was doing everything in the world to eat right and stay alive!
You can do this. That low fat diet may suck in the beginning. Once you get used to it, fatty and salty foods will taste gross. Please try not to worry, as this can make you feel worse. I’m not sure about the infection part. Ascites is where you swell up and retain water. Gallstones can get infected. Try to take really good care of your body. Move as much as you can. Drink a lot of water. I’m pulling for you.
And YES I remember you. I love it when friends like you stay in touch. Please remember to keep me posted. Let me know if I an research anything for you. xo Karen
Hey karen as usual u always make me feel better. The gallsone issue if it gets infected then there is a ptoblem that can be deadly. So removing is a last resort cause then dr says I will go into liver failure immedistely Sucks doesn’t it. So I am going the healthy thing. It’s not a hard thing but money for me is a issue. I work for min. Wage and a widow so I have budget so carefully. I have the usual bills so eating healthy I’ll do what I can. In this last week I gave felt 50%better no pain but there are moments I do. But u asked me if there was anything u could research for me and the answer is yes.
Months maybe Feb I developed a rash on my body my back. Itcy a little but would not go away at this same time I had sores in my mouth it felt inflamed it hurt to eat almost anything a tea everything still does I went to numerous drs to no avail.went to have a oral cancer screening to found out could be lichen planus they wanted $200.00 for a biospy But finally my family Dr of 30 years and we got to talking and he checked me out and felt it was most likely that. Referred me to dermatologist who confirmed it without charge. So it has spread to my feet. My mouth is the main problem. Hard to eat or drink so this year is one thing after another. I have researched but I can’t seem to get a specific time frame as to when this might go away and if it is the Hep c or dental work that has caused this.as I have had partials made last year the end and what the hell is going on with me. I’m so tired. Waiting on special ists has been time consuming. So the lichen planus if u could go a research on it I would apprecite it. And if I have the surgery why would I go into liver failure.
I’m just tired
Thankyou karen
Chris,
Just now reading your story. I had a computer problems and so many comments sat waiting. Even though it’s been a while, I wanted to reach out to you. This is quite a story. I’m praying that you have been able to find a cure. With end stage liver disease, so many things can go wrong and I’m worried about you.
I hope you were able to find some relief. xoxo
xo Karen
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