To the People Who Think My Pain Is 'No Big Deal'

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Many conditions of chronic illnesses are often glossed over because they do not sound that painful or difficult to deal with, and the person may even look well. Are they just being “lazy” and “faking it”?

Prior to experiencing these symptoms for myself, I might have been guilty of certain ignorant and unkind thoughts within the privacy of my mind.

1. Joint Aches

“It’s one of those little things that old people complain about. It’s just an ache, not even a ‘real’ disease, how bad can it really be?”

That was before I developed rheumatoid arthritis and learned just how terribly wrong I could be. I learned that it isn’t just a “little” pain, but a debilitating one. Your elbows, knees, wrists, ankles and all other joints can puff up into a sensitive, red swell, where the slightest alteration of angles, an accidental brush against any surface or doing tasks such as fastening your bra can trigger intense pain.

Forget about “light” exercises — you might have trouble even walking to the bathroom. Someone I know suffered these horrid aches for four years, and she had to go up staircases by sitting and pushing herself up one step at a time, every day.

2. Muscle Aches

“Is it like a muscular ache you get after exercising?” This is the most common question I get from curious friends. (Thank you for asking!)

“That muscular ache can feel quite good, actually!” Unfortunately, this muscular ache does not feel good in any remote sense of the word. In fact, for me it is worse than the joint aches.

But what does it feel like? In all honesty, it feels as if there are thick nails pounding through my muscles deep into my bones, relentless in their drone-like repetition. It is severe enough to keep me up all night.

3. Dry Eyes and/or Mouth

You’d probably imagine this to be more of an annoyance than anything else, but it can actually make a tremendous impact on the quality of your life. Having dry, inflamed eyes is like having sand scratch against my eyeballs all day long. I used to bathe them in eye drops from morning to night, but the relief provided only lasted for that brief moment of contact.

Having a dry mouth is a bigger torture to me — a million tiny pins piercing through the surface of my tongue, throat, cheeks and lips, with a burning sensation, as if sucking on chili, thrown in for good measure.

Who would have thought that one’s moisture level, which seems like something that could be easily restored either through natural or artificial means, could be so deceptive in its ability to cause pain?

It is not uncommon for me to be kept up by such conditions late into the night, and if I do manage to drift off to sleep, it’s usually from the exhaustion that comes with enduring too much pain.

To those of you who can relate, what other symptoms or side effects did you think were “not such a big deal” prior to experiencing them personally? And to those who are curious about other symptoms — what else would you like me to try describing?

Follow this journey on A Chronic Voice.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When You Get That Dreaded Phone Call From Your Doctor

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I got the dreaded phone call from the doctor on Monday. If you live with a chronic illness, you’ve likely gotten it before: “We need to discuss your blood test results.” I know what this phone call means. It means something has gone wrong.

I remember the first time I got this phone call. I was 29 and had been experiencing sore joints for a couple of weeks. My doctor said it was just a virus, but he’d run some blood tests to be sure. About four days later, the medical practice asked me to come in to “discuss your blood test results.” Not long after that, I was told I have rheumatoid arthritis (RA), and my world crumbled for a while.

Over the next couple of years I received the call again and again: “We need to discuss your results.” Never once did those results end well. Generally, they led to more medication or scans or, at one point, to major surgery. I learned to dread seeing my phone ring a few days after I had tests done. The emotions it would raise were horrendous, and just from a simple phone call. I remember one time when I saw my phone ring and it was the specialist’s office, I burst into tears and just stared at my phone for an hour before I could bring myself to call them back.

About nine months ago, though, my phone didn’t ring following my RA monitoring blood tests. When I saw my doctor I finally received the news I had been dreaming about — my RA was in remission! It was like being able to breathe again after being weighed down by RA for a couple of years. Over the last nine months, the monitoring blood tests have continued, my phone has stayed silent and I have rebuilt my life into something I am very proud of.

Then on Monday, the phone call came and my world fell apart. It’s hard to put into words just how shattering it is to be facing another flare of RA. Even before I have confirmation that my RA is flaring, all the old emotions have surged to the surface. The fear, the doubt, the sadness, the anger — all triggered by that phone call and by those words that are the siren song of ill health: “We need to discuss your results.”

I will say that I have found one small positive from the dreaded phone call — it prepares you for what comes next. As I ready myself to see the specialist next week, I have had a chance to prepare my mental defenses. I have the opportunity to give my support network the heads-up so they know they might need to provide extra support if the news is bad.

Most importantly, it’s given me the chance to remind myself that I have fought and won this battle once before, and I can do so again.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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My Body Is Not My Enemy

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“It is a radical act of love to
befriend yourself.”
~ Jon Kabat-Zinn

Words are powerful.

I learned that as a little girl the first time someone made me cry on the playground by saying they didn’t want to be my friend. I learned it again when I was a little older, fighting with my brother in the back seat of the car; I told him my parents didn’t love him as much as they loved me. My mother immediately stopped the car and told me in no uncertain terms that it wasn’t true, and I was never to say such a thing again. I also learned the power of positive words: accepting compliments without rejecting them (it took practice), and as a young woman in the midst of first love, experiencing the fear and the bliss of saying “I love you” for the very first time, and hearing those words in return.

I’m a writer and an avid reader. Words are my joy and my outlet. But some words I reject, specifically the ones the medical establishment assigns to autoimmune disease:

  • Your body is attacking you.
  • Your immune system is out of control.
  • Your body is broken.
  • Your body has betrayed you.
  • You will continue to get worse.

When I developed rheumatoid arthritis, my sister started doing some research. “Eileen, it’s like your body is now your enemy,” she told me.

I don’t accept that. I have a different perspective.

  • My body wants to heal and is doing everything in its power to do so. Autoimmunity is a miscommunication within the body, not an intentional war within.
  • Symptoms are my body’s way of telling me something’s wrong and asking for help. I had many signals for many years before rheumatoid arthritis hit. Like many people, I misinterpreted or ignored those signals.
  • My body does a million things right every day which I take for granted. From a steady heartbeat and oxygen supply, to trillions of cells doing zillions of processes every second, sending signals bodywide that let me move my fingers to type these words, allowing me to speak, to sleep, to sing and to love, controlling all aspects of homeostasis from body temperature to cell regeneration, my body is amazing and is totally on my side.
  • My body needs my love, not my anger.
  • My body’s potential is infinite.
  • My body and I are one. There is no separation.

This isn’t a Pollyanna viewpoint. It’s hard  having an autoimmune disease. Even though many of us speak of the gifts that come with life’s challenges, let’s be honest: we’d much rather be 100 percent healthy. Some days, you need to cry. Other times, you want to scream. But I don’t hate my body, I don’t blame my body. Every day, I recommit to loving my body, and I believe that’s essential to healing. If your child is sick, do you get mad at them or do you nurture them, doing everything in your power to help them be well? Don’t our bodies deserve that same unconditional love? Don’t we?

A painting of a purple woman holding a pink heart to her chest. There are rainbow mountains in the background.

A version of this story originally appeared on Phoenix Helix

Illustration by Rita Loyd of Nurturing Art (used with permission)

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The Impossible Choices People With Autoimmune Diseases Face

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For those of us struggling with autoimmune disease, Glenn Frey’s death hits especially hard. In case you haven’t heard, Mr. Frey had rheumatoid arthritis (RA) for 15 years. According to his manager, Irving Azoff, Mr. Frey had long taken drugs to slow the progression of his RA and ulcerative colitis, which caused him to contract pneumonia and caused his death. RA medications called “biologic agents” work by targeting the body’s immune system, and experts suggest a suppressed immune system could have led to Mr. Frey’s lethal combination of illnesses.

This news illustrated the often impossible choices RA and other autoimmune patients face, and it was a vivid reminder of my own harrowing experience. The biologic drugs I take for severe RA also weaken my immune system. In early 2012, I found myself unable to fight off that most common of winter illnesses, the flu. After 24 hours of rapid decline, my (now) wife forced me to the emergency room. There, I was diagnosed with septic shock. I required life-saving measures. ER doctors inserted a central line on the spot, because I couldn’t wait for an operating room. As my blood pressure dropped to dangerously low levels, I was given vasopressors to artificially boost it. I spent the next few days in the ICU, and the next few months recovering. We were later told that, without treatment, I would very likely have died within 24 hours.

This is the catch-22 of current treatments for autoimmune disease. Without biologic drugs, many people with these diseases cannot perform daily tasks or even get out of bed. With them, our immune systems are suppressed, so we are at a greater risk of developing other illnesses. And if we do get sick, our immune systems are so weakened that our bodies have a hard time fighting back. This is far from the only issue. Biologics are costly and generally not an affordable choice for those without insurance. Even with insurance, out-of-pocket costs can be prohibitive, and insurance approvals can take weeks or even months.

two blonde women's faces
Jessica (left) and her wife

These medications do not cure our diseases. Despite the plethora of advertisements, biologic drugs often provide only partial relief, and sometimes no relief at all. To date, I have failed almost every biologic available for RA, going through a months-long trial-and-error process for each new one I try. Given all of this, it’s easy to understand the love/hate relationship autoimmune patients have with these powerful drugs.

Thousands of RA stories, like Mr. Frey’s and my own, motivated me to start an awareness-raising blog in January 2011. They are why I constantly seek new Eastern and Western options for treating my disease. They are why I fuel my body with the best nutrition I can every day, to give it the best chance to fight back. They are why I practice gratitude daily and strive for a healthy, positive mindset.

Biologic treatments are a key part of my toolkit in the fight against chronic autoimmune disease. And I am grateful that, most days, they help me get out of bed. But Mr. Frey’s tragic death is a sobering reminder of the seriousness of these illnesses and their associated medications. It’s a reminder of the difficult choices we make, and risks we take, in our individual fights against autoimmune disease. And they underscore the reasons why we must keep searching for better answers.

Thank you for the music, Mr. Frey. Rest in peace.

Editor’s note: Please see a doctor before beginning or ending any medication.

Follow this journey on Rude Awakenings: Life With Rheumatoid Arthritis.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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A Peek Into the Mornings of a Chronically Ill Mom

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I believe parenting can be hard in all situations. Wanted to get that out of the way, first off. My kids are little angels sent straight from heaven, but they are also horrible monsters who daily chip away at my tiny bit of sanity.

couch, red blanket and table with laptop
Stephanie’s “nest”

So, most mornings, we get up, have the eternal battle of whether or not my kids have to get out of bed (yes), get dressed by themselves (mostly no) and brush their teeth (most definitely yes), followed by the shoe and jacket debate/debacle. Sometimes I can actually do some of this stuff to help them, and sometimes they have to suck it up or sucker their dad into doing it.

Then, on days when I can drive, I fight the kids into the car (unless I can talk my husband into taking that fight) and drive the short drive to my eldest’s school. Then unpack, argue with the 2-year-old about why she can’t just stay at school, find whichever station of the classroom she’s hidden herself in so I’ll totally forget her (not happening), and pack back up in the car. Get home, eat the easiest thing that qualifies as breakfast (Clif Kid bars, cereal, yogurt or some combination thereof), then rest. For reference, that photo above is of my own personal nest.

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Emeline playing with Stephanie’s hair

Unfortunately, my little one, Emeline, does not need a rest after that small amount of physical exertion. Since I quit work last year, we’ve developed a few fun things to do on or near the couch, which basically includes coloring, reading books, doing learning exercises, dressing up and playing doctor or hair salon.

Because I am also living in constant brain fog (I’m not entirely sure if it should be attributed to parenting, rheumatoid arthritis, medications or all of the above), my kids also get away with some things in the meantime. This morning, it was lipstick. The picture isn’t super clear, but it is a shimmery pink shade all over her little lips.

girl wearing pink shirt and short brown hair
Stephanie’s daughter wearing lipstick

I am assuming my other daughter, Nora, looked similar this morning, but her teacher didn’t mention it and it was gone by the time I picked her up, so… I’m going to pretend she didn’t.

Then my husband Ben comes home and makes us lunch because he is an awesome cook and I am still recovering from drop-off.  Sometimes there is a little laundry or dishes or vacuuming in there, but mostly my day is just recovering and resting up for things.

Just a little morning in the life of a chronically ill mom.

feet up in play room with tv
Stephanie resting at home

Follow this journey on Positively Rheumatoid.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. 

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When You’re Forced to Compromise Your Health for Insurance

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I want to discuss a growing problem for many who live with chronic illness. This is a growing issue that poses a particular problem with those who require ongoing medical care, but it is affecting a large number of people.

I have rheumatoid arthritis. I was diagnosed in December 2014. I began treatment after my initial appointment with a rheumatologist in April 2015. Within this last year I have started therapy with multiple medications to help control the disease and slow the destruction of my joints. Unfortunately, the time required to wait for my initial rheumatologist appointment combined with the severity of my disease (which had already destroyed multiple joints) left me needing multiple surgeries. Disheartening still was realizing at the end of 2015 that I would no longer be able to afford my health care, with insurance.

I’m not the only one. In a recent thread on social media, a friend shared how upset she was about the $800 bill she received from one test during a recent trip to the children’s hospital with her daughter. This sparred a conversation with numerous other people who were experiencing the same thing. All those responding had insurance with high deductible plans. The families and their employers are paying premiums for plans that don’t pay anything until a deductible of several thousand dollars is met. This is sadly becoming the norm for families like mine that live on a limited budget and don’t have the money to meet the financial burden required to use the health care system.

I have disabled child and I have a chronic illness. Thankfully, our state offers assistance to children with medical disabilities that helps assure my son doesn’t go without the medication he needs. But the system isn’t perfect. Social security and insurance isn’t automatically provided to underage children with disabilities. Many times the only coverage is through private insurance. I can recall many of our own horror stories as well as those of other parents with children with special needs who have had to fight with insurance companies, only to run out of medication for our children. It isn’t right.

I spent the better part of December wondering how I was going to continue my medical care. We have since received generous help from friends who helped meet some of our financial needs, but we still don’t have enough money to pay for the doctor’s appointments and medication I require. Now we have to see if my doctors will work out payment plans, see me less often and reduce my medications to help me try to meet the financial demands of my illness and those of our family.

I guarantee many people are lying in bed with the same worry: How can I afford to pay for my care and still buy groceries or pay my mortgage? I know because I’ve talked with them. Parents are sick over the large bill they received because their child had an unexpected visit to the hospital, the caregiver to an aging parent is worried because they have to figure out how to pay their mom or dad’s mortgage while they spend time at a nursing home in rehab, or a parent of a child with severe epilepsy is crying because their insurance company is using every last tactic to stop shipment on the only medication keeping their child seizure-free. How is any of this OK?

Is anyone else ready to speak out about this? I hope so, because no one should ever have to compromise their health care. Sadly, this is happening every day.

Follow this journey on CrossRoadTrippers.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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