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Fibromyalgia Awareness Day 2019: May 12

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.
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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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Doctors vs Google

I bet you didn’t know there was a war brewing and in some cases being actively fought between doctors and patients and Google. What is the fight over, you might ask? Let me explain because if you aren’t knee deep in chronic illness, battling symptoms that seem to crop up new every other day, and seeing more doctors than most have seen in a lifetime, you won’t understand.

The fight is three-fold. Doctors who feel that patients are looking up their symptoms and coming to them to validate a self-diagnosis. Patients who are looking to validate a self-diagnosis. And chronic patients who possibly know more about their illness than their doctors, who feel abandoned by their doctors to more and more medications because their doctor has run into a wall and no longer knows how to treat them. 

The advent of Google and innumerable medical sites that give information about thousands of diseases and illnesses, along with other sites and blogs that are dedicated to educating people about their illness have made huge differences in peoples lives. There are patients out there who have been blown off by the medical community, who could not find out what was wrong with them, who, with the information gleaned from these various sites, have been able to go to a specialist armed with this information and finally get a diagnosis and treatment. Doctors, to some extent, feel threatened. Signs like these are popping up in doctor offices everywhere. **

Google Doctor

It states that Google, and the sites it may take you to, shouldn’t be confused with a doctor’s vast knowledge built upon their education and their medical degree. Okay. I get that. I understand that getting your medical degree is hard work. I understand that there is a certain level of devotion required to the field which gives you the motivation to put in the time toward your education. However, when you possess all this vast knowledge, from degree to experience and you do not try to help a patient, let’s say by offering some kind of treatment or admitting that you’ve hit a dead end with them, and then directing them elsewhere, there’s a problem. Patients inherently want to trust doctors. What drives us to Google are doctors who shut us down, who tell us that they know best, as opposed to the person living with the disease and who simply aim to give us medication in order to “manage” the illness. Is it too much to strive for something more than being managed? Is it crazy to think that we might possibly get some semblance of our lives back? I don’t.

In no way am I trying to belittle a doctor’s work. I understand that there are people out there who try to out-smart the medical community, for perhaps their own gains. As a person living with chronic illness and pain, where much of my life is tied up to just trying to have any kind of normalcy in my life and just being able to live with as little pain as possible, the idea of someone trying to make it up is repulsive to me. The idea that someone seeking drugs would go to the hospital to fake an illness, while not surprising also repulses me and angers me. However, it helps to put the plight of doctors into some perspective for me. I don’t, however, believe that doctors should immediately condemn a patient for using Google until they’ve looked toward themselves first, for the problem.

In a lot of ways, I feel like the entire medical community is broken. This does not mean that there aren’t hospitals and doctors out there who do what is right, but with so many grievances from patients from prescription costs to doctors who’d prefer to give a terminal patient Tylenol to control their pain instead of an opioid because of this “opioid hysteria,” we have issues that seem insurmountable. A broken system where Big Pharma is reaping millions if not billions, and patients who are suffering from neglect from doctors who don’t want to admit they can’t solve a problem. I know these are huge accusations but I am not the first one to mention them and won’t be the last. I don’t have the answers either, but I am hoping someone out there will. In the meantime, Google is still my friend because educating myself on my illness means arming myself with valuable information that can help my doctor treat me. This is the only weapon I truly have in this war with chronic illness.

 

** I was sitting here drinking coffee this morning and BAM! I remembered I didn’t insert the image. That is Fibro brain for ya!

Rant

I don’t often rant, but I had a rant on Twitter yesterday. Let me explain and set up the scene for you.

Yesterday, was my monthly appointment with my pain doctor. There’s a couple of things I can expect right off the bat when I go see him. First, he will be late. Not just 15-20 minutes late, but a couple of hours late. Though I was his first appointment at 9am, he was not even in the building yet. Second, the dialogue rarely changes. What I mean by that is for the 3 years and plus or so months that I’ve been seeing him, he’s been focused on one part of my body. He hasn’t diverged from that despite my even telling him that there’s more to my pain than that specific part. I’ve also written it down for him, outline style. Third, is that while I don’t believe he is unkind and I do believe he wants to help people, he has that arrogant, fatherly, I-know-best, way about him that makes me hesitant to speak to him any more about my pain. Typically, we go through the dialogue and I get me re-fill for medicine and go on my way. Yesterday was different.

After almost an hour and forty-five minutes or so, he came into the room, sat down with his laptop and began to go through the findings on my recent MRI report. Note here: I have had one other MRI report in the entire time frame I have been seeing him, but his explanation for why I needed the MRI and why he ordered it was because he needed to be able to show he has been looking for any changes in my spine to substantiate his reasons for giving me my medicine. Okay. That is fair and I had the MRI done. The findings were not much different than it was 3 years ago in terms of what is wrong with my spine, however, there was significant atrophy in my muscles and the spaces between discs. Again, this is not surprising for me because I have been mostly sedentary. I have been doing yoga, but it’s a more sedate yoga that is for stretching and relaxation rather than building core muscles or improving back muscles. I am in a lot of pain and anything more than that isn’t well tolerated, I’ve tried.

His behaviour in both words and mannerisms after I told him I was doing some yoga was disbelief. It set my teeth to grate against each other and my 19-year-old was in the room with me and could feel the stir of my anger. He asked me next how do I feel when I don’t take my pain medicine? I truly felt like this was a trick question. One of the things you learn upon going to a pain management doctor is the absolute way in which you should take your medicine. You don’t divert from the way it is prescribed. You don’t take more and you don’t take less. I was silent while he tapped on the keys of his laptop until he turned to face me expecting an answer. I said: “I imagine I would be in much more pain than I am already, and I would probably get a lot less sleep than I already do.” He nodded and then told me next that I would need aggressive physical therapy because in his opinion, this would make me feel 10x better. Also, he doesn’t think I need the cane. According to the MRI, there is no reason I should be using it. I said very readily that my reason for using it is not only because of my pain shooting down my leg but because I have a balance issue. I teeter when I walk and when I don’t use in my house, I often hit the walls in the hallway and corners of things. He gave me no possible reason for this and just moved on.

At this point, the visit was concluded with the direction to get in touch with the physical therapy and he would see me in a month where he would see how the physical therapy going for me. I managed to escape the office without throwing a fit because believe me, I was very close to an epic meltdown. When I got into the car, I lost it. All I could think of was how in the hell is physical therapy going to suddenly help me now when it didn’t help me 3 years ago? How is this suddenly you’re a-ha moment, when I went through more investigatory injections than I have fingers, two spinal stimulator trials and a sacroiliac joint fusion? I went through 6 weeks of physical therapy, where they could not get me beyond water exercises and the spine doctor declared the sacroiliac joint fusion [SIJF] necessary and now this is the miracle cure, that will have me running, jumping and walking again?

No. I truly believe that this is his end-of-the-rope response to me. He’s exhausted all ideas, and I have noticed in previous visits that he seemed at a loss why nothing he tried worked for me. I get it. In all fairness, I understand how frustrating it would be to try and try with a patient, but keep coming around to the same result. But I also don’t feel that he’s been looking at the big picture. Instead of looking at my entire body, and the entire problem that includes all my diagnoses, he’s insisted on focusing only on the small area of my back. He’s beat this problem to death and because he can’t fix it, I am now a lost cause, and well, physical therapy can’t hurt, right? Wrong. The physical therapy I endured prior to my SIJF was excruciating. The therapist decided on water therapy because her lightest touch brought me to sobbing. While physical therapy costs money and at three times a week for 5 weeks, I know I can’t afford it, I’m positive I couldn’t endure it either. But if I come back and say I haven’t gone I am almost certain that I might have my pain medicine terminated. Talk about a rock and a hard place.

I want doctors to do something radical. I want them to look at the bigger picture and not see me as a part. Though the practice of specialities has brought more focused knowledge of a subject to patients, it’s also brought a disconnection. My rheumatologist, cardiologist, neurologist, gastroenterologist and pain management doctor don’t communicate with one another. Each of them sees me through this keyhole, only seeing a small part of what is wrong. They all prescribe their medications and here I am, still in pain and still not feeling well but managed. It’s become all about management. The management of a life in pain and I’m pretty damned tired of it.

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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.