I Don’t Have Time For This

“I am a migraine, that occasionally gets to be a human-being.”  😦

In preparation to meet with my new neurologist next month, I forwarded a copy of my current migraine report to myself so I can print it and bring it with me. In one month, which was recent, I counted thirty migraine days. That’s not just “chronic”; that’s unfair. No one should have to live like that.

When people see me pushing through my migraines by continuing to write, by going places (which isn’t often), by running errands, etc., they assume I’m okay. I’m NOT okay, but I have learned, in the nearly twenty years I’ve suffered from migraines, when I can push myself and when I cannot. I pay dearly for it, but I also think sometimes it’s unhealthy to be in your room 24/7, never leaving the house, never breathing fresh air, because while you’re suffering, life is also passing you by. I’ve lost an enormous chunk of my life being sick, and not just with migraines. It’s hard not to feel robbed at times.

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I wish I fully believed this. 

At a doctor’s appointment at the end of last month, I stupidly felt incredibly trusting of the new physician, and in the last six or seven minutes, he revealed he’d be leaving in six weeks. :0 I’ve never seen a doctor wince when he looked at me, but whatever my eyes or face did in that moment, and I’m not sure what either of them did because I tried to play it off with humor, he knew he was in deep trouble. I’ve had cheating boyfriends not look at me with that kind of pain on their face, so I automatically knew this was a good guy. Of course, I knew that the second our eyes met when I was being handed paperwork.

When I left his office that day, I sat outside for over forty-five minutes, contemplating the effort it took for me to get there in the first place. Physically, mentally, and emotionally; it was a LOT. The strength it took to open up and be comfortable with someone new was monumental. If I didn’t truly need to be there, I wouldn’t be. As I sat outside, I went through every emotional range you could think of. I nearly went back upstairs and told him off, except I actually like him, which is SO rare, I’d follow him to China. I understand that a lot of doctors have contracts and can’t take patients with them, but I have no intention of staying with this practice if I’m not going to be understood by the person who replaces him. If I’m not going to be treated with the same courtesy and respect, I’m out. I’ve dealt with this enough times to know that I don’t have to stick around if I’m not getting what I need out of the situation.

I can wait to see what he does, Google the new location and see if he accepts my insurance and make the switch if he does, but ultimately, I am going into my next appointment pretty fucking angry with him. It’s SO unprofessional to be seeing new patients 6-8 weeks before you leave. I know that wasn’t his call, but I still have the right to deem it unprofessional and to be pissed.

When I spoke with him on Monday to let him know that the medication he’d prescribed had affected me pretty badly, it just plain made me sad because we have this great rapport. I’ve searched FOREVER for a doctor that “gets it” and ultimately, gets me. I nearly cried when he said he was leaving, but I was wearing expensive mascara, so I forced myself to stop. I haven’t felt right since that day. Not mentally, not emotionally, and physically I’ve felt weakened and messy in the sense that I am slowed down from a physical perspective. 😦 It was like taking an emotionally draining beating, except the only physical interaction was a handshake. When was the last time a doctor met me and said it was a pleasure meeting me? A long time.

I’m both too young, and too old, not to mention far too smart, to place faith in people and be left hanging again and again. It was like being on an amazing date, but immediately learning something wasn’t right; you click, but you’re both going in opposite directions. That’s the best analogy I’ve got right now.

The relationship between doctor and patient is based on trust. If you cannot trust someone, then they cannot be your doctor. There are certain types of medicine where this is even more crucial because you have to communicate with your doctor. Consistency with the person you’re seeing is important, at least it is for me. I don’t want to build trust with someone and have to start over again. I’ve done it so many times already and I don’t want to do it again. This, in my mind, was the last time I planned on making an effort. I went into this new situation kicking and screaming. I tried talking myself out of the appointment the morning of, so clearly, I already sensed all was not right in Whoville. I don’t know if there’s still pieces of me left at ground zero, but I DO know I walked away a different person.

When he asked me to describe myself, I noticed that he disagreed with my assessment. He doesn’t think I’m a broken mess. He actually said “I can’t put you in a box because you don’t fit in any of the tiny boxes. I could, but it would be wrong, and that’s not fair to you.” I can’t tell you how long I’ve waited to hear a doctor say that to me, but it’s been the majority of my life. Someone more jaded would just check off the little boxes and send me on my way; passing me off to someone else to get me out of their office, instead of taking the time to truly help me. He not only wants to help me, he’s making an effort. But in doing so, he’s upsetting me because he won’t be there much longer, and ultimately, where the hell does that leave me?

Square one is not a fun place to be. I was back at square one when I showed up in his office. I kept my appointment, I filled out the insane paperwork, I sat with him for nearly an hour, and I haven’t been okay since.

When I see him next week, he’s going to get an earful. I’m putting it all down on paper so that I get it out of my system before he even says a word. It needs to be said, and I need the catharsis. He needs to know that by seeing me late in the game, it was a gross error in judgment. If I needed someone to care about me temporarily…well, I’ve got family for that. Quite frankly, I’m at the point where I prefer for my insurance to pay for people to care about me, as opposed to dealing with people who should care simply because it’s what you do.

The one diagnosis I did come away with was shocking. I knew I was experiencing PTSD, but C-PTSD, or Complex PTSD, is more common in military personnel returning from active combat. It is also prevalent in veterans. The discussion we had about trauma brought up a lot of things I thought I’d moved past. It also brought up a lot of things I thought I’d dealt with. This is precisely why I’ve felt worse since meeting with him. He picked at all of my old scars and opened them up. I’m slowly bleeding to death and it’s messing with my ability to function.

Reading, writing, watching TV, hell, watching sports; I’ve been unable to do a whole lot since that day. There have been days where I’ve barely been able to articulate how upset I am, except I’m incredibly contained most of the time because I’m very in my own head, so if you get me talking, I don’t always stop. On the plus side, no one disagrees with my thought process in terms of how I feel on this subject. I actually said that I’d be about 75% less forthcoming with a new doctor because I already feel like my trust is shattered. It’s an awful feeling. And yes, I pretty much have it in my mind that once he leaves, I will, too. I don’t foresee myself committing to someone new, not unless they make a damned good case in twenty minutes or less.

Ultimately, there aren’t a lot of medication options left for me, and unless you’re on medication, I don’t feel you actively need to be seeing specific types of doctors. I wouldn’t go to see a surgeon unless another doctor believed I might need to have surgery, was planning to have surgery, or was recovering from surgery. It’s all very common-sense based in my eyes. Either you need to be seeing someone, or you don’t. I certainly don’t want to waste my time if a doctor isn’t there for me. That’s not how the relationship works.

I keep saying “I don’t have time for this.”, because I don’t. Life is so fucking short. Your support systems, from personal to professional to medical, all need to be in sync with who you are as a person and what you need. If they’re not, you have to be honest with them. If you still don’t get what you need through that honesty, then yes, you must walk away. And sadly, you have to be okay in doing so. No matter how painful it is.

He may not agree with me, but I know what a broken mess looks and feels like. I may have walked into his office like I was going out on a date (That wasn’t my intent.), but that’s usually how I go to doctor’s appointments; slightly dressed up with makeup on. Someone told me last night that my face masks the pain I am in. I asked if that made me fake, and they said no, it’s just a point of pride for me. I feel like crap, but I don’t have to look like crap, too. So yes, I put forth effort into looking like a human-being, but by no means is it a “mask”. It’s not false.

A good doctor usually talks to me like a peer or colleague almost immediately, which he did. Technically, he and I ARE peers. I enjoy people who treat me like a person, with no judgment. They’re rare, but they exist.

A huge part of me doesn’t want to go back, but I said I would. He said he’d “do his homework” when we talked because he “really wants to help me”. He even said “Hey, read this book. You write, so I know you read.”, and thus far the book is fabulous. When was the last time I took a book recommendation from a guy? Roughly fifteen years ago. I did actually take a recommendation from someone else last year, but I will have to get the name of the book from him again because I didn’t get around to reading it after it sat for nearly two months. It was the subject matter though, not the guy. I adore him, but there is a time for specific subject matter and when you’re in the middle of writing something positive and happy, that’s probably NOT a good time to read something sad. The book was about the Holocaust, but I still can’t remember the name of it.

So, if I’m dark and crazy this month, you all know why now. Hell hath no fury like me pissed off at a doctor when I didn’t need to be. I actually think he’s a little afraid of me, so I hope he takes my outburst well because I don’t think I’ll be able to contain myself twice.

Wish me luck!

Have a great weekend, everyone! I’ll be back soon.

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

 

Pull The Trigger

Almost two weeks ago, after an appointment with the Certified Nurse Practitioner at my doctor’s office, I went into the afternoon with one thought in mind: What are my triggers? It began to nag at me, until a few things dawned on me.

I keep a food journal to track what I’m eating each day. I’ve done this for a little over a year now, mostly because I wondered if something I was eating was causing my migraines to become worse than they were prior to my move. After going over it repeatedly, I genuinely don’t think my diet is triggering me in terms of stress or my migraines. It’s simple, boring, repetitive, crazy healthy (for the most part), and I’d probably murder you for a Triple Classic with bacon and cheese from Wendy’s and a baked potato with extra sour cream if I went within a minute of the place. Notice I didn’t say a mile. I haven’t touched fast food in almost a year and a half. I catch myself missing it when I’m stressed, or a few days a month when I just NEED a change of pace.

The CNP was exceedingly clueless as to what is causing my blackouts. I would refrain from blonde jokes temporarily, but she opened the door wide open the following morning when she called and yelled at me about the medication that was prescribed to me after she’d left for the day. And by yell, I mean she has a very shrieky voice and it is offensive to my ears, especially when it goes up an octave and she’s actually yelling. She blew off my lab work like it was no big deal when I questioned it, thus leading me to wonder if she can read lab results because I can, and I’m not a medical professional. I questioned the issues because they’re exceedingly visible (Elevated white count, which is NOT uncommon in Fibromyalgia sufferers or in anyone with an autoimmune disease, except I never used either word in my visits to this doctor’s office. I knew my blood work would speak for itself.) and her answer was “Can you like pop in next week and re-do it?” (Said precisely like that.) Um, NO. I’ve got a hematoma that spans three fingers on the inside of my left forearm that IMMEDIATELY bruised. I hadn’t even left the office and it was BLUE, which never happens to me. I’ve applied Arnica gel to help speed up the healing, and it’s looking a lot better now. It went from looking like someone had taken a mallet to my arm, to looking like a trauma version of Saturn, to looking like a heart, and now that it’s almost gone, it’s just plain ugly.), but I’m not rushing back for blood work any time soon. If you aren’t concerned enough to call me about that, which my physician did NOT, then I’m not concerned enough to come running in. In fairness, my doctor should have looked at it and called me to go over it. That’s what every doctor should do if something doesn’t look right. I went in running a fever and that was also blown off like it was no big deal. “It must be because it’s a warm day.” No, that’s not it, USE YOUR BRAIN.

The entire appointment was useless. I didn’t need to come in to tell you I could fail a baseline test, or that my neurology appointment couldn’t be moved up. You didn’t “save me” a trip to the emergency room by having me come in to “assess the situation”. And for the record, they thought I’d come in because of my migraines, NOT because I’m blacking out and losing time almost daily. Why would I go to a primary care physician’s office over migraines?! I wouldn’t.

A smart person would have ordered an MRI or a CT scan ahead of my neuro appointment, just to be on the safe side, but this chick didn’t even have suggestions (Did you know CNPs earn roughly $98,000 a year when they are part of a medical practice? Factor that in and you’ll be able to tap into my disgust.). I was so distracted that I forgot to ask about new anti-nausea meds and a muscle relaxer. It only took three phone calls for that to get cleared up.

When she called to yell at me about the medicine, it was because, in her words, I should “only take the muscle relaxers at night”. I had to bite back the “Duh!” that I was thinking when what I almost said was “Chill, blondie! I wasn’t prescribed an entire bottle of them. I was prescribed fifteen pills.” I paid roughly .30 cents per pill because the doctor who wrote it (not mine) was afraid to give me a full prescription. That annoys me, because it’s more cost effective for me to have a prescription that is a month of medication, as opposed to a few days worth. The normal daily dose for this drug is 80 mgs. I was prescribed 10 mgs. One pill does NOTHING. Two is slightly helpful, but 30 mgs does the trick and helps all of the muscles in my body ease up a smidge. I am going to be extremely honest with my doctor about that when I call for a refill. I don’t particularly like the drug, but if it helps my muscles not be stiff when I wake up, then I’d prefer to stay on it until another doctor says otherwise.

The anti-nausea medicine is for twenty-one pills, which is a little more practical. The whole “passing the buck” onto the neurologist pisses me off. Implying that they could get me in sooner to see him was obviously not handled properly, if at all. The neurologists’ office told me when I got the appointment that this was the first opening available with any of their doctors. There were literally two times on the same day, and I chose the earlier of the two. I took what I could get. I know they’d contact patients if they had cancellations, but obviously, there’s no room. As a first-time appointment, I expected to wait. I’d rather wait and actually get the doctor’s full attention, as opposed to deal with a rushed physician who is completely overbooked.

In all of this craziness, I learned that my ultimate trigger isn’t something I’m eating, but an actual person. Anyone who seems to gain from your misery, pain, isolation, and fear that something is seriously wrong with you is just plain evil and is someone you should probably avoid. It’s not often I find myself hating people, but I realized I hate how I’m being treated. I hate how anyone can deny how horrible their treatment of me is, and in the classic deflection technique, tries to turn it back on me. That’s not love, it is hatred, and it is so palpable, it enrages me.

This person is the ultimate “self-harm”. Rarely is a kind word spoken to or about me, unless there’s an insult thrown into the mix. I’d elaborate, but it chaps my ass to the point where I just can’t. Repeating hateful things said about me that aren’t true is giving the other person credence. When you tell someone who is chronically ill, and has been for the majority of their life, that they “Don’t want to get well.” because they didn’t go running to pick up two prescriptions the second they were filled, or ask for someone else to pick them up, there’s not a whole that that you can say to that, is there? It’s a crock of shit. If a muscle relaxer and anti-nausea medication would cure and/or “heal” me, then I’d have been on both years ago. Is waiting 48-72 hours going to change anything? No. Not one bit. Those medications are not cures. They’re temporary solutions to long-term problems. They will not magically heal me.

When you genuinely care about a person, you don’t ever want to cause them harm with vicious, hateful words. But now I see what others have been trying to tell me for probably the past twenty years; this person doesn’t love me. Maybe they think they do, but when you love someone, you want what’s best for them. You can always say things without being cruel, hurtful, or harmful. If you can’t, there’s something wrong with you.

When you realize that a person in your life, however close or not, is a serious trigger for you, you need to be self-aware when you’re around them, especially if you’re left without a choice. I feel my best when I am completely away from my triggers, both human and otherwise, but I know that’s not always a possibility for everyone. Hell, it’s not a possibility for me at the moment, but at least I’ve fully identified the target and know how to deal with it.

The neutered, “I’ve been to therapy” Lisa would disengage, say nothing, and walk away, but would internally be enraged. However, I’ve decided that particular version of me isn’t acceptable in my daily life any more, whether I’m going to therapy or not, so I’ve decided to let the other person (and people) know that their mouth is a problem and that I expect them to keep it in check with me. Yes, they will likely slip up here and there, but it’s my duty to correct them immediately, or the issue will get bigger and continue to fester. It’s easier for me to say what needs to be said and shut it down, so I am able to let it go. Mostly because, I don’t think I’d be a very good inmate.

When coping with triggers, it’s important to first identify them. If you are able to write them down and nail them the first time you try, that’s good. If you need to nail them down in therapy, or over time, that’s good, too. It shows growth. It comes down to “What/who hurts me the most.” I see a lot of people mention family issues as major triggers, or their wife/husband/partners, friends, children, etc., and all of that is normal. You definitely want to write those down if they’re affecting you and find a way to turn it around, but also look at your past and present, as well. You might even want to look into future things you know will take place that are causing you some form of triggered pain.

Ultimately, we’re all different. I’m not Zen enough to ignore rudeness and insults that are blatant and feel personal. I can let a lot fly, but there are things I MUST call people on. And if I happen to remain silent about something, it will eventually come out at a more appropriate time. I do believe in the “write it out” philosophy, too. I am lucky in that 99% of the people who effect me do not know I write and if they do, they don’t read my work, so I can come here any time and write exactly what I’m thinking or feeling. I can be my authentic self, and if they ever stumble upon it (they aren’t interested, so the chances are slim to none), they’re probably too stupid to know who or what I am talking about.

When I used to write about friendships, one of my best friends thought everything I wrote was about her (on occasion it was. She should know better than to piss me off or push my buttons.), but I never named names, and I never would. Most of the time what I am writing is a generalization and pertains to no one in particular. If I have to resort to calling someone out by name, that’s a pretty sad day in my writing career, but I’d do it in a New York Minute if I had no other choice. Otherwise, I like to keep my integrity in check.

From here on in, I am willing to “pull the trigger”. That’s my analogy for shooting down someone or something that is causing me any form of harm or emotional pain. No more.

I’ve been through hell and back. I have the scars and the ashes to prove it, but I’m done feeling victimized and/or excluded from my life. I’m in control. I am the boss. If you step out of line, prepare for the warning shot. I only warn once.

‘Pull The Trigger’ is copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

It’s Possible To Feel Worse

Just when I thought it wasn’t possible to feel any worse than I have these last few weeks, I woke up this morning and the pain is at an all-time new high for INSANITY.

You know those pain scales every doctor’s office has posted with idiotic faces? There is no logical way to say “Oh, I’m at an eight.” when in fact you’re at a fifty for your own personal pain threshold. We’re all drastically different. What I do on days when my pain is at a ten are things that would kill the everyday, average person. The pain scale is one of the most inaccurate things I’ve ever witnessed in life. It’s also unfair to those who suffer daily. It tells you that a ten is “The worst pain you’ve ever experienced in life”. That’s most days for me, it’s not “on occasion”. A five or six would be my every day baseline according to that chart, but as I stated, it is inaccurate. I have no choice but to function at 50-85% pain every day of my life. Give me a chart for that! 😦

There are pains we’re warned about in life, at least as women. Menstrual cramps, childbirth, toothaches, ear infections, sinus pain & pressure, a burst appendix, gallbladder pain, post-surgical pain, broken bones, etc., but nothing in life quite prepares you for a searing migraine that will not go away OR the physical body pain that has decided to accompany it, courtesy of Fibromyalgia. My arms, legs, every muscle, joint, tendon, and perhaps things I may have missed are on fire. This comes from a ravishing creature who sat through four tattoos and didn’t bat an eyelash. That felt GOOD compared to what I am currently experiencing, and yes, I paid for that “luxury”.

My main task yesterday was showering, getting dressed, and getting my butt to Urgent Care. This sounds SO easy. Have you ever tried showering when half of your body doesn’t want to move or work properly? It makes it a very tedious task, indeed. I pushed through though, after a short nap (When you’re an adult who needs naps, it’s not the kindergarten kind of nap one dreams of. It’s the nap where you’re desperately trying to rest and your cell phone genuinely needs to be tossed out a window, except you need the damn alarm on it, on the off-chance you over-sleep.). I had reserved a time slot on their website on Thursday, and that had been a very smart idea because when I arrived, they took me quickly.

So, how do I feel today? STUPID. I will never go to Urgent Care again for a migraine. I asked them in advance if they handled severe migraines and they said yes, but this is clearly more suited to the emergency room. It’s technically NOT an emergency, but it IS when you need access to the medications an ER can provide that a walk-in clinic doesn’t have on hand. Sad, but true.

I was treated perfectly fine, they were very caring and kind, but after I got home, the anti-nausea meds I’d been given in the IV, along with Toradol, proved they were not only ineffective, but I am clearly allergic to one or both of them. I took a second dose of the anti-nausea medicine (normally given only to cancer patients) before bed and I am paying for it this morning. I’m nauseous AND my stomach is on fire, which makes me wonder if my ulcer has returned. I had one years ago and it took a long time before it healed (I was warned that with too much stress, it would return) and I could stop taking medicine for it, but that is pain you NEVER forget when you’ve live with it for years on end.

I have had ZERO pain relief. This means calling my doctor on Monday and making an appointment because I can’t get through a month of this until I see my new neurologist. If it is indeed my ulcer, I can go back on probiotics or OTC Nexium until I can see someone, but it is CRAZY to suffer like this.

The worst part in all of this is that I do NOT want to get out of bed. Technically, I already am (Kitten was crazy aggressive this morning because I was late getting home to feed them. She thought breakfast time was the second my head lifted off the pillow!), but my point is, I want quality rest, not six fitful hours of torture vaguely masked as “sleep”. And for the past few days, more than once, I have wondered how much stress factors into how I am currently feeling and what I am going through.

Stress can cause so much damage, and oftentimes, we don’t consider it as a factor in our health issues. I can’t remember which doctor asked if I was under a lot of stress (I believe it was my neurologist, though. It was a long time ago.), but I do remember saying “YES!” His answer was “You need a vacation.” Gee, why didn’t I think of that?! <rolls eyes>

Wouldn’t we ALL love to go away and completely detox from the stress of our lives (Relax, I didn’t say we all had to go together!)? Yes, most of us would. Anyone who says they have zero stress in their life is lying, or a delusional billionaire.

Pain should not make you feel like you’re being eaten alive by a Komodo dragon, but sometimes, that’s exactly what you feel like. I wish I could say I was being dramatic. If anything, I’m downplaying it. 😦

The best part of my Urgent Care visit was the doctor saying he doesn’t think I suffer from migraines. Excuse me?! Every highly educated neurologist I’ve ever seen has declared that I do indeed suffer from migraines, but you think it’s “just tension“?! My blood pressure was through the roof; that’s not tension, that’s PAIN. Mind you, a smarter doctor would have seen fit to provide me with muscle relaxers if he thought it was “just tension“. My neck is indeed tight and sore, not to mention achy as hell, but it’s dealing with a lot and I chose not to disclose my spinal damage to him since it’s already in bold-type in my chart. A chart he couldn’t seem to read since he repeatedly asked me the same questions over and over again.

I’ve learned my lesson. Urgent Care isn’t suited to migraines. Unfortunately, a busy emergency room isn’t much help either, but if ever I am in this position again, that’s where I’m going. Under duress.

To add insult to injury, the pain medicine he prescribed couldn’t touch any of this with a ten foot pole. I took one last night in the hopes it would help, but it didn’t touch the migraine (it helped everything else temporarily). Even better, he claimed on the prescription that I asked for half the normal dose, which I did NOT. No sane pain patient would ask you to give them less pain medicine for the same price. That’s over 50 cents per pill for a medication that doesn’t even cost 10 cents to make. My insurance company should be shot for charging me full price.

I honestly just want to lie here and moan. 😦 But mostly, I am praying this horrible nausea goes away. Obviously, today is one of those days where you have no choice but to stay in bed and rest. Bleh! I hate days like this.

Wishing you all a stress-free, no-pain weekend. I hope someone had good Mexican food for me yesterday. As bad as I feel, I would murder someone for a taco!

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.

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A Broken, Pretty Mess

When I came home Wednesday afternoon, after being at the doctor’s office for HOURS (You know your doctor is good when EVERYONE wants to see her.), I didn’t realize how awful I felt.

I remember coming inside, hanging up my coat, taking in the mail, feeding Cat and Kitten a little earlier than usual, changing my clothes, washing my face multiple times (Turns out, vegan mascara really likes my lashes and doesn’t want to come off. For the record, I have NO IDEA why I chose to wear a full face of makeup to a doctor’s appointment. I looked like I was going on a date, minus false lashes, which I can’t apply to save my life. It looked subtle and clean when I applied it that morning. It wasn’t really a “full face” by Kardashian standards, but when I got home it was the exact opposite of subtle and clean. I stared at the mirror and said “Holy shit! Is this how I left the house?!” It had that “bombshell” look to it and that’s not what I was going for, obviously. I was genuinely appalled with my own idiocy.), eating salad, and suddenly I felt overwhelmingly AWFUL. I was in bed at exactly 7:05 PM, only waking up to hydrate. I somehow had the audacity to sleep over eleven hours. No medication, no influence, just pure exhaustion mixed with physical pain.

I feel broken. I realized that when a different doctor called me to have a discussion about what my needs are moving forward (my first referral to someone else for specific reasons). I heard myself explaining the summarized version of what has occurred to make me feel the way I do and as I eventually heard myself speaking, I wanted to crawl into a hole and die. It felt incredibly sad, depressing, and honestly, the list could go on forever. It slammed down on me like a tornado coming out of nowhere. I caught myself, mid-conversation, thinking “This is what your life has been like. Holy crap! You need a hug.” But a hug isn’t what I truly want or need. I want to come away from something someday and feel healed. I’m tired of being a broken, pretty mess. I’m sick of it, because it feels like I’m somehow reduced into victim mentality, and I don’t like that feeling. No one does. For the doctor’s assistant to meet me for the first time and say “We’re here for you and we care.” was overwhelmingly emotional for me. I have family and friends who NEVER say that to me. And by never, I mean NEVER.

Do you know what it’s like to never hear a kind word spoken to or about you? I do. For longer than I care to admit, I have been reduced to being one of three things “Pretty.”, Talented.”, or “Smart.” Occasionally someone will say I’m all three, but generally I only hear the one, and that could be from anyone interacting with me on any given day. It could be a perfect stranger thinking they’re paying me a compliment, and maybe they are, but it leaves me feeling reduced to three boxes, and nothing else.

The people closest to me (my friends) would probably say much nicer things and would not reduce me into a trinity of superficiality. A friend recently told me I was “super-smart and had so much depth that most people never even realize it’s there because they don’t look”. I remember hanging up the phone after that conversation and thinking “I’m glad someone gets me.” It’s a short list.

I was at the vet one day and a guy complimented me on my skin. I wasn’t expecting it. It was one of those “Wait, what?” moments. You had to be there. He went into great detail as he explained that my skin is so flawless, he could tell I never go in the sun, that I don’t drink or smoke, that I take really good care of it, and that I’ve never had anything done on a plastic surgery level. All of those observations are correct, but I look in the mirror and I do NOT see flawless anything, I jokingly replied, “It’s all smoke and mirrors.”, but his compliment was quite genuine, and the back and forth went on for about twenty minutes. It was one of the nicest compliments I’ve gotten, but it was also an observation verbalized. I told him I was going to take him everywhere with me from now on because he’d made my day, but that’s precisely how I felt; I hadn’t heard a kind word or a compliment in so long, I would have listened to any compliment, however genuine or not, because it wasn’t negative. I don’t live my life for compliments of any kind, I just try not to be a piece of crap. I sent my cousin a photo about a month ago and she said the same thing “Holy shit, your skin is flawless. Are you wearing makeup?” There are some very lovely, sweet, blind people in this world. I am CLUELESS as to what they see.

Have you ever been in so much physical, mental, or emotional pain (possibly all three) and simply not seen anything when you look in the mirror? You reach a point where you don’t look too closely, or you don’t look yourself in the eye because you’re hurting too much.

When I woke up Thursday morning, the first thing I thought was “You look like a broken, pretty mess.”, and it hurt to think that, even though it’s precisely how I feel inside. So now, I’ve boxed myself into a category that I don’t particularly like, but it is what it is.

Someone recently told me that I’m a great person because I embrace the imperfections that make me, me. I don’t see how that makes me a great person. Embracing your flaws and your ability to know when you’re fucked up doesn’t make you good or great, but it does make you human.

When people in your life who claim to love you constantly remind you that you’re a failure, it’s NOT acceptable to allow them to get away with it. When they blame you for things you had nothing to do with, or they turn their own internal issues onto you, you need to step back and say NO. It’s virtually impossible for you to single-handedly be responsible for other people’s issues. I don’t look at anyone and blame them for mine, because that’s inaccurate.

People get offended when I disengage, either by walking away so I don’t murder them or by remaining silent. Silence doesn’t mean I’m not listening or that I’m ignoring you, but it does mean I am not going to accept negativity. I’m not going to allow myself to be harmed by words that don’t hold a whole hell of a lot of truth, and I’m not going to allow myself to be hurt by anyone who is merely lashing out or placing blame because their first instinct is to place blame. If you have issues like that, hit a heavy bag at the gym for an hour, but don’t take your crap out on me. I’m enough of a mess, I don’t need your shit on top of it.

I spend a lot of time talking other people off of their emotional ledges. I can’t tell you the last time someone even made an effort to talk me down from one of mine. The most condescending thing you can say is “I’m sorry to hear that, sweetie.”, and then proceed to talk about yourself and nothing else. I could be bleeding out of an eyeball and I’m certain someone would try to one-up me with somehow being in more pain or dealing with something far more excruciating. I catch myself at times feeling extremely annoyed by that, and yet, people don’t correct themselves. They go around believing the world revolves around them. I genuinely have no idea how they function in society.

I’ve felt invisible for a long time, but I’ve reached that point where I’m starting to believe that only certain types of people can see me. From here on in, if a person cannot truly see me, then I don’t want to be around them. Plain and simple.

So for today, and possibly this entire week, I’ll remain a broken, pretty mess. I’ll write and I’ll struggle, and no one will even glance in my general direction. My hand to G-d, no one will fucking notice because no one gives a shit.

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

poem

Cat And Kitten Send Mommy To The Doctor

I know what you’re thinking. “This is the first time they’ve thought of it in all the years they’ve owned you?!” In all seriousness, I made the appointment myself, long before my Urgent Care fiasco of last Tuesday.

However, at 5:00 a.m., I really don’t need Large Paws (Kitten) walking all over me from head to toe to shove me out of bed. I’m not sure what that was about, other than to annoy me and get me into the kitchen to give them their breakfast. Five a.m. Really?! Since when is that acceptable?! I mean, it was still dark out (at the time). This is what happens when you raise food-aggressive cats, people.

When I woke up and started making actual sounds, having dragged myself to the cough medicine, I heard Cat plummet down from wherever she was with a little “Boom!” onto the hard wood. The second I do anything even remotely interesting, day or night, I am subjected to the “Boom!” and her elephant steps come flying down to see what I’m up to. I walked into the kitchen and said “Are you both in here?” before turning on the light. There is NOTHING normal about that kind of behavior, or discussions with cats who only want food and nothing else. I swear, I won’t see either of them until I get home from the doctor. Unless I’m feeding them, they now have zero use for me whatsoever. Can you feel the love?!

Later today is my first appointment with a new doctor in a little over five years. My last one went a little something like this “I don’t want anymore pain patients!”, which was practically yelled at me, disdain as long as a month on this doctor’s face. Yeah, and I don’t want a doctor with a stick up his ass, but “pain patients” are probably the reason you can pay your student loans from the subpar ‘medical school’ you went to and we’re probably the reason you can make your car payment each month, so shush.

If you’re a D.O. and not an M.D., you didn’t go through the same training methods or learn the exact same things. If I wanted someone to treat me holistically, I’d go to a naturopath, not a D.O. Call me a snob, but I want someone who has their shit together, regardless of the two letters after their name. I’m a person, not a number in a chart. I don’t want to be passed on to the Physician’s Assistant (especially not this doctor’s assistant who could have killed me if I wasn’t a smart patient that spoke up last week.), Nurse Practitioner, etc. I just want to keep it real. If I have to wait weeks on end for an appointment with the actual doctor, then I want to SEE the actual doctor. It’s not a lot to ask.

I go in today with zero expectations. Honestly, they couldn’t be any lower than they are. I did write up a detailed medical history for her since it’ll be a while before she gets mediocre-at best records from my previous physicians. The lab is next door to the doctor’s office, so I suspect my first order of business is to be thoroughly vamped. Good luck. The only way you’ll get so much as a drop of blood is by going into my hands or wrist. You might have better luck with a paper-cut. At the mere mention of blood work, my veins disappear. I typed that and only two are visible in my left wrist and forearm. The others have gone bye-bye. They’ve been through a LOT over the years. 😦 My appointment is a little before 3:00 PM, so there’s no way in hell I’m fasting on the potential she wants to run tests I don’t actually need. I don’t have diabetes (Thank God and Goddess.), but she can run a hemoglobin A1C ’til the cows come home. The only thing I think will be high is my cholesterol, because it runs in the family, but it’s always been good previously, so I’m not going to agonize over it. My white count will be elevated, as it always is, which is indicative of an infection OR an autoimmune disease. This time, it would be hard to tell which because I’m fighting off two infections. I’m usually just fighting my body. 😦

In the history report I started with concussions and worked my way up to the reason I’m going there. Not once in this report do I use the words “Chronic Pain” or “Fibromyalgia”. I decided I want to be diagnosed properly, and therefore, she can refer me to a Neurologist and a Rheumatologist, and whomever else for that matter, but I’m not using those words until a new doctor does. I do not want or need another doctor treating me like crap because the words “Chronic Pain” and “Fibromyalgia” make them uncomfortable. Or worse, label me as a “drug seeker” when I am not. I’ve never once asked or demanded pain medication from a doctor.

I am still recovering from the infections I have and the case of Bronchitis. I missed a couple of doses of antibiotics, so I still feel pretty awful. My sinuses are terribly painful. I keep hoping it’ll rain and that some of the pressure will ease, but thus far, not a single rain drop. Figures.

I won’t lie; I’m concerned that so much is wrong with me and that no doctor on this planet will ever get to the bottom of it. I’m sick to my stomach, wondering what I’ve inherited genetically considering my brother has had a quadruple bypass, which the doctors said was not anything he did or didn’t do health-wise, but a genetic issue. Both of my parents had heart issues young; my mother died as a result of her heart giving out. My Grandfather died at 40 from a massive heart attack. More than half of my family has had or had cancer. So while I’ve got good genes in the looks and youth department, internally, I have just cause to be concerned.

I am the only person in my family with any form of Chronic Pain. My brother told me that his migraines got better post-bypass surgery. Ever since then, I’ve wondered if my heart is a ticking time bomb waiting to take me out, despite being told twice that it’s healthy and working as it should. And when it comes to cancer, I have a lot of cause to worry as a non-smoker who was subjected to secondhand smoke for the majority of her life, which is precisely how my Grandmother got cancer, twice. She also hid from the sun my entire life and still managed to get skin cancer. I’ve spent the majority of my life covered in sunscreen, and now and then, I still get a little burn here and there if I haven’t reapplied and have been out in direct sunlight longer than two hours. We talk about global warming, but we should also address the holes in the ozone layer when we discuss the need for sunscreen. People are developing allergies to the sun, and are wearing SPF 100 just to be outside for 10-30 minutes a day, if that. Hell, they have to wear it indoors too, because UV rays can and do come through the glass.

Less than an hour has passed since I fed Large Paws and Bunny Paws. I haven’t seen them or heard from them since. They’re doing a lot to boost my self-esteem, let me tell ya!

And so, today’s journey begins with pulling my shit together, preparing myself for this appointment, and going. Like I said, my expectations are low, but I’ve managed to work myself up into some very respectable panic attacks between Sunday and this morning. 😦

Wish me good luck. I keep hoping I’ll just be hit by a MACK truck and be able to call it a day. What can I say? I’m tired of this crap.

SAM_1612
I zoomed in on this photo, so you could see that Cat is sitting inside a bag of bags. She’s OBSESSED with bags from Trader Joe’s and Whole Foods. She’s also annoyed that the camera comes out every time she does something even remotely cute. Doesn’t she look bunny soft? She is.

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