Hello everyone. 😀 I’d like to welcome all the new readers. For those who have been on this journey with me from day one; thank you for sticking with me.
This has been an incredibly stressful month for me. A friend of 20 years passed away this week, which saddens me because she was such a special person. My migraines and Fibro flares have been completely out of control, which is why I haven’t written much of anything. To add insult to injury, I got hit in the mouth with the pet gate this week (Bottom teeth, right in the front.). I don’t have any bruising, but MAN, it fucking HURTS. I can handle a lot of pain, but my hands, mouth, and feet are three of my “NO” spots for anything lasting more than ten minutes. Here’s hoping it passes soon.
I hadn’t realized it had been so long since I’d written a real post. I cannot convey how nice it is to check in and see messages from some of you simply inquiring as to how I am doing, as a person. Very few people treat me like a real person, so for those of you that have and do, I cannot begin to convey how much that means to me.
Happy Full Moon to all my fellow Wiccans! )O(
Tonight is the first night of Passover (Yes, I’m Jewish AND Wiccan. I don’t hide that.). I got a surprising message last night from my cousin, who lives about 30 minutes away, asking if I’d like to join him and his wife for a Seder. He knew it was super-last minute and that I might already have plans, so he was apologizing while asking. I was SO unbelievably touched by the gesture, truly. It is legitimately one of the nicest things an extended family member has done for me in more years than I care to count.
I make no bones about how I feel about the family dynamics in my life. Please do not misconstrue my honesty as being “bitter”. I’m not, but I am honest and sometimes that may seem harsh, but you don’t know these people. Roughly 85% of my biological and extended family members could be on fire in front of me in the next thirty seconds and I wouldn’t get them so much as a glass of water, but the other 15% I actually care about, like, and/or love quite fiercely. If a person isn’t related to me and I consider them family, that is the highest praise I can give you because to me, family SHOULD be everything and they SHOULD be prioritized over bullshit, but that’s me. Not everyone is living life with my ethos.
I am touched by the invite, but I did have to decline. I’ve had a migraine for two weeks, and the Fibro flares intermittently. The last thing I want to do is ruin a holiday for someone else. Some people enjoy Passover. I’m still scarred from the last Seder I had to sit through. It is probably my least favorite holiday, and while I respect the traditions and the meaning behind it all, I choose not to take part when I am sick and need to prioritize my health above all else.
I also have an invite to a feminist Seder Saturday night. I don’t know if I’m going or not just yet. I do worry about this migraine getting worse and being someplace I’ve never been before, especially as I sit here unable to sleep. As other migraineurs know, it is often better to be sick at home, even if you’re miserable about it, then to be sick somewhere else and not have everything you need within reach. Imagine showing up to a stranger’s house with ice packs, a heating pad, essential oils, pillows, medication, etc., demanding that they all be quiet because you have a migraine and cannot tolerate noise on a good day, leave alone during a full-blown migraine. I do NOT want to explain that to people I don’t know, and I really don’t care to explain it to people I do know, but lately I keep getting asked the same questions over and over. Ultimately I’m going to say this: I don’t ever use my migraines as an excuse NOT to do something if I am well enough to do it, so if anyone insinuates that, they deserve a good smack upside the head. I’ve never used Fibromyalgia as an excuse either. If I am too sick, I simply make that known. If a person cannot see how badly I am struggling and suffering each day, then I refuse to explain it as if they’re deaf, dumb, blind, and mute.
I openly admit I’m sick of spending my days with the cats. On top of being allergic (I’ve been allergic even to my own cats for probably ten years, if not longer), it makes me feel like I have no time for myself. Cat and Kitten are such Mama’s Girls. They are almost fully integrated into the house. This week has been one of great progress. Whenever I’ve been working, researching, reading, or resting, I will check on them and find one in the picture window baking in the sun, another might be hanging out with me or asleep in her own bed, and OGK is either sound asleep in his bed or sprawled on the living room rug, also baking in a sun beam. But as the day progresses and his blood sugar drops, he loses patience for them and will sometimes get a little nasty and/or aggressive. It’s only happened a few times this week, but his medication appears to be helping him and that’s a good sign. He’s gained some weight, he’s smacking me less, is being sweet at times, but he still insists on waking me nightly. He stands next to the bed and screeches as loudly as possible, and like an idiot, I get up and do whatever he wants, regardless of how much sleep I have or have not gotten.
I’m pre-programmed to respond to three things in the middle of the night: An intruder that needs to be taught a lesson, a baby crying, and a cat crying. Some cats mimic the cry of a baby and as a woman, I’m biologically programmed to respond to that. I’m the woman in pretty much any store (Walmart, Target, any mall I happen to be in…) shushing crying babies while their mothers ignore them and keep on shopping. It drives me insane and makes me want to call CPS on them. If your child is screaming, there’s a reason, so respond. <End of rant>
OGK is willing to auction me off to the highest bidder. His demands include two large ocean-caught salmon, filleted and deboned, and five cooked chicken breasts, cut into tiny pieces. I’m pretty sure there’s a sign on the front door for the cats of the neighborhood that says “Trained Human For Sale”. Every day he looks at me with these gorgeous green eyes (You will legitimately NEVER see green eyes like this on a human-being unless they’re colored contacts and even then, they’ll look fake.), huffs out a sigh, and thinks “Ugh, she’s STILL here. How do I get rid of her?” If there was a kitty Craigslist, which I highly believe would be called Morris’ List, I’d be sold to the highest bidder in a New York Minute. He’s sick of me, until he’s hungry or thirsty and then he can’t wait to find this wonderfully trained human who’s at his beck and call. That’s me: The Beck & Call Girl. Feel free to let people know that. LOL. (Sorry Mom, Dad, Grandma, and Grandpa, but it’s a rich line and I can’t afford not to use it.).
So my lovelies, this is me checking in with all of you. More to come soon. I hope you all have an amazing weekend.
Today was a supremely bad day for me. I have no way of knowing what tomorrow may bring, but I hope that healing is part of my process because I’m truly concerned for myself. 😦
I would apologize for not writing anything of substance over the past few weeks, but I’m not sorry for sparing all of you. I’ve had little I’ve wanted to talk about, not just where writing is concerned, but in my daily life as well. When that occurs, I find it is best to retreat inside myself and wait until things are quieter, calmer, less insane, or I reach some semblance of ‘all of the above’. I do have things I will discuss moving forward, things I’ve psycho-analyzed or things I am in the process of psycho-analyzing, but the day-to-day shit? Absolutely no one wants to hear what goes on inside my head. They’d either drop dead from the speed of my thoughts or run screaming into the great unknown. I know, because I’ve tried to do both. It turns out that, at times, your mind is your own worst enemy.
I have been busy working on my passion project. I rebranded it, as I have been doing it for three years and wanted to make it something special and unique to me. I am now able to see it with new eyes. It is becoming rewarding and refreshing, and I believe that with determination, strength, and fortitude, it will continue to grow into precisely what I’ve envisioned it to be, if not end up in a different direction, far larger than I could ever dream possible. I am trying to devote a lot of my “free time” to this because ultimately, it is a career change and is helping break me out of my comfort zones.
My mother used to say “Do not be afraid to dream big, for the dream precedes the goal.” Inspirational words considering I was pretty young when she said it the first time, but she continued to repeat it whenever I’d lose faith and/or get discouraged. There is NO expiration date on your dreams.
In case you were wondering, this is how Kitten rolls in hotels. She jumps from the floor to sit on top of the refrigerator. See the defiant little face? #JustLikeMama
Cat and Kitten are slowly making progress in their new environment. Cat is such a sweet, loving, gentle soul, but she’s generally passive by nature, so I was concerned about how she would integrate. I don’t want her to be bullied or get hurt. She’s not a fighter. She has learned how to jump over obstacles, like the pet gate, in order to get to me and/or explore. She’s been dealing with OGK quite a bit in face-to-face moments. Some of their interactions go well, others do not. He chases her out of the living room most of the time, if he sees her at all. Often times, he sleeps through 99% of her living room antics. She’s stealth, I’ll give her that. It’s hard not to laugh as she darts around corners, looking for my approval before she goes exploring. One night he chased her and cornered her in my room. He hissed like a lunatic, but she stood and watched him. She refused to back down and I was so proud of her. She is coming into her own and showing how strong and brave she is. She has finally gotten to a point where she’s back in my bed, sound asleep, whenever possible, and has gone out of her way to remember her kitten days and crawl into my lap, despite the fact that she no longer fits. I know this normal part of our Mommy/Cat routine is why she has often looked dejected and depressed these past few months. It makes me sad whenever I see her big gold eyes staring at me as if to say “Can I come out now? Why is this gate here? I want to be with you.” I know that in another month or so, there will hopefully no longer be a need for the gate, but for now, I can say it has truly been a God-send.
Kitten took much longer to emerge, and she’s the Alpha of the two, so I decided to physically remove her from her foxholes. I had to pick her up, bring her downstairs, and force her to immerse herself in the new. She fought with me like a toddler as I carried her downstairs, and immediately tried to leave the second I secured her behind the pet gate. She discovered almost instantly that the new gate is easy for her to jump over (I’m pretty sure she could scale a six-foot wall with ease. She’s huge, and taller than most domestic cats.), so I often find her un-corralled, but only when there’s food involved. If she senses OGK; if she sees or smells him and no one is with her to get in his way, she will hop right back over the gate and either watch him or hide. She’s still hissing at him on occasion, but it’s an innocent sound, a “back off” warning that she is giving him for getting too close. What bothers me the most is her visible unhappiness and depression over not being with me 24/7. She’s a Mama’s Girl, and she does not appreciate having her access to me blocked, yet getting her into my room practically required pulling teeth. I am proud to say that she is finally comfortable enough to come downstairs on her own, albeit under my watchful eye. I was coming out of the kitchen one day and she was sitting in the picture window in the living room, staring at me. Unfortunately, in my joy of discovering her out and about with such confidence, I locked OGK in the kitchen and when I went to check on him, the doorknob fell off in my hand. I spent a good 30 minutes trying to re-attach it in order to get him out, feeling terribly stupid. I nearly broke a tweezer and a scissor in my efforts. Thankfully, the handyman is quite handy and was able to fix it in less than a few minutes. He then lapsed into a story about keeping a screwdriver in his bathroom, as the very same thing had happened to him one night, leaving him to try to unlock the door in the dark. It was a little TMI, but he was just trying to make me feel better in a time of great stress.
For roughly the past two and a half weeks, she’s been making it into my room safely, all on her own. She is now comfortable getting into my bed and plopping down beside me for a belly rub and kisses. She’s slowly exploring “our stuff” and is so much happier to spend an hour or two with me as opposed to being solo. So, that’s progress. 😀
I miss them because they’re not with me all of the time. They’re my babies and I love them, but the exhausted, drained, Fibromyalgia part of me is glad that I get some alone time because I spend a lot of time these days feeling physically weak.
As for the Fibromyalgia; essentially it means you are fighting a war inside your body. I need to remind myself that self-care isn’t selfish or wrong. I need to stop being so hard on myself. However, I also NEED to push myself physically and not allow this disease to rob every single day of my life. When I hit the point where I am unable to write, which is usually by 10:00 a.m. most days, I feel terrible amounts of guilt. It’s not that my brain is lacking in ideas, it’s that the pain is overwhelming and when you physically cannot do something, the creative process has to take a break.
I stay in bed when I have to, merely to rest, but I’ve been here for almost four months and I have absolutely no social life to speak of. I do nothing fun. 😦 That’s got to change, ASAP! I’m starting to feel like OGK’s vet’s office is my second home. I am by no means ungrateful or unappreciative, I simply need a reminder that I am young and have a life to live. It’s hard doing that when you spend five days a week talking to cats for 8-10 hours, and harder still when the weekends come and you find yourself sick (my migraines have been brutal), or unable to form complete sentences without sounding like a lunatic.
For anyone who thinks that Fibromyalgia doesn’t affect the brain in some way; you’d be wrong. I am normally sharp, quick-witted, loquacious, intelligent, and direct to the point where it makes people squirm, but lately I cannot handle conversations that require a great deal of thought, and I absolutely cannot deal with stressful shit. I’m already on the high-end of having no patience, but I am currently so frayed at the ends that there’s damn near nothing left. To add insult to injury, I fell in the shower a week and a half ago. I didn’t break anything, but I expected an epic bruise. After all, I fell entirely on my left side from shoulder to knee. Surely that leaves a mark? Either I am extremely slow in the bruising phase or the aches under the skin simply didn’t warrant bruising. Who knows. It took a full week for me to be able to sleep on my left side again, and the fall sent me into a terrible flare-up. Even as I sit here now, I am in a world of pain. In that world, pain laws are changing, and not for the better.
I am disgusted at pain patients being labeled as “drug addicts” simply because many of us require the use of opioid pain medications in order to do the simplest things a healthy person can do, like walk the dog, take a shower, take out the trash, grocery shop, etc. When I was healthy, I walked endless miles in Spring/Summer/Fall day. It never occurred to me not to walk ten miles one way and ten miles back, because I was out and doing things I wanted to do. I was an athlete. My world came crashing to halt as the early stages of Fibromyalgia began surfacing. One after another, these evil things made their way into my life, but it took years before I agreed to take pain medication. I’d worked for professional athletes and experienced firsthand what genuine addiction post-injury is like. Many of them lost their lives before age 40. I refused to go the same route over pain, though my doctors were calling certain things “injuries” and sending me to physical therapy and other useless wastes of time and co-payment money back then. It took research before I demanded to be tested for Lyme Disease and Lupus. I’d been tested for everything else, so I was convinced I had one or the other. When both tests came back negative, my doctor told me the only plausible explanation for every single thing I was experiencing was Fibromyalgia. Perhaps I’d heard the word in passing, but I’d never given it personal credence until that day, where I was unfortunately way too focused on the fact that I did not have Lupus, to ask the questions I should have. I’ll never walk out of a doctor’s office with a diagnosis again and come away with unanswered questions. I don’t care if it’s a challenge to the physician or not, it saves me from agonizing over it online, which isn’t always the best resource for someone newly diagnosed with anything, especially not during a time when the word Fibromyalgia was barely used. I think research is an excellent tool once you’ve gotten a second, third, or even fourth opinion, but don’t let it make you feel powerless as you read other people’s stories.
Pain patients are NOT addicts. I have yet to meet someone who suffers as I do, as many of us do, who did nothing but pop pills all day long. We’ve all looked at alternative forms of treatment, we’ve all tried different things in order to manage our pain, but in the grand scheme of things, we are NOT criminals for needing the medication and no one should ever make you feel as though you are. If you meet a pharmacist that refuses to fill your prescriptions, please contact the main office of whatever pharmacy you use and file a complaint against them. Also, call your state’s pharmacy board and file a formal complaint. You won’t cost him/her their job, but they WILL be sent to continuing education courses before they are allowed to return to work handling controlled substances, and in some instances, that might very well be a crucial move to save others from what you may experience.
I had to do this myself when a portion of a controlled substance I take went missing from the bottle after it had been counted and bagged. I didn’t have time to count them in the store, who does? I was encouraged, in fact, by my cousin who is a pharmacist and deals with pain patients regularly where she works, not to worry that I may have cost the pharmacist her job (she assured me that they rarely get fired for a first time offense), and that I had the right to demand the full pill amount that was not in the bottle. If it had been a pill or two, I wouldn’t have said anything, but it was nearly 60 pills missing (an enormous cut from my monthly script) and the pharmacist implied that “Maybe I’d taken them myself”. She actually said that to me. My response was “In three days?! I would have OD’d if I did something stupid like that, and we wouldn’t be having this conversation, would we?” If she’d said it to my face, she would not currently have one. I was enraged and we’re not even talking about a prescription for pain medicine.
My brother, post major open-heart surgery, was given very small prescriptions for pain medication, despite the fact that breathing, coughing, and moving around too much were excruciating. The pain has only recently stopped, but I assure you that it was not properly managed except when he was in the hospital and that knowledge sickens me. He’d never in his life experienced so much physical agony, but the first thing I was warned about in caring for him post-op was to make sure he wasn’t “becoming addicted”. I nearly laughed looking at the pill count on the prescriptions. You cannot become addicted with 40 pills, nor can you become addicted on 20. Not when it’s your fourth time in your entire life taking prescription pain medication. I looked at the hospital staff like they were all mentally disturbed. I suspect the subject, as it floats all over all forms of media, will continue to produce angry moments and thousands upon thousands of stories. Don’t hesitate to take to the written word if you aren’t treated with respect as a pain patient. But don’t get discouraged if more than one doctor doesn’t treat you as the used to moving forward. Nothing would shock me. 😦
I hope everyone is enjoying Spring and had a wonderful Ostara (or Easter). Passover is later month and while I, personally, don’t celebrate it the way I did when I was younger, I find that this year, I care more about being around family than the holiday itself. Of course, this requires energy I don’t currently possess, but perhaps Patient X will visit. He was released from the hospital on Monday, minus the Life Vest he has worn since being released in November post-surgery. I don’t know if that’s a good or bad thing (no longer wearing the Life Vest), especially since the additional surgeries he was supposed to have/need are currently off the table because he is too young. I do know that if my brother ends up dead because someone was negligent, there will be hell to pay. I might very well call one of his doctors myself and try to get some answers. My brother’s not big on words at the moment. 😦
I’m glad that my current state of insomnia finally produced something worthy of being posted.
This weekend is going to plunge into Siberian-type temperatures. This morning, when I couldn’t sleep, it jumped from -10 to -12 in a matter of minutes. What’s worse is; you can feel it in your bones and on your skin. It is the kind of pain I would have blown off many moons ago, when Fibromyalgia was a word I’d never heard of. But now? Now the weather dictates more of my life than I care to admit.
This morning (Friday, the 12th), I unplugged my wireless router, landline, TV, and DVR. It’s an experiment from now until maybe Monday afternoon to see if I can maintain my sanity, and possibly give up the landline or TV/DVR permanently. The handful of shows I will miss are easy to catch OnDemand next week if I’m so inclined. At least that’s what I keep telling myself. I also keep telling myself that these are things that distract me from getting a lot of work done. I’m not 100% certain if that is true or not, thus, the weekend of being, slightly, unplugged.
And so I sit here listening to Pandora on my cell phone (my one source of Internet access for e-mail and social media. I don’t have to be a complete masochist.), looking over the list of things I need to write, and want to write. I’m concerned that a few things may be controversial, which is precisely why I want to mull the subject matter over a bit before jumping on it, but when has that stopped me before? It hasn’t. However, there are sensitive things on the list and I do take into consideration the feelings of others as opposed to writing something that may, or may not, come off as a snap judgment. No matter how open-minded one may be, we all have moments where we’re slightly judgmental of something, someone, or a situation. It’s a fact of life. It’s not pretty, but it’s honest. The difference here is that I wouldn’t be writing it with malice, just wondering about the intent behind the actions of others.
Friday was a day of surprises, amidst extremely sad news I learned prior to the doorbell ringing. The sad news is an entirely different story which I will likely tell in the coming weeks. I’m waiting to hear the excuse that goes along with it because there are some things in life people simply cannot talk themselves out of. I look forward to seeing what kind of bullshit story I get fed since I already know it’s a lie. People can think what they like about me, but I double and triple check my facts before I open my mouth, especially in regard to serious matters.
Onto the good stuff: Riley sent two dozen roses along with chocolate covered Oreos (which are SO good, they should be illegal) and a sweet little diamond heart necklace. Upon calling to be certain I received the roses, I sent him a quick photo from my phone and his immediate response was “They’re red! You HATE red. (This is true.) I ordered long-stemmed Sterling roses! What the bloody hell is WRONGwith these people?! I told them white, yellow, or several dozen Calla Lily’s were the only acceptable alternatives. I’ll call you back, I want to have a word with these people.” And people think I’m bad?! Particular men like particular women. 😉
I received a sweet teddy bear from my Goddaughter because she thinks, due to the Fibromyalgia, that I need something “cuddly” to keep me company when I am “in the dark place”. I haven’t slept with stuffed animals in a LONG time, but man did that bear keep me company Friday night and during the day Saturday when I was sick.
Saturday afternoon I received a dozen yellow roses (there are actually thirteen, which I noticed when I was photographing them) from my Zia along with a stunning, grey/silver Catherine Malandrino scarf that I am almost certain she will want to borrow. It’s THAT pretty. Sadly, my mood was so soured by Friday’s news that I really wasn’t able to fully enjoy the whole “Look at all your roses” experience. I did, however, make sure to take some photos when everything was still pretty.
The fact that there’s exactly ONE left and it’s the 22nd speaks wonders for my restraint.These are African roses and they’re still alive and vibrant.I do hate red, but the petals are really stunning and inspiring from a color standpoint.Little and cuddly.
I was able to get some writing done, but nowhere near what I anticipated due to feeling so sick from the cold. I try not to sleep during the day, but Saturday required a heating pad because the pain was off the charts crazy. 😦 By Sunday morning, everything was plugged back in. I tried, I failed, and I openly admit it was mostly the wireless router that I missed because I realized how much work I could be doing, but wasn’t getting done, so I had to say “Enough!”, and even though I didn’t turn the TV on until late that night, it was probably a good idea to unplug a bit and see if external things are distracting me or if my distractions are internal. Turns out, it’s 100% internal.
I can multitask like a boss, but Fibromyalgia pain and migraine pain, tempered with the horrific temperatures, was simply too much for me. I’m pretty sure my brain was partially frozen. 😦
Unfortunately, and fortunately to some extent, this past week/weekend was productive and stressful, and it brought warmer temperatures with it. Nearly 60 degrees in February is doable, but because I pushed myself really hard Friday and Saturday, I’m lucky I was able to get out of bed yesterday. I will definitely be relying on self-care methods this week because I am in excruciating pain with no end in sight.
I’ve been doing my best to balance being plugged in and unplugged. There are benefits to both , but somewhere along the line, I became a WiFi slave and a DVR slut. 😦 Even still, I am going to try to unplug one weekend each month from here on in and see if that helps me focus on getting all the written work done that is slowly piling up. According to my inbox, the work is going to increase, but at least the workload is going to be fun.
Here’s hoping everyone is well and good and that everyone came away unscathed these past two weeks. I will be back soon.
I begin this day by wishing my best friend Marion the happiest of birthdays. Not a lot of people can say they are a true friend of mine, but you can say “This is my best friend of 20 years.” There are marriages that don’t last nearly as long. We’re the lucky ones, and sometimes I think I am simply blessed to have you in my life.
You are part angel, part mother/sister/saint, one of the kindest people on the planet, a genuine, generous soul, the person who always has my back and my best interests at heart, and you’ve been my rock through some of the most difficult things I’ve had to endure in my life. Thank you for that, for all of it.
People often say that actions speak louder than words, but with me, my words are in sync with my actions. Know that I am grateful for you, day in and day out. You are an immense blessing, little pom. 🙂 XOXO.
Where else are my thoughts at the moment? With an old friend, who is battling prostate cancer. I am glad he is surrounded by family and has the support of so many. Unfortunately, I, for the life of me, am having emotional difficulties with this particular situation. I think I am so inundated with my pain at the moment that I am only able to feel compassion and empathy for him, and that someplace, somewhere, over the past few years, I’ve forgotten that there was once love there. Here’s hoping I locate it.
I have some writing projects going on, and I am having difficulties focusing. This past Friday was a snow day, the weekend was beautiful and I pushed myself to really enjoy it, and then Monday was a snow day with barely any snow to speak of, but the schools were closed, the city was shut down, etc. And now, the days will be decent, but the nights will be “Lisa In Siberia”. My body can’t take much more of this insanity. My migraines have been torture and when that hasn’t been affecting me, I’ve had Fibromyalgia pain I wouldn’t wish on anyone. The next time you overhear someone say it’s “not a real disease”, please send them my way so they can live in my body for a year. I’d love to remember what it’s like to walk without pain. I have been in so much pain that I’m embarrassed to say I’ve been falling asleep at crazy hours and taking naps. It is AWFUL to go through daily life feeling so sick and weak, but there’s not a lot I can do about it. I have to be patient with myself and remind myself that self-care is nothing to be ashamed of. Unfortunately, yes, it does make me feel wasteful where time is concerned.
Special thanks to Beauty Stat for starting my new venture off with a bang. 🙂 I am excited to try out the products they sent me (I’ve never been so surprised to see the UPS man. LOL.) and get my beauty loving butt back into the swing of things. There’s more to me than “writer” and “editor” and hopefully some of you will stop on by and give that side of me a try. I will let you all know once it is fully launched, as it is not linked or associated with this platform, but can still be found on WordPress. For those of you that figured it out via Twitter, thank you for being the first to follow me. It means so much. 🙂 XO.
I will be back and forth. I’m not abandoning anything or anyone, but I do have a lot of hours to put into fully launching my new project, not to mention all the education that comes with it. I look at that as a creative adventure.
If I’m not back before next week, know that I am writing.
Written by LISA MARINO-Molchanova 