/Resilience/: Overcoming Chronic Illness

It came to me in whispers here and there for years – a little blip in my lab work after my first daughter, painful trips up and down mountains, icy cold and painful toes that turned the bluest blue fall to spring, simple rashes that wouldn’t go away…These inconveniences were only that, inconvenient. My full, busy life could not stop for mere convenience.

When you ignore the whispers, they grow and build strength, getting louder and louder. Eventually they scream at you. Like a hot kettle or boiling pot, they won’t be ignored forever. They want to be heard. The obligations of a polite, “Excuse me?” will turn into a, “Listen up!” when you don’t pay them the same courtesy.

It’s impossible to say what might have been, had I taken heed of the whispers. I waited for the screams. There was a time I looked upon this illness (mine is Relapsing Polychondritis with a side of Lupus) as an affliction. I spent so much time hiding it away, only to feel its weight much more heavily only my shoulders. I carried it alone until the burden of it was so heavy, so tiring, that I felt it right down to my bones.

I did not quickly come out of the closet of denial and fear, but little by little, I began to share my story with those who asked or wanted to listen. Experience has taught me that the surest path to healing, is bringing to light what ales us. Shame, embarrassment, fear, denial, illness of any kind –  those things only multiply in the dark. They become stronger. It’s when we quit hiding them away that they lose their power and we can truly be free of them.

Another thing happened when I began to shake off the shame of being “sick” and share my experiences with others, they began to share their experiences with me as well. I’ve learned that so many of us struggle with health. So many carry the whispers, carry the screams. A diagnosis is not validation. There are no contests won by the number of prescription bottles in your medicine chest. Quick fixes from pill bottles are only that, quick. And we have so much more control over our health than we’re often lead to believe. True, sustainable health is found with true and sustainable change, and we have so much more control over our health than we’re often lead to believe. Change can happen all at once, but often it’s a little choice here, a step in the right direction there, one small decision at a time. In the words of Beau Taplin, “Whoever said the small things don’t matter, has never seen a match start a wildfire.” For those feeling exhaustion, pain, sickness – what ever it may be – there are a few universal truths of health that could lead you to better days, as they have me.

I know now that this disease is not an affliction, but a blessing. My life is a stranger to the one I was living when this all began and better for it.

If I could go back to the whispers, what advice would I give myself? First, listen to the whispers. Listen. Then take control of:

Diet

Chronic illnesses are tricky. There’s often not one specific blood test or lab work that can be performed to diagnose and treat. Sometimes doctors are checking symptoms off a list, combined with lab and test results, to make a judgement call about what the most likely cause is. In these cases, the treatment then becomes a judgement call as well, lots and lots of trial and error combined with published studies and information they may be getting from drug reps. In a resounding majority of these situations, the result is a prescription scrawled on a pad that allows a bottle to be filled with pills. We are so quick to follow this standardized series of steps. And if you’re an autoimmune sufferer, you probably know that enough complaining to your rhuemetologist will result in a prescription for some sort of steroid. I’ve been there. I’ve needed them. They have made me feel so much better so quickly. Their immediate result is profound and positive for most sufferers. Long term, not so much. They can contribute to diabetes and other chronic conditions that require more pharmaceuticals.

We do jump at the pharmacy route. We accept that putting a pill in our stomach a few times a day will get us where we’d like to be. Why then is it so hard to believe that the food we put in our mouths 6,7 times a day or more, will affect our health as well. I trust my rhuemetologist and pulmonologist, but they’re education and experience deals in all things above. That’s why it’s not surprising that they don’t suggest, recommend or even truly believe adjusting my diet could have a positive effect on my health. I can’t control the opinions of my doctors, what published studies in medical journals say, what the pharmaceutical reps are pushing. I can control what I choose to put in my body.

I have learned after years of feeling out of control of my health, having had doctors say things like, “eventually” and “there’s not a lot you can do”, that I do myself a great service mentally and physically to control the things I can. I don’t need a medical journal to tell me it’s a good idea, because I have discovered for myself that it is. By adjusting my diet, I have made dramatic differences in the amount of pain, fatigue, brain fog, digestive issues, and general discomfort I feel. Now food is medicine. I take it when I’m hungry, and I eat as much of it as I want. I just stay away from certain things that aren’t worth the pain they cause.

I began with an elimination diet – cutting certain items out of my life for 21 days. Then slowly adding them back in, in small portions and one at a time to see how my body reacted. Water retention, bloating, digestive trouble of any kind, pain, headaches, brain fog, rashes are all signs that this item is not good for your body. First I eliminated sugar, which made a dramatic difference in weight and water retention immediately. Next I cut dairy. After only a few weeks, my eczema had cleared and my seasonal allergies were so much better I wasn’t taking my prescription any longer. The allergist I saw said these events were unrelated, but it was enough of impact to encourage me to continue working on my diet. I eventually learned I had a wheat allergy (confirmed by allergy tests), after consuming wheat daily my entire life. The beauty of an elimination diet is, when you add items back into your diet slowly, it becomes very clear what your body can’t handle. You don’t need any test or any doctor or any amount of money to do it. Many people have told me something like, “I could never live without cheese!” or “I could never go a day without bread!” The truth is, living without those things becomes much easier when you feel relief from chronic pain or debilitating symptoms in their absence. No cheese stick or pretzel is worth the pain they may cause.

Below is a list of the most common allergens, and a good place to start when eliminating inflammatory foods from your diet. A general rule is to cut them out entirely for 21 days, and slowly add them back in. You can eliminate one item at a time or cut multiple items at once and simply add back only 1 at a time.

• sugar – refined/processed sweeteners of any kind, It’s a good idea to cut sweeteners all together at this time, including honey, maple syrup, sugar substitutes, etc. If you MUST have some sort of fix at some point in your elimination, try to stick to a small amount from a natural, unprocessed, whole-food source (i.e. dates, bananas, unsweetened apple sauce, etc.). After 21 days add back slowly and in small amounts natural sweeteners like raw honey.
• wheat/gluten – Remember that many processed foods contain wheat or other grains that may contain gluten, even lunch meat. The best way to ensure you’re truly eliminating it from your diet, is to prepare your own food for 21 days. At least be very diligent about reading and understanding food labels and ingredient lists.
• dairy – After much trial and error, I’ve learned that I can handle butter (I use a good grass-fed butter like Kerrygold) and very small, infrequent amounts of some hard cheeses. Butter is mostly fat and contains nearly no milk protein, and hard cheeses that are aged longer have little to no lactose. Everyone is different, so for the first 21 days, cut all dairy.
• corn & soy – These are common allergens and frequently found to “intolerances” to those suffering with autoimmune issues.
• A little Googling will lead you through a tangled web of other suggested food eliminations like eggs, or egg whites, or egg yolks, or night shades (i.e. tomatoes, eggplant, peppers, etc.). I find this very confusing and haven’t noticed any major differences with these items. You may decide you want to continue experimenting with eliminating these foods too.

Routine

This may sound patronizing or placating, as it did in my first conversation with my rhuemetologist when she suggested it, but I’ve since learned it is an important foundation in feeling better. My best days are days built upon routine. When I:

1. Go to bed at the same. time. every. day.
2. Get up at the same. time. every. day.
3. Take my supplements and prescriptions at the same. time. every. day.
4. Exercise/meditate/journal every. day.
5. Eat whole, unprocessed fruits, vegetables, and proteins every. day.

I feel so much better. This is simply putting health at the top of the priority list. All other priorities fill in the rest of the blanks and flow much better for it. Prioritizing loved ones and responsibilities over health doesn’t work well for long. I find that the more I add to my list of priorities, the fewer things I actually do well.

Do fewer things. Put your health and well being first, so that you can give your all to the other, true priorities in your life. It’s worth it.

Managing Stress

I quit my job. Quit. Not because I’m independently wealthy or won the lottery. Not because I was fed up, or hated it, or didn’t value, appreciate and enjoy the people I worked with.

Mostly because, I used to think that managing stress meant pretending it didn’t exist. In my defense, I’m pretty sure it wasn’t a conscious effort at denial. I truly had very little stress management tools in my tool box. Exercise and reading have been prescriptions I’ve carried around for a while. I sprinkled in some heavy doses of zoning out in front of the T.V., denial (see above), and some do-everything-myself-to-prove-I-depend-on-no-one. And my prize for all of this kicking the can down the road of life, exhaustion and pain. Literal, physical pain. So I walked into my boss’ (also a great mentor and dear friend) office, garbled some words about being done with the whole barely-getting-by-in-my-personal-life-so-I-could-hold-it-all-together-at-work-thing, walked out, and fell apart in a mess of tears. I’m putting it back together now, in my third year away. It’s taken a while, but I’ve learned a few things.

My job was stressful. Yes. I did have less stress when I quit working outside my home, but I found a way to carry stress with me everywhere, over most anything. My stress often sounded like the limited belief, “I don’t have enough time!” The stress, in the end, was in me rather than outside me. So I needed to add some more tools to my toolbox. Do I still “stress” at times? For sure! Now I just know a little more about how to set if free instead of lock it in a dark closet.

Here are a few key practices that bring me peace and help me get a rational perspective on my circumstances.

• Job – Really. If that’s a big stress inducer for you, find a way to get freedom from it.
• Meditation – The Daily Calm and Omvana apps have been great help in this.
• Exercise (see below)
• Journaling
• Listen to what’s calling you and find a way to chase after it. Make it happen.
• Learn to be comfortable saying no (I’m still working on this one.)
• Do less better – The One Thing by Gary Keller is a big help with this.
• Get outside. Get a little fresh air and sunshine. My husband likes to say, “You should spend at least 20 minutes outside every day, unless you’re too busy. Then spend an hour outside.” (He thinks he heard it from Joel Salatin.)

Exercise

I have a hard time recalling an instance that continuing to lay in bed or on the couch feeling sick and achy actually made me begin to feel less sick or less achy. Remembering times that exercise made me fell better is easy. It happened this morning, and yesterday, and the day before that, when I was really grumpy and exercising put me in a better mood too.

Furthermore, I have never had a doctor tell me not to exercise, even with significant lung damage due to my autoimmune disease. They’ve told me not to take supplements or vitamins. They’ve told me not to worry about what I am eating, but they’ve never told me I couldn’t excercise. I practically begged them to give me an excuse not to excercise, because I was so tired and sore that I just wanted to they down and not move for a very loooong time. Doctors have always encouraged it.

That’s the funny thing about exercise, when you’re feeling too tired to get up and get moving, exercise gives you more energy. When your joints or muscles feel too weak or sore, exercise strengthens them. Weak joints are supported by strong muscles, causing less pain and problems. When you’re too grumpy or stressed to add one more thing to your list of chores for the day, exercising releases endorphins and dopamine, bringing feelings of pleasure and blocking pain. (Read more about the hormones released during/after excercise here and here.) It also ensures a much better night’s sleep.

The point: Get up and get moving. Excercise! Even when you think you can’t do it, and especially when you don’t want to.  Make it sustainable by doing something you truly enjoy. Make it a habit by pushing yourself to do it regularly for a few months. Eventually your body, mind, and soul won’t let you quit.

Eliminate Toxins

This is not a political statement. It is just about allowing ourselves to be open to the fact that chemicals are all around us all the time, some beneficial (like water), some harmful (like lead). The more processed foods, beauty, and cleaning products we consume, the bigger the potential for chemical toxicity in our bodies. 

I once had an long conversation with a woman at a conference. We had a lot in common, both from rural areas with families dependent on farm and ranch. She worked for her local USDA office. She told me about a microscopic fungus in a grain that grows wild in the fields where she lives. It looks like all the other grass that nourishes them, but if the cattle eat it, they become very ill, with a number of problems. There’s no easy way of identifying the grass that will harm them at a glance with the naked eye. After her story, we began talking health. She couldn’t believe that I try to eat organic and avoid GMO crops like corn. She was personally offended. I just asked her to consider her story of the fungus and the cattle. How was it that this microscopic fungus could cause such debilitating problems in cows, but we couldn’t even allow ourselves to consider that chemicals we put in and spray all over the food we eat may possibly cause problems in humans? Just consider it? That’s what happens with politics and money.

So leave money and politics aside, and allow yourself to consider the fact that the more chemicals you put on and in your body, the bigger the toxic load you ask it to carry. How it processes all of those chemicals, sequesters them, fights them, and attempts to eliminate them from your system is still a big question mark in many cases, with new chemical/compounds being developed daily. If there are great alternatives out there, that create fewer questions and worry, why not use them? Remember that every time you spend a dollar you are voting. Your vote is saying I want to see more products like this on shelves and in stores.

To eliminate toxins:

• Read labels – A pretty good general rule is, if it has more than five ingredients, it’s not food.
• If your beauty and cleaning products aren’t forthcoming with their ingredients or you don’t recognize the names of the ingredients, don’t buy them. There are good options out there.
• Avoid boxed and bagged foods, aka processed foods
• Grow and cook your own food whenever possible
• Talk with your doctor about the toxicity of your prescription medications. Evaluate what medicines are truly necessary and if there are better alternatives or you can take a smaller dose. – My doctor does this with me every time I visit her. She encourages the smallest dose of the least toxic medications she believes I must continue to take. She regularly discusses her plans for when I may eliminate prescriptions as well. She is not the first specialist that treated me. I’ve learned the hard way that there are a lot of doctors out there. Keep looking until you find a good match.

Spiritual and Emotional Healing

Keep an open mind. Physical health is dependent on emotional and spiritual health. Sometimes the path to feeling good may also feel a little weird or mystic. Just be open. I’ve found great freedom in places I least expected (see I’ve been seeing a holistic doctor, masquerading as a chiropractor…). The answers aren’t the same for everyone, but they’re out there if you keep looking and don’t give up. Loving your life, your body, and the way you feel is worth trying and trying again.

Some ways I’ve found healing are:

• Seeing a chiropractor
• Researching and taking supplements, herbs, and vitamins
• Journaling – setting goals, writing affirmations, keeping track of food/excercise progress
• Prayer
• Reading
• Meditation
• Being open and honest about what I’m feeling

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We wish you the best on your path to a life and body you love a feel good in. Please share your tips or questions below. We’d love to know more about you!