Guest Post - Healing Words

Check out Invisible Illness Week's blog right here for my guest post today "Healing Words," an article which was recently featured here at A Fragile Faith. Invisible Illness Week is an annual event hosted by Lisa Copen of Rest Ministries

and is designed to raise awareness about chronic illness and provide resources for those of us who live with a chronic health condition. Invisible Illness Awareness Week is September 12-18, 2011, and the theme is "Deep Breath, Start Fresh."

Jay Cutler's New PR Girl?

Anyone who knows me is clear that I am not a Chicago Bears fan. And I'm not a Jay Cutler fan. And maybe everyone is finished eviscerating Jay Cutler for getting hurt in the NFC Championship game and then not continuing to play or not "acting injured enough" on the sidelines afterwards. But I'm still angry, and NOT at Cutler. Who do these people think they are to say he should have gone back into the game, despite what was later diagnosed as an MCL tear? I have had my fill of people telling ME about MY chronic illnesses and how I should behave and feel in the midst of them. This includes family members, doctors, pastors, and friends. I actually live inside my body and experience what it is like to have chronic illness that interferes with my life 24/7. And I've been doing it for over 17 years! I might know a little bit more about what I can handle and what my limitations are than other people.

First of all, I have personally injured my MCL, ACL, and LCL multiple times in my life. If you haven't had an injury to a knee ligament, YOU DON'T KNOW WHAT YOU'RE TALKING ABOUT. It is very painful, and for the first hour or so after the injury, you may feel nauseated, dizzy, and disoriented. Depending on the severity of the injury, you may be able to stand or bear some weight on the leg, but you can't pivot or shift your weight. And a partial tear is much easier to recover from then a more severe tear. So if you have a tear, you're an idiot to go back out there and injure yourself worse, possibly ending your career.

Secondly, Jay Cutler has diabetes. For a diabetic to be a professional athlete is a feat in and of itself. My husband has been a diabetic for over 30 years, and I've been a part of his life for half of that time. A diabetic's body operates completely different than a healthy person's, and small things can have a huge effect. A sudden injury can even suddenly bring on insulin shock due to stress, adrenalin, etc. Could this have something to do with why Cutler appeared to some to be "disengaged" on the sidelines after his injury?

The point is, you don't know what's going on with someone else's body. I've borne the brunt of the most ignorant comments and thoughtless questions about my chronic illnesses. People want to know why I don't "just" exercise or eat less since I'm overweight. Little do they know that I gained 70 lbs in 6 months from one narcolepsy medication, had untreated or improperly treated thyroid disease for 15 years, my body produces 5 times the amount of insulin it's supposed to in response to food - which causes me to store food as fat rather than burning it as energy, and when I perform mild physical exercise like standing or walking for short times and distances my muscles go limp suddenly due to cataplexy. Not to mention that I eat healthier than 99% of the population. You skinny people would DIE if you had to eat the way I need to just to have the energy to bathe and dress myself!

Why don't I drive? Why don't I have a job? Why don't I attend 12 church services a week? Why isn't my house clean and my laundry done? Why don't I have children...do I not like kids? Why do I need a wheelchair to go to a mall or ballpark? It's GOTTA be that I'm just too fat and lazy, right? After all, I'm "too young" to have all these health issues. I'm probably faking it for attention. Or maybe I'm just depressed. Probably I'm not right with God. And I don't have enough faith to be healed. Blah blah blah blah blah.

The bottom line? We can't look at someone and know what's going on "under the hood." And it's really none of our business unless we really care enough to be a part of that person's life as an encourager, a helper, a real friend, and a prayer warrior. If you're just a critic who attacks people because it makes you feel better about yourself or an "armchair quarterback" who didn't have what it takes to make the playoffs, just keep your mouth shut. I say this with all the love of Jesus and a healthy dose of plain truth. Sow some seeds of kindness and compassion. You never know....some day you or someone you love may have an injury or illness. And when that day comes, you may need that harvest in your own life.

"Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble." -I Peter 3:8

Where's Tonto?

"I feel like the Lone Ranger," my husband said to me last night, sighing as he made the difficult decision to go home for a good night's rest rather than sticking it out at the hospital for another night with me. Part of me was angry and hurt because I am afraid to stay at the hospital alone due to unpleasant past experiences. On the other hand, I recognized he was burned out physically and emotionally and needed his own bed. While I've been either hospitalized or bed-ridden for the past month, he's been trying to run our small business, take care of things at home, take care of me and/or stay by my side 24/7 in the hospital, plan and prepare most of Thanksgiving dinner, run all of our personal errands, and take over the few administrative duties I can still do for our business all on his own. So his "Lone Ranger" sentiment is understandable.

But even the Lone Ranger had a side-kick: Tonto, someone he could talk to along the trail and count on to have his back. Even his horse Silver would pitch in once in a while, dragging him to water when he'd been injured by an outlaw. Because we have no family living nearby, we recently moved to a new area of a large city and have visited our new church only a handful of times, and we have very few friends in our lives that are willing to roll up their sleeves and be involved in our often-dramatic lives, we have sadly grown quite used to bearing our burdens alone. We are thankful for God's grace, for each other, as well as long-distance family and friends who pray for us and encourage us via phone and internet. But sometimes you just need back-up. Like someone who will offer to drop off one of your diet-specific meals, take you to the doctor, or stop by and let the dogs out for some exercise while you're in the hospital.

Everyone is busy and everyone has less-complicated friendships to put their effort into. I know this. But everyone needs someone to talk to along the trail. Someone to count on to have your back. So for MY Lone Ranger's sake...where's Tonto? Heck...I'm sure he'd even settle for someone to just drag him to water.

Some thoughts and ideas I've shared before about being someone's "side-kick":
If We Are the Body
Get With the Program

The Secret Life of the American with Chronic Illness

My house is an absolute wreck! I live in constant fear that someone will stop by my house and find out that I'm not Susie Homemaker. I like things very neat, clean, and uncluttered. And I'm a classic germophobe. So it's not like I'm oblivious to the mess or don't care to address it. At the moment I'm just overwhelmed. Last month I was hospitalized for heart problems, and my sister came from Michigan and stayed with me for about a month to help out. While she was here, she did nearly all of the cooking and cleaning. Then, it took me about a week or so just to rest and recuperate from her visit. (And if you have chronic illness, you know what I'm talking about: is there anything that DOESN'T take a week of recovery?) Also, she and I tended to stay up late at night talking, watching movies, playing board games, etc., which is great except for the fact that it wreaked havoc with this narcoleptic's sleep patterns.

I look around and see piles of laundry that needs folding, furniture that needs dusted, carpet that needs vacuumed, and dishes that need washed and put away. And I don't know where to start. Of course, telling you about it isn't getting it done either. I guess I just felt I needed to confess the huge secret mess that is behind my front door. You probably think less of me now than before, when I seemed perfect and you thought I had it all together. But this is my reality. Sadly, there will probably never be a time when I will be caught up on all of the household chores and would feel great if unexpected company just showed up. That's just a part of my life that I have to learn to accept. I don't know that I'll ever be completely okay with it.

So today it is my goal to get ONE room in my house clean and clutter-free, and if I can accomplish this through God's strength, then I will choose to be content in that. And if you happen to stop by and see all the other rooms in my home, please don't judge me too harshly. I'm doing the best I can, and everything else will just have to stay messy until I get to it.

"Whatever you do, work at it with all your heart, as working for the Lord, not for men" ~Colossians 3:23

Pursued

"Why do I always have to be the one that pursues people? Sometimes I want to be pursued!" This was my outcry as I recently explained to a friend how sad and frustrating it can be trying to make friends with women when you have two "strikes" against you: 1. chronic illness and 2. no children. It took me years to figure out what the problem was; I kept wondering what I was doing wrong. Was I not friendly enough? Did I talk too much? Was I too self-centered? Should I have done more to reach out? But then I started to notice how women with children were always getting together with women who had children. They would go to the mall together, take the kids to the zoo, or invite them over for a lunch picnic. I tried to invite women to things that centered on their children, like a day at the beach with her kids. But I kept striking out. I figured that's just one club I will never be invited into.

But even women in different stages of life - single, married with no children, married with older or grown children - they didn't seem to connect with me either. I never got invites for a "girls' night out" or shopping trip. I even tried to have things like make-up or jewelry parties at my house so that I could interact with other women and get to know them better. It wasn't until a recent conversation with my Life Coach that my fears were confirmed: people don't want to be friends with someone who has chronic illness. It's too complicated and requires too much commitment and energy; so why bother? I realize it's more complicated to make plans with me because I need a lot of notice, don't have the stamina for a long day out, and require a lot of "paraphernalia" just to leave the house. But I just wish someone would think I was worth the extra effort.

Ironically, there have been a couple ladies who have reached out to me. But I soon learned they viewed me as a "ministry" or a "project" and not as a real friend. I guess they felt it was their duty to take me to doctor appointments or visit me in the hospital. But when it came time for the fun stuff, I never made their guest list. And those same women never seemed to have any problems of their own. They never asked me for help or prayer and never shared their frustrations about their marriage or finances. It started to feel very one-sided. I wanted to share in her life and be a friend to her. But you don't make friends with your project.

God has blessed me with a very small number of friends who have loved me through some of the most difficult times in my life. But most of these women live far away and can't interact with me in person. We talk on the phone, on Facebook, or by email, and they are a blessing in my life as I believe I am in theirs. But it's just not the same as having a day at the mall or getting mani-pedi's at the day spa. Maybe that's just too much commitment. I wish someone would think I was worth the trouble and pursue a real friendship with me.

"My friends and companions avoid me because of my wounds; my neighbors stay far away" - Psalm 38:11.

How the Church Can Minister to the Chronically Ill

Ministering to the Chronically Ill: 20 Ways That Take 20 Minutes
by Lisa Copen

Rest Ministries (www.restministries.com), the largest Christian organization that specifically serves the chronically ill, recently did a survey and asked people to "List some of the programs or resources a church could offer to make it more inviting and comfortable." They have provided a sampling of some of the 800+ responses, all of which could be done in 20 minutes or less.

1. Encouragement emails.
2. Make sure the handicapped stalls in the restroom are functioning and clean.
3. Padded chairs or cushions, room for wheelchairs, and plenty of room for my family to sit with me.
4. Be open-minded about a support group for the chronically ill like HopeKeepers. It would make me feel very special, knowing that there is an understanding of people's needs that are not always visible.
5. Add 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. Ask volunteers to call people with chronic illness just to check on them when they don't make it to services.
8. When suppers are given, recognize that I may need help getting my meal--or at least understand that I won't be able to wait in a long line.
9. Be gentle when giving people big hugs. It can topple over or hurt a person.
10. Have a video tape of the service, not just a live web cast. Not all our computers 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. Stop telling me that if I really believed and had faith I would be healed by now. Please don't insist how good 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. Have sermon notes available so I can listen later or even just review what I didn't catch the first time.
15. Acknowledge National Invisible Chronic Illness Awareness Week. Rest Ministries has a nice book list of top 100 Christian books for the chronically ill. It would make a nice display in your bookstore that week.
16. Just mention chronic illness occasionally! Don't forget to talk about it in sermons as one of the challenges many people face just like unemployment or divorce.
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 how many caregivers are in the church, not just caregiving for their parents, but also for their spouses or ill children.
20. Have copies of sermons for free on CD or computer.
Find over 500 ways to encourage a chronically ill friend in the book "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend" at www.beyondcasseroles.com
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I know that some days can seem like more than you can handle. Remember that the Lord promises to never leave you or forsake you. Cling to that. Even when you don't feel his presence He is still there. I tell my 6-year-old son that God is working "under cover." I know I am each day, especially righr now!

Blessings,

Lisa Copen, Rest Ministries Founder
Rest Ministries Chronic Illness Pain Support

Greatest Hits - What You Should Know Before You Head to the ER

In honor of Invisible Illness Awareness Week, I am reposting the following that I blogged last year when I was, ironically, hospitalized for pancreatitis during Invisible Illness Week:

"What You Should Know BEFORE You Head to the ER"

Originally Posted Thursday, September 11, 2008

Here I am in the hospital...again. Ironically, this is Invisible Illness Awareness Week, but I've been too ill to participate in any of the BlogRadio conferences I've been looking forward to for months. Instead, I'm lying in a hospital bed wearing a sweaty hospital gown, having not bathed or washed my hair in 3 days, and worst of all, I haven't eaten or even had a glass of water in 48 hours! Of course, I can't stop fantasizing about a bacon cheeseburger, so if only to distract myself, I think this is the perfect time for me to editorialize on how you can be your #1 advocate in an acute illness situation, especially when that illness seems to be invisible to medical professionals. Hold on to your bedpans, ladies and gentlemen...here we go.

1. First of all, never go to the hospital alone. Bring along a close friend or family member that knows about your health history, and make sure it's someone feisty and bold enough to speak up on your behalf. Even the most stubborn, self-confident person can turn into a pitiful puddle of surrender when faced with severe pain, weakness, or strong medications.

2. Don't go into battle unarmed. Bring a detailed list of all your medications and how and when you take them, as well as the actual medications themselves. Also include a list of any chronic health conditions, allergies, and the contact information of any doctors who are currently treating you. Don't trust this information to memory.

3. Bring a "comfort item." For me, this is my mp3 player, loaded with some of the most encouraging songs I know. When you're lying in that bed waiting for hours for that first dose of pain medication, there's nothing better than being able to focus your mind on something positive. The TV doesn't do it for me, and it doesn't help to hear the medical staff outside your curtain laughing, gossiping, and ordering dinner when you're struggling not to make a deposit into the emesis basin.

4. Rehearse your response to the question, "What brings you here today?". Studies show that doctors ordinarily stop listening to you after the first 30 seconds, so find a clear, concise way to get the most important information into their mind as quickly as possible, and pause until they make eye contact with you. It's amazing how doctors can focus their diagnostics and treatments on an obscure symptom and ignore the big picture, simply because of the way you presented your case.

5. Ask LOTS of questions, and if you don't understand their jargon, ask them to say it in simple layman's terms. Don't be intimidated by their education; no one knows more about your body than you do! Remember to find out why they are recommending a particular course of action, what the possible side effects may be, and whether they are aware of your health conditions or other medications. Just because it's in your chart doesn't mean they know about it.

6. Don't accept any treatment that you don't understand or did not make your own informed decision to accept. This includes the drawing of blood, starting an IV, and especially allowing yourself to be injected with any medication. You would be shocked to know the number of times I have stopped someone as they were about to inject a drug into my IV that I am allergic to...even though it was listed on my chart or even my allergy bracelet. Ask them to state aloud the name and dosage amount before they just shoot you up. Doctors and nurses make mistakes...don't just lie back and expect them to take care of you.

7. Stand up for yourself. Don't be bullied into believing "it's all in your head" when they haven't been able to diagnose the problem. Ask what other tests can be done to take a second look. Insist they draw blood and repeat tests if you've been there for hours and are feeling worse; something may have changed since that first blood draw. Ask leading questions to make them think about other possibilities that they haven't thought of yet. Repeat back to them what they said in your own words; not only will this ensure you understand, but it will also give them a chance to hear their position restated by someone else, which often causes them to realize it doesn't make sense.

8. Use respectful approaches to disagreeing with your health care providers. Rather than expressing anger, try disappointment. For example, "I understand you have a lot of cases you're working on at the same time, but I am really diappointed that I have not yet had a chance to see my treating doctor. Could you please check to see if he/she has even a brief moment to stop in?" Rather than accusing, try questions like, "Is it possible that something was overlooked? Could you ask a colleague to review that x-ray with you a second time, just to be sure?"

9. Don't be afraid to make suggestions as to the course of diagnostics or treatment. If you think of something that may make a difference, respectfully bring it up. The patient is THE best source of information that contributes to the diagnosis of his illness. Don't hold back facts, symptoms, or history that you might find insignificant or embarrassing; you never know what that one missing piece can do to fill in the puzzle for that doctor.

10. If you truly believe your assigned provider is neglecting your care, has made a snap judgment about you that is interfering with his objectivity, or seems unwilling to allow you participate in your own health care treatment, bring in reinforcements. Ask to speak to a more senior doctor, such as an attending physician. Call your own family doctor and ask them to step in on your behalf. Sometimes if you approach your doctor directly about what you feel is happening, they will ask a colleague to take over the case. Keep in mind how you would feel if someone was suggesting you weren't performing well in your area of expertise.

11. Trust your own judgment. If something feels wrong or uncomfortable, if you feel you're being rushed or pressured into something, or if you have a strong suspicion you know what could be causing your symptoms, listen to that voice. Ask them to slow down, to explain things again, or to give you moment to think or discuss the issue with someone you trust. You are in charge; you don't have to turn over complete control to any medical professional. Don't sit on the sidelines; get in the game! Remember...there is no one more concerned about your health than you are.

Now...about that burger....

Seminars & Speakers for Invisible Illness Virtual Conference

I just attended a seminar on issues relating to chronic illness, and I didn't even have to leave the living room. This week is Invisible Illness week, and those of us who deal with chronic illness or have a loved one who has chronic illness understand how difficult it is to travel to or sit through a normal conference. But this conference can be listened to online through blog radio from the comfort of your own home. I heard from Jennifer Jaff, Esquire, an attorney advocate for people with chronic illness. She spoke about health insurance and pre-existing conditions and gave a lot of practical advice that was very beneficial to people with health conditions and the struggles we have to understand and weed through all the "red tape" involved in insurance, disability benefits, etc. I was even able to call in and speak with the host to ask a question of my own. There are several seminars each day this week, and I'm sure that you or someone you know could learn a lot by tuning it to at least one of these sessions. Check out the information below for details on the virtual conference's schedule, speakers, and topics. The seminar times are listed in Pacific time.

09 Seminars & Speakers

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Narcolepsy with Cataplexy
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 1993
4. The biggest adjustment I’ve had to make is: to let things go. I can't do everything I want to do, and I can't do it perfectly. I have learned I have limitations.
5. Most people assume: I'm lazy or just enjoy sleeping a lot
6. The hardest part about mornings are: getting ready to leave the house is a HUGE undertaking. I have to take a break after every step. Take a shower; take a break. Get dressed; take a break.
7. My favorite medical TV show is: Mystery Diagnosis
8. A gadget I couldn’t live without is: motorized wheelchair
9. The hardest part about nights is: getting myself ready to go to sleep. I have to take a bunch of medicine, set two alarms so I can wake up in 4 hrs to take my second dose of meds, clean my CPAP mask and put water in the machine, plus all the normal stuff like brushing my teeth, etc. When I'm so tired I can hardly stand up, it's a nightmare.
10. Each day I take 21 pills & vitamins.
11. Regarding alternative treatments I: have found that they cannot be used to the exclusion of traditional treatments and vice versa.
12. If I had to choose between an invisible illness or visible I would choose: visible because then I wouldn't have to explain myself all the time.
13. Regarding working and career: I can NEVER work a normal 9-5 job because I don't have the stamina and can't be depended on to be somewhere at a certain time. I work from home and help with my husband's business as much as I can.
14. People would be surprised to know: how much I struggle with feeling inadequate and unproductive
15. The hardest thing to accept about my new reality has been: having to admit I can't do things and having to depend on others to help
16. Something I never thought I could do with my illness that I did was: graduate college. It took me until I was 29, and I dropped out, dropped classes, and asked for extensions more times that I can count. But I did it!
17. The commercials about my illness: what commercials? Most doctors don't even know what cataplexy is. I carry info sheets with me wherever I go in case I have an attack.
18. Something I really miss doing since I was diagnosed is: DRIVING!!!
19. It was really hard to have to give up: singing in the choir and singing specials at church
20. A new hobby I have taken up since my diagnosis is: bird watching
21. If I could have one day of feeling normal again I would: not know where to begin. It's been 16 years since I've felt "normal," so I don't know if I would recognize it if it actually happened.
22. My illness has taught me: to be compassionate and empathetic toward others
23. Want to know a secret? One thing people say that gets under my skin is: "It must be nice to stay home and relax all day!"
24. But I love it when people: offer to pick things up from the store for me or take me out for an afternoon
25. My favorite motto, scripture, quote that gets me through tough times is: Romans 5:3-5 "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
26. When someone is diagnosed I’d like to tell them: it's normal to grieve over the loss of your health and your dreams and goals for your life. Don't worry about putting on a brave front. God sees your pain; don't be afraid to let others see it so they can love you and hurt with you.
27. Something that has surprised me about living with an illness is: no one will ever understand completely what it is like for me to live with my illness, so I cannot expect that from people
28. The nicest thing someone did for me when I wasn’t feeling well was: came over and cleaned my house and didn't make me feel bad about how dirty some things were
29. I’m involved with Invisible Illness Week because: there are so many hurting people that are feeling alone in their illness, but spreading awareness can bring hope to those people like it brought hope to me.
30. The fact that you read this list makes me feel: that you love me enough to learn more about my struggles.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com