Excellent blog describing what it’s like to live with an undiagnosed illness.
I think it’s time to say goodbye to you.
Not that you will know, because I am not going to tell you, and I sincerely doubt you will notice for a while. At least, not until there is something you need from me. I hope I am strong enough to let my silence speak for me then, because you do not deserve to know what is in my heart and mind anymore.
I view relationships in an economic sense. When deciding what relationships I can take on, I look at my emotional “budget” and what I can afford to invest. While this may sound a bit cold, I think this is a smart way to operate, because our relationships truly are investments we make, and we pay in the form of time and emotional energy. Sometimes we see returns, and sometimes, we don’t, and if we are lucky, we at least break even. If we are not so lucky, we suffer a loss and are forced to absorb it. These losses often cause us to pull funding from other projects we have invested in, and can substantially impact other unrelated outcomes. Like that break-up that I struggled with last year, when it became hard for me to speak to anyone, even my close friends, for a little while.
And then, of course, there are the times when investments pay off, wildly, beautifully.
My budget for us is blown and I am pulling the plug and taking all funding away from the friendship I have spent the last few years making investments in, the one with you. Notice my wording – investments I have been making. Because, let’s face it, this has been a pretty one-sided relationship. I gave it time to see if this was truth or if it was my insecurity and neurotic personality traits coming through, because I know my limitations and realize that this happens at times. And there were times that it seemed you reciprocated. Time was needed to track patterns and to eventually use this data to forecast our possible outcome.
I knew there was an aloof coldness and emotional stinginess about you, but some could say the same about me. This alone is not an indication that a person is unable to be loved. So I decided to monitor the status of things between us for a while, invest only a small amount periodically, what I could spare if need be, and wait and see what the long-term outcome was. I saw some really wonderful things about you, the way you think, your sense of integrity, your critical thinking skills, and your sharp witted sense of humor. I still think that it was worth it to attempt to nurture things and see what the outcome was, and I wouldn’t go back and change my mind if I could. It was worth trying, I believe. Any kind of love or finance is usually a gamble.
Over the course of months, I noticed some patterns, ones that, quite frankly, didn’t bode well for the future of our project together. The frequency of your energetic investments seemed to peak during the times when there was something you needed from me, specifically. You only seemed to respond to me around the times when there was something you needed from me. My connections, my love and concern, my company; these are all resources you called upon when it suited you. Surely you had noticed that I was pretty consistent in my affection and fondness of you, and you seemed pretty comfortable with benefitting from it when it worked for you. Damn right I was consistent – I stand behind my investments with diligence. I don’t do things half-assed.
Some things in my life kind of hit the skids. I needed to draw from some of my investments in order to have resources to navigate some trying times. About 95% of my other projects had equity to fund me through this rough time, thank goodness, and I was able to manage.
Yours was not one of them. You were nowhere to be found. And now, you must go.
I admit it is with some sadness that I cut this whole thing off. It’s hard to walk away. I really liked you and wanted to have you in my life, as childishly simple a statement like that may be. It’s the truth. But the facts are there, black and white and undeniable. I have always been more invested in this than you were. It’s not equitable for me. Why should I keep pumping funds into you, a project that is happy to eat my energy and love but is unwilling to reciprocate? That’s foolish, and really, quite embarrassing.
I am sure eventually there will be another message from you, some text or something, when you want something from me. It will start off as a hello, then a “Hey, can you…” I will remind myself to hold back that good-natured part of myself, the puppy part of me who is always so glad to see a friend and jumps on them and covers them with kisses. No puppy kisses for you anymore, sorry, love. No reply for you.
When it comes to our relationship, I’m spent. Cashed out.
Good luck to you out there. Maybe someone else will see your potential the way I did, and maybe this time, you will appreciate it and recognize the value there, instead of ignoring it like you did with me, and throwing your resources into some shoddy scheme like I have watched you do many times.
Some people do not have the sense for emotional high finance.
I loved this so much.
If you saw me today and asked me how I was feeling, I would say with a smile, “Hopeless. I feel hopeless.” And then I would tell you that I am so thankful to have learned the power of hopelessness.
You might walk away confused and certain that my last marble finally rolled away. But if you stayed and asked me what I meant, then I would share with you the book that my amazing, under-appreciated (by me) husband gifted to me because he knew it was just what I needed. Apparently, he knows me better than I know myself.
So what’s this incredible, life-changing book that is taking away all of my hopes? And why in the world would I continue to read, and enjoy a book that leaves me feeling hopeless? I thought you’d never…
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I’m on a roll today… tired of people telling me to not research my health issues. “Quit being a Web MD doctor,” they tell me, with an amused smirk in their eyes, as my obvious ridiculousness has apparently tickled their good senses. I’m such a silly goose, I know. It’s not just that whole thing, but also the frequent vibe I get from people that whatever is going on with me, I am obviously bringing it on myself. I’m tired of much of the attitude I encounter as I work my way through my medical issues, quite frankly.
Please, enlighten me. If you have suffered pain and symptoms that have interfered terribly in your life for YEARS, and you have done lifestyle changes and seen many medical professionals and had operations and taken medications and you were still not well, what would you do? Lay there watching Netflix, figuring some doctor will eventually get it figured out? Somehow I doubt it. You will want answers and you will want hope that it may eventually end. I am not a moron. I am a good researcher. I have learned how to discern types of information into legit or not, learned to observe the when and what of my symptoms, and I have realized that I am the only person privy to my feelings and symptoms. So, yes, I am going to continue to work at it, because at the end of the day, I am the true expert on me.
Furthermore, I am so sick of all the judgement I feel coming at me. My health issues are not my fault. I don’t think I deserve them. They are not a manifestation of a mental illness. Sorry, guys. When I suffered severe PPD and had a years-long mental breakdown, I can say that I did not feel like there was an infected piercing inside my rib cage back then. I was able to eat without it causing me searing pain daily. I used to be able to laugh without having to stop because it hurt. You would think that if my pain was caused by depression, then, logically my pain would have peaked with the depression. But my issues did not come along until I was out of the woods on all that stuff.
And yeah, I do live a first-world lifestyle. I do have an office job and a daily commute. I eat packaged foods and read on my tablet a lot. I drink alcohol moderately and have again started to use fluoride in my toothpaste. I am vaccinated. My lotions have parabens in them. However, none of the people in my life who also live this life have the issues I do. I’m assuming searing abdominal pain is not part of my colleagues day-to-day like it is for me.
But what’s funny is that when this all began, I was going through my “truther” phase – eating the “cleanest” diet of my life, drinking kombucha and eating mostly raw foods, and I had reduced my use of products that were not “natural.” I was in the best shape of my life, with a level of muscle tone I may never again hope to be able to re-achieve. I was meditating and I spent the beginning of this all wondering if it was my chakras being out of balance or something. Maybe my history of sexual abuse as a kid was coming back around to re-victimize yet me another time. Son of a bitch. I meditated on forgiveness and trying to balance out my spiritual vibrations. If I forgave harder, maybe my soul would stop wanting me to hurt physically.
But, I got sicker. I guess I wanted it; I was “asking for it.”
Three summers, this will be, three summers since I was able to have one day without feeling pain in my body. Happy fucking summer solstice, guys. I can barely remember what it was like to not need to take something for pain so I could go out and dance. Middle fingers extended to all of those people who suggested I need to push through it and exercise more and that will help me. Seriously, fuck you guys. The funny part is I loved exercise, and love the high it gives me. But it’s excruciating and takes me days to bounce back from physical exertion. Excuses, excuses, right? I would like to lay a dagger into your side and see how many miles you can run. Email me and we can set up something.
I truly do appreciate all of the suggestions on supplements and THC based remedies. I do not doubt that infusing my body with THC oil would make me feel better, not a bit. But it’s economically not an option, unfortunately, as bullshit as that may be. I am not in a financial or legal position to cook up a pound of weed. We can debate how screwed up that is until we are blue in the face but it remains my position. And I am afraid to mix in more chemistry in my body, in terms of supplements, until I know what is really going on. I don’t want to confuse things more, before I find an answer. I think that makes sense.
“Victim blaming” is a buzzword phrase we hear in society all the time. Generally it relates to rapes – yes she was gang raped at a frat party, but she was drunk and wearing this little dress, so we all mouth these platitudes of how wrong rape is, but goddamn, what self-respecting girl goes and gets hammered in a mini skirt at a frat party without expecting to be raped? She brought it on herself. Not officially, maybe, but this is the truth in most people’s minds when these things are in the news and we all talk about it over coffee in the relative safety of our homes or jobs and all of our careful choices. Not often do we contemplate the how or the why or how a group of young men feel ok about taking turns penetrating an intoxicated woman’s various orfices in a team effort. The seedy underbelly of humanity that no one enjoys examining… the idea that many people will see another human vulnerable, and hurt them instead of help them. So instead it is about how she should have made a better choice, well, then, they would not have been compelled to brutalize her.
I have felt victim blamed many times in my struggle with my health. It gets worse the more fruitless my search for answers becomes. The lack of a definitive diagnosis so far seems to justify the thinking that this is on me, that, by living my life in a way that is basically the same as most other people, it is somehow irrational for me to expect to feel about as well as most others. This must be something that has sprung from my poor choices, physically, mentally, energetically, spiritually. The implication of this is the idea that, when people do not live life in the right way, they will experience pain, unhappiness, and illness. To an extent, of course, this IS true. If you live hard and rough, don’t eat right, etc., yeah, you are going to suffer consequences physically. But what about all of the people who live within reasonable bounds and still get sick?
To me, I see the mentality of victim blaming to be the result of fear and good intentions, in a way. People want to believe they are safe, and so are their loved ones. The people who are sick are sick because they made the wrong choices, they did the wrong things, and now they are paying a fair penalty for it. It’s sad but it’s fair, and makes sense.
How many of us see the morbidly obese man or woman on the scooter at Walmart and shake our heads in disgust? I think we all have. You tell yourself, “Get up and walk, for fuck’s sake. No wonder you are fat and can’t walk around. You are lazy and disgusting trash. Now get the fuck out of my way. I need to find the mayo.” None of us know this person’s story or medical history, generally, and the one we patch together in our minds is a mosaic of assumptions. This is socially acceptable victim blaming. The purpose of this is to safely place ourselves and loved ones on the other side of that dividing line – If I make better choices, I will not be the one in the scooter at Walmart. And it is largely a logical point. Take care of yourself and odds are you will be healthier. But what if it doesn’t work that way, and one day, after making what you thought were mostly the right choices, you find yourself sick and in pain? And then you are the one in the scooter, enduring the haughty glances?
Welcome to my neighborhood.
It stands to reason that we must always try our best. We should definitely use the knowledge we have acquired about the human body and health and safety to maximize our lives the in the best way we can, as much as we are able to. But we must never assume that by doing these things that we are able to effectively circumvent any negative outcomes. This is simply not true. And when we come across people who are in the midst of these personal horrors, no matter how tempted we are to blame as a means of separating ourselves from the same fate, we must stop ourselves. Being alive is being vulnerable. We all have a death sentence and we all are eventually going to face some trouble or another. I am so sorry to tell you this, but even if you eat “clean,” live “clean,” meditate, spend time in nature, pierce the veil or what-not, you can still get sick. You can still acquire health conditions and pain and maybe even die from it. Sometimes a cell just goes rogue. Sometimes a blood clot explodes your brain, out of nowhere. No matter how healthy you may live, sorry, but you are dying.
This is my battle cry. Sorry, not sorry.
All of the disapproval, David Avocado Wolfe links, and judgement in the world cannot save you from this fate. Sooner or later, you are dead meat, as am I. So, forgive me if I seem flip and dismissive sometimes. I spent a lot of time trying to lead that clean and pure life and I still got sick. And now, in between shitty days and doctors and sometimes feeling sad for all I have lost, I try to enjoy myself as much as I can. It sometimes comes in the form of fruity smelling, chemically based lotions from Bath & Body Works, or a nice gluten-filled IPA beer, or, sometimes, a Big Mac (GASP). I truly have no idea why my hair is falling out and has been for the past several months and why I feel like I have an infected wound in my torso, or why almost everything I eat makes me want to vomit. I have to summon the hope in myself that maybe this will someday improve and keep reading, keeping feeling and thinking, keep trying to get to the bottom of it.
I don’t need people talking to me like I have no health literacy, have no self-awareness, or like I have no grasp on how to live a healthy life. I don’t need medical or nutritional or spiritual advice from my friends and family, unless I ask specifically for it. Sorry but I wish you all would trust me that I am smart and open-minded and I am working on it in my way. Don’t make me explain this all to you as a means of ending a hurtful conversation. Please don’t hate me or yell at me for telling you I need this. I need love and empathy and I need understanding. Don’t blame me because you are afraid of my fate becoming yours. Blaming me will not keep you safe. Sick people seem to be a walking manifestation of the vulnerabilities that come from having a human form but it doesn’t make it right to victim blame us. Life is scary. We can do better by being empathetic and kind to one another instead of judging and preaching. Yeah, maybe it is scary and it is tempting to believe that you hold the answers to how to make it end, but odds are, you don’t. Stop bitching at me, and give me a fucking hug. We are all in this fight for our lives together, aren’t we? Bring it in, my friend.
I Wanted To Tell You
You sat on my front porch, thin and clenched arms and tight shoulders, body language of a person who feels the need for protection. You smiled, guardedly, at me when I stepped outside to say hello. It was warm and sunny out, but you sat as though you were cold, inner arms and wrists pressed tight against yourself. I wondered if you were hiding scars or fresh cuts. I had heard through the line of family gossip that you were doing that recently, self-harming.
Back when I was your age…
Last time I saw you, you were still a little girl. It was at a birthday party, I believe, maybe it was yours even. I had gone with my parents to your house that day, the one you lived at with your mom and dad. Things seemed normal enough back then. Your mom and dad had been married for years then and you guys were a family. You were short and your hair was in spiraled ringlets. You didn’t seem so worried or closed off back then, just a goofy and slightly obnoxious kid. This must have been only like 5 years ago. So much has changed since then.
You are a member of that club of people who have lost a loved one to narcotic addiction, “lost” in the sense that they became inaccessible from it, not dead, but still gone. This type of loss is debatably as bad or maybe worse than putting your loved one in a box in the ground, because they are still around. They still can talk to you and invoke your love when you see them, but it is not really them standing there. I have one of those too. I love her but I know every word she says to me is a lie and an angle and so I have cut her out in what seems to be a cold manner. It’s not. I think of her every day and I can already feel the flood of regrets that will hit when I get the news one day, that she is gone, for real now. I miss her.
Your parents drifted apart shortly after this gathering and your mom drifted to drug abuse. Your family went from a fairly traditional structure to a broken home, and over these past few years, I hear stories about you and all the bad you are getting into. As I walk out onto the porch to say hello, these things cross my mind. I already have hid my own medication bottles in the house because I don’t want any problems. My own pills, my own possible path to addiction. I hope every day, in my own health issues that I too do not lose myself to addiction. I hear that is how it begins for many people.
You don’t have the energy of a bad kid. I don’t think you are, although I believe you can find your share of trouble and I wonder what kind of choices you will make in the near future. Your eyes are not those of a predator. Your eyes are those of the prey, if anything, and I can sense that the bad things you do come from a need for survival, protection, and self-soothing. Who else could do that for you? It seems like no one has cared how you have been feeling for a long time. Like they hadn’t bothered to take notice.
There are so many things I wanted to tell you but knew it wasn’t my place. I feared that if I tried, your need would suck me dry, from my soul to the marrow of my bones. I realize this is some kind of failure on my part too. I’m sorry. Add me to the list of people who have failed you.
I wanted to infuse into your mind something like Cliff Notes for loving yourself, on how to forgive your parents, and how to realize you are not to blame for what happened. It took me years and years to understand that my parents were flawed people and that their shortcomings did not have to be the heart of my own life story, and the road to that realization was devastating and confusing. But it was also freeing because it was when I realized that their problems were not my fault. How could I make you understand that in an hour, one sunny afternoon on my porch? I couldn’t. I believe this is where people go wrong with their attempts to give advice or emulate information. They fail to understand the true scope of their mission. It’s about them and their need. They are too pleased with hearing their voice spreading the word to realize it will never sink in unless dispensed in exactly the right manner at the right time. I didn’t want to vomit my life lessons up at you, cloaked in the guise of helping you, when it was really a way to ease myself somehow. That’s not fair.
We talked about menial things and made jokes. You drank your Mountain Dew and told me how you can’t wait to get your face pierced in many places and you bemoaned your acne and how ugly you think you are. I wanted to tell you that you don’t have to have a perfect beautiful face to be worthy, nor must you adorn what you do have with piercings and tattoos to somehow make it more acceptable, which is what you seemed to be saying between the sentences. And anyway, your face is fine, and only a small part of who you are. But I didn’t.
Sweet, dear girl, who I am too afraid to get too close to for fear of your impending catastrophes, I know I failed you a couple weeks ago. It’s selfish that I can’t risk getting involved in the car accident type of drama that comes from involvement with drug addicts or their forgotten children. It’s not enough that I am sorry, but I am. I am so sorry I am afraid to reach out to you because I think you require it.
Your parents’ stories are part of yours, but they are not the sum of your story. You can have a totally different life in a few years. If you love yourself and understand that you can forgive yourself, you can have a different life, a better one. But isn’t it hard to love yourself when one of your parents has turned away from being your parent in order to be a more effective drug addict? How do you reconcile within yourself that it is not your fault that your mom left your family in order to chase addiction to drugs and terrible people affiliated with them? I can’t even imagine trying to do that, to be honest. Despite my mom’s flaws and mistakes, I always knew she loved me. So I don’t even know.
That day, you said your dream is to get a good job and make money so you could help your mom. You said that you knew you couldn’t ever give her cash because she would use it to get high, but you dreamed that someday you could buy her things to take care of her, get her in a house, make sure she is ok and safe and has the things she needs to live. File that under “Truths That Break Hearts.” You are not yet old enough to drive but you know this lesson already, that a junkie will put all resources to feed their addictions. This has remained with me for the past weeks, since that day. It has troubled me quietly. I imagine what it is like to live with that being the thought in your mind daily, the foundation of your goals and dreams. You want to keep your mom ok but in the hope that with enough love and happiness, the addiction will wither and die eventually. I think this is the end you want to see. I know that it is an unlikely conclusion.
You are better than what your story has been. You can do amazing things with your life. You can take your pain and you can save someone, you can be a light in the darkness for another lost soul. Your life is not over yet. If you can find it in yourself to love you, and to believe you deserve more, you can have it. It will be hard but you can make this happen. You never deserved to be a throw-away. Ever. No kid deserves that, but it happens, a lot. You are not definitely doomed to following the path your mother blazed for you. You can blaze your own.
These are the things I was dying to tell you when I saw you last. But I sensed that it wasn’t my place, that the words would either alienate, or reveal me as the confused and duct-taped soul my life has turned me into over these years. I am no fucking beacon in the dark either, my dear. But I have had some shattering experiences too, and I still feel it within myself to love and forgive, and progress. I want this for you more than anything else. Faith, resilience. In evolution, the trait which determines a species’ ability to survive and evolve is the ability to adapt to difficulty. That is the bottom line. You don’t need an amazing lineage or a perfect face or body or soul. You need to adapt and overcome, and you can. This is what I should have said. Maybe someday, it will seem right to say these things, and it will sink in, or maybe you are going to find these answers in your time.
I’m sorry for my polite small talk and my light laughter that day. I was trying to mind my place. I was afraid to be honest. I have been thinking about you since. I truly hope to hear things about you succeeding in life as the years go on. I love a good comeback.
I don’t speak with you often, if at all. I have been living under the assumption that if you are really out there (and I don’t exactly subscribe to that view, to be honest), you don’t want me spending my time here being fixated on you and our relationship. That seems to be the hallmark of most unhealthy relationships, doesn’t it? If I was always supposed to be under your metaphorical wing, then why would I have been born here, so far from “home”? I am a mother and having created a couple of my own humans, my dream for them is that they grow to be self-sufficient and independent people. I want them to always feel my love and support, but I want them to believe in themselves, and to learn to solve their own problems. This has been my struggle to accept the dogmatic nature of the relationship many of your believers seem to have with you.
I remember when I was very young and in Catholic school, I used to catch myself in a panic, thinking, “Oh, no! I just was forgetting about God and Jesus!” I had heard that our relationship, in order to be as you would wish, required my near-constant exaltation and glorification of you and your son. But this sounded bogus to me then and it does now. I know those priests and nuns are supposed to be in closer touch with you, but it has never rang true to me. Sorry. Or, if it is the way it is supposed to be, maybe you have some issues and it is better that I do my own thing. Just because you may be in some position of authority, it doesn’t mean I must participate is some sort of weird and unhealthy attachment situation. If you are mad about that, maybe you should work on it. Because real love allows freedom.
So I decided if there was or was not a God out there, observing and existing, that my best bet either way was to try to just do my best. I spent a lot of time and effort to get right with myself and the people in my life – and believe me, that required a lot of effort and I think I have done ok at it. I have definitely made mistakes and errors and have not always been proud of myself. But I have worked hard and I am proud of it. I have felt more at peace with my existence here since then. I have put effort into trying to spread happiness and peace when I could. I help people if I can, and if I can’t, I still try to love them. I thought maybe getting to that point was my struggle in life, and once I was able to get a handle on my mental status and state of soul somewhat, I felt like I did well. Like you would approve somehow.
Then my body started to give me problems. I began to hurt and feel sick all the time. Despite pursuing medical help for three years now, going through several diet changes, supplements, medications, meditations and yoga classes, self-help books, doctors, mistaken diagnoses, procedures, and surgeries, I am still at this point in the same exact situation. This is what brings me to write you this letter today.
I have made great effort to have a positive mindset about what I have been going through. I can actually see many wonderful things that have come from this all. I have met some amazing people and I have noticed my patience, gratitude, and compassion deepening as I have struggled to come to grips with the pain and uncertainty. Yes, I have had dark times and anger and fear and grappled with those feelings. Sometimes I have been more successful at it and other times, less, but I have persisted in living through it all, and I am proud of it. I like to think it has even been good for my kids, because I have tried to use it as an opportunity to teach them about perseverance through difficulty, as it has taught me. Despite being apparently unwell, I managed to move myself into a better life situation in some great ways. I have accomplished some things I never thought I could.
I feel myself turning a dark corner recently, though, God. Three years of dead ends as I get worse and worse are starting to take the fight out of me. I miss eating without feeling sick and pained. I miss laughing hard without having to stop because the stabbing pain it causes me. Despite repeating to myself daily – it could be worse, others have it so much worse – I am starting to tire of this. I am losing hope. This is why I am writing to you, the quite probably non-existent deity who civilizations have perished in the name of, the supposed benevolent father of all that exists, yet lets kids starve and live torturous lives, the one who is said to have created this human race that insistently inflicts cruelty and pain upon one another. Let’s call it what it is. This letter is a wish on a star, focused at a light so far away, it may no longer exist as I stand and stare at it. It’s most likely a waste of time besides a self-indulgent practice in releasing some of my sorrow and grief. But it is all I can do, so it is what I will have to settle for.
I am so grateful for my life. Immensely, ridiculously. Life is glaringly, breathtakingly beautiful. Despite the sorrows that exist alongside the love, I love being here. It’s a gift. I hear stories and meet people all the time who show me this is truth. I have a family and I love them more than words could ever articulate. Every day, there is something interesting, amusing, intriguing, and I truly look forward to what’s to come. But my pain and fear are getting larger than that and I need help. I know you never have owed me a damn thing. I don’t even believe in you, yet I write this letter. I am in pain. I have made efforts to help myself, because, as I stated above, I believe in being independent and self-sufficient. But it hasn’t helped, and my heart aches, literally and metaphorically.
We are coming to that point – shit, or get off the pot. I can’t keep up with this suffering in uncertainty. I have found myself thinking that a bad prognosis would at this point be better than none. I suppose that is not true, but it shows where I am at. I have tried so hard. My hope is gone and it’s making me want to give up fighting. In a last ditch attempt, here I find myself, asking God or the universe or whatever for one wish – hope. Please give me a reason to hope that this is not going to be the rest of my life. Or that if it is, that I may at least have some kind of understanding as to why. I think that as someone who has tried hard to bring good to the world when I can that I am worth this, and this is why I ask. Really, I think most people (who do not hurt others horribly on purpose) deserve what I am asking. Sometimes I make fun wishes for things and they actually come true – bags of fake flowers, apple sparkling water, hell, I even got a newer car only a week after I wished for it to happen last year. So I figured what can it hurt to ask. Here I am, God, tossing pennies into the well, wishing on stars that are already several moments in the past. Screaming into the abyss. Please hear me out. I will be worth it. I think I can do good in the world. Let me be here and be ok and I will. I swear.