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Being Your Own Health Advocate

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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

susie signs a contrat

 

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:

advocate

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

8 Weeks Gluten-Free

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It’s been roughly, 8 weeks since I began my journey into a gluten-free lifestyle. There’s been a lot of reading, a few incidents of accidentally being glutened and the continued frustrations of my tummy still not progressing in the manner I want. But I imagine all of us who are struggling with gastrointestinal issues, diarrhoea and unexplained nausea and vomiting would like answers and a return to normalization.

Where gluten-free has become the topic of trendy conversations, and the latest in fad-dieting, for those of us with chronic tummy issues, non-celiac gluten-sensitivity or celiac disease, Crohn’s, IBD or IBS this is a very serious issue. Going gluten-free has become a lifestyle choice and sometimes necessity that has vastly improved the gut situation and while hearing something like being “accidentally glutened” might sound funny, and is perhaps being said to provide a little levity to a serious situation, the consequences of being “glutened” can be very serious. Just ask anyone who’s suffered the effects of accidental cross-contact. (Which is different than cross-contamination.) Cross-contamination: Cross-contamination is a term that implies that a food has been exposed to bacteria or a microorganism, which could result in a foodborne illness like salmonella. By definition, it can lead foodservice and other industry professionals to believe that if a food is “contaminated” by gluten, they can simply “kill off” the contaminant. However, gluten is a protein (not a type of bacteria) and proteins cannot be “killed off” using heat or disinfecting agents like most bacteria can be. Cross-contact: more accurately reflects that a gluten-containing food cannot come into contact with gluten-free food. This is actually a really important distinction because to be able to speak the same language that chefs to when you are away from home will allow you to have a better experience dining out and explaining what you need. (Beyond Celiac, n.d.)

I’m still learning a lot and I’m by no means an expert. I’ve been reading blogs and books and trying to learn as much as I can. The thing I find most difficult about being gluten-free is balancing how many stores bought [gluten-free items] I want to get and how much I can make at home [from scratch], given that gut issues aren’t my only problem and while I wish I had the energy to be the Martha Stewart-type, because the fact it is, besides writing I would say cooking is my other passion and DIY stuff a close third. But there are only so many things I can do and the energy it takes to prepare a menu for the week, go shopping and cook, is about the size of it. There times, where I do enlist a bit of help to, can things, or have made bread and frozen it, or have prepared meals and frozen them and have been glad for it for I’m not sure how much more time-consuming gluten-free meal planning would be. I’ve looked at a few things, like bread making, because buying gluten-free sandwich bread at the store is ridiculous in price and I have my youngest who is getting ready to switch over and possibly my oldest as well, who’ve shown already to have my gut and inflammatory issues- my oldest already being diagnosed with R.A., while my youngest has only been diagnosed with inflammatory arthritis. If we can stave off a diagnosis, simply by changing her diet she felt it was worth it especially since she has a lot of tummy issues already. But with bread prices between $7 to $12 per loaf, we were wanting to make it ourselves if possible. She’s an amazing baker so I’m hoping to find a recipe that is worth the time and effort. If you know of a good one that you’ve tried, please send it to me!

So far for me, the results are worth continuing even though at times it can be trying. I’ve lost 11 pounds. My gut issues have calmed down about 80% and although they haven’t been eliminated, I can’t attribute the near resolution of it to anything but the change in diet and that unresolved 20% could still be because I haven’t mastered this lifestyle. There are many, many places where gluten can lurk, that I am still learning and there are many names that gluten can go by that I am also learning. Reading labels is very important. This where I am just going to drop this link: Celiac Organisation They have some great information to follow if you’ve just recently discovered you can’t do the gluten thing. It’s not as easy as you may think and just jumping into it blindly is not the way to go. Not if you want to truly give your gut the best chance to heal.

I’ll be giving regular updates on my Gluten-Free life and I’ll even drop some recipes that I love. I’ve discovered some recipes and products already that have made going Gluten-Free bearable and even, dare I say it, enjoyable. So, stay tuned. It’s not as dreary as it seems. You can do it. Do a little research, give yourself a couple of days to enjoy the last of the gluten before you plunge into it. But no cheat days! If you are really sensitive like me, cheat days mean sick to your stomach and that’s just not good at all.

You Only Think You Know Tired

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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. 

BC Comic2

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

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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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Holistic: Whole Body Medicine

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Recently, last week to be exact, I had a colonoscopy and endoscopy done to figure out what has been going on with my stomach. My issues have waxed and waned since 1998, sometimes being horrible, to the point I lost 20lbs and then got better, where I thought I was healed until my stomach reminded me on no uncertain terms that it had not relinquished its hold on me. After 21 years and have finally had enough I sought another opinion, but because it had been so long between doctors and tests, it was recommended that I have more testing done. So the colonoscopy and endoscopy were scheduled and I went in to have it done.ernies-first-colonoscopy-2-b
For any of you who had had it done you know the prep is both an inconvenient and humiliating experience that is difficult to tolerate. This is doubled when you are already having troubles with your stomach and makes the entire experience that much worse. I had the terrible misfortune of my procedure being scheduled for 7am which meant that the prep had to be done at 6pm and then at 11pm, which meant I got little sleep. As a pain patient, this made my pain exponentially worse, and I would find out later, recovery time for the procedure much longer than even I anticipated.

The procedure went off without a hitch and I woke up to the news that I had an ulcer as well as some pretty alarming gastritis. Okay. I was more alarmed at the ulcer because I knew what could be the cause of it but I was so tired from the anaesthetic I didn’t really worry about it. Later on in the evening, I read what they sent me home with: I had chronic gastritis and a chronic gastric ulcer.  I have to make a follow-up appointment, but in big bold letters on the top of the page, it read: Voting and protest concept

NO! Aspirin, Motrin, Advil, Naproxen and Ibuprofen. I had to read it a few times to process it for a few reasons. Among my myriad of health issues are Rheumatoid Arthritis, Psoriatic Arthritis, Inflammatory Arthritis and Migraine. I use Naproxen all the time and The Excedrin I take has Aspirin, and I take Motrin or Ibuprofen or Naproxen daily. What the hell was I supposed to take? Though I don’t think my anxiety was directly responsible, I proceeded to get a migraine that lasted four days after this. Make what you want of that.
Luckily, my youngest and I had an appointment with our neurologist and after he spoke to my daughter about how her meds helped and got around to me I was finally able to get everything off my chest and his expression and response was priceless.

“Well, that’s just hogwash!” he shook his head, reading over what had been written there on the top of the findings and just looked at me with irritation in his eyes. “This,” his finger tapping against the page, “this, is why I hate my colleagues. You have to look at patients holistically. You may not be experts in all of the other things that might trouble them, but you have to be able to understand them because you can’t just go NO with a big red marker, and expect them to live.” He continued to just sigh and shake his head.
My doctor used my favourite word. Holistically. And he used it in the way it should be used. I have a lot of things wrong with me, for which I go to many specialists. But none of them gets on a conference call at any point to ask,conferencecall

“Yo..how are we going to treat this patient, Liza? She’s got this wrong with her Bob, that’s your turf. And she’s got this wrong with her, that’s your’s Jane.” And so on. No one is looking at me or you as a whole person (or very few are) and I truly believe that presents a problem when we are endeavouring to feel better. At this point, I am not looking for a cure. I am not that naïve. I know there is no cure, I know there is no one out there who can give it to me. What I am looking for now is quality of life. I want to have the best quality of life I can so I can enjoy my life as pain-free as possible. But if you can imagine this: large office space with cubicles and in each cubicle is your specialist and then there is you, the patient, standing somewhere outside the building. All these doctors are trying to help you, as you come in to see them but never as a whole. How is that even possible? If you were in a hospital after a major car accident that affected many parts of your body, the doctors would be consulting one another as to the best course of action to make you better. But for whatever reasons that you might need 5 or ten specialists, none of them would ever think to call the other to try and figure out how to treat you together. We’ve forgotten how to treat a person a holistically and because of that I truly believe that patients needlessly suffer or on top of being patient, we have to become P.A. and manage all our symptoms and medications, bring them to each specialist to see if there anything we can do better to treat the myriad of symptoms. I know we’re messed up, complicated, a challenge, but isn’t this why they went to medical school? Not everyone is an easy open/shut case. It’s times like these I wish there was a House, M.D.

 

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I am: An Un-Apologetic Opioid Patient

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I take opioids. I have been taking them now for almost 4yrs. Opioids don’t eliminate my pain completely, and there are some days that I still can’t function, but they have allowed me some semblance of a life. I can not emphasize semblance, strongly enough. My world absolutely changed when I began experiencing pain and the symptoms of my chronic illness, that I did not know at the time. I pushed myself through it brutally, until I couldn’t do that anymore either.

Before I became sick and plagued by pain, I was an active mother and student, trying to finish my degree at the University of Houston. I loved yoga and while I still practice, it is very cautiously and with different expectations than what I do now. My dream was to continue school and either get a Master’s or a certification that would allow me to work in public health. I love contagious disease. That sounds grim, I know, but it was a passion of mine to be able to protect people from unseen killers, of endemic diseases. I wanted to protect my community. I never got to finish school, one class shy of a degree, because my health hasn’t been very cooperative and my pain makes it difficult to focus.

I take opioids regularly throughout the day in order to blog and participate in my family without the pain preventing me from enjoying life. I still need help with every aspect of my life, and without my children and husband there to assist, I am not certain what kind of life I might be living. It’s easier asking my children for help now, but when they were younger, I often didn’t and pushed through the pain which would leave me useless for days. How do you ask children who are in trying to juggle a full-time job and college courses, or high school classes which include dual-credit, to take time out to help you with chores that are your responsibility? As a mother, you want them to excel and do better than you did and while having them do their own chores like: cleaning their room or cleaning their bathroom and doing their laundry is acceptable, things like: taking me to doctors appointments because I can’t drive, or making dinner because I can’t, or picking up and taking siblings here and there because again, I can’t drive, make you feel guilty. I didn’t have children so they could take care of me. My chronic pain took away some aspects of motherhood, and also took away some aspects of my kids’ childhood.

I’ve taken other pain medications. A whole bunch that I either didn’t tolerate in some fashion or simply didn’t work as well as the opioids. Do I want to take opioids? Not especially. I take a lot of medication. I often worry about the effect these medicines are having on my liver. After taking them for nearly 4yrs., I also know their effectiveness is beginning to wane. They are just not doing what they used to which leaves me in pain again, more often than when I first began taking them. This, of course, makes me wonder what next? What drug will they eventually try that will also wane too after a few years? But the flip side, the person still dwelling within me who wants to experience as much life as I possibly can and enjoy it without being in crippling pain, doesn’t care. Whatever the next opioid may be, I will try it because to not take these drugs means to give up and die. I’m not ready yet. Sorry.

Which brings me to this opioid war. I get it. I get that people have lost loved ones and I understand how tragic and senseless it is. What I do not understand and what I read and hear time, and time again, is how opioids should be abolished. But which opioids exactly? This is the blurry line which is affecting all pain patients and which angers me. For example this quote from CBS News: “Approximately three-fourths of all drug overdose deaths are now caused by opioids — a class of drugs that includes prescription painkillers as well as heroin and potent synthetic versions like fentanyl.” [https://www.cbsnews.com/news/opioids-drug-overdose-killed-more-americans-last-year-than-the-vietnam-war/] You see information like this and the average reader is only seeing the first part: three-fourths of all drug overdose deaths are being caused by opioids. Lost in this message is the latter part, explaining that these drugs include prescriptions, heroin and synthetic versions like fentanyl. Neither do you hear things like: Synthetic opioids, like fentanyl, are the main driver of drug overdose deaths, making up more than 28,000 of opioid-related deaths in 2017.” And then even less are you hearing this: “Opioid prescribing has also been on the decline since 2010 and the number of prescriptions filled at retail pharmacies is at a 15-year low, according to the U.S. Food and Drug Administration.” [1]

These missing parts are an incredibly important part of the bigger picture. The bigger picture which includes patients who are suffering and needlessly dying because they aren’t receiving adequate pain treatment. We’ve gone from a period back in the 90’s which (and no one argues this), people were being over-prescribed opioids, to a period now, on the opposite of the spectrum, where people are being under-prescribed. Both sides of these extremes have consequences and we are seeing them now, in the preventable deaths of patients who were under-prescribed pain medication. You are hearing about cancer patients being denied morphine, until their final weeks after terrible suffering before their deaths. [2][3]

You are also hearing about post-surgical patients being given only Tylenol for hip replacement surgeries, despite the amount of pain afterwards. I’ve had total left hip replacement and I can’t imagine being able to do the required physical therapy without the opioids I was given, and the unnecessary suffering truly boggles my mind. [4]

I say you are hearing and seeing this information, but the truth of the matter is that you aren’t hearing or seeing about it as much as you should be and because of that, chronic pain patients are suffering out there. People in my community are dying because of the lack of information and the mis-information regarding opioids. Every time I am on social media, I will find articles being discussed about deaths caused by opioids. Just skimming through comments, I will read things like: It’s big pharma’s fault, all they care about is money; There’s a lack of morality within society when kids are dying from opioids and they continue to be doled out; Opioids need to be abolished; There wouldn’t be addicts if the drug was taken away. Comments like these, make my heart sink because of the black and white nature with which this Opioid Hysteria is being viewed. Opioids are not the enemy. Patients who need these drugs are not the addicts (though admittedly, a small percentage from this group do become addicts) and people who need these drugs are dying, because doctors are being criminalized for prescribing them, losing their jobs and making it more and more difficult for pain patients to be treated. The world had gone crazy and those suffering are being made to suffer more.

I am a pain patient. I take opioids and I’m un-apologetic about taking them. I’ll also continue to fight for those who may not be able to themselves, to end the needless deaths and suffering which have become the cost to this ridiculous war waged on opioids.

 

[1] https://www.superiortelegram.com/news/government-and-politics/4574090-advocate-opioid-crackdown-had-chilling-effect-those-chronic

 

[2] https://www.reuters.com/article/us-health-cancer-idUSKCN1PP26X

 

[3] https://www.bendbulletin.com/localstate/6033839-151/opioid-limits-hit-hospice-cancer-patients

 

[4] https://www.acsh.org/news/2019/03/13/oral-and-iv-tylenol-work-equally-well-hip-replacement-pain-do-they-work-all-13877

 

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Mobility Aids

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And why we need them.

 

 

Once upon a time, not so long ago, I was ignorant of what disability might mean from person to person. There was this idea that people who were disabled couldn’t walk- meaning they were paralyzed in some way, or they were mentally handicapped in such a way that they could not function in society. It was a pretty black and white interpretation. Even when I was diagnosed with bipolar, anxiety disorder and PTSD, it never occurred to me I was disabled. Even though I would come unglued every time I received a summon for jury duty and needed to have my psychiatrist write a letter explaining why I could not go, or when I was forced to drive on the freeway to a place I was unfamiliar with (and at times familiar with) prior to my seizures and my grip was so tight on the steering wheel they’d go numb, even though assault scenes on T.V. triggered panic attacks and fits of crying, I never thought I might be disabled. I still did not see myself as someone with a disability when I received my handicap placard in the mail, because of my physical limitations and pain that made it difficult to walk through a parking lot to get to a store. And I still had difficulties seeing myself as disabled even after the purchase of two canes, which I mostly use when outside of my house, feeling safer as I try to manoeuvre through unfamiliar landscapes. What I have learned is that disability comes in all forms and just because I don’t use a mobility aid all the time doesn’t make me any less disabled and doesn’t mean I don’t need it.

 

Wheelchair: As defined by the Oxford Dictionary: “a special chair with wheels, used by people who cannot walk because of illness, an accident, etc.” [https://www.oxfordlearnersdictionaries.com/definition/english/wheelchair?q=wheelchair]

 

What I love about this definition the most is that it explicitly says that wheelchairs can be used by people who cannot walk because of illness or an accident. It never mentions being paralyzed. I get so upset when I hear about those within my community who are harassed by -ableds, because they are seen getting up from a wheelchair to get in the vehicle and have the audacity to call it out as though they were doing something illegal. Here are some types of invisible illnesses that might cause a person to need a wheelchair:

 

·       Rheumatoid Arthritis: Individuals suffering from this type of arthritis may use a wheelchair to help them burden some of the pain they are having. This would include pain in the lower limbs, where the individual can no longer walk or stand without the assistance of a wheelchair. Use of wheelchair varies from diagnosis, not all people suffering from rheumatoid arthritis will require a wheelchair. [https://www.karmanhealthcare.com/medical-health-issues/rheumatoid-arthritis/]

·       Epilepsy: It occurs as a result of electrical signals being sent in the brain, which causes an overload that results in ongoing seizures. People with epilepsy vary in symptoms, some people who suffer this illness just stare blankly during a seizure, and others have violent convulsions as a result. Use of a wheelchair prevents concussions that might be sustained during a fall. [https://www.karmanhealthcare.com/medical-health-issues/epilepsy/]

·       Neuromuscular Disorders: include a variety of conditions, such as muscular dystrophy, multiple sclerosis, and ataxia, which result in degeneration and atrophy of muscle or nerve tissues. [http://disability.illinois.edu/instructor-information/disability-specific-instructional-strategies/mobility-impairments#2]

·       Fibromyalgia: a form of “soft tissue” or muscular rheumatism causing constant pain in muscles and ligaments. Inactivity, depression, anxiety, chronic fatigue and sleep loss are common. [http://disability.illinois.edu/instructor-information/disability-specific-instructional-strategies/mobility-impairments#2]

 

This is not an exhaustive list by any means. The point here is, people can use wheelchairs for many reasons and the use of them can drastically alter their quality of life.

 

 

Canes and Walkers

 

No fancy definition here. Canes and walkers provide balance and support to the individual using them, assisting in avoiding falls and possibly helping to keep weight off an injured foot, leg, or hip. The difference between cane and walker is: you can support up to 25% of your weight on a cane and 50% on a walker. [http://www.networkofcare.org/library/10_canes_walkers.pdf] Many of the reasons listed above, save for epilepsy, may require the use of a cane in the infancy of the illness, before needing to move on to a walker as the illness progresses. This is not an exhaustive list of reasons why a person may need to use a cane or walker. The point again, that these mobility aids can drastically alter the quality of life, giving a person freedom where they were limited before out of fear of falling.

 

I’ve shared with you why mobility aids may be needed and that they can drastically improve the quality of life of someone struggling with a disability, but here are a few reasons how:

 

·       Access and convenience: If you only feel safe in your own home, you can become isolated and chronic illness and pain are already incredibly isolating. If you are unable to walk around at venues because your pain or illness makes the walking around difficult, a mobility aid can open doors for you. We all have lives that we want to participate in and mobility aids give us that ability, whether it’s a lot or a little. The choice is there, just like in the lives of an -abled person.

·       Caregiver safety: We often speak about them, and we rely on them every day. It’s a tough job being a caregiver and one that only becomes monumentally more difficult when a caregiver is also responsible for transporting a loved one. Accidents can happen and mobility aids can lift this worry from the caregiver, allowing for them both to enjoy more things to do and places to see when the person feels safe getting around.

·       Quality of life: When you look at access and convenience and caregiver safety in conjunction with the individual’s health which precipitated the need to begin with, you are looking at quality of life. Being able to get out easier can give a person purpose where they might have thought there was none, and purpose can contribute to a higher, over-all, wellbeing. We need that.

 

My parting thought on this: Mobility aids can be an absolute game changer for people with chronic illness/pain and other disabilities. Just because you can’t visually see the impairment, doesn’t mean they are “cheating.” It also doesn’t give you the right to call them out, humiliate them with a note taped to their car, or anything else. It’s already traumatizing enough losing your freedoms and abilities due to chronic illness/pain or accident, we don’t need your side commentary about it. You may find yourself in the same situation one day and you’d probably want people around to be understanding.

*Thank you for reading as always*

 

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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.

Fibromyalgia Awareness Day 2019: May 12

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Since my first time writing this, when I was newly diagnosed with Fibromyalgia, I have also been diagnosed with Ankylosing Spondylitis and Rheumatoid Arthritis. I have learned that the diagnosis of a chronic illness is a heavy burden to bear. You are faced with doubts from strangers and family as well as myths perpetuated by the internet. Our illness, while it may be invisible, is very real to us within the community and I feel so privileged to be among the many warriors out there trying to make a difference.

5 Myths of Fibromyalgia

  • Fibromyalgia is really a matter of being overweight. Get into shape and you won’t have the problems any more. It’s actually not an issue of being overweight, although being overweight does not help. The cause of fibromyalgia has not been linked to being overweight and many people who are considered to be very fit, i.e. Lady Gaga and Carry Ann Inaba, have fibromyalgia. We need to focus less on blaming the person and focus on how they can improve their lives and perhaps, improve.
  • Organic, Vegan, Gluten-Free, Non-dairy, or Inflammatory Diet is the cure. No, it’s not actually. You can certainly adhere to any diet you like and it may even benefit you in many ways for a variety of reasons, but it won’t cure Fibromyalgia. There is no known cure for it because we really don’t have a firm idea about why it happens in some and not others. It’s important to remember that we’re all unique and we’re all in different circumstances with different beliefs and what works for you or what fits in your life-style, may not work in others. Having respect for all warriors is important.
  • Choosing to treat your Fibromyalgia holistically means you don’t want to help yourself and the reverse of that. As I just said, we are all different and we all come with a predetermined set of ideas. Some of us will be open to try holistic measures, while others, who’ve only tried holistic methods, will be willing to try medicine. I’ve seen many fights regarding this and I don’t understand why. We all have to make decisions based on what is best for us and our family and also, very importantly, what is available to us.
  • It’s a Princess disease and just means you’re lazy. I really hate this one. It’s hurtful, not to mention mocking of a disease that is very real and very painful. Those of us who suffer with fibromyalgia are neither lazy or adverse to working. And those of us who find ourselves unable to work because of the illness are often devastated. The problem with this particular myth is that we get much of our identity from our job, not to mention money. Being unable to work and needing to rely on help is crushing.
  • Fibromyalgia isn’t debilitating. Here is another that makes me grind my teeth. It implies that all illness and all pain should be measured by some standard that is written in a book somewhere, when we know that illness affects people differently as does pain. How I process pain is going to be different than you and yours will be different than your friends and so forth and so on. I wish pain was viewed as uniquely as we are human. I wish it was respected and not compared. Fibromyalgia can be very debilitating for some while others manage it better; but even those who find it debilitating may go on with their lives, may perform activities which someone else with fibromyalgia would never consider and still, it makes it no less debilitating. I would use Lady Gaga as an example here again, because she performs in a way I could never do, but I would never dismiss her pain or say she was exaggerating. Her fibromyalgia is debilitating and so is mine.

Arthur’s Place

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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!