Best Friends stick close.Life is hard with Hepatitis C and Cirrhosis. We can share Good Words, Poems, Pictures, and Laughter.
We all need a best friend who can remind us of the good things in life. We want a friend who will accept us for what we are and remind us of what we can become.
Best Friends cry with us when life gets hard. They laugh at our crazy stories. They can tell us when to straighten up and still let us know that they are on our side in life.
I hope you will share with me. I need a Best Friend too. I’m in the battle with you. xo Karen:)
23 thoughts on “Best Friends”
Hey Karen and Friends.
I have enjoyed friendship, endured loneliness, experienced the unconditional (but not always unchallenging) joy of parenthood. I am sustained by the exchange of love between humans and wounded when it is taken for granted or disabused.
Glass half and a bit full – (hint if its looking empty just look up from a lower angle)
I have always worked hard, been kind, never been wealthy in $$ but rich in friendships.
I lost myself when I fell into isolation. I was able to fake it for my kids, but they are not blind. I discovered this website and it was during a week that has turned things around for me. I was inspired by Karen’s courage and technosavvy and reassured that cyberville responded.
A seismic shift has occurred and I am about to rehabilitate my body and mind.
I will be back in a month. My goal is to be a stronger person. My lack of love for the almighty dollar is unchanged and I hope to repay my second chance through compassion, love, light, sharing, caring, being a good Dad, being there for anyone who wants to listen or be heard on this site and volunteering the remainder of my working life to the greater good.
Love to all,
Guido
I am so dang proud of you Guido. You are really doing it. You will meet all your goals. Henry David Thoreau said: Rather than love, than fame, than money, give me truth. You’ve seen the truth dear friend. It’s gonna set you free.
I may take you up on that volunteering sometime. You are too kind. I’m just a hep c survivor trying to be a good human bean. xo K
Hey Karen
You’re doing a great job of bean a good human being. The site looks great, one stop shopping for the dedicated (working hard at surviving), the stubborn (hoping denial, divine intervention or luck will halt the progress of liver disease), and the lost (depressed, resigned, poor, marginalized blissfully unignorant) veteran survivors. It is also an excellent resource for the newly diagnosed who are understandably scared, overwhelmed, confused and bewildered.
I have experienced all four of the above feelings and am finally and thankfully in the dedicated category.
It is an undeniable fact that the quicker I had moved from “newly diagnosed” to “dedicated” would have greatly reduced the physical and mental complications that arose in the intervening years of “stubborn” and finally” lost”.
For those trapped in the addictions that so often lead to the double diagnosis of Hep C and cirrhosis, reducing the months or years spent languishing in “stubborn” and “lost” can literally be a life saver.
The best thing about this site is that it combines warmth, compassion, professional advice and links, advice and ideas direct from fellow survivors and the chance to remain anonymous or not.
All power to you Karen for having the serenity to accept what you could not change, the courage to change the things you could and the wisdom to not only know the difference but to put your energy into something so positive.
In Gratitude,
Guido
You’re the bomb Guido. You should write for our Best Friends – The dedicated, stubborn, lost, survivors. I think that many would benefit from your moving story.
I don’t know what else to say. Your kind words are making me cry this morning. I’m going to take my full heart and hit the yoga mat for prayer and wake up.
I’ll be lifting my hands in thanks for all of us who are surviving and finding our way.
xoxo K
What an amazing person u r Guido, I wish I had a quarter of your confidence and courage. One day I feel great next day im down again its horrible so confusing. Im praying one day it will not drop so low. U will achieve things in a big way I know u will I wish there was more people like yourself the world would be a much happier place.
Michelle,
I agree with you. Guido has had an amazing journey and continues to face each day with courage. I am glad that you enjoyed his story.
You too can achieve things in a big way. Sometimes the thoughts we have make us dizzy as we try to figure out how to approach life. I believe that you are a seeker. That in itself is the first step.
See? Your words have made my world happier today. Many others will be able to identify with you and be blessed also. Thank you for sharing.
Much love,
xo Karen:)
Just read your note about Esophageal Varices Banding . Thanks for the info, I already had it done yesterday and they way the doctor talked I’d have no pain and be back to work the next day. All he mentioned afterwards is that he did “5”. I wondered why he bothered to give me a number but after reading your story about the more bands the more pain and also that you can go into spasm (which I did, big time), I realize I’m not dying. The doctor didn’t follow up after the surgery but left the hospital. I called his office and they just said back pain isn’t their area to call my doctor. I just wanted to know what pain medication I could take that isn’t a blood thinner. I have Oxycodone from my kidney stone last January so I popped one of those. That helped a lot. Now think I’ll just try Tylenol. They also said I could eat within 24 hours so I hadn’t gone out to buy special food. God I hate doctors!
Hi! It is always good to see a fellow survivor of the bandings. I remember how awful it was to read about them in the begining. I hope the Oxycodone helps. They gave me some morphine something… I just know it worked and I used it. I didn’t need it with the bandings where they only did a few. It really makes me frustrated when we have to call a primary for a procedure that they didn’t even perfom??? Thankfully you had some meds left over.grrr.
I’m having a banding in a couple of weeks. I can tell now that I have some because swallowing is difficult.
It is awesome that you found the website just when you needed it. That means the whole world to me and is why I blog all my stuff out there. We’re not alone dealing with liver disease hunnyo.
I’m hopeing you feel a ton better by now and are eating some soft foods. Mostly I wish you all the best in your future. Let’s stay in touch.
Best Friends,
xo Karen:)
Reading your story makes me hate ignorant uncaring doctors. I am so sorry for what you experienced. I know it was a while back, still touched me. Dee
Hope you’re doing well and I think that I was not getting it this way. Now I’m just very grateful to be able to do this. I’m just going to thank you again for the whole thing that I was not getting it is just.. very nice to be honest and open so I have been doing not so well.My will to be is stronger than ever before and I am just hoping for the best of what I do or whatever. The health well I am just trying best but very selfaware with my body and its the whole thing that I will never give up.latley I have noticed that I find myself so focused on the whole thing that I am32 MY way to get back to accept has
been thinking about my old life and the other things that really juSt slow down the whole road to be better for a moment a day and so on. Ill wrap it up and I am just thankful for right now
Hi there! I am sorry that I am just writing to you. Sometimes my system doesn’t work well and there are issues where I can’t see the posts. I am working on it. I just wanted to say that I am sorry for what you are going through and I thought that this link might help you. There are many many articles under this link.
Thank you for sharing. I truly believe sharing is caring. It is so wonderful to be able to share with one another. When I feel completely alone I come here. Take Care
https://www.ihelpc.com/about-2/best-friends-start-here/
Dee Ernst recently posted…Prayers for Karen – UPDATES
Hi Karen, I am so grateful to find your website. What a wonderful blessing to have a “new” liver. I have known about my hvc for at least 15 years but was not a candidate for treatment. In 2011 I found out that cirrhosis was present. I did the whole deal was eating well ,good supplements etc. I started a job that has absolutely ruined my health, wasn’t sleeping, on my feet 8 hours a day ,not eating well you get the jist. I don’t know exactly what stage I’m in but I am guessing it is 3 or 4 since I am having the astctes and edema. My problem is I can’t seem to be able to plan affordable foods that are good for me and actually make the meals at home. I am so glad to have found you.
The other problem I have is lack of privacy. I don’t want to receive anything that says Hep C unless I’ve opened the email or private browser. I won’t be able to find you on Facebook too many prying eyes that don’t need to know my personal stuff.
Hi there I completely understand your privacy concerns. If you were to email Karen, you would write to IhelpcKaren@gmail.com.
That doesn’t look bad at all in my opinion, I mean if you were concerned about someone seeing your email. It is a pretty innocent email.
Also if you join Face Book, you can pick any name you like and you can keep the privacy level so that only you can see what you are doing. I know of military personnel who will use a stars name or any name they like.
I had same fears as you. As time has gone on I have realized that I need to get out there to help others. It took me a long time to get there so I understand your feelings. At first I just told my family. It was hard just to talk about it for first 3 months, I just cried. As time went on and I was able to wrap my brain around the fact that I had HCV and was about to start treating, I told my boss, then my co-workers. I was pretty naive back the and did not realize the ignorance about HCV. I was working with scientists and they did not seem to understand what HCV was, how it was contracted, etc. Cancer used to be treated like this, then AIDS was treated the same way. We are almost pioneers. As time went on I became more selective about who I told. Now I have hung back the other way and I do tell people. It is nothing to be embarrassed about. It is a virus, we caught it, we need to get rid of it. I think you are right to be protective of yourself until you are stronger. If you need any help, please don’t hesitate to ask, no one will know who you are unless you want them to know. Take Care 🙂 Dee
I guess I will see who stays and who runs… How do I deal with telling people what I am going through?
Hi there, I gave you wrong email address, so sorry. My A/C is out and along with it my thinking ha ha
You can contact Karen at this email, hang in there, it does get easier. It doesn’t seem like it will but it will.
When I was diagnosed 8 years ago I thought it was a death sentence. I have now been cured for 3 years. While the treatment was very
hard, because…Incivek, Interferon, Ribavirin :), the newer drugs are so much easier, so much shorter in time, much less side effect, less effects on the brain. Please keep in touch, Dee Oh at one point on treatment I just started saying I was on chemo and chose not to elaborate. It is chemo and people seem to understand. Say you are treating HCV and they ask why? It all depends on you and how much you want to share.
ihelpc.com@gmail.com
Just entered the LoSo world due to my husband’s recent dx of CHF & Chronic Kidney Disease. A couple of days ago I visited our local GFS (Gordon Food Service) store and found several no salt-no MSG seasonings: Zesty Country, Mixed Herbs, Lemon-Pepper, just to name a few. The containers are a bit large, average from $11-$15. I bought small zip-lock craft bags (just big enough for 1 tsp) and packaged up loads for friends and family. They’re great for restaurant visits since we order everything without seasoning. Also, Bonefish Grille recently changed their menu items. French fries are made from low sodium potatoes and are now all fried without seasoning. All meats are available without seasoning. We’re getting accustomed to our new life-style change and get excited over the little things. Your website has been extremely helpful. God bless..
Hello! Thank you so much for sharing, it is always nice to hear peoples ideas. You never know who it might help. Bless you! Dee
Wow what a great site. My partner had an HE episode 6 days ago, i have just bought him home today. From reading your site this could be the first of many scary visits to the hospital. I just want to look after him the very best I can as the thought of loosing him is just to much to comprehend. I am
Hello there! Welcome! HE is very scary. Many times patients won’t take it. My advice would be to take it after a meal. That way it doesn’t cause as much diarrhea and cramping. There is also an antibiotic that can help. It is very expensive but it does work well. Mainly you are trying to get the toxins out of the brain so the person can think clearly. Ammonia, one of toxins is normally excreted by kidneys. When the liver is not working well then it can’t dispose of it and it goes to the brain. Taking the lactulose draws the toxins into the fecal matter and you know what happens then. Many people think as long as they are going that is enough. It isn’t. Another thing that I have tried is inulin, it is a powder than can be mixed into yogurt. Probiotics also help with the stomach. After I got rid of the virus that was attacking my liver I began to improve, I pray this is the same for your partner. Do you know what his liver problem is from? It could be NASH, or drinking or hepatitis. I hope you don’t mind me asking. I hope this helps a little bit, thank you for writing in. Sorry if I rambled too much. I am going through a “there but for the Grace of God go I” moment
I have a friend who is in denial about his health, won’t take the lactulose won’t take the propranolol. I guess he thinks the HCV is not killing him. He has been in hospital many many times in 2 months but doesn’t follow anyone’s directions. Now, in addition to ascites he has fluid in his lungs. They just took out two liters and there is more. I am beside myself with grief over this. His family also in denial. Sorry, just thinking that if he doesn’t make it everyone is going to blame her for not letting them know.
Hi I’m so glad I have found this site….I have been diagnosed with hep c geneo 3 last June. ..I am living in the UK. …I am out of my mind I am unable to tell any family members or friends. ..I was infected with my ex partners blood as he tried to kill both of us by stabbing me while he had tried to cut an implant out of his groin which he had inserted to stop his drug habit and slashed his wrists and neck they where only superficial but it was enough to infect me…I took him in after we split 20 years ago….I seen he was on his downs and brought him into my home….I was at that time having treatment for breast cancer and felt very vulnerable. ….I don’t know where to turn. I presented all the symptoms of HCV to my G.P …who dismissed it and put it down to my mental health prescribed heavy anti depressants and he told me I was paranoid. …Living this lie is killing me. X
You’ve had a really rough go of it. The story is incredible. I must say that taking your ex back in after 20 years was kind thing to do, but this person needs some help! I hope that you can make some strong priorities. First of all, maybe he has calmed down now. But the first thing is to take care of yourself. Tell your doctor that you would like to know if your liver is damaged, and when you can start treatment.
I hope you find a good support system to help you during this time… and don’t let fear of shame keep you from talking about what you’re going through. You need to stay connected with people who care!!
xoxo Karen
G’day Karen. I live in a small Australian town and have to travel a couple of hours down to out state capital for a transplant. Do you have any information on how to tell Grand Children that their Pa is going to have a bit cut out and replaced by a liver from a complete stranger?
Richard,
First congrats on getting listed. I hope everything is going well there. My grands were 9 and 11, and were upset at first. They actually cried when they learned I had liver cancer. It was a sad moment at first.
They were spending the night, so I made it a special time. We made cinnamon toast with sugar and butter while I played a video of people competing in the World Transplant Games. Then I told them that all of these people had been very sick, and now they got a new organ and were going to be ok. I also told them that it was a scary surgery, but my faith was strong. I told them that by faith, I was going to be training for the Transplant Olympics. So I rode my stationary bike and took walks to the mailbox. Then 2 years later, I won a gold medal.
My kiddos went with me to the initial work up. We got a hotel for the 3 days of testing. They swam and relaxed while I tested. They didn’t come to the hospital because I was only there a few days.
So to summarize, I used the same language of hope and faith that I always use with them. I was realistic, and they saw how sick I became, yet we had a lot of fun that year. I wanted them to have good memories in case I didn’t make it, you know.
I hope you’ll keep me posted on your transplant as it goes. I’ve got a blog about this and I’ll link it here. I know many good people in Australia who have had transplants! http://www.ihelpc.com/time-to-get-listed-for-a-liver-transplant/ or you can find it on the racing flag that says Start Here on my home page. xo
I look forward to hearing from you!