The Beast…The Ogre…The Monster!

Tags

, , , , , , ,

sarcoid

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.

Nothing Like A Good List To Demonstrate The Point!

Tags

, , , , , , ,

sarcoid hope FB

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!

  • Weight gain
  • Mood changes
  • Moon face
  • Dizziness/Fainting*
  • Headache
  • General irritability
  • Noisy rattling breathing
  • Pounding in the ears
  • Red burning feeling to the face
  • Swelling to hands and feet
  • Brain fog – trouble thinking and speaking*
  • Blurred vision
  • Fast beating/Irregular heartbeat*
  • Chest pain
  • Black tarry stool
  • Hair loss
  • Nausea*
  • Mouth sores
  • Stomach pain*
  • Metal taste in mouth*
  • Dry mouth*
  • Increased fatigue*
  • Joint pain
  • Drowsiness
  • Bone pain
  • Feelings of anxiety/nervousness*
  • Shakiness*
  • Nerve damage*
  • Fever/Chills
  • Cough
  • Hoarseness
  • Shortness of breath
  • Lung damage/Fibrosis
  • Lower back pain
  • Increased risk for colds/flu/pneumonia*
  • Jaundice
  • Liver damage
  • Usual bleeding
  • Low white blood cell counts
  • Bruising easily*
  • Loss of appetite
  • Muscle pain
  • Acne
  • Constipation
  • General weakness*
  • Numbness and tingling to feet
  • Diarrhea
  • Edema
  • Changes in urination
  • Hives and itching
  • Skin changes/growths
  • Pale skin
  • Increase risk of cancer
  • stuffy nose/Sinus pain
  • Sore throat
  • Increased risk for developing diabetes

(*My side effects)

Symptoms, Symptoms and Hey..More Symptoms!

Tags

, , , ,

17796294_10209315627743932_7703245766147881508_n

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!

  • Shortness of breath*
  • Dry cough*
  • Chest tightness*
  • Wheezing*
  • Hypoxemia*
  • Pulmonary hypertension
  • Swollen lymph nodes*
  • Headaches/Migraines
  • Fatigue*
  • General malaise*
  • Fevers*
  • Skin sores*
  • Skin discoloration*
  • Itchy skin
  • Rotting teeth
  • Bone pain*
  • Formation of cysts on the bone*
  • Muscle pain*
  • Muscle weakness*
  • Numbness and tingling to extremities
  • Joint pain
  • Arthritis
  • Nerve pain*
  • Small fiber neuropathy*
  • Bell’s palsy
  • Stomach pain
  • Digestive problems
  • Food sensitivities*
  • Bladder problems
  • Problems sleeping/Insomnia
  • Sleep disorders/Sleep apnea
  • Brain fog and confusion*
  • Sexual dysfunction
  • Night sweats
  • Being cold all the time*
  • Wild fluctuations in body temperature
  • Blurred vision
  • Sensitivity to light*
  • Blindness
  • Unintended weight loss*
  • Chest pain
  • Fainting*
  • Dizziness
  • Irregular heartbeat*
  • Edema
  • Complete organ failure
  • Stroke
  • Depression
  • Nasal stuffiness
  • Excessive nasal drip*
  • Frequent nasal infections
  • Hoarse voice
  • Kidney stones
  • Hearing loss
  • Seizures
  • Enlarged liver
  • Enlarged spleen
  • High blood pressure
  • High cholesterol
  • Hypervitaminosis-D
  • Weight gain

(* My symptoms)

A New Take On “So, You Don’t Look Sick”

Tags

, , , , , , , ,

17796745_10208660869386128_861209056552237174_n

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!

47 Things…

Tags

, , , , , , , , , , , , , ,

17632139_1859225064366285_7622345085379112947_o

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 Odd Couple

Tags

, , , , , , , , , ,

 

sarcoid changed my life

So far for sarcoidosis awareness month, I’ve written a lot about the challenges I and others face. It’s probably a no brainer to some degree, to understand that diseases are hard to live with, even ones most people know little about or have never heard of. Sarcoidosis is hard to live with and I make no bones about that. There is however, another side to life with this disease and I think it deserves to be highlighted. Some with this disease may agree with me and some may not. I can only speak from my own experience on this one.

With all the darkness that comes from life in a diseased body, there also comes equal and sometimes greater light. That light, isn’t exactly a light. It’s enlightenment. Having a chronic, life changing disease gave me a couple of options. I could either wither and drown in its presence, allowing it to define my entire world view or, I could use my struggles with it to build my inner strength and summon courage I never knew I had to change my world view. Sarcoidosis put me at a crossroad and I had a decision to make…wilt or thrive.

Over the years that I’ve had this disease, I have grieved losses. My body no longer cooperates the way I want it too. Breath does not come easily. I have lost friends who have moved on without me because I can’t keep up and I lost a career that I loved. I would be foolish to deny there hasn’t been emotional pain and real hardship from having sarcoidosis and I’m generally not known to be a fool. Yet despite these losses, or maybe because of them, I have become acutely aware of what really matters.

Sarcoidosis and gratitude are an odd coupling but I have to say that since being diagnosed with this disease and settling into all that it means to have it, I have become an extremely grateful human being. There is something about losing the ease of good health, that made me realize how much I took for granted. I didn’t see that what I thought I deserved, what I thought I earned, really never actually belonged to me.

One could argue that sarcoidosis took my life and it did. It took my life as I was knew it but, I would argue that it gave me a new one, one I did not ask for but one I find myself in a place of great comfort to have. Were it not for this disease, I would still be flitting about fusing over all the nuances in my life that aren’t just so. I would be bouncing from superficial problem to superficial problem, putting my energy and effort into frivolous endeavors. I don’t care anymore who said what to who or why. I’m no longer focused on getting my fair share. I don’t keep score and I don’t compare myself to anyone else.

I’m not saying that before this disease I was shallow and unable to appreciate my life. I’ve always had some awareness that my life is blessed but, there is something powerful in being humbled by illness and disease. It has changed me. The blessings I feel now are far greater in number and much more deeply rooted in the understanding that I don’t actually deserve the good that I have. I am, for reasons not known to me, favored. Sarcoidosis has actually taught me to think this way, to see life as an immeasurable gift, something to be cherished….even when it’s difficult.

This might sound disingenuous, but part of me is actually very grateful for my disease and that’s the truth. This peaceful reality hasn’t always been true. I was angry about being sick once. I was sad about it too. Sometimes I’m still sad about it but I don’t get angry about it anymore. I’ve come to understand that every person carries their own heavy load of something. Mine happens to be navigating a life with a chronic and potentially life threatening disease. It hasn’t been an easy experience but it has been an insightful one.

Sarcoidosis has been my greatest teacher, a mentor of sorts. It has taught me how to accept what is ultimately out of my control and in that process, it has shown me that the only thing that I’ve ever really had control over is my attitude and reaction to any given situation. Sarcoidosis has taken but it has also given and because of this I have learned the value of appreciating what I have when I have it because it might be gone tomorrow.

I don’t know what lies ahead for me in regard to my disease but I know whatever the future holds, I will face it with grace and I will deal with it from a place of thanksgiving for the life I have already had. Having sarcoidosis does not take away my ability to be joyful and to see the what is good all around me. If anything, having sarcoidosis has only magnified my desire to be at peace with the world and to accept what is as what is meant to be.

Sneaky Little Bastard

Tags

, , , , , , , , , , , , , , , , ,

17796128_1675754719107397_3310528276320830728_n

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!)

Awareness Now…Awareness Always

Tags

, , , , , ,

sarcoid awareness FB

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.

My Sarcoidosis Family

Tags

, , , , , , , , , , , , ,

sarcoid awareness warrior Fb Profile

Like a lot of people, when I was first diagnosed with sarcoidosis, I took to the internet. I needed to learn more about this strange disease. In my quest to find more information about it, I also found other people who have it through online support groups. In these groups, I came to understand the power of grace, the meaning of kindness and the joy of unconditional friendship.

When I was newly diagnosed, I was scared and confused and I had a lot of questions. People who were well experienced in living with this disease held my virtual hand as I began the relentless journey of life with a chronic illness. They patiently eased my anxiety about the unknown. They gently guided my attitude to a better place and they showed me overwhelming amounts of love and encouragement when I felt my lowest. Without them, I would have been utterly alone as I faced a life altering voyage into the world of the unwell.

As I’ve come to know my virtual sarcoidosis family, I’ve observed some pretty amazing things about them. They rarely complain and when they do, they always apologize for it. No matter what they feel or what they are going through, they will always make time for someone else in need. My virtual family is brave. They are fierce and they are proud. Having sarcoidosis does not stop them from striving to live their best lives.

My sarcoidosis family sets an example for me about the kind of person I want to be with this disease. I want to be strong. I want to stay positive. I want to keep my faith and I can do all of these things because my sarcoidosis family gives me the drive to remain focused on what is in my control, rather that what isn’t. I would not be doing as well as I am without the collective power of my virtual clan of sarcoidosis warriors!

We are a relatively small community. We have lost members and when we do, we grieve together. We cry for their families and share in their pain. Every time someone in our sarcoidosis family leaves us, we feel the hole they leave behind and their loss only makes us want to fight harder to find a cure.

Having sarcoidosis sucks. That’s just the way it is. It makes daily life difficult. It’s unpredictable. It hurts. It’s hard to breath and it is a challenge to think straight. When you live with chronic sarcoidosis, your world shrinks because you simply cannot keep up with the rest of it. It can be lonely and it is easy to feel abandoned by people you once thought were your friends. They don’t mean to leave you behind. They just don’t understand your experience and as a result, they drift away. For all these reasons, it is important to connect with those who do understand, who have walked in your shoes.

During Sarcoidosis Awareness Month, I want to take a moment to say thank you to this beautiful tribe of people who keep me from feeling abandoned and who inspire me to keep fighting. I’ve been formally diagnosed with this disease now for five years. My goal is to pay to forward. My hope is that I can be the comfort someone new to this disease needs, that I can bring them safely into the fold of the loving arms of this wonderful virtual family.