I read a great article tonight about fibromyalgia and it showed me something very important. I am reactive because I am embarrassed and ashamed.

Here’s the article:

Fibromyalgia and complex trauma are connected in so many ways. Do you deal with any of these symptoms?

22 “Embarrassing” Symptoms of Fibro That We Don’t Talk About

I don’t deal with all of these, but I do deal with many of them.

For me the most embarrassing thing (and the thing I get defensive about, and now thanks to this article I realize and accept that it’s because I AM embarrassed) is that I’m “too young” to have ANY of these issues.

People who don’t understand this kind of illness look at me like I’m nuts when I talk about my pain or my exhaustion, and tell them that those things are part of the reason I don’t go out much, but the MAIN reason behind my anxiety is that I don’t want to puke or get a messed up tummy in public.

I don’t make a lot of plans and I really don’t leave the house very much because between CPTSD and these symptoms, my anxiety is constantly through the roof – which leads to regular panic attacks and to depression in itself, in its own way, on top of “regular” depression.

I was recently diagnosed with both Celiac disease and major depressive disorder and put on a whole new cocktail of medication for depression (celiac is only treatable by diet, basically). And as the article says, all the meds have their own symptoms. But it makes me crazy and embarrassed when people say, “you’re not even 40 – you can’t possibly have that many health problems.”

They often have the same reaction – you’re just making excuses. It’s SO embarrassing when they say that it’s just nerves because I’m too young for any of that stuff. And it’s disheartening when they say things like, “you’re just not trying.” Like, you have to be 50+ to be excused of these symptoms.

I fall down every so often because of my joints and I often have a hard time keeping my balance. Sometimes I think people probably think I’m drunk. That’s ok, because that’s how it feels.

I also drop things CONSTANTLY because of sudden weakness in my hands and random shakiness. I have turned into Miss McButterfingers. That’s hugely embarrassing to me – especially when you drop the same thing like 7 times in a row before you finally have a grip on it.

And, the worst thing at home (which causes some tension in my relationship) is that my brain doesn’t work. Literally, if it’s not music I can’t focus and I’ll forget what I’m doing while I’m doing it. Even reading a book takes ages now because my brain can’t comprehend what I’m reading half the time. Homeschooling is SO complicated, even though I have notes and a curriculum to follow with my son.

Even writing blogs and these posts here, I have to read and fix them a few times (and usually still have errors I see and fix later). That’s hard because I love to write. I hardly blog anymore because of it. This post alone took over 45 minutes to write. That’s ok – insomnia means I have nothing better to do at nearly midnight. ((thumbs up!))

It complicates everything. It even effects friendships – but it’s generally me, not them. It effects moods and the way I process and see things…as well as how I react, often…to many things. Those who stick around, well, I don’t know why they do. It really is (and I am) too much for people. So…such is life.

I don’t share this to complain or to simply verbalize my experience. This has been therapeutic. These are real issues and I’m grateful to have read this article with quotes from people who go through the same things.

It doesn’t matter how old you are, how much money you have, what your ethnicity is, where you live, what you look like…having any chronic illness is HARD. It’s good to feel united with others who deal with these issues even if it’s just in an article on the internet.

If you are one of the many, many people who struggle with chronic illness, you are not alone. I see you when you’re invisible, I hear you when you’re silently struggling.

I support you and believe in you.

Lots of love,

C.

It’s easy for people who don’t have major depression or a chemical depressive disorder to look objectively at a person’s life and point out all of the logical reasons why someone should not feel sad, angry, anxious, or any number of other emotions and emotional experiences that come with depression. But depression isn’t logical. Depression doesn’t care to reason, and certainly not to show mercy.

You can’t talk your way out of it, pray your way out of it, think your way out of it, spiritualize your way out of it… You can’t analyze, theorize, medicate, or meditate your way out of major depressive disorder. You can’t shop, travel, read, or even act your way out of it.

For those people reading this who are in my shoes, you get it. For those in my life who can’t grasp it, I’m sorry. I know that you can’t get it. I’m sorry that I’m sick. I’m sorry that I am not who you want me to be or who I want to be to/for you. For those reading this who don’t get it at all, I hope this helps your mindset.

Please try to remember that it’s a disorder, not a decision. You can’t fake your way through depression every day. You get tired. And when you get tired, and feeling especially tied up in the straightjacket of depression, you really don’t care who sees or doesn’t understand.

Then, you regret that, because they think it’s them. They try to make it about something it’s not, because you should know if you pray or get spiritual or meditate or walk outside or even “JUST TALK” TO THEM!! then you will suddenly be ok! Then, you REALLY hate being here. You REALLY feel misunderstood and unloved. You REALLY want a drink and you REALLY don’t wanna take your meds – because you just want to sleep.

You want to sleep forever. You can’t move. You don’t shower. You don’t even brush your teeth. All you manage to do is go ahead and swallow the pills and go ahead and feed your kid and fake your way through homeschool. So…

The cycle continues. Until one day you say, “f*** the cycle. F*** it. F*** other people. F*** how it looks. AGAIN. I’m going to just make it stop.

And then you don’t. AGAIN. Because of him, in my case. My son. Because you’re too filled with love. That’s right – people with depression still love. They still feel “positive” things. And most often, when they commit suicide, they do so because they love others and they truly believe that the world and their people are better off without them. I know that’s hard to understand. But, it’s the truth.

Why? Why do they think the world would be better off without them? Not because of depression itself. Because they’ve had to fight their depression alone, which is impossible. They believe they are a burden. They feel their depression is causing too many issues for other people.

They feel…. Unloved. Ignored. Unseen. Without worth to add anything good to the world. They don’t want to make the world a darker place because they love. But when they end their lives, and usually while they are still alive and it’s often what pushes them to the end, along with the depression itself, they are labeled with things like selfishness, negativity, cynicism, laziness, etc.

None of those things are true.

You can’t do it alone, and anyone who says they did or do or that you can is a liar. Even if it was influences from media that helped them (music, movies, speakers, writers. etc.), nobody survives depression alone – especially not the kind that wraps itself around you like a second skin and doesn’t let go, and can’t be peeled off, and hurts even to try to put clothes on and cover it for the day.

And that’s the only reason I’m still here.

#welcometomyweek

I haven’t shared any of my music for a while, but, whelp, here’s a thing. Enjoy. All I can do right now is express the music (and the image edits) and that’s what this is. I may not have the words but I have the music. So far, I’ve always had the music.

The basis of this song is to end stigmas, to understand that those with mental illnesses need compassion and they need to be reached out to, not ignored or shunned or pushed away or further labeled, and saying goodbye to those labels.

There is some sort of problem with the video playing on mobile devices so if the video doesn’t work for you, you can listen to the song on SoundCloud as well as download it for free, for listening later.

I hope that YOU are doing well, and I hope that you get something out of this post that helps you better deal with or understand anyone in your life who struggles with depression.

All the love,

C. ❤️

**This song was mixed with Auxy using samples from Fanton ’87’s “Pay Phone.”

Partially rewritten from an old instagram account – the one that used to bear this username, I wanted to take a moment to catch up with you and tell you, in short, I’m doing a 5k in two weeks. 

I know, I know. What!?? My husband has been helping me prepare and is doing it with me, along with our little pup. It’s been a definite lesson in learning to listen to my body. Yesterday I made my best time, averaging just at 15 minutes per mile, which is basically shit for a runner but a miracle for someone pushing through with chronic pain. 

I suffered last night. Today I can hardly move. But this evening, weather permitting, we’ll be out again, pushing that time. Why? Because I WANT to. Neighbors and acquaintances alike are openly calling me crazy and expressing concern for my sanity more than my safety but using my safety as the key words, and I want to combine two things (this older writing rewritten for the now and a piece I wrote last night) and share it with you. Why? Because it helps me to share. 

Walk A Mile in My Shoes

I wrote this a while ago but was afraid to share it because I didn’t want to be seen as a complainer or as weak. This is what the stigma of invisible disease does to people. My friend sent me a challenge to share my truth as I used to – it’s called the #vulnerabilitychallenge. So, I AM going to post this & not be insecure, & know I am not complaining. 

If you have loved ones with CI or chronic pain, be patient with them. They can’t control their bodies & battle with them every day & some days every second. It’s hard to live with pain, especially invisible pain. Try to give them a break. 

Literally hours ago I felt like this black cloud over my head was lifting. I felt…happy. I got excited because the depression was leaving. But what I forgot is that it never leaves. It just rises & falls like the temperature…or the ventilator that kept my dad alive during his coma.

I realized I keep waiting – waiting to get better when I know I never will. I may not necessarily get worse, but never better. That’s what CI means. So I do the best I can…but forgive me when I suddenly crash, or snap at you, or act out of sorts or distant. It’s not just a mood. It’s not just pettiness or whining. Its not selfishness or taking you for granted. It’s fibrolife or a celiac flare. Don’t be angry with me & fuss at me or cuss at me or take it personally. Worse yet, don’t compare me to yourself or others – especially others with CI or depression. 

Instead, just take a moment to try to imagine your skin feeling like it’s on fire. Feeling like your legs are wrapped in barbed wire, and let down because it’s backpain again tonight, first headache in a while, leg cramps, stomach cramps, everything hurts, and it’s stress. My body reacts very bitchily to stress – especially extreme stress, like my preparations for this 5K. 

The day has settled down & now it all catches up with me. Don’t hold it against me if I don’t cope well with stress. But rest assured – I WILL walk on, I WILL keep pushing through, and I DO love you. But I am also upset with certain aspects of how I’ve been approached recently. 

It’s comparison that gets to me. Tonight I was reminded by a film I watched during this painsomnia marathon how my mother has always doubted me and how sensitive I am to rejection, being doubted, being abandoned as the weak or the crazy one…and how that has been feeding my insecurity lately from several different directions. This all in turn reminded me that I am plenty “enough,” and never “not enough” or “too much,” at least not for MYSELF, which is what matters, and I started thinking about how even though I know it will never happen, anyone who doubts me needs to stop judging and assuming and just sit back and watch me succeed despite the challenges I face or my ups and downs. 

Then I wrote this note (blog) that was amazingly well thought out and put together and accidentally deleted it because it posted twice but it was a glitch so when I deleted one it deleted the actual note (and yes I’m pissed). Sigh…

The whole idea was that I no longer believe that our thoughts alone create our experiences, or that life has “terms.” I believe that there is a reaction for every action and that regardless of our thoughts or best intentions sometimes bad shit happens. I don’t believe we can control our lives with our minds alone, and that our hearts and our spirits have just as much to do with it. I believe that our actions and reactions, good and bad, feed on themselves to create our lives, and I also believe (know) that our lives can be effected by the actions and reactions of others but that we ALWAYS have a choice in how we live and face our challenges. 

I don’t believe in living life on life’s terms, I believe in creating my own regardless of what life has to say about it, even if that’s the harder way of dealing with things sometimes, and I’m sick of hearing people tell me lately that I need to accept life’s terms, I need to be careful with my body or I’ll make it worse, I need to just accept that I’m older or that I’m sick and so I can’t do the things I used to. Pffft. I know that they THINK that they have my best interest in mind, but they’re not ME. How can they know what is best for me – especially when they’re only a neighbor or an acquaintance I ran into in the dollar store? They can’t – not even just because they had an experience and found out what was best for them. 

Look… Listen to me hard right now. How many people who get a cancer disganosis say, “ok, I’m terminal. I’ll just die now and not try to fight back?” Some may, I’m sure…but all the people I’ve ever known to get that diagnosis, in real life or friends/acquaintances online? They may already know they’re terminal and they’ll die but they still fight – 99.9% of people I know who have had that diagnosis have not just accepted it as “life on life’s terms.” I even asked Dorie one time, because I used to judge that choice and think, “if I end up like that I’d never choose chemo,” why she made that choice and continued to struggle with it even though it was that that was killing her and not the cancer… Her response? “It’s the only way I know how to fight this.” 

My experience with Dorie and cancer and caregiving and watching her fight…that was the moment that I stopped believing in life’s terms and started believing in the human spirit and in the human heart rather than some stupid idea about how life works the same for all of us. IT DOESN’T. In a general sense, we all live and die. Everything in between? Not exactly the same for any two people. That was a huge lesson and realization for me. I’ve always known we are all different and we all do things differently and for different reasons. But that was my first slap in the face of how stupid it is to compare people or hold them to a standard we might think we have for ourselves but that can change in an instant based on any number of scenarios we may face. 

Fighting my body but learning to listen to it at the same time has reminded me of that. Especially today, after reaching that milestone in my mile time. My hip and my knee – my whole right side from the ribs down, really, is screaming at me. But it’ll pass – and it would have screamed anyway, probably louder, if I hadn’t reached this point. It would all come in waves regardless of any choice I did or didn’t make – because hello…that’s how it works.

Anyway, all of this reminded me about comparison. That was the whole premise of this whole bit of word vomit to begin with. Don’t compare – don’t compare ANYONE but especially not people with mental or chronic or physical illnesses in general. It’s not fair, because we ALL do things and face things and accept things differently and at different times and in different ways and even on differently on different days.  

I get that people may think I’m super crazy or annoying because I deal with life at both ends of the spectrum to an extreme and refuse to just exist or live somewhere in the middle but that’s because I don’t WANT to be or live a mediocre life. And, it’s also because I’ve always been a passionate and very free spirited person and I’ve always had to fight – it’s a learned behavior. I’ve always had to fight – those are hard words for me to “say” out loud, but it’s true and a realization that deeper discussion in therapy has helped me to accept.

I’ve ALWAYS HAD TO FIGHT and it is a LEARNED BEHAVIOR – my mother, my health (yes even as a child – mostly because of allergies and reactions which we now know was related to celiac but especially the time I had chicken pox and then scarlet fever and almost died when I was 7, which is what led to my heart issues as an adult), my depression, and a whole hell of a lot of people in my life as a young person (family, not people just randomly existing in my life, but yes, some of those…) who never accepted me because I was adopted and who always judged and hated me and belittled me because I was different…I was bullied a lot in school when people found out I was adopted – and I still have no idea exactly how that happened; because of how my “family” treated me I NEVER talked about being adopted to anyone. I guess there’s always that “one friend” in middle school… LOL I digress…

Rest assured – I may appear weak at times, especially when depression has me down – depression is the hardest and cruelest battle I face and yes, I face it head on daily and “fail” miserably sometimes in the eyes of others and even myself when I forget that surviving another day is a huge achievement some days, but weak is the farthest thing from reality that I am or that ANYONE with depression is. It’s the farthest thing ANYONE with ANY disease is, physical or mental. So just because someone doesn’t complain or express thoughts about their illness to you and you think, “ohhhh they’ve got their shit together, why don’t I or why doesn’t she or why doesn’t he?” Just don’t. Because they DON’T have their shit together. They’re just dealing with it in a way that makes it look like they do – and if they’re not talking to you about their struggles it’s easy to think they’re not struggling. 

News flash – not everyone talks about their struggles. Some people are very private. Some only express their physical and emotional exhaustion when they’re alone in the shower or in bed at night crying themselves to sleep. Some express it with a scream into a pillow that no one ever hears. Some express it by not expressing it. Silence is a sound, too… I’m not one of those people that is very private, and that doesn’t make me a bad person or a weak person or an ungrateful person or a “not coping well” person… And tonight I’ve been reminded by art imitating life imitating art of how much I HATE to be compared to anyone else and how much I strive not to compare anyone else to myself or to others. 

I don’t want to hear about what you approve of or disapprove of how I have a goal to make it through this 5k coming up with a “broken body,” or about what I should do or what I can’t do or what precautions I should take and so on and so forth. I CAN READ and I have been researching my physical conditions a lot longer than you’ve been thinking about all the ways my legs might not work during a 3.3 mile trail run. Speaking of which, it’s ONLY 3.3 MILES. It’s not the fucking Iron Man. 

What I want is for you, if you’re one of those people, to just sit back and watch what I CAN do, despite my insecurity and fear and pain and my body that screams, “fuck you!” to me every time I begin and end a walk or a jog. I want you to sit back and choke on those words of doubt and judgments, even if you’re only thinking them. Because I will NEVER say them to myself and I don’t want to hear them from anyone else, and I don’t want to be compared to anyone else – especially not anyone else’s imaginary standards for me (which are generally double standards, anyway). Nobody does. 

Tonight I’m laying here with heat on one spot and ice on another, and you know what? I’m relishing in it – I feel strong. I think I’m stronger than the doubters and judges in my life because guess what? I’m doing something besides worrying about what everyone else’s is doing. I’m focused on MY goal and MY current “dream.” And I’m gonna get a T-shirt for this particular experience, whether I come in first or 80th or dead ass last. But what I’m really gaining is a window back into myself. And that is priceless to me, even if it costs me more than I have to pay in the end. 

I was challenged on Facebook to share “just me” in images and not just words. I suppose that’s a REAL challenge for me because I really despise sharing photos of myself, as most of you know. I’d much rather share the intimate details in words than to let you see my physical self. Who knows why – that’s so backward, right? I mean…that’s true nakedness.

Anyway, I didn’t copy and paste what the full challenge is but I did write my own thing because that’s kind of the space I’m in right now. The point of this challenge is to share just you, and lift yourself up, and by doing so encourage others to do the same. So…

This is just me. No filters, no makeup, sweating from hiking, in my element in nature. 

This is just me. No pretentions or expectations, a bit of a grimace coming through my attempt to smile because of the pain I was feeling in my body. 

This is just me. Christy. Leigh. Whoever I am by name, wherever I came from. 

This is just me. The nearly 39 year old mom of one who is struggling through grief, and who has so many diagnosed mental and physical illnesses I won’t even bore you by listing them again. 

This is just me. A woman you may not know anymore because I’ve changed so much or may have never really and truly known but who has been through hell just like so many others and is still here, somehow. Still has goals. Still has dreams. Still has a self inside. Still has a light somewhere inside all this inner darkness of depression and still fights on and walks through a lot more than what can be seen or expressed in words. 

This is just me. Yep, the fighter, the pusher-through. The trying-to-remain-an-optimist. The hoper. The lover. The never-giver-upper. The warrior. The mama bear mama-ing and trying to be the best example of surviving and thriving she can possibly be for her son, despite what she shares with the grown ups in her weakest moments. 

Here are the photos I chose – no makeup, no filters, just as I am about 99.9% of the time. This is JUST ME. I am beautiful as I am, I am strong despite my weaknesses, and I am enough.

“Climb the mountains and get their good tidings. Nature’s peace will flow into you as sunshine flows into trees. The winds will blow their own freshness into you, and the storms their energy, while cares will drop away from you like the leaves of Autumn.” -John Muir

Motivation Monday: something I’ve been working on lately is reminding myself not to get upset with those people who like to constantly remind me that, “it just takes time.”

I believe that most things take a lot more than just time. Fitness. Saving money. Spring cleaning. Healing childhood pains. Grief. There are many things which time alone does nothing for, unless we do something about them.

I used to get so frustrated with people when they’d say stupid things like, “time heals all wounds,” etc. Those comments only added to my frustration and pain. Some wounds can never be healed. Even with those that can be, time does nothing on its own. I’ve always considered that phrase a sort of cop out – but that’s just my perspective.

If the light in the thumbnail photo above stops working, we need to either change the bulb, check that it’s plugged in, or pay our power bill. We need to troubleshoot and solve the problem to find the reason it doesn’t give any light.

We need to both take responsibility and give ourselves some credit for what WE DO during that expanse of time between broken spirited, broken hearted, in a depression, struggling with CPTSD and chronic illness – whatever YOUR hurt is – and the moment that we feel some relief or healing or comfort again. It’s not down to time alone that helps you to be better. It’s down to what you DO with that time.

Today I encourage you to do something useful with your time that helps you to either solve your problem or to heal.

For me, it’s openly sharing and connecting with you all. It’s taking photos, or at the very least editing RF ones. It’s keeping myself  in my creative space. It’s actively surrounding myself with people who lift me up rather than put me down. It’s reading, researching, and keeping myself up to date/educated about my chronic illness, and putting massive amounts of effort into learning about/putting into practice the lifestyle I must live now with Celiac.

And? It’s allowing my rages, breakdowns and bad days with gratitude that I can feel at all, rather than be numb, and that I have the gift of expressing myself.

I forget my part in it sometimes and my light goes out again, so…well, in short, all this sums up to, “I have to keep changing bulbs & paying power bills.”

YOU can overcome ANYTHING. Give yourself a chance. Take your time. Be gentle. Go slow. Find your pace and go with it. Find your tools and use them. Realize what your needs and goals are. But never forget, you gotta show up to reach them. You have to meet yourself halfway. Please give yourself the gift of realizing that you’re valid, you’re worthy, and you can create a better tomorrow because of, even in spite of, today.

Much love, friends, and a happy Monday to all…

C.

I was supposed to be having the time of my life.

Much to my surprise at the disdain many feel for Sylvia Plath, she gets it all so right in “The Bell Jar.” There is a strong resonance there for me, from the exploration of self to the sheer willpower to survive an experience…only to, as Plath herself did, give up in the end. I struggle and I strive not to reach an end like that. Some days and even for long periods of time, as I mentioned in my last post, that is extremely difficult to sort out and to sort through and to achieve.

I have struggled lately to write openly because my goal is to shelter the world from more negativity than it is already swallowed in. The struggle, the pain, the complication, the general melancholy… But it seems to me, after some of your comments here and some of the conversations that have taken place in my Instagram DM over the last week, that there is no sharing the overcoming and the victory without sharing the struggle. What good, after all, is a victory if no one knows what was overcome?

For the record, for those who are new readers or who are uncertain what the struggle is here, I am striving to overcome my emotional battles, learn to live with (or despite) my grief, and gain some sort of normalcy in a life plagued with chronic illness and pain. All of these things could easily remain invisible. They remain invisible to some despite how openly I express them in my day to day life. My biggest purpose in working through my struggle to share is two-fold. The first is to somehow be a part of ending the stigma of invisible illnesses, both physical and mental. The second is summed up in one word: community.

I’ve been having a conversation with my new friend bumblebeechula (from The Musings of a Young Lady Girl) about living in a place of constant undermining and doubt from those people who we go to for help – in this case, doctors – and how constantly coming up with a non-diagnosis is so defeating. It adds another, more emotional/mental element to the battle of living with chronic illness. Then, we attempt to share our experiences and unless we can find some (almost impossible, unachievable) super shiny, positive way to express them those around us begin to view us a pessimistic, self-absorbed, even self-loathing… That’s not the truth at all – it’s just extremely difficult to cope with an invisible illness, and it’s nearly impossible to express it in ANY words in a way that someone who has never experienced it or struggled with it can possibly understand.

Just a quick example here: yesterday at my session, I was explaining to Ginny (my doctor, for all intents and purposes, even though there is no help for this disease aside from diet) that I was really beginning to struggle desperately with anxiety and depression because of my Celiac diagnosis.  My husband, who was with me, quickly belittled my expression and my concern, and literally said the words, “she says that but all I can see is her doing better all around.” Exactly. That’s what HE can see. Because all of these issues – celiac, depression, anxiety – they’re all invisible to anyone who isn’t walking in my shoes. People can look at me and see the most put together, healthy, wonderful woman if they only see the cover. And that’s what they do, even when I try to open the book for them and give them a peek inside.

I hear everything from how I’m too young to be dealing with peri-menopause (even though it’s been scientifically proven that I am via my bi-weekly blood work and other testing), to how it’s ridiculous that I’d be complaining of issues with hip pain and pain in my hands (due to also medically diagnosed arthritis), to how gluten sensitive and celiac is just a total crock of sh*t, to how mental illnesses like anxiety and depression are just excuses not to do things and/or to avoid my true problem which is grief – which, by the way, is apparently something that is only a problem because I refuse to let go. What I personally find ridiculous is how, even if I pull out the paperwork and show people (hi, Mom) the reality of what my body is going through, it is quickly reduced to being all in my head, every single time.

I lost my mind over on Instagram earlier this week because the above experiences were finally culminated with some DM’s regarding my sharing of Sylvia Plath quotes. The one that really “broke the camel’s back,” as it were, was the one from a complete stranger, an eastern Indian person studying to become a doctor of some sort, who politely encouraged me by saying, “please stop feeling sorry for yourself and don’t put your head in an oven,” a play on how Sylvia Plath committed suicide. It just pushed me right over the edge – and the ensuing public conversation was about how, YES, I became defensive; I did not, however, become defensive of myself – it was for all the people struggling with invisible illness and how much harder their daily battles can become because of off handed comments like that. In reality, none of what I posted had a thing to do with feeling sorry for myself. It had to do with those quotes being exactly the reality of my life at this time.

It is beyond the truth: statistically, any 38 year old woman should be having the time of her life, whatever that means for her. Whether it’s reaching highs in her career, or being a single woman with resources who wants to travel the world, or being a homemaker and a mother, whatever she wants to do with her life, by 38 all the women I know are busy achieving their goals. The majority of them are having the time of their lives and living like crazy. Me? Not so much. I’m NOT having the time of my life. I’m busy struggling with chronic illness, the loss of both my mother and my father, the hopeful rebuilding of my marriage and my life, and the depression that is developing regarding all of those things…

I’ve been diligently working through “You Can Heal Your Life,” Louise Hay’s one-stop-shop for how to change your world and create a healthy, happy you, all by simply proclaiming it to be so, and I find myself becoming more and more disgusted with her methods and her ideas. It’s hard because no matter how many times a day I look in the mirror and proclaim to myself, “I am healthy. My body loves me and works just as it should,” it does NOT negate the fact that my body is not built normally on the inside and it will NEVER work just as it should. That’s just factual information – not doubt, not negative self talk…

My body is broken compared to a “normal” or “healthy” body and the thing that is broken about my body can only be managed for the rest of my life – it can never be “fixed” or “healed.” It’s so annoying…because I swear on my father’s grave that is not a negative statement or something that comes from a deep pit of negativity inside me. It’s just…reality. Some realities are not positive and happy. And therein lies my challenge of expressing it all without being read as Negative Nancy – because that’s the last thing I want to bring to the world…

As I mentioned, I’ve been conversing with bumblebeechakula about this and one of my most inclusive replies was, “Thank you for the encouragement to continue posting. I’ve been battling with that for a little while now, which is almost hilarious as I only started this blog this year. Sigh… It’s true what they say – it takes a village. Not just to raise a child, as the saying was initially about, but for so many things. Coping with chronic illness is one. I’m happy you’re part of my village, and grateful to be welcomed into yours.” This was in response to the most wonderful, perfect statement in her comment about dealing with chronic illness. “I think it’s so important to share our stories with other people.”

It IS important. And it is important for them to see ALL of it. Chronic illness, whether physical or mental, is hardly ever an easy experience. It is most often riddled with confusion, frustration, pain, and getting knocked down more times than you feel like you’ll ever have the strength to get back up from. Most of us DO get back up – over and over and over again, sometimes multiple times a day. But it’s not without struggle and it’s not without some expression of the pain, whether it’s a wince or a grunt or a moan, or a random, monthly rant to a friend or on our blogs or social media about that frustration and struggle. Those “once in a while” expressions of the reality of the struggle are not cause to label a person as weak, or negative, or a complainer, or self-pitying, or selfish. It’s cause to label them as a person who is struggling through some extremely difficult thing and COPING.

I think it is important to change the perception of chronic illness, as I’ve just described. I think it’s important to show all sides of it, and then, when we do have victories, no matter how big or small, they serve a far greater purpose in encouraging and helping someone else. Nobody who ever had it all from the get go ever made an impact in this world. Every single person who has made an impact in this world has had their own, personal, fair share of struggle – whether financially, physically, mentally, socially, etc., anyone who has changed anything in this world has not done so without overcoming SOMETHING on their way to making an impact, and that, my friends, is something to be commended.

In closing this post, I want to share a sort of a story with you. It’s a story about this image (below) and where it took me.

I stared at this photo for quite a long time. It really resonates with me, much like the Sylvia Plath quote I shared above. It forces me to consider how this is a very good representation of what life often feels like when you have an invisible illness or disease; when you struggle with chronic physical or mental illness that you can’t prove to anybody.

After some of the responses to my DM’s after my Sylvia Plath posts, I had a friend – a good friend – reach out to me and say, “you know you don’t have to defend yourself or your choices. You’re under no obligation to defend anything to anyone.” That is SO true, but I think what I realize from this comment and from thinking about what she said is that it’s not defense of myself that is my concern.

I do not defend my choices of posts. Rather, I defend the general issue – the open expression of the struggle people face when they are battling depression. Especially in conjunction with chronic illness, it’s something people tend to not be able to wrap their heads around. It’s a struggle they can’t grasp, and because of that they often falsely judge others and they publicly add to the stigma of both mental and physical chronic illness.

That’s where the root of my defensiveness lives. I don’t think I’ll ever reach a point where I don’t feel obligated to defend the world of the chronically physically and mentally ill against stigma. I’m upset at the population in general from that standpoint. I wish I could educate in a “better” and more tangible way, but for now all I have are my own experiences and thoughts. I have quotes, and my photography and writing. Those are my only tools, and the things that I’m good at. Those are the ways that I’m comfortable and best equipped to be an example. Whatever your way is, please USE IT. Please keep expressing.

My experience this week personifies the struggle of judgment, undermining, and insult that people face when they live in a world of chronic invisible illness. So many give up trying to express themselves because of this. Don’t give up. I don’t want anyone to give up. Ever. Especially not on themselves. THIS is what I want to change in the world. THIS is my goal. I want to help people to understand, and to BE understood. It is equally important, from both ends of the spectrum.

 

It’s been a weird several days. Aside from life being life, I am basically at a loss for what I want to share as far as subject matter of images, or how I want to share them – especially on my photography blog and on my social media platform of choice (Instagram). I mean, I don’t like the random. It feels too chaotic. I like things to sort of “match” and to blend and flow. I’m into themes (you can probably decipher that if you look at my Instagram profile as a whole for the past several weeks of posts). It’s got something to do with symbolically maintaining a bit of control of myself and my life.

I feel a lot of panic lately. I feel a lot of panic in general but my death panic is the worst part of it. My death panic is BAD lately. Not just my death panic for myself (I’m not afraid of death, but of leaving my son without a mother), but also my death panic about my mom (who, even though we are…not the best of friends, is my only living relative left), death panic about friends, death panic about my son’s family and him facing grief. It’s like all the loss has caught up with my mind and the CPTSD stuff is not helping.

I’m oversharing again, as I do. This is why I have a blog. Sigh.

I’m trying to think and exist in a positive space. I’m focused a lot on my illness and restoring my physical health (new probiotics in the mail!!). I’m also spending a lot of time planning the food I’ll grow this season and preparing my raised beds and backyard for all those grand ideas. That helps. It’s good to hang out in the outdoors in shorts and tshirt and get dirty and sweat already. I like that a lot. I didn’t think I was ready for winter to end this year. I WAS WRONG. Nope, still not a winter person.

I digress (as usual). Here’s where I was going to begin with:  Sometimes my thoughts feel like they are (almost) literally flying around in my head. It’s like this very demanding, exhausting experience of what feels like mental gymnastics to try to flip and bend, leap and stretch, desperately trying to both understand what all these thoughts mean and how they entertwine, and to somehow make something graceful out of it because otherwise it’s just going to be an extremely tangled and not very asthetically pleasing mess. Nobody likes a tangled, un-asthetically pleasing mess, especially if it is one inside their mind that they have to carry around all day, every day.

Sometimes there are so many thoughts, encompassing such a vast expanse of ideas and issues, that they seem to crash into each other and meld into a fleeting fusion of momentary wonder and I really have no full idea what they have actually become before they disintegrate into the mental exhaustion that envelopes me from trying to sort and understand them. It’s a bit depressing, really. When that happens I feel so…unintelligent, incapable, and silently swallowed. If I can’t express my thoughts – my words – then I am silent, and when I am silent I feel like I can’t breathe.

It’s not a need to express myself and be read or heard, necessarily. It’s just expressing in general, whether it is in a private journal I keep or the notepad on my phone that nobody ever sees, or a blip of an Instablog on Instagram or a full blog post here. It doesn’t matter if anyone sees it (much less understands it). It’s just getting it out. What matters is that I am understanding myself. That’s what this entire blogging/instablogging/online conversation is about for me – that, which is where my writing comes from: the depths of my being; and, it is about hoping someone else finds inspiration or support of some kind as I make my way through my now.

So, when I find myself left in silence, it’s because I am not understanding myself and I can not find or even create the words necessary to do so. In a general sense, that has never bothered me; recently, it has become unacceptable for me. In the last few years this experience has come to create a choas and a discomfort within me. I hate it. But what I have found in the last few years is that in those times the words are not what are important. It’s the feelings – and sometimes there just aren’t any words that are appropriate. Feelings are a language all their own, and I am reconnecting with that, within myself.

It’s especially complicated on the days after nights when I haven’t been able to sleep. It’s a consistent – perhaps chronic – theme for me lately, this not being able to sleep. Not being able to sleep means that a) I have this plethora of constantly running ideas and thoughts and feelings overwhelming me and b) I’m forever exhausted and being exhausted does NOT help me to cope with the mind noise that is always there. I always try to write it away, and for years and years (most of my life) that has worked. It works better than music, better than meditation, better than escaping into a book…writing is what works best for me. So why can’t I write now, when I so desperately need my writing and to break my silence? I don’t know.

What’s changed? What’s happening? Most of my followers/people I actually have gotten to know and have followed ANYWHERE online have long since wandered away from the different sites and forums. So have I. I’m no longer on Facebook, post on deviantART about once every six years, blog about once a month (except for this blog, which I started this year for the precise reason of thinking that a fresh, new slate would open new possibilities for my inspirations and my creative drive), and I am even getting really sparse with my posts on Instagram, which is a complete shock to even me.

I don’t know what changed, really. It’s been a very slow decline for YEARS – after having my son in 2009 I just kind of…fell away from the world in general. I was too busy for anything else. Then, I got myself involved in a whole bunch of exquisitely beautiful crazy that brought me back to my creativity and desire to be expressive (gotta be grateful for having a muse cross your path), but then my dad died in July 2015. At that point, I was foundering… When my best friend Dorie died of cancer in March of last year (March 22, 2016), I just kind of died along with her in a lot of ways.

There’s been SO MUCH DEATH and loss and destruction of me over the years – especially throughout Dorie’s cancer, because of the cancer and because of the things that were going on my life during that time. I am STILL trying to comprehend that period of my life. My creative side has always remained, and always continued to be my sanity, but lately I find myself in a desperate struggle to express it. It’s not even that I fail because I try to force it. I don’t even have the oompf  to do that.

I tried to start over on dA and created a new account and everything, but I never use it. No one really connected to it – no one was really left there that I knew anyway… I have taken up with the Instagram community, and that’s mostly where I share my photos at this point, and has been my hub for about two years now. It’s really easy to share my photos with my mobile devices there, and I rarely touch my computer anymore except to blog. Instagram is convenient. There are also a lot of friends there who help me through the ups and downs of grief, cptsd, anxiety, panic, and my celiac diagnosis… I appreciate them, but I haven’t even been active there for the last week and my activity for the last few months there has been sparse, to say the least. I don’t know what’s going on, really.

I’m not in a creative slump. I just feel like there’s too much whirling around in my head. I can’t sort it. I can’t see any of it clearly enough to do anything useful with it. Dorie used to say,  “You’ve got to step outside the tornado.” It was kind of our little process, together. Step outside of the tornado, and start identifying and picking up the pieces, even as they still fell. That always worked amazingly, because we would help each other through that process. We both understood the process and how it worked so we didn’t even really have to talk to do it. It just happened. Now, she’s not here and I can’t seem to do it on my own. Not effectively or efficiently, anyway. My last post, where I shared about deleting my past, was the most effective way that I could step outside the tornado. I managed that part. But even though the mind noise has become quieter, I don’t know what to do with what I’m observing about myself.

I feel like I’m stuck in this weird, empty limbo. I don’t even know why I’m choosing to share this because I know that the likelihood is that it makes little to no sense. I suppose the point is that I’m grasping for straws and just hoping for something useful and solid to grab onto. I think it’s safe to say that in a very general sense the year 2016 sucked for EVERYONE. I feel like that’s carried over into 2017 with my newest life situation – my mother has begun the fall into dementia and that’s very hard to deal with. Caring for her is the hardest thing I’ve ever done because we don’t even like each other. That cptsd thing I mentioned before is rooted in my childhood with my mother.

It’s all very stressful and emotional and I think the truth is that I’m just exhausted. I’m exhausted from figuring out and dealing with life without my Dad or Dorie here to be my guides. But, we all eventually face that time where “we’re it.” You know what I mean? It’s hard. It’s doable though – we’ve been doing this for thousands and thousands of years, right? The cycles, the whole “life” thing. Life on life’s terms – I cringe to say that phrase but it’s the truth…

Alas, I hope YOU are all doing much better than I feel like I am doing with my life in 2017. I hope 2017 is treating you kindly. I hope you are still feeling inspired and driven and still making art, whether with words or paints or cameras or your hands…whatever medium you’re into. I’m not feeling very present today, so I admittedly have no idea who is doing what, where, or how – especially not those I have lost touch with online or in real life… But I do think of everyone I “know” every so often, and I find myself thinking, “I miss the ‘old days…'”

I will end my “catchup post” here, as my cat’s snoring is taunting me to rest (and my tired muscles, after having worked in the gardens all morning and early afternoon – I’m so unfit since winter, but working on it!). Hope you’re all doing well and having a lovely start to your week! Much love and happy arting…

C.

I’ve been reading what is still attributed to be your letter(s), since seeing a blip of one of them appear in my feed a few days ago. What a masterpiece it truly is, the book of Hebrews. It’s wonderful, mostly. But I’m torn, Paul. I’m just torn. First of all, after refreshing myself on the history of your “book,” Hebrews, I am just not convinced that you are actually the author. Nonetheless, henceforth another author has never been named so it is to you that I write. Mostly, though, I’m torn by the implications of this one verse. I’m torn because it’s relative…

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At some level, it’s almost ridiculous for me to have issue with being satisfied with what I have. This is true because I have an abundance at my fingertips. But here I sit, unsatisfied with what I have because I simply CAN’T have the abundance. I live in a world where, specifically, food is not out of immediate reach. I also live in a world in which that food a) is so expensive that many who share this world with me are still hungry because they can’t afford it, and b) is so unhealthy they really needn’t eat most of it to begin with. Personally, I find myself in a place where I can neither afford the food nor can I eat the food. It’s a conundrum, isn’t it.

Let me start at what is generally the best place to start, Paul. The beginning. I was recently diagnosed with a disease that prevents me from eating about 80% of the food that I have eaten all my life. Breads, most starches, dairy, and ANY processed food that isn’t specially prepared and extremely overpriced. For the time being, I also can’t eat red meat. That might end up being a long term thing, depending on what my heart decides to do. As it turns out, the whole thing has made me believe there was a much deeper reason that I have always hated food. My body simply doesn’t deal well with food. Alas, as I was saying, I have been diagnosed with a disease that has basically ended my life as I have always known it and started me on a new journey to, at the most basic level, stay alive. It’s called Celiac disease, and IT SUCKS.

You see, Paul, Celiac disease is much more than just an allergy to gluten. In our world now we have this ridiculous fad happening that revolves around a gluten free lifestyle. What happened was that research began to show that gluten was really bad for many of us, at a basic level. Many of us had developed (or always had, as the case may be – gluten stuffed foods haven’t been that big a deal for that long, only since the mid-20th century when processed food became a booming business) an allergy to it. As the research and the noise grew, so did the greed of many companies and individuals who saw an obvious chance to turn “gluten free” into the next fad diet and slap the label on their products and sell it for a ridiculous amount of money. People bought into it, not even fully understanding what the big deal was to begin with.

So, now, here I find myself. Two or so weeks into the initial diagnosis and while I have to admit that I am better for it all the journey has not been an easy one (and will not be, ever). I am not inclined to simply be grateful for what I have, Paul. Why? Well, it’s funny you should ask! Because, as it turns out, I am MORE than prepared to explain that:  It’s because of the money, Paul.

Why TF does it need to cost five times as much to eat healthily, and to have a disease? (Here I am tempted to ask you where your Savior is to magically heal me, but never mind that for now.) I’m infuriated. I went onto the internet to search for gluten free foods that I needed in order to help myself create a more balanced Celiac diet (and fulfilling, if I’m being honest), and found that it’s nearly impossible for me to be able to do that. I am not satisfied with that. I am NOT SATISFIED with just raw vegetables and fruits and juices. NO! No I am not. I am not a vegan, Paul. I am not a even a vegeatrian. And, the truth is, I don’t want to be. Perhaps someday I will find myself in a different frame of mind about the whole thing but for now? I am not satisfied with this necessity, because it shouldn’t BE a necessity in the world I live in. I shouldn’t have to settle, and neither should anyone else, because of a disease. Not in this country. Not in this world that we live in.

Turns out that I am required to spend upward of $20 for four pounds of flour, Paul. WTF is that? It’s rice. It’s not like you can’t buy rice by the truckload full for $20, yet RICE FLOUR is made of gold? It’s because of the process of turning the rice into flour, you might ask? Well, I don’t buy that. Not in this already mostly over processed world where you can buy the equivalent of eight million calories in junk food for $20. No.

I have to pay $20 for four pounds of flour, $17.95 for 6 ounces of crackers, $15 for a pound of pasta, why? I’m being punished for my body rejecting the absolute SHIT that society has come to know and love as “food?” That’s what it feels like. It feels like I’m (we’re) being punished for having a body that rejects non-food, and to be perfectly honest, Paul, I think that’s BS. It literally makes me feel like crying. People’s health shouldn’t be a monopoly, ever, but especially not in a place in the world where healthy foods are very easy to come by. I feel for people who live in countries where there isn’t much food, not to mention those with no food at all… But, at the same time? I don’t live there.

No, I don’t live there, Paul. I LIVE HERE. I live in the land of plenty. Of milk and honey, if you will. And YES I am grateful for that and in so many ways it IS enough. It IS a blessing. But in this situation? Not so much. I don’t live in those places in the world where food is limited if not absent. I don’t live there. I’m blessed to live HERE. Most of us on the Internet are blessed to live “here,” wherever that “here” is, and I don’t think that we should have to choose between being able to pay our bills and being able to eat food that doesn’t make us sick. Especially considering the state of healtchare in my country at the moment. That’s a whole other issue, I won’t digress.

The point is that from that aspect, we are no better than the people who are lacking nutrition in third world countries. That’s what Celiac is: the body’s inability to absorb nutrition, in a nutshell. In that way, even if we are eating foods in this world, our bodies are reacting to the food in much the same way that starving people from another world would have their bodies react to NOT having food, because basically? Our bodies are still starving, no matter what we eat. Celiac disease means that not only is there an allergy to gluten taking place, but the body’s response to that allergy is so severe that the organs become damaged, and then they are not able to properly digest food or absorb vitamins, minerals and other nutrients from that food. Therefore? Starving…

It might sound a bit like an exaggeration but it’s not. Not in my experience, anyway. All I can do this morning is sit here near tears and assess my food choices and my bank account versus my bills. I am not embarking on the gluten free diet because of the fad or because it’s what the cool kids or the health nuts are doing. I am doing this because I have to. I’m doing this because if I want to stay alive for any length of time without further, more serious health issues (and possible death – look up the six ways Celiac can kill you, I’m already on my way with an enlarged heart and an under-functioning liver) I have to eat this food.

I DO expect to pay a little more for gluten free foods because I know that the demand is not high compared to the demand for McDonald’s, Oreos, and our favorite pizza and beer. I expect to pay a LITTLE more – not double, or triple, or even quadruple the cost of “regular food.” It’s actually terrifying to me, because I can’t afford to eat the Gucci of food, and I don’t want my son to have to eat crap just because that’s what we can afford.

A conversation was started when I initially posted these thoughts on Instagram, and this is what other people had to say:

“It sucks! I looked into it to see if it would help my stomach issues but there’s no way I could afford it. It’s hard to afford healthy as it is, and then throw some other issues on top of it…damn near impossible.” @curlyredhairednewfie

“Try the low carb grocery. Still expensive, but maybe not that bad?” @trashpandachic

“It is disgusting how the food system has been manipulated. We gotta get back to real food or it will end us.” @relentlesspeace

“You make a good point. If you like to cook there are interesting cookbooks like The Wheatbelly Cookbook which uses alternative flours like almond and coconut. Absolutely much more expensive, no doubt. I try to eat gluten free not because I’m celiac or it’s a fad. I am 100% better physically (no digestive issues as opposed to tons eating wheat), emotionally (it leaves me angry and lacking energy), and it acts like an appetite stimulant…one bite and I just want to eat everything in sight!!! It’s a tough road but what a difference it may make. Good luck my friend.” @captain_jack_official

“You’re right about costs. It’s crazy. Poison over processed food costs much less than healthy food. Weirdness.” @jrcline

Now that I’ve sampled some comments, let me sample for you some of my responses:

It’s not overdramatic and psychosomatic of me (as some have accused me since I started on this journey, thanks fam!) to admit right here and now that I don’t expect to live beyond 50-ish, if that, if I don’t make this change. So, I don’t know what to do. Celiac is linked to gall bladder and liver problems, which I already have (my liver is currently at 70-something percent, also due to previous lifestyle with medications and alcohol and poor diet, no doubt). Add to that my enlarged heart and arrhythmia and even with no smoking or alcohol I’m a walking time bomb for falling over dead if I don’t make this change. The mental health stuff that is caused by the disease is just icing on the cake.

I’ve been living on fruit/veg/juicing for days and I can’t do that forever. I had to, for the initial cleanse, but now it’s time to eat and I can’t live on fruit/veg/dried beans/etc. alone forever (not to mention how expensive fresh produce is compared to it’s junk food or frozen, preserved counterparts). I am not supposed to have any dairy either. It’s a cross reaction thing…plus I’m allergic to milk to begin with (and NOW we know why!). Soy and nut milk/products are as outrageous cost-wise as other gluten free products. It’s ridiculous. I’m ranting, I know. But you know what? I’m terrified of dropping dead and breaking my son’s heart. That’s where my mind is this morning.

The low-carb thing is a great idea, but the problem with that is that there can be NO cross contamination with gluten products. Low carb doesn’t always mean gluten free. It’s about flavorings, fillers, and other ingredients (namely wheat flours but there are so many others). A product can claim to be gluten free because it doesn’t use wheat flour, for instance, but still contain gluten in the flavorings, fillers, and other additives. It’s very hard to trust even general gluten free labels because of cross contamination and the use of the labels to further the fad and to make money. It should be a crime.

Even a single loaf of low carb, gluten free bread rings in at nearly $6, and that’s for a loaf about HALF the size of a full, normal loaf of everyday, $2-a-loaf bread. I would happily pay the $6, without complaint, if the loaf was the same size and amount as the death loaf. Do you see what I am saying, Paul? I will NOT just be content with what I have. Why? Because I can’t freaking afford to be!

The thing that gets me the most since being diagnosed with Celiac is that there are SO many people who actually believe, regardless of the lack of research they’ve done or knowledge they have, that even gluten sensitivity is a crock and nothing more than the equivalent of heartburn when you’re “sensitive” to spicy foods (which is ALSO far more detrimental to the body and health than people seem to realize). If your body is trying to tell you that you shouldn’t eat certain foods by reacting negatively when you do eat them, maybe it’s time to LISTEN TO IT. It’s a real thing. There are people out there who are truly, miserably, and dangerously sick because of these “foods.” Health should not be a fad, and it shouldn’t cost the way it does.

Why does ANY healthy lifestyle have to be considered a fad, or be demeaned, or made fun of? Regardless of whether a person MUST eat/live that way because of an illness, or because they simply choose to because they feel better and thus live a happier life than they would if they were eating a “worse” diet, it shouldn’t be a thing that is so blatantly criticized or demeaned. I know it’s because a not-as-healthy diet is the norm in our world, I totally get that. I don’t think ANYONE should be demeaned , but the ones who should be criticized are the ones who have eaten so much processed, ridiculous non-food labeled as food that they are now chronically ill, and yet CONTINUE to eat that food, and drive up healthcare costs and do little if anything to educate anyone else about healthier alternatives. But why do so many people choose to do that? Because financially, they don’t really have a choice. So maybe they shouldn’t be criticized at all! No! They shouldn’t.

The problem is that medicine has become the lifestyle that enables food rather than food being the lifestyle that prevents medicine. Our society is so warped on that, and all so some moguls can put money in their pockets. Does that make sense? No, no it doesn’t, Paul. But that’s the world we live in. It disgusts me, especially finding myself with a chronic illness that HAS NO TREATMENT except diet. It’s funny how the medical system doesn’t really care or acknowledge it at all, really, in my experience with doctors regarding my diagnosis (except my GP, who is AMAZING). In general, they don’t care because my illness doesn’t make them any money. They can’t shove pills at me, or treatments, or anything that benefits their wallets, so they don’t have time to discuss it or help me.

That’s fine. That’s just fine. I don’t WANT their help. I’ve spoken to a nutritionist and I’m looking for a GOOD, reliable naturopath in my area (coming up empty, as yet), and even though that’s not something my insurance covers (not that it covers much as far as doctors are concerned, either, at this point) I’d rather see them because THEY CARE and they’re HELPING ME. It’s just figuring out how to pay for it. That’s what got me to this point this morning.

So, you see, Paul, I can’t just be happy with what I have. I can’t just be content. Not only from the aspect of my illness, but in life in general, I tend to live in such a way that I am always striving for more and for better, for myself and for my family and my son and for the world around me in general. I’m not a person who feels very good about just sitting back and being complacent. I just don’t have it in me. That doesn’t mean I don’t see your point – I do. I totes do, as we say these days. We should ALWAYS be grateful for what we have, and in most cases we should be satisfied with what we have and not become greedy or take anything to excess. But that’s not the point I’m focused on here today. I’m focused on staying alive, and I’m finding it really rather difficult to do so these days…

Thanks for listening, Paul, even if you are an imaginary character to whom writing has helped me to better and more comically express my thoughts about my disease and my only option for treatment. I truly do appreciate it. Have a lovely week…

C.