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.

chronicadvocates

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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.

telephonegame 

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.  

firstdonoharm

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?

soapbox

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. 

HealthyLife

 

 

 

 

 

 

 

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. 

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.

tiredmeme

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.

 

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.

You’re Not Really Disabled

There’s been a trend in my recent writing topics, that I can only define as WTF. I’m not being very eloquent about it, but there it is. WTF stretches a broad range of experiences that I’ve discussed both in my blog and for National Pain Report. One of my doctors telling me he doesn’t believe I need a cane, based on my MRI, but not offering me an explanation as to why I feel I need it because I’m unsteady on my feet, bumping into walls and my knee giving out on me. But it’s perfectly okay to shame me about using it and offer physical therapy as the Holy Grail of cures after three years of procedures and surgery. There’s also been the well-meaning “I hope you feel better,” that while well-meaning, becomes an irritation after you’ve explained your situation multiple times and are not truly heard. Something I haven’t written about but will be covered soon, that also falls into this, WTF feeling, is when you are made to feel as though you are faking your illness with those very people who are supposed to be taking care of you. I’m talking about the medical professionals in your own doctor office and hospital. Today, I’m discussing the very many ways that people (close to us as well as strangers) are in denial about our disability and aren’t afraid to tell us.

·       You’re not really disabled, you’re just fat: Yes, this happens. I have heard it time and time again and it makes me livid. I’ve never been explicitly told this, but I don’t think it matters. In my case, when I was just beginning this chronic journey and trying to figure out what was wrong, my first place to start was my PCP. Instead of sending me for tests or at least another doctor if they didn’t know what was wrong, I was given diuretics for my swollen fingers and forced to speak to a dietician who told me losing weight would be best for me and I should eat from smaller plates. Yes, she actually said that. My experience is a fraction of what people out there experience. I’ve heard of a woman who did not look obviously disabled, parking in a disability parking spot and when she returned, finding a note on her car saying that she didn’t actually need that spot because “she was just fat,” and she was taking spots from “people who actually needed them.”

·       Your disability doesn’t look like mine: This problem isn’t just among the -abled, it’s pervasive everywhere. The basic idea is that because your disability doesn’t look like mine, then you must not actually be disabled. This can be with anything, and I guess it’s because we are judging the progression of the disease or the severity of it through other people. The thing is, we are all unique creatures. Just because I have fibromyalgia and my neighbor has fibromyalgia, and we’ve both been suffering for seven years but I’m younger than her by ten years and use a mobility aid, doesn’t mean I’m not disabled or I am exaggerating my illness. I feel it is hurtful to make those insinuations about someone because we don’t know their entire medical history, nor is it any of our business. We should be supporting one another, not becoming part of this culture of undermining those who are chronically ill/pain. We have enough people doubting us, we don’t need more.

·       You aren’t disabled unless you are using a mobility aid: Almost contrary to my thoughts above, is the idea that you aren’t disabled unless you are using a walker or cane or wheelchair. I don’t know if this thought comes from the way the disability icon is drawn, with the figure in the wheelchair, but it is something even I had a bit of difficulty working my head around when I began using a cane and received a placard. People do not realize the wealth of issues that can prompt usage of a disability placard or identifying as disabled. A cane doesn’t make you disabled. Your disability makes you disabled. PTSD is invisible and the person can run and jump without issue, but needs the disability placard to get in and out of a facility quickly. There are many illnesses and many who have chronic pain but do not use a mobility aid, who are disabled but you would not see. Disability is not something you can necessarily see and society should understand that.

·       You’re not really disabled; you just don’t want to work: This has got to be one of my favorite misconceptions. While I will concede that there are some out there who would use a fake or exaggerated illness to get out of working, I don’t believe that the majority of us do this. Working compromises so much of our identity and is so important to our ability to survive and just support ourselves, that I believe most people who cannot work, truly can’t work. There is a feeling of guilt when a person comes to the decision that they can no longer work and it affects them psychologically too. I know from my own personal experience that you feel defeated and you feel betrayed by your body. You also feel diminished as a person and as though you are no longer allowed certain things because you don’t have your own money. It is a lot of work recognizing that none of this is your fault and feeling good about yourself again. Disabled people want to work. It’s the accessibility of work that is the issue and the reason so many who have a disability can’t work.

·       You aren’t really disabled if you only use your mobility aid part of the time: There are many who are pretty insistent that because I do not use my cane, 24/7, that I am not truly disabled. My humorous come back for this, because I can be snarky now and then, is, “Why no, my cane is actually a walking staff and I’m really a wizard.” After which I proceed to roll me eyes. Just because I feel safe to navigate my itty-bitty house, without my cane, doesn’t mean I am not still disabled. I cannot navigate outside terrain, from grocery store to parking lots without it because I never know what I might encounter. It could be a crack in the road or just someone who is inconsiderate and pushes their way in front of me because I am slow and I lose my balance. The cane helps me not to fall, it helps when I get tired from walking and begin to hurt. It’s my prerogative to use to help me feel safe in an unfamiliar environment. I think I deserve that. So, yes, I’m still disabled.

There are many more instances, but these were the first to pop into my head. Feel free to message me with your experiences and I will do a follow-up piece to this one. As always, thank you for reading.

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Chronic Illness: Oh, I hope you feel better soon.

We live in a world where being polite is reflective of manners. Someone sneezes, we say “God bless you,” whether we’re Christian or Atheist. It’s not an actual blessing, as Pope Gregory the Great uttered it during bubonic plague epidemic of the sixth century. [https://people.howstuffworks.com/sneezing.htm] (Just figured I’d throw some trivia in there for you. In case you’re ever on Jeopardy.) It’s just considered good manners and nobody thinks much of it. When you are sick, people often tell you to “Get well soon,” or “I hope you feel better.” Sometimes people mean it sincerely, and sometimes it’s just something people say because they are trying to be polite. Regardless, we don’t usually take offense to it and we say “Thanks,” and go on about our day. However, there are some of us who, while we may not take offense to it, are sick of being told “I hope you get better soon.” It may sound strange to you that someone would get upset over a seemingly benign offering to get better, but when you live with chronic illness or pain and aren’t going to get better, it can become aggravating to hear. Even more-so, is when you’ve addressed this, and your friends or family refuse to accept that “getting better” is not part of your story.

exploding-head

It is difficult for everyone to accept they have a chronic condition, especially at first. Chronic means that there is no cure, and that you will have to live with this condition until you die. It can be very daunting even for the most optimistic of individuals, but you eventually learn to live in this “new normal,” and that doesn’t mean you’ve given up hope, it just means there is a level of acceptance that healthy people are unaccustomed to. What I mean by that is, healthy individuals typically only have dealt with things like a cold or sprained ankle, or maybe a broken wrist where they had a cast for awhile or broken leg where they hopped around with crutches. Some, maybe deal with a chronic illness that is controlled by medicine and if they are careful, that is all it takes to keep them healthy. While still chronic, it is maintained so they feel good a lot of the time. Those like me, with chronic illness that is not controlled by medicine and only manages some symptoms, not necessarily all the time, live in another world.

Here are five examples of why telling someone like me, who has chronic illness, “Hope you feel better soon,” (and other things) can be irritating, and in some instances, makes us feel like our head is about to explode and what you might offer instead:

SheldonBoom

  • It’s been five years since I “got sick.” Either I have the longest flu in history or I’m not getting better.
  • We are only co-workers, but I’ve told you I’m chronically ill and you still pat me on the back and tell me “I hope you get better soon.” It’s okay if you don’t know what to say. I’d prefer “Is there anything I can do,” than anything else.
  • I’ve told you before I have a chronic illness. Somedays are worse than others, it’s just the cards I’ve been dealt. You don’t have to say anything at all. You could offer me a hug. Sometimes that can make all the difference.
  • Don’t lay hands on me and start praying over me. Don’t tell me Jesus has a reason and I’ll understand his purpose. Not everyone is religious and if Jesus has a reason, I wish he would have chosen to show it a different way.
  • I know you mean well when you say, “I hope you get better soon,” but it often leads to “How are you feeling today?” The latter is almost worse than the first because, I feel like I’m disappointing you when I say I’m no different than I am every day. And if I am having a good day, you think all the rest of my days should be good and it just doesn’t work that way. Ask me instead: “Is this a good day or a bad day.” If it’s good, be happy with me. If it’s bad, just let me know you are there.

Hellloooo!

Hello again, blogging-world. Miss me? I missed you. But I needed to take some time off for self-care. It’s been frustrating, to say the least. I think we can all agree, that when you suffer with more than one chronic illness, things can get a little hairy from time to time. Your body lets you know, in no uncertain terms, that you’re it’s bitch. (I really tried to phrase that more eloquently, but let’s face it, there’s nothing eloquent about this situation.)

If you’ve been keeping up with my blog, you know that I’m quite overwhelmed with several different things going on. If this is your first time here, I battle R.A., fibromyalgia, ankylosing spondylitis, IBS-d (but I think that is shifting to a mixed form), sacroiliac joint dysfunction, seizures, degenerative disc disease, psoriatic arthritis and migraine. Everyday is different. Somedays I actually feel what passes for good, in my world. In a non-chronically-ill-person, that would translate to something less than good. Crappy, in fact. I deal with it all as it comes, trying to make the best of the days I feel good and where I am not suffocating from pain or debilitated by symptoms.

These last two weeks have been an extended affair of miserable, but I am feeling as though I am finally bridging over the worst part and may be coming out the other side. When I am feeling my worst, I practice a lot of self-care, which for me includes: hot baths with Epsom salt, listening to mixes on Spotify, devouring Twitter and Instagram, taking a lot of pictures of my adorable cat and dog and spending a lot of cuddle time with the Mister. Unfortunately, the Mister was gone this weekend for his one-a-month Air Force gig, so I had to cuddle with the cat and dog, but we made up for it when he got home last night and plan to do more today, after his work.

In my blog, I focus a lot on issues I see in this chronically-ill-world. I also write about the discrimination I see in the disability world. I share my experiences in both those areas, as well as mental health. Some of my chronic conditions not listed above, have to do with mental health, as I am bipolar, struggle with OCD and PTSD and severe anxiety. As many people can relate, when my chronic illness is flaring, I tend to feel a spike in my mental health issues. Meaning, my anxiety ramps up, my OCD goes a little bonkers and I may get depressed or even slightly, manic. It’s all very interconnected. Today, my writing is more, catch-up. Less focusing on specific things, but rather this monster of chronic illness as a whole. It really is like a vast eco-system, and when something is off, or when something is out of control and flaring, it bounces off and affects the other things. These last two weeks, I think I might have gotten a glimpse of how our actual eco-system is feeling in the midst of all this climate change. It’s been brutal.

I had started a chat on Twitter (which you can follow me @lovekarmafood) on whether or not to take the chance with another gastroenterologist. Something else I am sure you understand, is when you know something is wrong with your body and you don’t feel the doctor is understanding or listening, but being afraid to find a new doctor and having to start from scratch again with tests and meds because, frankly, it’s exhausting. Not only is it physically exhausting having to go to the appointments, but it’s mentally and emotionally exhausting. I am pretty close to starting that search for a new doctor, especially after this week. It was probably the worst IBS flare of my life, with stomach pain that was worse than labor pain and was reminiscent of Aliens for me. But I didn’t go to the hospital. I’ve been there before for an IBS flare and it was not worth the visit. Once they know you have something chronic, they do their best to make you comfortable, but pretty much tell you to see your doctor. And in this day and age with the opioid hysteria, I’m not sure what “comfortable” would mean. Sometimes I feel that as an advocate for chronic illness/pain, and as a writer, chronicling her journey through this illness and pain, it should be easier for me to vocalize with doctors what I am feeling and what I am going through, but I’ve learned something. Doctors (not all) have a way of making you feel that they know best. Some come off as arrogant, while others come off more like a parent, but either way makes you feel like you don’t even know your own body. It’s terrible. And partly the reason for my reluctance in finding a new doctor. But I would really like to feel better, long term, with this IBS.

So that is a little about what’s been going on in my life. Stay tuned for the next time where I’ll be talking about our non-spoonie friends and their well-meaning, but irritating: “I hope you feel better soon,” followed by, “You’re not really disabled,” for my friends (like me) with disabilities.