Building Your Support Team

Once you are diagnosed with a Chronic illness, life comes at you fast. There are tests, doctors, medications, procedures, treatment, etc., to be discussed … decided upon … and juggled. And the best way to manage it all is to build a “Support Team”. But how does that work? Who makes the cut? Let’s talk about that …

 

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Family and friends can be wonderful things. But, in reality, not all families provide strong support systems and not all friends are up to the task. This is your health that we are talking about. Anyone with a Chronic illness will tell you that managing your condition is vital. Your privacy is also involved. Which brings us back to who makes the cut:

  • Doctors are a given.
  • Disease Information. This will help you to make decisions & build your team.
  • Therapists and/or Nutritionists may be needed to get you started or even long-term.
  • Best Buds, i.e. spouse, partner, family, friends, a neighbor, or even a co-worker. People you can count on to help you emotionally and/or physically. This should be  dependable & responsible individuals. They should also know how to practice discretion. If you have more than one in your life … “Yea!”
  • Support Groups can be found in most areas — even online (hint, hint, hint). These are very beneficial if your Best Buds are limited or not living close-by.
  • A Good Pharmacy & I lean toward national chains. If you forget to pack a prescription, lose one, etc., it’s easier to get it replaced. Most offer mail-delivery, too.

Building your team may sound like a daunting task, but it’s not as difficult as you may think. Specialists and surgeons will be referred, if needed, by your physician. This is also true for therapists, nutritionists, etc. Your physician can provide information about your disease, too. And there’s a wealth of good information on sites like Mayo Clinic, WebMD, CDC, etc. Your “Best Buds” are the easiest to pick, because you know them and they know you. You also know their strengths and weaknesses. Some will be better for a specific task than others. So, talk to them. Discuss your condition as well as any help you may need, i.e. transportation, errands, watching the kids for a couple of hours, etc. Support Groups may be of interest to you, or they may not. The choice is yours and depends solely upon your needs and preferences. A good pharmacy is something that you don’t really think about, until it becomes a constant part of your life. If you don’t have one, now is the time to locate one. With any Chronic illness, you will need it. This is your new normal.

It’s a lot to take in. I know. Once diagnosed, you can easily feel overwhelmed … scared … frustrated … depressed … even angry. That’s why your support team is so important. Together, you can and will effectively manage your condition. Millions do so, every day. Last but not least, try not to let your imagination get the best of you in the worst of ways. Don’t worry yourself over things that may never happen. Don’t allow worst-case scenarios to keep you awake at night. Cross that bridge, when and if you come to it. You have better things to do, than dwell on the negatives. Prioritize. Focus. Embrace optimism. And live!

 

Reference Links:

https://www.mayoclinic.org/diseases-conditions

https://www.webmd.com/

https://www.cdc.gov/chronicdisease/about/index.htm

https://www.psychologytoday.com/us/groups/chronic-illness

https://medicalxpress.com/news/2018-07-groups-boost-health-chronic-conditions.html

http://www.ihi.org/resources/Pages/Changes/SelfManagement.aspx

https://medlineplus.gov/ency/patientinstructions/000602.htm

https://www.caregiver.org/resources-health-issue-or-condition

8 Ways to Build a Support System When You Feel Defeated and Alone

*Photo by Sheri Hooley on Unsplash

All I Want …

Around this time of year, we often hear the dreamy wishes of young and old alike. Usually, these involve gifts (some more expensive than others) … travel … parties, etc. Hints are dropped … in texts … in emails … on Post-it notes, etc. To say, there are plenty of grand expectations is an understatement. But how important are these wishes? I wonder. People tend to take a lot for granted. Yet, now is the time we should all consider what we truly want — what we need. Life’s simple pleasures are far more priceless than they are given credit for being. Because these are the things that add true meaning to our lives. 

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Consider, for a moment, the popularity of a certain Christmas song. After 25 years, Mariah Carey has hit No. 1 on Billboard with “All I Want For Christmas Is You“. What resonates with fans? Is it an old favorite that stirs sentimental feelings? Or is it the simplicity of the message? Love.

As December and 2019 slips by, do some serious soul-searching. What are the things that are most important to you? For me, it’s my guys (husband, son & fur-baby). It’s their love that sustains me and encourages me. My faith, praise God, which has always lifted me. It’s good health, for me and my family. The ability to manage my Chronic illnesses. The joy of good friends, at the holidays and all year long. The quiet of our home, in the evening. The calm of flickering candles. Holding hands (even in church). Sharing a hug. Stealing a kiss under the mistletoe. The sheer peace of knowing, no matter what comes along, they have my back. And I have theirs. Some things cannot be bought. They must be felt. In this modern-age when our society seems all too willing to put a price on anything and everything, the simplest of pleasures are still the best. May each of you embrace yours.  Merry Christmas!

 

 

Reference Links:

https://www.billboard.com/articles/business/chart-beat/8546418/mariah-carey-all-i-want-for-christmas-is-you-number-one

*Photo by Tom Mossholder on Unsplash

We Need Human Touch …

Most of us don’t put a lot of thought into this subject, but there is much to learn from it.  If you were raised in a family who openly showed affection, you are most likely a hugger. You hug family, friends, new acquaintances, etc. It is a social interaction that is part of your daily life. If you were raised in a family who didn’t easily share affection (by that I mean often or at all), you may not like hugging. You probably don’t even understand why some people are so open to affection. Yet, touch is a basic human interaction. An infant is soothed by it. An adult feels comfort, even joy, from it. And what they are feeling is real. It’s significant. Because we all need human touch — the decent, affectionate kind. It has the ability to relieve us of pain, fear, frustration, etc. It has the power to make us feel loved and appreciated. But how does something like a hug do all that? 

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According to researchers, we all have the ability to communicate many feelings through touch. Physical contact is what distinguishes us from other animals. It is a silent language that needs no words. A mother can cuddle her crying baby, in the night, and the message is clear. The infant knows he/she is secure and their crying ceases. A stranger can go into a natural disaster area and offer a hug to a distraught victim. Again, the message is clear. Help has arrived. That compassion, even from a stranger, can be sensed. And it’s powerful. There is also a difference between a caring touch and an aggressive one. The two categories should never be confused. 

When we offer or receive a caring hug, oxytocin is released in our bodies. This is a “bonding” hormone. It has the ability to reduce stress, lower cortisol levels and increase our sense of trust/security. In fact, in a study conducted by the University of North Carolina, researchers discovered that women who received more hugs from their partners had lower heart rates and blood pressure. That’s healthy! A massage has the ability to relax the body, ease pain and melt away tension. That’s healthy! Even something as simple as eye contact and a pat on the back from a patient’s doctor may boost their survival rate, despite the complex disease they are fighting (University of California research). It may sound too good to be true, but science supports it.

Scientific research actually correlates physical touch with several things:

  • Decreased violence. Less touch as a child will lead to greater violence.
  • Greater Trust. Touch has the ability to bond individuals.
  • Decreased Disease & Stronger Immune Systems. In other words, a healthier you.
  • Greater Learning Engagement. When teachers touch students platonically, it encourages their learning. They are also more likely to speak-up in class.
  • More Non-Sexual Emotional Intimacy. Interpersonal touch has a powerful impact on our emotions. 
  • Stronger Team Dynamics. We touch to initiate and sustain cooperation. Hugs and handshakes increase the chances that a person will treat you “like family”, even if you’ve just met. 
  • Economic Gain. Touch signals safety and trust, i.e. NBA teams whose players touch each other more, win more games.
  • Overall Well-being. Adults need positive human touch to thrive, i.e. hugs, handshakes, a pat on the arm or back, holding hands, cuddling, etc. It is fundamental to our physical, mental and emotion health.

Today, we are even seeing Touch Therapy being used to treat patients. First standardized in the 70’s, scientists are not sure how this technique works. The popular theories are: a) Pain is stored in the body’s cells; b) Think quantum physics. Blood, which contains iron, flows through our bodies and creates an electromagnetic field; c) Good health requires a balanced flow of life energy. And there are many Chronic illnesses that respond to this treatment, i.e. Fibromyalgia, Lupus, Alzheimer’s, Chronic Pain, etc.

Some of us are old enough to remember the social panic that AIDs initially created. People feared that it could be spread by even the simplest forms of human contact. Patients often suffered in near isolation. Until, one day, a certain princess visited an AIDs hospital … and held the hand of patient. No gloves. No mask. Just hand-to-hand touch. Thank you, Diana. You not only helped that patient, you changed the global perception of a disease.

We are all in need of human touch … of its power … its compassion … and its ability to literally make us feel better. Some are starved for that connection. So, stretch out your arms … reach for a friend, a family member, your pet, even a stranger. It’s time that we all embrace a hug for our good health. 

 

Reference Links:

https://www.psychologytoday.com/us/articles/201303/the-power-touch

https://www.psychologytoday.com/us/blog/lifetime-connections/201808/not-everyone-wants-hug

https://www.khca.org/files/2015/10/8-Reasons-Why-We-Need-Human-Touch-More-Than-Ever.pdf

https://www.psychologytoday.com/us/blog/the-mind-body-connection/201309/why-we-all-need-touch-and-be-touched

https://psychcentral.com/blog/the-surprising-psychological-value-of-human-touch/

https://greatergood.berkeley.edu/article/item/hands_on_research

https://www.in-mind.org/article/that-human-touch-that-means-so-much-exploring-the-tactile-dimension-of-social-life

https://theweek.com/articles/749384/painnumbing-power-human-touch

https://www.healthline.com/health/haphephobia#symptoms

https://www.mountsinai.org/health-library/treatment/therapeutic-touch

https://www.bbc.com/news/av/magazine-39490507/how-princess-diana-changed-attitudes-to-aids

*Photo by Gus Moretta on Unsplash

Taking Care Of The Caregiver

When a person is diagnosed with a Chronic illness, focus naturally centers on the patient. This is necessary, for proper treatment and disease management. While most patients have a Support System (or should for best results), many will at some point require a caregiver. This individual, whoever he or she may be, is an essential part of that patient’s life and a vital part of their disease management. They are also, often times, neglected. And that’s an unacceptable risk. Which is why it is imperative to take care of the caregiver …

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Make no mistake, there is nothing easy about the task. Care-giving can be very difficult. It’s mentally, physically and emotionally challenging. I have answered the call, twice in my life. At age 30, I was my father’s caregiver when he was diagnosed with Stage 4 Lung cancer. At 48, I was my mother’s caregiver when she was diagnosed with a very rare cancer (Non-Hodgkin’s Lymphoma Primary to the Bone). Both were extremely different experiences, despite the fact that both of my parents had cancer. Never think, for a moment, that previous experience prepares you to be a caregiver. It does not. Each patient is unique. And each will require different levels of care. When I reflect back on both of my care-giving experiences, I am reminded of a quote from the Charles Dickens novel A Tale Of Two Cities“It was the best of times, it was the worst of times.” By that, I mean that there were special moments that I will forever hold dear in memory. But there were also times that were heart-wrenching, scary, overwhelming and physically/mentally exhausting. That is care-giving, in a nutshell. Yet, if I had to make the decision again, I would do so. But that’s just me. The responsibility isn’t for everyone. And there is no sin in admitting that. 

If you are a caregiver, or considering the duty, take a moment to reflect upon the demands of the position. And by all means, take preventative action for your own health. No caregiver, regardless of age, is immune to stress … fatigue … or depression. In fact, I would wager that a caregiver is more vulnerable. Why? Because a caregiver naturally puts his/her needs, on the back-burner. As a caregiver, the priority must be the patient that he/she is caring for. So, caregivers often neglect what their bodies need. But if you allow your own health to decline, who is that really helping?

When caring for my dad, his Hospice nurse gave me some priceless advice, “Do something for yourself, because he needs you.” Nancy was so right. It can be once a day, for 30-60 minutes. Or possibly, it’s just once a week. It doesn’t matter which you choose. If you are a caregiver, do something for you, i.e. a massage, a yoga class, a walk around the block, a Bible study, an art class, etc. Indulging in a little “Me Time” may feel a bit selfish, at first. Yet it is vital to keeping you healthy, relaxed and mentally sharp. So, get out and indulge yourself. Then, you can consider these additional tips:

  1. Get some exercise. Even in regular, small increments, it can boost your energy level. Exercise also reduces stress, helps you maintain a healthy weight, etc.
  2. Eat healthy. This too will give you more energy. Eating healthy can help prevent other health problems, too. Also remember to snack healthy.
  3. Don’t Forget How To Laugh. Laughter is good medicine. Try to find some humor in your day-to-day experience as a caregiver. Share a laugh with the loved one in your care (he/she needs joy too)!
  4. Watch-out for depression. The demands placed on you as a caregiver can be difficult and stressful. Stay vigilant. Talk to your doctor, if you think you are experiencing symptoms, i.e. sad, anxious, anger, feeling helpless, irritable, weight loss or gain, sleep issues, difficulty concentrating, etc.
  5. Takin’ Care of Business. Remember that retro phrase? Well, it’s good practice. Balance your checkbook. Pay bills. Work when you need to. Save for a special outing, anniversary, or trip. It’s good for both of you!
  6. Keep Your Dr. appointments. If you’re sick, you won’t be able to do what your loved one needs. So, visit your doctor & dentist regularly. Get your lab-work, or flu shot. Your good health is the fuel that keeps this care-giving engine running!
  7. Optimism is key. Refresh your mind, every day. Yes, you have limitations. We all do. So, let go of that guilt. Acknowledge the job that you’re doing. It’s special and important. Like other things, care-giving has a learning-curve. You will get there.
  8. Stay connected. Use the phone, internet, newspaper, etc. But, by all means, stay connected to the outside world & what is happening around you.

Last, but not least, if you need help … ask for it! Call a family-member or friend and ask for some assistance. Talk to your doctor and your loved one. If the patient’s level of care becomes too extensive, it could be time to consider hiring a professional caregiver. If you need to work, consider utilizing Adult Day-care options in your area. Just remember … you aren’t alone. There are many who are willing to offer ideas and alternatives. Don’t be afraid to seek their advice. Take care of your loved one — and you!

 

 

Reference Links:

https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

https://caregiveraction.org/resources/10-tips-family-caregivers

https://www.cancer.net/coping-with-cancer/caring-loved-one/tips-being-successful-caregiver

https://www.nia.nih.gov/health/taking-care-yourself-tips-caregivers

https://www.heart.org/en/health-topics/caregiver-support/top-10-caregiver-tips-for-staying-healthy-and-active

Adult Day Care Services

https://www.rwjf.org/en/library/articles-and-news/2003/04/the-role-of-adult-day-services.html

https://www.webmd.com/depression/guide/depression-symptoms-causes#1

*Photo by James Hose, Jr., on Unsplash

Your Privacy, Your Chronic Illness & Your Job

Don’t let anyone fool you. When you live with a Chronic illness, you do a lot of thinking. You make a lot of decisions. Cool tee shirt aside, life really is filled with tough choices. And if you haven’t juggled many in your past, a Chronic illness will change that quickly. Which doctor do you trust? Which treatment do you choose? Which medication/s will work best? And aside from these obvious questions, you also wonder about your privacy. Yes, HIPAA is a great thing. And there are similar protections in place abroad, i.e. PIPEDA, Directive on Data Protection. But, outside of medical community, who do you share your illness with? Who do you entrust with that personal information? How much is, well, too much?

Let’s start with your family and close friends. They are usually part of your support system. And, yes, they need to know about your diagnosis. Especially, those who are closest to you. A strong support system will help you to manage your condition more effectively. Providing them with additional information is also helpful, i.e. the name of your doctor, your medications, etc. Next, is your workplace. And that’s an entirely different animal!

Legally, you are not required to disclose a Chronic illness to your employer. An employer hires you to do a job. If you are capable of doing that job, you are fulfilling your end of the deal. This also holds true, if you are seeking employment. On the other hand, some say the added stress of trying to conceal their condition was/is frustrating and difficult. There is no wrong answer, here. It really depends on what you are comfortable with. You may choose to discuss your illness with HR, but not your co-workers. That too is okay. Nobody wants to be gossip fodder for the break-room. This is about your health and your privacy.

Many patients learn what their group health plans offer, after they have been diagnosed. Better late than never, I guess. When you are living with good health, you are truly experiencing a blessing. But knowing your health coverage is also the peace of mind that will help you to sleep at night. Take a few minutes to actually get those facts. And if you have never taken the time to acquaint yourself with Labor Law, here are two key pieces of legislation to start with: The Family Medical Leave Act and the Americans With Disabilities Act. Living with a Chronic illness, you may need to use one or both at some point. Understanding them is crucial. Sadly, disability discrimination still exists in our society. And many Chronic illnesses can lead to a disability. If you ever feel your employer is harassing you, or is discriminating against you, due to your Chronic illness … you can contact the Equal Employment Opportunity Commission or EEOC. Know your rights. They exist to protect you.

Last, but not least, go out and LIVE! Don’t allow your disease to define you. It isn’t what you are, it is just a part of who you are. So, make plans. Work. Travel. Finish Grad School. Buy a home. Start a family. Set goals. Dare to dream. The choices are waiting and they’re all yours!

 

Reference Links:

https://www.hhs.gov/hipaa/for-professionals/security/laws-regulations/index.html

https://www.atlantic.net/hipaa-compliant-hosting/beyond-hipaa-international-health-data-protection-europe-canada/

https://www.dol.gov/whd/fmla/

https://www.ada.gov/2010_regs.htm

https://www.eeoc.gov/facts/ada18.html

https://www.eeoc.gov/laws/types/disability.cfm

*Photo by Jose Llamas on Unsplash