Chronic Illness Articles

April 14, 2010

5 Priorities After a New Illness Diagnosis

by Lisa Copen

I remember the day my life shifted dramatically. I had had weeks of symptoms of swollen joints and inflammation beyond anything I’d ever experienced or even knew existed. My doctor called my place of work and said the rheumatoid factor was positive, which meant that at the age of 24, I most likely had an illness called rheumatoid arthritis. I bravely asked her “On a scale of 1 to 10, 10 being normal, what will my life be like?” She avoided the question, not wanting to give me a specific number. But I like to know what I’m up against and so when I asked her again she reluctantly responded “If you are lucky, perhaps a six.”

Now I knew: at the age of 24, my life would perhaps never return to where it was “before illness.” The word “normal” would be redefined. Simple activities like staying out late with friends, driving my car, sitting on the sand at the beach, or carrying a cup of coffee, would become an event and sometimes one I would be unable to complete. The carefree attitude and lifestyle that I had lived would always be overshadowed within the fog of chronic disease.

Recently, I received an e-mail from a woman who I went to small high school with of about 300 students–over 25 years ago. She had recently been diagnosed with rheumatoid arthritis, and while surfing the Internet to find information and encouragement, she stumbled upon Rest Ministries website and discovered that I was the founder.

We exchanged e-mails a few times and it is my hope that she found them encouraging. When I reflect on what I would’ve liked to have heard from someone who has lived with a chronic illness for years, upon my new diagnosis, these are the five things I find of most value to pass along.

[1] Contact the national organization or foundation that supports people who live with your chronic condition and explain to them that you have recently been diagnosed and would like their most basic information for someone with your illness. They may send you something in the mail, or direct you to your website. The important thing is to sign up for a membership to be on their mailing list.

Although you might feel as though you have not yet accepted the fact that this illness may be a long-term part of your life, it is important to go ahead and sign up for a membership to be on their mailing list. You can always toss the information or save it for later when you are ready to emotionally process it. But you will find that they will have the most current and objective information regarding scientific research and treatment options. As your doctor suggests medications for you to take, and you are reading the long list of side effects–and maybe questioning their judgment–these organizations will be your best source of information.

[2] Read about your disease, but know when to stop. Unless you have some rare disorder, you will find there is no shortage of information about your illness through millions of books, websites, podcasts, magazines, and more. It’s wise to glance over health and illness organization websites so that you have a good selection of credible resources to go to when you are reading for additional information.

You will want to know what some of the symptoms of your disease are so that if they do occur you will be aware that it is part of your chronic illness and not a separate chronic condition. However, don’t be tempted to try to read everything you can get your hands on, as it will simply depress you! Many of the symptoms that people describe may not actually be a part of your illness experience. You don’t want to get too depressed or discouraged over things you may not ever have to deal with!

[3] Don’t lose hope. As with my illness, rheumatoid arthritis, and most others, there are daily scientific discoveries that can change the of the disease. I have lived with rheumatoid arthritis for 16 years and just recently had four joints replaced in my left hand. My medical team, which includes a hand surgeon, rheumatologist, and physical therapist, all have commented that they rarely see these kinds of surgeries anymore due to the new family of drugs in the last 10 years that has slowed down the progressiveness and destruction of the disease.

Even if there is not an immediate cure, as we scientifically grow closer to being able to know our exact DNA, we will be able to pinpoint which medication will best treat our disease, without having to jump from one medication to another, losing months and years sometimes of our health, in order to find which one works best. Hope and a positive outlook will have a profound effect on your disease and your life. So don’t give up and assume that your illness will be disabling.

[4] Think about who you would like in your life to be able to talk to about what you are emotionally and spiritually experiencing due to the recent diagnosis. The person may be someone you meet in an online forum for your disease, it could be a pastor, mentor, counselor, or even a good friend who is able to listen without trying to fix it. The most important thing is that you have an oasis where you can share what you are experiencing without feeling like you may be judged or where you will receive ignorant comments such as “no pain, no gain.” Check out your local support groups for your illness, or other support environments such as HopeKeepers, which is a unique small group Christian support environment for those who live with illness or pain.

Also, consider your personality and how you are best encouraged. Would you feel most refreshed by sharing what you are going through with just a friend, one-on-one, at a coffeehouse? Or are you homebound, and signing onto a website every day to receive encouragement and prayer would be beneficial? Remember, whatever works best for you at this time, may not best meet your needs in six months, so do not feel like you are stuck with a particular group or mention. Be willing to try new forms of support to find which best works for you.

[5] Ask yourself “What foundation do I have in my life that will help me through the difficulties that I will be facing?” Even if your illness does not progress rapidly, the daily aches and pains, as well as the emotional roller coaster and spiritual “why?” questions you will have, will leave you searching for a deeper meaning in life than simply solving your problem with a cup of hot tea. As a Christian myself, I honestly do not know how people live each day with a chronic exasperating illness who do not know the Lord.

During those times this is what holds me together: knowing that my pain is never wasted; that God is ultimately in control and none of my circumstances surprise Him; and that He has a plan for my life despite the limitations I face and the goals I have that I may never meet. If you are not a spiritual person, when you are facing those middle-of-the-night-blues I encourage you to look up any Bible websites like Bible Gateway and read the Psalms. You may be pleasantly surprised to find that most people who live during biblical times face hardships, depression, doubts, and yes, illnesses.

Feeling overwhelmed and misunderstood? Don’t miss Lisa Copen’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com and learn why you feel the way you do and what you can do about it to make living with a chronic illness easier.

So to summarize, choose your information wisely, set personal boundaries for how much information you will read, keep hope, find a support system, and then search for that which will get you through the darkest of times when the information and people you have relied on disappoint you. You must discover a purpose in the pain that is greater than that which our world will tell you. Don’t ever put life on hold. As the late John Lennon once said, “Life is what happens to you while you’re busy making other plans.”

Feeling overwhelmed and misunderstood? Don’t miss Lisa Copen’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com and learn why you feel the way you do and what you can do about it to make living with a chronic illness easier.

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July 16, 2009

You are Too Young to Be That Sick!

Typisches Röntgenbild einer Rheumatoiden Arthr...
Image via Wikipedia

At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.

Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional.

They quickly threw comments about such as “You’re too young to feel this bad!” Most people were confused about the difference between rheumatoid arthritis and typical degenerative arthritis that our grandparents may suffer from. They ignorantly said things like, “There is no way that you can have arthritis yet.” Those that did try to offer sympathy compared my fatigued and pain to their sports injuries. “Yeah, I have some arthritis in my knee from football. You just have to keep pushing through the pain.” It wasn’t unusual to see their comments accompanied by the wave of their hand or their rolling eyes.

When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life. Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.

I did my best to make well thought out decisions, each of them based on thorough research, some instinct, and of course, “worse case scenario” situations. So when I heard someone flippantly tell me, “You’re too young to be diagnosed with that illness” it felt like a slap to my intelligence. I recognized it as a passing ignorant comment, but it it my heart deep anyway. Did they assume that I was ignorant or that I too easily accepted the doctor’s diagnosis? They comments implied that I wasn’t being assertive enough and that I needed to go back to the doctor to get the “real” diagnosis (of an illness that could be cured in a few weeks with just a pill.) I couldn’t really be that sick, after all, because I “looked so good.”

Laurie Edwards, a woman who grew up with a chronic illness as a child is the author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ In her book she explains, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy – fear, ignorance, intolerance, to name some.”

The saturation of advertisements on television and in magazine for prescription medications has helped legitimize some illness, such as rheumatoid arthritis and fibromyalgia. There are downsides, however. For example, everyone considers her self an expert on the, plus they make their assumptions about how well the drugs work based on the ads. The advertisements show people with debilitating illnesses (healthy models, actually) who are astonishingly now able to water ski or join their kids on 300-foot water slides. While a certain percentage of people may experience remission, the majority of us are happy to be able to get up out of bed without assistance, get dressed, and drive to the grocery store. Ads and commercials fail to alert people that though an illness may be temporarily controlled, they are usually associated with immense daily chronic pain.

With any chronic illness, most of which are invisible illnesses, there will be people who will be skeptical about how much your life is impacted by your condition. When you cope with an illness while in your twenties or thirties, and you “look healthy” they will have even more hurdles to jump over to get the fact that for you to feel better requires more than an attitude adjustment or a daily walking regimen.

Instant download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you signup for HopeNotes invisible illness ezine at Rest Ministries. Lisa is the coordinator of Invisible Illness Awareness

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July 13, 2009

10 Reasons When it Makes Good Sense to Fire Your Doctor

Police Clipboard showing several compartments ...
Image via Wikipedia

by Lisa Copen

We will never find the perfect doctor, as they are all human and none of them are perfect. It comes as no surprise to most of us that they call their profession “the practice of medicine.” One of the leading causes of death and injury in the United States is medical mistakes.

The Institute of Medicine calculates that, due to medical mistakes, anywhere from 44,000 to 98,000 people actually die in hospitals in the U.S. each year. This is more than from motor vehicle accidents or breast cancer.

Regardless of whether you are generally healthy, or live with a chronic illness, you still need a physician you can trust. Though an occasional small mistake may occur, it is especially important that you have a doctor who is eager to be part of your medical team for both short-term and long-term treatment.

Are there some sure signs you shouldn’t listen to your doctor and you should seek a second opinion, or maybe even shop around for a new physician? Definitely!

1. Your doctor does not listen to all of your symptoms or ask questions about them. He is quick to write down his interpretation when you have not fully been able to explain yourself.

2. Your doctor is determined to prescribe medications that have just been approved by the F.D.A., even though you are hesitant about trying something new. He doesn’t explain what the medication will treat, and why it’s important for your condition. He doesn’t explain short or long term side effects or any plan to get you off of it. Promotional items for these medications are visible around the office, from notepads to clocks.

3. Your doctor seems to know a lesser amount of information about your condition that you do. You often feel like your appointments are just times when you show up and inform him of your well-being and what is new about your condition, and he takes notes.

4. Your doctor appears to lack confidence about his ability to care for you effectively, seldom giving you medical advice or directions. Instead, he seems to tell you to do whatever you believe is best or asks, “Well, what do you think we should do in this case?”

5. Your doctor is quick to order tests or procedures that could impact your current health or your chronic illness in a negative way. He forgets that intrusive procedures that may be minor for some people could cause set backs in your illness. The best physician always keeps your whole body and condition in mind, not just the part he specializes in.

6. Your doctor seems to give you that look like he is humoring you. When you describe something you read, or ask a question about a new treatment you have heard about, he looks at you with skepticism and a smile and then writes some notes. It feels condescending.

7. Your doctor isn’t open with you about the medical records he has kept about you. When you request copies of your records, he may be willing to fax them to another physician but seems to try to avoid you getting them into your hands. One reason it’s vital to be aware of what is in your medical records is in case you submit an application for disability aid at some time and social security disability review doctors wish to examine your records.

8. Your doctor is never available when you need him. When you have an emergency he cannot get you in for an appointment immediately. Your prescriptions aren’t refilled on time. He doesn’t call you back when you have an urgent situation and must page him.

9. Your doctor is doubtful that you are having the severity of pain that you describe to him. He is hesitant about prescribing you pain medication, even though your pain level justifies it and you have proven to be a responsible patient with your medications.

10. Your doctor is never open to consulting other medical professionals or faxing his notes over to your other physicians. He thinks he can solve all of your medical needs and feels threatened when you want to consult with another source, specialist, or someone else on your medical team.

A good doctor will listen to you as much as possible, take good notes, explain medications, and make you feel like you are part of your medical team in treating any conditions or symptoms you may have.

We may never find the perfect physician, and we may visit a few doctors who have been referred to us before we find the best fit for our medical needs and a good personality fit. But don’t sacrifice your well-being simply because you are afraid of hurting the feelings of a doctor by leaving him and seeking your care somewhere else.

Read Lisa’s newest book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com Subscribe to a great weekly ezine HopeNotes and download free 200 Ways to Encourage a Chronically Ill Friend. And tune in to Lisa’s weekly podcast at Hope Endures Radio at the web site. Lots of support is available.

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July 10, 2009

7 Outdoor BBQ Planning Ideas When You Are Ill or Tired

The grill saga
Image by kristiewells via Flickr

Whether you plan to serve steaks or hot dogs, having friends over for an evening of fun in your backyard doesn’t have to be overwhelming. Just because you may have a chronic illness doesn’t mean you have to stop entertaining. Here are seven quick tips to entertaining outside without the fuss.

It’s fun to look at magazines that have perfect patios all prepared to entertain guests, but go easy on your self! Here are 7 quick ways to have a fun backyard BBQ bash.

[1] Invite your guests with an emailed invitation service online. It’s fast, you can send it out to everyone in minutes and they can respond immediately. They can leave a comment or see who else is coming. Another perk is that you can list any item that would be helpful for other people to bring and when they RSVP they can choose one or more. It doesn’t have to be just food either; it can be yard games (remember lawn darts?); extra chairs, special music on an ipod, or even paper plates.

[2] To clean up, focus on the outside. You can avoid people trekking through the front door if you put up solar-powered tiki torches and some twinkle lights, making a festive path along side the house. Toss any of your junk piles in the house to the back bedroom, spiffy up the kitchen and wipe down everything in the bathroom. Put out room fragrances that scent your house to smell like the beach, dim the lights and turn on a bunch of battery-powered tea lights. They are festive, but you don’t have to worry about flames anywhere.

[3] Bring the inside out. Pull out blankets, pillows, lamps with extension cords, and table cloths to make your deck or patio comforting. If you can do it easily, choose a theme.

[4] For food, decide what foods you could buy pre-made and then make them personalized. For example you can buy bulk potato salad or baked beans. Add chopped up celery, boiled eggs, and then sprinkle paprika on your potato salad. Add big pieces of bacon to your baked beans. For your meat, choose something simple where everyone doesn’t have to have it cooked their way. Ask a spouse or friend to grill, or grill in advance and warm it up on the grill at the end. You can also have an item like salmon. Wrap it in foil with herbs and oils and steam on the grill. Use some smoke-flavored wood chips to keep everyone drooling from the scent.

[5] Use paper plates and utensils. There are lots of bright colors at the dollar stores that will match your theme.

[6] Locate a teenager who wants to make $10 and let her be in charge of all the childrens entertainment. Set up the kids table and let them do some of their own activities, like making home-made ice cream and then having a toppings bar to choose from. Turn on the sprinkler or let them make a simple craft like sand art. If someone is feeling adventurous a treasure hunt prepared in advance is sure to be a hit with all ages.

[7] Skip fancy drinks, and provide a variety of sodas (don’t forget root beer and orange cream soda) and sparkling water. Have juice boxes for the kids. Throw a plastic table cloth over a wheel barrow or other bucket, dump in ice and arrange. Sit out a large self-serve container of unsweetened ice tea with some ice cubes pre-made with black berries and mint leaves inside for a fancy effect.

Lastly, don’t forget to sit and have a bit of conversation. Have fun! Don’t attempt to be the perfect hostess that no one sees. Relax and leave the clean up until the next day.

Lisa Copen is the founder of Invisible Chronic Illness Awareness Week held each year in Sept and featuring a 5-day virtual conference online. Follow II Week on Twitter for cool prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a difference!

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June 2, 2009

5 Steps to Use Twitter as a Pain Log Tool

This article is free to reprint on your blog, ezine, web site, etc. Just leave everything “as is” including the resource box at the bottom. Thank you!

If chronic illness or pain is a part of your life, the odds are that at one point you have been requested by a physician to keep a log about your activities and pain levels, especially what led up to your pain being most intense. He may have suggested that you write down specific activities, your diet and exercise behaviors, and even your patterns of sleep.

If you have attempted to take this on and do it thoroughly, you know that it can be an overwhelming feeling to keep track of all of your activities and still maintain a sense of normal life. He can be extremely helpful, however, to you and your medical team, to have a written record of your activities, diet, etc. to help discover what is it is causing you the greatest pain. Was that extreme flare caused by a minor food allergy, the weather conditions, or that you were up all night with friends?

It is somewhat ironic that while we may find it a burdensome task to record what we are eating, who we are with, how much we slept, and how we are feeling, millions of people are doing this daily on Twitter. They write what they ate for lunch, if they have a migraine, and if they are up at 2 a.m. working. . . and they call it fun!

If you have a chronic illness, Twitter can be an amazing tool to use as a pain diary. This social networking tool has been successfully used to help people maintain logs on their diet, exercise, and even the commitment to stop smoking. Why should we not use it to keep accurate records of our chronic illness and pain levels?

Here are 5 steps to put this into place:

[1] Create an account at Twitter just for your chronic pain logs. If you already have a Twitter account, make a new one, and let it remain private. If you look under “settings” you will see the option to make your account private, meaning that you will have to approve any followers before anyone can see your Twitter account. Since this is private medical information, we recommend not approving anyone. If you are already Twittering this can seem a bit strange because you typically want to increase the number of followers.

[2] You are now ready to start writing your posts. You cannot write more than 140 characters, however, this keeps it a simple task and not too overwhelming. Feel free to use it in any way necessary, for example, submitting more than one post to describe a special circumstance. You can send posts from your cell phone, not just from the computer, so set up this option in your account to make the most of it.

[3] If you don’t know where to start, begin by posting about any major events or behaviors that are not part of your typical day, and how your body responded to them. For example, if you awake feeling horrible, ask yourself has the weather change significantly? Twitter the weather. Are you taking the same amount of medication as you typically do? Were you active or solitary yesterday? Post whatever information may be valuable to you and your medical team at any right in your treatment.

[4] Before you go to a doctor’s appointment, log on to your Twitter account and print out the posts if your doctor would like acopy. Highlight any major changes in your patterns of pain.

[5] If you already use twitter for personal or business reasons, consider using a service that will post to more than one account at a time so that you are regular tweets that share where you are and what you are doing can also post to your twitter chronic pain log without any additional effort.

The market for Twitter applications will continue to grow and there is no doubt that’s those considering medical Web 2.0 tools will come up with some fancy (and complicated) ways to record your pain levels. But for now you can have a thorough log of your chronic illness and pain levels in just minutes at no cost. You can’t beat that!

Lisa Copen is the founder of Invisible Illness Awareness Week held annually in Sept and featuring a free 5-day virtual conference w/ 20 seminars w/ 20 speakers. Follow II Week on Twitter for prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a difference!

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March 27, 2009

Invisible Illness and Friends Who Don’t Get It: What to Do

by Lisa Copen

friends-women1If you live with an invisible illness, you may find the emotions of coping with people’s doubts about it can be harder to manage than the disease itself. Most of us with a chronic illness must eventually accept our condition. In order to live our best life, we need to educate ourselves about the disease and make well-researched decisions about treatment.

But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many relationships.

So, how do you cope with someone you love and care about won’t acknowledge the significance of your disease or even your illness at all? Here are four steps:

1. Go with it. Your life feels very serious right now, but don’t take your situation too seriously when around your friend. Unfortunately there is not a magical talk you can have that will make him instantly change his mind about your health situation. Most likely, the only way for him to rethink his perception of your illness is for him to observe you and your typical activities. Though your illness may be invisible, he may start to witness some visible symptoms. Perhaps you may have some new limitations, like being unable to walk a long distance; and rather than explaining what you can and cannot do, he might just see it.

2. Grow with it. Use this as a time to reflect on your own perceptions of people. When you are standing in line at the store and become irritated because “Surely no one here knows how hard it is just for me to stand!” think twice. Nearly 1 in 2 people in the USA have a chronic illness and about 96% of it is invisible, so the odds are that someone in line likely is experiencing the same chronic pain and fatigue. Also, what situations are your friends experiencing that you don’t understand? A child with a disability, the affair of a spouse, the loss of a job-all are life-altering and the odds are that your friends could use your empathy and support during this time.

3. Get over it. It is easy to obsess over the fact that no one understands what your daily chronic pain is like. Save yourself a lot of grief and don’t do it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don’t understand, soon all your friendships will be tainted. Do not take a friend’s lack of empathy personally, even though it feels personal. You cannot change someone’s mind; you can only control your own behavior, so make certain you have conversations that you won’t regret.

4. Get on with it. No material things in this world can replace relationships you have. If a loved one doesn’t acknowledge your illness, it’s true that the depth of your friendship will never be what it could be. But if the relationship is healthy in other ways, and one worth saving, you can keep it.

The odds are, at some point in your friend’s life, a health issue will occur and suddenly he will have a glimpse into what your life is like. Allow him to feel comfortable coming to you for support and encouragement and don’t use the opportunity to say, “I told you so.”

Go with it. Grow with it. Get over it. Get on with it.

Relationships with those who don’t understand the seriousness of your illness can exist. Be positive, accepting him for what he’s able to give to the relationship, and have reasonable expectations. Someday, this may prove to be one of your most special friendships.

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly “as is” including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio program every Tues and National Invisible Chronic Illness Awareness Week.

If you Twitter, be sure to check out Illness Twitters.

March 20, 2009

Minister to the Chronically Ill: 20 Ways in 20 Minutes

by Lisa Copen

girl-hug-bearRest Ministries, the largest Christian organization that serves the chronically ill, recently did a poll, asking “List some of the programs or resources a church could offer to make it more inviting comfortable” Below is a sampling of the 800+ responses.

1. Send out encouraging emails.

2. Make sure the handicapped stalls in the restroom are functioning and clean.

3. Add padded chairs or cushions to make church easier to sit through. Room for wheelchairs is always a need and don’t forget to include extra places for family members.

4. An open attitude for a support group like HopeKeepers. It would make me feel very special that there was an understanding of needs that are not always visible.

5. More disabled parking, even if they are temporary spots.

6. Educate the ushers that people arriving late may have difficulty walking or getting out of cars and will need some assistance.

7. Have a couple of people who could call chronically ill folks and check on them when they can’t make it to church.

8. When suppers are given, I need help getting my meal or at least understanding from others that I won’t be able to wait in a long line.

9. Be cautious when hugging. It may topple over or hurt a person.

10. Video tape of the service for DVD, don’t just do a live web cast. My computer doesn’t work that well.

11. Make sure that the church doors aren’t too difficult to open or at least have mechanical assistance if they’re unusually heavy.

12. Please don’t tell me that if I really believed and had faith I would be healed by now. And don’t insist how wonderful I look, because I know for a fact that I look terrible and miserable that day.

13. Offer me ways to serve within the church that can be performed regularly, but not on a set schedule. I still want to contribute, but I need some flexibility so that I can do a job when I feel well enough to do so.

14. Provide sermon notes in case I can’t make it to the worship service and want to listen/take notes later.

15. Acknowledge National Invisible Chronic Illness Awareness Week. Rest Ministries has a book list of top 100 Christian books for the chronically ill. Having some of those books in our church bookstore as a display would be a great outreach.

16. Just talk about chronic illness! Mention it in sermons as one of the challenges many people face just like unemployment.

17. Have Christian volunteers from church that will clean house for small fee.  Some have offered to clean my house, but I cannot accept charity yet, but neither can I afford to pay a regular house cleaning service.

18. Help with some of the small costs of providing encouraging books and resources for the church library the chronically ill can check out.

19. Remember there are lots of caregivers in the church–not just caregivers of parents, but spouses and ill children too.

20. Have copies for free of the sermon on CD.

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly “as is” including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio program every Tues and Thurs and National Invisible Chronic Illness Awareness Week.

March 4, 2009

10 Situations When You Should Ignore Your Doctor’s Advice

by Lisa Copen

doctor-clipboardWe will never find the perfect doctor, as they are all human and none of them are perfect. It comes as no surprise to most of us that they call their profession “the practice of medicine.” One of the leading causes of death and injury in the United States is medical mistakes.

The Institute of Medicine calculates that, due to medical mistakes, anywhere from 44,000 to 98,000 people actually die in hospitals in the U.S. each year. This is more than from motor vehicle accidents or breast cancer.

We all need doctors, however, despite their mistakes and when you have a chronic health condition, it is is especially vital that you have a doctor who you feel is a partner with you in your medical care for both the short and long term.

Are there some distinct signals that you should actually not listen to your doctor’s advice, and that you should seek another opinion, or perhaps even switch physicians? Yes!

1. Your doctor is quick to speak and slow to listen, rarely hearing all of your symptoms or asking questions about them. He quickly records his interpretation of what you are saying before you have begun to explain your symptoms or the situation.

2. Your doctor is persistent about prescribing medicines that are recently available. He does not explain what the medication is, why you need it, how will help your situation, long-term effects, or if there is a plan to get you off of it. You can see the promotional items for the medication around his office.

3. Your doctor seems to know much less about your condition that you do. Your appointments consist of you informing him about your condition’s progression or treatment ideas and him taking notes.

4. Your doctor appears to lack confidence about his ability to care for you effectively, seldom giving you medical advice or directions. Instead, he seems to tell you to do whatever you believe is best or asks, “Well, what do you think we should do in this case?”

5. Your doctor is quick to order tests or procedures that could impact your current health or your chronic illness in a negative way. He forgets that intrusive procedures that may be minor for some people could cause set backs in your illness. The best physician always keeps your whole body and condition in mind, not just the part he specializes in.

6. Your doctor seems to give you that look like he is humoring you. When you describe something you read, or ask a question about a new treatment you have heard about, he looks at you with skepticism and a smile and then writes some notes. It feels condescending.

7. When you ask for copies of medical records, he goes out of his way to not get them directly into your hands, preferring to send them only to other physicians. It is important to know what is in your medical records in case you apply for disability assistance at some time and social security disability review doctors want to review your files.

8. Your doctor is rarely available when you need his expertise the most. When you need to make an appointment at the last minute for a special reason, he is not available. He is late in approving refills for prescription medications. His office does not return calls and if you page him after hours for an emergency he doesn’t call back for a long time.

9. Your doctor is doubtful that you are having the severity of pain that you describe to him. He is hesitant about prescribing you pain medication, even though your pain level justifies it and you have proven to be a responsible patient with your medications.

10. Your doctor seems to appear threatened or annoyed when you wish to get a second opinion or see a different kind of specialist. He does not comply when you ask him to fax his notes to another physician who should be in the loop of your treatment. He seems to think he is the only one who can meet your medical needs.

A good doctor will listen to you as much as possible, take good notes, explain medications, and make you feel like you are part of your medical team in treating any conditions or symptoms you may have.

We may never find the perfect doctor, and it may take a while to find someone who is a good match for both our medical condition and our personality. But don’t allow your health to be risked just because you are too afraid to speak out and be assertive about your health care needs.
This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly “as is” including this footer. Read Lisa’s newest book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com Subscribe to a great weekly ezine HopeNotes and get a free download of 200 Ways to Encourage a Chronically Ill Friend. And tune in to Lisa’s weekly podcast at Hope Endures Radio at the web site. Lots of support is available!

February 22, 2009

6 Tools for the Chronically Ill to Making Sensible Resolutions

arthealthywinterby Lisa Copen

Did you make resolutions for the New Year, positive that this would be the year that they would really happen?

– I’m going to lose that extra weight – I’ll really save some money this year – I’ll give people more grace – I will exercise on a regular schedule – I will start some good habits

We all start out with the best of intentions but as March 23rd rolls around we reflect on all the ways we’ve already let our goals slide. It’s easy to feel like we are letting ourselves and those we love down.

For most people, setting goals for the New Year is a regular part of life. Chronic pain sufferers, however, can find resolutions can be exasperating and nerve-racking. Our bodies and health, therefore our lives, are beyond our control the majority of the time. The idea of walking just a few blocks a day may seem reasonable at first, but the smallest change in our illness may quickly prevent us from even walking to the mailbox. Suddenly even the simplest of goals are out of the question.

The list of why we may “fail” at our resolutions even seems justified.

–> I’m going to exercise more . . . And then I have surgery and my illness is exasperated. Even my doctor said to take it easy and not overdo right now.

–> I’m going to get rid of those extra pounds . . . It seems every chronic pain medication I get has a list of side effects that say, “May cause weight gain.” May? They all do!

–> I’m going to start making wiser choices about money . . . Money? What money? I’m barely surviving on what I have!

So how do we move forward when everything seems stacked against us?

First, if you didn’t set any goals in January, give yourself a pat on the back. No universal rule has been broken that said you must start your New Year’s goals in January. The month of January is a time for recovery. You’re likely exhausted from the holidays, the travel, or visiting relatives. And most people with illness pack December’s calendar full of doctor’s appointments too, before their health insurance deductibles all start over in the new years. If you’ve managed to survive January without any colds or infections, you’re in the minority. And in most parts of the country the weather alone can make you feel disabled.

Secondly, make some changes without labeling anything a “resolution.” When you go to grab snacks at the store, get items with high fiber, soy, sugar-free, organic, or even those that have immune boosts. Check with a dietician about what some healthy choices would be, taking your illness into consideration. Little changes will eventually add up, and you can have the pleasure of knowing you are working towards your objective.

Thirdly, make a list of some of the things you value and want to strive for. Don’t just say you are going to “save some money” but instead, think about what you really want to save it for. Have you longed to visit a relative but you’ve not been able to afford an airline ticket to go visit? Though saving money to repair your car may not seem like a fun use of that saved money, surely you value your freedom to have your own transportation. Put your list on the refrigerator or your bathroom mirror so you can frequently recall just why it is you are sacrificing those large white chocolate mochas.

Fourthly, partner up with someone else who has a chronic illness where you can share your goals and how your illness impacts them. Illness adds a great deal of stress to our lives all the time. Any changes are intensified because our disease is so uncontrollable. It’s not helpful to have your healthy best-friend say, “Let’s just walk a half a mile today! A little pain means it is working those muscles!” A friend who can say, “I totally understand how hard it is when you’ve lost five pounds and then steroids put it back on in three days,” is a gift. You will be able to keep perspective on the situation. Chronic pain patients who join support groups often report a better quality of life.

Fifth, give yourself a break. Depression and chronic pain go together way too often. When you make a decision that is less than ideal, don’t sweat it! Don’t think of it as a failure, but rather just a less than perfect choice you made for that moment. You will have another sixty-something times in the next month to make the correct decision. Start out by just aiming for making the correct one more than half the time. Skipping that shopping spree or avoiding the drive-thru burger place is a step in the right direction.

Lastly, assign yourself a goal that is fun! We forget that not everything in our lives needs fixed. Sometimes we just need more joy. Mark your calendar for lunch with a friend every two weeks as a new habit. Surround yourself with people who are inspirational and who overcome the odds in their lives with enthusiasm. And don’t forget to reward yourself too. If you clean out your closet, working towards an ambition to get more organized, go buy a new chic hat that isn’t typically you.

If you have supportive friends and down-to-earth expectations, by the end of the year you will find that you are one of the few people who actually met some of those “resolutions.” And everyone has some of their goals that are left for next year’s calendar! So celebrate the fact that you have found some joy along the journey of reaching towards some new habits, despite living with illness.

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly “as is” including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio program every Tues and Thurs and National Invisible Chronic Illness Awareness Week.

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