The Answer

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Acceptance only comes after awareness.

Acceptance is acknowledging what can’t be changed. 

Acceptance doesn’t mean liking something. 

Acceptance changes perspective.  

Acceptance is not resignation. 

Acceptance brings peace. 

Acceptance and attitude go hand in hand. 

Acceptance creates opportunities for growth. 

Acceptance requires tolerance. 

Acceptance is humbling. 

Acceptance is a process. 

Acceptance only happens with patience. 

Acceptance is an act of self-restraint. 

Acceptance is relinquishing control. 

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As Real As It Gets…

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I have to just say this, while it’s fresh on my mind, right now, this moment…I have to admit that living with a disease like sarcoidosis is hard. What makes it hard isn’t the physical pain, although it’s unpleasant, but the fear of what this disease is going to do next. Not every day is hard, not every moment is scary, but just generally, it’s difficult and sometimes overwhelmingly so. Often, I can shove it into the recesses of my mind, to will it out of the way, so that I can live as normal a life as possible. I’ve learned to cope in ways I usually take for granted, like budgeting my time and energy where I need it most and like tuning out constant annoyingly unpredictable levels of pain. I have learned to forget what was once normal, what healthy was. I’ve adjusted to a new way of living. I won’t call it a “new normal.” I hate that expression. There is nothing normal about life with a disease like sarcoidosis. There is nothing normal about gulping for air or arguing with yourself to accomplish simple tasks like folding laundry or grocery shopping.

Despite my built in denial system, there are times in my life when this disease smacks me in the face and reminds me that it’s real, it’s part of me and it’s not going anywhere. Times when I get sick or injured and it takes me eight million times longer to heal than someone who doesn’t have a disease like sarcoidosis is one example. Another, is when I fall down from dizziness because my pulse oxygen level drops into the “danger zone.” I find myself reminded that this disease is a stubborn shadow lurking in my life when my husband looks at me with pitiful eyes after I’ve been coughing and wheezing for several minutes or when I am too weak to stand or climb stairs on my own.

As hard as I try to keep the fear of what this disease can and probably is doing to my body at bay, as hard as I work to combat this disease and the side effects of all the stupid medication I take to manage the symptoms of it, the fear patiently loiters, like a peeping tom it watches me and waits and, even though I can often quiet the fear, push it into the depths of my core, it never really goes away. The fear remains with me always, like the hum of a fluorescent light bulb. My fear is really just one more symptom of this disease, one more thing I have had to learn to manage.

Once and awhile though, something happens to kick that fear into high gear and it doesn’t even have to be something that happens to me. It can be something that happens to someone else in my small community of friends and fellow soldiers who wage their own private hellish war against this mean monster of a disease. I am experiencing one of those “once and while” moments now. I found out just a few days ago that a friend of mine with this lousy disease had a double lung transplant. This news is both exciting and terrifying. I am thrilled her moment has finally come to try to get a second chance at a better life, of course. And, this is something she must do if she wants a fighting chance at being around for any length of time for her family and loved ones.

I find myself feeling both hopeful and enormously anxious, terrified really. This is major surgery and that’s always scary but, couple it with a chance of organ rejection and it’s spine tingling. At the same time, if all goes well, she will be free of supplemental oxygen. She will be able to breath on her own and she will reap the rewards of what could truly be a more normal life. Whatever happens next, the journey will be long and the healing slow. I will hope for the very best for her because she deserves it. She is an inspiration to a lot of us with this disease and her legacy always will be.

My feelings about her journey are also selfishly personal. Whenever I hear a story like this, it is an acute reminder of the reality of how dangerous this disease is. No matter how I run from it, sarcoidosis is always one beat away for catching up with me. Stories like this remind me that sometimes, sarcoidosis could not only catch up to me but it could overtake me and leave me with limited options. There are times sarcoidosis has already left me blooded and bruised, beat up and worn out. There are times sarcoidosis has already forced me to make very difficult health and lifestyle decisions. Sometimes sarcoidosis refuses to live in the background and when this happens…sarcoidosis is as real as it gets.

The fact of the matter is that this disease is always as real as it gets, even while I attempt to squash it down, to accept the humiliation it forces upon me with some modicum of dignity and, even as I make necessary lifestyle changes to accommodate it, sarcoidosis never takes a break from its desire to reek havoc on body or in my life. It never stops it’s quest to send me into madness. Sarcoidosis seeks to do me harm and regardless of my best efforts to ignore it, sarcoidosis isn’t going anywhere. Sarcoidosis is a reality and it is woven into the fabric of the story of my life…and it always will be.

Five Years Later…

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Today marks an unusual and rather personal anniversary for me but, I’m choosing to share it because any time I can raise awareness about my disease, I feel obligated to do so. Five years ago today I underwent an open lung surgery to find out what was going on with my breathing and to determine once and for all if the images of my lungs were cancer or sarcoidosis or something else. I spent four nights in the hospital. My first and so far, (knocking on wood), only hospitalization for this disease. The diagnosis was sarcoidosis.

There are four stages for pulmonary sarcoidosis. I am stage four. Staging in pulmonary sarcoidosis is not like cancer staging, it does not necessarily predict prognosis. Staging in pulmonary sarcoidosis only determines what is seen by the physician in radiography. Stage four does mean that my lungs are scarred. I do have something called pulmonary fibrosis. I will be short of breath for the rest of my life because of it. I use inhalers to help me cope when my breathing is particularly difficult.

My life has changed a lot in five years. I could say that this disease has been the worst thing that has ever happened to me but it’s not. Even though this disease has changed my life in ways beyond measure and ways I would never have wanted or foreseen, it has also made me realize something fundamental about the importance of living in gratitude. I appreciate my life now in an almost primal way.

Having sarcoidosis has taught me the value of a simple life. I’ve let go of my need to strive and I am so much happier for it. Despite the physical hardships of my life with sarcoidosis, there is an easy joy to every day living for me now, that I did not have before I got sick and, it comes from a core understanding that control is an illusion. Once you lose your health, it puts all other things in new light.

Since my initial diagnosis, we have found the sarcoidosis in other organs and I have been on and off and on low doses of chemotherapy. There is no known cause and no known cure for sarcoidosis and treatment is really only used when the disease begins to impact quality of life or organ function. It has done both in my case.

So, I mark this anniversary with a bittersweet feeling. I hate this disease with a passion but I am equally passionate about what it has taught me about the value of living in peace and love and for the understanding that this very moment is the only one that truly matters.

23 Strange New Habits…

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I’ve developed some new habits since my sarcoidosis diagnosis, maybe others with chronic illness have too….I don’t know. I do know these habits, for better or worse help me cope. Here they are, in no particular order:

  1. I put a blanket on my lap even when it is 80 degrees outside. I’m usually cold or at least chilled all the time now.
  2. I can’t be outside anymore without sunglasses, even on dark days. My eyes are now incredibly sensitive to light.
  3. I keep my house very clean. Not that I was a slob before my sarcoidosis, but now that I spend so much time at home, I find having a very orderly house gives me a feeling of control.
  4. I’ve become more of a loner. I’m still a people person but being alone a lot now, I’ve learned to really enjoy my own company. When I am alone, I don’t have to pretend I feel better than I do. There is an ease and relief now in being on my own.
  5. I read a lot more. I’ve always loved to read but before my diagnosis, I didn’t have a lot of time for it. Now that I don’t work, I find great comfort, good company and wonderful escape in reading.
  6. I developed a habit for writing. I’m shocked that I started this blog and share all my “dirty laundry” but, writing is a release and it does help keep my mind active and my feelings sorted out.
  7. I keep a daily gratitude list. I’ve always been a grateful person but there is something about losing your health that changes your outlook. You can either decide to appreciate life all the more, especially the little things or, you can feel tremendous self pity. I’d rather be grateful. I am purposely grateful now in a way I wasn’t before being diagnosed with sarcoidosis.
  8. I take a lot more photographs. I find having visual memories to look at of happy and beautiful things, especially on bad days, helps my mood. I also enjoy photography as a hobby. Having hobbies you can manage is really important when you’re chronically ill. It provides a continued sense of self which could otherwise be lost.
  9. I enjoy watching reruns of old Law and Order episodes. There’s something about the predictable structure of that show that brings me comfort.
  10. I have conversations with my dog. My husband thinks I am becoming a crazy dog lady but my dog is my best friend. She never judges me and is always ready to provide comfort or distraction.
  11. I spend more time on the internet now. I do this for a few reasons. One is my blog but, I also help administrate two sarcoidosis support groups online. I am also an admin on Facebook for an Old English Sheepdog group…surprise, surprise! I’ve actually met some truly fantastic people through the internet. I consider a few of them very good friends.
  12. I enjoy cooking now. Sometimes I have to use a stool because my legs get too weak to stand for long periods, especially at the end of the day, but I love being in the kitchen these days. It’s not just a means to an end,  cooking has become a joy….probably because I have time to put some effort into it since I no longer work. My husband likes this new habit!
  13. I experience anxiety before we travel for big trips. I never used to have this problem but, now when you take me out of the safety of my home and my routine, I never know what my body will do and that’s a little freaky. I used to love to travel too but now, it takes me a few days mentally just to prepare for it. The aftermath of a trip is also very hard on my body.
  14. I like routine now…a lot!
  15. I cry more easily than I used to and I HATE this. UGH! I was never much of a crier before. Now, I might just cry for no reason at all.
  16. I don’t judge things I don’t understand anymore. I realize now that I have sarcoidosis, and I am often misunderstood, that there are things I can’t know.
  17. I’ve become a morning person. I was never a morning person before my disease. I was much more a night owl. Now, mornings are when I have the most energy and can get the most done. Mornings have become my favorite part of the day because as the day goes on, my pain and fatigue catch up with me.
  18. I think less. My mind is not as active but this is probably a good thing because I also worry less.
  19. I don’t eat much anymore. While I do love cooking now,  I rarely have a big appetite and a lot of food has a weird metal taste to it. I would forget to eat entirely were it not for the fact that I have to feed my husband.
  20. I drink a lot more water. I used to be horrible at staying hydrated. Now, I always have a tumbler of ice water near by.
  21. I rub Vicks Vapor Rub on my legs when they ache. It helps take the knots out and eases some of the pain,
  22. I can no longer sleep curled up on my right side. Ever since my open lung surgery, my entire right rib cage is messed up and a lot of times I have to take melatonin in order to get a really good restful sleep.
  23. I don’t dwell on stupid stuff much anymore. I still have my moments but, mostly the stupid stuff that people say and do says more about them than it does about me and, I know this now in a way I didn’t before my sarcoidosis diagnosis.

Routine…Can’t Live With It…Can’t Live Without It

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Routine is not a matter of comfort for people with sarcoidosis. Routine is a matter of survival. Those of us with chronic disease depend on routine to manage everything from physical pain to body numbing fatigue to the constant emotional upheaval of our pain and fatigue. Routine allows us to maintain some sense of normalcy, some modicum of sanity.

It’s not always fun living a life of routine. It can be rote, repetitive and often mindless. Routines are mechanical things. They create structure and but they also lack spontaneity. Routines are both a friend and an enemy to those of us with sarcoidosis. They bring order to a world that is otherwise left chaotic in a body that won’t work properly. They also cage us in that world, forcing us to live within very limited parameters. Routines shrink our world to a manageable size but they also restrict us. They cut us off from so much else that goes on around us and sometimes they make us fearful of what lies outside of them.

When we step out of our routines the consequences can be unpredictable. Sometimes very little changes except perhaps a slight increase in fatigue. Fatigue is one thing we can always count on. No matter what we do, fatigue is always present. Other times stepping outside our routine can bring on something as severe as a flare in our disease symptoms, sometimes bad enough for hospitalization. The route our disease goes, when we change our schedule is anyone’s guess.

Having routine a for those of us with sarcoidosis, or any other chronic difficult health issue, is necessary. It is how we function at our best in most situations. Learning to create these boundaries is one of the first coping skills we learn once we are saddled with illness. Routines bring us a feeling of security, of control, when everything else feels like wildly unpredictable.

Sometimes for our own sanity, we have to try to reach beyond those boundaries though. Part of the balance of living with a disease like sarcoidosis, is learning when to push and when not to push. Finding this balance is a constant challenge but if we stay too stuck in routine, we can forget that there is a big beautiful world beyond the lines we have created for ourselves and sometimes making an effort to be part of that world is as important to our overall health as routines are. There’s always a price to be paid for stepping outside of routines but sometimes we have to weigh the cost against the benefit of taking a chance and sometimes the benefit outweighs the cost. Being stuck in routines is tedious and, while they are necessary for our physical health, they sometimes impede our mental health. Sometimes, despite the risk, it is just as important to overcome the fears we have of leaving our routine to remember that we are not defined by them or by our disease.

The Beast…The Ogre…The Monster!

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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.