The Never-Ending Excitement

I swear, I’m radiating unhappiness.

Thursdays’ appointment made me feel like a fucking fraud. Despite the fact that I KNOW I suffer greatly, you cannot see anything I suffer from. It’s like being slapped in the face a bit. People can’t help but stare at you, because they’re questioning your validity of illness without knowing a single thing about you. I could almost hear people’s thoughts as they wondered why I was there. It’s very similar to when doctors tell me I’m “too young” for certain treatment methods or medications. They would have no problem if I were over 70, but anything under that is just plain “too young” for them to take me too seriously. I hate it.

In a room filled with wheelchairs, walkers, scooters, canes, oxygen tanks, etc., and being the youngest person there, not for the first time, I felt overwhelmed by other people’s pain. It makes you feel bad for asking for help, no matter how badly you need it. I definitely need it, or I wouldn’t have put myself through that.

My neurology appointment is set up for early June. I am both looking forward and not looking forward to it. I want results. I don’t want to play games. I don’t have the energy for the nonsense. Run tests, and tell me where we go from there. I don’t like to drag anything out. I’m concerned that new tests will show the progression of how bad things are. I am certain my MRIs and x-rays are going to show significant changes from the last time they were done. Between my spine and my brain, there’s no way it’s all going to look the same or report the same way. I am trying to be prepared, but mostly, I’d like someone to be here when I have to sit and cry over it. Ultimately, I likely won’t discuss what’s going on, unless it’s in an abstract way. I’ve only recently realized I’ve been doing that for years.

People assume that as a writer, my entire life is open for public consumption. It isn’t. I don’t even post my cats names on here, preferring to call them Cat and Kitten, instead It might seem silly that I don’t just declare them by name, but they’re very unique names (Everyone who meets them comments on this fact. I’m not a “Princess”, “Pearl”, “Muffin”, “Socks”, or “Mittens” kind of gal.), and they are special to me. In my life, when I do write directly about it, everyone has a nickname or a title, but I don’t give more than that. I learned early on in my career that you don’t put your business “out in the street”. The Internet is, at times, a vast gutter. There is both good and bad, as in all situations, but I do try to keep the personal as private as humanly possible. The few times I’ve opened up on a very personal level, I can say that I was met with disappointment, anger, and rudeness, even from people I deem close friends. No one needs that, so I keep the private stuff where it belongs.

In other situations, I am supremely open and honest about what I am going through. I guess in most respects, I prefer things to be one-on-one. If I say something, I say it in extreme confidence. It helps because if it is repeated, you absolutely know who you told, especially since I keep my circle small.

I’m proud of my accomplishments and what I put my name on, but when someone clicks LIKE on something particularly painful, it makes me wonder what the hell is so damn likable about anyone’s pain. I’d much prefer someone say “I can’t like this, but I understand how you feel.” or ANYTHING that is a little more concrete than clicking LIKE. I’ve told many people that I cannot “like” their torture and agony, but that I can support them for writing about it. They’ve always understood the difference.

So as I go to sleep tonight, questioning the never-ending excitement that my life is NOT, I’m going to think long and hard about what I will be writing, and saying, next.

Bright Blessings.


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

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.