Club Mystic's blog: "TO MY FU-FAMILY"

Letter to People Without Hep C Current mood: calm Category: Life Letter to People Without Hepatitis C Hep C aka The Dragon I did not write this letter but it applies to the majority.... D. W. Having Hepatitis means many things change and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me... Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends and most of the time I'd still like to hear you talk about yours too. Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain or extremely tired or that I'm getting better or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you. Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, Hepatitis may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive. If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Hepatitis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me, then I might not get to see you... and as much as it's possible, I need you to understand me. I just want to thank all of you for being here for me and understanding that I need to know you are there, but that there are times that I don't want to talk. I feel pressure from some of you, but I cannot "hold your hand" or "babysit". This is one fantastic group of people, and you mean the world to me, but I need for you to know what I am dealing with every day, and will continue to deal with on top of everything else that I must do. Thank you for reading this! I know it was long. I love you all!

Well, they just sent me home from the hospital...no way will they do any sort of surgery cuz my b/p is 96/48...I swear I may never have the stupid biopsy! doc visit on Friday! Cin Much thanks and love to all for all the support and leveling love today!!! (((huggz)))

To help us - Please copy and paste this into your profile or pass on Hep C Aware - ARE YOU? Hepatitis C is a systemic blood borne virus that primarily attacks the liver. It is spread by blood to blood contact 1 in 50 Americans have HCV - 2 out of 3 do not know it. THERE IS NO VACCINE FOR HEPATITIS C Risk factors! Have you: received blood, blood products, or an organ transplant prior to 1992? ever shared drug paraphernalia? injecting or snorting ever been stuck by a used blood needle? been on kidney dialysis? had a tattoo or body piercing? had sexual activity that involves contact with blood? shared personal care items(razors, toothbrushes, etc.) with other people? been incarcerated been in combat (especially vietnam veterans) If you answered YES to any of these questions, you may have been exposed to the Hepatitis C virus GET TESTED!

This article contains excerpts from the booklet “But You LOOK Good: A Guide to Understanding and Encouraging People with Chronic, Debilitating Illness and Pain!” Surprisingly, more than 125 million Americans have at least one chronic condition. Nearly half have more than one. An illness or injury is considered chronic, when it lasts a year or longer, limits activity and may require ongoing care. Not everyone with a chronic illness has the same symptoms or degree of symptoms. Some have mild complications and with a little adjustment in their diets or schedules, they can lead a pretty “normal” life. Some have to make bigger changes, sacrificing various activities or their work situations in order to contend with their conditions. Others become so ill they are unable to work at all and struggle just to meet life’s daily needs. Just about every one of us has experienced being so sick we had to stay home from work or school, because we were too sick to go. We hate being sick, because the time ticks by, the work piles up and we cannot do anything about it. We gripe and moan that we “don’t have time to be sick!” even when it has only been a few hours. It is just plain miserable to be sick, in pain and debilitated - nobody enjoys it. Often when we come across someone who says they have been sick and in pain for a long time, we might think they are either exaggerating or they are not doing something about it. After all, when we got sick, we got some rest, took some medication and were soon back on our feet. Moreover, when we were sick, we were pale and droopy, but they often look “perfectly normal.” The truth is, most chronic conditions cannot be seen with the naked eye, but nevertheless are persistently keeping the person from enjoying life the way they once knew. For instance, a person can battle extreme fatigue, even though they may appear healthy and well. Just the same, a person can have spinal damage and excruciating pain, despite the fact that to the onlooker the may look strong and able. The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they “look good.” Sadly, this makes the person feel as if they are being called a liar or a wimp. This can cause great strains on relationships between friends, family members and spouses. Ironically, those with chronic conditions would like nothing more than to gain complete control of their lives and not have to adjust to any limitations at all! Nonetheless, their bodies do not always cooperate with their desires, no matter how much they want it to. Regrettably, a travesty occurs when the person not only has to contend with no longer being able to do what they love to do, but also has to battle for their loved ones belief, respect and understanding. While the person with the illness/pain is mourning their loss of ability and freedom, others often accuse them of just being lazy or malingering. We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing their situation or trying to pull the wool over our eyes, because to us they “look fine.” After all, when we rebut what they are telling us with, "But you LOOK good," our friend really hears, "But, I don’t believe you, because I can’t see it." Frankly, it is impossible for us to be compassionate, until we have acknowledged there is a situation for which to be compassionate! In other words, how can we say, “I am sorry you are sick,” when we are always saying, “I do not believe you are sick, because you don’t look sick?” People with chronic conditions do not want to give up! They make efforts to laugh, smile, look their best and enjoy life, even though they know they will pay dearly for it. Because of this, we should not confuse their endeavors to live life and be positive, with assuming they are feeling well or doing better. Instead, let us commend them for their incredible courage, perseverance and persistence that make their painful disabilities seem invisible to us. ### This article is an excerpt of the booklet “But You LOOK Good: A Guide to Understanding and Encouraging People with Chronic, Debilitating Illness and Pain!” This booklet explains how a person can be damaged by an illness and/or injury on the inside, but still “look fine” to others on the outside. It gives detailed suggestions of “what not to say” and explanations as to why. In addition, the booklet provides many examples of “what to say” to be an encouragement and offers practical “ways to help.” For ordering information and to read more articles written by Sherri, visit The Invisible Disabilities Advocate at: www.InvisibleDisabilities.com Please contact IDA for permission to distribute or publish this article.

50 Ways to Encourage a Chronically Ill Friend Reprinted from Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend By Lisa Copen "A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world." ~Lois Wyse Ask, "What events in your life are changing and how are you coping with the changes?" Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice. Put meals in disposable containers and attach a note saying "This doesn't need to be returned." Add stickers to envelopes for a cheerful touch. Arrange for your friend's kids to have a night with your children. Don't make a person into a project. Ask, "Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?" It makes one feel good to know that her experience can offer someone else hope and that God still has a purpose for her life. Wash his car and put a little note inside for him to find later. Remember important anniversaries, both the good and the bad. No one else will. Ask, "Do you want company the day that you wait for the test results? I could come over for a couple of hours." "No matter how little you have, you can always give some of it away." ~Catherine Marshall Just listen . . . until it hurts to not say anything. And then listen some more. Ask her, "How do you feel God is working through-or despite-this illness in your life? I'm interested." Ask, "What do you wish people understood about your illness?" Don't make her feel guilty about things that she cannot do. Treat her to a gift of movie rentals via postal mail through a service ($7-15 a month). Ask, "Would you be comfortable with having your name on a prayer list, so that others can pray for you?" Don't assume. Instead of saying, "I will pray for you," say, "I'd like to pray for you right now, if that's okay." Mop the floors. Ask if she would be interested in writing something for the church newsletter, maybe even about the subject of living with chronic illness. Buy a brightly colored umbrella as a gift. Ask, "Do you have an errand I can run for you before coming over?" Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it's a good day or a bad day. Don't say, "So, why aren't you healed yet?" or "I wonder what God is trying to teach you that you just aren't learning!" For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says "For when you don't feel like doing dishes." Get her a pretty box to keep all of her notes of encouragement. Remind her to get it out and read things when she is feeling down. Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she'd like you to take care of it. If she says you can, be firm but not rude. Don't embarrass her by making accusations of discrimination or by making a scene. Ask, "Would you be interested in a prayer partner from our church?" Purchase matching coffee mugs for you and your friend, and then commit to pray for one another each morning while using them. Say, "While you're in the hospital I'd be happy to take care of your pet." Don't tell her about your brother's niece's cousin's best friend who tried a cure for the same illness and. . . (you know the rest). Find out which charity is most important to her and then give a donation in her honor. Ask, "What are your top three indulgences?" and then spoil her soon. Hold the door open for her. They are heavy! Don't tease her and call her "hop along" or "slowpoke." Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, "A man's spirit sustains him in sickness, but a crushed spirit who can bear?" Say, "I know you must need someone to just vent to occasionally. I may not fully understand how you feel, but I'm here to listen anytime." Ask your church youth group to come over and clean up the yard during seasonal changes. Don't ask her, "How are you able to make it financially?" If she wants to share a burden she will. Ask, "What would you advise me to look for in a new doctor?" If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she's feeling particularly good that day, she may not want to park in the "blue space." Don't be disappointed that you'll have to walk farther. Don't gossip about others. She'll wonder what you say about her. "Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen" (Ephesians 4:29). Proverbs 25:11 says, "A word aptly spoken is like apples of gold in settings of silver." Be kind, gentle, and respectful. Accept that her chronic illness may not go away. If she's accepting it, don't tell her the illness is winning and she's giving in to it. Don't say, "Let me know if there is anything I can do." People rarely feel comfortable saying, "Yes, my laundry." Instead pick something you are willing to do and then ask her permission. Try the coupon in back! Ask her to share her testimony at an event. Buy a magazine subscription for her on her favorite topic. Plant a rosebush to view from a window. Understand that you don't need to know all of the details about the illness in order to be helpful. He'll share with you what he's comfortable with you knowing. Don't ask, "Why can't the doctors help you?" or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures. Avoid having gifts be "pity gifts." Just say, "I saw these flowers and their cheerfulness reminded me of you." Send tapes of church services your friend misses to her with a copy of the bulletin and a note. If she doesn't have a cordless phone, get her one. Phone headsets are also nice.

Laugh! Let's face it. . . chronic illness can have its humorous moments if we look for them. You know you have a chronic illness when... You understand all the medical terminology discussed on the T.V. show Grey's Anatomy. When you hear the term "Club Med" you automatically think of the hospital. You ask your child to open the "child-proof" bottles of medicine because your hands are too sore. Your medical records have to be transported on a cart. To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial. Your favorite Oprah program is when Dr. Oz is on. To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet. When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life. Your spelling has improved dramatically, especially on words like "fibromyalgia" and "osteoporosis." Or you've been "Around the World in Thirty Minutes" with CNN's Headline News 57 times in one sitting. You have a panic attack in public and say, "Praise God this is only the fourth one today!" You're invited to the wedding of the gal who works at the hospital lab. You're child thinks watching you do injections of medication is "cool." You have a flashback and don't know what happened and can honestly say, "I don't know where I was or what I was doing but I'll make something up if you'd like." Copyright, Lisa Copen, Reprint permission granted if the following is included: Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com

Top 10 things NOT to say to a chronically ill person See the Rest Ministries/HopeKeepers T-shirt with this saying on the back! 10. You can't be in that much pain 9. Stop being lazy and get a job 8. You just want attention 7. Your illness is caused by stress 6. No pain. . . no gain! 5. It's all in your head 4. If you just got out of the house... 3. You're so lucky to get to stay in bed all day. 2. Just pray harder 1. But you look so good! Copyright, Lisa Copen, Reprint permission granted if the following is included: Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com