Life, On Hold

I guess late Friday night has become my new “time to write”. I have no idea when that became a thing, but let’s roll with it, shall we?

My big accomplishment this week was talking to my insurance company and getting an emergency reinstatement, all thanks to someone who knew what she was doing and was the kindest person one could hope to speak with. The best part was, as she was helping me, saying “I don’t know why they needed address confirmation. You already confirmed it twice. And I’m not seeing where they sent you a letter, but apparently they wanted confirmation by June 13th. This makes no sense.” She then told me to call back Wednesday morning. After four hours of not being able to get through to anyone (I love being on hold for an hour and then being hung up on. T speak to a person once this week, it was a six-hour wait on hold, in total, and constantly calling back whenever I was hung up on.), I finally got confirmation through the automated system that I’m “active”. Yay! The downside is that I still have to call again to see if they will reactivate the “child company” before September 1st (I spoke with them, they told me their system might update next week, but there are no guarantees.). It’s still early in the month and there’s no legitimate reason I should have an issue. However, this does mean canceling the neuro follow-up without the “child company” to pay for it, which, lets face it, I had no belief in, any way. When a doctor is out of the room before you’ve finished speaking, it’s not a good sign for things to come. He still hasn’t called me back, still hasn’t squared away medicine or ANYTHING requiring prior authorization, and I don’t see the point in going in without knowing I’m covered for the visit and two, to discuss what? Would he even listen to me? That’s a twenty-minute waste of my time and I simply don’t have the patience for it this month. I’ll reschedule, and maybe between now and then, he can figure out how to get his shit together before I write a scathing review.

I rescheduled one of the appointments I wasn’t able to get into last Friday, but the person who scheduled it informed me I would require the doctor to “discharge me as her patient” in order to see someone else. I listened to the message and “Are you fucking kidding me?” is all I had to offer. I’m a PATIENT, not cattle, not a piece of property “owned” by the overlord. I feel like it would be hypocritical to see this doctor for thirty minutes and then say “Can you discharge me to another physician because, after the way you treated me when we first met, I cannot in good faith work with you moving forward.” Doing so could cut me off from much-needed medication, and I am already angry that she put me in a compromising position with my current primary care doctor, who surprisingly came through for me. And if you’re going to practice what you preach, it is hypocritical to sit with someone you already know isn’t going to work out, merely to get a month’s worth of medication. Plus, how long would I have to wait to see someone new? The whole thing stresses me out and makes me ill. These are things I will have to bring up at my appointment next week, which is also stressing me out.

Every aspect of my life is on hold. Finishing up online classes for a certification? On hold. Starting new classes for a new certification so I can begin a career I actually want to work in? On hold. Being able to get up each morning with zero pain? Probably never going to happen. The issue with suffering from any form of chronic pain is that, if you sign a pain contract, you can be tossed from any doctor’s office if, for example, you decide to use Kratom or CBD oil as an alternative because they might look for it in a drug test. The pain I am in is so bad, all I want to do is go to the emergency room and scream until someone helps me. However, no one wants that put into their chart as “drug-seeking behavior”. I’ve never “sought drugs” in my entire life. The only addiction I’ve ever had in my life was to Polar Seltzer. I’m drinking my first bottle in months because I went off of medication based on sheer forgetfulness. In case you’re wondering, Toasted Coconut is as good as it sounds. 😉

I’m having trouble sleeping soundly. I’ve had a migraine every single day this month, and only had two migraine-free days all of last month. I’m hurting, stressed, frustrated, and fed up. I’d like to sleep soundly, wake up pain-free, and not have to struggle to push myself physically. I was hurting so bad last Sunday, I nearly passed out in public, but not before a woman who has never met me before stopped me at the grocery store to inform me I “look kinda pale”. I went into the stores’ restroom and took a look at my face. Nope, pale is my natural skin-tone. If you don’t know me and have no clue what I look like on any given day, it’s incredibly rude to approach a stranger and say “You look kinda pale.” I turned around and said “Are you being cute?” I was annoyed. It wasn’t the concern of someone stating I didn’t look well, it was something else, and quite frankly, combined with my eye makeup, I wouldn’t have approach ed me at all. The colors I’d used sort of made me look like a vampire. I didn’t notice it until after the fact and once I’ve finished with something like that, I am not taking it off and starting over.

I’m having terrible difficulties writing the things I want to write. After months of research and trying to get the ball rolling with an article revolving around chronic pain patients and the reduction of medicine we’re experiencing as a whole, I’ve had to focus more on my own health than I would normally be able to focus on a body of work. And since then, plenty of people have come forward and written things from their own perspectives. It sort of makes me wonder if I should bother at all, which bugs me, because I don’t like starting something I’ll never finish. It makes me feel like a fuck-up.

Yeah, I’m hard on myself. What might normally work for others in terms of decompressing only manages to stress me out more. I hate hearing these terms “breathing exercises” and “mindfulness”. It’s reached a point where I will throw something hard at you if you mention either. I cannot breathe past the pain I am in, so please spare me the nonsense. I’m plenty mindful, yet apparently not mindful enough for people who preach about it. And yeah, I lack the ability to “go with the flow” because the “flow” is monotonous and makes me want to walk in front of a truck.

No one wants to “exist” and wonder what their purpose is. People keep turning to me with “pain advocate” or “pain activist” issues and here’s the thing; I am having a hard enough time advocating for myself. For someone who has been told I am “always incredibly articulate”, I feel like an absolute moron trying to explain how badly I am suffering and how all I want is relief. I imagine this is what happens when your body is experiencing too much pain on a daily basis with no break. I have NEVER outright said to any doctor “Give me pain meds.” Never, and yet I feel distraught at the thought of being forced into a pain contract or worse, having a year-long (possibly longer) wait to get into any form of pain management. Pain management in Massachusetts is everything BUT pain medication. They will even prioritize surgery over managing your pain. If you will willingly implant a pain pump into my body, but are afraid to give me real medication in that pump, then there is no valid reason for me to put myself through surgery. I’ve never had surgery in my life. I still have both of my wisdom teeth, mostly because I’m stubborn. I know they will likely have to come out by the end of this year, and I’m kind of okay with that, but that is far less invasive than something being implanted into my body that may, or may not, work. See how stressful it all becomes when you think about it?

This is, by no means, the life I signed up for. I had dreams, goals, and things I wanted to achieve. And yet, as I sit here, my entire fucking life is on hold. I, for one, hate it.

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

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Medical Miracles For Michael

https://www.gofundme.com/getting-through-the-medical-hump

I will pretty much NEVER forget a single person who makes a contribution to helping my brother. My cousin was the first person to get the ball rolling. I don’t care if you’re family, a friend, or a perfect stranger, it will mean the absolute WORLD to me to keep my brother alive.

Our Grandfather died at 40 due to a massive heart attack. The advancements of modern medicine and surgery have done wonders for my brother, but he is far from out of the woods and may require additional surgery up the road. The medicine and co-pays on his most recent surgeries are slaughtering him. I am hoping to get some of his bills paid quickly and the rest I will negotiate with the various parties involved, but ultimately, even $5-$20 is a help to him.

I thank you in advance. And by all means, share it with people who you think can help him.

Today Doesn’t Feel Like A Monday

Hello everyone! I haven’t been around much of late, and for that I am sorry, even though I know apologies aren’t necessary.

I am dealing with a family crisis and quite frankly, I’ve lost my temper and I’m one of the most unpleasant people at the moment to deal with (not that I’m all that pleasant on other days ending in Y). I’m about 0.1 seconds from utterly snapping. I’d love to be able to blame that on PMS, but the truth is, my first reaction to things isn’t always the perfect reaction, which is why I like to step away from a lot of situations, if I can, before I react. When they say stress is the leading killer, whoever “they” are, they’re right. I thought I was going to have a stress-induced heart attack last night. 😦

After apologizing to the person I yelled at, I realized that I truly see the world differently than others. I’m not a “There are so many good people in the world.” kind of person. I don’t think I’ve ever looked at the world, even as a child, with that level of naiveté. I see evil walking around disguised as “people”, and on occasion you come across a few angels looking out for others, but on a whole, this world is not chock full of good in every direction one turns in. If it were merely me, I would keep on keeping on, but when it affects someone close to me; I go ape-shit.

For those who’ve asked: Yes, I did find my brother. He got in touch with me late Tuesday morning and explained what happened, as well as his nearly two-week absence. I would like to thank the Falls Township Police Department for their assistance and to the cop that assisted me personally, who was 100% nicer to me when I called to let him know I’d found my brother. His entire demeanor changed after that, and he told me to get in touch with him if I ever need anything in the future. That was a nice moment. Not many cops send you an e-mail and include all of their contact information in case you ever need something in the future. Major points were scored for that one.

On the downside, finding my brother “safe & sound”, sort of, didn’t even last a full three and a half days before something truly horrible happened, something I’ve been concerned about for months now. All I can do in this moment is be supportive and help him get medical care because his heart isn’t good, despite having had bypass surgery last year. He is in pre-kidney failure and requires a supplement to help it (I’m not 100% sure that even he knows what it does or doesn’t do. I just know that it’s expensive and he needs it.), and his insurance chose the absolute worst time to cut him off. He is now without much-needed medication (roughly 10-12 prescriptions that must be taken daily. He has already been without these drugs long enough for damage to re-occur.) that keep his heart functioning and other things at a normal rate. I have no idea when the insurance company will start paying for his care again. Because of this, I will be posting an online fundraiser ASAP for emergency assistance. Every penny will go towards his medication and doctors visits until he has insurance backing him again. Unfortunately, they’re not very speedy, it took several months for it to be processed last time, and despite reaching out to pharmaceutical companies and various charities, no one is willing to assist him with what he needs, mostly because, despite the older ones being generics, a lot of these medications add up. This is life or death. I don’t ask for myself, but I do ask that if you can help in any way, however large or small, it is going to someone who truly needs it. If the link doesn’t go up this week (My mind can barely concentrate on the paint on the wall, much less the logistics required for this sort of thing, so bear with me.) and you are able to contribute something immediately, I will provide you with the direct information if you leave a comment or e-mail me. If you require more information, just ask. I won’t violate his privacy, but I can elaborate for those who are afraid of being scammed (Unfortunately, this does happen and I am all too aware of it. I think that is disgusting, because so many people are truly in need. I’ve never understood the scamming mentality.). For my brother, I am willing to swallow my pride and ask for much-needed help.

And now, I am going to try catching some desperately needed rest because today really IS a Monday and I can’t afford to lay in bed all day. Naturally, I wish I had better things to say as well, but I’m doing my best.

I will be back soon, and hopefully get the fundraiser going the second my foggy brain allows it.

Best,

lisa-1

copyright © 2016 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

Patient X

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Patient X is being released into my care this evening after major surgery at the beginning of the month. Discharge was repeatedly delayed by post-op illness and absolute idiocy on the part of doctors arguing over proper procedure. It took them nearly a week to discover that he had not one, but two separate infections. Thank G-d for Infectious Disease Specialists who put their foot down. #Respect Of course, the fact that I called the head of the hospital and informed them that discharging a cardiac patient with an infection is grounds for a lawsuit might very well have secured his bed for an additional three days. For the record, I try never to use the word “lawsuit”, except when it pertains to protecting my family’s health, their rights, or rights in general that may be in a violation type of situation. I know people who throw the word around way too often for no reason. It shouldn’t be used lightly.

I’m nervous about taking care of him for eight weeks (twelve if there are any setbacks) while he isn’t allowed to drive or do much, except the most basic things. For the next two months, the heaviest thing he can lift is a gallon of milk. In 4-6 weeks, longer if insurance delays it, he is supposed to have a second procedure done to ensure that his heart returns to 100% in terms of function. It’s a procedure that should only take a few days. The surgeon informed me that one or more procedures may need to be re-done in 25 years. However, this surgery has given my brother a new lease on life. Never before this absolute wake-up call would he have agreed to quit smoking or make healthier choices in regard to his health. It is sad that it had to come to something so severe, but I am determined to do what I can to make sure he heals properly and adheres to this new “heart healthy” lifestyle. It’s a serious change, but if he wants to live longer than either of our parents did (the situations were, obviously, quite different), then he is going to have to do his level best to commit.

Open heart surgery is rough. I would not wish this on my worst enemy. Hearing him struggle to breathe, cough, and move makes me ill. Knowing that his vocal cords need additional time to heal, along with his heart and wounds, just plain saddens me. That a single soul would tell me to leave for my move and let him recover alone pisses me off. I thank G-d this happened when I was physically in a position to do something to help and was not hundreds or thousands of miles away. In a situation like this, you do not want to get the dreaded phone call. Every time the phone rings and it’s the hospital, I get ill. Once he is released to me as a “patient”, he probably won’t be too thrilled, but he has already said he’s just so happy to be alive that he doesn’t care what I say or do. We’ll see how long that lasts.

I am sure I will utterly lose my head when I find out the total of the roughly fifteen prescriptions he’s going to have to take, only some of which are for the next six months. His surgeon assured him that nearly everything was cheap because they’re generics, but someone ought to clue the doctor in that even Walmart has a list of medications that are on their list of drugs they’ll cover for $4-$10, based on the number of pills and how long it’s prescribed for, but that the others are nowhere near the word “cheap”. The cost of medication in this country is utterly insane, but it’s right up there with the cost of healthcare, one of the biggest rackets on the planet. There is no possible way not to get a headache dealing with the drama.

Over the weekend I received the first bill for two separate tests they ran when he was admitted last month. The physicians who billed will have to whistle Dixie while dead before they see a penny from me. Process that shit to the insurance company, don’t send it to a third-party who isn’t a legal guardian. I am not allowed to stress out Patient X, lest he tear something inside his chest, so I haven’t told him about the bill. I won’t be telling him about any that come. I’m just going to get on the phone quietly and handle what needs to be handled. If you hear about me on the news, don’t be surprised.

As of this evening I will start accepting all gifts of alcohol (or dark chocolate) because I am almost certain my new “water bottle” is going to have vodka in it the second he whines or complains about anything I do. He texted me this morning to make sure his ginger ale would be “ice cold” for his arrival. Tomorrow I get to make Jello and pudding, like a proper little Real Housewife from Hell. 😛 If I get hit by a vehicle this week, it may or may not have been of my own volition. On a good day, there’s only so much bullshit I can take. On a bad day, well, you don’t want to know what I’m like on a bad day. :/

In preparation for all the fun I’m about to have tonight, and in the weeks to follow, I may or may not attempt to drown myself in the shower. But first, I need to find Cat and Kitten and get some unconditional love. I open their cans; they know where their bread is buttered. LOL. Is it too late for a straitjacket?

copyright © 2015 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.

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