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Most Valuable Lesson I’ve Learned With Chronic Illness

Day 12 Prompt: If you could go back in time and talk to yourself on the day of your diagnosis, what would you say?

If I was able to go back to the day of my diagnosis, I think I would emphasis just how important it is to become an advocate for oneself. Almost immediately after my diagnostic surgery, I began researching my disease so I could be informed and found myself an online support community which I think helped me tremendously in avoiding some of the isolation and depression that can come with receiving a chronic illness diagnosis but I didn’t quite understand the power that I held as a patient in choosing my own treatment. I thank God every day that He provided me with fabulous doctor as soon as I started having symptoms and I was able to be diagnosed within a matter of weeks (when I know most women struggle for years before receiving a diagnosis). Immediately following my diagnosis, she offered Lupron as a course of treatment. My regret is not taking the time to research this treatment before taking it. Something in my gut made me question it but because it was suggested by my doctor, at the time, I didn’t realize I had the option to say no. Looking back and knowing how hard the treatment was on my body, not only during the treatment but for years afterwards, I wish that I had listened to my gut instead of my doctor. In the ten years since my diagnosis, the most important lesson I have learned is to trust my gut and listen to my body so if I could go back to day one, I would definitely offer myself that piece of advice.

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Social Media & The Health Activist Community

Day 11 Prompt: Write about your favorite social network. What is it and why?

Today’s prompt is practically impossible! How on earth am I supposed to be able to choose a favorite social media network? Even outside of blogging the list includes Facebook, Instagram, Twitter, Pinterest, Linkedin, Vine, and I can’t forget Google+ which I have yet to figure out. Each one has unique features, especially as it relates to being beneficial to the chronic illness community but if I had to pick a top two, they would be Twitter and Pinterest.

Twitter is a great way to connect and converse with other spoonies. I have met some great people though twitter parties and by following hashtags. I have been able to find support, encouragement, and laughs. Twitter acquaintances have turned into deep friendships and I am extremely grateful  for that! Twitter has definitely opened up some doors and taken down geographical divides that allow the health activist community to have no boundaries. Although I rarely use the Twitter app. I find Hootsuite much easier to use and manage (it allows you to manage your Facebook feeds as well – both personal and pages – so its 3 in 1 deal!)

Pinterest is just flat out fun. It is a great way to organize thoughts, ideas, and inspiration. It is almost like a digital scrapbook. I love that I can organize awesomeness I find on the interwebs like gluten-free recipes, tips for learning how to use my camera, or  planning out Abby’s 4th birthday party (ack!). With the brain fog that accompanies chronic illness, it is really beneficial being able to organize everything in one place. I love using Evernote to organize my written notes but Pinterest keeps all my visual and digital notes organized! I also love that I can use it to bookmark my favorite blog posts I discover that I may not be able to read at the moment whether due to time constraints or illness symptoms as well as keep posts as references. I keep a wide variety of pin boards active (maybe too many…is there a suggested limit for these types of things?) but my top three areas are all things blogging/design/social media – totally a nerd girl (you check out my list of blogging boards on the blogging resources page); boards dedicated to making life with illness easier (organizational tips, product recommendations, ways to keep your children entertained while you are bed-ridden), and lastly a board for keeping my marriage healthy.

Marriage is hard on its own and with chronic illness thrown in the mix it gets really tough. Currently the divorce rate among couples dealing with chronic illness is 75%. My jaw is still on the floor after reading that. I mean I understand and can see why. During your vows and you said “in sickness and in health” in your mind you picture the two of you old and frail after being married for 48 years but when you are in your 20s and one spouse falls ill and needs a constant caregiver, it changes things. There is stress of the illness, of money to pay for the illness, of the medications turning your once bubbly and active spouse into a depressed and lathargic person you hardly recognize. It is a lot. I didn’t plan to spew all of that out there but I did because it is important. My marriage is important to me and I do not want to be a part of that statistic so I will go all out and fight to keep my marriage strong and continue to edify my husband for being the most amazing husband, lover, best friend, soulmate, and caregiver for me and the most fabulous daddy for our daughter. Through Pinterest I have been able to find ways to strengthen our marriage even when I am bed-bound by turning off the TV and just talking. Not about bills, or my health , or potty training. But to talk about us.

I love that now Pinterest is available on both android and iOS devices so if I’m out at the store, I can easily access that amazing italian crock-pot chicken recipe I pinned last week.  I plan on overhauling and reorganizing my chronic illness related pinboard for a prompt next week so prepare to be amazed!

Now that you know my two favorite ways to connect on social media, what are yours? How do you feel they impact the health activist community as a whole? 

 

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Encouragement for Caregivers

I am so thankful that for today’s prompt my husband graciously volunteered to share about his experience as a caregiver and offer support and encouragement for other caregivers! As we all know chronic illness affects more than just the patient! I am so thankful that God has blessed me with such a strong and tender husband, caregiver, and advocate!

 

Caregiver–it’s easy to imply what such a person does.  Or is it?

Obviously we know caregivers provide care for others (you guessed it!).  Yet it is impossible to understand what all goes into caregiving unless you are personally providing care for someone else.

When we think of caregivers, we tend to think of those who work in nursing homes, hospice care centers, hospitals, etc…  We also tend to think of elderly couples where one person’s health is in serious decline and the other must provide around the clock care.  These are all true scenarios and many others exist as well.  However, there are several circumstances in particular that I believe go overlooked.  Many involve those who care for loved ones living with chronic illnesses such as endometriosis, fibromyalgia, Chron’s, and many others.  This is obviously close to my heart because my wife lives with several chronic illnesses.  The past several years have been very challenging.  In addition to Jamee’s health struggles, we are attempting to raise an energetic three (almost four) year old.  In case you do not know, ALL three year olds are energetic.  It’s just how they are!

So if you are providing care for someone, how can you stay positive?  Healthy?  Sane?  By no means do I have caregiving perfected, but I have learned a lot over time and would like to offer you some encouragement and advice.

You have to take care of yourself
When we’re so focused on taking care of others, we tend to overlook our own well-being.  How can we care for those we love if we are not taking care of ourselves?  Depending on your situation, it may be difficult to find time for yourself and truly care for yourself.  You may be the only one providing care.  Nevertheless, sometimes we have to learn to ask for help and realize life is not meant to be lived in isolation.  Lone rangers end up dead rangers.

Make time to do things you enjoy
This continues m first point.  A part of taking care of yourself is not forgetting who you are (your likes, interests, hobbies, the things that make you feel alive).  For me this means having time (as limited as it may be) to do personal reading, to play guitar, to jam with other musicians, and so forth.  What about you?  Sometimes we end up feeling so numb to the world.  We lose interest in the things we love to do.  If we are not careful, we can end up neck-deep in depression and burnout ourselves.  Again, by taking care of ourselves we are able to better care for those we love.

Talk to a mentor/counselor frequently
I am not ashamed to tell you that once a week, I speak with a counselor.  I am blessed because I live within a mile of Gardner-Webb University (where my wife and I attended undergrad and divinity school).  As an alumnus of GWU, I can speak with a counselor free of charge.  I realize not all people have this luxury.  If you can not afford to talk with a counselor, make sure you are talking with a trusted mentor.  This needs to be someone who you can say whatever you want to say and whatever you need to say to express your frustrations, disappointments, victories, losses, ups, downs, and so forth.  The human body is not meant to hold in certain amounts of grief/pain/loss.

Lean back on your faith
I am not sure about your personal beliefs, but the main way I pull through as a caregiver is plain and simple: the love of Jesus Christ.  I personally believe that God is love (see 1 John 3).  I believe we do not understand what love truly is until we have a relationship with God who after all, IS LOVE.  I do not possess within me the strength, love, patience, and grace needed to care for my wife.  However, Christ does.  By staying connected to Him, I learn how to love as He loves, serve as He serves, encourage as He encourages, and so on.  It is only through my relationship with Christ that I am able to truly love and care for my wife.

I hope some of this helps.  Again, all of this is easy to type, but hard to live out every single minute of the day.  Hang in there.  Do not lose hope.  Cling to the love of God.

God always ~ John

What encouragement do you have to offer caregivers?

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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