‘HEAL’…My Own Experience

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I recently watched the Netflix movie ‘HEAL.’ It’s a film about the power of the mind over the body and how changing our thoughts about our own bodies and our health has a significant impact on our health. It also examines the need to make positive, sustained and healthy lifestyle changes like reducing stress, eating a healthy diet and staying positive in the face of a health crisis. Watching this movie was timely for me as I am also getting physical therapy right now for a long term chronic pain issue with my rib cage, an issue that no doctor could explain. During a recent therapy session my PT and I were talking health and doctors and the struggle patients have with not being heard. He also mentioned something that I could not stop thinking about when I watched ‘HEAL.’ He said that he wished doctors understood the power of their words, that patients too often and understandably, hang on what doctors tell them. So, if a doctor gives someone a diagnosis, then a patient starts defining themselves by that diagnosis and this is often when negativity and depression set in. Patients often then resign themselves to a life of discomfort and prescription management of their symptoms. Doctors do not generally teach patients to examine the power of their own attitudes or the importance of the mind-body connection.

The movie ‘HEAL’ was very much about this topic and it talked about accepting a diagnosis but not accepting the prognosis. I think this is exactly what my physical therapist meant when he said he wished that doctors understood the power of their words. In my own experience living with a chronic illness, I look back and remember how naive I was when I was first diagnosed. How important the person in that stupid white coat was to me. I was a novice and and I was scared. I had never heard of sarcoidosis before and at the time of my diagnosis, I was near needing supplemental oxygen. I was too young for that! My diagnosis was tricky as well. I had had several biopsies and they all came back as inconclusive. Finally, my pulmonologist decided that I should have an open lung surgery to remove tissue and determine the cause of my symptoms. At the time, I really didn’t know any better so I agreed. Now, I would ask for repeat less invasive biopsies. Just because they are inconclusive once doesn’t mean they will be again. I didn’t know that at the time.

I had my lung surgery on the right side. Seven years post surgery and I started having horrible right sided rib pain and to me it felt like my rib cage had caved in. The right side of my torso burned, was hypersensitive to touch, ached and I had constant stabbing pains. Looking back, I had had these pains after my surgery and they slowly, over time, got worse and worse. I have a ridiculously high pain threshold so I didn’t pay it much attention until this past year when it really started to limit my life. It was time to have it looked at. I started with my pulmonologist. It seemed the right place to start especially since I also noticed that this pain was making it harder for me to breath and she was the one who had ordered the lung surgery in the first place. She looked my ribs for half a second and told me…”Well, you’ve lost a lot of weight because of your sarcoidosis, so I think that’s all it is.” Really? Come on!

Now, I’m seven years into my diagnosis. I am no longer a novice. Her response, blowing off my pain, was unacceptable. In the past I would have taken it and just lived in pain. I wanted an answer, an understanding of the cause of my pain so I could figure how to go about treating it. I then went to my primary doctor who sent me down what I call a rabbit hole. That’s what doctors do when they don’t listen to you. I knew my pain was related to my ribs…I know my body. He sent me to have an ultrasound of all of my abdominal organs. It showed that my gall bladder was inflamed. Sarcoidosis is an inflammatory disease so the minute I hear that I have inflammation in an organ, I know it simply means my disease is at play. Unfortunately, sarcoidosis is a widely misunderstood disease and when I suggested that the inflammation might be from my inflammatory disease, he said he’d never heard of sarcoidosis being in the gall bladder. Sarcoidosis can show up in any organ. Ever heard of “Occam’s razor?” If you haven’t, it means that the simplest answer is often the right one or the simplest solution is often the right one.

My primary doctor decided that since my gall bladder was inflamed, I should have it further examined. He sent me for a very expensive and time consuming (2 and half hour) scan called a HIDA. It tests the function of the gall bladder, the ejection fraction, if you will…to see how well my gall bladder was emptying the junk it is supposed to filter through my body. Anyway, that test showed that my gall bladder injection fraction was 39%. This is low and shows that my gall bladder isn’t working at its max capacity. The magic percentage for removal is 35%. When I had my follow up appointment to discuss the test results, my doctor had no idea what to do with me. He told me I could see a surgeon about having it removed if I wanted to or not. He left it entirely up to me. Good thing I’m no longer a novice at this! I decided to go see the surgeon, not necessarily to have the gall bladder removed but, to get another, hopefully more educated opinion about it.

In the meantime, I could not stop thinking that all my primary doctor did was reveal a new problem and my rib pain was still not getting addressed. He not only left it up to me to decide if I wanted to see a surgeon about my gall bladder, when I pushed him about my rib pain, he said, “Well, you’ll just have to let me know if it’s sill a problem in the future.” His only answer to addressing it was to throw prescription medication at it, which I refused. I did not want my pain masked, I wanted an answer for the reason I was having the pain. The old me would have taken the medication, let it get me fat and feel miserable. Not anymore! What I understand now, in a fundamental way, that I did not understand seven years ago, is that doctors are there to provide advice based on their best medical education but I decide what treatment is appropriate for me. I will no longer simply settle on what a doctor says or suggests. I ask questions. I fully educate myself.

I went to see the surgeon. I didn’t need to have my gall bladder removed. I’m not having any symptoms that warrant it. She examined my ribs. She didn’t have to but she was really the first doctor to take a good look at them. I appreciated that. She sent me to a pain management doctor. I believe every speciality has its place. There are times pain needs to be managed by someone who really focuses on that and there are times pain cannot be explained but, I kept telling all of them that it WAS my rib cage…that I knew it was my rib cage and that I thought it had something to do with a long term complication of the open lung surgery that I had…Occam’s razor, right?

Chasing pain relief was never what I wanted. I wanted to know what was causing the pain. I knew something was wrong with my rib cage. I just knew it! After an alarming couple of meetings with the pain management doctor in which he went from deciding I have nerve damage and needed injections for that to having disc problems that didn’t show up on my MRI based simply on something I said, he went from wanting to give me nerve block shots in the intercostal nerves to wanting to give me steroid injections in my back…all without ever giving me a physical examination. I was already weary about seeing a pain management doctor. I had already expressed my concerns about invasive treatment, RX medication and the like. My gut kept telling me that there had to be an answer that might not require long term medical intervention through drugs. I finally got him to LOOK at my ribs. He noticed that the muscles were significantly atrophied. I asked if physical therapy might help. He said he didn’t think so but I could try it.

I’ve been in physical therapy now several weeks. The moment I was evaluated by the physical therapist, he knew exactly what was wrong with my ribs and how to address the pain. I have massive scar tissue build up all around the area where I had my open lung surgery. This scar tissue has adhered to the tissues, muscles and nerves in my torso making them function poorly and my torso has grown very week, also making breathing even more difficult. Over the past seven years I’ve slowly taught my body how to compensate for this and, meanwhile the problem has gotten worse. I stopped using those muscles properly because the scar tissue has compressed them. Physical therapy is helping me in a way no medication or injection ever could and, slowly, I am getting my life back. We are addressing the root cause of my pain by breaking up that scar tissue and rebuilding my muscles. We are solving a seven year mystery and all in a way that does not require prescription intervention and will be good for my body long term. The moment I left my physical therapy evaluation, I felt, hope. I am sure that feeling is also having a powerful impact on my progress because I am progressing faster than the therapists thought I would. I joke with them that I am an overachiever…which is true but, the power of hope that they gave me and the way it has impacted how I feel about my body has been the best medicine I could ever have received.

I’m glad I will no longer settle for what a doctor tells me. I’m glad that I’ve learned the importance of taking charge of my own medical care, that I’ve come to understand that on a very deep level, doctors should be our partners in health, not our dictators. While the movie ‘HEAL’ talked about accepting a diagnosis but not the prognosis, I sometimes think we shouldn’t accept the diagnosis either, not until we are fully informed and find doctors who treat us with the respect we deserve as patients. As patients, I also believe in the importance of self education and self advocacy. When you’re in desperate need due to pain, it can be hard to hang on to the idea that “White Coats” don’t have all the answers but in reality, they don’t. They need to listen to us too and when they don’t, we have every right to push back because finding the least invasive ways to address a medical issue are often the most healing and it’s too easy for doctors to throw prescriptions at us, label us as diseased (sometimes incorrectly) and move on to the next patient.

When we are educated about our bodies, our own health situation, when we listen to our own instincts, we are far more likely to have a positive outcome. When we take control, when we seek more than medicine but also look for hope in our healing, when we focus on gratitude and grace and the power of our own inner strength in addition to whatever medical intervention we might pursue, the chances are that we will feel better sooner and will be more in control of our own good health and destiny. Understanding all of my treatment options and having a fuller understanding of the risks and rewards of those options has become the roadmap that I now use to manage my health. I listen to the inner voice inside me that knows me and my body better than any “White Coat.” My disease no longer defines me but instead, is simply a part of me and while I don’t know what the future holds, one day at a time, I will continue to work on taking back my life and living was well as I can, knowing that ultimately, I control my own fate and there is great power in keeping my mind and body connected to one another.

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White Bean Kale Salad With Sweet Tahini Dressing

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Once and awhile I like to post a healthy recipe…I like to do this because eating a healthy diet is a HUGE help to me in my fight against living with sarcoidosis. Here’s a wonderful kale salad recipe that I made the other night for the first time. It’s a keeper.

What You Need:

BEANS
  • 1 15-ounce can white or butter beans, rinsed and drained – I like cannellini beans
  • 1/2 lemon, juiced (1 Tbsp)
  • 1 Tbsp olive oil
  • 1/4 tsp sea salt
  • 1 Tbs fresh parsley, chopped, plus more for topping
SALAD
  • 10 ounces kale, chopped, large stems removed – the smaller you chop it the easier it is to chew
  • 1 lemon, juiced (2 Tbsp)
  • 1 Tbsp (15 ml) olive oil
  • 1 Tbsp (15 ml) maple syrup
  • Pinch each sea salt + black pepper
  • 1 clove garlic, minced
  • 1/2 cup or so of walnuts
  • 1/2 or so of golden raisins (regular are fine too)
  • 5 oz of grape tomatoes halved – optional
DRESSING
  • 1/3 cup tahini
  • 1 clove garlic, minced
  • 1 1/2 lemons, juiced (3-4 Tbsp)
  • 1-2 Tbsp maple syrup
  • Pinch each sea salt + black pepper
  • Hot water to thin – amt depends on how thick you want the dressing to be

How To Prepare: 

  1. Add drained beans to a small mixing bowl and add lemon juice, olive oil, sea salt, and fresh parsley. Toss to combine. Set aside.
  2. Add kale to a large mixing bowl with lemon juice, olive oil, maple syrup, salt, pepper and minced garlic. Use your hands to massage the kale and break down its texture a bit, and to season the salad.
  3. To prepare dressing, add tahini, garlic, lemon juice, maple syrup, sea salt and pepper to a small mixing bowl. Whisk to combine, then add hot water to thin until pourable. Taste and adjust seasonings as needed. Set aside.
  4. Lastly, add beans, walnuts, raisin and tomato and 3/4 of the dressing to the kale and toss to combine.

NOTE: Adding a diced red onion to this recipe would probably also be quite tasty!

Choices and Excuses

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“I don’t have time.” This was one of my all time favorite excuses for not making exercise a priority in my life. I think the real reason I stopped exercising was that I had no energy. If I had exercised even half the time I spent in bed, then maybe I wouldn’t have gotten into such trouble with my sarcoidosis in the first place but I had forgotten what normal was and didn’t even know I was sick for quite some time.

I was stuck in a very difficult rut. I worked long hard stressful hours and I ate the wrong foods…high sugar and high carb foods to keep me semi alert. It was like being on drugs. I’d get my quick fix of energy, it would wane and I’d need more. I drank more soda products at that time than I care to admit! It was a vicious cycle and I had no idea how to change it. For awhile, I had no idea that it was even a problem. The levels of fatigue I began to feel, crept up on me over time and eventually it became normal for me to crawl back into bed on a beautiful Saturday morning and sleep the day away rather than go out for a bike ride or a walk with my dogs.

This was certainly not normal behavior and not normal behavior for me but it became normal and I got to the point where I forgot what it felt like to be active. All of this was happening well before my sarcoidosis diagnosis and all of it was a symptom that something was seriously wrong but it was all very subtle and to me, easily explained by my crazy job and its insane demands and my desire for perfection. Looking back, it was the beginning of my disease. This was actually the time when sarcoidosis was winning the war but I was yet to be diagnosed with having any kind of medical illness so I was at a huge disadvantage.

When it finally came, my sarcoidosis diagnosis was a wake up call though. It answered a lot of questions that I never even knew I had. Being that fatigued was not actually normal. Wanting to lay down all the time was not what regular people do. I was not managing my stress well at all and now I was sick too. Something had to change. So, I gathered up all my excuses: too tired, too busy, no time, etc…and put them in the garbage, slamming down the lid forever. I didn’t want to feel the way I was feeling anymore. I came to accept that the sluggish cement like feeling in my bones was partly my disease and partly my excuses. I couldn’t do anything about my disease but I did have a choice about the excuses I was making for not to take better care of myself.

It was a slow process to get back into a regular exercise routine. I was having trouble breathing which didn’t help, thank you sarcoidosis. My doctor prescribed inhalers and now I use them 30 minutes before exercising. I didn’t start by running any marathons, I tell you! Getting moving again in the beginning was a simple act. I started gradually by setting aside some dedicated time every morning to walk the dog. Over the course of just the first week, I remember noticing a difference. I had a little more energy during the day and was able to back off the soda and high carb foods. As I gained more strength, I added in more time for movement. I started riding my bike and doing the elliptical machine and as I did this, I continued to remove all those nasty refined carbs from my life too.

The simple act of exercise was starting to give me the boost of energy that soda never could because the energy I got from exercise was lasting. I felt good all day or at least better any way. Exercise also reduced my stress and my breathing slightly improved as my lung capacity got a little stronger. So, I learned over time that the excuses or the choices I make have a powerful impact on my disease.

I Am What I Eat…

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Living with a disease like sarcoidosis creates certain challenges. Much is out of my control. Yet what I choose to put in my body isn’t and what I choose to put in my body makes a difference in my health, chronic condition or not. Ever since my sarcoidosis diagnosis, I have become passionate about improving my health any way I can and one way is through the food that I eat. This is why I have a dedicated a page at the top of my blog to healthy recipes.

I happen to be a vegan. I was a already a vegetarian when I got sick so becoming a vegan was not a huge leap for me. It’s not a diet everyone can handle and I don’t necessarily advocate it for everyone. What I do advocate, is that folks explore better health through what they do eat. After all, can’t we all do a better job making healthier choices?

Cutting out all dairy for me, has helped ease my breathing and lessen my chest tightness. It has also had a positive effect on my skin and it has lessened my fatigue and reduced my body aches and pains. Diet is not a cure for sarcoidosis, it is simply one tool in my control to help me manage the symptoms of my disease and I am so glad that I’ve taken charge of it because I have learned that I truly am what I eat!

Here’s a healthy yam and kale salad recipe that also happens to be quite delicious!

Ingredients:

  1. 2 small/medium size yams – skinned and cut into pieces
  2. 1 medium sweet yellow onion – diced
  3. 2 bunches of kale – stemmed and torn into bit size pieces
  4. 3 Tablespoons olive oil
  5. 1/2 (or more) walnuts
  6. 1/2 (or more) raisins (dried cranberries are a nice substitute)
  7. 2 Tablespoons red vinegar
  8. 3 (at least) cloves of minced garlic

Directions:

  1. Preheat oven to 400 degrees and while the oven heats, skin and cut up the potatoes. Put them in a bowl and cover them with olive oil. Once the oven is heated, bake them for about 20 to 25 minutes – take them out and let them cool when done.
  2. Put the diced onions in a large skillet with olive oil and cook for about 10 to 15 minutes – until onions begin to caramelize, adding the garlic about half way through.
  3. Stir in kale and continue cooking until kale wilts but is still a nice bright green – add a touch more olive oil if the pan gets too dry.
  4. Remove the skillet from the stove top and let cool.
  5. Once the potatoes and the onion and kale mixtures have cooled – mix them together in a large bowl, add in the raisins and walnuts and then toss with the red vinegar.

Fairly Healthy Vegan Chocolate Frosted Donuts

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I know, it sounds crazy to ever call a donut healthy but there aren’t too terrible for you…if eat them in moderation! They have no dairy in them and they are baked. Chickpeas are used so that less flour can be used as well. I was a skeptic but I made them the other day and they were really tasty.

INGREDIENTS

Donuts:

1 cup garbanzo beans, rinsed and drained
1/2 cup unsweetened almond milk – although I used unsweetened vanilla and it perfectly okay.
3/4 teaspoon baking powder
1/4 teaspoon baking soda
2 tablespoons vanilla extract
1 teaspoon apple cider vinegar
1/2 teaspoon salt
1/2 cup sugar
3/4 cup vegan chocolate chips – whatever brand you like
1 cup white whole-wheat flour

Frosting:
1/2 cup vegan chocolate chips – or more if you like…I think I used a whole cup
1 tablespoon unsweetened almond milk – although I used unsweetened vanilla and it was just fine
1/2 tablespoon vanilla
1/4 cup powdered sugar – organic if you prefer

DIRECTIONS

  1. Preheat oven to 350ºF.
  2. Place the garbanzo beans, almond milk, baking powder, baking soda, vanilla, apple cider vinegar, salt, and sugar in a blender (I used my NutriBullet). Blend until smooth.
  3. Melt the chocolate chips in the microwave in a large glass mixing bowl. Pour in the pureed mixture and flour, and stir until a thick batter forms.
  4. Spray two doughnut pans with cooking spray.
  5. Using a small spoon, carefully fill each doughnut well, smoothing out the batter with the back of the spoon.
  6. Bake for 8-10 minutes.
  7. Allow to cool in the pan for 5 minutes before moving to a cooling rack.
  8. While they’re cooling, make the frosting. Melt 1/2 cup of chocolate chips in a small bowl. Stir in the almond milk, vanilla, and powdered sugar.
  9. Spread onto each doughnut, decorate as you like, and enjoy immediately!
  10. Store uneaten doughnuts in an airtight container and enjoy within a day or two.

Chickpea Cabbage Tomato Soup

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I like this soup. It’s easy to make and because it has cabbage, it’s filling. I usually make it with a green side salad and call it dinner. Quick and easy w/ minimal clean up!
Ingredients
  • ½ cup vegetable broth for sautéing plus 2-4 cups for soup
  • 1 small head of cabbage or ½ head large cabbage, chopped into bite-size pieces
  • 1 onion, chopped
  • 4 garlic cloves, chopped
  • 1 tablespoon of dried basil
  • ½ teaspoon of salt
  • ½ teaspoon of ground black pepper
  • 2 15 ounce cartons of cooked chickpeas, rinsed
  • 3 cups of diced tomatoes, fresh or canned – I used canned…it’s easier when you’re in a hurry!
  • Fresh chopped basil for garnish (optional) – although I highly recommend it!

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Instructions
  1. In a large soup pot, heat the ½ cup of vegetable broth. Add the dried basil, salt and pepper. Add the chopped onion and saute until soft and translucent about 3-4 minutes. Add the garlic and saute for another 2 minutes. Add the diced tomatoes, cabbage and cooked chickpeas. Cover with vegetable broth. Bring to a boil and cook for approximately 30 minutes or until the cabbage is cooked. Add more vegetable broth if needed. Taste for seasoning. Add more salt, pepper or dried basil if needed.
  2. Serve hot garnished with fresh basil or parsley.

 

Vegan Banana Bread

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Ingredients:

  • 4 over ripe bananas
  • 1 1/2 cup all purpose flour – I used whole wheat flour – it was all I had handy…still worked just made the bread a little denser
  • 1 1/2 teaspoon baking powder
  • 1/2 teaspoon baking soda
  • 1/2 teaspoon cinnamon – I use a little more…I love this spice
  • 1/2 teaspoon vanilla – optional
  • a pinch of nutmeg – or maybe a little more
  • a pinch of salt – really just a pinch of this stuff…no more is needed
  • 1/4 cut coconut oil – melted
  • 1/3 cup brown sugar – packed – I used dark brown – I like it better
  • 2 tablespoons crushed walnuts – optional  – I didn’t have any handy the first time I made this so I used chocolate chips…dark chocolate vegan chips…YUMMY!

How To Prepare:

  • Preheat oven to 350 F
  • In one bowl sift together the flour, baking powder, baking soda, cinnamon (if using), nutmeg and salt then it set aside
  • In another bowl, mash up peeled and over ripe bananas until they are completely smashed and goopy…don’t leave any large lumps
  • Then add in sugar, melted coconut oil and vanilla (if using) until well blended
  • Next fold in the flour mixture to the wet mixture and stir until well blended
  • Add in walnuts or chocolate chips  – if using either
  • Put mixture in a greased bread pan and bake for 25-30 minutes – until a toothpick or fork comes out of the bread cleanly – don’t over bake (don’t you love it when people tell you this…duh!)

ENJOY with a nice glass of dark chocolate almond milk!