Incurable

                                            ***Potential Trigger Warning***

Friday night, I stupidly read my new diagnosis for the first time. And then I sat here in tears. The old diagnosis, which I’ve had for a long time, is clearly nowhere near as serious as the new one. My doctor isn’t even sure how it ever even fit because he doesn’t see it, and I do think it’s a case of having fresh eyes and a fresh perspective, as well. He did NOT try to box me in, but he answered me because I asked. I needed to know what the hell this was.

The new diagnosis basically states that nearly 60% of sufferers, or more, as it ranges from country-to-country, die by suicide, regardless of age. I was stunned into terrified silence.

I have always said I didn’t want to be a statistic, but reading the documentation; I feel like one.

As I stated previously, there are no treatment options left. I can wait ten years and hope a medication is approved by the FDA, but mostly, I am on my own. I cannot fathom ten more minutes like this, leave alone ten years, or longer. Hope is kind of futile at this point for me.

There’s a person in my life (heretofore to be referred to as “The Idiot”) who cannot think about anything but the future. I suggested they take things one day at a time during a stressful period, so as to help them help themselves focus, and they told me their “brain doesn’t work that way. That they must constantly look ten, twenty, and thirty years ahead”. I was astounded by the insanity of that. Especially knowing that there is a strong possibility they might not live that long. I take everything one hour at a time. It helps keep me focused. It keeps me in the moment, because I don’t have a crystal ball and quite frankly, I am not looking that far ahead. Nor do I care to do so. For me, life just doesn’t have that level of longevity any more. Truth be told, it never did. I always knew that.

There’s something very difficult, and exceptionally disheartening, about reading something on paper and realizing that every hope and dream you’ve ever had has been impossible to achieve because it’s likely never been meant to be. All the things you’ve wanted for yourself aren’t going to happen because something serious is interfering with all of it. It’s NOT you, it’s an incurable illness you never asked for and it’s destroyed your life immeasurably.

Thus far, I’ve only managed to tell two friends. One told me I needed to fight so I could stick around and “help keep her sane”. She means well, but that wasn’t the answer I needed to hear. I intentionally withheld the info from someone who I am afraid will be triggered by this. She has been through enough and I cannot be responsible for my health affecting hers. Other people might be triggered by this information, so while I am not disclosing what the actual diagnosis is, I am telling each of them in my own way.

I will not be discussing this diagnosis with close family members. I know that none of them care. I have slowly started to see their selfish, self-absorbed, self-righteous natures and I find it utterly despicable. I am grateful that I do not resemble a single member of my family and that we possess almost none of the same character traits. They live on their own planets, and I live in reality.

It hurts me deeply that out of everyone in my family, I would be the one afflicted like this while everyone else is allowed to live a normal life, or as close to a normal life as possible. It feels like the cruelest curse in the world. That’s not jealousy talking; that’s honesty. One illness is enough of a burden, but for me to have spent the majority of my life suffering is pure evil. To have to battle all of this alone makes it so much worse.

I have chosen to take a pass on all things temporary. I don’t need that in my life. If someone cannot be permanent or semi-permanent, then I don’t need them right now. I need solid support all across the board. I don’t have time for games or bullshit. I will be informing my doctor of that before he leaves. He can pass that message on because I know after we talk, he’s going to be very concerned. I don’t care how I sound or come off this time because I’m not here to worry about his feelings. He can contact my primary if he’s concerned, or whomever, but that isn’t going to make a difference at this point. I refuse to see the doctor he wants me to see. I’ve had terrible experiences with certain types of physicians and while this doctor might be wonderful, I don’t have any trust to offer this person. I will look for someone else when I’m ready. There’s a six month wait for anyone permanent, so I am going to inform the “temp” when she calls me that until she finds someone permanent, I am not interested. I cannot sit with a temporary person and build anything with them. That’s not how I operate. It’s an absolute waste of time. I’d rather talk to Cat and Kitten, both of whom pretty much ignore me these days unless the treat bag shakes or they hear me in the kitchen and think food might be involved. I could leave for six months, they wouldn’t notice, so long as they were fed twice a day.

I don’t think anyone cares to notice how unsupportive they are being. If you’re a shiny, happy person, you want to surround yourself with others like you. You don’t want to delve into the darkness and look deeply at someone with depth. That’s fine. I am better off without your bullshit. What you send out into the world comes back to you threefold. I listen to people and I give with my whole heart. I care, even when no one else bothers to do so. Faced with something that cannot be cured or fixed in any way, I am able to fully see how cruel and hateful people really are. And I am closing ranks in terms of my friendships and the people I consider to be anything in my life at this moment. I cannot imagine not reaching out to someone and offering support, but as I have noticed, people truly DO live on their own planets. I am walking around with the pin from everyone’s hand grenade. They just don’t know it yet.

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For the record: I’m not stupid, or blind. I noticed the drop in subscribers the second I was super honest in my last few posts. When am I NOT honest? I’m not going to apologize to ANYONE because there IS a trigger warning for those who cannot handle anything too deep. I get it; we all have our issues, which is precisely why there was a warning. If you see a trigger warning, STOP READING. Come back when I’m discussing something funny and lighthearted. In all fairness, it was the first time I’d ever used a trigger warning in four years, so please, give me a break. This is MY safe space and I am going to be as honest as necessary here. You can stick with me or you can unfollow or unsubscribe. I’m not going to chase you down the street. I’m not desperate. I know who my readers are.

For every two people that disappear, twenty more show up and thank me for being honest and sharing my story so that they don’t feel ashamed in sharing theirs. I have received more love from Twitter followers than from any other social media platform I use.

I’m going to keep being me. I’m going to keep advocating to the best of my ability for change and I am going to keep speaking my truth and telling my story. I’m not going to allow others to stigmatize my pain or what I have been through. You can read my work, but ultimately, you don’t know me. You know a small percentage of what I share, but the people who’ve been with me for years and years, those are the people who know just how real I am. The people who’ve met me and spent time with me know who I am. The people who text me daily know who I am. The people who can call me at three a.m. for anything know who I am. The select few who get to share certain aspects of my life are the people who have made an effort to be a real friend to me, and for that, I’ll always be grateful.

You can sit and judge me ’til kingdom come for being honest, but the fact of the matter is, you have NO fucking idea what it takes for me to get out of bed each day, so please, judge yourself first. No matter what I face, you’re probably not as strong as me. I’m not ashamed of my reality, and I won’t allow anyone to make me feel bad for things outside of my control.

copyright © 2017 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

Focus

focus

Today, I am too tired and way too sick to focus on anything. This migraine is a nightmare, made worse by lawnmowers, leaf blowers, trimmers, motorcycles, music, dogs barking, the nauseating heat, and anyone breathing or asking me stupid questions. Pretty much everything smells disgusting to me, except for essential oils and my perfume. And aren’t I lucky that it’s going to be hot like this for the next three days?! UGH! If I can force myself out tomorrow, I am only going out for cat food and toilet paper. That is sad, but it is a fact. I was going to try to do it today, but I’m in no condition to walk from one room to the next, really. Not without assistance. And quite frankly, I have the most useless cats on the planet. 😦 They only want me to feed them. They’ve dispensed with feigning love or interest in my suffering. They sleep in separate rooms, spend little to no time with me, but become obsessed with me when they think they should be fed (If this is what marriage is like, I plan on remaining sans ring and paperwork.). I’ve never felt more unappreciated by creatures I not only rescued, but loved and raised.

To add insult to injury, this is NOT how I want to be spending my weekends; sick in bed, unable to sleep or function. 😦 I’m SO fed up. I have plans next weekend, so even if I do feel like crap, I’m going. Besides, it’s the only thing I have to look forward to for the rest of the year, based on my current calculations.

I hope everyone is having a good weekend!

Scheduling Conflicts

When you suffer from any form of chronic illness, you can choose, or not choose, to see your life as a bunch of doctor’s appointments. I try not to, but lately…

Without insurance, I didn’t have to think about it. I only went when I had no other choice, and there are doctors I’m still paying off for the few emergencies/scares I did have. With insurance, I’m in high demand. It’s almost laughable. You get told how long the wait will be, only to have someone call and say “The doctor can see you tomorrow at three.” Good for the doctor, but I can’t make it because you didn’t even ask if I was available! It’s like having to turn down dates you’re not enthused about.

Tomorrow afternoon I have an appointment in Boston that I hope goes well. My conformation call is supposed to come in tonight. I still have lab work I’ve got to get done ASAP, an appointment to reschedule once the lab work comes back, and an appointment at the end of next month to “look forward to”. I have to call the neurologist’s office back, seeing as how I missed their call earlier today.

Going into appointments with new doctors is basically a meeting. You give a rundown of your medical history and then they give you their feedback. I’m not even certain I want anyone’s feedback at the moment, but sadly, I need it. Even though they will, in all likelihood, go over any notes from my previous doctors, they’re each going to make their own assessments. My new doctor said “Let’s start at square one and find out what’s wrong.” She even said “We’ll figure this out together.” I was speechless, because up until this point, I’ve received a lot of dismissal from the medical community.

I’ve done the guinea pig stage and I’d like to not return to it, and yet, I’ve agreed to lab work and will soon have to agree to a gamut of tests. MRIs, cat scans, x-rays, and G-d only knows what else some of these doctors will come up with. I honestly just want to write out a document about what I will and won’t agree to; “Here are my medical hard and soft limits.” (I’m being sarcastic.) However, I do feel like I’m agreeing to an alien probe. 😦

When my new primary care physician’s office did intake they asked me for an emergency contact. I responded that I don’t have one. It makes me sad, but it’s the truth. Yes, there are a few people I could ask, but I don’t trust them. I don’t actually trust anyone, except myself. Not when it pertains to medical decisions. In a worst case scenario, I’m pretty sure most of my family would pull the plug and then disappear to make sure no one ended up responsible for my funeral expenses. I’ve seen this happen in other families. A close family friend passed away. It took days for someone to find her, which is truly heartbreaking to me. Her cousin, with whom she was close to, identified her, but after that, the extremely rich family she came from wanted no part in arranging, or paying, for her funeral. The Jewish community stepped up and made sure she was given a proper service. It was the saddest thing I’d ever heard, and I’ve probably heard it all.

In my defense, I’ve decided to establish a living will and submit it to the local courthouse and each of my physicians. I can’t have people thinking they can make decisions for me when they would never be able to tell someone what my eye color is, or my blood type. It’s difficult, knowing I can’t really turn to anyone about this. My cousin did offer, but honestly, I do not think she is capable of making informed decisions on my behalf. She’s a wonderful person, but when it comes to things like this, you have to be able to act swiftly in the best interest of the other person. She isn’t capable of doing that, so why burden her?

I’ve been experiencing blackouts more and more these past few weeks. Getting over being sick (according to my doctor, the infections are gone and my lungs are good, but it’ll be a while until the cough fully goes away, I can no longer blame it on being sick or being exhausted, or the side effects of my medication; this is happening, this is real, and this is scary. I haven’t talked about it with anyone, not really. I’ve talked it with all of you. When I did tell someone about it and tried explaining that 2-6 hours of my life are simply erased most days, they started spouting off potential reasons for it, but there was no care or concern conveyed to me. I’d prefer to hear the neurologist tell me what they are, or aren’t. In fact, I just Googled their office and I’m very impressed by what their specialties are. They do most of the tests on-site, which is such a relief.

Navigating this shit alone is tough. It’s emotionally painful, but I have no choice. And I’m strong enough to deal with what the doctors have to say, even if I’m conflicted about certain things.

Overall, not being able to concentrate today on my novel-in-progress is upsetting. I decided that maybe I needed a break. After all, not many people reach the 600 page mark on a re-write. I should be proud of myself, but I’m not. I sit here, and I wonder “What the hell are you even doing?” and “Why do you bother?” Writing projects this big are, on occasion, mentally and emotionally overwhelming. If I trusted someone enough to talk about what my issues are, that would be great, but I don’t. So today, I feel stalled. I’m going to let it be, because what other choice do I really have?

Tomorrow is another day, and hopefully when I get home tomorrow night, I’ll have fresh material in my head and be able to add a few thousand words to my already insane word count.

In the meantime, I’m scheduled, conflicted, stressed, and would love a break.  I’ll get over it.

copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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Letting It Pass

People make an awful lot of assumptions when you keep the majority of your thoughts private. They desperately try to read your body language and facial expressions, but they don’t know what any of them mean, so again, they make assumptions. I’m not the kind of person anyone should be making assumptions about.

I have a very close-knit group of friends who I’d do anything for. I have a handful of family members I value, and sometimes even that is iffy. Beyond that, I keep things extremely quiet. It doesn’t mean I don’t think, feel, or love. It just means I keep things contained. My brother calls it “extreme cop face”. He will often joke that I’m working for the CIA because I keep my private life SO private, it’s basically a mystery. Growing up the way I did, I felt like I had to. It was a way of protecting myself. We all have coping mechanisms that, on occasion, follow us through life. It doesn’t mean they’re wrong or that you need to change, it’s simply how you keep yourself in check.

This is the second year in a row where I was invited to Passover functions. My entire life before this, I either spent the holiday with my parents and Grandmother, or I didn’t celebrate at all. I was sick in bed last year, so I did not attend anything. I’m not that far from it now, I’m in horrific agony, but this year I just flat-out said no. No to someone else’s friends, where I can’t go through the interrogation I know is coming, and no to my cousins, because I’m not schlepping thirty minutes away two nights in a row for something that isn’t all that important to me. Sad, but true. I love my cousin and I’d kill for him, but not enough to sit through something that is basically traumatic for me.

Because I said no, assumptions were made and accusations flew. I was accused of being “socially phobic”. Not true. I am not AFRAID of people. If I were, I’d never leave the fucking house or speak to anyone! I dislike people. I dislike inane conversation, things that do not matter to me, conversation I have no business taking part in, bullshit, falseness, disloyalty, petty, catty crap, and knowing in advance that I don’t belong. What smart person puts themselves into situations where they already know they do NOT belong?! I don’t. I have better things to do with my time. It’s valuable.

I am not one of those people that believes that good exists in everyone. I’m smarter than that. That’s like saying prisons aren’t full of murderers and rapists. Yeah, I bet they all have hearts of gold, too (Yes, I do enjoy my sarcasm.). If people want to meet me, they should be able to do so on comfortable terms. A holiday is not one of them. That’s my feeling on the subject. Besides, I lack the ability to pretend I’m enjoying myself when I am in pain, annoyed, or intolerant of those around me. I like so few people, it’s not even funny, but I am by no means phobic of others. I’ve made more new friends in the past year than I’ve made in the last ten. If I was indeed “socially phobic”, those friendships would never have made it as far as they have. Those I am now super-close with never would have gotten as close as they have, either. So let’s call it what it actually is: Socially selective. I’ve always been this way. I’ve always picked and chosen my friends because I am the type of person that doesn’t have to accept the crumbs of life. My mother always told me “Choose your friends wisely.” She was right. I’ve been burned by friends I did not choose, so there you go. I am socially selective. It’s not a fucking crime against humanity.

I don’t feel the need to attend every single thing I am invited to. Let’s face it; there aren’t a lot of things to begin with and sometimes, when I’m not sick, I just want peace and quiet to focus on the work I’m doing.

I have a religious function coming up in late June/early July that I will indeed attend, but I’ve known about it for months and that’s different than last-minute mentions. I have time between now and then to put an outfit together, and even if I feel like shit, drag myself because I promised my cousin I’d be there. It’s a special moment for him, and since I’m the only family he has here, I’ll go because he asked and because he told me how he felt about me living so close.

I have a friend coming to visit this summer, as well. We’re trying to plan a day or two where we can just hang out and have fun. I’d NEVER agree to being out in the sun during the summer for just anyone, so she was thrilled when I suggested we make solid plans. For me to know in advance that I have something to look forward to is really nice. But these are things with my peers. If I’m going out, I want to have fun. I don’t want to be pissed off, miserable, depressed, unhappy, in pain, or have my plans made for me by someone else. Life is short and I want to enjoy the time I spend and who I spend it with. I want to be able to be myself, knowing I’m not being judged. I want to be around people who appreciate and respect that I am imperfect, goofy, inappropriately hilarious, sarcastic, witty, smart, and that I don’t take crap from anyone. There’s a softer side to me, too, but very few people get to see her and that’s exactly how it should be. I believe in reserving pieces of myself for myself.

I can’t recall the last time someone asked me what I wanted to do instead of telling me what was being done and asking if I wanted to tag along. There’s a difference between the two, and for me, it’s an immense difference. If someone wants to spend time with me, it can’t be all about them. That’s not right, nor is it fair. If “going out” is going to leave me stressed, angry, in pain, or worse, all three, then I’m not going to engage. I’d gain more by staying home and learning something as opposed to making myself sick.

This year, I just need the holiday to pass. I am trying to focus on my health. I have a doctor’s appointment scheduled and I want to go into it with a list of issues to cover. I want to hit as many points as humanly possible because no one should have to suffer like this. I always tell other people to make lists before they go to the doctor, and I find myself doing that now, too. I know it will result in x-rays, lab work, MRIs, and a referral to a neurologist, but that’s better than nothing. I’d rather look forward to all of that as opposed to continuing to suffer. I can handle starting fresh, but I can’t handle the pain for another second. I shouldn’t be struggling to walk or feeling like someone has put rods in my spine. I am tired of feeling like I’ve been beaten or run over by a truck. I’m tired of looking at my back and seeing nothing but bruises. Hell, I’m tired of finding bruises on my body, period.

Not celebrating a crucial holiday has nothing to do with my faith. G-d knows who and what I am. I am imperfect. I pray. I hold doors for people. I let people ahead of me on line in stores. I give to charity and help people whenever I am able. I call people and check in to make sure they’re okay. I write letters, e-mails, and send cards. I try never to forget a birthday or an important moment in someone’s life. Celebrating a holiday doesn’t make you a good or bad person. Being emotionally present for people is more important to me. Not being cruel and hurtful is more important to me. Being able to look at myself in the mirror and know I do more right than wrong is more important to me.

I’ve said it before, but life is indeed short. I don’t get to spend a lot of it happy. Hell, I can’t remember the last time I was happy or what it felt like, but at the beginning and end of each day, at least I’m real. These things don’t have to be important to everyone, but they do have to be important to me.

Wishing everyone a Happy Passover and/or a lovely week ahead.

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copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.