Navigating Chronic Illness

To my Dear Readers,

This post is much longer than I had originally intended, and I toyed with the idea of breaking it into 2 or 3 posts. In the end, I decided to leave it as one post. After originally posting this 6 months ago, I decided to update and repost it in honor of a fellow blogger who is going through a very similar struggle.

When I was in the thick of my chronic illness journey, I had a tough time finding information and suggestions for those with skin conditions resembling mine. I hope that this gives each reader a bit of comfort wherever you are with your health, and your life. You are not alone.

The past twenty four months have held some big changes: wonderful new career opportunities, letting go of a beautiful but beyond-our-budget house, and battling two different forms of dermatitis that appeared suddenly and would not go away.

When my skin flared, I consulted with five doctors, went on an extreme elimination diet*, threw out almost all of my cosmetics, deodorant, perfumes, and even fluoride toothpaste. I tossed good deal of clothing as well (due to dyes and some synthetic fabrics). Through it all, my embarrassing conditions only seemed to worsen, and were accompanied by itchy, dry skin that often felt like I had first degree burns, and utter exhaustion.

I grew up with dishidrotic eczema on my hands. For years I struggled with blistering, cracking, and dryness that only prescription corticosteroids seemed to help. In desperation in 2010, I tried going gluten-free. This “fad” was in its infancy then, but I had nothing to lose in giving it a try. To my great relief, I found that gluten-free living vastly improved the condition of my hands, and I no longer needed cortisone. Smooth sailing until May of 2015.

By the spring of 2015, my husband and I had moved our family to central Wisconsin. I was two months into a job at a copy and print shop when all heck broke loose with my skin. My hands developed nummular eczema, which has a charming resemblance (but is in no way related) to ring worm.

By August, there was an angry red rash on the skin above my upper lip which developed into a ring all the way around, which dermatologist coldly referred to as “Clown Mouth.” Note: This brilliant, well-meaning, but frustratingly smug doctor will hereafter be referred to as “Dr. Doom”.

Dr. Doom emphatically reassured me that my clown mouth was in no way related to the nummular eczema on my hands. Wow, a mysterious double-whammy. Thanks Doc, I feel much better. 

These two new skin conditions were embarrassing, physically uncomfortable (often painful), and emotionally exhausting at best. At times they were downright frightening, as when Dr. Doom told me I needed a biopsy to rule out cancer, after a second patch test turned up no new information.

I hope that my journey and what I learned from it will help you in any small way it can be useful.

Lips in full flare, September 12, 2016

Face pre-biopsy: Blood tests and a biopsy confirmed that this is “only” dermatitis. I say “only” because it is in fact chronically dry skin and not something worse. It is chronic however, meaning that unless the food or object/material I am coming into contact with is identified and avoided in perpetuity, it will likely persist. (Note: the blue marks on my bottom lip above are the pen mark for where Dr. Doom took out a chunk to do the biopsy, right after snapping this photo).

Just the Facts, M’am

Illness and injury are always difficult. Chronic illness is often extremely draining, as it drags on and on, changing our concept of “normal”. Sometimes we recover only to be knocked down again after the respite. In either case, the effect is often demoralizing. This is especially true when a diagnosis is elusive.

On top of being worn down, not knowing what is wrong sparks anxiety, compounding the problem. I have learned the hard way that self-diagnostic websites like webmd.com are a double-edged sword. How many of us have turned to the website’s symptom checker only to come away convinced that our time on earth is in serious jeopardy?

I encourage you to get facts. Facts, whether good or bad help to ward off anxiety, as they give you something to work with. Guessing all alone with a symptom checker, or ignoring an issue and hoping it will go away is not helpful, physically or emotionally. This means seeing the appropriate professional for a diagnosis. Knowledge truly is power in this case.

It’s Not All In Your Head

While I do caution you not to catastrophize after a spin through symptom-checker lane, you DO need to trust yourself enough to acknowledge when something is wrong. The first doctor I consulted (an allergist) about my lip dermatitis told me I simply needed to stop licking my lips. Seriously, that was his solution.

My instincts told me that lip licking was not the problem. Something more serious was going on. I realize that my current health struggle pales in comparison to the health concerns of many. At the same time, there are those who have not had to deal with any form of chronic illness, let alone on their face. In the broad scope of life struggles, most of us fall somewhere in the middle.

Being in the middle does not make you average in a negative sense. It does not diminish your struggle. Rather, it reaffirms that you are not alone. Take comfort in that. I am glad that my dry skin is not something worse — and I am going to do everything I can to get back to health and stay there.

Muster Your Inner Parent

Don’t minimize your symptoms or invalidate your instincts. Don’t let your doctor invalidate your instincts. Be sure to stop and ask yourself if what you are being told by your doctor really resonates with you. If not, don’t feel as though you would be rude to get another opinion. Doctors will not feel the least bit rude to bill you for their services, so make sure you find one that you feel comfortable with. YOU know you better than anyone, you have to step up and be your own advocate. You must be brave. We all have an inner lion. I know you can call on yours to speak up for yourself with dignity and calm strength.

I found my brave when I realized that if one of my children were struggling with his health, I would have no problem whatsoever speaking up. I would be persistent and I would not give up if I met with apathy from someone from whom I needed answers. I began to be my own “inner parent”.

Bravery takes many forms and looks different depending upon your circumstances. For me brave was challenging my allergist to dig deeper than “lip licking” and give me a skin prick test (which began to reveal food allergies). It was then transferring my records to a dermatologist when the allergist was apathetic at best about my condition. It was asking Dr. Doom lots of questions about nutrition, even when he made it clear he was convinced my sudden skin issues had nothing to do with what I am eating.

I find it illogical that what we put into our bodies is unrelated to how healthy our skin is.

Dr. Doom “gave up” on me after the biopsy revealed I am cancer-free and referred me to UW Madison’s elite dermatology department. They performed my third patch test, refined my ongoing list of allergens, and sent me on my way with a handy phone app that uses my allergen list to provide an ongoing “safe” products list I use to shop with. It was at this point that I turned to nutrition.

I didn’t just guess about the nutrition connection. I committed to hours of nutrition podcasts as well as to over 20 hours of nutrition audio books. What I learned confirmed the strong tie between diet and health, both internal and external. This bolstered my bravery in challenging the doctor with potential dietary connections to the dermatitis. When he remained unconvinced, I agreed to follow my dermatologist’s instructions, while my bravery enabled me to consult a functional nutritionist to look into my diet as well.

Bravery comes in many forms. Brave is going to work with a rash on my face when I just wanted to hide under a rock. Brave is eating foods that are delicious — but that I knew would cause my condition to flare for days or weeks — so that the results could be measured by a nutritionist. Brave is politely telling my friends that I can’t “just have a bite” of something they are eating, even if my abstinence at this time is based more on instinct than medical proof.

Don’t judge yourself as to what should be “easy” or not be a big deal. Love yourself through the hard parts, and try being your inner parent to find the bravery you need to keep going. Remember that you are not alone. There are online groups for just about every struggle that will confirm this. You may find that seeking out one of these groups may fortify your bravery.

Be Your Own Financial Warrior

Bravery is also key before and after the medical bills arrive. In my people-pleasing brain, challenging medical professionals on how necessary a test is and how many tests need to be done how quickly is terrifying. Just learning to voice my financial limitations and asking for more of a doctor’s time to plan a course of action on a schedule I could afford has taken a lot of bravery.

The fact that each patch test I have had to undergo in my quest for a diagnosis cost approximately $4,000 certainly helped me find my “moxie”. Medical tests are too expensive to just agree to everything put before you without asking questions — before you have the tests, and even after the bill arrives.

There is no shame in verifying a bill with insurance. This has saved us nearly $2,000 in the past year due to billing errors. In addition, every medical billing office I spoke to was more than willing to arrange an affordable payment plan. To do this I had to be brave enough to:
1) Open the bill and look at it (As with your symptoms, not looking at the bill won’t make it go away).
2) Be pro-active: Call the billing department to arrange payments before I got behind.

In short, brave is pushing on when you are tired. It is speaking up for yourself as you would for a loved one. I am here to encourage you took toward the horizon to the goal, and keep on walking. Bravery is finding stamina when you think you are out of gas.

Friends Can Bolster Your Stamina

When you are gnawed at by a health problem that won’t go away, it can be easy to lose heart. I have had my share of tough moments. Since most of us are trying not to burden others with our health concerns, we are probably far more in danger of isolating ourselves than we are of being a drama king or queen.

We all need to be comforted sometimes. We are not made for isolation. We are mammals, we are human mammals. We are made for connection. Trusted friends can help you to find the humor in your challenges. They will also be your cheering squad to celebrate the small victories along the way. Pretending to not need anyone when you are frustrated, emotionally exhausted and quite possibly suffering from pain is not good for you or your friendships.

Allowing your vulnerability to come through to someone who has earned the right to see it can be a step toward growth and healing on a level you may not have realized you were in need of. I learned that asking my husband to come with me to my appointments is good for me. It is also good for our marriage. Not only is it helpful to have another set of ears, but it is comforting for me and shows him that he is needed.

It has taken me years to see the value in asking for company on doctor visits. I used to think about it in purely practical terms, afraid to inconvenience anyone. Now I see how asking for company brings my husband and I closer, even if we both have to take a day off. I have also begun a new tradition of a weekly coffee date with my mom at our favorite café. This has grown our relationship, given us a weekly event to look forward to, and created memories we will cherish.

Telling the people closest to me how much I love and need them has deepened our bonds. Why wait until some big hairy event (or illness) comes along to show that to them? Ed Young, my favorite favorite pastor, has a great series about prayer. In it he reminds us not to fire off “microwave prayers” to God — rattling off a 10 second demand for some emergency to be squelched, then forgetting about Him until the next emergency arrives. For me it is just as vital to not engage in “microwave friendships.”

The bonus of learning to reach out before you need to is that your friendships will be more balanced and rewarding for both parties. Try though we may to have equal turns “sharing” our thoughts, fears, hopes and dreams, when a crisis hits, the suffering party is naturally the one who will need, and thus command more of the attention. This is to be expected. If you nurture your friends on as regular a basis as possible, there will be much less wear and tear on your friendship when the situation becomes necessarily more one-sided.

If the idea of showing vulnerability seems completely foreign to you, but you want to learn, try Brene Brown and Koren Motekaidis.

Don’t Forget to Be Your Own Best Friend

It is important to treat yourself gently, both physically and emotionally, when you are suffering through a chronic illness. This includes paying attention to your energy level and prioritizing how you spend it. Be the tortoise instead of the hare right now. Make a list of all the demands on your time and energy, and then narrow it down to only the absolutes. By stripping your list down to “have-to-dos” and delegating the rest, you can make time for doing things that will add to your peace of mind. This might include a regular coffee date with a close friend, a bubble bath, or quiet time for prayer or meditation.

As mentioned above, I am a Christian. My faith continues to provide me with strength to face life’s challenges. Wherever you are on the spiritual scale, I strongly recommend finding a belief in something bigger than yourself, whether it is religious or spiritual in a general sense. Sitting quietly in nature can also do wonders in releasing anxieties and recharging your soul.

Serve Your Worries Away

Participating in a spiritual group or church can help banish loneliness and fear. When your energy allows, connection to something bigger than yourself through service to others is probably the best way to forget your own troubles. If you are unable to leave your home, you might find a way to serve through the internet, writing letters, or perhaps encouraging others through your own blog! No matter what we face in life, reaching out to both give and receive comfort is a wonderful way to heal your spirit and fortify yourself for the road ahead.

Lips a month post-biopsy, October 9, 2016

After three patch tests, a skin prick test, blood work, and a biopsy, I had no particular “smoking gun”, and was still suffering from almost daily flare-ups. After turning to nutrition, I was stunned to see that my condition vastly improved after eliminating almost all grains, soy, dairy, and caffeine.

It has taken two years from when my double-whammy skin crisis began to be able to tell you that I am much improved and I have found a new “normal”. This former “glamour-puss” is now content with rarely any lipstick at all. I am more than happy to be free of clown mouth, sporting a sheen of plain old vaseline. I have made friends with my dye-free grey streaked hair, stick carefully to my short but safe list of personal and household products, and keep my diet very, very clean.

Lips July 16, 2017

While I have not included photos of my hands in this post, I will tell you that the large dry patches are almost gone, FINALLY.  The patch tests were valuable in providing the lists of chemicals and metals I need to avoid. I am also convinced that the functional nutritionist was indispensable.

I believe that my multi-faceted counter attack to my multiple symptoms was the way to go. I take nothing for granted, especially since this health crisis appears to be one of keeping enemies at bay, rather than winning one decisive war. This to me is the epitome of chronic illness. It is why ongoing support and self-nurturance are vital to daily wellness.

 I hope that sharing my story has given you some encouragement for whatever chronic experience you may be experiencing.  Please share your own experiences and suggestions. Remember, you are not alone, and sharing your own experiences will not only help you, it will make others feel better. It will make me feel better. Write to me. I am listening.

Love and light,
Caroline

*The elimination diet was done by following the plan in Dr. Peter Osborne’s new book, No Grain, No Pain. I am not a doctor, and recommend you consult your doctor before making any extreme dietary changes. In my case, I had already had blood tests and gotten the “go-ahead” from my doctors to try cutting out foods to see if it helped. They did not think it would matter either way, frankly, and I was eager to at least rule out that I may be contributing to my own rash by eating something that I may be dietarily incompatible with.

Boundaries Are In the Eye of the Upholder