My name is Susie and I am one of the moderators here at HepatitisC.net. I was diagnosed with HCV in the early 90's and will share my story at some point in the near future. I wanted to make this post today because I remember being newly diagnosed and feeling terrible. I remember how many people told me that I looked fine and I remember how that made me feel. While it was kinda nice to know I looked ok, it hurt to think that people were devaluing and perhaps questioning just how sick I was. I think many people with chronic illnesses have experienced this mixed bag of emotions. In surfing the web I came upon a letter written by a young woman named Bek Oberin. Bek lived in New Zealand and was diagnosed with chronic fatigue and fibromyalgia, if I remember correctly. She wrote a letter entitled "To Whom It May Concern" explaining to people how she felt. I wrote to her and she gave me permission to change her letter to make it more appropriate for hepatitis C. Here it is: TO WHOM IT MAY CONCERN Having hepatitis C virus, as with any invisible chronic illness means that your life as you once knew it is changed. Just because you can't see those changes doesn't mean they are not there and felt by those of us who live with this virus. Most people don't understand hepatitis C and cannot imagine what living with a chronic illness means. With the hope that there are some who wish to understand, these are some of the things I'd like you to know about us. Please understand that being sick doesn't mean we are not still people with all the same emotions that healthy people experience. Some of us must spend our time carefully so that we conserve what little energy we possess. If you visit we may not be much fun, but we still love and appreciate company. Some of us worry about our jobs, schooling and families. Most of the time we'd like to hear what is going on in your life as well as sharing our lives. Please understand that one can be happy but not healthy. When you have the flu you feel fairly miserable, but we've been ill for years. We can't be miserable all the time. in fact most of us work hard at not being miserable. So when you speak with us and we sound happy, it means we are happy. That's all. It doesn't mean we are not sick, in pain and extremely fatigued, or that a miracle cure has been found and we are all healthy once again. Please don't say, "Oh you're sounding better!" We are not sounding better, we are sounding happy. Feel free to remark about our happiness. Just don't assume that it means we are better. Please understand that being able to participate in an activity for 15 or 20 minutes, doesn't necessarily mean that we can participate for 30 minutes or an hour. It's quite likely that doing that 15 minutes has exhausted our resources and we may need time to recover. Remember the last time you played a swift game of tennis or softball. You couldn't repeat that feat over and over again. This applies to every thing we do. Please understand that chronic illness is variable. It's quite possible that one day we are able to walk to the park, or shop in the mall, while the next day we may have no energy at all. Please don't say, "But you did it yesterday." If you want us to do something, just ask and we will tell you if we are able. If it is necessary to cancel an appointment with you at the last moment, please don't take it personally. There are days when we feel great and all of a sudden that changes and the fatigue is overwhelming. Please don't ask us how we got this disease. There are many ways to acquire hepatitis C. Some of us made a foolish choice to experiment with IV drugs when we were young and invincible. Some of us were born with hemophilia and needed to use blood products to stay alive. Some of us were given blood transfusions before 1992. Some of us are veterans who fought proudly for our country and some of us are kidney dialysis patients as well or may have received an organ transplant years earlier. Many of us have no risk factors at all and do not know where we got hepatitis C. If we wish to share our medical history with you, we will. Please don't be afraid to hug us, kiss us or hold us. You cannot "catch" hepatitis C from us unless there was a mixing of our blood with yours. Please understand if we tell you that we have to sit down, lie down or take our meds, that we have to do it now. Chronic illness doesn't wait for a convenient time. It does not feel good to have to stop what we are doing to tend to our health. Remember that we didn't ask for this. We mourn for our lives before illness, when we were free to pursue all our hopes and dreams. We hope you understand.
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This month we're talking about how pets can affect our health condition. If you have a pet, tell us how your pet helps you cope with hepatitis C. Don't have a pet? Then tell us what comforts you when you aren't feeling so great.As you know, the hep C community supports one another in staying healthy and comforting one another when things go awry. Part of staying healthy is engaging in regular self-care. What’s self-care, you ask? Self-care is all about looking after and taking care of yourself – in a healthy way. In fact – regular self care has been shown to help people improve their mental health, manage stress, manage brain fog, and more energy. It can be hard to put yourself first and attend to your own needs – and so we want to help support you. That’s why we’re taking the next 14 days to celebrate being #SelfCareAware. We’ll be sharing easy ideas on how you can do it and checking in to remind you! In the meantime, tell us: What do you do on a regular basis to practice self-care? Share by replying below!So I am 33 years old I was diagnosed with hep c. i do not know if it is genotype 1 but i will confirm. i am asymptomatic, i feel healthy look healthy. i have blue cross and blue shield health insurance i live in PA. my infectious disease doctor prescribed me harvoni. my insurance wont pay for it. They denied me for the drug saying i had no symptoms nad my viral load was not high enough. HELP ! I would like to cure this before i do get sick . Any suggestions? ThanksI got the deiaese from a tatoo my life has been nothing but lies people dont understand hepc they shun you talk about you its been really bad for me i wish there was better awareness of hepcI was told that I had hcv acute phase in 2000, was high risk iv user I Was 18 years old and thought my life was over. The Dr told me that there was a 20% chance to clear it and not have it turn to the chronic phase. I was ashamed and hid it as well as I could living in a small town with under 1k pop. That Dr also told me that the damage was done that my life expectancyncy was 40. I never followed up. In 2002 I was incarcerated and during reception I told them what that Dr had told me. They ran some liver tests at the same time that they checked tb and hiv. When results came back they told me that I had a fatty liver but that other than that everything was clean,no signs of hcv. That was the news I wanted so I never looked back. After I was released in 2003 I drank pretty heavy for 3 years but no drug use. I now had children and started to make some better decisions. Around this time I was about 25 and I began getting white discoloration spots on my back and shoulders and reddish blotches around the top of my elbows. It would come and go but never completely leave or maybe it did but I couldn't tell because of lost pigment. I assumed it was a sweat issue because I hardly sweat at all. At 29 I got a red bump on the crease of my thigh and groin that I figured was a ingrown hair but it never healed I went and had it lanced at the er the Dr said it would be fine but that he was sending for a biopsy. Next day these ppl are blowing me up sayin that it's cancer and I need immediate surgery for removal .ended up being a kerotosis that had just turned squamous cell carcinoma. Was told the spot I had it was rare do to not much sunlight. After removal he told me he was gonna get it tested because hiv and hpv he noticed previous were possible risk factors. When he came back he said it was a hpv type. Around this time I also began having some issues. I noticed that my testicles had began to start rising up and more internal. I got a tattoo and the red ink locations took over a year to completely heal. My toes are starting to go numb and when I sleep my arms and hands always are going numb. Later found out that the tattoo haD MRSA. I also on my thighs I would get occational bumps that looked like a boil or a spiderbite. They never had much fluid in them tho. Ended up being cellulitis. I also began getting more frequent abscesses between my thighs, I always assumed galding. One of those absecces got huge and ran once again on the Crease where my thigh and groin meet.I went to er was admitted, it ended up being cellulitis with Mrsa and the abscess was about 7 inches by 1.5 inches in size. Had surgery to have it removed and was on a antibiotic vancomycin to fight off the mrsa. A day and a half later I'm experiencing renal failure from the medicine. Dr then told me I needed checked for hiv or cancer,i passed the hiv test again but during the cancer screening they noticed I had enlarged lymphnodes. So I'm following up for two months telling him this exact same story. And after my lymphnodes began to shrink he said I was good. I asked him what I should do next and it's like they don't listen to what I say. He said no need to follow up. So here I am .No hiv but it's still takin crazy long times for anything to heal. I never have had a pcp I have 6 children and not the best job with I guess ok insurance. But every time I go to these Dr's I end up getting sued garnished or some blemish on my credit report. Have no sick days. No points available. And without a Pcp it seems impossible to get fmla paperwork filled in a timely manner to where I don't have to fear being terminated from work trying to get proper guidance. Now I've noticed that fatigue is getting worse . I'm starting to get hives on my back and stomach any time that I work hard or during intimacy that itch insanely bad. And I've also noticed that I'm having short term cognitive issues. Now erectile dysfunction is becoming a issue. My voice has become permanently hoarse it seems. I know I want help and I know I have responsibilities. I'm prepared to spend to get this treated whatever it is. I just wanna know how to skip the dealing with uninformed or unconcerned ppl and get lined up with someone who can get something put into place quick to where I don't have to Miss a lot of work and if I do that I'm not gonna freak out over some paperwork mishandled and losing my job.I need the job to pay for the treatment, otherwise I would just quit. I want to at least try to live longer and healthier.My fiance's insurance (meedicaid) will not pay for the treatments. What can we do so that she can get the medication?
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