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Thoughts & Updates from Arthritis Ashley

I haven’t updated this Arthritis Ashley blog in a while (I barely find time to post to my main website abshuck.com and haven’t posted to my entertainment blog Glitzburgh in about a year. Eek!)

However, I do want to share some thoughts and updates with all of you, my loyal readers! I’m glad that many of you are able to still follow me on Facebook, Twitter, and Instagram. Facebook’s “Live” feature has made me able to do live chats and video blogs for you all, and while I usually look like hell in a handbasket while doing them, it’s always fun to interact with fellow spoonies, rheum mates, and badass chronic illness warriors!

13260138_10153889500924232_7248118924190575015_nSo, part of why I’ve been so busy is having three books published. As you know, there’s my humorous nonfiction health memoir called Sick Idiot which is a FUNNY look at life with chronic illness — a really easy, breezy, lighthearted read. Secondly, there’s Chronically Positive — this is also a nonfiction book, basically a collection of short stories and my most popular and well-received Arthritis Ashley blog posts which offers a more real, honest, raw, and inspiring look at a life of sickness. It is a little more “self-helpy” and “inspiring” than Sick Idiot (which is full of giggles,) but it is also more gritty and transparent. My third book (actually, it is the book that I wrote first,) is called To Exist. It is a fiction novel, and the lead heroine Shelby Weiss is being hunted: she is the last woman left of childbearing age in a post-apocalyptic America. She also has a life-altering illness — but it may or may not end up being what saves her life in the end.  I’d highly recommend all 3, of course, but I’m a tad biased. I must mention, too, that I donate a portion of Sick Idiot book sales to ten different health-related charities, including, but not limited to, the Arthritis Foundation, the Lupus Foundation of America, and the National Foundation for Celiac Research. All of my books are available in paperback and e-book format. You can order from Amazon, Barnes & Noble, Half Price Books, Nook, Kindle, abshuck.com, and tons of other online and brick-and-mortar indie booksellers.

I’ve also been busy because my husband has been training for and competed in NBC’s 13533337_10206574912360524_8527284840098571804_nAmerican Ninja Warrior. (You can read all about it, here.) Not to mention, I have 3 dogs, 2 cats, and do volunteer and advocacy work for health and animal causes. I write for Healthline.com and more. (“And more” being a wide array of things, including a Teen Vogue article about Selena Gomez where I was quoted. Pretty cool.) So my plate is full.

 

Unfortunately, my health is not the best at this time.

It’s been better, but it’s also been worse. So I am grateful for that.

I’m not nearly as bad as I was in 2012 when I was in and out of the hospital with POTS symptoms, tachycardia, mysterious flushing and bowel issues, severe neck/shoulder/chest pain, and more. But I’m not nearly as good as when I went into remission from basically all my health problems the following year, for a year and a half. I did so on an integrative regimen, a mostly-natural, mostly-holistic approach, with some traditional pharmaceutical methods thrown in. It was under the care of a rheumatologist who is involved in a lot of innovative RA research and who actually practices as a translational medicine doctor. (Translational medicine is similar to  both functional medicine and integrative medicine. Google it; it’s pretty cool.)

I went downhill again around my 30th birthday or so (maybe it was my 31st? I forget how old I am sometime) when I began a chemotherapy infusion for more preventative measures than anything else. I’d listened to a speaker at a JA Conference talk about how dangerous it is to NOT be treating RA/JA even if you are symptom-free, and that it can raise risk of cancer, etc. So, I thought, why I am I risking that? And, I went back on a drug-based approach EVEN THOUGH I know my body and while I acknowledge that this approach works for most people, I know that I have some chemical sensitivities to medications and other substances, and my body doesn’t react the same to meds as everyone else. I went off of it, but it’s been hard to find another drug to replace it that I haven’t already tried, and that is approved for both RA and JA. See, technically, I was diagnosed with JIA/JRA and not RA, at age 10. My rheumatologist has never felt comfortable changing that diagnosis to “regular old” RA, despite other doctors having BOTH RA and JIA listed among my diagnoses. Since my rheumatologist is who would be prescribing these types of drugs, the “JA” diagnosis makes it very difficult to try some RA treatments that are ONLY approved for adult-onset RA. So it’s complicated. I’m thinking of going back to the translational approach, especially since right now my treatment options (with biologics and DMARDs) are limited due to that JA/RA issue as well as complications and adverse effects I’ve experienced on these traditional meds. (One of my doctors also wrote me a fatal dose of Fentanyl that, THANK GOD, my pharmacy didn’t fill, but that’s a whole other story — and maybe a sign it’s time for me to reevaluate my doctors at this point.)  I am really hopeful about new drugs coming out and new research being done and medical marijuana being legalized and stem cell therapy becoming a thing but some of those things are a ways off.

At this point, many times my migraines and dystonia are worse than my RA, but I do obviously get RA flares. For me, what is worse is the structural damage that, for the most part, can’t be reversed. You can get on a great med to control inflammation and new/current symptoms, but, you can’t undo damage, destruction, and deformity that’s already been done. That’s where a lot of my pain comes from: my bad knee, my bad foot. I may or may not need/get surgery on these areas. I’m waiting and wishing and hoping that I’ll someday be able to try  a stem cell procedure (or a few) but if that’s the case, I’m going to need a heck of a lot more of you to buy my books LOL because it is expensive! I pray that one day insurance will cover it because I’ve seen some promising results in other patients.

 

And now, I’d just like to ~vent~ for a second. This part is something that I’m sure many of you can relate to, and something that we’ve all discussed before …

Laughter-is-the-best-MedicinePEOPLE. DON’T. GET. IT. Don’t get me wrong: I’m a lot of things, but a few things I’m NOT are: bitter, melodramatic, or seeking pity.  I am none of those things. I am sensitive, but I’m not OVERLY-sensitive, or easily-offended. That said, you can only take so much ignorance and nonsense and misunderstanding before you’ve got to vent about it.

So that’s what I’m doing here.

Listen, I get it that people don’t “get it” unless they “get it.”  Y’know what I’m sayin’?

I think most people mean well with their questions and their advice; I know that most people in our lives do care about us and love us and are good at heart, even if they say things that make them sound uncaring or apathetic or just simply clueless. I cannot blame people in my life for not understanding these illnesses, because doctors and scientists and patients barely even understand them. I cannot blame people for wanting to live in denial and gloss over the reality of how truly crappy and debilitating these illnesses are. And I cannot fault people for being ignorant — because ignorance means they simply don’t know any better, not that they don’t care.

But, here’s the thing: I wish people wanted to know better. I wish people would care enough to want to sit down and do a little light reading or basic research to absorb the reality of the several-dozen diagnoses that I, and perhaps their loved ones, live with. I wish that people showed their love through not just words and hollow questions about my conditions, but just through actions and most of all, simple empathy… AND through choosing THEIR own words wisely. Sometimes, words can hurt. When you live with serious and life-altering, disabling conditions, sometimes those words hurt even more.

Truth be told — and this sounds super-mean, which isn’t me — but, truth be told, sometimes the crap that comes out of people’s mouth just makes them seem clueless. And if not clueless, then at least inconsiderate, or skeptical, or even rude.

I do realize that just because people do or say certain things, or don’t take the time to educate themselves on our conditions, does NOT by any means indicate that they don’t care, don’t love us, or aren’t concerned about us. Maybe they don’t understand the severity of what we live with – and maybe it’s because they don’t want to understand because it makes them feel too bad, or they simply can’t understand or comprehend on an intellectual/educational/intelligence level, or perhaps they just feel better thinking of us as a more perfect version of ourselves. But I don’t think the lack of knowledge or empathy always equals a lack of caring and love.

Does that make sense?

But it can still hurt … or at least, annoy.

Over the past month or so, I’ve had people who are very close to me, who I respect very think-before-you-speak-you-shouldmuch, some of whom I love very much, say things that were either 1.) hurtful, 2.) inconsiderate/insensitive, or 3.) just plain ignorant/clueless/patently untrue.

Recent examples of such:

  • Calling celiac disease “gluten sensitivity” or “gluten intolerance.”  Similar … but not the same thing. At all. I’m not a fear-mongerer or a drama queen, but although those two conditions suck, celiac disease is far more serious — let’s be clear about that.
  • Asking me what happens when I get a flare in this way: “So, what happens, do you just get really tired?”
  • Asking me if I’m running  in a half-marathon. (The individual was not joking.)
  • Saying that they don’t want to be the “old lady at the gym who can’t do XYZ.” Well … I’m 1/2 the age of this person and I’m that “old lady at the gym,” lol. I haven’t been able to do XYZ for most of my life, to no fault of my own.
  • Telling me that my Mean Horse Guy in Philadelphia Story was annoying because it seemed like I wanted attention and I just have to build up a thick skin because it’s just a dude in Philly being an asshole. “That’s how guys in Philly are!” Well, yes, he was being that. And had he been making fun of, say, my outfit, my accent, my tattoos, my hair, my purse, or basically anything else other than a physical disability that I’ve been insecure about for my whole entire life, maybe I’d have that thick skin. (I’ve dealt with a boatload of online haters, real-life bullies, and, of course, internet trolls. So I have a pretty thick skin already. A lifetime of difficult illnesses, in particular, will make you really, really tough.) But, in my mind, you NEVER make fun of someone’s illness or disability or physical traits. (And I can also attest to the fact that not everyone from Philly is an a-hole.)
  • Telling me I can cure myself. Mmmkay. Treat? Maybe. Cure? No. We all know I believe in a positive attitude, mind over matter, a healthful diet, an integrative/combo approach of both traditional pharmaceutical drugs and a holistic/natural methodology, and an overall healthful lifestyle of wellness. We all know I believe in the power of prayer, meditation, even the law of attraction. I like reiki, I like energy healing, I’ve been to a psychic medium. Heck, I’m on the waiting list for the Medical Medium. And I own gemstones and mala beads and some other crazy, hippie, pseudoscience new-agey craziness. I’ll try anything from grounding/earthing to healing crystals to pain management meditation, praying to healing saints, and beyond. But, do I think I can magically cure myself? That’s semi-ridiculous. (Although, I recently told friends during a discussion about what superpowers we’d have if we were superheroes, that mine WOULD actually be to be able to heal myself, and others!)

Okay, most of these are not a big deal, I should clarify that fact. But, it’s the *accumulation* of all of them that bugs me. It’s not ANYTHING against any of these individuals. I’m not mad at them, I don’t have any hard feelings towards any of them, I’m not bitter or holding any comments against anyone, and these remarks for the most part just go in one ear and out the other. Again, it’s really not a big deal BUT what IS a big deal is that as a whole, as a society, this stuff hasn’t improved.

WHY does society understand how serious some diseases are, but not others?

WHY do people think that rheumatoid arthritis is just achy joints and bones like osteoarthritis is? Why don’t people know that there is a difference? Why do people think that migraines are just headaches? Why do people think that celiac means I get a little bellyache or some bloating after I eat gluten? And don’t get me started about things like POTS or dystonia or sjogrens or Chiari. No one knows what those things are, and people also seem to think that RA and Lupus and Fibromyalgia are all the same thing and are all psychosomatic and a product of laziness or negative thinking and I just can’t.

Here’s the real picture, which isn’t as pretty:  RA (rheumatoid arthritis) is a systemic disease that attacks various parts of the whole body. This can include the heart and lungs in some cases. Sometimes you can visibly see the joint deformity and damage, sometimes you cannot. It is severely disabling and extremely painful. It is second only to cancer in terms of expense of treatments. Arthritis is the leading cause for disability in the nation and possibly the world. People can die from it or at least from complications from it and its treatments. If you have “bad knees” or arthritis from old age or a sports injury, you do not have the same condition as me.

Migraines are also a systemic disease in many cases. Those with chronic migraine face the potential of actual physiological changes/damage in the brain. It is a neurological disorder, not just a bad headache. Those of us with chronic migraine face 15+ more of these monsters per month, which sometimes leave us completely debilitated or hospitalized. Migraines are also a leading cause of disability AND the World Health Organization lists it as the 7th most disabling condition of ALL DISEASES IN THE WORLD. LITERALLY. It Migraine is always in the top 20 most debilitating conditions in the world, as listed by the WHO and other health organizations. “Researchers ranked severity of disability in seven levels. Diseases that exemplify the highest level include active psychosis, severe depression, severe migraine, quadriplegia, terminal stage cancer,” according to Migraine.com.

So, there’s that.

And don’t get me started on Celiac disease. It can cause cancer, it can cause malnutrition, and it isn’t just a tummy ache.

But for some reason, awareness still is lacking when it comes to these relatively-invisible illnesses. Take POTS for example: I was hospitalized with this several times in 2013 and still had a few people in my life talking to me about my “anxiety.” Sure, I got anxiety from constantly being taken by ambulance to the ER and being admitted a bunch of times, because, let’s face it: who wouldn’t? But, no, anxiety wasn’t the cause of my physical medical problems.

Then, there’s Bravo TV. Now, bravo to Bravo for featuring storylines relating to people’s health issues. I honestly dig it. But, what bums me out is the way that these cast members’ friends react to their illnesses. Take the Real Housewives of Beverly Hills’ women questioning Yolanda Foster‘s Lyme Disease diagnosis (and severity of said diagnosis) mostly because some days she looked “happy and healthy” on Instagram, and they next day she looked “sick and miserable,” … and then there’s the cast of the current season of the Shahs of Sunset not believing “GG” Golnesa’s RA diagnosis, and accusing her of exaggerating. Why do these people not believe their friends? Because they can’t see it and they don’t get it. They simply don’t understand because chronic illnesses aren’t sexy and they aren’t always terminal and they don’t get coverage by the mainstream media. They don’t understand because they don’t take the time to educate themselves.

The same thing happened when Selena Gomez came out to the press about her lupus diagnosis. Rumors swirled that she wasn’t really ill, that she was in rehab for drugs — when really, she was getting infusion treatment for her lupus.

All of the mistrust and skepticism surrounding chronic illness and invisible disabilities has got to change. No, we aren’t all lazy. No, we aren’t faking. Most of us want to live full, fulfilling, fit, active, productive lives. All of us want to be healthy and we innately feel that as humans we have a right to be healthy — but that isn’t true. Our health was never promised or guaranteed. So we have to treasure it while we have it and be stewards of our health to protect it, doing the best we can to preserve what health we do have.

Those with good health should be grateful. It pains me to see people who are blessed with gratitudegood health ruining it or letting it go to waste. It hurts me to see people who are lucky enough to be healthy and to lead a life without sickness to take that for granted. And it really, really bugs me when people act like the world is ending because of something silly — and these are often the same people who haven’t really ever faced true adversity or true struggle, complaining about first-world problems that are a part of everyday life for most people, who are blind to their blessings because they are so wrapped up in their own lives that they are unable to look at things from a broader perspective to see how wonderfully lucky they really are.

… And now that I’ve rambled enough to make up for the entire year or so that I *didn’t* post on this blog, lol, I will let you go enjoy your summer day (well, summer depending on where you live.) 

I hope that this blog post piqued your interest or made you think a bit. Maybe you could empathize and relate, maybe  you couldn’t empathize but you can sympathize. Maybe you took something from it, learned something new, or will now be more compassionate to those fighting the same battle as me and millions of others. And even if not — thank you anyway for reading.

Please check out my books and my work on Healthline!

 

 

10515148_927275813955712_2011620265661799784_oBe well,

-Ashley 

 

 

3 thoughts on “Thoughts & Updates from Arthritis Ashley

  1. Thanks for the empathy. OA is absolutely NOT just achy bones and joints. Do some research and talk to those of us with OA. We suffer just as much and sometimes more. You ask for empathy for your conditions, but downplay another form of arthritis–“just OA”. Oh, and the “evils” of opiates. If it weren’t for opiates, I wouldn’t have the limited function I do and, let’s not forget, a modicum of quality of life.

    Please think about what you say when you minimalise the pain and disability that can, and does, come with OA. We hurt too…

    • TJ, Thanks for sharing. You are absolutely correct in that I shouldn’t have phrased it that way. For the record, I have OA and have since my mid-20s. I have it pretty severely in some parts of my body. I only said it the way I did to distinguish the two illnesses. What I meant was that RA is systemic and can affect organs and tissues other than the joints. OA is more limited to joints and bones. I didn’t mean to imply that it hurt less or was any less painful. Arthritis in general is a blanket term that encompasses about 100 different conditions. Often, people confuse RA and OA. I shouldn’t ever say “just” OA but in my case, I mean to say that I have RA not “only” OA. Does that help clarify where I was coming from? Arthritis is the leading cause for disability in the nation, and no form if it is to be taken lightly. I apolgoize for the way I worded it; it wasn’t the best choice of phrasing on my part. Again, as someone who lives with multiple forms of arthritis, I do not mean to diminish any of them. I also should note that I speak for myself personally and not all patients. I’ve had RA since I was 10 and overall it’s been more disabling and destructive to my life but as I get older (I’m now 32,) I can tell that the OA is causing me just as much pain. I only meant to say that the general public often confuses the two and that RA is not just aches and pains, nor is it the same thing as OA, nor do I “only” have RA. Sorry it came out wrong. Trust me, I empathize with you very much and literally feel your pain! Be well. – A

    • PS: as a side-note. I never said anything about the “evils” of opiates. It is widely-known and widely-studied that overuse of opioids can actually INCREASE pain in chronic pain patients. Also, MY personal experience is only MY OWN. I cannot speak for other patients but I can say that it is very well-documented within the medical community that opiates are not always the best choice for chronic pain. I am glad that for you, they help. But they caused hyperalgesia for me, and, I have seen people become addicted and/or overdose, so please excuse my bias. Remember that I am speaking only from my personal experience and opinion, not as a medical expert or the patient population as a whole. I don’t think I called opioids evil. We are all entitled to our opinion on which treatments work best for us. I don’t judge others for what they do — they’re
      just not for me.

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