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.

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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.

Procrastination in Chronic Illness

I have never been one to procrastinate. Never. I am the kind of girl who always got her assignment done in school early. I plan for things. I plan for research and I have time-tables. I like to know how long it will take for me to research before I sit down to write so I have everything in order. I make menus for the week and sometimes for the entire month if there is a surgery that I have to plan for. The point here: I am a planner, not a procrastinator and what chronic illness sometimes creates is a huge procrastinator. Here are some reasons why.

Showers: My Nemesis

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Once upon a time, when my world was lovely, I could luxuriate in the bathtub or a long shower. I loved turning up the music sometimes, singing my favourite songs and just relieving some stress. There’s none of that now. Besides the fact that the simple act of taking a shower exhausts me, it’s compounded by the water hurting my skin and making me itch violently and for unexplained reasons. It could be a combination of the fibromyalgia’s allodynia that makes my skin sensitive and susceptible to pain, and my own pressure and cholinergic urticaria that causes unexplained hives when the water beats down on my skin. Whatever the reason might be, showers have now become my least favourite activity and one which I put off because it makes me feel so badly. I hate the way the procrastination makes me feel too: dirty. Which usually sets off my particular brand of OCD, which then causes a spike in my anxiety. I hate that feeling. I lament those days when I could sit in the bathtub for an hour and turn into a prune. Even if the itchies were to go away there’d still be the exhaustion that comes after the shower. The deep exhaustion that leaves me so tired I need to go sit down for a while before attempting to dry my hair. And I dry my hair sitting down! I feel like I’m 100 years old and I’m only 45.

Blog Posts: On Hold!

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I love writing. My perfect world consists of a cabin, and writing, drinking hot tea and not much else. But with chronic illness and chronic pain, there are days I procrastinate writing or weeks where it gets put on hold because I am feeling so badly or where I’ve gotten so little sleep that I know stringing two sentences together is going to be a challenge. It bothers me when I procrastinate. Even when the procrastination is not really procrastination but time off, for medical reasons. It makes me feel like I can’t even do one thing, like a “normal” person. And I have to sit down with myself and tell myself sternly but gently, that no, I’m not “normal” but who is? We all have things going on with ourselves that present us with challenges. The art of living is learning how to work with these challenges so that we can live our lives the most abundant way we can. And if that means My work schedule is one week on, one week off, or three days on two days off or however it may look and however unconventional that maybe? So be it. As long as I roll out articles that my readers are happy with, I will keep on doing it because it makes me happy and gives me purpose.

Food is Divine: Unless You’re Gut is Fuc**ed

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I love to cook. I love to bake. Bread was once my best friend. Pastries my lover. The holidays had me salivating and planning for months. What to cook? What to bake? Cookies were sent to relatives and friends for gifts. Now, where I once saw food in a vibrant palette of colour, it is grey. I procrastinate with eating and cooking and making my weekly menu for meals. It is no longer with the same enthusiasm that I sit down to eat with the family or go to eat with my husband, and the holidays have grown dismal and lack the flavour I was once accustomed to. This is all because of my gut issue, partly related to Crohn’s and partly to other contributing gut issues like non-Celiac Gluten Intolerance that have made my eating experience something I don’t know what to do with. Cooking for my family was an extension of my love for them and I don’t know how to do that anymore. Eating the food cooked is no longer an enjoyment. I feel like chronic illness has stripped away from me something dear, that made me who I am.

To Sleep, Perchance to Dream: Unless You’re in Pain

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Ah, to sleep. This has been something that has eluded me since I was a youngster. Being the INFJ I am, I can remember reading my mother’s Reader’s Digest, and catching this article about how keeping your room cool, having lavender on your pillow and your bed at the opposite end of the open window so you could feel the breeze would help you sleep better at night. I have been struggling with insomnia for a long time. 35 years to be exact, though these days my insomnia is the result of pain and I procrastinate for bed because I most of the time I lie there in pain counting exploding sheep. They explode because in the midst of my trying to peacefully try and breathe through the pain, I will suddenly get a lightning bolt down my leg and there will go the peace and the sheep with it. Inevitably, I avoid the whole situation by not sleeping. But, not sleeping isn’t exactly great coping skills for someone with chronic illness or someone with insomnia. You need sleep but when you are in pain and you have tried everything, or think you have and haven’t gotten adequate results, it can be more than frustrating. That’s when you just avoid everything. Goodbye sleep. It was good knowing you.

All of this is part tongue-in-cheek but truly heartfelt. Your life changes when you are faced with chronic illness and there may be many reasons you procrastinate. It’s not just an unwillingness to do something. I feel a lot of times that we simply aren’t understood. That people haven’t tried to see things from our perspective or taken the time to think about why we might be the way we are. It’s a very rough road we’re on. One that unless you’ve travelled it, it’s unlikely you will ever truly understand it. But it shouldn’t mean that you can’t try and empathise a little. Maybe something cheeky, silly but still real, will help.

 

They Call That Fashion?

[image: Getty Images]

KimhēKim fashion brand posted videos from its September 24 Paris Fashion Week show, which features a model walking up the runway in a T-shirt labelled Sick across it with an IV as an accessory instead of a purse. The collection is described as “energetic,” as models sported black sunglasses and either carried selfie sticks or IV drips. Among some of his reasoning for this line: “This collection is about attention-seekers spending their summer vacation in a hospital.” He also says, “These days we all want attention and positive reaction from people, especially on social media. But instead of hiding it, let’s just be honest and admit that we want it, but do it with elegance.” (Burlet, 2019)

Okay. There is a lot to cover, so let’s get down to it. As a person with chronic illness (autoimmune disorders), who goes every six weeks and sits for roughly two hours with an IV for infusions, who is SICK, and who doesn’t give a crap about being elegant about it because I’m not an attention seeker- wow! This takes absurdity and shock fashion/art to a whole new level comparative to Bstroy, which showcased their bullet-like hole hoodies, and names of schools who had experienced mass shootings. It’s difficult for me to grasp why any designer would want to take these tragedies and exploit them in this way. But by his very own words, “attention-seeking” and “spending their summer vacation in a hospital” he truly doesn’t understand the difference between sick and trendy or fad. Where the rich or elite go to IV Infusion Bars to receive vitamins and rehydrate after a night of partying. I also considered that this collection might be in part to poke fun at these rich and trendy types, with their IV drips and selfie-sticks but I think it failed because of the manner he went about in showcasing it that would have been solved with one word: Not Sick.

I kept reading his words over and over again trying to understand his reasoning for this outrageous collection. It did not seem like a purposeful attack on the chronic illness community, however ignorant it may have been. But before you become angry with me, ignorance is never a defence and yet, I would still try and understand him. What I zoned into was the part he says “we all want attention and positive reaction from people, especially on social media. But instead of hiding it, let’s just be honest and admit we want it, but do it with elegance.” I read this and interpreted from him that these people who are flying off to these resorts they call “hospitals,” for their IV drips and “medications,” because they’re “sick,” should perhaps be honest about what they’re doing, be more authentic about themselves and while they are doing so to be more elegant and fashionable. But he widely miscalculated this interpretation and in doing so offended another community who is Sick and who is Not Attention-Seeking. Those suffering from Chronic Illness.

My first reaction when seeing the Instagram posts were quite visceral. I was instantly angered that someone could be so obtuse that they would throw this “Fashion” out there to be oohed and aahed over by fashion gurus and the general public everywhere. I may not be a fashion follower, but I know enough to know that Paris Fashion Week is a big deal and something like his collection can suddenly shift chronic illness and the people suffering from it into a negative light. We already bear enough scrutiny in our daily lives from the public that seeing this on the catwalk made me mentally scream and then take to social media to vent my anger the only way I could. But because I blog, I decided to use this platform as a way to explain to readers why this angered so many. However, I thought it was only fair to research why he may have created this collection, to begin with, hence the reason the introduction is laid out the way it is, which is only a logical guess. He’s been pretty cryptic about the meaning and inspiration of the collection and I did my best to be fair. He’s a fashion designer, successful from what I have read, dealing with an element of society that we might call the 1%. I am not implying that the 1% doesn’t deal with chronic illness, but what I am saying is that they can check into hospitals on a whim, for summer vacation, whereas the working class do not.

So, I’m wondering if there’s a bit of ironic humour going on with him somewhere there. A stab at those elites who think that checking themselves into the hospitals for a summer equated to being “sick,” and not vanity? His collection backfired among those of us who are sick. Did it backfire as a whole? Did it do badly at the Paris show? I don’t honestly know? Will it draw chronic illness into a negative light? Will people think that we are attention-seeker’s more now than we were before his collection? I don’t think so. Was it in poor taste? It’s aggravating to me as a chronic illness advocate, as someone who struggles with chronic illness, to wake up one day and see things like that. It’s frustrating. But then I remember, that’s why I am here. I’m here not only to bring awareness and to bring positivity to people who are sick, and their families, but also to those who know nothing about the illness and the chronic illness community, like him. So try not to despair when you see things out there like that my friends. Band together and redouble your efforts to spread awareness.

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Being Your Own Health Advocate

It’s Not as Easy-Peasy as it Seems

As long as I’ve been sick, and as long as I’ve been blogging, I’ve either been reading about or hearing about being your own health advocate. While being a self-advocate is something that seems easy, and is something that we have been doing since we begin seeing the doctor on our own, it’s not always easy. I’ve wondered why that is and how we can improve on that, to become better self-advocates, because there may come a time when ourselves is all we got.

 

Difficulty Being Assertive with Your Doctor?

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You’re not alone. Many people find that being assertive with their doctor can be a difficult undertaking. We can find ourselves at our most vulnerable when we are with our doctor, both physically and emotionally, but hoping that with all their education and experience, that they have the answer we are so desperate to have. However, when their diagnosis or treatment plan goes against what we may have in mind, we have a great deal of difficulty telling out doctor this. Why?

 

Many of us feel that if we question a doctor, we are somehow questioning their expertise and authority. We don’t see ourselves as equals when sitting with our doctor, even though we are both adults and equal as human beings. This seems to make us feel, in a sense, like a child and a “questioning of expertise may lead to retribution in the form of a lower quality treatment from their doctor somewhere down the road.” We’ve all heard doctors as possessing God complexes. There’s a reason for that and challenging their authority is one of them. But there are ways you can have a relationship with your doctor as an effective communicator- self-advocate. [1] Wagner, 2019

 

 

Non-Negotiable with Doctor

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Trust: Once you have a doctor, establish trust. Without this, you can’t proceed. Good doctors listen, don’t make you feel rushed and have patience. But doctors can have a bad day and staff can be off, so remember to have patience too.

 

Respect: Everyone starts with respect in my book. You don’t have to earn anything with me. But once you lose it, it’s gone. If a doctor disregards a legitimate complaint; if they tell you it’s nothing and to just lose weight-game over. Find a second opinion and start again.

 

Serious surgery/treatment: Any experimental/trials, surgeries, cancer treatments or whatever, get a 2nd or 3rd opinion if necessary. Do your research and see what trials they did for it; see what other patients said about it, and how they are feeling now. It’s very important to do your homework. If you don’t like what is said, find another doctor.

 

 

Tips for a Good Self-Advocate:

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Communicate: It’s not just about talking. It’s about being effective. Any advocate out there will stress the importance of clarity with your doctor, and communicating your concerns and desires over the progress of your treatment while maintaining a professional relationship is essential. It’s important to be able to discuss treatment with a doctor without feeling like you’re going to hurt an ego.

 

Assertive: “Being pushy without being annoying.” You won’t find that definition on the dictionary, but I like it. In order to be an advocate for yourself, you need to learn how to do this for yourself, because there are going to be many instances you find yourself needing to use it. Whether it’s calling up the insurance company and finding out why a bill hasn’t been paid yet- and as my grandma once told me, you catch more flies with honey than vinegar, it pays to be persistent but not a bitch on the phone. They’re only doing their job and they don’t know any more than you know them.

 

Passionate: Oh, energy and enthusiasm! Chronic illness and chronic pain is a long struggle. You have to bring your pom-poms with you for you, to fight this. Ain’t no one gonna fight harder than you. Remember this when you feel like crap when you’re tired and you hurt and remember when you just don’t want to do it. You gotta look out for number one.

 

Knowledgeable: Research the Issue. It’s easy to Google something but it’s better to research. Google doesn’t mean it’s true, but if you research it and you find five or ten articles that say it’s true, you have a far better chance of the information being true. I’m a big proponent of research and being armed with research when going to the doctor can only strengthen your case when you bring your ideas for certain treatment before them. You may not have a degree but you have the right to consider what treatments you want to try.

 

 

 

[1] Wagner, 2019

In a More Holistic World Why Am I Still Treated Like A Part?

The necessity for a more integrated medical approach.

 

Let’s face it, everywhere you turn you are blasted with information about how important it is to treat your body, mind and soul. While it may have begun as something of a New Age thing, or maybe something that only those Yogi’s did, has quickly integrated itself within our mainstream society, philosophy and medicine. These non-medicinal reaches extending into our surgical units, where recent research has been done regarding the use of aromatherapy to combat nausea after surgery. The reason I bring this up is that every day we are being introduced to more and more reasons why maybe, we should step back and take a look at the bigger picture of our body and why we should perhaps not reach for this or that pill. But when we go to the doctor seeking help, we are often treated like a car on a conveyer belt and directed to this specialist or that specialist. While this is fine in some respects, for many of us with chronic issues, it’s a nightmare. Especially when you have 7-8 specialists and they don’t communicate with one another. This needs to change.

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I’m not rebuking Western medicine here, nor saying that we need a complete upheaval of our current medical care. In fact, I’m only suggesting one, small change. Talking to one another. This has been the subject of other posts as well because, in an age where we literally have the power to talk to someone at our fingertips, I don’t understand why doctors can’t talk about their patients. And some do. Some are very involved in how they treat a person, while others remain quite apart from it, leaving it to the patient to relay messages and information that might be muddled before it gets to the doctor’s ear. We’ve all played telephone, right? How does a doctor expect a patient to relay information to the next doctor in the same, exact form in which it was received? What if the doctor has questions about what was advised to the patient? Where is the debate about treatment when the patient has no medical background? But sadly, it hardly ever gets to that point. You go to the neurologist and he gives you medicine for problem A. You go to the gastroenterologist and he gives you medicine for problem B. You go to the Rheumatologist and he gives you medicine for problem C. You go to pain management and he gives you medicine for problem D. But, what if problems A, B, C and D are all interconnected? What if it’s not the medicine that you need at all but someone to connect the dots and take stock of the whole you?

 

Integrative Medicine: A form of medical treatment that combines practices and treatments from alternative medicine with conventional medicine. There is an emphasis on the “whole person,” and focuses on wellness and overall health, rather than only treating the disease.  

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My favourite part of that whole definition, besides “whole person,” is “rather than only treating the disease.” We’ve become, in my opinion, rather over-zealous in the treatment of disease and the use of pharmaceuticals and I think this has been our greatest downfall in our application of conventional medicine. Once upon a time, to become a doctor was as sacred a calling as becoming a priest. It was generations of fathers (as a male-dominated field) who had sons, who were followed this path of healing. “First, do no harm,” was an oath breathed out upon the lips of these doctors with reverence. A reverence that extended to the profession, the body that they would be treating and the manner in which they would be treating them. I’m not saying that there weren’t bad doctors in the past, what I am saying is that the approach they took for the treatment of the body was more holistic than what we have now. There was a relationship between the doctor and the patient that you cannot cultivate in the 15 minutes you may have to speak with a patient now. There was an emphasis on the treatment of the whole person, which meant taking into account what they ate and what they did for a living and what they did in their leisure time that you may never know about a patient now. The prescription of medicine was given with far greater care and with an honouring of how these medicines might affect the rest of the body. Western medicine has never been as holistic as Eastern medicine, however, we are looking towards pharmaceuticals to solve all of our ailments, without looking far closer to home first. And to be fair, it’s not just physicians or pharmaceuticals, it’s the patients too who want these “quick fixes,” without regards to how much of a chemical cocktail they might be putting into their body. I’m one of them. We all want to feel better. And we all want to feel better right now. But at what cost?

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My PSA: I’m not pushing the No Medicine/Totally Holistic philosophy. I fall somewhere in the happy medium. And I greatly understand the need for medicine. It saves lives. No doubt in my mind. What my message is here, is balance and respect for both the pharmaceuticals and for your body. I respect people’s decision regarding their treatment. This is my decision.

 

The cost equates to side-effects from medications that begin to impact your body and where you develop symptoms and other (possibly) long-term problems from these medications, which end up requiring more medications. It’s a vicious cycle and one that I’m half-convinced that pharmaceuticals count on to keep you as a patient. Think about the long-term revenue that both doctors and pharmaceuticals earn from those of us with chronic problems that have no cure? We’re cash-cows. We’re the Golden Ticket. Keep us functioning; keep our symptoms managed and you have steady millions of patients who have to be prescribed countless pills, including pain medications and who will never get better. Is that not the perfect plan? But what about those of us who aren’t content with managing symptoms? What if we dream of something better? What if we dream of something more than “conveyer belt medicine,” where you’re rolled through in 15 minutes and written a prescription by a specialist who doesn’t care about x and y problems and only cares about z. Our body, our future; we need to advocate for ourselves this balance until our medical community is once again reminded of its roots. 

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You Only Think You Know Tired

To those of us with chronic illness or autoimmune disorders; to those of us with chronic pain, being tired has taken on a whole new level of meaning. It’s something that without meaning to, becomes this group of exclusivities, where you find yourself saying things like, “You don’t know unless you’re experiencing it.” Which, sad to say, is true. And in one fell swoop, gives you all the perspective you will ever need because you suddenly have this point of view of what it was like before you were sick and after. My life has suddenly taken on a B.R.A. [Before Rheumatoid Arthritis] and A.R.A. [After Rheumatoid Arthritis] among other fun comorbidities, like I’m some epoch of history. 

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But how do you explain to someone who is healthy how you experience fatigue? Especially when people use it so commonplace and not necessarily wrong? Fatigue like pain can be relative and what they are experiencing is relative to what they have experienced up to that point. They don’t have a wider point of reference like you do now, and that doesn’t make them wrong. It just means that you have to paint the picture better. So how do we do that? It can be extremely frustrating for the masses of us out there who are trying to explain to friends, family, bosses, or anyone else what we experience when we tell them how tired we are and their response is, “Oh yeah, I know. I only got four hours of sleep last night.” It’s one of those moments where you want to face-palm because you get it- you feel sympathy, but you also know its way beyond 4-hours sleep.

Fatigue is like treading through a vat of Jell-O for hours with no sleep, after running a marathon and lifting weights while you are feverish, have flu-like symptoms, are suffering from a migraine and have swollen, aching, joints. It’s all of this compounded with needing to keep up with your work and home-related activities and anything else that is expected of you, while you feel like your body is leaden from exhaustion and you wonder how you are going to type the next sentence on the computer, because your eyes want to close and your fingers don’t want to work. It’s always pushing yourself about 150% just to make it to about 30% of functioning. And no one understands it. Not unless you are living it and going through it and trying to figure out how you are going to manage from the day. I could try to explain it to you and every other chronically ill person who deals with it could try and explain it to you and still, you’d only be able to grasp the tip of it. A theoretical understanding of how it is to live with chronic fatigue, because until you are in it, experiencing it, unable to call in sick afraid you might lose your job, having to take care of sick kids and a family despite not being near 100% yourself and struggling everyday- you’ll never get it. Not ever.

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But does not understanding it means that no compassion can be extended to those suffering from chronic fatigue? Does it mean that those on the other side of this, must continue to look at us with scepticism? I would hope not. I have never adhered to the philosophy that you have to experience something in order to offer some kind of empathy. I understand I might not ever understand it in the way the individual experiencing it will, but I can try to understand what they are going through and I can try to ease their suffering and perhaps educate others. People should not have to needlessly suffer at the hands of ignorance, and this is why I do what I do. So, if you know someone who says they experience chronic fatigue, or you experience it and have someone who doesn’t understand it, maybe reading this will help them a little.

 

Curveball

Every now and then I go completely off topic from what my blog usually covers. I’m human, right? And there’s a lot going on up in this noggin’ besides what I’m usually obsessed with, and that’s, of course, chronic health. But there’s something that ties in very close with that, that was very much the brainchild of this blog and that also ties in very closely with mental health also and has kind of crept it’s nasty way back into my thoughts recently.

 

Weight.

I think it’s probably been the subject or obsession of every woman, at some point of their lives and I think most all of us have some degree of an unhealthy relationship with our body and our weight. For me, my body image was always entangled with a number. A number defined how fit I was, how beautiful I was, how healthy I was. That number, in turn, became the object of my obsession and it didn’t take long before I was caught in a very dangerous game of purging and starving in order to be thin. I think at my thinnest I was in the ’90s and that was after two children and feeling like I had the illness beat. I didn’t. The illness simply shifted its centre.

Twenty-something years later, many more health problems than I’d begun with, and I’m about 30lbs heavier than I’d like to be and that’s about 30lbs less than I was at my heaviest. Several major surgeries, not accustomed to being sedentary, eating more than I used to out of depression and I packed on the pounds. The first 30lbs were pretty easy to shed because, well, let me be completely frank here. I am a professional when it came to starving myself, and what I didn’t starve, I purged and 30lbs came off lightning fast. The rest has kind of stuck around for the last few years and I’m pretty desperate to lose them. But my body has changed since I was in my 30’s. I didn’t have my left hip replaced, the lower lumbar spinal fusion and sacroiliac joint fusion and I didn’t have the gut issues, fibromyalgia, rheumatoid arthritis, degenerative disc disease, or psoriatic arthritis or the ankylosing spondylitis. I still had the migraines, but you throw a good migraine into the mix now and I’m just down for the count. I can do some yoga, but the yoga I can do is not designed for weight loss. It’s designed for gentle or deep stretches and helping with the hurt parts. I think of myself as an excellent researcher, given what I do for a living and I can’t find anything on what someone like me can do to lose weight successfully, without exercise, and as someone with a history of body image disorder, it’s torture. But you don’t have to have experience body image disorder to feel the pressure. All you have to have experience with is being a woman and men feel a lot of the pressure as well.

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We are bombarded with thousands, if not millions of images of scantily clad, photoshopped models on a daily basis. Smooth flat belly. Beautiful, bountiful breasts. Satiny skin. Tiny waist. Hips not too big. Ass plump but not too big. Thin here. Curvy there. Combinations that are simply not possible with genetics. This onslaught of images, that extends to movie representations, begins from childhood through our teens and whether we realize it or not, we are constantly judging ourselves and comparing one another against these fictitious representations of what women should look like. The outward judgment of one another is brutal, but the inward judgment that we hand down on ourselves might as well be labelled savage, with a side dish of merciless and level of sadomasochism that would make Mr. Grey pale in comparison. Any woman knows this. You know this. And yet every day we go out there and we inflict the pain of judgment on one another and ourselves without even a second thought. Some of us even inflict this pain on another girl/woman, in groups, gang-style. Abusing and harassing viciously, in person and on social media. It’s really not surprising so many women have issues with body image that leave them susceptible to other problems.

OCD scale

But what happens when a girl, like me, finds herself trapped in a body like this, with no way out? Ever toss two cats into a burlap sack? Only one escapes alive. All humour aside, it’s hell. I don’t own a scale. My daughter does, but I don’t and I usually forget it’s here. I get weighed every 4-6 weeks, for a variety of doctor appointments, and while I am aware of the numbers, the numbers don’t rule my life, the way it would if I lived with the scale. Numbers are very bad. They trigger my OCD and I can get very wrapped up in them, which leads me to my other option for weight loss in my current condition: Calorie counting. The #1 way to effectively lose weight in my current condition, might as well be a nuclear bomb. I was perusing some diet plans on Pinterest and just looking pushed my heart rate to 110. How do I know this? I got an alert from my happy little Apple watch. Some days I really love my Apple watch. Other days I just wonder if I was better living in blissful ignorance. My point here being, I feel like there is no option for me and it leaves me feeling helpless and angry and depressed. I am not without the drive and I feel like I have researched quite a bit, but it’s also exhausting being me and it’s a full-time job just researching all these different methods that -abled bodied people can do to transform and lose weight. I get enormously discouraged and on top of all of this have to fight those old tendencies not to starve myself or purge (though with my current GI issues, it’s a lot less tempting) until I’m more or less left with option C, which is just trying to accept me, for me.

NGU

You can see where this is going right? The vicious circle of doom? I’m not sure whether or not to call this irony or tragedy or maybe a dark comedy, but what I can say is that it sucks. Before I was too young to understand everything, my brain was being blitzed by images that would alter my perception of myself, leaving me to seek this impossible perfection that would never come to fruition. Now that I understand this, my psyche is already damaged to a point where I may intellectually understand this but I struggle when I look in the mirror and then as an added insult to injury, I am chronically ill to the point that exercise as I once knew it is a dream and so I struggle not only with my illnesses, but my weight and how I see myself and I often feel trapped. That is one hell of a curve ball I never saw coming at 13. But, I’m not the kind of person to just give up. In fact, it just makes me angry, which gives me just enough energy to keep on researching. If I find the answer, I’ll let you know.

As always, thank you for reading and being a part of my world.

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Being Told to Give Up

If you follow me on Twitter you’ve learned that I found a new pain management doctor. Not because my previous one was horrid (I know you can read a lot of horror stories on various blogs) but because our vision was going in different directions. So, I found a new doctor and he’s great. My first time seeing him where he evaluated me, he had this great idea for an intrathecal pump. Now, for of those of you who do not know what this is, it’s a pump that is implanted into the flesh of your belly and where the thin, catheter tubing goes up into your spinal cord and the medicine would go directly into your spine. This eliminates the medicine having to detour into the liver, and with the medicine going directly into your spine, it also allows them to give you much lower doses of medicines like morphine, to help with the pain. This all sounded pretty good to me, minus the pump implant and catheter tubing that has to go into the spine, but the theory behind it was great. Better meds and bypassing the liver. Cool. I scheduled a trial, where they deliver the pain medicine to the spine via spinal tap to see if it will help. But I had to be cleared by a few doctors, one of which was my neurologist who hit the brakes hard. So much so that I had a head-on collision with this great idea. He would not discuss it without actually seeing me so I made an appointment and sat down to talk about things.

It began with the fact I had a seizure in January, and because he is a neurologist he knows exactly what the intrathecal pump is and how they would do it and because we have no idea why I have these seizures (undefined seizure disorder), he is afraid that I might have a catastrophic seizure during the procedure and end up in bad shape in the hospital. Okay, I thought. Do I have to wait a few months to be seizure free? What if I wait and everything is fine and schedule it and have another seizure before the procedure date? I’m pretty sure he could see the questions racing in my head by the expression on my face and that is when he stopped me cold.

“I don’t think you should have it done at all. I think you have to accept you are going to be in some amount of pain, and possibly significant pain, for the rest of your life.”

Let me say that he’s been treating me for a long time. He can be abrasive and won’t shy away from telling you he’s an asshole, but he’s the farthest thing from an asshole. What he is, is honest but sometimes honesty is not something you want to hear as much as a version of honesty that offers some hope. There was no hope in his statement and I cried with the impact it made on me. There was nowhere to turn, nowhere to hide. All I could think was:

“But why?”

He gave me a lot of reasons. The seizures. The fact I’ve had several failed back procedures. The fact I’ve tried many things already, to help with the pain that has not improved my situation. Finally, what he feels is the biggest reason: I’m Bipolar. Why is this the biggest reason and why should it matter that I am bipolar or not? I didn’t understand even after he explained it until I began to research it. Me, the person with bipolar, had to research why her bipolar was the biggest reason to give up. Why was my mental illness the sudden obstacle between me and the Holy Grail of cures?

The theory is that there is a link between chronic pain and bipolar, one which worsens chronic pain and symptoms of bipolar over time. The idea is that psychological pain comes with depression and that depression worsens chronic pain. One big vicious cycle. In learning about bipolar you understand that physical pain is often an underlying symptom of anxiety or depression. For example: “Muscle aches, chest pain, gastrointestinal cramping and other types of pain can be symptoms of bipolar disorder. They can also coincide with bouts of extreme fatigue. Aside from the emotional trauma of depression, these symptoms can only add to the burden, especially since they may not go away with traditional pain treatment methods.” [https://blogs.psychcentral.com/bipolar-laid-bare/2016/09/bipolar-disorder-is-linked-to-chronic-pain/] As I read, I was kind of blown away. It suddenly hit me that maybe bipolar and chronic illness were a tandem unit in which the one (bipolar) made the other (chronic illness/pain) more difficult to treat and perhaps, vice-versa.

It’s been almost two weeks since that appointment and it feels like I’ve spent all of it ruminating on his dispiriting words. My mood has been terrible. I’ve been at turns, bitchy and emotional and picked a fight with my husband for no reason. When I apologized to him and we talked about it, I explained to him all of what I was thinking and blamed it on my bipolar. He shook his head and simply told me:

“You’re upset because he took away your hope.”

This shouldn’t have been such illumination to me but it was. While I understood everything that my doctor told me and everything the research, I had read concluded, does it give someone else, like a doctor, the right to single-handedly, extinguish the possibility of hope? Not for me, although I understand his intent and I don’t think it was maliciously done. The problem lies in the nature of chronic illness and chronic pain and how it affects the psyche of the individual suffering. It diminishes hope. The physical deterioration can be slow for some people, where things that we could do are slowly taken away one-by-one, while for other people it can feel as though you went to bed healthy and woke up in such debilitating pain that you can no longer walk, but the hope that ebbs away is real no matter which side of the spectrum you are on and I believe we need every shred of it.

I understand that this intrathecal pump may not be the best option for me. In my personal case, with seizures of an undefined origin, it may be too risky. I’ll even extend this understanding to the bipolar disorder, but only because I understand on an intellectual level that it may have a hand in my pain. However, as to what role it may play in this drama, among which all these comorbities of mine play? The jury is still out until I see some very thorough studies. I can see that on one hand it may unlock many mysteries pertaining to chronic pain and illness, but on the other I am afraid it may de-legitimize the pain and illness of many who suffer if we simply chalk it up to the by-products of mental illness. My final thought here, which was the purpose of this post to begin with, is that I don’t believe it is right for anyone to take away the hope of a chronic illness/pain patient. Hope is one of the few things we have left. It is sometimes the only thing that keeps us going. If you are a doctor out there, reading this, please, protect your patient from un-needed or dangerous surgeries, but do not take their hope away.

Arthur’s Place

Today I wanted to share with you a special website that is geared toward helping young adults cope with arthritis-related illness. Andrea McBride is a Rheumatology nurse specialist who set up this site called: Arthur’s Place, a private social group that has a global reach for young people age 18-30 with Arthritis and related conditions.

I am impressed with the site, the information it provides and the quality of articles within. If you are a young adult, newly diagnosed with a rheumatoid illness, I think this website could give you a variety of information that you would not get from a doctor as well as being able to connect with other young adults across the globe via social media. They are also a non-profit, so any merchandise that is purchased goes directly into funding Arthur’s Place, which is helping the rheumatoid community.

 

Check it out!

The UN-Glamor of Anxiety

Are you looking at UN-glamor and wondering why? Does it bother you from a purely grammatical perspective or is it causing you to pace and pull out your hair, possibly making you twitch?

Anxiety can range from mild to severe, some people function very well with it and others don’t, but the interesting thing about it is that we’ve all experienced it. It may have manifested in the anxiety we often feel as children when we are first separated from our parents or before texts. These are things that are common to feel anxious about. But anxiety can quickly become a problem which is all-encompassing and one that can make day-to-day life, difficult. Anxiety before a test, that causes the individual to vomit repeatedly, is not average anxiety. The anxiety that comes over you like a dark cloud and makes you feel as though there is some great, threatening danger and prevents you from going to work (which I have felt), is not average anxiety.

Anxiety can also be a by-product of other things like chronic illness or OCD (Obsessive Compulsive Disorder).  Why you might ask, would chronic illness spawn something like anxiety? In my personal experience with it, because of the unpredictability of my symptoms, never knowing how I would feel from day to day and the possibility of needing to call off work sick and lose my job, made me incredibly anxious. In dealing with OCD (Obsessive Compulsive Disorder), there was the anxiety brought on by shame.  It was being cognitively aware that my feelings were irrational but unable to stop feeling it. It was being afraid to go in public and carry on with my normal activities because I was afraid of having a panic attack brought on by my anxiety of certain situations. It was anxiety brought on by just attempting to carry on normally, and knowing that my attempt at illusion was failing and shattering beneath the weight of it all.

The-Side-Effects-Of-Anxiety

What angers me most about the perception of anxiety is that it’s somehow this adorable little quirk in women, which women use as some kind of sonar device to attract potential mates. Because of course, women need saving, whether it’s from the “bad things” outside, or ourselves. Pardon me while I eyeroll a moment. None of my anxiety, panic disorder, bipolar or OCD ever helped in the guy department. In fact, I actually attribute it to the disaster of my first marriage, which other than producing two, beautiful children, was toxic in all ways. It’s difficult to find someone who can see past the messy of mental illness and find you, under it all. I felt broken. I felt very UN-glamorous and not at all cute.

Although my focus here is women, I wanted to comment on our male counterpart. I think that because anxiety and mental heal issues are romanticized with women that it is actually the reverse for men. If we think about our society for a moment, and how men are the tall, strong, handsome ones who do the rescuing, that this idea puts men who are struggling with anxiety and mental illness in quite the conundrum. Not having any statistics handy, I would wager that many men try to cover up their anxieties much more than women, trying to appear normal and trying to have relationships. I can imagine the difficulties that this brings them and the sheer exhaustion of trying to keep up with this illusion, before they, too, shatter.

I still struggle with anxiety. Going out into stores is possible but I still wouldn’t ever step foot into the grocery store on weekends. I can’t recall the last time I was physically at the mall. I am unlikely to ever do any of the brochure-highlighted tourist attractions, and will instead opt for something more rural, less popular. My education has been something of an odyssey, I am painfully aware of my test anxiety and as equally aware of my social anxiety. My OCD is better than it was, but I freak out a little when we have to divert from a familiar route to any place we go. This can include heated arguments and tears. The bipolar is a different breed of the monster of mental illness but I am in a good place. Some days it’s harder than others. I do not view my life with my anxieties or mental health issues as glamorous, nor do I think you would. It’s been a rough, ugly road to get to the place I am now. If you are in that rough place, I would ask you to get help and stick to it. If you know someone in that place, don’t give up on them and keep trying to push them closer to help. If you don’t have these issues, I would tell you not to fall for the glamour of how they try to sell it in the movies or T.V. because it’s not anywhere close to that. Lastly, I’d ask everyone to advocate for positive mental health discourse. It shouldn’t be something anyone is ashamed of and being educated about it may mean you get help for yourself or someone else sooner.  

 

*The image is me and I used Photolab.

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