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DEFCON 5:

Complete Autoimmune Gang-Bang Attack

I’ve been in a flare for a few weeks now. However, because there’s no rest for chronic spoonies, I’ve been going through tests for Crohn’s and then yesterday, what has apparently resulted in the ultimate “Fuck-You” from my body, a nuclear stress test and echocardiogram for my heart to try and figure what’s been going on with my blood pressure. It’s decided that it’s okay to play jump rope with my blood pressure, swinging from high to low and causing me some mildly, unpleasant symptoms in between.

For anyone who hasn’t experienced a nuclear stress test, let me just say it’s like stepping aboard the Willy Wonka Elevator Ride of Doom. But you have to get it done. And you get through it. It’s ten minutes- that fly by- of pure hell, but we live with symptoms that can be pretty comparable, that doesn’t go away. So, ten minutes, to a few weeks. I’ll hop on the elevator. Anyways, after it was done and I was heading home I started to feel progressively worse. Migraine, aching body: muscles and joints; the UTI I can’t seem to get rid of even on antibiotics was making me miserable; I was hot and cold and nauseated after I tried to eat dinner, then around 11pm I felt the coming on of blisters. I was thinking to myself,

“Seriously, what next?”

Here is where I insert a tidbit of chronic spoonie advice, never, ever pose that question to the Universe, because chances are you will get the answer. And it’s going to be an answer you don’t want. I slept like hell. Waking up every hour or so and in the morning, Crohn’s reared its ugly head.

Universer laughing

“Remember me, bitch?” Oh yeah. That was fantastic. And while I am in the bathroom feeling like I’m at death’s doorstep, but recalling that no, that was the Elevator Ride of Doom and I had stepped off, those blisters on my mouth? On my fucking nose too! And there I was, head in my hands, certain that my body was plotting my death. There’s an Instagram moment!

Instagram

Now, I’m sitting here venting, drinking Dr Pepper and eating potato chips because I need salt (dehydration), I’m in desperate need of caffeine, partly because of my head still aching and partly because of nausea and I don’t dare eat “real food” because I have no idea of what future plans my evil intestines might be working up. I’m pissed that all this is happening. Pissed that my body is so defunct that it can’t handle the tests. I’m wallowing in the Pity-Party, popping off the cork in the bottle of champagne, without any freaking remorse about it because this sucks.

Puddles

When I stepped into the vehicle last night all I wanted to do was be a crying-whining- bitch about the entire experience, and I couldn’t. I had to buck-up. My safe place and I couldn’t unwind, I couldn’t lean on the person that mattered most. I felt lost. Adrift. The thing about being sick 24/7, in some shape, manner or degree, is that people forget that “not feeling” well isn’t some rubber stamp emotion that gets stamped on everything. They forget that these tests, which can be a picnic in the park for most normal humans, wreak havoc on people like us. The fragility of an already beat-up immune system becomes overwhelmed and for those of us lucky enough to win the multiple autoimmune disorder jackpot, can mean an essential gang-bang assault.

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I’m exhausted but I can’t sleep. Hungry but the idea of food nauseates me. I hurt at a level I can’t even put a number on. Do they have a level 25? I’m tired of describing it. I’m tired of talking about it yet it’s the only thing that makes sense to do; I’m tired of waking up and realising that yes, there is a new and particularly painful place to hurt and I’m exhausted from trying to get in front of this. I contemplate this completely ludicrous idea of stopping all my meds, stopping all my doctors and just living out the rest of my life in peace. It’s not going to kill me- at least not immediately and the prospect can be tantalising. But it’s not realistic. Any chance I have to longevity and being pain-free requires me to visit doctors and have tests. For now, all I can say is that my body is waving the White-Flag and I surrender.

Thank you for listening. You mean the world to me. ~ Liza aka ChronicDiva

 

I Want My Old Brain Back

Other Wistful-cisms…and Conclusions

 

I want my old brain back. You know the one I’m talking about. The one that could remember an entire grocery list on her own. The one that didn’t need to write everything on post-it notes or List-App’s on the phone or computer. The brain that made me a pretty successful mother of four small children, under the age of 5 and then when they got older: returned to school and later on, returned to work as well. There was a lot of juggling going on and I was managing alright. Looking back on it now, what I saw as overwhelming was stressful, but not as overwhelming as it would be for me now. It amazes me the volume of information I could store in my memory without needing to write it down. Entire lectures got banked up there with little need to study. I could remember my medication (for the few I took) without needing to write it down or needing an alarm on my phone. I stored in my brain at least five family and friend’s numbers and now I can only manage my husband, the rest are in contacts on my phone. Some of this can be attributed to getting older, and our lives stored on our phone, while others are truly a memory issue that is a direct result of my autoimmune disorders. Many of us are familiar with brain fog; this is like brain fog on steroids that can be positively alarming.

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The clarity is gone. The crystalline keenness in which I had been so accustomed to seeing things had now dissolved into feathered edges that forced me to squint. It makes me angry and frustrated and deeply sad because everything that I want to do well, like sitting down to write, which I love, is twice as hard. Words don’t just fire off the synapses like they once used to. It feels as though they are blanketed in a thick, low fog and I have to search for the words, sometimes using Google, or the Thesaurus like a fishing rod, several times to hook and reel the right words I am searching for. There are times I will slam the laptop shut, frustrated that this is how things have turned out. Frustrated that this is my calling and that the universe has seen fit to throw in another challenge as if life itself weren’t challenging enough. But I refuse to allow it to rob, what it is I love. If I just lay down and die, it wins. I’m sorry, but if there’s one thing that people with chronic illness have in reserve is strength.

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I want my health back. I’d settle for my health at my 30’s. I had migraines every few days but now, when I get a migraine on top of everything else that makes my body feel like someone’s punching bag, it makes me feel one hundred times worse. I want the freedom of being able to eat what I want and not have to worry about it making me sick to my stomach. You forget about how food makes you feel; you forget your vanity and about the calories because you’re losing weight from the terror waged every day in your digestive system and all you want to do is enjoy food for the sheer sake of pleasure because food has now become your Moriarty. Worse than that because you can thwart your nemesis, but you can’t thwart food. Food is life.

lotus

I miss my old body and freedom of travel. I want the luxury of being able to travel whenever and wherever I want and not have to take into consideration my illnesses and how travel will impact my body or how the stress of everything will tire me out or be too painful for me. I want my 20’s and my 30’s when I could run and jump and climb and do yoga. I wake up in the morning and the first thing that greets me is pain. There are different levels of pain: some is throbbing and aching in my joints and muscles, while others radiate and spike down from my lower back down my leg. It’s not something I get used to and I have to breathe a little humour into it, thinking, “Well, if I ever wake up and not feel pain, I know I’m dead.” A little dark humour, but that isn’t anything new with me. People would probably find it surprising to hear that I would like to go out more. I am most comfortable in my house, given my anxieties, but there is still an explorer in me. However, because I feel fragile and I’m afraid of unknown terrain hurting me, I distrust going out. Hence, missing my old body and freedom of travel.

lotus

I miss unfettered laughter, a quiet mind, a carefree spirit. Did I ever have these things? I’m 45 years old and when looking back on my life and grasping at memories of my childhood and teenage years and older I wonder if I ever did truly have these things. Was I shaped by a bipolar mind with anxiety? The PTSD is a condition that was developed, but surely, I was a clean slate at some point? But the truth is, I don’t think the slate was ever clean. And still, I would take it over some days now, because I can taste the levity on my tongue; the sweetness of it and recall the serenity and carefree spirit that allowed me to take chances I don’t think I could take now. Mental illness paints things a shade darker. Creates shadows where there aren’t any or ought not to be any.  I can briefly grasp at what was during manic episodes, but it’s never right. They’re either pale comparisons or too bright and too clean. Like I jumped into Wonderland. I wonder what it’s like to be in a normal head and experience emotions normally and not acutely because as I miss the unfettered laughter and quiet mind, I also miss the natural ability to arbitrate emotion. Instead, I feel with every atom of my being- every pore. I love with every ounce and feel with every tear, those losses that may be minuscule to someone else, are devastating to me every time, taking a bit of me with them.

lotus

I want my old brain back, and my old body back and- but I always stop. Because whining about it and venting about it is different than actually getting it back. It’s necessary to do. After all, you have to grieve what you’ve lost, because in a very real way you have lost a part of yourself, but in another way you’ve gained a different part of yourself and that is the part, I’m not willing to let go of, as much as I might complain. Why?

lotus

Because my chronic illness, while being a pain in the ass 99% of the time has taught me three very important things: Being Compassionate toward others, Listening without Judgment, Living Life Despite The Pain. It’s pretty simple and while I could probably add more things, these are pretty much the foundations by which I try to live my life. It’s not always easy; I’m not a saint, but I try. Compassion is not something I find difficult, especially when encountering so many who find it difficult to be compassionate toward me. I’m already naturally empathetic. Listening is almost as easy, but listening without trying to interject opinions or thoughts and just listening to a person is more difficult. People often want to speak about how they relate to a person’s situation, or how they would deal with it, or how they feel about it. The keywords here being they/themselves. Listening and focusing on them, and not yourself is more difficult. It is something I work on every day- not making it about me. Living Life Despite Pain, of just Living my Best Life is strange, the most difficult. My life has been focused around my family- my husband and four kids and learning how to live life in a way where it also makes me happy- where I am doing things so that I thrive as well, feels selfish. But we need to make the most of every day we are living on this earth, so that is what I am working on.

 

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Emotional Abuse

Emotional abuse can be just as exhausting and insidious as physical abuse.

  • It’s also just as damaging.
  • Can lead to depression and anxiety.
  • It can lead you to be unable to stand conflict. Doing anything and everything to avoid it, to the point where it becomes unreasonable and dangerous.
  • Your pendulum swings from indecisiveness to over-achiever.
  • You have serious trust issues, always expecting the other shoe to fall.

 

I’ve been emotionally abused. I hide it well. It’s not something I advertise and it’s never been something I advertise, but it’s always been something that if you look deep enough, that you can read. I’ve always felt it was a weakness. I can remember very clearly being told by my abuser that it was a weakness. Had I been stronger, tougher, maybe I wouldn’t get treated that way. So, I tried to make up for my failings, and never quite managed because the very nature of the abuse leads you to avoid all manner of conflict like the plague. You feel like the only way you can keep from drowning, keep from suffocating on the conflict is by avoiding it altogether. So, you bow out of every single fight, even though you may have the right of it. You go on to over-achieve in your work because you’re terrified of failing; you never really trust anyone- and when you do, it’s always there in the back of your mind that they may betray you because that’s what people do. You protect yourself on all corners and it’s exhausting. It’s exhausting during the abuse and it’s exhausting after the abuse.

emotional abuse1

 

My ex-husband emotionally abused me. It lasted 5 years; our time before marriage and our actual married time. I can’t give you a lot of detail examples on instances of the abuse. I learned a long time ago that my memory has thought it necessary to protect me by making much of my time with him into veritable Swiss cheese. I’ve thought about going to a therapist for regression therapy or hypnotherapy, but in all truth, I’m terrified. I remember enough to still be traumatised and I remember enough to have happy memories of my children growing up, so I figure I’m okay. What more could I want to dredge up? However, it’s important to understand the feelings the situations made you feel, and that is what I can share with you, because even now, 25 years later, I can remember how I felt as keenly as if I were there then.

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More often than not, he would behave intentionally frightening with me. This would achieve to two things: 1.) he wouldn’t have to be physically violent with me which would leave marks, which would either have to be covered up or need a story, which would require secondary lying 2.) the way he frightened me was threatening me with abandonment; how was I going to take care of my children on my own? I had no education at the time to speak of. I needed him financially. He would demean me regularly, the words used not as important as how it made me feel, which was useless. I felt useless as a mother because I was young, new, fumbling at it and he told me everything I did was wrong and why couldn’t I do it better. I felt like a failure in my wifely “duties,” such as cooking, cleaning and cooking. I never measured up to the perfect Southern woman. And worst, I was supposed to accept everything that was happening because we were married. Divorce wasn’t an option. I said yes and therefore, I was locked into the deal. I would imagine this would fall into intentionally interpreting traditional practices because last time I’d looked, marriage wasn’t literally until “Until Death Do Us Part.” But to him it was. It was like it gave him the okay to do whatever he wanted to me. Even rape me.

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He socially isolated me by moving me to his home town in Alabama. Even though a good majority of his kin were here, in Texas. But I was too much trouble. It was as though I were the child. The isolation was the worst thing about it there. No one cared I was miserable because no one ever saw me. I spent months in the house with no one calling or visiting to see how I was. He’d terrorise me- leave me with bruises because I hadn’t made him what he wanted for breakfast or because the kids were too loud when he was trying to sleep during the day because he worked at night and I was trying walking on eggshells, trying to keep little children entertained, while quiet and ultimately I would fail. His wrath had me in the closet hiding from him, praying he wouldn’t hurt me and staring down the barrel of a rifle, my heart pounding as I cried. He’d repeatedly raise the issue of death and my gears would have to shift from scared little girl to stoic defender. Unsure what he would do in that house, where I had two children to protect. One of the worst tactics he used after knock-down-drag-out-fights when I was trying to sleep, was stomping through the house opening drawers and cursing. He’d start in the kitchen, cabinets slamming, drawers too and then worked his way until he got into our room, going through the chest of drawers while muttering like a priest in fervent prayer. Meanwhile, I was pretending to sleep; my eyes closed tightly in hopes he would leave me be and the fighting wouldn’t start anew. But I think he knew I was awake. I think the purpose was to keep me awake and scared.

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People are often angered that my ex violated my body; I am more angered that somewhere in his mind he felt he could violate my mind and that he could bully me and emotionally hurt me and threaten me. Then, when we were coming down to the wire, going through the divorce, in classic abuser style, he made it his mission to try and take our children away from me, (saying he was smarter and more capable) when he saw everything shattering around him and he saw all his bad decisions coming to haunt him. Why you might ask, is this worse? Because it’s been 25 years and it’s still with me despite how much I’ve healed and how much I’ve progressed with the help of my husband. The fear, the shame, the anxiety; the necessity to avoid all conflict at all cost- and when I don’t avoid it feeling badly at myself. Like I don’t get a vote in how I feel, or I’m not supposed to get mad or defend myself. It hurts my self-esteem, which in turn can affect my mental health.

mindbreak

Gaslighting

My ex-husband did leave bruises. But the funny thing about bruises, they heal. They may leave behind bad memories and bad dreams and even PTSD, but there’s something about the emotional abuse, that is worse in my opinion. The insidious nature of it that while you can see a fist driving at you and may have a chance to duck, you can’t necessarily see this coming at you. Then, when it hits, it leaves you devastated and breathless. You stare at the devastation, not understanding what happened, wounded and bleeding mentally and emotionally and sometimes are left to pick up the pieces alone because when you are left with actual bruises that people can see they are quick to get angry and want to help- but emotional abuse and mental abuse, people are more inclined to scoff at you and say things like: “why are you letting him do this to you?” I know. I’ve been guilty of saying those words too. And I’ve felt ashamed for it. Because you can’t help it. You want to believe that a person you love wouldn’t beat you the way they are and that they will change. But over and over again, they do. Over and over again they rip the stitches open, making you bleed fresh, forcing you to wrap your head around something that shouldn’t be. People you love shouldn’t hurt you this way and yet here you are.

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Don’t let people tell you that you should get over it. Don’t let people tell you that after X number of months or years that your life should go back to normal. That after everything that happened to you, that your life just gets to go back to being the same. Sure. There are some that will ease back into normality easier than others. There are some that will forget and all will be well. But for others, the scars are too deep. For others, there comes are a realization that what you endured wasn’t simply at the hands of your significant other, but there were others. Others in your life who felt you were an easy target and abused you emotionally and mentally and this realization breaks you further. Take the time you need, heal yourself slowly and forgive yourself when you have setbacks because it’s not easy. Remind people in your life that all of this doesn’t go away. It stays in your heart and soul forever. A scar, like a lesion, until you die.

 

Choices, Pain, Scarlet Letter

It’s difficult being chronically ill or chronically in pain. On the one hand, because pills are given to you by your doctor and don’t necessarily carry the same stigma like natural or holistic remedies, people assume they make them better and that they are good for them. (I am purposefully leaving out opiates because of the current climate surrounding this medication and because most understand that pain medication doesn’t cure you, only masks the pain.) What they don’t get is some meds cure one thing while giving you something else. Example: some medicine you take may be great at helping your Crohn’s but may wreak havoc on your liver later down the line and long term. This is the reason for contraindications on many medications that you are warned about prior to taking them. The kind you hear about on commercials for everything from diabetes medications to anxiety medications: “May cause liver damage, heart damage, stomach bleeding, psychosis or suicidal thoughts and possible death.” I don’t tell people to abandon medicine, but using natural methods when you can, seems logical to me when the prospect of continually ingesting toxic chemicals will eventually have adverse effects. It really isn’t if, it’s when.

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Conversely, as someone who’s been studying and practicing holistic medicine in some manner for 20 years, I see many people who jump into the practice with both feet without taking into account they are still taking medicine. When I gently bring up the fact that they are taking such and such medication while also taking such and such herbal supplement or trying to concoct a blend of herbs that might help them naturally, I just about lose my mind. Just because it comes from nature doesn’t mean that it isn’t powerful. Just because it comes from nature, doesn’t mean that it can’t harm you. There are many herbs and flowers out there from where we can get medicinal relief- key word there is medicinal. These teas, tinctures, salves and anything else we can come up with can interact with medicines that we take orally or even put topically, on our skin. It is up to you, the budding, student, chemist, to study that which you are using and also that which you are already taking. It’s also up to you to talk to your doctor or pharmacist. These people are educated in the dosages and interactions and can save you from possible harm. Do not either, decide to just take yourself off all your medications without first consulting with your doctor first. Some medications need to be tapered off first or the shock can be too great to your system. Afterwards, if you want to dive into the world of Natural Herbal Remedies, do so under the guidance of someone already experienced. This is the best way to learn and the best way to ensure you don’t inadvertently harm yourself. A teacher can double check what you are doing while also teaching you.

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Here, is where we return to the unique subject of opiates.

When it comes to pain medication and ways to deal with pain medication there are many variables. Everyone responds differently to pain. Generally, everyone’s first course of action should be something non-invasive and therapeutic, like therapy and yoga while medications should bring down inflammation, without possibly causing addiction. Medicine is tricky because everyone is unique and you can’t look at someone and know how they will respond. If you want to try holistic ways before you even get to medications, try: white willow bark, turmeric, cloves, ginger, birch leaf, capsaicin and arnica, just to name a few. However, most of us who are taking opiates have all run the course of a holistic route and perhaps still use holistic efforts as we can. We’ve also tried to use general medicine such as OTC medications and then tried physical therapy and yoga and perhaps, some of us even tried acupuncture to try and gain some relief before we were shuffled off to pain management or surgeries or both.

We are a group of people within our society condemned, because we’ve had no choice but to seek outside intervention for chronic pain, for which there are those who have found themselves in the unfortunate position of addiction- a place a no human would seek to get themselves caught. Now, at the mere whisper that you’re taking hydrocodone it’s like you’re wearing a Scarlet Letter “H”. And it might just be that a Scarlet Letter might be preferable. Doctors are taking patients off their medication’s cold turkey; families are intervening between patients and their medication. It’s becoming rather biblical out there, and I do mean righteous. With doctor’s believing they know best, and patient’s families believing they know best and no one stopping and thinking to ask, “Hey, maybe we should ask the patients what they want? Maybe we should ask the patients what they need?” It’s frightening for many people who live day-to-day wondering when the plug is going to get pulled on their meds. When they might be forced to live in horrible pain.

“Η”

There are many facets to this story. Many ways you can go about trying to heal yourself and you should have that choice instead of being persecuted for them. Continue to learn what you can and make the best, informed decision you can for yourself because you are the one that has to live with the pain. Only you.

Chronic Patients Caught Between Doctor

Not It!

Just before the holidays I had surgery. December 20th to be exact. It was for hydrosalpinx (fluid in the fallopian tube) and an oophorectomy (ovary removal). I had the left fallopian tube and left ovary removed. I was able to keep my right ovary; I’d already had my uterus removed 19 years ago and my right fallopian tube around 19 years ago before my uterus was removed. Despite the length of time between removals, it kinda feels like I have things taken out piece-meal and I was just relieved to have the surgery at this point, spending most of October, November and December in quite a lot of pain. Had I been able to, I would have had it done sooner, but being the end of the year, me like everyone else was trying to get their surgery done for insurance purposes. But this shouldn’t be a problem. Your surgery shouldn’t end up being like a booked-up flight and you shouldn’t be treated like you’re just another passenger. Because you’re not; you’re important and unique and this is your body.

TERROR PLOT

I must prelude by saying that I’ve had many surgeries in my life. Enough where I can distinguish good from bad and in between. My honest opinion is that this fell somewhere in between. The problem wasn’t with my surgery itself. That went off without a hitch, but several issues afterwards that left us scratching out heads.

First things first, pain management. Big surprise there, however there was a valid reason (as far as I know), the meds they were giving me were opiates which are central nervous system depressants that can lower blood pressure. This can also make the person drowsy, while irritating the opioid receptors which block pain and suppress the cardiovascular system. [1]Causes of Low Blood Pressure with Opiates But, and it’s a very big but, the medicine they chose to send me home with (which I only found out after picking it up at the pharmacy), was the same medication I have been taking for almost five years now. This understandably left me extremely upset and as soon as I was able to, I was on the phone calling my doctor- the one who performed the surgery, to find out if there had been an error. Mind you, this was already Saturday morning, so I had to speak to the answering service which put me in touch with the on-call doctor. By-the-way, this taught me an important lesson: on call doctors cannot call in opioids because those have to be written on triplicate. I don’t know if this is just a Texas thing because I’m not well versed in opioid laws from state-to-state, but I was told my appointment would have to wait until Monday and I would have to show up to the office and wait to be seen. So, I did, which wasn’t actually too bad. It was the next part that seemed convoluted and confusing.

 

 

Texas

My ob-gyn sees me, checks my incisions and asks me about the pain and explains to me that she can’t actually do anything about it. That I have to call my pain management doctor and speak to him to change the medication because she can’t prescribe anything stronger than the hydrocodone that she already prescribed. It seemed strange to me but she is the surgeon, and if she said that is how it is why would I argue? I leave the doctor’s office and while I am in the car driving home, I am calling the pain management doctor. This is all feeling very repetitious by now. Same story told over and over again. There aren’t any appointments but I am on stand-by in case there is a cancellation and that evening I called. There is a cancellation for 9:45 on Christmas Eve and I am there, hoping to be heard, hoping that my pain will end.

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It seemed like there was a lot of confusion about who was responsible for my medication. It seems to me a lot could have been cleared up if one doctor would have spoken to the other instead of just passing off information through me, “Not it!” Because here I am, patient in pain, left without pain meds, with two doctors throwing hands up in the air saying they’re not responsible. Finally, however, my pain management doctor came through for me. But he made it clear that this was something that should have been taken care of by my ob-gyn. Maybe before surgery (weeks before), but at least after my surgery, which it wasn’t. My last pain management doctor was a bit of a dictator with medicine and never let any doctor touch my prescriptions. Not a surgeon, not a doctor, not a dentist. Never having been to another pain management doctor I thought every other was the same. So, I learned something new. But, I had seen my pain doctor before my surgery and figured it would have been touched on if important. Maybe something like, “Have your doctor call me about your pain meds. It’s important because regular meds won’t work on you being a chronic pain patient.” This would have been much better instead of Send Liza home with hydrocodone, which I’ve been taking for nearly 5 years, which works just as well as M&M’s. The worst part, worse than the pain, was being tossed back and forth like a ping-pong ball by the doctors who didn’t want to just talk to one another and instead, held me responsible and held off on help and medicine while it was sorted out. I get life isn’t fair, but that truly sucks and is not my fault. Both are my doctors and I don’t know the in’s and out’s of liability with medicine as it pertains to a physician and patient and I came from a different experience with another doctor and I feel I should have been forewarned prior to my surgery and if not then, when things began to snowball it should have been one of you who called the other to snip this before it became what it was: a pain to me. This caused me not only pain but distress.

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The other part of this experience that didn’t go well was when I was about ready to go home. My husband, on instruction from the nurse, took my bag and my cane that I use for stability to walk. I was pretty out of it from anesthesia when the orderly came with the wheelchair to my room to get me. The man asked the nurse, “Can she walk?” The nurse responded, “Yes, she can.” I was thinking to myself, “No, the patient actually can’t and the orderly never thought to bring the wheelchair completely into the room, by the bed.” But I didn’t say this out loud. Why? I don’t know. I was stuck in my head trying not to be groggy. Because I’m nice? That’s probably the closest to right. A combination of both? Yes. I really didn’t want to fall on my face right after surgery and I was in pain trying to deal with that too. But I managed. I was truly flabbergasted that I had to walk to the wheelchair by myself, that no one even offered assistance and so much so when I was finally deposited into the car, I didn’t say anything to my husband because he would have turned around and gone back in to raise hell. Instead, when I was lucid and calm and received the review for my stay at the hospital, where it asked to explain about other (because the whole of my experience was excellent) I explained about the incident. In two days, I received a phone call, an apology that it was not protocol and that it would be brought up to the director of the hospital. They did not want this to happen again to any other guest and were very sorry. That was all I needed. So, speak up. Ideally when you’re there. No need to be quiet, be uncomfortable, in pain or put yourself in un-needed jeopardy. But if you do decide that you want to wait, make it short, sweet and right to the point. No drama llama. You end up getting a lot more feedback and people are willing to do a lot more for you. Just don’t say nothing at all. You are important. And doctors, staff and the hospitals need to know when you aren’t being treated correctly.

** Edited 1.3.2020

 

nodramallama

On Hiatus

Something I’ve learned about myself that I’ve probably known all along, but I’ve only recently, truly learned to accept and work with, is that I seem to work in cycles. Whether it’s because of my bipolar, or because of my chronic illness and the cycles of exhaustion my body goes through or the chronic pain that I also struggle with and also causes me certain amounts of exhaustion if I’m suffering with the painsomnia, my work cycles wax and wane. I may go through a cycle of two weeks where I write vigorously and churn out four articles, another two weeks where I’m lying in my recliner staring at my keyboard, listening to my music, both too exhausted to write, but also numb in my brain and unable to form sentences, never mind churn out 500 words of anything. There are times when it’s extremely frustrating to be a writer with words in my head and be unable to formulate them into smooth, cohesive sentences, because my body and my brain are not functioning either smoothly or cohesively. I’ve learned to go with the flow, which if you knew me, you’d know that’s not how I am, exactly. Much of my life has had to be structured with things like school and extra-curricular activities or else I got distracted, courtesy of ADHD (though I wasn’t officially diagnosed until I was an adult, but it explained a lot of things). And old habits die hard. Now, things have to be more free-flowing, because my body needs rest and so does my mind. Which means when I’ve been learning to be able to pick up and write when I feel like I can pick up and write, which pretty much means to always be ready.

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The flip-side of that is learning to be able to put the computer down and rest when you need to and I’m going to need to. But that doesn’t mean I’ll be completely bumming around and doing the couch potato thing. I’ll be jotting down ideas as they come, staying in touch with social media so if I see any story that inspires me, I’ll write that down too. It’s not easy to self-impose “down time.” Just because I know I need it, doesn’t mean I want it. I’ve sat behind the computer trying to write, erasing everything, until after the fifth time and tearing my hair out I closed it and set it down and told myself that was enough. What was worse? Not having a blog post for a week or two or going crazy because I can’t write a cohesive sentence to save my life? Let me tell you, it wasn’t that difficult to convince the perfectionist in me. She was breathing a sigh of relief while offering me a Snickers Bar after eating a few of her own. Hiatus can be a scary word, but it can be vital to your well being no matter what you may want to churn out for your readers. And if you’re are still thinking you can do it. You can churn out something. Sure. You can churn out something. But it won’t be as great as if you took some time off and recharged your mind and body and soul. Then, you might put out something really great. So, take the time off that you need and try not to feel so guilty about it. Do something fun with your friends or family. Have a Snickers!

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If you have anything you want to share with me, please feel free to contact me via my Twitter: @fibrohippiechic, Instagram: @lovekarmafood, or here, on my blog. I’m always available, but I will say that I will check Twitter and Instagram faster than WordPress.

I’ll be back mid-January! Having surgery the 20th of December because my ovary and fallopian tube are angry with me and have gone on strike. My uterus is already gone (I feel like my lady parts are being taken piece-meal) so I gave the ovary and tube the boot! See you in January and hopefully feeling a little better!

Merry Solstice! Happy New Year!

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Loving Someone Chronically Ill

Whether you are a spouse, a caretaker, a boyfriend, a girlfriend, a significant other, mother, father, sister, or brother or friend- if you are in any way, shape or form responsible for, the care of someone who is chronically ill, chronically in pain: You are our Superhero.

It’s not easy living with someone who is chronically ill or chronically in pain, and I’m not even talking about what may be the everyday sickness that is a part of our lives or the everyday pain. I’m talking about the responsibilities you may have beyond that scope of our world that is your own. I’m talking about your job and your bills and your responsibilities that you may have that don’t include us and that may place extra weight on your shoulders because you try to shield us from any extra stress, not wanting to exacerbate any symptoms knowing that there may be little we can do about any given situation. You are our protectors.

It sometimes can’t be helped that our world is very insular. We are caught in a revolving door of doctor’s appointments, many of us fighting with Social Security disability- trying to get it; we can be exhausted by our own symptoms and feel oppressed and claustrophobic by what our lives have become. Many of us, our only connection to the outside world is social media which is our entertainment, our therapy, our friendships and our shopping experience- all one click away but never giving us that human connection that some of us yearn for, or that connection to nature that some of us crave even more. It can be a hollow existence and one where we become very dependent upon our caretaker who becomes our everything, not even realising that we’ve essentially become the human version of Dementors to our caretakers. For any of you who haven’t read or seen Harry Potter, Dementors are wraithlike Dark creatures, widely considered to be one of the foulest to inhabit the world. They feed on human happiness and thus generate feelings of depression and despair in any person in close proximity to them. harrypotterfandom

Deadly Dementors

It may seem like I’m exaggerating a little bit, but the reality is that our caretakers more often than not, neglect themselves, and how they are feeling and things that are going on in their world, in order to take care of things going on in our world. It may not be taking care of us all the time, but taking care of extensions of us, like our children, which may be a shared thing that is an equal responsibility that becomes more theirs for the time being. It may be housework that is taken on their shoulders even though they are working full time and maybe tired. Grocery shopping is something that may fall on them as well as cooking. There are so many small things that you may notice or you may not notice, that your caretaker may be doing for you to help you. Delegating other people to help you in their absence, such as older children, is something you may not register. Sometimes caretakers pull children to the side and make sure they understand that the sick parent is unable to do things they once could and they have to pitch in to help. We might only see it as them helping and never put it together that the parent/or caretaker stepped in to make sure that the children knew what was expected so the sick parent was comfortable and wouldn’t have to do things while the usual caretaker was away. These are beautiful acts of kindness that are often unseen because we are so overwhelmed in our illness and pain. But our caretakers don’t expect anything, because that is the nature of a hero.

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This is my thank you to all the caretakers out there. The husbands, the wives, the moms and dads, sisters and brothers, daughters, sons and friends who look after and take care of someone they love. This is a thank you for the sleepless nights you spend comforting and for the hours you spend at work afterwards This is a thank you for the patience in listening to our rants, our fears, our tears in not knowing what the future might hold for us; this is a thank you for sitting in silence with us and just holding us, protecting us, so that for a little while we can feel safe. This is a thank you for your optimism, for never letting us let go of the dream of a better tomorrow- a tomorrow without pain, without sickness. Thank you. Thank you for being there. Thank you for being you. And for me, thank you for being my husband.

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