AH HA!

 

I’m frank about my sarcoidosis, that sometimes it’s tough to live with, that sometimes I’m scared or in pain or uncertain and afraid. When I started my blog, I told myself to be honest, to share the unvarnished truth, so that’s what I try to do. That being said, sarcoidosis had taught me one of the most important lessons of my entire life and this lesson helps me cope perhaps more than any medical treatment I receive.

Sarcoidosis has taught me that suffering is a choice. Physical and emotional pain are not always a choice. They are part of life. Uncertainty and grief and loss and change are also all part of life. They can be breathtaking moments of pause. They sometimes crush our spirit for a time. These life altering emotions can also be motivation to make much needed changes. The complex emotional journey we are on in life, with or without chronic disease, gives us choices, not necessarily in how we feel but in how we respond to what we feel.

It’s one thing to identify a complicated feeling when you live with a chronic illness or when you are dealing with any upsetting situation in your life. Identifying loss, being aware of your powerlessness and knowing there are certain things you cannot change, things that are hard to accept, is an important step in letting go of the negativity that comes with these realizations. The danger of it though, is getting stuck in that negativity, wallowing in it and allowing it to define you. This is when you suffer. No doubt it’s a pitfall anyone of us can fall into. The key, at least for me, is to remain vigilant of its power to destroy me and to steal myself against its menacing magnetic pull. In my case, because of all the life changes I’ve been through because of my sarcoidosis and all the ways it has changed my life and changed me, I have to wake up every day and make a conscious choice that I won’t be dragged into that particular abyss.

I am reminded of the old worn out expression that “misery loves company.” Misery doesn’t just love company, misery thrives in sorrow and despair. Misery seeks out weakness and tries to draw it in. If you go there, it can swallow you whole. You could be lost to it. Misery is suffering and suffering is miserable. When I was first diagnosed with sarcoidosis, I was scared. I had no idea what direction it would go, what treatment for it would or wouldn’t do, what I would lose and what it would mean for the rest of my life. I could every easily have and, with some justification become, dejected and depressed and despondent. I’m not talking about appropriate grieving here, I’m talking about all consuming and unyielding despair…misery…into the abyss!

The fact is, my life has changed. I haven’t worked for nearly ten years, a career lost. Friends have withered away, no longer patient with my slower step. My pace is a beat or two off the rest of the functioning world now. My presence in the world feels somehow diminished, sometimes. I find significant comfort being home and, routine now more than ever, helps me feel safe… even before COVID. I am probably, in some ways, one of the most boring people I know. Much of what I do now revolves around what my body and brain can and cannot handle. It can be an emotionally taxing way to live. The redundancy sometimes monotonous. When people ask me what’s new, I often fumble for an answer. Yet, I need this tedious, unvarying, soporific pace to live the best life that I can. The irony in this is not lost on me. Seriously, how do you live your best life when you are living what would be perceived by most as the humdrum life? This is something only another person living in constant pain who deals with the stumbling blocks of life with a chronic illness can truly understand.

I could very easily wallow in all that I have lost, in what my life has become. I used to define myself by my work. I used to be so proud of my accomplishments. I miss my paycheck and the financial contribution I was making to our household. I used to think I had a lot of friends simply because I had lot more people in my life. I felt a part of the world that I am now somewhat separate from. I never doubted my body. I trusted that it would always carry me wherever I wanted to go. I had a swagger and a confidence about myself that I no longer have. I had a sense of freedom that has been lost to me. I am in some sort of physical discomfort or pain all the time now. Every breath feels a little like I am swallowing fire and every movement comes with a stab or a throb or an ache. My body is tender and sore all the time. Sometimes I blood pressure falls so low, I pass out. Some days, I do wonder if it will get me from point A to point  B. I have watched people drift out of my orbit as my world shrinks and my once self described “value” fades. Sarcoidosis had taken plenty from me. I could certainly be resentful but, I’m not.

I’m not resentful because sarcoidosis has also given me things I would not otherwise have. I may have lost my confidence but, I have gained a sense of humility and, with that comes a profound ability to see the world with clearer eyes. This includes a better understanding that the only thing I control is how I respond to my emotions. I can get angry but I can also let it go. I can be sad, have a good cry and, set that sorrow free. I am no longer as ego driven as I was. I can’t fix things that aren’t meant to be fixed. I am better able to accept what I cannot change because I understand I am not in control of what I don’t have control over. I’ve finally figured out that life is full of pain, physical and emotional, for all of us, but I decide if that pain is suffering or if that pain can be put to good use. Pain, physical and emotional, helps me change. It helps me grow spiritually and emotionally…if I let it. 

Living as I do today, with chronic illness in the forefront of all that I’ve become, has made me much more aware that what I choose to think about is what defines me. I made a conscious decision early on my illness, to do what I guess is often my reaction to difficult circumstances. I made a decision to fight. I hadn’t realized though, that in this case, fighting would bring with it such a unique change. I hadn’t realized early on, that a huge part of my fight to live as well as I can, in this altered state, would be gratitude for what is instead of a focus on what has been lost. I didn’t know in the beginning of my sarcoidosis journey that suffering was a choice. I thought pain and suffering were the same thing. They aren’t. Pain is inevitable in life. We all face it, no matter our personal circumstances. Suffering is actually a choice. Suffering takes us to the edge of the abyss and if we all allow it, will push us in, falling into the deep darkness.

What I know now is that I will probably feel some sort of pain every day for the rest of my life…both physical and emotional. Living through the age of COVID, taught me that my life can continue to shrink. The future is unknown but, I can harness that uncertainty to my advantage. It gives me the power to live in the moment instead of fretting about the future…easier said than done but doable! Every day I wake up and make a very deliberate choice to focus on the comfort of my new little world, to accept that life has changed, to know that with change comes opportunity, to find new ways to define my purpose, to focus my energy where it truly counts in my life and in the lives of those I love. Sarcoidosis can take a lot of things from me but it can’t take my ability or desire to love or to hope or to have faith. Sarcoidosis cannot take my will to live and while it might try to drag me into misery, it cannot keep me there because I won’t let it. I understand fundamentally and to my core that unhappiness is mine to overcome and suffering is not absolute. Misery might love company but it is not the kind of company I want to keep.

I’m Back…

I haven’t posted a thing since just before COVID-19 smashed into all our lives and changed everything for a lot of us…forever. I’m not sure what made me stop writing. I think I got distracted by trying to stay alive first and then, like so many of us, especially those with chronic illness, my world shrank even more as I learned yet again, how little those of us with chronic illness can actually trust the outside world. Our need for caution was put on full display in 2020, everything we have ever known about how disposable we are to the healthy and the well came into sharp focus during the worst of the pandemic. People refusing to wear masks, refusing to social distance, refusing to acknowledge there was even a virus out there killing people. The way some public figures spoke of the ill and the elderly…as if we should be sacrificed so they could go on living “normally.”

Even though I am now fully vaccinated and boostered and still wearing my mask, trying to figure out what my new normal is three years into COVID-19, I find that I am having some difficulty fully processing my sorrow and, sometimes my rage, with those who so easily dismissed us. Maybe that’s why I couldn’t write again until now. Maybe, I needed that much time to grieve the hate others showered down on those of us who have been most vulnerable to COVID’s deadly impact, those of us who had the audacity to inconvenience the healthy and the well, by asking them to please keep some distance and wear a mask…at the very least.

Like so many of us, now living in a new age, nearing the COVID “endemic”…I am yet to figure out exactly what my life is supposed to look like. There are still things I won’t do. I wont’ get on a plane. I won’t eat in crowded restaurants. I won’t go into crowded theaters. My world remains smaller than it was before the virus, not as small as it was in 2020 or since getting vaccinated but smaller to be sure. This makes me sad, painfully so, because three years into this thing and for some of us, some things feel different, somewhat more normal but not like they are for those who are not medically vulnerable. I find this reality exhausting, the need for continued vigilance, vigilance the healthy and the well no longer feel and take for granted that they no longer have to feel, some who never felt it at all.

Anyway, I am back now and will again write about life with sarcoidosis but probably also about life with sarcoidosis in the age of COVID…it has changed me. I am sure I am not the only one. I’m still processing. I am sure I am not the only one. Maybe as I process out loud, here in my blog, it will help someone else. I hope it does, otherwise the exercise will be one of utter self indulgence, which was never my intent when starting this blog in the first place, several years ago. My desire has always been to share my personal experience in hopes it might help others with sarcoidosis and other complicated misunderstood health challenges feel less alone.

Unsolicited Advice

I’d like to take a moment to give some much needed advice to the family and friends of someone with a chronic health issue. I know, it’s rude to give advice that hasn’t been asked for but, it seems appropriate to give regardless, as I am one of those people who lives with a chronic illness so the advice I am about to give is, well, accurate!

Please, whatever you do, don’t talk down to us. Those of us with chronic illness aren’t to be pitied. We aren’t less than you. We just happen to have a health challenge you don’t have. Lucky you! A common mistake that “well” people make, perhaps without even realizing it, is that the tone of their voice changes when they speak to us. Poor put upon us! Don’t do this. I beg you. We are no more put upon than anyone else. It’s just that our challenges revolve around health. Everyone faces some challenges in life!

Whatever you do, don’t use our disease as an excuse for your behavior. This is a big one! Please pay attention to this one! You don’t get to decide when we are “too taxed” for company or conversation. If you don’t want to continue a conversation or come for a visit that’s fine. End conversations with us as you would with anyone else. Don’t blame the need to get going on our disease. You wouldn’t do this for another “well” person. We know what we can tolerate and what we can’t tolerate and, we know how to let you know. When you blame our disease for your desire to be elsewhere it hurts us. We know all conversation has a natural beginning and end. We aren’t stupid, we are sick. When you say you have to go so that we don’t “overdo it”, you are making a judgement about us that you actually have no right to make. Your intention might be pure but, all we hear is “I don’t want to talk to a sick person anymore” or “how can I get out of feeling uncomfortable around this person.”

While many of us try very hard not to allow our illness to define us, unfortunately, it does define our boundaries. It does define what we can and cannot handle and as “sick” people these boundaries have shifted. We are in pain. We are weaker. We fatigue easily. These things limit us but, they also change constantly in the extent to which they limit us. Like everyone else, we have good days and bad, ours just revolve around our health. Only we know from day to day what these limits will mean and sometimes they are unpredictable, even to us.

When you ask us how we are and we say that we feel “good”, please do not assume this means we are healed. It’s called chronic disease for a reason. When we say we feel “good”, it means one of two things: We are having a good day or, we are lying. We do sometimes just say that we feel okay because it is easier to fake it for ourselves and for you. We know how boring it can be to blather on about illness. It bores us, too. So, if you ask us how we feel, it’s not a passing question like, “How ya doing?” If you ask us how we feel, only ask if you really want to talk about it. Otherwise you could get an answer that might confuse you or an answer you really weren’t looking to get.

Do not treat us like we are breakable. Do not look at us with sad eyes. Remember, that while our bodies might be altered from disease, our brains still work. We can feel your discomfort about our disease and we notice what your eyes tell us. Our disease is our problem, not yours. You can have feelings about our illness because you love and care about us, you can be concerned for us but, we would rather you talk to us about these feelings and concerns than treat us with kid gloves and not say anything at all.

When we are unable to do something or cannot accept an invitation, especially if it involves extensive travel, don’t feel rejected by us and don’t fall into the trap of believing that we are using our disease as an excuse to stay away. It’s true that our resources for daily living are limited. It’s also true that it can be very hard for us to figure out a proper balance for how best to use these resources. We do not want to disappoint you or make you feel rejected. Our worlds are smaller now.  Sometimes we will put what little resources we have into making our own smaller worlds better for us before we will make bolder attempts to push those resources and do things we know will be harder on us. Reality dictates that we make tough calls about the need to say “no.” We understand that you might perceive these decisions as selfish. They aren’t. They are about self preservation and, you can’t fault anyone for taking steps to protect themselves, can you?

Don’t throw empty gestures at us to make yourself feel better. If you offer help, please be prepared to provide it. We are not good at asking for or receiving help. We may be sick but we still have pride. We still want to be as independent as possible. So, if your intentions are not legit, don’t bother to verbalize them. We often feel we are a big enough burden as it is, that if help is offered but not given, it feels incredibly demoralizing to us.

So there you have it, advice you didn’t ask for but, advice none the less, I hope helps you better understand your family and friends who live with chronic illness. Advice I hope you can appreciate and put into practice for improved relationships with those of us who are altered by the fog, pain and uncertainly of incurable disease.

Dear Doctor…

Please listen to me. Look at my lab results, check my scans, review my tests but, please whatever else you do, just listen to me. Listen to me without judgment. Listen to me and help me figure out what is wrong with me. This is why I am here. I need your expertise, I appreciate your expertise but, I also know how complex the human body is. I know this because I live with a rare and often misunderstood disease called sarcoidosis. I know this because I might very well know more about my disease than you do and, I certainly know more about my body than you do. We must work as partners, you and I. If we don’t,  you cannot help me. So, please listen to me.

You have pieces of the puzzle because you know how to interpret all those tests you ran on me. You have pieces of the puzzle because you spent years in medical school and you know things I don’t. I understand this. I respect this. This is why I am here. Remember though, that I know things too. I am the one who lives inside my body. I know what is normal for me and what isn’t and, when I tell you something isn’t normal, despite whatever your tests might show, I need you to listen to me. I am not wrong. I am not making it up.

Doctor, please don’t be threatened that I am knowledgable about my disease and my own body. Please don’t get defensive if I ask you pointed questions. I want to understand what is happening to me. I deserve to understand what is happening to me. Maybe you don’t know. If you don’t, I promise I won’t think less of your skills as a physician if you just say so. It would actually be a refreshing change from being utterly dismissed as a liar. I’ve lived with a rare disease that does strange things to me long enough to know how intricate the human body can be and that at times it is a vexing and imperfect instrument. It seems common sense that tests results are as much to rule something out as to rule it in. They may not always match what I am saying. So, please listen to me.

Exam me Doctor. Don’t be afraid to touch me or look at my body if that will help you better understand why your test results don’t correspond with my pain. My pain is real, Doctor, I promise you that. I need for us to work together to find out why. How can we address my pain if we do not understand the cause? I am not looking for a quick fix, Doctor. I just want the quality of my life to improve. Doctor, do you think that is unreasonable? Doctor, I need you to engage me as an equal, to let go of your arrogance and self proclaimed righteousness that you are superior to me. You are not.

Doctor, I understand that when I tell you this needs to be a partnership, that I must also do my part. I must be self aware. I must be willing to listen, too. Doctor, I don’t want a stopgap measure to address my pain. I don’t want a makeshift solution. I do not want to spend the rest of my life chasing pain relief. I want to know the cause of my pain and I will make lifestyle changes and I will work hard to do what is necessary to address my pain if you will only help me better understand it and work with me to find the best least invasive way to address it. Let’s not go to extremes just so you can get paid or get me out of your office.

I want the very best for myself, just as you would if you were the patient. Doctor, please try to understand that. Not every patient that comes to see you is one size fits all. Not every patient who comes to see you is a drug seeker or a liar or an attention seeker. Please don’t be cynical, Doctor. I am here because I need help. Please, listen to me. Let’s work together to improve the quality of my life. After all, isn’t that why you went to med school in the first place? To help people? The best way to help someone in pain Doctor, is to listen, listen when an open mind.

I’ve said my piece. It needed to be said.  Now all I can do is hope, Doctor, that you will listen.

Emotional Gymnastics And Other Games We Must Play

Sometimes I wonder…”Am I just fooling myself?” I mean, I try to be a positive person despite my sarcoidosis, this chronic illness that so changed my life. I try to focus on what I have instead of what I lost. I do know how important attitude and outlook are when it comes to managing your body! The brain and the body are connected. If I ever doubted this or once didn’t give it much thought, I am wholly aware of it now. I’ve also become aware of the mental games I must play to stay ahead of a sinking, soul sucking sorrow that my body has betrayed me.

Last week, I had to go for an MRI. I’ve had them before. I knew what to expect and I’d never had a problem getting in that stupid metal tube before. This time, right after I laid down on that cold hard table and the tech put that cage around my neck…YIKES! I’ve never had a panic attack before so I wasn’t sure if this was what was happening but I could not breath, I started to sweat, I wanted to cry and run away at the same time and, I thought I might die. The tech realized quickly what was going on, took the cage off my neck, had me sit up and take deep breaths. She was very kind about it. She distracted me by asking why I was there and what was going on. During our conversation, she confessed that she too has a chronic illness. She shared some of her awful experiences with the medical community. Only someone else with a chronic illness can understand how this would put me at ease.

Something she said has stayed with me. She talked about how ever since she got sick, weird things, things she doesn’t expect or never experienced before now frighten her. She mentioned a new fear of heights. I thought about that a lot after I got comfortable enough to finally get in the tube and have my imaging done. Apparently I am now claustrophobic. Thank you sarcoidosis. Her words ring so true though, that while I know I am brave in new ways, ways other people could not be, I also now feel like a chicken much of the time, unsure and often ill at ease. It’s a feeling I have to constantly fight but has become so second nature that I don’t even know the battle is raging until, well…I have to go for an MRI! It’s a quiet state of panic until something tiggers it.

Here’s the other thing that happened during my MRI, my husband had to come in the room and hold my hand. Ugh, talk about embarrassing. Now, my husband is a wonderful man. He would never say or do anything to discourage me or further embarrass me. He came in the room, put that handsome big smile on his face that still makes my heart melt and said…”Come on, let’s do this thing.” I took a few more deep breaths, the tech said she’d keep the cage off my neck if I promised to keep still, my husband grabbed my hand and held on for dear life. I survived the MRI!

On the way home from the imaging, I found myself silently shaken and a feeling of complete inadequacy came over me. I hate how depend I feel sometimes now. I used to be so strong, could face every fear and jump into life with both feet. Not anymore. My brother once told me that he was shocked that I’m not afraid of anything. Well Bro…I am now. Some people say I’m brave because I make living in constant pain and uncertainly look easy. Sometimes I feel like a phony, like that smile I plaster on my face just thinly veils an underlying misery.

It occurs to me that the amount of emotional gymnastics that I have to play just to try to be happy, let alone have any peace, is astounding. It’s a choice to try to be happy and all the twisting and contorting I put my mind through to be grateful certainly feels like exercise. It’s hard work but it is worth it. No amount of mental gaming playing is ever going to change the fact that I hate feeling weak and dependent though. Yet, in order to shake this feeling of inadequacy, I know that I must now bend my mind around something other than my sorrow. I must push away the feeling that just because I needed my husband, I am not enough. I must focus on the fact that I have such wonderful support in my life, that he was there when I needed him and that mentally, I did overcome my new found claustrophobia. I am not deficient because I needed help. Everyone needs help sometimes. Or, maybe I am deficient but, you know what…who isn’t? However I look at it, I know that I need to accept that getting help the you need is more a sign of strength than it is of weakness.

So, “Am I fooling myself?” Maybe. Sometimes. Does this mean that I’m a phony? I don’t think so. It makes me just like anyone else who is looking for peace of mind no matter their circumstances. I don’t pretend living with sarcoidosis is easy, I never have. Learning to tumble through all the feelings that come with life with an unpredictable, possibly life limiting, illness is probably the only way for me find any happiness at all. I will allow myself those breath stopping, gut wrenching moments of reality from time to time. Life IS harder when you’re constantly sick. I will also continue to zig zag, dodge, jump and twist my way toward acceptance. I will play whatever emotional games I need to play in order to let go of hopeless fears and unproductive self loathing. I didn’t ask to be sick but, it is up to me to figure how to cope with it now! And, there’s nothing fake or phony about smiling sometimes when you’d rather cry or laughing when you’re scared. I’m not an imposter. I’m human.

Not Normal…You Say?

Sitting in the waiting room waiting to see yet another new doctor, this time a pain management specialist, you heard me…that’s right…my sarcoidosis has led me to a freaking pain management specialist, but I digress, I’m trying to fill out the new patient forms and I don’t have even the vaguest clue how to fill out those stupid pain scale questions. You know the ones…”What’s your pain on a scale of one to ten right now”, “what’s your pain level when you wake up in the morning”, “what’s your pain level when you do this or that thing”… blah, blah, blah. I have utterly no self awareness regarding my pain. Why? BECAUSE I AM IN PAIN ALL THE TIME! It’s just become part of me, no different than a limb or a finger nail or a tuft of hair.

I let out a heavy sigh. My husband, who usually attends my medical appointments for the extra moral support, asked what was wrong. I told him that I wasn’t sure how to fill out the pain scale questions. I said and I quote…”Pain is so normal for me.” He said, in the most loving way possible, “I am sitting here right now and I am not in pain. Pain is not normal.” Not normal? Come again? What did you say? Maybe I heard that wrong!

I found it both reassuring and slightly alarming to hear that pain is not normal. I found it reassuring because it means seeing a pain management doctor is probably the right specialist at this stage of my disease process. I found it alarming because I realized at that moment, that I have been in some kind of pain so long that I don’t have a “new normal”…I have a “this isn’t normal at all” thing going on. But, I’ve been, at the very least, uncomfortable in my skin so long that for me burning sensations, sensitivity to touch and feeling like my bones are about to break are all routine. How horribly sad is that?! It’s awful. No one should have to live like this and yet…

Doctors sometimes say stupid things about sarcoidosis. At this point, I’m sure I’ve heard it all. One of the worst things I have heard doctors say is that sarcoidosis doesn’t cause pain.  Cover your ears if you don’t want to hear me cuss because, that right there is simply bullshit. When you can’t breath and you gasp for every breath, guess what? That’s painful. When, because you have sarcodiosis, you’ve also developed something called small fiber neuropathy, guess what? That’s painful. When you had to be diagnosed with sarcoidosis through an open lung biopsy and now your rib cage is caved in, as is the case for me, guess what? That’s painful. When you frequently lose your balance and fall a lot because you have sarcoidosis, guess what? That’s painful. When your sarcoidosis gives you arthritis, guess what? THAT IS PAINFUL! So, doctors who tell you sarcoidosis isn’t painful are, in a word, idiots.

Earlier this year, my right rib cage caved in. It’s concave. It’s not supposed to be concave. My entire right side is sensitive to touch, burns and my ribs often feel like they are about to break. This is most certainly not normal and it hurts. It’s exhausting to hurt all the time. My pulmonoloigst said this happened because I lost weight and blew me off. My primary doctor sent me for a bunch of tests because he was sure it was my gall bladder. How your gall bladder makes your rib cage cave in is beyond me but, there you have it…typical. Doctors blow you off or take you down a rabbit hole you know darn well you don’t belong in. I even tried to check in with the surgeon who did my open lung biopsy because that’s the area where it hurts the most so that made the most sense to me…He refused to see me.

As is so often the case with sarcoidosis, because I am sure this rib issue is somehow related to my sarcoidosis, I took to the internet to diagnose myself and, I spoke with other sarcoidosis patients. We learn more from each other than we do from most of our medical professionals. I’ve also gotten good enough with internet self diagnosis, that I don’t waste time on sites that aren’t reputable or have valuable information and, I don’t get freaked out by everything I read. I’ve probably read more research papers about sarcoidosis than most MDs. Sure enough, I found a diagnosis that fits and sure enough it is related to my sarcoidosis. I have intercostal neuralgia. I’m sure of it and it is related to my sarcoidosis because it is a complication from my open lung biopsy to diagnose my sarcoidosis. I took this diagnosis to my primary care doctor and he thought it could be that but then sent me to a surgeon to see about having my gall bladder out…there I was stuck in that stupid rabbit hole.

Fortunately for me, and maybe because I was due for a small miracle, this surgeon didn’t think my gall bladder was the problem and, after listening to everything I had to say AND doing a thorough exam of my rib cage, she sent me to a pain management doctor. She truly believes I am right about my diagnosis of intercostal neuralgia. Hala-freaking-lua! So, there I was in the waiting room waiting to see my new pain management doctor for the first time, gut punched with the reality that pain is NOT NORMAL. I know…I’m shouting a lot…sorry…I’m just a little worked up. I’m due to have an MRI of my thoracic area this week and I will meet again with the pain doctor after that to discuss next steps in addressing what’s causing my pain but even he agreed that it’s likely intercostal neuralgia. BINGO!

Sometimes it really helps me to ask my husband what’s normal and what’s not. It’s so easy to settle into my pain, to accept it as just another part of me, to not realize that I should and I deserve to seek comfort. I suspect pain will always be part of my life but doing all that I can to try to minimize it needs to be just as big a part of my life. I do not have to, nor should I accept a “this isn’t normal at all” kind of life. It’s a constant battle when you live with chronic illness. You battle the medical community to be heard, you battle constant fatigue, you battle your own emotions and you battle that sneaking feeling that “not normal at all” IS normal. I’m here to tell you that it’s not and while I don’t know how successful seeing a pain management doctor will be, I know one thing is for sure…I will keep seeking to find a better definition for normal for myself.

I Never Throw The First Punch

Once a upon a time in junior high school, I was walking down the hall, minding my own business, on my way to my shiny yellow locker when suddenly three girls were in front of me. They blocked my passage. One of them said, “You’re new here and we don’t like you.” My heart started pounding so loud, I thought the gathering crowd could hear it. My throat got a raspy kind of dry and my lips curled from a desperate thirst. My palms were clammy. I said, “I’m sorry to hear that. Could you excuse me though, I’m just trying to get to my locker.” The girls stepped forward further crowding my personal space and refused to let me pass. Soon, I was cornered and felt very much like a trapped animal, backed up against that bright yellow locker I so longed just to get open, get my books and get on to my next class. I could feel my cheeks redden and sweat began to drip, drip, drip down my back. The throng around us grew and everyone just watched as these girls menaced me. They were bullies. They were testing me to see if they could control me. I felt confused and unfairly picked on. I didn’t know these girls. It was my third day of school in a new district. I didn’t really know anyone yet.

Things went from bad to worse as they continued to call me names, standing at an uncomfortably close distance. I could smell their sour breath as they railed at me. I remained quiet. I looked down. I tried not to engage. I just wanted to get out of there and I wasn’t sure how I could manage it. They had me against the wall and I could feel the cold steal of that yellow locker on my back. I didn’t care so much that other people were watching, except that it would have been nice if just one of them stepped in to help but no one did. I hadn’t thought much about how the crowd would respond to the way I reacted to these girls. I only wanted the harassment to stop and I just wanted to be safe. I bit my lip so that I would not start crying. I’m not really a crier but the stress of this most unwarranted attack was starting to get the better of me. I could feel myself shrinking. I hated that feeling more than I hated these girls who were publicly humiliating me.

I wondered how things could get worse or even how I would get myself out of this situation. I didn’t have to wait long. One of the girls spit at my feet and another one slapped me hard across the face with an open fist. I really didn’t see it coming and it stung as sharply as a bee sting and I’m allergic to bees. For just a split second, everything froze. Then, and I had to have this part retold to me by the myriad of observers because I could not remember it, I apparently dropped my books and started throwing punches. I only have a very vague memory of a lot of noise. Shouting mostly, I think it must have been the crowd.

Later in the principal’s office, I was informed that girl who hit me, her nose was broken. I was heartsick. I didn’t think I was a fighter. I’m not a fighter. My knuckles were raw and my head ached from getting my hair pulled…other than that, not a scratch on me. The principle asked me several questions about what had happened and I told him what I remembered, that I’d been unexpectedly cornered and then assailed. He handed down his punishment. Detention for a week for me and suspension for the girl who started the fight. She and her “mean girl” friends, apparently had a history of starting fights. I was not singled out for any other reason than being new to the school. The principle said he didn’t want to give me detention but he had to. I understood and took my punishment without complaint.

When I got home that night, my mother was beyond furious with me. My step father was proud. He asked me how many times I punched the other girl. I told him that I had no idea. He insisted that I give him a number. I told him five or six. He gave me six dollars….a dollar for every punch. I should have told him fifty! He told me if I had started the fight, then I would have been in trouble but he was proud of me for defending myself and told me, in time my mother would be too. I’m not sure she ever was and I was grounded for a month.

I often think about this story and others like it in my life. Just yesterday I was walking my dog. She was doing what dogs do on walks…sniffing and peeing on things. We were at the yard of a well known grumpy old man in our neighborhood. We were down by the curb, in the street, exactly where you’d expect someone to be who is walking their dog. She stopped to sniff a bush when the grumpy old man came out of his house yelling, “Get that filthy animal off my lawn.” I was shocked but, given this man’s reputation, not surprised. I said, ” Sorry…She’s just sniffing a bush. We’ll be on our way.” He said, “What are you stupid or something? I told you to get that beast the #@%#  off my lawn.” Before I even realized it, I said “Calm down and don’t be such an #$%@&*$#.”  The man was stunned. I don’t think he is used to anyone talking back to him, let alone a woman. I do live in the “Deep South” and this man is not only a grump, he is also a typical Southern “good ‘ld boy”, used to women being seen but not heard. He didn’t say another word and my dog and I went off to finish our walk.

That’s how I am though, I guess. I won’t start the fight but apparently if you come at me, I will finish it and I will give it my best shot to win. I’m a peaceful person until I am provoked but apparently, I am not a pacifist. Sometimes, I wish I could respond differently to mean people. My husband often turns the other check. He will smile and wave at people who are unnecessarily rude. He would have smiled at that grumpy old man and probably just waved at him had he been there. I’ve observed him enough to see that this is equally disarming as surprising a bully by fighting back. Sometimes, I wish I was more like that but I’m not. I never throw the first punch but it’s in my nature to defend myself…vigorously.

As I think about this quality as it relates to having chronic sarcoidosis, maybe it’s not a bad thing. Sarcoidosis invaded my life, much like those mean girls, out of the blue and for no good reason. It cornered me and it scared me, just like they did. It cusses at me, just like that grumpy old man. Sarcoidosis wants me to be miserable, just like bullies do. If I am miserable then the disease has the upper hand. I become weakened in misery. If I am miserable, I give my sarcoidosis ammunition to beat me. Sarcoidosis is a menace of a disease. It’s wildly unpredictable. You don’t know what is going to happen next when you’re in the throes of it. Sarcoidosis punched me first, but as I look at how I have responded since my diagnosis, I have been fighting back and I am giving it everything I’ve got. I might not win this war but I intend to put up a hell of a fight!

I never gave much thought to what I would do if I ever got sick, really sick. I’m not sure anyone does until it actually happens to them. I’ve learned that my fight instinct kicked in. Even though this instinct has not always served me well, has sometimes gotten me detention or disrupted my serenity on a walk with my dog, I now see this instinct in a whole new light. I am actually grateful for it because it is saving my life or at least prolonging it.

A Mean Misunderstood Mystery Of A Malady!

What exactly is sarcoidosis?

Medically speaking, sarcoidosis is a systematic inflammatory disease for which there is no known cause and no known cure.

Here’s what sarcoidosis really is…

Sarcoidosis is the immune system throwing a temper tantrum. It’s rude, kicking and screaming through your body with unbelievably annoying force. It wants its way even if what it wants isn’t good for it or the rest of you. It is the immune system having a massive outburst. It stubbornly acts in defiance of good behavior.

Sarcoidosis is a mystery wrapped in a puzzle. It is a medical conundrum that doesn’t seem all that interesting to the research community to solve because even though sarcoidosis is rare, it is not a gem. Solving the sarcoidosis riddle won’t bring in the big bucks so, the joke remains on those of us who have the disease and, the punchline isn’t exactly hilarious when being the butt of a joke involves the quality of your life.

Sarcoidosis is an immune system “on steroids”. The funny thing here is that while people use the expression, “on steroids”, to communicate that something is amped up, that it is bigger, faster and stronger than the norm, sarcoidosis is a disease that is both this and sometimes literally on steroids. The irony in that is pretty rich and that is how you tell a real sarcoidosis joke!

Sarcoidosis is the schoolyard bully of inflammatory disease. The immune system is set off for no good reason and picks on whatever organ it wants. It enjoys a good brawl. It is mean. It badgers and weakens the body without regard for the consequences. It is intimidating, as it laughingly pummels the dignity right out of you, stealing your health and sense of well-being.

Sarcoidosis is the immune system exploding like a terrorist bomb inside your body. It is sneaky. It comes out of nowhere. The intelligence on it is often missed or understood too late to stop the attack. It is incredibly scary and it leaves you on edge wondering when and where the next attack will occur. Your feeling of safety and security gone forever.

Sarcoidosis is a copycat. It mimics other disease behaviors, like lupus, cancer and MS to name a few. It confounds the medical community with its wanna be lab results and imaging. Because sarcoidosis is such a good impersonator, it can only be properly diagnosed by exclusion and a biopsy. It is a master of disguise, a very skilled impressionist. Its trickery and illusion, a constant head scratching confusing manifestation of peculiar symptoms. It is a mean misunderstood mystery of a malady.

A Student Of Life

When I meet new people I usually get asked two questions…”Do you have children?” This is a pretty standard question I think that most women get asked. It’s an uncomfortable question to answer when the answer is “no.” Often, people don’t know what to say after that so the conversation drifts off. I guess all women are supposed to have children, even if for the sole purpose of having something to talk about.

The other question that comes up is, “Do you work?” This is another problem question for me because again the answer is “no.” So, no kids and no work. What does my life consist of then, one begins to wonder. I can tell they wonder this by the look on their face, all scrunched up with a crease between their brow. It is obviously perplexing to people that I am childless and unemployed and it is equality uncomfortable for me to give these answers, simply because I know what the response will be.

It would seem that many people define themselves through parenthood and through their work. I can’t speak to the parenthood part, but I know that I used to define myself through my career, so I can see to some extent, the compulsion to define ourselves by what we do. Now that I don’t “do” anything, explaining myself to others has become a bit of a challenge and I often find myself needlessly embarrassed.

This happened today when we met our new neighbors. I was asked first if I had children. “No.” A quite lull ensued and then I was asked what I do for a living and when I said, “I don’t work” another lull, this time longer. I felt the need to fill the uncomfortable silence so I told complete strangers about having sarcoidosis and becoming a blogger. Telling people you just met that you don’t work because you have a rare and chronic disease doesn’t go over well either because in fairness, how exactly are you supposed to respond to that? So, the conundrum continues.

Ironically, having this disease has actually taught me a valuable but, hardly known, little secret. We are more than what we do or who we raise. We are more than parents and we are more than our careers. I can’t tell you how I know this now, I just do. I suspect it’s because I have actually had what once defined me striped away and while I struggle a bit to accept my new identity, I realize that I only struggle because of the social norms we live by. Life is wide up to us. We can be anything and we are all many things.

I happen to be a social worker/healthcare administrator in early retirement because of an unpredictable and unwelcome chronic illness. I am also an awesome wife in a successfully blissful marriage of nearly twenty years. I am a darn good homemaker. I am a blogger and an administrator for two online sarcoidosis support groups. I am an encourager. I am the mother of two adorable sheepdogs. I am a very good and loyal friend to those who have been that to me and I am a daughter and an aunt who loves her nieces and nephews fiercely even when I don’t get to spend much time with them. I am a sister and although sometimes an absent one, I adore my siblings. I am a good neighbor and I am a nice person…most of the time. I am a jewelry maker. I am a vegan who also happens to be an excellent cook. I am a person who looks for gratitude in everyday life. I am someone who appreciates simple things. I am a tennis player. I am a biker. I am a problem solver and I have learned how to make the best of the hand I have been dealt.

Some might call me a “survivor” but I don’t agree. I am not a “survivor”. I am a thriver. I am learning to embrace an imperfect quest for peace and happiness. I am a student of life and I hope to receive high marks when the journey is over. So, the next time someone asks what I do, I think I’ll just say that I’m a person who is just trying to live a good life.

The Delicate Art Of Balance

The delicate art of balance is something that I really stink at. I have always been an all or nothing person, who not only expects to do whatever I do perfectly, but I expect to do it perfectly the first time I try it.

A fault…I know.

Having a disease like sarcoidosis is difficult for anyone but when you have this particular fault, it is at first devastating and then a challenge. It is very difficult to accept that you can’t do what you could once do and that you once did it with ease. It’s overwhelming to know that simple chores like getting laundry done, going grocery shopping and cleaning the house are now major tasks worthy of celebration for their completion.

I took for granted that I was an all or nothing person and once this served me well. It doesn’t now. Instead, this attitude actually gets in my way. It brings me down, fills me with guilt, shame, frustration and anger. I am no longer good at a lot of things. I am okay at best.

Gone are the days when I could juggle multiple tasks. I have to do one thing now and see it through to its completion before I move on to the next. I also have to think every job through before I start it. I have to gauge if I will have enough energy to complete it. Sometimes I don’t time things very well and I have to stop in the middle of a task and rest which is utterly annoying.

I’ve spent a fair amount of time being frustrated by my limits. I’ve beaten myself up. I’ve kicked and screamed and cried. I’ve physically hurt myself by trying to do more than I should. I hate it. I think I’ll always hate it but slowly and without any grace at all, I am learning to abide by my limits.

The delicate art of balance is one that I stink at but it is an art that I must continue to practice for my sanity’s sake. It is one that I must continue to practice so that I can find ways to still appreciate who I am despite how this disease has changed me.

Maybe I don’t multi-task anymore and maybe I can’t think as well or have the physical strength to accomplish as much as I once did but if I stay focused on the “can’t” then I stay stuck in the guilt, shame and anger. Somewhere in this imperfect body, is me. I am still me.

I think the most important part of learning the art of balance, is accepting that while parts of me have had to change, the core of who I am, the key parts of the person that I am, cannot be changed, damaged or abused by this disease. Balance is learning to accept my limits without guilt or hesitation and still know that I am me.