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.

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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!

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.