It is true, the healthy don’t understand what it means to have a chronic illness. I used to get upset when my friends would say, “Hey, I’m...
As one might expect, navigating life with an invisible illness is one challenge followed by another. Beat one. Greet one. Every. Day. Nothing prepares you for the...
An NIH study points to autoimmunity as the underlying cause of more than a hundred life-altering, chronic illnesses and that 75% of those with autoimmune disorders are women. ...
Patient engagement is a trendy topic for healthcare providers – the latest spin terminology for “patient compliance” – as in how do I get patients to follow...
Zebra Retreat. No, it is not a new safari resort in Africa. It is not a ride at Disney. Not a new game rivaling Angry Birds. And...
“Living with a chronic illness is hard. Some days, navigating the healthcare system is harder. I am a nurse, looking at healthcare from the other end of the stethoscope. Join me.” As a young nurse in 2011, Sarah Beth Cowherd, RN began blogging about her experience in healthcare. She wanted to explore how a new generation of nurses were changing the face of healthcare through the use of technology and social media. Soon after launching SarahBethRN, Sarah developed a rare autoimmune disease called CIDP and autoimmune autonomic neuropathy…
Being sick changes you.
For a host of different reasons, I’ve caught myself daydreaming recently–remembering moments in my pre-sick life where I felt normal. My sense of normal was pretty ridiculous. I used to travel a lot.
I’ve been white water rafting on the Nile River in Uganda.
I went “surfing” off the Pacific coast of rural Nicaragua.
Spent the night in the executive lounge in the Amsterdam airport.
Strolled the tea fields outside Nairobi, Kenya.
Went deep sea fishing in Aruba.
Napa Valley. Sedona. Chicago.
Karolyn Gehrig has an invisible illness, but #HospitalGlam makes her feel less invisible. Her recent feature on Huffington Post says she was diagnosed with Ehlers-Danlos Syndrome, a genetic connective tissue disorder in 2003 and has since had many hospital visits, doctor appointments, and various medical testing–something those of us with chronic illness are very familiar with.
Others with chronic illnesses have joined in on Twitter– sharing their own #HospitalGlam experiences.
I will have to be more intentional on taking glam photos at the hospital. I’ll submit my first now:
As the New Year is upon us, I can’t help but think about resolutions, goals, the future–and what that will look like. For the chronically ill, the future doesn’t necessarily seem so bright. The New Year may not always seem so hopeful.
Recently, it was New Year’s Day. I saw a ton of New Year’s Resolutions on Facebook that were simple, yet flawed in my opinion. “I hope you have a happy and healthy year.” “This year, I will live a healthier lifestyle.”
I’m also at that time in life where a lot of my friends are having babies. And so many times I hear, “I just want them to be happy and healthy.”
These statements have huge implications for those who are sick. If being “happy and healthy” is all you want for your children, what happens when they get sick? If what is important this year is that we get healthier, what happens when you get sicker?
Health can’t be our end goal because for some, that may never come.
We need a better resolution because this could be the year you get cancer. It could be the year you injure your back. It could be the year you find yourself like me, not a practitioner, but a patient.
And I don’t say that lightly. I know it sounds depressing, and gloomy, and not ‘glass half full’ thinking. And it may be, but it is realistic. It is the truth. We don’t know what is coming, and if health is our resolution, if health is all we want for our children, for our future, what are we left with when affliction comes?
Rather than resolving to be healthy, I resolve to:
So this year, instead of seeking health above all else, may we resolve to be better people, better mothers, friends, children, spouses. May we seek to be stronger willed, better minded, more faithful.
Let us strive, not for health, but for wholeness.
I wanted to give you a road map: How to get through the Holidays when you have a chronic, sometimes invisible, illness.
I started with good intentions, but I’m finding it difficult to find the words. I’m finding it difficult to come up with tangible things we can do to help us survive the Holidays while living with invisible illness. A check list of sorts.
The truth is: It is difficult this time of year when you are sick. The year is coming to a close, and as we think back over the year that has passed, we often times are left wanting. Thinking about what could have been if we felt better. Wishing we could have accomplished more. Wishing for health in the year to come. Wishing to experience the magic of the season as we have in years past.
Dignity Health recently put out an infographic detailing the effects of kindness on patients and healing. They suggest that when healthcare is given with kindness and compassion, patients have better outcomes and faster healing. Makes sense in theory, but having hard numbers to back it up is pretty interesting.
What stood out the most to me was this: “The statistical significance of kindness-oriented care on improved health outcomes is LARGER THAN THE EFFECT OF ASPIRIN ON REDUCING A HEART ATTACK, OR SMOKING CESSATION ON MALE MORTALITY” (infographic).
Last week was a strange week. It felt a little bit like groundhog day–with a prediction of six more months of winter.
About six months ago, I started infusions of IVIG for the treatment of Autoimmune Autonomic Ganglionopathy. Better today than I have been in the past three years, I would say the treatments are working. (Speaking of three years, Saturday marked year three of my sickness). Unfortunately, my improvements come at a price: the IVIG causes me to be very sick. Sometimes the reactions aren’t so bad, but other (most) times, I have a severe inflammatory reaction of the lining of the brain and spinal cord, known as aseptic meningitis. This causes out-of-this-world headaches, neck pain, nausea, visual changes, and pretty much the inability to do anything but lay in the fetal position. I take steroids to counteract this reaction, but unfortunately, if I take them, they also counteract the benefits of the infusion itself.
Needless to say, these past six months have been some of the worst days and some of the best days I’ve had in the last three years. Pain and misery from the infusions on one hand, and on the other, I’ve been able to do more than I ever have and I’m off the majority of medications I was on (which is a ridiculous thing to say if you know how many I used to have to take).