Five Things…

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Five things I wish I could go back and tell myself when I was newly diagnosed with sarcoidosis:

  1. Nothing is ever going to be “normal” again. You will lose your career and this will be devastating for awhile. Your life is going to change in ways you never imagined and this will be sad and scary. You will grieve. It will also be exciting and challenging and rewarding because you will learn that you never give up. You will figure out how to make the best of it. You will learn to develop your artistic side. You will write a blog, learn to draw and paint. Nature photography will become a newly found passion and you will be good at it. Despite this disease, life is still a worthwhile experience and, in some ways, it becomes more rewarding now because you are sick. You will learn to cherish what matters most and let go of what doesn’t. You will learn to live with dignity despite the fact that this disease continues to attack your physical wellbeing.
  2. Learn all that you can about sarcoidosis and do not be afraid to know more than your doctors because you will know more than most of them. Question them if they say something that doesn’t make sense to you. Be a strong advocate for yourself. You deserve good care and the only way to get it is to be an informed patient. Take an active role in your healthcare and look at your relationship with your doctors as a partnership instead of a doctor/patient relationship. Make informed decisions about your treatment and include those closest to you in those decisions.
  3. Finding an inner strength will be the key, not only to surviving life with sarcoidosis, it will be how you learn to thrive. It is in you. Strength is found in many forms. It is a positive attitude. It is being okay with being afraid while still doing what must be done. It can be found in tears. You will need to dig deeper inside your soul than you ever have before and with brutal honesty, you will need to accept that you are changed both physically and mentally. This is how you are going to move on with your life. It will be a process that is painful but rewarding. You will come to know yourself profoundly better than you did before you got sick and you will learn to trust yourself completely. This trust will help you improve your relationships with others. It will also help you let go of those who refuse to acknowledge your journey.
  4. Take exceptionally good care of yourself physically and emotionally because doing this is better for you than any prescribed treatment. No one else is going to put your needs first. You have to learn to do this for yourself and you have learn that you are worth it. Learn to set boundaries about where to put your energy and do not feel the least bit guilty about it. Eat a healthy diet, get enough sleep, reduce stress and get regular exercise. Don’t make excuses not to because, in the long run, it will these things that keep you as healthy as you can be. Practice the art of daily gratitude because you will come to understand your own attitude plays a major role in the quality of your life. Life in a body ravaged by sarcoidosis is not easy but you will find peace and you will be happy again.
  5. Life with a chronic health issue like sarcoidosis is a marathon. It is important to pace yourself. You won’t have the energy you used to have. Your mind won’t work the way it used to and no matter how well you take care of yourself, you will be physically weaker than you think you should be. You will be in some level of pain constantly. You will need to learn to prioritize your responsibilities, your relationships and your time because your energy will be limited and your pain unpredictable. Sleep doesn’t fix your fatigue and it will be necessary to say “no” to some activities. You will feel guilty but you shouldn’t. You will be alone more and you will have to learn to appreciate the company you keep with yourself. Every day will be different so when you have a bad day, know that the next will likely be better. When you have a good day…rejoice! You are not going to get better. Sarcoidosis has changed your reality forever. It’s up to you to figure out how to make the most of this new strange world and you will. You will learn and grow in ways that are profoundly important to living a truly good life.
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A Touchy Subject…

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I’m going to put a new twist on a touchy subject for those of us who have sarcoidosis and other invisible illnesses because, over the years that I have now had sarcoidosis, it’s something I have come to see very differently since I was first diagnosed.

One of the things I often hear people with sarcoidosis say, is how much they hate it when people tell them how good they look. I get it. I used to hate it too. It can feel like our experience, like the veiled war our body is waging against us, is being discounted. We already experience enough ignorance from the medical community we are forced to deal with, that any additional belittling of what we go through, simply feels like a deeper injustice. Depending on the tone, sometimes when people tell us that we don’t look sick, there is a hint of judgement and we are made to feel like liars. We are NOT liars!

All of that being said, I have come to view this comment and ones like it in a new light now that I’ve had this disease for quite some time. I have learned to not only accept the confusion “the well” feel toward me, I have come to better understand the part I play in that confusion. I really don’t look sick. I don’t look sick, in part, because I choose not to look sick. I work hard at it too. I take care of myself…physically and emotionally. Doing this means that I am not going to “look” however it is a sick person is supposed to “look”. In the face of unyielding physical discomfort from a disease that robs me of air and leaves me feeling like a wrung out dish rag, it really would be easier to let myself “look” sick, to not make the effort to get up and get dressed. I can’t deny that there are days when my bed does call my name and the thought of staying un-showered and in my PJs all day is tempting. Part of surviving this disease, at least for me, is to resist that call as much as I can!

I regularly exercise too. I appear to be in good shape and, I am in good shape for someone with this disease! I get dressed in clean and stylish clothes almost every day even though I sometimes have nowhere in particular to go. I wear make up. I get my hair done. I smile a lot and I try to find some joy in every day, despite how much physical pain I might be in. I don’t spend a lot of time talking about my symptoms. I try not to dwell on how badly I ache. I quietly live with my sarcoidosis because it is simply part of me now. I don’t try to hide my disease on purpose…exactly. I want to look good for myself. I want to live my life as normally as I can, despite whatever this disease is doing to my insides. Part of doing that is looking as good as I can. It’s what I would do sick or not. It’s about self respect for me, about still trying to like myself even though sarcoidosis tries to trick me into thinking I am worthless.

So, when I am putting all this effort into looking like what others would call “normal”, how can I actually be mad at them when that’s what they see? I can’t. It’s also a waste of energy. I find being frustrated by the understandable ignorance of those who have not suffered with the troubles, pains and fears of living with in invisible illness, is a useless endeavor. Now when someone tells me that I don’t look sick, I take it as a complement. It means the effort I am putting into trying to live normally might actually be working! I thank them and I mean it. But, I also take it as an opportunity to educate. I politely explain that looks can be deceiving. I find that when I do this, without anger or bitterness, people are interested and because they are interested, I leave them educated instead of annoyed with me for getting defensive and, maybe…just maybe…they will think twice before judging someone’s insides based on what they see on the outside.

I like that I get told that I don’t look sick. I like that I am able to carve out some normalcy in my life. This is just one way that I do that. In full disclosure and in all honestly, I must admit that before I was diagnosed with sarcoidosis and, before my insides decided to take a stab at me, I too had no idea what those with invisible illness go through. I was ignorant and I no doubt, said things, without intending to cause harm, that probably did hurt people engaged this very private struggle. So, before I get angry with people who tell me that I don’t look sick, it has helped me to remember my own ignorance and the innocence in it. I meant no harm…I just didn’t know any better. It also helps me be honest about the fact that I play a role in the confusion others might feel about my being sick. I really don’t look the part because I don’t want to look the part. I don’t want to be sick…so…I’m glad I don’t look on the outside, the way I feel on the inside. How ugly I would be! For me, this is one small battle I feel I’ve won! For me, being told that I don’t look sick is now cause for celebration instead of anger.

47 Things…

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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)

  1. 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.

The Treatment Conundrum

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To treat this disease or not to treat, that is the question with sarcoidosis. But, it is only one question. There are others that are equally as important. How long to treat the disease is one and another is what to treat the disease with.

Let’s be clear on one thing before I say anything else: there is no cure for this disease. Treatment, when given at all, is for symptom management only. I think this is important because it can also be confusing, as some people truly do get better with treatment. Others, though, do not. In fact, sometimes people get worse, while others simply stabilize with treatment. Still, a great many with this disease don’t require any treatment at all as the disease is either asymptomatic or very mild.

Another interesting tidbit about treatment for sarcoidosis is this…the treatment itself can cause more harm than good; yet for some people with this disease, despite these risks, treatment is life saving. Scratching your head yet? Well, it gets even more confusing…just wait.

The most widely used, or as I like to call it, the “go to” drug, for sarcoidosis is prednisone. Often high doses of it, too, for long periods of time. Prednisone is a synthetic drug, similar to cortisone, and is used as an anti-inflammatory or immunosuppressant medication. You see, the problem with sarcoidosis is that it causes widespread inflammation throughout the body as a result of an immune system overreaction to something that was once real or imagined. With sarcoidosis, the immune system’s off switch is broken; this causes the body to remain in an unnecessary high state of alert trying to heal an imagined or now retreated foe. When the body remains inflamed too long, the immune system’s “defender cells” can begin to form clumps that then interfere with proper organ function that over time can lead to organ damage. The goal of a drug like prednisone is to reduce the inflammation and reset the immune system and break up these fighting cells. Sometimes it works, and sometimes it doesn’t.

But, long term prednisone use comes with its own risks…excessive weight gain, psychological effects, high blood pressure, glaucoma and cataracts, osteoporosis and thinning skin to name a few.

There are other powerful drugs, too, that can be used to suppress the immune system if prednisone does not work. Drugs like methotrexate which, while taken in lower doses for sarcoidosis, is actually a chemo drug. Then there are drugs like Cellcept, a drug created to help transplant patients minimize the risk of organ rejection but used in sarcoidosis to calm the immune system. Oh, and there’s a drug called Plaquenil created to treat malaria but again is used with sarcoidosis as an immunosuppressant. There are others too but by now you are probably getting the idea. There is no drug created specifically to treat sarcoidosis and all of the medications that are used are complex drugs with a myriad of debilitating and in some cases damaging side effects. Yet for some people, if sarcoidosis itself is left untreated, it leads to the need for organ transplants or death.

Unfortunately, there are also the snake oil salesmen out there, too: people who promote cures for this disease just trying to make a buck off the fears and uncertainties of the weak and vulnerable. I always caution newly diagnosed people that if someone is trying to tell you that he has a cure for this disease, he is not telling the truth. Some people like to share their stories by saying that they did this thing or that and suddenly the disease just went away. In reality, it’s likely that was the course the disease was going anyway with that particular person.

Of course, there are things those of us with this disease can and should try to do to better manage it. Eating a healthy or clean diet is one, and so is trying to find a way to get regular exercise. And there are natural things that can be used to help some people manage their symptoms better, essential oils, supplements, etc…but there is absolutely no cure for this disease. Period. The reality of this disease is that it does not play out the same way for any two patients, not the course of the disease or the need for treatment or the response to treatment. Those of us with it are truly all snowflakes. No two of us are the same. We don’t all have the same symptoms nor are we diagnosed in the same way (more on that in upcoming post).

So, I say all of that to say one thing…I never tell others what they should or should not do regarding treatment. This disease is too complex for me to even begin to guess what might work for someone else and the question to treat or not treat, for how long and with what is very personal indeed. It truly is a confusing and difficult question to answer…no doubt about it.

Listen To The Silence

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Much can be heard in silence.  

Silence speaks louder than the common use of every day words. Silence tells the truth. It is blunt, sometimes rude. Yet other times, it is the most polite response. Often peaceful but sometimes very tense. Silence challenges the imagination. It forces the senses to figure out its meaning. Silence is its own kind of beauty, full of presence and grace. Silence holds more power than any spoken thought.  

It is wise be silent. 

A gift, not given nearly enough. 

Aging…

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A thing that has the advantage of wisdom.

A thing that has the drawback of weakness.

A thing full of haunting beauty.

A thing that brings wicked decay.

A thing that steals future plans.

A thing of unstoppable inevitability.

A thing that has the downside of wrinkles.

A thing of sharp sadness.

A thing of maddening frustration.

A thing full of unexpected grace.

A thing that cannot be controlled.

A thing that offers the benefit of hind sight.

A thing that collects memories.

A thing often fought without success.

A thing of unsettling mystery.

A thing that teaches humility.

A thing to be accepted.

A thing of commonality to all creatures great and small.

Borrowed Time

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My older dog Zoey, who is 12 years of age, gave me a tremendous scare over the weekend when she decided, quite out of the blue, to eat azalea leaves. This was apparently a ridiculous thing for her to do because these leaves are highly poisonous to dogs.

She nearly killed herself. She was drooling, vomiting, staggering, confused and utterly sick. Despite my best efforts, laying on the floor with her through the night, cleaning vomit and drool and holding her, there was simply no comforting her.

We did manage to get her to the emergency vet over the weekend and with the right medication and some fluids, she eventually came around.

After the crisis passed, it got me thinking about her and how much I value her and how even though she is 12 years old, I am not ready to let her go. And, that got me to thinking about how there just never seems like enough time to cherish the ones we love. This then made me feel maudlin, and that made me feel nostalgic.

I’ve lived a wonderful life. I’ve been blessed beyond what I deserve. I have no regrets. And even though I had a wistful moment of longing for more time, I also understand that whatever time we are given is the gift we must accept. We aren’t in control of time. It controls us.

The idea of the passing of time and what it means has been a common theme of my blog. My sarcoidosis nudged me pretty hard. It turned my world upside down but in the process, it also gave me a deep and abiding appreciation for life’s limits. Time is one of those limits.

Zoey’s near suicide, albeit accidental, was yet another example of the confines of time but more significantly, it was a reminder that nothing important to me should be taken for granted.

It is both a gift and a bit of a curse to recognize the boundaries of time, of the point beyond which things end. The gift in this understanding is a better appreciation for what is. The curse is a quiet sorrow of knowing that what it is, won’t be again.

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