When I read this article…I thought it perfectly and entirely summed up what others need to know about me because of my chronic sarcoidosis. All eight items describe me and it’s as if the writer reached into my head and stole my private thoughts. Number six is especially true for me. I hate to ask for help but more than that, I hate the thought that others might believe I am weak, so I soldier on and sometimes it gets very very very lonely.
Today is my 47th birthday. I’d really rather not spend it sitting here writing a blog about my life with sarcoidosis. I want to celebrate life today and that’s what I am going to do but, before I do that in honor of my birthday and sarcoidosis awareness month, I will share forty seven things I have learned since being diagnosed with sarcoidosis: (In no particular order)
- Live every day like it’s your last
2. Doctors don’t know everything!
3. When you’re blue…write a gratitude list…it always helps change your perspective.
4. Stop doing things you don’t like doing.
5. Eating a clean diet does make you feel better.
6. Regular exercise actually helps fight fatigue.
7. Having a dog is great company on long lonely sick days.
8. The internet can be a magic place for human connection with others in the same boat.
9. Being vegan is awesome!
10. Ultimately we are all alone in the end.
11. Taking time to rest is important.
12. Pushing yourself is a must.
13. Don’t ever give up even when it’s bleak.
14. It always gets better.
15. Being in nature is better than medicine.
16. Taking up hobbies helps fill the time and is good for the brain.
17. You don’t need to explain yourself to other people.
18. Looking your best will help you feel better.
19. It’s okay to get mad but it’s not okay to stay angry.
20. The loss you feel from living with a chronic disease is real.
21. Happiness is a choice.
22. Don’t use your disease as excuse.
23. You can break your sugar addition.
24. Remove stress from your life.
25. Set boundaries that are good for you.
26. Always have goals.
27. If you are having trouble reaching your goals, change your approach.
28. Cry sometimes. It’s good for you.
29. Laugh every day.
30. Have a sense of humor about yourself.
31. Don’t expect other people to understand what your disease puts you through.
32. Life is short.
33. Don’t let sarcoidosis define you. You are more than your disease.
34. If you’re always right…you won’t be happy.
35. It’s okay that you world got smaller.
36. Tell the ones you love how you feel about them.
37. Be nice…you never know what another person is going through.
38. Life is beautiful.
39. Cooking healthy food can be fun.
40. Don’t give up on a cure!
41. Keep your doctor appointments even when you don’t want to go.
42. Other people will give you advice you didn’t ask for and don’t need.
43. In every difficult situation, look for the lesson.
44. Be present.
45. Have fun with your brain fog.
46. Don’t live in the past.
47. Life is what you make it.
During this month of “Sarcoidosis Awareness”, we are hearing a lot about the disease, what it is and how hard it is to live with. I think bringing awareness to these things and the fact that there is no known cause or cure is important but for those of us who live with this disease, bringing awareness to what it is and how it impacts our world is not something we do once a year for a month. It’s how we live our lives. We spend a lot of time explaining ourselves. Why we are so tried. Why we cough so much. Why we wear an oxygen mask. Why we missed work yesterday. Why we have trouble walking. Why we feel lousy but look good.
People frequently tell us, with confusion and sometimes with accusation, that we don’t look sick. For some reason, our physical appearance becomes a smoke screen for what is really going on, which is fascinating because it means people expect us to walk around looking ill, in dirty sweatpants and no make up, like we don’t actually have a right to look our best. It lulls those without the disease into a false sense of security that we are doing better than we actually are and if we are honest about it, truly, we often play along. It’s just easier to sweep reality under the rug sometimes. But, how we look is not necessarily a measure for how we feel which is why we then end up explaining ourselves and our disease, over and over again like a broken needle on an old fashion record player.
It’s easy to be dismissive of sarcoidosis. Not enough is known about it and there is no true pattern to how it will play out for any given patient. It’s rare and most people have never heard of it. And, it’s generally invisible. We don’t look sick…most of the time. In fact, most of us have learned to mask our pain so well, we can sometimes even fool ourselves into moments of normalcy. Sadly, there is nothing normal about sarcoidosis. There is nothing normal about the contrast in how we feel and how we look and there is nothing normal about having to make a daily assessment about our goals based on our pain and energy levels. There is nothing normal about the losses we have to accept.
We may look like our old selves, but we have changed. We are vulnerable because we have learned that life is fragile. We have come to understand that nothing is to be taken for granted. Our health could turn at any moment, forcing us to say goodbye to the life we are currently living. We understand grief in new and profound ways because may of us have lost careers, friends, homes and more. We’ve become watchers as those around us steam ahead, doing so with no recognition for our inability to keep up. In subtle ways, all around us, we know we’ve been left in the back of the pack. We might finish the race, but we aren’t going to win.
So, come April 30th, you might see less purple splashed on the internet, you might notice that your friends who have sarcoidosis, aren’t posting about it every day and you might see fewer “likes” for posts about the disease. For those of us who have sarcoidosis making people who don’t have it and never heard of it, more aware of it, is a life long event. It will remain something we strive to do until better quality treatment is offered, until the cause and cure are known….until we stop dying.
There are times we don’t talk about my sarcoidosis for weeks at a time. It’s almost as if my disease has just become part of the fabric of our lives. There is little need to discuss it. It is, after all, a known quantity in our lives. I am sick. What else is there to say? Why should we dwell. When all is said and done, we don’t need words to know the impact sarcoidosis has had on me and on us, the loss of income, the slower pace of life, the ease with which I now cry and feel helpless and ineffectual because my lungs burn in a fiery blaze, a blistering ache every time I take a breath and my body writhes in unexpected and mysterious discomfort for reasons no doctor seems to understand and, always at the most inconvenient of times.
Tonight for the first time in quite awhile, we did talk about it. I talked about it. I admitted a rarely spoken ugly fact about living with a chronic disease. I said that it’s hard. I said that I hate it. I don’t like to say these things. I feel like when I do, I give the disease power over me, power I loath to feed that horrible ogre who took up unwelcome residence inside my flesh and organs, my bones and limbs. I do hate it though and that’s the simple truth of the matter.
There are things about becoming persistently unwell that actually make you appreciate life in deeper and more profound ways. Time changes because you realize how much of it you wasted when you were well and worried about stupid, mundane, often petty things, stuff beyond your control, outside of your grasp, the injustice of things not going your way. What I know now because of my sarcoidosis, is that most things don’t turn out as planned and that this is meant to part of the adventure of life, not something to fret over. The unplanned events in life are what build our character because they are what shape us through the choices we make about how we face them.
I am grateful for the knowledge about life that I have gained from being knocked out of the rat race, the constant chase for the next best thing. I no longer have the drive or the need to be the best at everything I do or in the know about every stupid latest fad or fashion. Instead, I find my life of forced simplicity to be an unexpected blessing. There is ease in it. It does give me pause to be still and know that life is not only fleeting, it is profoundly short and when every breath you take is literally painful, well, this just gives you a better understanding of life and death, how the two are intertwined and cannot be unwoven from each other. There is a humanity and a humility that comes with the knowledge that death is forever chasing life. This is a little secret that can only be understood once your very being has been threatened by the mayhem of disease.
Most of the time, in my acute awareness that life is a fragile momentary passage of time on this insanely beautiful planet and, despite the unyielding stumbling blocks of life inside an uncooperative skin, I choose to be grateful. I choose to focus on contentment rather than disappointment. I seek serenity instead of worry. I long for peace instead of disturbance. However, I would be remiss and even a liar, if I didn’t once and awhile admit, despite my abhorrence to the fact that I loath to acknowledge it, having this disease is hard and I do hate it.
So tonight, I let the floodgates open but, only a crack. I released the burden of the all too often unvoiced reality about life with a chronic health condition. I admitted that I feel weary sometimes. I disclosed my loneliness and insecurities. I shed light on the ugly sorrow of a body burdened by disease but I only did this so that these demons cannot swallow me whole. Sometimes the only time the truth can hurt you is when you’re not honest. Feelings are only as powerful as you allow them to be. I do grieve and this disease does make me sad but when I am honest, when I acknowledge my broken heart and liberate myself from being mostly stoic and strong and outwardly fearless in the face of constant uncertain health, I am better able to appreciate the simple joy that is life and I am free to continue living with grace and acceptance of what is rather than what will never be.
I was chatting with a friend today, who is not only an animal lover, she also has a serious chronic health condition. She was asking me how I am doing with my grief over losing Zoey. For those who don’t know, Zoey was my fourteen year old Old English Sheepdog. She wasn’t sick when she died even though she was old. According the vet, she had a sudden and unexpected “neurological event.” I have been in shock and sorrow since it happened. If truth be told, I am reeling in grief. My friends have been very supportive since this happened and this particular friend said something that has stuck with me all day. She talked about how our pets, our fur children, as I like to call them, remain loyal to us despite our illness. People often fall away after illness hits us. Their lives move on because the illness didn’t happen them and we struggle to keep up. Our fur kids, they slow down with us. They are more than happy to be by our side, in sickness and in health. They watch over us. They protect us and this only strengthens our bond with them.
Anyone who has a fur kid, loves their animal, of this I am sure, but there is something to be said for the loyalty they do show those of us with chronic illness. There have been times I have been too weak, too fatigued to leave my house because of my sarcoidosis. At those times, I have always been able to count on my fur kids for unquestioning companionship. Zoey knew me in good health and in bad. I think once I got sick, she sensed something about me had changed because the depth of her connection to me, the way she would velcro herself to me became more magnified. She watched over me all the time.
After I got sick, Zoey became my dog. She made herself my dog, a self appointed guardian. She still loved her human daddy but she seemed to make a conscious decision to favor me. We certainly had the opportunity to spend more time together after I stopped working but, the change in her toward me was notable, much more protective. My presence in her life became more important to her too. Her drive to fortify me, to keep me safe, gave her a greater purpose. Her constant attention alleviated the loneliness that only those with chronic illness understand. This was when I think she and I become permanently woven into the core of each other.
Zoey was what another friend of mine called my “heart dog.” I think this describes our bond entirely. She had my heart wrapped up in hers as I did hers in mine. As she aged and needed me more, I was there for her. She had become my security blanket when I needed it because she understood more than any human seemed to know, the depth of my fear from getting sick. I was her protector when age began to steal her confidence. I made a promise to her when she turned twelve that when the day came she no longer had good quality of life, I would do the right thing for her. I had no idea that I would be blessed with two more full, happy and memorable years with her. Nor did I know I would be fortunate enough to have that moment made clear to me. Despite the pain that I feel in losing my security, my “heart dog”, I was able to keep my promise to her. She had fulfilled her purpose, as all dogs long to do. She made my world a better place and she made sure I was going to be okay.
I take a lot of medication for my sarcoidosis. I go to the doctor when I am supposed to. I eat a healthy diet. I exercise and I do all that I can to take care of my physical body since, getting this lousy disease. It was Zoey though, who helped to heal me. I am not in remission from my disease but I know it was Zoey who made me better than I would have been had she not been there during the darkest moments of my disease. She gave me purpose, priceless joy, unequivocal love and a reason to face even my most difficult days. I know now that no matter what happens to me, no matter what this disease does to me, I will always have her spirit to draw strength from. It won’t be the same as having her physically at my feet but she gave me what I needed to cope. She made me a stronger person because she taught me to look for happiness in simple everyday experiences. Zoey and I were side by side in all things. This is what I am most grateful for and also what I mourn the most in her passing. We have an irrevocable bond and I know she is with me always. She will forever be my guardian angel and I can face whatever challenges are ahead of me because I had a love like no other. I had Zoey.
Acceptance, Attitudes, Awakenings, Awareness, Balance, Change, Choices, Chronic Disease, Courage, Grace, Gratitude, Growth, Happiness, Health, Healthy Choices, Healthy Living, hope, Inspiration, life, Peace, Sarcoidosis, Strength, Truth, Uncertainty, Understanding
When you live in a body that is broken by chronic disease, there are obviously physical challenges but the hardest part of me, living in a body that won’t cooperate, is not the physical discomfort, it’s the emotional strain of knowing I am not the same as I was before sarcoidosis decided to invade my body.
I don’t waste my time asking “why me?”. I’ve lived life long enough to know that “stuff” just happens to all of us at different times and in different ways. Part of living is learning how to cope, so “why me” becomes a wasted question. It’s not worth the time to lament over. That being said, I do grieve who I used to be. I grieve the ease by which I once ran around on the tennis court. I grieve a lost career because I no longer have the stamina or brain power for that kind of success. I grieve a body that does not hurt all the time. I grieve lost friends who have faded away because they didn’t want to get to know the new broken me and I can’t keep up with them.
Life is no longer what it used to be and while living with a chronic health condition, impacts the body, it also taps into the soul and tears at the psyche. Managing the physical strain of sarcoidosis has become the easy part. I try to get enough rest, avoid stress, see my doctors, take my medications, eat a strict healthy diet and get my exercise. It is the emotional stress of this disease that is trickier, harder to pin down and often more elusive. As I have learned what to do to stay physically healthy, I have also learned what to do to stay emotionally healthy and the two actually go hand in hand. If I am not taking care of my body, my mind gets weak. If I am not taking care of my mind, my body gets weak. Taking care of my mental state involves a conscious daily effort to focus on what is good instead of what is bad, on what I have instead of what I have lost.
Emotional management of my disease, requires that I am honest about how I feel even if that honesty is hard to accept. I have to allow for balance between grief and loss and moving on. I’ve had to make room for a new and very different life than I ever expected. I have had to learn to be more comfortable being vulnerable and I have had to learn to accept help from other people. I have had to learn that pride is no always my friend. Sometimes people fail me and I’ve had to learn to understand that it’s because they just cannot understand my experience. I didn’t before I got sick. So, I also practice a lot of forgiveness to keep my emotional state as healthy as I can.
While caring for myself physically with this disease is pretty straight forward, caring for myself emotionally isn’t linear. While it’s okay to feel upset about having this disease, it is not okay to stay stuck in anger. While it is okay to be sad about having this disease, it is not okay to wallow in sorrow. While it is okay to grieve the losses, it is not okay to live in the past. Finding emotional health when you live with a disease like sarcoidosis, is all about finding equilibrium and learning that there are limits in hanging on to emotional pain and that there is freedom in letting it go.
Today, I spend a lot of time focused on grace, gratitude and my overall attitude toward whatever faces me. I can walk in faith, believing I am up for the challenge or, I can shrivel and wither in its wake full of bitterness and anger over the contest ahead of me. I know this is a battle I cannot fight alone or in the dark. So, today I have learned to ask for help when I need it and to say no when I cannot do something. I am learning to slow down and stop if I have to without guilt because I did not ask for this disease and I cannot always control it. My emotional health depends on my ability to accept that my life has changed and to do so without shame for my limits.
There are things in the life worth fighting for and sarcoidosis has taught me that finding happiness and serenity are among them. No matter what befalls me, no matter the size of the mountain the rises ahead of me, I can take the journey one step at a time, afraid but still functioning, in sorrow but with hope that each step will lead to a better place of peace and light. I know with my whole heart and my entire being that my life is made or broken by the choices that I make and while having sarcoidosis is difficult, even life altering, how I respond to the challenges it presents will make all the difference in the new life that am asked to create because of it.
- No matter what happens to us, we control how we respond to it.
- Don’t take any drugs a doctor prescribes before knowing the full extend of their side effects.
- Life is too short not to laugh every day.
- Go to bed with gratitude in your heart for what was good about your day.
- Wake up each morning thinking about who and what you love most.
- Eat a lot of fruits and veggies.
- Put down the donut.
- Get some exercise.
- Don’t make excuses about anything.
- Rest when you need to but don’t be lazy because life is too short for laziness.
- Admit mistakes and apologize when you are wrong.
- Another person’s bad attitude doesn’t have to be our problem.
- Avoid drama.
- Watch sunsets.
- Sit by the sea whenever you can.
- All politicians lie.
- We don’t have to agree to get along.
- Diversity of thought is a good thing.
- We cannot win if we don’t ever play the game.
- Mistakes are as important as success if we are willing to learn from them.
- Not all battles are worth the fight.
- Take care of your body as it is the only place you have to live.
- Get a dog so you can truly experience unconditional love.
- Be a good advocate for your needs because others cannot read your mind.
- Don’t look behind you…you’re not going that way.
- It’s okay to change direction.
- We can’t always get what we want.
- Sometimes the thing we want most isn’t good for us.
- Live your life your way and let others do the same.
- Judging others will come back to bite you.
- Ignorance is not always bliss but sometimes it is.
- There is life left to live after grief and loss.
- No one person can meet all of your needs.
- Do what you say and say what you mean.
- If you can’t do what you say, explain yourself without excuses.
- Actions matter…so does inaction.
- You cannot unsay something.
- There is nothing like losing something to make you appreciate it.
- Don’t take your loved ones for granted.
- Our health matters…without it everything is harder.
- Don’t believe everything you hear or read…if it sounds wrong, it probably is.
- Live an examined life.
- Be kind to strangers…you don’t know what they are going through.
- If you hear music…dance!
- An academic education is important but so is the school of life.
- If you have all of your senses…use them!
- Eat to live…not the other way around.
- Taking the high road sometimes means walking away.
- Showing weakness can actually be a sign of strength.
- Be honest with yourself…always.
I’ve heard people with sarcoidosis say that they would rather have cancer. I wouldn’t. I’ve never had cancer but I know people who have and, it’s a horrible frightening journey to watch. I know, I think, why people say they wish that they had cancer instead of sarcoidosis. In some desperate way, what I believe they are saying is that at least there are known treatments for it. There is also a general understanding about what it is. Everyone, one way or another, can relate to cancer because its reach is far and wide. Having sarcoidosis is both lonely and complicated because there is no known cause or cure. It’s rare and wildly misunderstood. It’s an invisible illness…unlike cancer. Nothing about sarcoidosis is predictable but if you think about it, cancer can be unpredictable too and once you’ve had it, even if you go in remission, it hangs over your head. In this regard, it’s really not that much different than sarcoidosis.
While it’s frustrating to have a condition for which little is understood by the general medical community, it’s a disease I have come to know a great deal about and I have found that being educated about my disease has been the key to learning to live with it. In some strange way, I find this a comfort. There is power in knowledge even when that knowledge is unpleasant. I also have come to realize that being sick, having any disease, just plain stinks and it doesn’t matter if it’s cancer or sarcoidosis or something else. It’s all relative, really.
Comparing apples and oranges is a waste of my already limited energy. I have sarcoidosis so it’s this disease that I must learn to live with…day by day…hour by hour. This is the monster that lives inside of me. This is the cross I have been asked to bear. This is the life that I live. I struggle for breath. I cough. I ache. I wheeze. I shuffle in pain. I am uncertain about my future. I am alone in my journey. There is something about having a chronic condition that is very lonely. I liken it to a death. Everyone is around in the beginning, offering condolences and kind words but eventually everyone slowly disappears as they return to their ordered lives, leaving you alone in the chaos of your grieve. It’s a journey without end until the end. Wishing it were cancer instead of sarcoidosis, is a wasted wish, a foolish wish, an unhelpful wish. There is nothing good about cancer. There is nothing good about sarcoidosis expect that this is the devil I know… so at least I know the devil I must fight.
Today a friend my mine posted a lovely picture from her garden on Facebook with the caption, “Bloom where you’re planted…” I immediately thought…”what a great idea for a blog post.” So, thanks Cheryl.
Anyway, this idea of blooming where you are planted is an interesting one when you have a chronic illness because, you actually just feel like you are suffocating among the weeds of all your nagging, nasty, mean, ugly symptoms. I realized after reading this quote today that it’s up to me to weed my garden, to tend to my needs, to grow despite the weight of it all.
With sarcoidosis, what does weeding my garden mean? Well, it means changing bad habits and making healthier choices. It means clearing away unnecessary stress. It means changing my diet. It means getting enough sleep. It means regular daily exercise. It requires tenacity and vigilance and persistence because the weeds in my garden grow quickly and without mercy, attempting to snuff out all beauty and color in my life.
Tending to my needs means finding good healthcare professionals who understand my disease and listening to them. It means learning to be a good advocate for myself. It means figuring out how to live a peaceful life. It means letting go of what doesn’t matter. It means striving to be happy regardless of my losses. It means learning to say no without guilt. It means listening to what my body is trying to tell me. It required disciple because self care feels selfish but learning to care for myself is really the only true way that I can then care for anyone else.
Despite all that my disease has done to me and taken from me, I really do try to bloom right where I am, in the thick of its choking weeds. I rarely stop to give myself credit for how hard I have worked at accepting this life and making the most of it. The choice is really mine to make. I can be stifled or I can reach for the sun. I may not have asked for this to happen to me but I am rising to the challenge and I haven’t withered yet. I think I really have bloomed where this disease planted me and that is a beautiful thought.
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:
- 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
- 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
- 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:
- Add drained beans to a small mixing bowl and add lemon juice, olive oil, sea salt, and fresh parsley. Toss to combine. Set aside.
- 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.
- 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.
- 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!