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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.

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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.

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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.

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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?

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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.

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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.

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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

 

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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.

actsofkindness

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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This is Chronic Illness

(Not possession, female hysteria or stress)

 

It’s been a hard day.

 

As a person with chronic illness and chronic pain, you always come upon people who may not exactly believe you.

You’re too young to have so many illnesses going on, too young to have so many structural problems with your body that required so many surgeries and too young be in so much pain.

But it’s not only that you’re too young, but it’s also this idea that you’ve not done enough to help yourself to get better and therefore, in some underhanded way, your illnesses are your fault. This is if they aren’t all in your head or you aren’t in fact, possessed.

demonicpossession1

If I sound a little raw, it’s because I am. I’m raw and hurt and I feel like the person I trust most doesn’t really believe in the validity of my illnesses and quite possibly may feel like it’s all stress-related. Oh, yes. I forgot to list that as one of the possibilities for all my illnesses- stress. While I can concede that stress has a very real impact on the body and can cause both psychological and physical ailments, I will not concede that in my personal case it had a hand in all my physical illness. I don’t have the flu. I don’t have a cold. This isn’t the 1800’s and I don’t have female hysteria! And while stress may have a pivotal role in aggravating my illness, it is not the reason I have these illnesses. I may never fully understand why the genetic roll of the dice gave me the medical equivalent of snake eyes; I’ve asked, I’ve searched and so far, I really don’t have an answer other than sheer, dumb luck.

220px-Snake_eyes_with_Chinese_dice           the-dark-history-of-hysteria-27-4a4

It’s damaging to the psyche, to mine personally and to all those who battle chronic illness and who are disbelieved, who are told it’s all in your head or it’s just stress. You are left questioning every decision you ever made for your health and your body as people you love to criticise you, pass judgment on you and leave you feeling as though you are not even capable of doing that anymore because surely you’d be in better shape. You wonder if your symptoms, symptoms that you yourself quietly ignored so that you could soldier on with your day if you were being overly dramatic? You begin to wonder if symptoms are just all in your head and stress-induced? If your illnesses, these illnesses that debilitate you, that you take medicine for, that cause you to walk with a cane with 24hr 7 day a week pain and have changed your life, these illnesses, could just be one Zen moment away from gone?

zen kitty2

But then, I am jolted back to the reality that is my life and my body and my mind. The place where I live 24/7 unfiltered. The moment I wake up, my consciousness seeping back into my body, pain is the first thing that greets me. During the day, there can be any number of symptoms that plague me, from joint pain, muscle pain from RA, stomach cramping and pain from the Crohn’s too mad itching from the chronic urticaria and various other things that I have going on. It’s a veritable pot luck of what could happen from one day to the next, and sometimes I am surprised with something entirely new. Does this mean I am possessed? Demonic take-over would be preferable at this point because honestly, I almost have more faith in the Catholic church than doctors. And I’m Pagan. My point here being, there is nothing for me to gain by creating new symptoms and as the person suffering from them, no one has any clue what it’s like to live like this other than other people like me. If I could wave a wand and return myself to the healthy person I was before all this I would. We all would.

magichatwand

Before I go, I wanted to share this. This isn’t a complete listing of all my illnesses, but I thought it was interesting to note how many of them were autoimmune related. And for me it was just driving home the fact I’m not crazy, I’m not possessed, this isn’t female hysteria, this isn’t stress-related, this is an actual medical illness. I do have bipolar disorder, anxiety and PTSD. Those can all be aggravated by stress, and I’m sure my medical illnesses can be aggravated by stress. But I am sick.

 

 

Why Rheumatoid Arthritis (to included psoriatic and inflammatory): “Doctors don’t yet fully understand the cause of RA but know that than the abnormal response of the immune system plays a leading role in the inflammatory and joint damage that occurs. No one knows for sure why the immune system goes awry, but there is evidence that genes, hormones and environmental factors are involved. https://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/causes.php

 

Why Crohn’s Disease: “The exact cause of Crohn’s disease is unknown. However, the medical community believes the condition is an abnormal immune response to gut bacteria. This results in inflammation of the digestive system. Crohn’s disease is now suspected to be hereditary because of its link to the immune system.” https://www.healthline.com/health/crohns-disease/jewish-ancestry#symptoms

 

Why Cholinergic Urticaria: Researchers just aren’t sure why this happens, only that there is mast cell involvement of acetylcholine, the hypothalamus and histamine during a cholinergic reaction. At this point, researchers and doctors aren’t sure why this process causes cell degranulation. https://www.cholinergicurticaria.net/cholinergic-urticaria-causes-what-causes-cholinergic-urticaria-to-develop/

There have been many hypotheses to include autoimmune:

  • Hormone imbalance
  • Vitamin deficiency: Vitamin D
  • Autoimmune: acquired becoming allergic to chemicals in sweat.
  • Some type of allergy or intolerance
  • Genetic susceptibility
  • Other/unknown

 

Why Delayed Pressure Urticaria: This is a cousin of cholinergic, slightly more uncommon. Unlike its cousin, the weal’s from pressure applied to the skin may not appear immediately, but instead 4-6 hours later. They can be induced by things like sitting, standing, walking and wearing tight clothes. Though as anyone suffering from this will tell you, tight clothes aren’t remotely an option. Like everything else so far, the cause is unclear but likely autoimmune. https://www.dermnetnz.org/topics/pressure-urticaria/

 

Ankylosing Spondylitis: As the running theme seems to be, autoimmune seems to be the winner, though genetics here seems to be a strong key role. “Most individuals who have AS also have a gene that produces a “genetic marker,” a protein called HLA-B27.” It is important to note that you don’t have to have this marker to develop AS and many who have this marker don’t go on to develop AS. “There is a hypothesis that AS may start in the intestines when the defences of the intestines breakdown and certain bacteria pass into the bloodstream, triggering an immune response.” https://www.spondylitis.org/Ankylosing-Spondylitis

 

Fibromyalgia: Fibromyalgia is a disorder that is characterized by chronic pain and fatigue. The cause of fibromyalgia is unknown.

Restless Leg Syndrome: “Often, RLS can appear for no real reason. Some researchers have suspected it is caused by an imbalance in the dopamine chemical of your brain responsible for sending a message to control the movement of your muscles.” https://www.vein911.com/people-get-restless-leg-syndrome/

Heredity: In some cases, RLS has been known to run in families and researchers have been able to identify genes for RLS in people.

Chronic Disease: Certain medical conditions and chronic diseases like Parkinson’s disease, peripheral neuropathy, diabetes and kidney failure can trigger RLS symptoms. Relief is experienced typically when these conditions are treated.

Medications: Different types of medicines have been known to worsen the symptoms of RLS including antidepressants, anti-nausea drugs, allergy and cold medications that contain antihistamines and antipsychotic drugs.

Pregnancy: Hormonal changes and pregnancy in women can worsen RLS temporarily. Some women end up getting RLS when pregnant when they never had it before, particularly in their last trimester. After delivery, however, the symptoms tend to go away.

 

 

 

 

More Than Just Peak Week

I suffer from asthma. It’s just one of the many things going on with me, and often the most overlooked, set aside and least worried about because it’s generally under control here. The only time I notice it is when I get sick or when my allergies are actively bothering me. However, during a recent visit to the allergist for something else entirely, I was given a breathing test to measure what my average was and found out that I was having issues that I wouldn’t have been aware of. The doctor prescribed an inhaler to take for two weeks that would help open my airways. This reminded me that sometimes, for an asthmatic, trouble is not always obvious.

In recent years there has been more awareness shed on the danger of unchecked asthma, especially during the month of September. So much so, that two weeks in September, considered the deadliest for asthmatics, has garnered the name Peak Week- because of the many asthma attacks and many sudden deaths caused by asthma attacks. This has, in turn, shined a light on asthma as a stealthy killer for people and children who think they have their asthma under control. But has it brought enough attention throughout the rest of the year? While it’s great to have a light shined down on a silent killer during the month of September and those deadly two weeks, could we be doing more?

According to the CDC, the total number of asthmatics in 2017 was somewhere around 25, 191. This divided into 6, 182 for children under the age of 18 and 19, 009 for adults over the age of 18. Out of these numbers, 11.7 per cent are below the poverty level which, as you can imagine, this would directly influence their ability to access care for their asthma and the regular medication needed to treat it, or their children. It’s frightening, as someone living with asthma, to live without proper care or needing to ration your puffs because you don’t know when you might be able to afford the next inhaler. Worse yet, is debating whether or not the wheezing you are feeling constitutes a trip to the ER, or if it will just pass. But I’ve been there, and my only saving grace is that I didn’t know then what I know now and how close I may have come to dying because I was neglecting myself. The sad thing is, some adults and children are dying not only because they may not have access to healthcare, but because they are ignoring the warning signs that their asthma is giving them to take care of themselves. Because the thing about asthma is that you won’t get a second chance if you’ve procrastinated. CDC

The following are some lesser common symptoms people may have just prior to an asthma attack, that if addressed, may lessen the severity of an asthma attack.

inhaler

  • Yawning or lots of sighing: Asthmatics and people with respiratory illnesses will do this, often without realising it. It’s a way to get more oxygen into the body and on the flip side carbon dioxide out.
  • Chronic dry cough: Sometimes this is a symptom, and for some, this is their only asthma symptom.
  • Fast breathing and hyperventilation: Asthmatics tend to have faster than normal breathing when having a flare-up even in the early stages before the symptoms are obvious. It’s your body’s way of getting more oxygen in and ventilating better.
  • Fatigue: Feeling tired more than usual shouldn’t sound strange when you think about it. Your body is working hard to keep the body oxygenated when the lungs are inflamed. So, while you aren’t yet feeling the effects of the asthma attack, you are feeling what the effect is having on your body.
  • Difficulty Sleeping: Your body is going through stress. It’s preparing to have an asthma attack. This can result in disruptive sleep, which can result in fatigue.
  • Anxiety and difficulty concentrating: Feeling anxious can come from the lack of oxygen and can also affect concentration. Not being able to breath makes us feel anxious as well.
  • Itchy chin: Some people experience an itchy chin and throat before an asthma flare-up. This is generally associated with allergic asthma but not always.

 

Four Unusual Asthma Triggers

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  • Aspirin: About 20 per cent of adults with asthma are sensitive to and have symptoms when they take aspirin, according to the American College of  Allergy, Asthma, and Immunology (ACAAI). Every Day Health
  • Food Additives: Food preservatives, food colourings, and flavouring agents have been found to cause asthma attacks in some people, so make sure to read food labels. Sodium bisulfite, potassium bisulfite, sodium metabisulfite, potassium metabisulfite, and sodium sulfite are all potential triggers. Every Day Health
  • Air Fresheners/Scented Candles: We all want our house or car to smell nice, but for asthmatics, it may be doing more harm than good. The ACAAI notes. “We know that the fragrances from air fresheners trigger allergy symptoms or aggravate existing allergies in a lot of people,” Dr. Tuck says. Perfume and flower scents are particularly likely to irritate sensitive airways, according to the results of research by a Swedish team published in the January 2016 issue of the International Journal of Environmental Health Research 
  • Remodeling or Paining: Remodeling or painting in the home can stir up dust mites, pollen, and other contaminants in the home, worsening symptoms. Additionally, the chemicals in products individual’s use for the remodel such as glues, paints, sealants, and varnishes could have volatile organic compounds in the chemical makeup, which can irritate breathing. There are, thankfully, versions of these products available today that provide low volatile organic compounds. Individuals should look for products certified as asthma & allergy friendly if they want to minimize potential reactions. Health Prep

Holiday Gear Up: When You Don’t Feel in the Spirit

Halloween is a wrap-up and I’m a little depressed. A lot depressed if I am honest about it. Halloween is my favourite holiday even though I don’t dress up for it. The whole month of October is a holiday for me when I really think about it. It’s scary movies every day that starts off with A Nightmare Before Christmas; it’s Pumpkin Spice Latte’s because just inhaling it reminds me of the childhood memories I have of fall. I love decorating my house with Halloween decorations and lights and I could keep them up all year if I had my way. I’m Wiccan, which adds an element of the “witch” to a season where witches take flight on a broomstick against a dark, moonlit night. Of course, if I had a broomstick it would make getting around a lot easier- or at least I hope it would because I sure don’t know where I’d hang the handicap placard from. Then, the spooky fun comes screeching to a halt and in comes November with Thanksgiving, soon followed by Christmas, replacing my joy with anxiety, and general lack of holiday spirit.

Grinch

You might be asking why is there such a difference between Halloween versus Thanksgiving and Christmas? I can tell you there is a lot. It starts with the pressure of Christmas that starts early in November, and now, even starts late in October. You’re blitzed with advertisements everywhere, enticing you to buy, buy, buy for all those people you love until you are in so much debt that you can’t even see. We’re not rich and while I’d like to be very generous, I can’t be and I end up feeling very guilty about it. I tried to make up for it with creativity, sending gifts [care boxes] to the family with a theme. But I still felt like not thinking about them individually was somehow letting them down and being a bad relative. I dislike how corporations take advantage of a holiday and the sentimentality, and generosity that is intertwined with it.

black friday sign

Where you have a holiday event, you have to have great food. Thanksgiving and Christmas are probably the biggest food, focused holidays. It’s traditionally when most families get together to visit each other, which explains why there’s so much food involved. In times when the norm was very large families of four or more children, common to see twelve children in a family, and then possibly expecting uncles and aunts of the same number, grandparents and cousins etc., you needed a feast with everyone bringing something to make sure there was enough food. I get it. And I love food. But right now, food and I are not talking. We’ve had a falling out. You see, food is trying to kill me and I haven’t been able to look at it the same way again. It’s an all-out War of the Roses. I’m not sure who will come out alive at the end of it, but right now it’s up in the air. These holidays are important to some of my family and missing them would be difficult, and because I don’t know “safe foods” yet, I’m not sure how to protect myself, other than avoidance. This leads to dread. I’m dreading it. I’m even more worried if I have a flare. If I just can’t go. What then?

foodtrauma

This leads me to anxiety. I already have social anxiety. But this complex relationship with food has led to what I can only describe as “Food Anxiety,” which has led to a paranoia before I eat and after I eat, never knowing if what I have chosen to put in my mouth might cause the next gastro-nuclear-war. It’s an extremely difficult position for me to be in because while I have always enjoyed all aspects of food, there’s also a darker side to the relationship. I struggled with an eating disorder as a teen to my early 20’s and managed to build a healthy relationship. I fought demons and I struggled, and there were some times that I failed. But in the end, I ended up healthy. So, the irony for me here is to be back in a situation where food is my enemy; where I never know what might happen to me physically, after eating something that’s never given me trouble before. Even now, being as careful as I am to try and stave off symptoms, there are still times when it happens. No matter how careful I am, no matter how much I watch what I eat and try to stay away from things that may trigger symptoms, I’ll flare. It feels like a no-win situation and one that leaves me anxious around food. There’s a running joke in my house about me eventually wanting to live on air and sunshine, and it’s true. I wish I could. I wish I didn’t have to eat normal food and I wish that I could avoid putting my body through the trauma of eating and never knowing what might set it off.

breatharian

Few understand my general lack of holiday spirit. They want me to ignore the state of my digestive system and enjoy holiday meals and company. I’d prefer to put on cosy joggers, cover-up in a blanket and watch something on Netflix while waiting for my bland chicken to roast, with rice and apple sauce. It’s a sad state of affairs, I know, but if I can avoid the “distress” I will make the effort to. Sometimes it’s unavoidable. But it doesn’t mean I will eat anything. Its only human when you experience pain and distress that you try to avoid it. But I also don’t want to put the family through the extra trouble. It’s not their “special diet,” it’s mine. And even the loose diet, is not something cast in stone. Sometimes it fails, and sometimes I have episodes even after being militant about what I put in my mouth. It’s exhausting. I wish people understood. I wish I could be given a Get-Out-Of-Holidays-Card, until I had some kind of handle on what is going on, what I can eat and what I can’t so that I wasn’t a wreck before and after, not knowing what was going to happen.

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When Love Hurts

October is Domestic Abuse Month. I wanted to share something before the end of the month because the subject matter is personal and important to me, and extends to the topics of my blog. I am a survivor of domestic abuse and I want you to know that not only can you survive, but you can thrive and be happy in ways you never thought you would while you were in the relationship.

My relationship began when I was 18. I became pregnant and got married by 19. As most beginnings tend to be, things were good. But as the relationship evolved our “honeymoon” ended and our true temperaments were unveiled. I was still a child and he was avoiding being an adult at four years, my senior. He couldn’t keep a job and I was working 60 hours a week while pregnant. I was also trying to go to school. Our fights about money were epic. The abuse didn’t start until our second year.

I honestly didn’t know I was being abused. Much of the abuse was verbal and emotional. He humiliated me. He threatened me. I dealt with mental illness and he used it against me, telling me I was a bad mother. Threatened to take the baby away from me if I tried to leave. When I got pregnant the second time, my mental health unravelled pretty badly. She was born prematurely at 28 weeks and I tried to kill myself after one of our fights where he threatened to take them both away. There was physical abuse too, but in all honesty, the worst of the harm he did, even to this day, was the harm he did to my psyche. That is the point I am wanting to make here.

I didn’t believe I was in an abusive relationship. It took me four years to leave him because I didn’t see he was hurting me. He wasn’t beating me every day. Did I get left with bruises? Sometimes. Mostly if he drank. Was I threatened? Yes. Did I look down the barrel of a shotgun and think that was going to be it? Yes. Did I not think that was abuse? No. Because for the most part life was quiet. Life was walking on eggshells, making sure I didn’t do anything wrong to piss him off because he mostly hurt me with words. I was degraded. I was humiliated. I was made to feel worthless. I believed it. How could I not see it beforehand? How could I get myself into this situation? How could I be such a terrible mother?

It’s important that women/men know that abuse can take many forms. It’s not always bruises and a person can hurt you in a number of ways that leave you scarred for a long time. But once you face that you are being abused, you can get help. You can turn to someone that you trust and get out of that situation. If there’s no one that you trust, there are numbers to call that I will leave at the bottom of this blog. You have a chance at a better life. A chance for a more positive future.

Abuse leaves its scars. There’s a number of evidence that links domestic violence with many chronic illnesses, not limited to but including arthritis and hormonal disorders, asthma, diabetes, hypertension, chronic pain, severe headaches and irritable bowel syndrome and mental illness. We really don’t know the scope or depth of how domestic violence affects the human body or brain. Hidden Cause of Chronic IllnessWe don’t know how the trauma can change the human body or brain, and how this event may predispose someone to any one of these chronic illnesses. But we do know how resilient the human body and brain can be and how adaptable they are. You can overcome this trauma, and even if this trauma triggers chronic pain in some form like me, you can live a fulfilling life beyond what happened to you.

National Domestic Abuse Hotline: Call 1-800-799-7233.

The Hotline