I Remember

I Remember

This day is emblazoned within my mind. I would learn so much within a forty-eight hour span of time, and I would be permanently changed. But no one tells you that when you’re a child. No. They try to keep you “innocent”. Except in my family. My mother decided I was not going to be lied to or be told nonsensical stories. I’ve been treated like an adult, with free thoughts and a free spirit, my entire life. There’s much to be said for this methodology because, even today, people do try to shield their children from many things. There’s no perfect way to be a parent. Did you just shake your head? You can disagree. That’s fine.

There are so many moments in life, but as someone with extreme intuition, this one still gets me.

I remember a full day of fun, spent with my mother, brother, and Grandparents. I remember exactly where we were, and that we had been in a specific store just minutes before the tension began. I remember feeling confused when some form of visibly silent arguing began, which is when my mother and her parents would switch languages in front of my brother and I. My brother probably doesn’t have any recollection of this, but I do. Whenever another language was spoken around me, I paid attention. I still do.

I remember my mother becoming frustrated, bordering on furious. The plans had changed and she was hurt, trying to rein in her temper. She was trying to put on a brave face in front of her children, but I felt the shift in emotions immediately. Once again, my Great-Aunt and Great-Uncle would get their way, and my mother was not pleased. She was not manipulative and didn’t appreciate manipulative people. She was never fake by nature, but in those final moments, she was putting on a show.

Me, always questioning everything, precisely as she taught me, demanded to know what was going on. “Where are they going? Why are they leaving? I have to say goodbye to Grandpa.” At that point in my life, my entire world revolved around my mother, Grandfather, Aunt (my mother’s sister), and brother.

My mother, of the softly spoken everything, of her calm, easy-going nature, would reply with a tone better suited for a teenager that arrived home at four a.m. drunk, without a phone call. “You don’t need to say goodbye. You’ll see him tomorrow.” I remember trying to get one final hug and kiss, and being forcibly taken away from him. I was angry. He and my Grandmother waved, promising me tomorrow. Tomorrow didn’t happen the way any of them expected, I am sure.

It was extremely early in the morning. Ever the night owl, I left the room I shared with my younger brother to find out what was going on. I remember facing my Grandmother, her always stoic expression conveying something was wrong. I had never seen her so quiet, so sad, so lost.

“Where is Grandpa?” I demanded. You rarely saw one Grandparent without the other, even though my Grandfather was the predominant force between the two. She looked up at me with a blatantly sad expression on her normally expressionless face. “He’s gone.” was the answer I received.

Gone. What did that mean to me? It made no sense. “Then we have to go and find him.” was my reply. I was adamant. I knew he would not leave without me, without talking to me, without saying goodbye. The fiercest part of me knew that he would never leave by choice. Never. She shook her head and waited for my mother to explain to me that the single most important man in my life was “in heaven”.

I quickly learned that NO ONE understood this concept. They would look at me sadly, point up to the sky, and tell me my Grandfather had “gone to heaven”. I did not believe them. I had already extensively searched the clouds and he was not there. Because they all pointed up, I believed he had gone to a castle in the clouds. He would always study the sky with me and show me things, so this made sense in my mind at the time.

I remember his funeral. The entire chapel was filled beyond capacity. People were huddled in to make additional room. Hundreds of people had come to pay their respects. My Grandfather was beloved, respected, admired. I remember looking at all the people, so many of them strangers to me, and everyone looked back at me sadly.

I remember the cemetery. The line of cars was unreal. Again, a testament to this great man. I remember my Great-Aunt Minnie and Great-Uncle Charlie wanting to dote on me from the funeral home to the burial site. I remember my cousins, Gloria and Lenny, trying to lighten the mood in the car. Lenny was known for his sense of humor. My Aunt Minnie tried distracting me with cookies. I was not to be distracted, though. I was this man’s only Granddaughter and I knew I had a purpose on this day. After all, I fought to be there. No one thought I should be “subjected to death”. I’d heard this stated quite a bit in the previous day, and knowing myself, I was paying exceptional attention to who said what and how they said it. I’ve always been a keen observer.

My mother sat down with me and explained everything and asked what I wanted to do. I remember her friend Ellen saying “Don’t you want to stay home and play with me and your baby brother?” I remember looking up at her coldly and saying “No. He is MY Grandfather and I AM GOING.” My mother actually stared at me, shocked by the tone of voice I had used. Before that moment, I had always been described as the “little girl with the ancient eyes”, even as a baby, but in that moment my mother knew I was the fierce warrior she had prayed for. There would be no further argument. I had stood my ground.

Cemeteries are for the living. It’s how we remember those we’ve lost and try to honor them. There is nothing more final than seeing someone’s name and the dates of their birth and death etched into granite or marble. Is it bizarre that my Grandparents’ headstone is the same as my parents’ stone? Not really. I remember asking my mother what she wanted for my father and she said “Just bury us together. Get one stone. Something similar to the one for my Mom and Dad, okay?” Her only concession was that her side have a specific design. I custom-designed that stone with the help of someone who does that sort of work. The final result was startling, same as it was to see my Grandparents’ names etched in finality.

After my Grandfather’s death, I remember heated discussions. My Great-Aunt, my Grandfather’s only sister, asked my Grandmother if she could still go on her vacation, despite the traditional 3-7 days where Jews sit Shiva. My Grandmother acquiesced, as she always did in situations such as this. My mother didn’t speak to my Great-Aunt for YEARS after the fact, and my own anger would become part of the mix as I got older and heard the entire story. If, G-d forbid, anything ever happened to my brother, I would not be on a plane the day after his funeral to go anywhere. I would never show his life such disrespect. It’s nonnegotiable. How the hell does someone claim to be in mourning and then get on a plane to go anywhere to enjoy themselves?! I will forever feel haunted by that move. In reverse, I can assure you my Grandfather would not have done something so despicable.

My Grandmother never spoke about it. She had friends, family, tons of well-wishers, and her children and grandchildren by her side. She became a prominent, front-and-center Grandmother in the wake of my Grandfather’s death, whereas she was very much in the background most of the time before his passing. There was NOTHING she did not do for us, take care of, or handle if my father refused. If my brother or I ever needed something, it did not matter what it is, she was there. She went to all of my gymnastic competitions, every drama performance, every Glee club performance, every Graduation. If it was during the day and my parents had to work, she was the face we saw in every crowd. She loved us, she helped raise us, and she was always right across the street. With her, we would get extra time before cancer came and took her from us. The insidiousness of that disease, coming along and taking someone who stayed out of the sun (I always remember her being under an umbrella or sitting in the shade.), never smoked, rarely drank, was devastating. It just goes to show you that no one is immune.

For roughly the next three years, after things had settled down, I would openly discuss suicide, a word that had NEVER been used in my home or in my life. My family did not discuss such things, EVER. My parents would stare at each other in dismay, and I know what they were thinking. “Where did she get that word from?” I had never been exposed to it, but it was constant. I was determined to be wherever my Grandfather REALLY was, and I made this clear. Every time I would talk about it, my brother would become hysterical, clutching me and telling my parents “She’s my sister. She can’t leave. Don’t let her leave me.” His face would turn red and he’d cry himself into an asthma attack at times. We were incredibly adult for kids, I now realize, but back then, I thought all people had similar family lives and discussions. They did not. They do not.

It’s important to discuss loss, grief, death, and every aspect of mental health with your children. I have suffered the majority of my life because my mother was afraid for me and my father was in denial. But as someone recently said to me “You could have harmed yourself so many times by now, and you’re still here. You’re still in one piece.” Only, I’m not truly in “one piece”. I’m very much a broken, pretty mess, but people only focus on the visual on front of them. They are sitting across from someone who is dressed appropriately, someone who is clean, hair done, makeup on, and they think that someplace, somewhere, I have it all “together”. Sometimes I do, but mostly, I do not. I don’t pretend. I am as imperfect as the amethyst I wear around my neck nearly all the time, except during a Full Moon.

To this day, I still suffer. I still hurt, wondering how different life might have been if he had lived another ten or fifteen years. I miss him terribly. But most importantly, I remember. I remember it all.

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

“The tears I feel today
I’ll wait to shed tomorrow.
Though I’ll not sleep this night
Nor find surcease from sorrow.
My eyes must keep their sight:
I dare not be tear-blinded.
I must be free to talk
Not choked with grief, clear-minded.
My mouth cannot betray
The anguish that I know.
Yes, I’ll keep my tears til later:
But my grief will never go.”
Anne McCaffrey

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July

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If you saw the look on my face when I say the word “July”, you would know precisely how disgusted I am during the summer. I have never enjoyed the heat and humidity, but it’s even worse when the heat can easily trigger a migraine for you. I’ve been experiencing them on and off with so much regularity, I have reached the point where I wonder if ANY treatment method is going to be helpful when I have so many environmental triggers.

July is a difficult month for me from an emotional standpoint, too, but it doesn’t have it be. I am doing my best, and we;ll leave it at that for now.

Stay safe and comfortable.

P.S. Happy Canada Day to all of our neighbors to the North. 🙂

So Much Misdiagnosis

When it pertains to your health, you are bound to be misdiagnosed multiple times over the duration of your life. According to books with hard statistics, women are far more likely to receive a misdiagnosis than our male counterparts. It makes me question the medical field on a whole, and Lord knows I’ve been doing that for quite some time already. I am not offering up trust at the moment. I have exactly two doctors I trust to care for me properly, and no one should have such low numbers when they need help.

When I was diagnosed roughly fifteen years ago with “inoperable spinal damage between C-3 and C-7” (that’s five disks in total) in my neck that was “pressing on the nerves going in and out of my spine”, thus causing the excruciating pain I am still in, I was stunned. At the time, I didn’t know much about the internal aspects of the spine. Obviously I was well aware one could injure themselves and that you could become permanently paralyzed through no fault of your own, but I wasn’t up on the medical lingo. Until that day, my back and neck were simply an every day part of my body, albeit parts that hurt like hell. Now, all these years later, I am far more educated on the ins and outs. So when I met my current spine specialist in January, I had to report the information I had previously been given. Instead of requesting those records, he ordered an MRI. We both had to put up a fight to get it approved, and once it was, I was thrown into the difficult position of completely changing my insurance just days before a doctor’s appointment. That meant getting the MRI approved through the new insurance company, and I was prepared for yet another battle. However, they approved it immediately. Unfortunately, I did not receive a letter regarding the approval until about six or seven weeks later. There was no way in hell I was getting into an MRI machine when I didn’t have the approval in hand. Call me crazy, but I didn’t want to see an enormous bill for this MRI over a missing document with the approval on it. I’ve seen this happen to people, and I can’t afford to be stupid.

I had the MRI done on June 13th. It was quick, painless, and frankly, not worth the months of built-up anxiety for twenty minutes of my life. When I saw my doctor to go over the results, I was shocked silent to hear that my neck “looks great”. I said “Excuse me?” and he replied by saying that the damage I previously had “probably healed over time”. I stared at him and said “Why didn’t anyone ever tell me that could happen? And why am I still in so much damn pain?” He shrugged and then pulled up the images to show me how perfectly straight my spine is (Thank you for all your lectures about perfect posture, Grandma. I can still hear your voice whenever I don’t sit up straight.). However, this “perfectly straight spine” isn’t normal. Most people have a curve to their spine. So while I have the curve aesthetically, if you’re looking at the back of my neck, internally, it is straight. My diagnosis? Arthritis. It was a genuine “What the fuck?” moment from beginning to end. I’m in excruciating pain and he’s sitting across from me telling me that my disks are perfect and well hydrated, and even said “You have the spine of a thirty year old.”  I have anti-aging bones to match the genetic fact that I also look far younger than I am. Awesome! <I’m rolling my eyes, and being slightly sarcastic.> He noticed that there’s a lot of tension in my upper back/neck area, which he says is where most people store tension. I know my back and neck bear the brunt of a lot of my stress. He looked at my medication history and suggested Trigger Point Injections and referred me to a colleague for Biofeedback. When he discussed meditation and “lowering my stress levels” I said “Hello, have we met?!”, which was apparently confusing for him, so I had to explain my stance on things that haven’t worked for me in the past. I was given an appointment for the TPIs, and left his office feeling dejected beyond words.

I then went downstairs to the lab and submitted to a random drug test for medication I’ve never abused in my life. Let’s be frank when I say I have never abused ANY prescription drug. In fact, I am the last person anyone would ever accuse of having a substance abuse problem, but I did it to reassure my doctor that nothing has changed, just in case her records are audited. With the serious decline I have received in treatment these last few months, that could be sooner rather than later.

My doctor has systematically, over the course of two months, cut my medication down by roughly 80%. It is not for pain, it is not something I can “get high” on, and again, I’m not abusing it. Once my test came back, she wrote me a prescription for 33 pills. My normal monthly dose is 180 pills, and I only ever take them as needed. She has a doctor who oversees the controlled substances in her office. I was supposed to meet with this psycho (You’ll have to trust my assessment here. There’s nothing sane or normal about this woman.) for the second time, but she chose to cancel on me without giving me twenty-four hours notice. Her secretary had the audacity to inform me that I may receive a bull for HER cancelling on ME. If I receive an $80 bill from her office, she had better HIDE off the fucking grid because hunting her down like a rodent will become my new mission in life, right after I report her for fraudulent billing practices. She has her secretary call me to cancel and actually says “Tell her she can stop by Wednesday or Thursday.” Like I have nothing else going on in my life? I wanted to say “Please tell her to go fuck herself.”, but instead I said “I am booked for the next two weeks. I can see her July 3rd.” I intentionally chose this date because I am a bit of an evil genius who, now that I know who I am dealing with, has decided to be as challenging as possible. Her secretary gives me an appointment, after saying she has several other patients before me on the same day and then adds, “I don’t know if she’ll be in, it’s a holiday week.” July 4th is on Wednesday, if she’s planning on not being in the office, then I’d better not receive six confirmation e-mails like I did for the cancelled appointment. I intentionally ignore these e-mails and any text messages asking me to confirm so that they have no paper trail of confirmations or cancellations from me. I will be calling on Friday to confirm because I want to record the confirmation call. If she cancels again, my doctor is going to hear about it because I’m the one being punished by having my medication reduced each time it is renewed, and if I get the call on Monday, she had better be prepared to write a new prescription on Tuesday when she’s in the office, or have a colleague do it. If this was going to be an issue, she should have said something to me directly when she saw me at the end of March. Instead, she chose to say other things and there was no discussion regarding this topic.

The drug in question is a well known anti-anxiety medication (It’s not Xanax.). There are major health risks involved if I am not slowly weaned off of it over a two to three year period. If I should have a seizure, heart attack, or stroke due to this rapid reduction in medication, this particular doctor is the first person I am authorizing my family to sue the living crap out of (I’ve already told two family members about the situation, just in case.). I have even had my insurance company call them and warn them that this is both negligence and medical malpractice. They have been advocating for me due to communication issues where my calls don’t get returned for 5-7 weeks at a time, as opposed to the same day. I am trying so hard to focus on my health and get everything straightened out, and this office is constantly doing something to piss me off. Even the insurance company has said “I’m playing phone tag with the nurse who works for your doctor. I understand your frustration in being ignored because I call several times a week, too.” They want to get paid by my insurance company, but they can’t return a phone call in a timely fashion? Frustration is not the word I would use at this stage. Especially knowing that they just billed nearly $2000 for a drug test, my third this year. I expect my insurance to cut them off from further testing at some point, especially since they fork over $1800 each time. There are companies who wouldn’t pay $300 for this constant bullshit, but obviously they have an agreement regarding this. It’s absolutely ludicrous. There is no fool-proof way for my tests to be accurate. The first one was positive for the medication I take. The second was negative, but my sample was also disposed of after it reached the four hour mark, so I don’t know why it was reported at all if they disposed of it. The third was positive. It doesn’t get sent out to a special lab for analysis, it’s merely someone dipping a stick into the sample and then submitting a report back to the doctor. There’s nothing precise about it since the tests declare that they can be inaccurate since they are not set up for this type of medication. It actually lists about ten medications and says it cannot guarantee accuracy for them.

Being medically strung along does not make me feel comfortable or safe. It does not foster trust. It took my regular doctor seven weeks to change a medication for a serious health issue, and have someone call me in regard to it. Seven fucking weeks! I am now forced with calling back and saying “The new medication made me deathly ill. Please change it.” How long will it take her to change it at this stage is anyone’s guess.

So, as I navigate all of this, I’m also struck by the annoyance that the medication in the Trigger Point Injections wasn’t even explained to me. I spoke with someone and did a little research, only to find out it’s basically steroids, anesthesia, and a muscle relaxer. He did say that if it worked at all, it would last about two weeks. Due to a new-to-me medication I am getting from my neurologist (I will probably talk about this next year. I am, intentionally, being tight-lipped about it because I want to see if it’s going to work or not.), I had to ask her if it’s safe to have the injections. She gave the green-light, but I still don’t feel comfortable jumping into it. He never addressed the issues with my lower back, and during the physical exam, when he pressed on my spine, I nearly flew across the room when he hit my lower lumbar area, yet he did not order tests or answer my questions about it regarding pain. That’s going to bug me, and as a result, I have decided to get a second opinion. I do have an appointment for the injections at the end of July, but this is still MY health, MY body, and if I don’t feel 100% comfortable, then it’s okay to admit it and it’s okay to have someone else take a look. I have my x-ray report, I have the MRI images on CD, so asking for a referral to another spine specialist  is being fair to myself. I like this doctor, but that doesn’t mean a whole lot since we went from “I can prescribe something.” to “Let’s start injections ASAP.” Overall, he IS an anesthesiolgist and what do they do in pain clinics? They perform injections all day long. I’ve never been under any form of anesthesia in my life, and if I can avoid that going into my body, I will. Obviously, if the other doctor is on the same page, maybe he or she will better explain their perspective, but that doesn’t mean I have to agree to their methods. This doctor and his needles will still be available to me, if I choose that route, but for now, I would like to see what alternatives are out there. Pain management shouldn’t immediately fall under “anesthesia” and needles. At least not from where I am sitting, as the one in pain.

I am hoping and praying I get real answers soon. For now, I’m going to listen to my intuition and get a second opinion. Possibly even a third, if necessary. There’s something telling me that I need to dig deeper, and I can’t ignore that voice.

I’ll be back soon. Make sure you have fun without me. 😉

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

 

Sometimes It’s The Retelling That Sucks

Saturday afternoon someone asked me what I was doing for Father’s Day. I had actually forgotten that Father’s Day was coming up, so this conversation was yet another reminder for me regarding the fact that my father has been gone for ten and a half years. Somehow, my brain just wasn’t absorbing this holiday. Even today, I probably wouldn’t have even thought about it if someone in the grocery store hadn’t been discussing lobsters for her husband’s “Father’s Day cookout”. It legitimately went in one ear and out the other. I didn’t fully grasp it until late in the day.

Having to reply to the question, “What are you doing tomorrow for Father’s Day?” meant rehashing a wound. I blinked and said “Nothing. My father’s been dead ten and a half years.” The person automatically apologized, but the question didn’t bother me. It was the thoughts the question conjured up; those bothered me.

My father was not good at accepting gifts. One year we gave him a watch. He desperately needed a new one and it was given with a full heart, but he tried it on and flat-out told us to return it. I remember thinking “Wow. He can’t appreciate anything we do for him.” Because for years, my father would reject whatever we did for him. One year I got him a movie he asked for. I had actually pre-ordered it so he’d be able to enjoy it immediately on release day. About a week or so later I asked “Did you like it? Was it good?” A few days later, it arrived in the mail. I was not pleased. When I questioned him about this he said “I’ve seen it once. I won’t watch it again. Enjoy.” I was utterly dumbfounded. It didn’t matter what the gift was; there was always some sort of rejection attached to it. For me, someone who LOVES to give gifts, it was a slap in the face. I reached a point where I would only agree to cook a nice meal for him if he was choosing to visit.

A few years before he passed away, I got him tickets to a New York Yankees game in Philly as a Father’s Day gift, even though the game would be roughly two months later, if memory serves me correctly (I still have the ticket stubs somewhere.). I scored excellent seats, mainly because no one was attending Phillies games at the time, but being in close proximity to New York, there was a lovely mixed crowd of sports fans. Surprisingly enough, my Dad made the trip out to spend the weekend and we went to the game together. I had additional tickets, but my brother didn’t want to go.

When we got there, batting practice was still going on, so we got to enjoy it. Jimmy Rollins, I want you to know that my father’s first comment during that game was “The shortstop for the Phillies is an absolute STAR. He’s an incredible infielder.” He was so impressed. It was the truth. My father called it; Jimmy would go on to win a World Series with the Phillies in 2008 and was traded in 2014. You could have knocked me down with a feather when I saw that Gabe Kapler is the Phillies current manager, but I digress…

It was a blisteringly hot day, and my “perfect” seats were in direct sun the entire afternoon. Halfway through the game my father said “Now I know why I like my baseball at home.”, which I understood. He had gone to games as a kid, but he wasn’t well, and he thought he was masking this from everyone, but he was the worst liar.

We left the game early, worn out and badly sunburned. For me to get burned is a testament to how intense the sun was that day. I was completely covered in sunscreen and had a hat on. My father, in the midst of battling cancer, only wore sunscreen to pacify me and purchased a Phillies hat once he saw how necessary it was. My father, who never donned a single article of non-New York sports attire. It’s pretty funny when I think about it now. It was even funnier because he brought a hat back for my brother from the game. He threw it back at him and declared “I can’t be SEEN IN THAT!” My brother now works in and around Philly and cheers for Philly teams. I pretend not to know him when he does this. I currently live in Massachusetts, but you won’t ever catch me cheering for the Red Sox. Some things are sacrilegious.

A few years later, my father would be gone, less than two years after his brother passed away, also due to cancer. That day at the ballpark is one of the most prominent memories I carry because it wasn’t a negative experience. For maybe the second time in my entire life, that day, he was just a father with his daughter. I’m sorry my brother chose to pass on the experience, but maybe there was some cosmic reasoning involved.

Father’s Day opens up wounds for me. This year, I choose to to put what I can behind me and move forward. Believe me, the last thing I need is another reminder.    

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

Dazed, Confused, and Out Of Sorts

I’m running out of ways to describe my current state of mind. Earlier this week I had a different sense of self, and then I came home to discover I had lost my house key and the remote for the alarm. Thankfully, they were found and brought to “Lost & Found”. I received a return call the following morning letting me know they were safe and sound, and that I could come and get them, which I did on Thursday. You cannot imagine how stupid I felt in the moment, especially considering my history. I have had a set of house keys since I was eleven years old. I still have keys for every place I’ve ever lived, except my last place of residence where I tossed the keys onto the front lawn on the final day of moving. That was my way of shedding myself of the negativity of a horrible experience that is still haunting and affecting me on a daily basis. It wasn’t an exact science, but in the moment, I didn’t want to physically be carrying around a physical memory filled with pain.

I don’t normally lose something I tend to keep my eye on. That error made me so upset, and it made me question myself for days. It was an enormous “What the fuck is wrong with you?” moment, at least for me. I know many people will say I am human, no one is perfect, and/or shit happens, etc., but I take my responsibilities seriously. Anyone who thinks otherwise doesn’t know me at all.

Despite that incident, I had an extremely productive neurology consult with a new doctor. I waited nearly six months to see her, and I was definitely feeling iffy walking into the situation. After going through all of the standard questions, a quick baseline test, and doing a neuro history to rule out what I have and haven’t tried, she immediately discussed the treatment method with me that she feels I am the best candidate for. I was relieved to hear someone cut through all the bullshit and go straight to precisely what I have wanted to do migraine-wise for the past six years. I have a three to six month wait, but she feels it will be worth it, and I am hopeful. It’s by no means a cure; I will still get migraines, but after my first year of treatment, I shouldn’t be getting daily migraines any more, or migraines that last for weeks at a time. In less than three years, I have had eighty migraine-free days. That isn’t even two straight months without searing pain. To be taken seriously right out of the gate and have someone treat me with such respect was truly a bit of a shock. As I’ve likely said before, my faith and trust in the medical community is basically nonexistent. In the past year, I have met three good doctors and maybe one or two decent medical professionals, but everyone else has been a medical failure, and for me, even one medical failure is one too many.

When I explained the appointment to my brother and told him how it went, he asked me what I am supposed to do for my migraines for the next three to six months. His exact words were “What are you supposed to do in the meantime? Chew Excedrin?” It was a valid question, and it reminded me that I had not asked for an abortive, so I will call ASAP and see if my doctor is willing to get Relpax approved until the new treatment begins. Thus far, my insurance company has been very on the ball with nearly all of the things I’ve needed, so I hope this won’t become a battle. I honestly can’t handle another moment where I have to battle anyone or anything. I am mostly a basket case (which is truly nothing to joke about) on Promethazine. As it turns out, stress really DOES affect us far more than we realize.

I have seen myself decline in a dramatic way over the past year. I have never felt more “off” or out of touch with myself than I am now. Being chronically ill isn’t fun, nor is it glamorous. It is a daily battle just to get out of bed. This is something people don’t seem to realize, unless it’s happening to them.

I am having a difficult time wrapping my mind around the fact that it is June. I rarely say “I want to go back to this month and start over.”, but I have definitely been feeling like this quite a bit lately. The heat waves and then 30-40 degree drops in temperature have taken their toll on me. But from here on out, I expect this to be a disturbingly hot summer and I am stressed with the thought of trying to navigate through it. I don’t want to deal with being sick, dehydrated, and isolated. There’s not much I can really do about any of these things, but the knowledge that it’s all headed my way is genuinely too much for me.

I am trying to keep up with everything here and still live my daily life. The truth is, my daily life is exceedingly dull and unhappy. I lack the ability to be fake and pretend it’s something it isn’t. So while I am clearly not writing as much as I would like, I am still doing the best I can. I thank everyone who has stuck with me all these years, for better or worse. Having an outlet for my thoughts is important to me.

Hopefully I will be able to write more this summer. I can’t make any promises, but I can try my best.  Here’s hoping I achieve more than heatstroke over the next few months.

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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Sorting It Out

I hope everyone had a restful weekend. I’d like to welcome the new subscribers who have come on board in the last few weeks. 🙂 I’m glad you find me interesting enough to follow me on my journey. Please feel free to message me and/or leave comments. I always reply.

Today was hard for me. It was the anniversary of my mother’s funeral. I still have her eulogy typed up, and every so often I go back and read it. Mostly to remind myself where I was in that moment and how far I have come since that day.

I tried hard not to think about it, but by six o’clock in the evening my stomach became ill and my current nine day long migraine intensified. The only thing I could do was turn off my computer, set it aside, take my current migraine medication, which isn’t much, and lie down with a cold pillow over my head. If you know me, you know how much I LOATHE being sick. Suffering from a long list of chronic illnesses doesn’t mean I enjoy it. These are things I never asked for and would not wish upon anyone else. I do my best to navigate each of these things, but I also have to prioritize my health as opposed to forcing it to the back burner. I neglected aspects of myself for a long time and as a result, I am sicker today than I ever was before.

I know constantly having to fight for my rights, advocate for my health and proper treatment, and always feel like there is no certainty, just battles, isn’t helping matters. People often read my posts and get offended when I say “I don’t have much of a support system.” I wasn’t aware I was invalidating people who are, predominantly, quite vacant in my life. If all you do is call me when it suits you, text on occasion, message me here and there, and ask me questions about things of no real importance to me, I don’t consider you a part of my daily “support system”. If you feel invalidated by that statement, the issue lies with you, not with me. There are plenty of people who I have offered support to and have received the equivalent of a slap in the face in response, so excuse me if I don’t deem these people “supportive”. My assessment is quite accurate.

Standing by someone while they sort through their health and unhappy situations means you don’t ever intentionally trigger their anxiety, anger, or emotional suffering. If you never say a kind thing to another person, you certainly aren’t bettering their life in any way.

I was raised by two women, my mother and Grandmother. My Grandmother would always turn to my brother and I and say “If you don’t have anything nice to say, don’t say anything at all.” My mother’s version was different. She always encouraged me to speak my truth. I was five when she told me “The truth is more respected than dishonesty. If someone chooses not to believe the truth, and they try to discredit you, at least you know you’ve told the truth, regardless of what they are choosing to believe.” Those were profound words for a young girl, but she always encouraged me to use my voice, and not allow others to attempt to rob that power from me. Having lost both of them, I know they are each in the unique position of being able to see how people treat me, to hear the conversations and comments, and to know precisely who is and is not doing their best. I am far from perfect, but I am doing the best I can.

My Grandmother was such a strong believer in family. After she passed away, I quickly saw through all the things she tried to keep in tact. Her belief in the “family unit” stemmed from how she was raised, but in truth, there was no “family” at all. There was this immense illusion. My mothers’ side of the family chooses to have nothing to do with me, and the feelings I have in regard to their behavior are things I don’t always verbalize. I try not to think about it too much because I am justified in my anger. I have zero respect for a lack of decency, lack of common sense, and basic humanity. The same is true for my fathers’ family. I witnessed so much growing up, always wondering why my Grandmother held tight to the idea of this “family” dynamic. I watched how it became nothing and continued to become less and less the day of her funeral. Losing both of my parents put everything into perspective for me.

I don’t doubt that certain people have feelings for me, but do I believe those are feelings of love? Rarely. I know my brother loves me in his own way. He steps up at times when I am not expecting it. I know that other family members love me in their own way, too, but I often feel excluded and dismissed. I often feel set aside as a person with no thoughts, no feelings, and no validity. If one more person has the audacity to say “Are you ever positive about anything?”, I will probably lose my temper.

I have never had anyone who truly knows me or anyone who follows my work deem me a “negative person”. I am my most authentic self when I am writing and speaking. I am the same way in every aspect of my life. And yet, I’ve noticed snide remarks of late that question my genuine authenticity. I have walked away before saying “Go fuck yourself.”, because I will not engage with someone who is intentionally looking for a fight and/or being an asshole. I have walked away before saying “You’re clearly projecting if you’re questioning MY authenticity. I question YOURS, but I’m classy enough to keep my mouth shut.”

Love, loyalty, authenticity, and all my friendships and relationships are some of the most important things in my life. In this, I am a supreme perfectionist who is honest about her imperfections. Someone told me last week “I can see that authenticity is very important to you, and I respect that.” When one person chooses not to see it, and everyone else sees it immediately, it is much easier to cope with one person trying to take a pot shot, as opposed to thousands of people viewing you negatively.

I am going through a lot, but I’m still the same person. I am working on myself, and I am doing the best I can. If you don’t know every single thing in my heart, you have zero right to judge me.

This week I move on to other battles. I am hoping for some downtime at some point to be able to find a sense of calm. I have a consult with a new neurologist next week, so I am hoping there’s a positive outcome there, especially since I’ve waited nearly six months to be seen. Fingers crossed for some good news.

Wishing you all a wonderful week ahead… Li

copyright © 2018 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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