How To React When A Loved One Is Diagnosed With A Serious Illness

I'm sure many of you have experience with this one. A friend or family member is diagnosed with chronic pain, diabetes, cancer, lupus, epilepsy or another chronic, potentially life threatening or fatal disease. How should you react?

The truth is, there's no right way. I mean, the wrong way would be to laugh in their face or never speak to them again. I know that mom and I have lost friends because of scary illnesses - friends just couldn't handle it, so they disappeared. If you're feeling like you can't deal with your loved one's diagnosis, be honest. Let them know that you're not sure what to do, but that you can simply be there for them. Maybe you haven't had to deal with something this severe before, and that's okay. Just be sure, however you react, that it's supportive. So, beyond that initial reaction, what can you do?

One of the first things you can do is either ask them about their diagnosis, or do some extracurricular research. Webmd.com is a good, realiable place to start if you're looking up a specific illness. You can also browse bookstores or your local library for information. This will show your loved one that you care enough to educate yourself on what they're going through, and will give you the peace of mind that comes with knowledge.

Another thing you can do is listen. Just listen. Don't try to compare what they're going through with what someone's cousin's dog went through, just listen and respond appropriately. Sometimes a "I can't even imagine what that's like," or "that must be so frustrating" is enough.

Lastly, you can get off the topic. Life goes on no matter how we're feeling, right? So, if possible, take your friend out for a quick shopping trip, bring lunch by and have a picnic in the living room, rent a movie - do something that doesn't involve his/her health problems. If your loved one isn't well enough to do something active, you can always read to them, do chores, or run errands for them and recount what you heard and saw when you get back.

Remember that people respond differently to bad news. Some handle it with tears, some with humor, some with a practical, straightforward attitude. You can take cues from your loved one to see what responses are appropriate to them. A great resource that I'm currently reading with my husband is the book The Five Love Languages by Gary Chapman. (Click the link to go to the official website, where you'll find quizzes and other info.) It's a book about discovering your husband or wife's "love language," or the way they express and receive love. Even though the book is designed for couples, the concept translates to family and friends easily. Find their love language, and you'll learn how to show them you care in the best way. Sometimes it's with gifts, like bringing what Mom and I call "happy day gifts" (gifts without special occasion,) or it might be with quality time, just sitting and talking about what's going on in life. Whatever your loved one's love language, you can assure they feel loved by you when you come to visit.

A side note - if you're having difficulty dealing with your loved one's diagnosis, or are just looking for advice or kinship, look for a local support group. Support groups aren't just for people with illnesses, they're also for the people the illness affects indirectly. So, while you're printing out a list of support groups your loved one could be a part of, find one that you can be a part of, too.

Wishing you wellness,
Chelsea

I like to move it - move it!

For anyone who's ever had an health issue that kept you from exercising, you know what I mean when I say it can be a big issue. If you're not able to exercise, it can cause more problems. Other people don't understand why you can't do simple physical activity, or why you can't do as much of it as they think you should. It's frustrating to feel physically limited, like you can't keep up with everyone else. Lack of activity can bring on depression, fatigue, and weight gain. If the health problem lasts long enough and is severe, it can make you not want to move at all, no matter how good exercise is for you. Mom cried when the cardiologist (who had just put several stents in her heart) told her she needed to exercise. The FMS and Lupus had been so bad and she was in so much pain that she thought exercise was impossible. He said that if she wanted to live, she had to exercise.

The truth is, you're not in competition with anyone but yourself. Talk to your doctor about a safe exercise routine you can commit to, and start small. Even if you're doing resistance exercises with a band or walking 5 minutes a day, you're doing something, and chances are you'll be able to increase the amount of physical activity you do over a period of time. Mom started out walking to the next house and back, and worked her way up to a mile a day. Her Fibro pain became much less severe, her heart was healthy, and it definitely helped when she was diagnosed with Diabetes. I can say that when I exercise more, I get better sleep and have less pain. Don't worry about others' expectations, or comparing yourself to other peoples' fitness levels. It's about you and your well being. If you have to, stay away from gyms (unless being around others is what motivates you!)

Set realistic goals for yourself and find what works for you. Don't overdo it. You'll quickly learn when you've exerted yourself too much. Don't beat yourself up over it; just back off and give yourself a break. Be sure to stretch before and after any activity, breathe steadily and purposefully during exercise, and give yourself time to rest between workouts, whatever that means for you.

Some low-impact exercise ideas that require no equipment, can be easily modified to your fitness level or injuries, and can be mixed and matched:

Walking. If you're able, this is a great exercise that you can take at your own pace. It's easy and fun to do with a partner (it's a great time to chat,) and can be scenic if you're not using the treadmill. To find out if your neighborhood is walk-friendly, go to walkscore.com and enter your address. You can even enter a specific commute to see how long your walk will be.

Biking is a good alternative to walking, especially if you're running errands and don't want to have to carry bags around. WalkScore also gives estimated times for biking trips.

Yoga. You'll learn how to breathe with each movement, you'll stretch, and you'll use your own body weight to strengthen muscles. Try Hatha yoga for a stress reducing workout, and, my favorite, Ashtanga for cardio.

Tai chi. Again, breath is very important, and can be a little less intimidating for those who associate yoga with turning into a pretzel.

Pilates. Using repetitive muscle movement (usually lying down,) you focus on core strength, which is helpful no matter what your health issues!

Water aerobics or swimming. This is about as low impact as you can get, but be careful! The weightlessness you feel in the water alleviates pain in joints and muscles while working out, but that same weightlessness can sometimes result in overexertion that you will definitely feel the next day. Even walking in water that's waist deep is a workout!

Dancing. You don't even need a partner. Just turn on the music and move your body! You can also check out a local college for dance lessons in their continuing education course list, or check the YMCA.

Wishing you wellness,
Chelsea

The Ultimate Tool For Life Changing Events

Some friends of ours who are about to have a baby have introduced me to a great site! Carecalendar.org is a free tool for those looking to recruit and organize helpful family/friends/church members to help their loved ones through stressful times. This is a wonderful resource for those who are going through a life changing event like short term or chronic illness, having a baby, or losing a loved one. The calendar is customizable depending on the specific needs of the recipient - meals, transportation, house work, errands, you name it! You can let people know exactly what is needed and when, the calendar shows which needs have been met and which ones still need to be fulfilled, and the site even sends email reminders to those who have signed up to help.

I hope you can use this site as a tool to alleviate stress, maintain wellness for yourself and/or a loved one, and promote the sense of community that we all need throughout different stages of our lives!

-Chelsea

Your Daily Dose of Inspiration

Meet Carly, a teenage girl who's changing the world of autism (Spanish subtitles):

http://www.youtube.com/watch?v=M5MuuG-WQRk&feature=related

To learn more about Carly:
http://carlysvoice.com/

Wishing you wellness!

Chelsea

Where to begin?

The biggest challenge in starting this blog is where to start.  Start at the beginning (about 6 years ago) or what's happening now?  To better understand the complexity of this, here are a few more background details. 

Our mother was a strong, professional and very prideful person.  The last years of her life she endured many major health problems including cardiovascular and cancer.  She wasn't the easiest patient to deal with.  She demanded respect and expected all of her caregivers to provide excellent, TIMELY and effective care.  If you didn't meet her expectations, she had no problem letting you know.  Over a period of time, mom's health declined to the point that she no longer felt safe living alone.  Always at mom's beck and call, my sister Karyn and her daughter Chelsea moved in with her.  Living in another state, my ability to provide daily assistance wasn't an option.  Karyn became her primary caregiver until she passed away.  We developed a very close bond with nightly phone calls and visits as frequently as possible.  Being in healthcare, I frequently was the interpreter of all the medical gibberish.

After Mom's passing Karyn, Chelsea and I dealt with all of the usual issues with the estate and some very disfunctional family members.  This only served to bring us closer together.  Of course the majority of the estate concerns fell to Karyn.  As many of you know, this is a very stressful and emotional process.

Flash forward a few months, and I'll never forget the phone call.  "I'm having chest pains, trouble breathing and feel like I'm going to pass out...."

You're too young to have all these problems....

Heart attack, Cardiogenic shock, 3 STENTS, Epilepsy, Lupus, Fibromyalgia, Type II Diabetes, 3 knee surgeries, Aortic Valve Insufficiency, Cervical Cancer and Polyneuropathy. Oh, and throw in a broken toe to boot!

The list of diagnoses is to represent all of the different specialities that Karyn has encountered and to show that the behaviors good and bad cut through all areas of this healthcare system. I wonder how their patient satisfaction scores look? Think I will look them up on Hospital Compare.

If you go to the following website, you can see how patients rate specific hospitals.   Last updated on 4-11-11.  http://www.hospitalcompare.hhs.gov/  Sadly, the healthcare system Karyn is using is below state and national averages in all areas except one.  Clearly we aren't the only ones that have had less than stellar experiences.  Do they not know that starting as early as the end of 2012, that their reimbursement is going to be reduced and they will have to earn it back based on their Patient Satisfaction scores in addition to other quality criteria? Regardless of payment, treat patients like they are your favorite family member or friend, it's the right thing to do.