S is for stupid
A is for absurd
R is for ridiculous
C is for cunning
O is for obnoxious
I is for insidious
D is for devastating
O is for offensive
S is for sneaky
I is for inflammatory
S is for senseless
When it comes on, it takes over your body like a demon possessed. There is no stopping it or sleeping it away. It enters your body, your bones, your muscles at will. It leaves only when it has had its fill.
Like a zombie, you move through the day stumbling, staggering and teetering. You lurch, you wobble, you reel. You lack your once finely tuned agility. Nimble dexterity, a thing of the past.
Fatigue invades your soul and assaults your very being. It takes your dignity, your pride and your passion. The world is dull and dark, as the weight of your own body crushes your spirit and your hope.
Your mind is muddy, dank, depressed and thick. Thoughts come at a snail’s pace and are vague, indistinct and confused. Your brain is full of cobwebs and dust. Your flesh feels like fuzzy unbrushed morning teeth, after a night sleeping with your mouth open.
It is the most unpleasant of out of body experiences as you feel the core of who you are slipping into the most cavernous abyss and a heaviness too big to fight covers you in a doomed sort of melancholy.
Fatigue ravenously snacks on your vitality and the more energy it takes, the stronger it seems to get, growing like that creature from the movie The Blob. It expands and widens as it barrels through your body, unstoppable in its determination to destroy your life and dreams.
It replaces your motivation with profound apathy and emptiness. When it is finished with you, it leaves you resembling a wet noodle, soft and flaccid after being soaked in water too long. After shaking you within an inch of your life, it throws you on the ground, damp and gnarled. You feel shredded and somehow forever shattered in its wake.
It is cruel. It is indifferent. It is savage. It is viciously diabolical in its desire to upend your life. It is ruthless. It is spiteful. It is fiendish. It is singleminded in its mission to demolish your once vibrant world and obliterate your enthusiasm for adventure.
Fatigue is a beast.
Fatigue is an ogre
Fatigue is a monster.
Yesterday, I posted a list of all of the known possible symptoms/complications of sarcoidosis for “Awareness Month.” The length of the list and some of the things on it were even a surprise to some people who have the disease. Since yesterday’s list was a hit, I thought for today’s post I’d simply list all of the known side effects of the treatment available for sarcoidosis.
Within our little community we have often talked about how the treatment for this disease is sometimes worse than the disease itself. There are no curative treatments offered for sarcoidosis. Treatment is for symptom management only and to reduce the potential for organ damage in whatever organ or organs the disease can be found. Remember, sarcoidosis can strike anywhere in the body!
Treatments for sarcoidosis are mostly limited to high doses of corticosteroids, immunosuppressants and low dose chemo therapy…all for extended periods of time. So, deciding if or when to receive treatment is a very personal choice and depends largely on how badly symptoms are impacting one’s quality of life and if organs are being damaged by the presence of granulomas. (In case you forgot, granulomas are those pesky clumps of cells that form in our bodies because our immune system has gone off the rails!)
With all of this in mind and in no particular order, here is a list of possible side effects from the treatments available to those of us with sarcoidosis. Just like yesterday, I am sure once I publish this list, my readers with the disease will inform me of even more side effects/complications from treatment.
There is nothing easy about sarcoidosis!
(*My side effects)
Sarcoidosis is called a “snowflake disease” because no two people experience it exactly the same way. While some people have similar symptoms and stories, the disease is very individualized. How it will progress is anyone’s guess. How each person responds to treatment is also a medical mystery and the number of symptoms one might experience differs greatly. In fact, the symptoms of sarcoidosis are so vast that for today’s “Sarcoidosis Awareness Month” post, I am simply going to list all of the symptoms/complications that I am aware someone can have with this disease. I’m 100% sure that after I publish this list, other suffers will have more to add!
(* My symptoms)
Those of us with invisible chronic conditions often hear that we don’t look sick and within our circle, we have a lot of conversation about how this makes us feel. Many talk about how it makes them feel discounted, like what they are experiencing isn’t real or doesn’t matter, simply because it can’t be seen. Plus, we’ve all gotten very good at hiding the subtle side of being persistently sick.
I used to get annoyed when people would tell me that I don’t look sick. I understand the demoralizing feeling that comes with not feeling validated for your experience simply because someone does not understand it. I think this feeling is the strongest when you are newly diagnosed with a chronic disease/disability. Your world is turning upside down and it is a very scary time so validation is very important and, to not get it because you look better than you feel…hurts.
Now that I’ve been diagnosed for several years, I have a few new thoughts to add to the “You don’t look sick” conversation. I no longer get mad. I know how I was before I become chronically ill and while I never meant any malicious intent, I am sure that I said and did ignorant things to people who were in the boat I am in now, without ever realizing what I was doing. So, I cut people who don’t get it a lot more slack. Plus, I just don’t care anymore. I don’t care what other people think about the way I look. I know the truth and that is all that really matters. I also know that just because I suffer constant pain, I have every right to look as good as I want to look!
Recently though, I’ve had a newer thought on the subject. Not that long ago, I saw a person in a wheelchair outside of a store, probably waiting to be picked up. The person that I saw was clearly disabled, cerebral palsy maybe, I don’t know for sure but, whatever this person was living with was not invisible. As I looked at this person, a thought struck me like a thunder bolt and it’s one I never had before. I became grateful that my disease is invisible. I’m not being remotely critical of anyone with a visible disability here. It’s not this person’s fault their disability is visible any more than it is mine isn’t but, I realized that when your disease is invisible, at least you have some control over it. You have control over it in a way you simply don’t when it’s just out there for all to see.
I have a choice to let people know I am chronically ill/disabled or to blend in. I don’t ever have to explain myself to anyone or to receive pitiful looks from people who might wrongly believe my life is harder than theirs just because I can’t do everything I want to do. There is something to be said for being able to blend in when you want to. There are times that blending into every day society is just easier. It gives me an escape from my own reality that the visually disabled never get. I can forget. They can’t. They are reminded of their physical challenges constantly. I am not. I mean I am, because of how I feel but not because of how other people react to me. That’s what I mean when I say, at least I have some control. I can avoid other people’s pitiful pity whenever I want to. I’m actually grateful for that and I’d never thought about the fact that there are actually some advantages to having an invisible illness. This is one of them.
Because my disease/disability is not obvious, I have the advantage of living in two worlds. People don’t stare at me. I don’t feel their glare as I do my grocery shopping or try to enjoy an evening out with friends. I don’t usually have people automatically assume things about me unless I tell them I have an invisible chronic disease. It’s only then that I am sometimes forced to deal with their ignorance but for the visually chronically ill/disabled, dealing with ignorance is a constant. One may not better than the other, invisible versus visible, they are just different. Being chronically ill/disabled is hard but the realization for me that having in invisible illness actually gives me some control, is a new and empowering thought!
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)
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.
I don’t know a nice way to say this, probably because quite simply, there isn’t one but I find this disease to be a sneaky little bastard.
Why do I say this? So many reasons, but let me start by saying that its unpredictability is nothing short of maddening. The path it takes twists and turns like a dangerous mountain highway and sometimes it feels like the oncoming traffic is going to smack you squarely to your core.
First there is the path to diagnosis. Since sarcoidosis is a disease of exclusion and a mimicker you can be told you have anything from lupus to MS to cancer to name a few. You are poked and prodded and x-rayed and scanned. You are biopsied again and again. Finally after you’ve been terrified out of your mind with worry that you’ve got the big “C”, you are suddenly and abruptly told…nope…it’s sarcoidosis.
Then, you get told that having sarcoidosis is a good thing. Really and truly…that’s actually what they tell you! How about that. A good thing. A few months of treatment and you should be on your way back to a normal and healthy life. Hope soars that you will easily go into remission. You quickly figure out, however, that your symptoms are not in fact easily managed. The drugs they put you on have wicked and evil side effects. You either become a bloated monster, or in my case, a shrinking violet losing strength by the day.
The symptoms begin to mount. At first it was just a little shortness of breath. Now you cough all the time, wheeze, get wildly unpredictable fevers and, night sweats that make you want to call the fire department for relief as you feel the flames shooting out of your pores. A fatigue sets in that makes you feel like every single step is like trying to slog through a muddy field but the mud is waist high. Eventually, a range of other weird and difficult to describe aches and pains creep up on you like a child playing a prank you never saw coming and it doesn’t make you laugh. Headaches, joint pain, back pain, bone pain, numbness, cold extremities, muscle aches, weird burning sensations and on and on. Your doctors can’t explain these strange symptoms and sometimes they look at you like they don’t even believe you but, it’s real…it’s all real!
To top it all off, everyone tells you how great you look. They say well meaning things that actually cut to the core. Things like, “Gee, you don’t look sick”. Or my personal favorite, “Wow, but you look great. How sick can you be?” Their comments, meant to make you feel good, only leave you feeling more alien in your own skin.
You begin to withdraw, not because you want to but, because the disease is having its way with you. You simply no longer have the energy to participate the way you once did and you realize some people think you are faking it. This only adds to the demoralizing sense of frustration you already feel for having this stupid disease in the first place! A feeling of complete and utter loneliness begins to set in. You are entirely misunderstood by your doctors, your family, your friends, your co-workers, your neighbors, your pets….you name it…no one gets you anymore…some days you don’t get yourself. You wonder where you’ve gone and if you’ll ever be back.
Suddenly you have a good day! You slept well, no night sweats keeping you up, tossing and turning with covers on and covers off and, covers on again after the sweat finally dries and you are left freezing like someone left you out in the cold without your coat and hat. You have energy as a result of sleeping well so you decide to tackle a long overdue project around the house. You’re so happy to feel human again.
One of two things happens next; Either you get through it without incident and are as proud of yourself as you would be by your child brining home their first A grade from school. Or, half way through the project you realize that you bit off more than you can chew and yet another home improvement project only gets done half way. It starts to feel like your house might fall down around you. You never lived like this before this monster crept into your being, leaving “To-do lists” undone and your home in disarray.
If you managed to complete the project and are beaming with pride, you start to ever so subtly fool yourself into thinking you’ve got this nasty disease licked. You start planning for tomorrow’s chores, full of aspiration. Sadly, when the next day comes, you wake up feeling like you were hit by an eighteen wheeler and realize how wrong you were. You tell yourself that you won’t ever let yourself get fooled again! Resolve in the knowledge that this disease is actually bigger than you are, you tell yourself that you’ve got a handle on it. You readjust your expectations.
A deep despair sets in as you start to notice that life is a house of cards, at any moment it could all come crashing in. You didn’t realize that readjusting your expectations really meant that you had to say goodbye to your old life. You find yourself engulfed in unrelenting grief. You know that you need to fight off the weight of this depressing new reality.
Out of the blue, another good day. This time it’s a trip to the doctor where you are told your CT scan or x-ray or whatever test it is they decide to give you that day looks good. You think, maybe I will beat this S.O.B! After all, you are doing all the right things. You have changed your eating habits, you are taking your medications as prescribed, you are trying to exercise as much as you can. You have learned to listen to your body. You begin to feel like you are the captain of your own ship once again. You’re in control! Remission looks to be around the corner. Brighter days are ahead for sure!
In the meantime, what you desperately fail to realize is that you have only grown accustom to your new normal. You are in fact, short of breath all the time but, you no longer notice it. You are fatigued all the time but, you have learned to slog your way through the heaviness of this strange new world. You don’t realize that most people don’t have pain screaming through their body day in and day out. You have unknowingly put on those waist high boots and are in fact pulling yourself through the mud and the muck every day. It has just become normal. You think you’re doing great and you’re so proud of yourself for overcoming the beast.
When you go to your next six month follow up, take your pulmonary function tests or whatever tests you are given that particular visit, you learn just the opposite. You learn that despite a clearer x-ray, your lung function continues to worsen. Your goals haven’t actually changed at all. You are still in the same place you were when this sneaky little bastard took hold. Now the most you can hope for is stability. Remission is no longer discussed. You can only hope to stay off oxygen as long as possible. The damage is done and it is significant. It cannot be undone. There is no healing in sight.
Eventually, you realize that life goes on, although forever altered. You know that you must continue to do what you can to live as well as you can. You must bury and say goodbye to the old you. Life will never be what it was and as you bury your old self and say goodbye, you realize one thing. You become sure that you will never let this sneaky little bastard get the better of you again. You know once and for all this is serious stuff and that you are now locked in a battle of wills against this lousy disease. You know that you have to accept the new you and you know you will never allow yourself to be fooled by this sneaky bastard of a disease ever again.
(Originally written January of 2014 – when I was only a few years into my diagnosis and still trying to figure out what life was going to be like with sarcoidosis. Now I know…now I know that it’s a battle and I intend to WIN!)
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.
When you are part of the world of chronic illness, you often hear that you are a “warrior.” You hear that you must be strong to live like you do, that you have a lot of fight in you. How else could you live with a beast inside your body, day in and day out and not go to war with it? The alternative to warring with the beast inside you is to give up, give in, let go and die.
Perhaps it seems a bit dramatic to bring up death but there is more than one way to die. When you live in a constant state of uncertain health and your body is riddled with unstoppable pain, weird unexplainable aches, massive weariness and frequent episodes of mental obscurity, you can become discouraged enough to isolate yourself from the rest of the world and this is a certain kind of ghostly death. Giving up on your life while still existing is in fact, fatal. Having all of the quality of your life stripped from your world is dispiriting and is the sort of living death that comes with a chronic condition if you don’t consciously choose to fight for more than subsistence.
Chronic illness will kill your spirit by stealing your health first, then your happiness, then your feeling of security, then your income and career, your home and finally your relationships. It will take and take and take from you until nothing is left. Until you no longer feel valued or that you bring value to the world. Chronic illness will seek to shrink your world and your worth until it is so small you have nothing left and no reserves to continue fighting.
Even though there is no disputing life with a chronic health condition can be daunting, there is an alternative to living death. You do not have to live like a whisper in your own story but you need to keep some weapons at the ready. One of them is to put on your battle armor every day. This means getting up and getting dressed. Getting up and getting dressed might seem like a no brainer to those who are not chronically ill but, that just means you don’t have to sit down and catch your breath after you shower. For many of us with a chronic condition, the thought of getting up and looking our best is a huge challenge but if you don’t do it, your disease wins. That isn’t to say that a day on the couch now and then isn’t necessary, of course it is. Rest is important when you are fighting a chronic condition but it’s not an excuse for giving up.
Getting up and dressing up are only two weapons in your arsenal. When you are chronically ill, attitude is absolutely everything. You can see the world as a devastating place, as if everyone has given up on you and you on them or, you can decide to make the best of a difficult situation and even if your world has shrunk, even if people have stepped away from you because you can’t keep up with them anymore, you can still give whatever is left of your world, the best you have to give. You can still make a conscious choice to take pride in your life, even if your life isn’t what it once was and you will feel better about yourself for the effort.
There is no doubt that living with a chronic illness changes you. Accepting that life is different, grieving the loss and change but then showing up, battle ready, for what’s next is the only way to find any harmony, it is the only way of sustaining any peace. It is what must be done if you want to be defined by more than your disease. Careful consideration of your outlook, daily inventory of your attitude and where you are in your ability to accept your current circumstances are basic requirements for combat. These are the things that make you a “warrior.” These are the things that give you the will to fight so that you can do more than exist, you can do more than survive. Having a life with chronic illness does not mean you cannot thrive. You can…if you show up and fight!
Don’t panic. Sarcoidosis is a very individualized disease. While there are some similarities in what we experience, each of us walks a very personal path and many people with this disease continue to live very normal, happy lives. Stay positive.
Connect with others who have the disease. Learning that you have a potentially chronic disease can be overwhelming and, learning you have a disease like sarcoidosis that so few have heard of and is unpredictable can be frustrating and scary. Getting to know other people who have already walked on their path for awhile can bring you great comfort. It’s important to know that you are not alone.
Get educated about the disease. Since sarcoidosis remains a mystery to the medical community and since it is pretty rare, there are actually a lot of doctors who don’t know that much about it. Being educated about the disease will help you find one you trust and it will help you be your own best advocate and there will be times you will have to advocate for yourself!
Don’t believe everything you read and hear about sarcoidosis. First, don’t assume all the terrible things you might read or hear about someone else’s experience will happen to you. You will have your own journey with this disease. Many people do go into some kind of remission/inactive phase of the disease. Whatever happens in your case, you will find a way to cope. Secondly, don’t believe anything you read about miracle cures or treatments that sound too good to be true. There is no known cause or cure for sarcoidosis. Sadly, there are some scams out there who will gladly make a buck off your pain and fear. If it sounds too good to be true, it is too good to be true!
This is a marathon and not a sprit. It can take awhile to get a proper diagnoses because sarcoidosis mimics many other diseases. The only true way to know for sure if you have it is through a biopsy. Once you are diagnosed, even if it is not impacting your heart or eyes, get both checked and then have regular annual eye exams with an ophthalmologist familiar with the disease.