When You Don’t Look Sick with Hepatitis C: how to
Some people actually have the words “I told you I was sick” engraved on their tombstone. That SO would be like me. From the age of 30 on I was telling my doctors that my food didn’t metabolize well, my body ached, there was dizziness, fatigue, and a bunch of other symptoms.
I honestly felt like a hypochondriac some of the time. They kept prescribing antidepressants, sleep aids, and pain pills. I didn’t want that. I just wanted to feel good. So I wouldn’t take my meds. Then I got in trouble for not following the doctor’s orders. The bottom line is, when you don’t look sick with Hepatitis C, people have a hard time taking you seriously.
In spite of feeling bad, my pride kept me active. I might be sick as a dog, but I would get up and fake my way through the day. Beginning the day with bed yoga helped me move past the pain. That’s a practice I continue today! Exercise made me feel better, but I paid a price. I got jacked up with caffeine just to stay moving.
Napping Does NOT mean Lazy
By evening, I was beyond tired, sore, and hungry. Many times there were activities to attend, so I would go for more caffeine. Family fun with the kiddos, school, community stuff, and work related events were fun to think about. I wanted to be there. So I pushed.
I always came home from work and napped.
Sometimes I took a nap at work before grading papers. If I had an event, I set my phone alarm because I would just BLACK OUT. Then I would jump and get out the door for a sporting event, teachers night, or just a fun family evening.
It makes me feel sad to remember how hard I pushed myself. I gave all that my body had to give and then pushed it to give more. I love my family and had a strong desire to be a good wife and mother. I didn’t want those sweet grandkids to have anything less than full time Nana. Students love teachers to show up for their events. I did a lot of volunteer work. It seemed like my energy had no bounds. No one knew how hard I was pushing.
We find ways to create an illusion of health, don’t we? I ate clean and simple food most of the time. Pizza and cheeseburgers were there, but I was a healthy, picky eater. Food definitely helped support my liver through the first 3 stages of cirrhosis. I used concealers and make up to erase the fatigue.
When You Don’t Look Sick with Hepatitis C: how to
Toward the end, it was hard to hide. Soon, every bump became a major bruise. I fell down, and ran into things. I turned to herbs, and used mega doses of supplements, which bombed my liver.
The last 2 weeks before diagnosis, I thought the stomach bug had bit me. I ate red jello and popsicles to stay hydrated between trips to the bathroom. I napped near the toilet, not realizing that I was throwing up blood, not jello. I withdrew from family so they wouldn’t “catch the flu”.
The funny thing is, I looked okay the day my liver totally failed. I fixed my hair, rode my bicycle, worked in my classroom, and got my teeth cleaned. No one commented on my poor health or appearance. Driving home from the dentist, my feet swelled double. The next day, my doctor sent me to ER.
Being diagnosed with end stage liver disease was kind of validating. A lot of things began to make sense. I reflected back over all the years of pushing my body.
It still brings up a lot of emotions like anger, sadness, and disappointment. When you don’t look sick with Hepatitis C and you’ve spent your life trying to appear normal, it’s okay to grieve. xo Karen
http://www.cbsnews.com/news/fda-approves-first-drug-epclusa-to-treat-all-forms-of-hepatitis-c/
24 thoughts on “When You Don’t Look Sick with Hepatitis C: how to”
Karen you are an inspiration! Be well…”we” need you:)
Thank you Kathy!
Kind words make my day. Inspire.. kind of like breath maybe? We all need to take a deep breath together while dealing with all these health issues. I hope your day is filled with relaxing inspiration. Nerdy me, going for the root word of inspire. lol.
Be blessed,
xo Karen
I can relate to everything you said in this post. Thank you for being so honest about your experiences. It helps to know others are going through the same thing.
Hi!
Thanks so much for taking the time to comment. I can see where a lot of people read, but they may be too shy to leave a comment. I’m totally smiling, not because you are sick and don’t look it. I’m glad we’ve both found someone we can relate to. This really inspires me to know that we connected.
Love you for that,
xo Karen
Hi Karen
It’s been awhile since we last spoke. I don’t get to read to much these days but I can when I find the time.
Myself I dont look sick but after treatment Harvon I’m fee of the virus. Cirriohis stage 4 still there but I can’t seem to look weight. I work extra hard only cause I have things to take care of financially.
I of course need to be screened twice a year for liver cancer which is a pain. I found out I have gallstones which don’t hurt me but they are there.
I developed a rash in my mouth. I thought it was due to dentures which are fairly new . After I saw dentist I decided to do a oral cancer screening. It was free thank god. Now not 100% but she thinks it’s lichen planus. I was told to go to a oral pathologist but at 200.00 a pop I didn’t. I went to family Dr about a rash all over my back from shoulders down to bum . It looked it all over and said are u might have same thing on body.
Now as I think about it they both came about same time frame. So I now wait for a dermatologist it’s been 2 weeks and rash has gone done to my feet. My mouth us the worse. I can’t eat hot food never mind spicy or hard foods.
I was just wondering if u have ever heard of this or experienced it. From what I’m reading the Hep c virus can cause it. It’s autoimmune and I’m not sure what that means but I itch but I plug away every day.
Any thoughts would be great
Take good care
Chris
Chris,
SO glad to see you stop back by! It seems like after treatment, we’re so relieved and then we realize all this other stuff still needs attention. Good for you taking care of your whole body. I had an oral cancer scare too and was so relieved. I’ve had a lot of rash stuff in my day. I’m using some herbal thing a friend made me right now trying to clear up a hot spot. I don’t like the way it’s moving down your back. Will they give you something?
About the mouth thing.. are they offering you miracle mouthwash with Nystatin? I have to use it a lot. Also rinse your mouth frequently with a little salt in some water. Not too much, because of sodium content. Just swish as often as you can to keep it clean. I broke down and bought an oral jet spray thingy. I use it a lot to keep my mouth cool and clean. I need to write about this, because I thought I was the only one who dealt with messy mouth. I’m so sorry. Look for a blog soon. xoxoxo just for you.
My transplant doctor looked at my rashes and agreed with the dermatologist. It’s autoimmune. Cool baths. Elidel 1%. Coconut oil. I’m going to look at the ingredients in my friends recipe for you.
Keep plugging away. I am doing a lot of deep breathing to relax. I’ve heard that helps with autoimmune stuff. I’ll keep you posted. Please drop by any time!
Love you much,
xo Karen
Karen, Your story is much like mine. I started to complain about symptoms to my doctor back in 1997. So he gave me an HIV test, well I didn’t have HIV. I was not diagnosed with HCV until 2013, by then I had cirrhosis. I am thankful I was diagnosed but if I was diagnosed 19 years earlier, I could have been treated sooner and not have cirrhosis now. I’ve looked over all my blood work for the last 20 years, and I had elevated Red blood cells and albumin a couple of times, and my doctors never ordered liver testing. It angers me to know this.
I am trying to be positive, but my life has been difficult the last few years. With my husband having a nervous breakdown and becoming full blown bi-polar, getting divorced, losing my home, filing bankrupt, and then after all that being diagnosed. I think I would have gone insane by now if it wasn’t for my savior Jesus Chris, who has carried me through all of this.
Laurie
I’m so sorry to hear our experience was the same. We spend so many years thinking WE are the ones over reacting. And we weren’t. I searched for symptoms in the late 90s when the internet was starting. “you’ve got mail” on aol. haha. Some wasted years though.
Yeah, I’ve dealt with the anger thing too. It helps to rage about it and get it all out. Then we do the positive thing, and find our faith, which actually helps! It sounds like it’s all falling down around you right now. But you’re like a house that’s built upon a rock. No matter what storms come, your foundation will stand firm. Life is full of adversity and He will carry you through it all.
Love love love to you, xo Karen:)
Dear Laurie, I can imagine how you must feel. Evidently I got it in 1977. I was not well, was tested in the 90’s, the test was negative, by then I had had it for 20 years. It was another 10 years before my platelets fell and I was tested for many things. I was diagnosed with HCV, then found out a month later I had the beginning signs of cirrhosis. I thought it was a death sentence. I could not think, could not breathe, my chest hurt from the anxiety. I cried all the time, it took 3 months before I could talk about it without crying. I learned it takes time for our brain to wrap around any traumatic incident. I understand the feelings. I think we go through a grieving process, it is very difficult. As time has gone on I have realized that maybe it was better I did not find out in the 90’s. I had young children, I had to work. After treating in 2009, I lost my job. I try to think that things happen for a reason. God Bless you for sharing. It helps for people to read about our experiences. HUGS, Dee
Karen, I thank you from the bottom of my heart for your help. What you do for all of us out here is awesome. It does me a great service to know that there are others like me who are going through similar problems and still press on. We just want to be ok, live, love and laugh every day.
Thank you, and God bless your sweet caring spirit with everything you want and need in this life.
Laurie
Dee, How nice it is for your response, thank you. I contracted the virus in 1976, 18, I think anyway. I will never know for sure, but thank God I never was a drinker, I’m sure I’d be in worse shape now.
Laurie
Thank you Laurie, yes I agree with you. I am glad I was not a big drinker. I might not be here now. 🙂 Take Care, Dee
Karen I am thinking of you. I miss talking to you. I am not well. I thought I could stop the lactulose about a week ago. Then I had a double cheeseburger with bacon. Now I am so foggy I can’t think straight. I started back with lactulose. It normally works right away, not this time. Tonight will be 48 hours since I started back. I am hoping that I will soon feel better.
Thank you so much for writing. I am reading everything I can
Much love
D
Dee Ernst recently posted…When You Don’t Look Sick with Hepatitis C: how to
Prayers for you too Dee!
Thank you so much! It was so nice to see your message when I logged in. It really made me feel so good! Bless you, Dee
Thanks for your blog. Another good one.
I was cured from Hep C almost three years ago now; and, even with cirrhosis, my liver is function is quite good. I feel great. But the strange thing is that to most people I appear much the same as did when I was in the depth of treatment and the madness of sleep deprivation. I really should look different now!
I am reminded of my mother who had Multiple Sclerosis half of her life. Her symptoms were largely neurological and renal. She got around quite well and generally looked healthy. A few times after we parked in some place such as airport curbside waiting zone, I — only half joking — asked her to limp a little so that the people watching might realize that she really was handicapped.
Sometimes the most healthy looking people are sick and handicapped inside.
Hi there! Congratulations for being cured! Karen and I were cured about 4 years ago. I agree I look almost the same but I have some small improvements in my skin which I am very happy for. I was also told if I did not get rid of HCV I would need a transplant in 5 to 10. That was 2008. Easier said than done. I think time is what we need to recover. I am so happy for you!
Nice to hear from you, thank you, Dee
I feel the same way people often say oh you look so well. It hurts sometimes because they really dont understand, then they are lowes thay feel you are just too sick to be invited some way. I just want do as much as I can waiting now for 5 years for a liver that I may never get. I look at those years go by and ask will I ever have a normal life again. I just watch my life go by not being able to do much more then I can. I stay positive and do what I can to keep my spirits up. Now they are again making changes to policies for liver transplants. We are all becoming just numbers instead of humans with human desires so that they can say we have the most successful transplants. Is this really fair it makes me wonder for sure.
I’m so sorry to hear you have been waiting so long for a liver. It doesn’t seem fair. I know what you mean about people saying you look good, but you know how bad you feel. I understand. I am very tired. I know how it feels to try to keep your spirits up. It is very difficult. I hope you will get the help you need. Take Care, Dee
HI Karen great post and inspiration for others to get help sooner. I am finally cured of Hep C but I had beginning stages of cirrhosis. I feel so grateful that is all I have compared to what you went through. Aren’t people cruel! I still have to be real careful with what I ingest though. But I do feel better in allot of ways, but tired because I needed to get a 30 hour a week job to help with my income in addition to my online business. Luckily I found a job online editing. I need to keep myself awake at night with dark chocolate and I’m building a tolerance, drinking green tea. So I get tired still but I can do more work now at least. I have to because I don’t have any choice.
I hope you are feeling better with your new liver. But that must sure be a real big difference for you. Let us know. How are the anti rejection medications? I hope not too many side effects. Love, prayers big hugs!
Hi there, thank you so much for sharing with us. Green tea is very good. Drinking water helps our liver as well. Cutting out read meat, fried food, processed food is also helpful. Every morning I drink a protein drink to ensure I get enough protein.
I am sending you Karen’s link for liver loving recipes. She has many many articles. Walking is one of the best exercises you can do, she has an article about that. Thank you so much for writing in. We love hearing from everyone! Take Care, keep in touch! Dee
https://www.ihelpc.com/liver-loving-recipes/
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