Just A Thought About Chronic Illness …

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One Thing Can Lead To Another …

Dare I say it? Yet, if you are living with a Chronic illness, you know it’s true. Secondary conditions happen. In fact, by 2020, it is projected that 157M Americans will be living with some form of Chronic illness. And 81M, well over half of them, will have multiple conditions. But what exactly are these secondary illnesses? The list is long and complex, i.e. Depression, Anxiety, Lupus Nephritis, Pericarditis, Sjögren’s SyndromeCushing’s Syndrome, Secondary Raynaud’s, Secondary Fibromyalgia, Myocarditis, Anemia, Dysphagia, Glaucoma, etc. This isn’t about a low-grade fever, or stiffness. These secondary conditions are serious health problems, in their own right. And when they follow your initial diagnosis, it is both scary and frustrating.

 

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Because of the sheer nature of how a Chronic illness effects a patient, from onset through progression, I want to focus for a moment on Depression and Anxiety. Both are common among the chronically ill. Life is changing. Physical and/or mental abilities are changing. To say that it’s overwhelming is, well, an understatement. The diagnosis alone usually hits a patient like a ton of bricks. Some chronic illnesses, i.e. Parkinson’s, Stroke, etc., actually effect the brain. These changes can directly lead to Depression. Anxiety and stress can also lead to depression. Both are felt by patients who live with any Chronic illness. And a secondary diagnosis can magnify these problems.

If you are experiencing symptoms outside the norm for your diagnosed condition, you should talk to your doctor. You may be living with a secondary illness. And it should be treated — not ignored. A good Support System will help you to cope with your Chronic disease as well as the secondary, i.e. family, friends, doctor, etc. Think of it as a “team sport”! Support Groups are available in many areas. If you are interested, you can contact national organizations for details, i.e. American Cancer Society, SAMHSA, American Lung Association, American Heart Association, The Arthritis Foundation, etc. Or simply ask your physician. These are very beneficial for caregivers, too.

Optimism is also key to living with and effectively managing your Chronic condition. Understand your illness — don’t just accept the diagnosis. If you want another medical opinion, ask for one. It is your body and your right. Learn the facts. Knowledge is power. Find out what you can do, i.e. diet, exercise, medications, etc. Pace yourself. Delegate tasks to reduce your stress level. Understand that setbacks can and usually do happen. Secondary conditions are common. Pursue preventative measures, if possible. If not, maintain your perspective. Blaming yourself isn’t going to help the situation. A Secondary Condition isn’t the end of the world. Let’s say that, again … a Secondary Condition isn’t the end of the world. It’s just a curve-ball that you must deal with. And you can. Millions of patients are doing it. So, give it your best shot! 

Always make the most of every day. Even the difficult ones are a gift. Although, they may not feel like one. With a positive approach, you will also feel better both mentally and physically. You will be able to manage the changes, too. And get back to living!

 

 

Reference Links:

https://www.nationalhealthcouncil.org/sites/default/files/AboutChronicDisease.pdf

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

Secondary Conditions

http://www.jrheum.org/content/46/2/127

Managing Multiple Rheumatic Diseases: How One Patient Copes with Her Disabilities & Advocates for Others

https://www.cancer.org/treatment/support-programs-and-services.html

https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml

https://www.samhsa.gov/find-help/national-helpline

https://www.ncbi.nlm.nih.gov/books/NBK11438/

https://www.lung.org/support-and-community/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209342/

*Photo by Kyle Glenn on Unsplash

Where Is Freedom?

Or, perhaps, I should ask what is it? Often times, we associate freedom with politics. But, for a moment, let’s consider another form. Many Chronic illnesses infringe upon the patient’s freedom or mobility. They feel chained to oxygen, wheel-chairs, catheters, insulin, etc. They feel a loss of freedom. I understand how they feel and their frustration. I have been there. Occasionally, I allow myself to ponder the subject even now. But it’s nothing like the torment that it once was. Today, it’s more of a reflection. Cathartic. Dare I say it? A celebration of my ability and perseverance. How? My faith. The Spirit of the Lord is truly freedom. Nothing accentuates that fact like doing battle with Chronic illness.

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“Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom.”  — 2 Corinthians 3:17 (NIV)

There are skeptics, I’m sure. To them, I can only add that spirituality or faith has shown medical results. Consider those findings. I’m certainly not here to debate His divine existence with you. Faith is a freedom in itself — a personal journey. I know my experience. I’m more than happy to share it. But I can’t make such decisions for someone else.

If you or a loved one are struggling with a Chronic illness (and millions are), take a moment to reflect upon your battle. Consider turning to your faith, for strength and solace. Or, perhaps, finding it? Take a breath. And embrace the fact that God doesn’t create junk. He creates beauty, intelligence, strength, etc. He created you and I — just as we are — for a reason. There are no perfect human beings.

Your illness is only as enslaving as you allow it to be. That may sound too good to be true, but our mental health effects our overall well-being. Things like stress, anxiety and depression only complicate things. They don’t help. But a strengthened mind can lead to a strengthened body. When you think beyond your condition, you can break the chains that are holding you back. You can find ways to regain that precious freedom. You can discover new talents, hobbies, even careers. And you can live … fully … happily. You can even thrive! 

May God Bless!

 

 

Reference Links:

https://www.cdc.gov/workplacehealthpromotion/tools-resources/pdfs/issue-brief-no-2-mental-health-and-chronic-disease.pdf

https://www.mayoclinicproceedings.org/article/S0025-6196(11)62799-7/fulltext#cesec230

https://spiritualityandhealth.duke.edu/index.php/the-link-between-religion-and-health

Sharing Mayo Clinic: Eight Lessons on “Compassion in Health Care”

*Photo by Ryan Moreno on Unsplash

Are You Packing?

OMG! It’s June! How did that happen? Time can really fly when you’re busy. And before you know it, vacation is upon you. Most people enjoy traveling. It doesn’t matter if it’s a weekend get-away, or a longer excursion, we are all-in. Eager. Ecstatic. Ready to go. Or are we? If you live with a Chronic illness, a vacation can offer a lot of healthy benefits. But it can also be stressful. To avoid the latter, requires planning. After all, you want to enjoy your vacation!

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By now, you have probably selected a location, i.e. beach, mountains, cruise, etc. No doubt, you have booked your reservations. And if you need to obtain a passport, you’ve most likely taken those steps. So, for a moment, let’s focus on that last month before your departure. If you are traveling abroad, this is a good time to talk to your doctor. You should also discuss your destination, in case specific vaccines and/or medications are needed. Check with your health insurance. Some plans do not cover you abroad. If yours doesn’t, now is the time to buy additional coverage. If you are traveling with oxygen or a CPAP machine, notify the airlines in advance. Some may ask for a letter from your doctor. The TSA can provide more information on their helpline (toll-free at 855-787-2227). They can also give you the details on the screening process, regarding specific disabilities or medical conditions. 

As the days pass, don’t wait until the last minute and stress yourself out. Make a list of things you need to do and check them off, one by one. Are you boarding your pet/s? Confirm that. Confirm your own reservations, i.e. hotel, flight, cruise-line, etc. Think about what you pack. The bikini isn’t your priority item. A Travel Kit is. This kit should include things like over-the-counter meds, prescription meds, your health insurance card, etc. Be sure to pack your kit in carry-on luggage. Nobody needs the hassle of losing their clothes and medications. Your medicines should always be in their actual pill bottles. And if you can, carry copies of your original prescriptions. Pack enough for your trip, plus a couple of days more (just in case there’s a delay). If you don’t regularly wear a Medical Alert bracelet, please add a card that details your medical condition to your kit. In the event of an emergency, it’s a godsend.

Remember the little extras that make managing your condition possible. Do you sometimes need a heating-pad? A neck-pillow? Compression socks? A sweater (even in warm weather)? Make sure to pack these things. You are on vacation. Your chronic illness isn’t. 

Only one week to go. You are almost ready. Stop your mail, if you haven’t already done so. Notify your bank and/or credit card companies that you are traveling. Be sure to make a family-member or friend aware of your itinerary, especially if you are traveling alone.

Finally, it’s time to leave. YEA!!! Vacation has arrived. Enjoy each and every moment. Take your medications as prescribed. Don’t pack too much activity into any single day. Continue to pace yourself. And, by all means, have a safe trip! 

 

Reference Links: 

https://wwwnc.cdc.gov/travel/page/chronic-illnesses

https://www.hopkinsmedicine.org/health/wellness-and-prevention/traveling-with-chronic-conditions

https://www.americanmedical-id.com/extra/all-medical-id-bracelets.html?gclid=EAIaIQobChMIgpWv793S4gIVzJ6zCh2gwQPPEAAYAiAAEgIfUPD_BwE

Rare Parenting: Traveling with Chronic Illness and Children

*Photo by Deanna Ritchie on Unsplash

More Than Tired: Chronic Fatigue Syndrome

Are you tired? We’ve all been there. For one reason or another, most of us have struggled with fatigue. Perhaps, you couldn’t sleep the night before? Or you burned your candle at both ends until you were exhausted? It happens. A cold, flu, or other illnesses can also result in fatigue. But what if there is no reasonable explanation? Then, like the millions who suffer from Chronic Fatigue Syndrome, you may be more than tired. You may be living with a complex Chronic illness.

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Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis as it is also known, is a complicated disorder. Symptoms of CFS/ME include:

  • Fatigue
  • Loss of Concentration and/or Memory
  • Unexplained Muscle and Joint Pain
  • Headaches
  • Unrefreshed Sleep
  • Extreme Exhaustion

Since these symptoms can accompany other illnesses, it’s important to see a doctor for a proper diagnosis. And your patience is required. It isn’t unusual for the final diagnosis to take a while. Most patients will tell you that they waited months (years, in some cases) and saw more than one doctor. Age and gender play a role, with CFS. Women are much more likely to be diagnosed than men. Patients are usually middle-aged (typically their 40s), at onset. It is also believed that certain “triggers” may initiate the disease, i.e. viral infections, fragile immune systems and hormonal imbalances. Since there is currently no cure or specific treatment for CFS/ME, physicians focus on relieving the patient’s symptoms. This can be daunting and sometimes frustrating.

As with other Chronic illnesses, patients who live with CFS/ME must learn to manage their illness. Daily living becomes a juggling act. But with a few easily implemented tips, it can become easier:

  • Low-impact Exercise done regularly, i.e. walking, Tai Chi, swimming, Yoga, Pilates, etc. It will keep you active & strong.
  • Pay attention to your diet. It’s your fuel. The Mediterranean Diet has been helpful to many CFS/ME patients.
  • Puzzles, Word games, Trivia, etc. will keep your memory sharp.
  • Adjustments to your workload may be necessary, i.e. PT instead of FT, etc. About 50% of all CFS/ME patients remain in the workforce.
  • If you need help, ask for it. Friends, family, co-workers and Support Groups can play an important role in CFS/ME management.

Last, but not least, it is important to keep your expectations realistic. Anyone with a Chronic illness will tell you that overdoing it, pushing yourself, and/or ignoring your illness/symptoms is a recipe for disaster. Be kind to yourself. Make the necessary changes. Stay optimistic. Move forward. Progress, no matter how small, is still a step toward better living. The triumphs do add up. And remember … every day is a gift. Some are better than others. But when you’re living with a Chronic illness, it’s key to make the most of each one. Whether it’s a day of rest in your jammies, or a day doing something really special, it’s important for your well-being. Enjoy it!

 

Reference Links:

https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

https://www.womenshealth.gov/a-z-topics/chronic-fatigue-syndrome

https://ammes.org/diet/

https://www.webmd.com/chronic-fatigue-syndrome/tips-living-with-chronic-fatigue#1

https://www.huffpost.com/entry/low-impact-exercises_n_1434616

https://www.healthline.com/nutrition/mediterranean-diet-meal-plan#foods-to-eat

*Photo by Kevin Grieve on Unsplash

 

Fishing For Our Youth …

My uncle used to love to fish. Even when his body was struggling with Chronic illness and he needed a walker to steady himself, he found a way to go fishing. I asked him, once, “What are you fishing for?” I suspected trout, walleye, or crappie. Maybe, catfish. All were common in the waters of Missouri. With a sly grin and a chuckle, he replied, “My youth!”

For those living with Osteoarthritis, or OA, life may feel like one long fishing trip … day after day … week after week … searching … fishing for their youth. The aging process happens to all of us. Some more quickly than others. One day, we are in our prime. The next, we’re getting a certain card in the mail — officially labeling us as “Seniors”. And while we ponder how time took advantage of us … fooled us … turned us into silver versions of our former selves, we must also deal with what it has done to our bodies. Age plays a significant role in many health issues, including OA.

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Osteoarthritis affects about 27M Americans and globally 300M. It is a degenerative joint disease and the most common Chronic illness of the joints. Although people of any age can get OA, it’s usually diagnosed in those over age 65. It is also the leading cause of disability in Seniors. But, please, don’t panic. Every case is different. Most patients will not require joint replacement surgery, in their lifetime. Some will. And while there is no way to reverse the damage done by the disease, there are ways to help OA patients live better.

If you have been recently diagnosed with Osteoarthritis, your Rheumatologist will discuss treatment as well as lifestyle changes with you, i.e. losing weight, reducing your cholesterol, regular exercise, eating healthier choices, medications, etc. As with any Chronic illness, your mindset is extremely important in dealing with OA. Optimism isn’t always easy, especially if you are battling pain and mobility issues. Some days, you may feel pretty overwhelmed. But hang in there. Be patient. Make some changes. You are worth it. You might even be surprised at what you can accomplish … enjoy … and share with others. No, you can’t reel in your youth. None of us are that lucky. But you can feel better … have less pain … be happier … and continue to stay active. And like the millions who are taking this approach, you can enjoy living!

 

 

Reference Links:

https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Osteoarthritis

https://www.arthritis.org/about-arthritis/types/osteoarthritis/what-is-osteoarthritis.php

https://www.mayoclinic.org/diseases-conditions/osteoarthritis/symptoms-causes/syc-20351925

https://www.arthritisresearchuk.org/arthritis-information/q-and-a/living-with-arthritis/hobbies/does-flying-and-cabin-pressure-affect-oa.aspx

https://www.medicalnewstoday.com/articles/322603.php

*Photo by William Malott on Unsplash

PT & Chronic Illness Management

What would your reaction be, if your physician suggested Physical Therapy? Would your jaw drop with shock? Would you be frustrated? Confused? Maybe, eager? A lot might just depend upon your perception of Physical Therapy. Most people think of Physical Therapy, or PT, as a postoperative step toward recovery. Others may equate it to a few weeks of treatment following a specific health issue like a stroke. But it is also used for the management of many Chronic illnesses, i.e. Fibromyalgia, Diabetes, various forms of Arthritis, Chronic Pain, COPD, Parkinson’s, etc. Since we know that managing any Chronic illness is the key to living better and healthier, perhaps now is the time to look at the big picture? Think outside the box — beyond any preconceived notion. Talk to your doctor. It’s time to consider what PT can do for you!

 

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If some of you are feeling apprehensive about this idea, I get it. I completely understand. Doctors. Tests. Medicines. Symptoms. Family. Work. You are already doing a juggling act. And it isn’t easy. Physical Therapy is like adding another ball to the mix. But if PT allows you to move more freely … juggle the rest more effectively … isn’t it worth trying? Of course, it is! This is your life that we’re talking about. You want to be able to enjoy it and make the most out of every day.

PT isn’t the Boston Marathon. But it is a way, through simple exercises, to live healthier. Some patients are referred to a physical therapist, by their family doctor or specialist. Others make contact on their own. How you do so may depend upon the requirements of your health insurance. Since physical therapists are licensed healthcare professionals, most plans cover physical therapy, i.e. Medicare, private insurers, etc. A quick phone call can let you know how you should proceed.

Let me put it this way, we already know that exercise can help Chronic conditions. We know that it can prevent many of them, too. Think of PT as a “medical gym” and your physical therapist is your personal trainer. He or She isn’t going to push you beyond your limits. Nobody wants that. They are going to teach you exercises specific to helping your Chronic condition. You will do these exercises together and by yourself at home. And you will see as well as feel the results. With time, you may do additional exercises. You may feel like branching out to swimming, yoga, walking, Pilates, Tai Chi, etc. Perhaps, you’d like to travel? Take your grand-kids camping? Or return to that Saturday golf-league that you once enjoyed? Maybe, you just want to feel better and happier? Discuss your goals with your doctor and your physical therapist. They can help you to reach them.

Millions live with Chronic conditions. They do more than exist. They thrive. They do so by effectively managing their illnesses. It’s time to join them. Let this be the year that you start feeling better — regain control. Live! The choice is yours!

 

Reference Links:

https://www.medicalnewstoday.com/articles/160645.php

https://www.moveforwardpt.com/Resources/Insurance/Detail/understanding-payment-physical-therapy-services

https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/exercise-and-chronic-disease/art-20046049

*Photo by Jesper Aggergaard on Unsplash