Advocating for Your Chronic Pain Illness

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Last Thursday, I was not in a good place. I felt utterly mortified, wavering between defeat and anger. I knew that I needed to find another primary care provider, but the way my APRN said “If you see another doctor or get another prescription, I’ll get another letter and I won’t prescribe the Tramadol anymore” made me feel like if I transferred to another practice, I’d still just end up looking bad. I hadn’t actually done anything wrong, but I felt like I had, and I felt like I didn’t have any other choice.

Her words kept replaying in my head: “I’ll get another letter,” as if she was trying to threaten me. Had she really been concerned about my being dependent on painkillers, she would have asked me questions about my use, trying to get to the bottom of her concerns and helping her patient. But healthcare practitioners are not trained in substance abuse, save for a small segment. Nor are they trained in pain management. So, when faced with chronic pain patients like me or patients who are struggling with substance abuse, they don’t know what to do with us. And when they’re prejudiced by ageism, sexism, and ableism like my APRN—who made up her mind about me the very moment she saw my youthful, feminine face—they can’t be bothered at all.

And hey, maybe she really does mean well, but I have a hard time believing it when she consistently dismisses all of my concerns during our appointments, yet is attentive, involved, and jumps into action whenever she sees my husband. I’ve sat in on his appointments. I’ve seen the differences in treatment with my own eyes. The other day, while checking out, the elderly woman behind me praised the same APRN who’d just all but flat out accused me of lying. At this point, I can only conclude that she treats me the way she does because of how I look: like an able-bodied teen girl.

So yes, I call it like I see it: ageism, sexism, and ableism. And I’m so sick of it, I could breathe fire.

When my rheumatologist told me, during our first appointment, that I can’t possibly have an autoimmune disease and that I should be grateful it’s “only” Fibromyalgia, I was hurt and furious. I walked out of the office barely holding back tears, and spent the morning intermittently crying and smoking cigarettes. Then, the next morning with my best friend by my side, I called the office to complain. I ended up having a very productive phone conversation with him, and truly felt that he wasn’t bullshitting me. He’d realized he’d been wrong to judge me so quickly, and was willing to help me get my autoimmune disease figured out and under control.

I didn’t feel as if I could have such a productive conversation with my APRN. She has been dismissive of me since my first appointment with her, and even when I repeat my questions or point out facts, she completely ignores me. Whereas, with my rheumatologist, even when he disagreed that I have an autoimmune disease, he was still willing to listen, to take the time to answer my questions. I’ve never gotten that impression from my APRN.

Besides, I needed to state facts and lay things out, which would take longer than a five-minute conversation with the front end staff. They’re very busy, and likely wouldn’t have time to sit on the phone with me while I rattle off dates and details, nor could I be sure that the message would be relayed properly. I also felt super anxious, and wasn’t sure that I could speak without getting upset all over again.

I felt stuck. Even if I transferred to another doctor in the same health network, I would just look like the drug shopping liar she accused me of being. I wasn’t sure that the next doctor would be willing to refill my prescription and, even though at this point the Plaquenil is starting to work, I do still need pain relief. For my own peace of mind, I also need to know that, should the pain get bad again, I can get the medicine I need in order to get through my days and nights.

“I’ll get another letter,” she’d told me. While venting to Sandy, it dawned on me: she would get another letter, because I was going to send one to her.

Even though I wrote it in the security of my own home, I felt my anxiety mounting with each word. As patients, we’re conditioned to go with whatever the doctor tells us because they have the medical degree, not us. As chronic pain patients, we’re even more inclined to roll with it because we’re grateful to be treated at all—especially women, who are often stigmatized as being dramatic or drug-seeking. Autoimmune diseases are documented as being difficult to diagnose and treat; what works for one patient often won’t work for another with the exact same condition, because every person’s immune system is different. When you’re fighting an autoimmune disease, you’re fighting your own body, a complex and adaptive machine that scientists and doctors still don’t completely understand. So, when you’re not even very familiar with your own disease, it’s absolutely daunting to stand up to a healthcare practitioner and say “You’re wrong”—even when they are very clearly wrong, as my APRN was.

In my three-page letter, I stated dates that I’d been seen along with the unprofessional things that she’s said to me. I explained that I had come to her first, that because she’d brushed me off, I’d had no choice but to go to the ER when it hadn’t improved a week later. I ended my letter invoking my right as a patient to see the office MD from here on out.

After I put my letter in the mailbox, my anxiety only increased and I kept questioning myself, telling myself that I’d made a mistake, that I should just rip it up and deal with things the way they were. I always feel bad for standing up for myself. Maybe, if I’d just outright said to her “It’s not okay for you to joke about my age and condition” from the very beginning, or “I would like to try Flexeril” when she brushed off my Advil questions, it wouldn’t have come to me laying it all out in a three-page letter.

Women are conditioned to believe that if we speak up for ourselves, we’re inconveniencing someone. We’re accused of complaining, of being a bitch. But I had to advocate for myself and my healthcare, because if I don’t, no one else will.

So, I mailed out my letter. Despite my damned phone anxiety, I plan on calling in a few days to follow up and make sure that they got it. Then I’ll make sure my next appointment is with the MD who replaced my retired doctor, and hopefully s/he will be much more attentive, compassionate, and knowledgeable. I’ve seen dozens of doctors over the last decade, and so few of them are. It’s a damned shame, because it impedes healthcare and also ruins patients’ faith in doctors. I know it sure as hell has killed mine.

I’m getting better at advocating for myself, though. Even if I’m too shocked to defend myself in person, I can always call later when my anxiety calms, or write a letter when my anger fades. Speaking of, I also wrote a letter of complaint to the hospital about the way the ER attending and some of the staff treated me. In the past year, since getting my voice back, I’ve become less afraid to speak up for myself and others. It’s never easy, but it’s always worth it.

I am worth it.

Hello, 2017

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If you’ve been around for any period of time, you know I’m all about goals rather than resolutions. Setting actionable, achievable, and accountable goals is far more productive than making promises.

Usually, I keep my goals for the year down to a short list. Recently I heard about Level 10 Life, which is basically just your life, broken down into 10 areas. You’re supposed to set 10 goals for each area—100 in total—with the objective of eventually fulfilling all areas of your life. I don’t know about you, but I don’t think it’s possible to ever reach 100% fulfillment; there’s no such thing as perfection. Plus, I think 100 goals is a bit overwhelming.

Goals are supposed to be challenging yet within reach. If you set the bar too high, you’ll set yourself up for failure.

A few weeks ago, I found a wheel of life pin that I loved. It focused on eight areas of life rather than 10, with one goal in each area. The objective is to achieve more balance in your life; once you reach a certain goal, you set a new one in that area.

I tried making the wheel of life and failed epically. After several attempts, I realized I didn’t need a Pinterest-worthy craft to help me set goals for 2017. I sat down with my white board and several dry erase markers, and got busy. This list is the result.

My Goals for 2017

Home

Get curtains for all windows. Though it has its quirks, I love our little country apartment, and hope to stay here until we’re ready to start a family. (That’s a whole other blog post, so stay tuned.) To make our place look even more home-y, I’d like to get curtains for each window. Fortunately—in this case, anyway—there aren’t many windows; our apartment was an attic in a former life. I’m starting with the kitchen, with the front door (which naturally has the oddest measurements ever, and I can’t seem to find anything). Challenge accepted!

Me

Get arrow, hummingbird, and spade tattoos. 2013 was the year I got married, and probably one of the best years of my life. But 2014 and 2015 were easily two of the worst years of my life. I lost one of my best friends in 2014 and in 2015, I lost myself. PTSD finally caught up with me and I completely bottomed out. But in 2016, I got better.

There’s a quote that really spoke to me in 2015-2016:

An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it’s going to launch you into something great.

I don’t know where it originated, but it really resonated with me—especially regarding my PTSD. I truly cannot explain how strong I feel. I’ve got my voice and my magic back, and I feel more me than I’ve ever felt. This is why I want to get an arrow on my ribs, on my right side—to remind me of how I shot forward in 2016. Something simple and delicate (my ribs do swell, after all, so tattooing that area might be a bit… challenging). Something like this, in this same spot:

I think this design is the one I’ll go with.

I’ve long wanted to get twin hummingbirds on my collarbones, for my Popi. He loved watching the birds at the lake, and the “hummers” were his favorites—especially the ruby throated hummingbird. Growing up, I always felt enveloped by magic whenever I could look fast enough to see them. Popi had hawk eyes and saw everything; he was the magic.

I like the general placement of the hummingbirds in the above pin, but I don’t love the design. My plan is to have Jay—the artist who did my hydrangeas and tiger lilies—design and tattoo my hummingbirds. I love his style and I know he’ll help me come up with something I love.

Finally, I want to get a spade in memory of one of my best friends, Sean. He loved spades—I’m pretty sure it was an old nickname, though I have to check with his girlfriend to make 100% sure—and had one tattooed on his forearm. I’ve been racking my brain, trying to figure out the perfect tattoo to remember him by. It suddenly dawned on me the other day that I should get a spade. I’ll probably add it to the sleeve I’m working on, on my left arm.

I’d like to get something for my Biz Noni, too, but for one, I’ll be lucky if I can afford three tattoos in one year. Plus, I kind of already got something for her: my hydrangeas around my Fievel. She was still alive back then, but my dad was talking about transplanting her hydrangeas in the yard. I thought about how amazing it was, that those hydrangeas stubbornly continued to bloom year after year after year—even though she couldn’t physically get outside to nurture them anymore. It reminded me of her; she was “up there” in age, but remembered everything and had survived much. I got the hydrangeas tattooed as a reminder that I can survive, too, even in the toughest of circumstances.

Money

Pay off all debt and past due bills. I won’t bore you with the details, but between my student loan, some credit cards that I opened to help us out, our bills, and my creative team from Booktrope, I’ve racked up a teensy bit of debt. I say “teensy” because I was panicking but when I added it all up, I realized it’s really not that bad. Some people are thousands of dollars in debt; I’m only about $5K in. Still, I’d really like to make it go away—especially the damned student loan that’s been hanging over my head for years.

Long story short, that student loan is from a half semester that I had to withdraw from due to health issues. It was too late to withdraw without penalty, so I got stuck with the bill. I’ve been trying to pay that thing off for almost 10 years now.

My accumulated debt grew to a ginormous monster in my head. I’d wake up in the middle of the night, heart pounding, terrified I’d go to jail for delinquency. That’s totally not the case, but anxiety lies. When I actually broke it down on paper, though, it suddenly became a teeny baby monster. Now that I’m writing for Textbroker and regaining momentum in my career, it doesn’t seem completely impossible to overcome, either.

They say the best way to pay off debt is to make regular payments on everything while going really hard at one particular bill. I haven’t quite decided which one to tackle first, though.

Career

Finish all currently open series. 2016 was all about regaining some lost momentum; 2017 is going to be all about closing boxes.

Right now, I have three unfinished series: the Comes in Threes, Not Just Any Love, and South of Forever series. While the Not Just Any Love series is actually just two companion standalones (Just One More Minute and the forthcoming Char/Amarie novel), the Comes in Threes series has been in limbo for almost four years.

I’ll be releasing the final South of Forever book soon, and then my plan is to get back to Quinn, Tara, and everyone else from Crazy Comes in Threes. I’ll be rewriting CCIT; I won’t be changing anything about the story, but I’ll be making some structural changes—that way I can pull off my master scheme. I’m super excited about what I have in store. More news on that soon!

Marriage

Go on one date every month. Thanks to the holidays, health issues, and financial stress, Mike and I haven’t been able to spend much time together lately. Our hot dates have recently consisted of doctors’ appointments and him helping me put pants on. So romantic. 🙄 Not!

Money is beyond tight, but I’d really like to do something every month—even if it’s just a movie night in. We’re both always busy, but I make sure we eat dinner together (unless he’s working), with no tech at the table so we’re really focusing on each other. Still, I’d like to do actual dates.

Last month, my Noni got us a gift certificate to our favorite sushi place, so we went to lunch after my rheumatology appointment. (Note to self: blog about that ASAP.) It was nice to get out and spend time together, and we have enough left on the gift certificate to do it again. Little things like that keep our relationship strong.

Family

Host at least one family dinner. Due to my arthritis, it’s really hard for me to pull off gatherings at our place. Not only is it physically difficult, but it also takes a major toll on my energy. The last time we hosted anything was Mike’s birthday party—in October. It was so nice to have both sides of our family all together, but I paid for it dearly in the days after. I always do.

Originally, we really wanted to host weekly Sunday dinners, but that’s just not possible. I’m slowly adjusting to my limitations, which means not pushing myself and accepting things for what they are. Still, I’d like to have at least one Sunday dinner this year; they were a huge part of Mike’s family when he was growing up, and it’s really important to him that the tradition continues.

My plan is to give Plaquenil and Prednisone some more time and, when the weather gets warmer, set a date.

Health

Find a treatment that brings pain down to a 4/10. I’m hoping Plaquenil is The One. I’ve accepted that I’ll probably never have a zero pain level again, but if my new normal could be a 4/10, that would be great. At that level, the pain is tolerable; once it gets to five or even six, it’s debilitating. Honestly, I’ll even take a five at this point; last Sunday, it got all the way down to a five, and I felt amazing. It’s been an eight lately, which is still better than a nine or 10.

But four is about my normal level when I’m not in a flareup. If Plaquenil can decrease the flareups and their severity, I’ll be happy.

I’d also really like a diagnosis more definitive than “it might be Lupus” or “it’s definitely enthesitis-related arthritis.” Right now, my chart has Undifferentiated Connective Tissue Disease (UCTD) as my diagnosis, which translates to “undiagnosed autoimmune disease.” It means there’s definitely something inflammatory and autoimmune going on, but my labs are inconclusive. There are two camps in rheumatology: one that relies more on symptoms to diagnose, and the other that relies more on labs. My rheumatologist falls into the latter, and so did my former rheumatologist. There’s nothing wrong with that, but for my own closure, I’d really like to know the name of the disease that has completely and irrevocably changed my life.

I may never get that. I may have to practice accepting that. Time will tell.

Passion

Write “writing through trauma” book as a blog series. I’d like to tell my story—and help others write through theirs. Writing has long been a huge part of my life. I’ve written my way through every major event, be it in a journal or weaving my pain into a novel. The most important writing I’ve ever done, though, were my trauma stories.

I’d like to teach others how to write through their pain. Eventually, I’d even like to lead workshops for local organizations who help sexual assault survivors, but I’ve got to start small. That, for me, means writing a how to book.

I’ve started several times. I keep getting stuck because I’m not sure how much of my personal story I should share; I don’t want to take away from the advice I’m giving, but I’d also like to show how writing through my own trauma helped me. I’ve decided to take my outline and the roughly 10K words I’ve written, and turn it into a blog series that can be later converted into a book. This way, I can get some reader feedback on it while I’m putting it together.

Stay tuned, because that will be starting very soon.


What are your goals for 2017? Let me know in the comments!

Until Further Notice

via Unsplash
via Unsplash

My dear readers,

I’m going to be say this flat out: I need a break. I’m dealing with a nasty flareup of my autoimmune disease, which means every single one of my joints is in agonizing pain and stiffness and I’m beyond exhausted. Every day I fall farther and farther behind on my work load. I’ve been struggling to catch up on bills with freelance work and a GoFundMe. It’s almost December, which means I’m supposed to start my yearly inventory soon (updating covers, interior formatting, pricing, etc). The holidays are officially here, so my personal life is naturally more hectic. And pretty soon I’ll be starting pain management, which occupies a lot of time during the first month or so; hopefully I’ll also be starting Plaquenil or some other kind of DMARD.

Every aspect of my life is completely off track—including my marriage, due to my declining health and the resulting financial stress we’re under—and I desperately need to play catchup.

I feel like I’m spinning my wheels, and I feel tremendously overwhelmed. Not only am I too stiff to get right out of bed every morning, but I also immediately feel panicked because there is so much I need to get done in a given day and my body just won’t cooperate. Even simple things like doing dishes have become a serious challenge. It’s not a good feeling.

love social media. I love blogging and I love sending newsletters and I love tweeting and I love doing Facebook takeovers. Most importantly, I love chatting with you. But if I’m ever going to catch up on my work and get my personal life in order, something is going to have to go.

So I’m going to go dark for a while.

I really hope this doesn’t hurt your feelings. But I’ll be using my time away to:

  • finish up some projects
  • update covers and pricing
  • rearrange my catalog
  • get my health in order
  • reconnect with my dear husband
  • spend time with my family

You won’t be completely cut off from me. I’ll be scheduling social media posts in Hoot Suite; I just won’t be able to respond individually or check DMs and messages. I’ll be releasing a special holiday novella starring Rowan and Matt from Just One More Minute. I’ll be checking my email every Monday; you can write to me at elizabethbaronebooks@gmail.com. And I’ll be sending out a holiday newsletter sometime in December with all my current happenings. (I may also be occasionally blogging, but nowhere near as much as I’ve been.) You might see some titles go unavailable on Amazon, etc for short periods of time while I’m updating, but please don’t worry. I’m just doing inventory to prepare for a rocking 2017.

And just to throw this out there, I’m not getting divorced or anything like that. Mike and I have just both been really stressed and I think we need to spend more time together to reconnect. We’re just as sickeningly in love as ever, if not very frazzled and overwhelmed.

I know I keep using that word but trust me, it doesn’t even begin to describe the state of Liz Land right now.

In the end, this will be the best thing for everyone. You’ll get things you’ve been long waiting for—like the rest of the Comes in Threes series—and I’ll (hopefully) get a diagnosis and start treatment. Not that my health hinges on the time I spend on social media; I just need to rearrange my priorities so I can focus on the most important things.

I hope this makes sense and I hope you understand.

I love you dearly, and I’ll see you in the new year!

Elizabeth Barone

Review: Give Yourself the “Guts” to Fight (+ Giveaway!)

Schwartz Bioresearch Probiotic
Schwartz Bioresearch Probiotic

Those of you who have been with me for the past 10 years know I’ve been fighting a pesky autoimmune disease that is maybe Lupus. One of my main symptoms is debilitating joint pain, which I combat with a wide toolbox. My greatest ally has been the painkiller Tramadol, which knocks 10/10 pain down to a more bearable 7 or 8. The only downside to taking an opioid like Tramadol is that it can mess with your GI system.

One of my other main concerns about my autoimmune disease is my immune system itself. Since my immune system is confused and attacking my body, it gets even more confused when I come down with something like the common cold. Most people don’t even miss work when they’re sick, but I get knocked on my ass for several days and it almost always leads to a flareup of my autoimmune disease. This means lots of joint pain on top of an already annoying cold, so I try really hard not to get sick in the first place.

I’ve wanted to try a probiotic for a while now, but honestly the ones I’ve seen in stores are expensive. We’re talking like $15 to $20, which is way out of budget when you’re already struggling. I’d basically given up on trying one, until Schwartz Bioresearch contacted me and asked if I’d like to review one of their supplements and host a giveaway. Um, yes please!

Lucky for me, they offer a probiotic. They sent me a free bottle in exchange for my honest review. I don’t get paid for this review, but I do have some goodies for you!

The package itself came fast. Maybe it was expedited since I’m a reviewer, but it arrived three business days after I agreed to participate. I also really liked the packaging itself. The box was super easy to open; I didn’t have to fight with any glue like you do with most things on the market these days. My hands and wrists really appreciated that. However, the plastic around the cap was a pain to get open. It wasn’t perforated like most OTC medicine bottles are, and I don’t have the strength to rip it myself. So I gave up and used scissors. Still, no big deal! The peel-off protective thingy underneath the cap came off super easily.

Speaking of packaging, they were also kind enough to print a coupon for my next order right on the bottle. I thought that was really cool because I’m a busy author and I can easily lose a paper coupon in my various piles of papers, but there’s no way I can lose a whole bottle.

Being a spoonie, I take a lot of pills. Anyone who knows me knows that I hate taking pills. Any time I have to add another one to my pillbox, part of me dies inside. But these capsules go down easy with just a sip of water, and they play nice with my other medication. (Have you ever had a lump of meds get stuck in your throat? It’s not a fun thing.)

From what I understand, it can take a few weeks to get the full effect of probiotics. I take mine twice a day, as recommended on the bottle, and I’ve been taking them for over two weeks now. When I first started them—and sorry if this is TMI—I was not at all regular, thanks to my Tramadol. I try to eat a balanced diet with lots of fiber, but that’s not always enough. I really do think the probiotic supplement has made a difference; I’m still not as regular as I’d like to be, but I no longer have awful stomach pains, and I now “go” much more frequently than before. I consider that a win.

I also think they had something to do with keeping me germ-free while Mike died for weeks with a super cold. The poor guy never gets sick, but this thing knocked him on his ass. He missed like five days of work, which if you know him is unbelievable. And it was a mean cold, complete with stomach bug -esque symptoms and bronchitis. I never got sick, though. Now, I’m sure that washing our hands and not kissing had a lot to do with with that, but I also sleep next to the guy and I have a crap immune system. I once got the flu twice in a row, and I’m autoimmune. He’s finally feeling better, and I never caught it. Another win!

The bottle I received is a month’s supply, so I’ll know even better when the month is over whether it’s made a difference for me. The retail price is $18.90*, so it’s comparable to similar products in stores. Plus there’s that coupon. 😉

Even better, Schwartz Bioresearch offered a $100 Amazon gift card giveaway to my readers! Who can’t use a $100 Amazon gift card? I know I can think of a few things I’d like! All you have to do is enter your email address below (they’ll also send you a free smoothie recipe book).

Giveaway November 2016

So there you have it—my first time using a probiotic. I think I’ve finally got the “guts” to fight like the spoonie warrior I am!

Save 10% off on all Schwartz Bioresearch products! Use code 10SAVE17 on their website, http://schwartzbioresearch.com. My contact has assured me this code will not expire and can be used again and again, so start shopping now!

Have you ever tried a probiotic? What did you think of it? Let me know in the comments!


Disclaimer: This post is sponsored by Schwartz Bioresearch. I received a free bottle of their probiotic supplement in exchange for my honest review. My opinion is my own.


ED, 11/21/2016: My original post linked to the wrong product; the product I received to review was the 40 Billion CFU probiotic, not the 20 Billion. I’ve updated the link and retail price. Also, Schwarzt Bioresearch’s social media manager read my post and very kindly sent me their turmeric and curcumin blend for my joint pain! I’ll be reviewing that product soon.

You Don’t Know Exhausted Until

you-dont-know-%22exhausted%22I never followed up on my last health update (the one where I found out I was once again looking at a Lupus diagnosis). Since that post, I’ve gone into a full-throttle, super nasty flareup.

  • My pain has been steadily at 10/10 (8/10 at the lowest, with medication). I thought I had it under control after breaking up my Tramadol dose. Usually I take 100mg at bedtime, but I started taking 50mg in the morning and another 50mg at lunch instead, using my herbal medicine before bed to get me through the night. I got the idea to split my Tramadol from a friend, whose pain management doctor told her that Tramadol isn’t great for treating pain; you have to take it ahead of the pain—which I’ve long suspected. The downside to all of this Tramadol? TMI alert: I’ve been a little constipated, which I’m pretty sure is making my back pain worse.
  • Joint pain is symmetric, meaning both sides hurt. So both of my thumbs are painful and stiff, both knees, both elbows, etc. Oddly, my right side hurts more than the left in some cases; my right big toe, right hip, and right thumb have consistently been more swollen and painful than the left side. I suspect these joints all have bone spurs (Dr. Memet said she thought my toe did [both in the toe joint itself and the other nearby joints]—, my hip x-rays showed bone spurs, and my thumb feels exactly the same as the other joints do).
  • The pain is a hot ache and it radiates. But it also feels… bruised? There’s almost a throbbing, too; I can feel my joints swelling. It’s really hard to explain. Regardless, it feels fucking horrible.
  • My lower back is equally painful on each side, and very stiff. This morning Mike had to help me get dressed and put my slippers on. He had to help me sit and stand up multiple times. And every time I need to get something from one of our cabinets, he’s had to do it for me (our cabinets are underneath our counter—no overhead ones).
  • The pain wakes me up at night, multiple times. There have been a few nights where I couldn’t get comfortable and so didn’t sleep at all.
  • On top of the pain, I’m drained—no matter how much sleep I get. I’m not usually a napper, but I’ve been caving and taking naps. I’ve also been chugging Emergen-C like it’s my job. Neither that or coffee really help, though, so I’ve mostly been drinking plain water.
  • The only place I’m truly comfortable is on the couch. It curves nicely against my back and reclines, so I can get the pressure off my hips and knees too.
  • I need my cane while out and about—if I’m even up to leaving. I stayed home instead of going to a wedding reception this weekend. Today I basically haven’t moved from the couch, because walking and standing are sucky.

Since my last post, I found out that my anti-dsDNA was positive and pretty freakin’ high. A positive anti-dsDNA means:

  • there’s definitely something autoimmune going on
  • there’s a pretty good chance it’s Lupus
  • the immune system is attacking the DNA
  • the person is currently or about to be in a flareup
  • the higher the levels, the worse the flareup

My rheumatologist’s lab measures anything over a 10 as positive; my anti-dsDNA measured a 24. That’s more than double the normal level.

My rheumatologist said he doesn’t want to diagnose without a positive ANA, but I’ve found several medical journal articles that said doctors don’t need more than a positive anti-dsDNA to diagnose Lupus—especially with presenting symptoms. My rheumatologist said he was calling in Plaquenil, though—or so I thought. When I went to pick it up at my pharmacy, it wasn’t in. I checked the pharmacy several times, and they even checked other locations. No dice.

Honestly I’ve been so exhausted, not to mention tired of the medical merry-go-round, I haven’t called my rheumatologist’s office yet to see what happened with the ‘script. I was on the phone multiple times with them before and after my blood work came back, trying to resolve my bad appointment. I’m just sick of having to do all of this.

I have, however, been reading up on the anti-dsDNA, Lupus, and some other things.

  1. What Arthritis Pain Feels Like—It’s possible that I have both OA and RA (or Lupus). Dr. M told me I have bone spurs in multiple joints. However, some articles indicate that bone spurs can be caused by RA/autoimmune. It really depends on the author, as rheumatologists all have different opinions. Either way, this article describes my pain to a T.
  2. New Findings with Eppstein Barr Virus—I know one thing for sure: this all started after I had mono, which is caused by EBV. I thought this article was interesting, because even though it didn’t mention Lupus, it did mention some findings. For example, researchers believe that a healthy zinc level may keep chronic active EBV disease at bay. I’m wondering if my EBV is slowly evolving into Lupus. If so, could taking some of these supplements help keep flareups away? Or maybe it’s CAEBV? Chronic Fatigue Syndrome? Rheumatoid Arthritis? Lupus? Some combination of multiple or all of these? Can someone please get me some answers before I lose my mind? 😜
  3. Characterization and Treatment of CAEBV Disease—This article made me want to check my EBV levels; if nothing else, it’d be interesting to compare where they are during a flareup to their levels during remission.
  4. Understanding Lab Tests and Results for Lupus—This was the article that suggested rheumatologists only need positive anti-dsDNA and presenting symptoms to make a Lupus diagnosis and begin treatment.

    Anti-DsDNA is more specific to lupus than ANA and can be very valuable in making a diagnosis of lupus. […] If the anti-DsDNA levels are high, the disease is more likely to be active. There is either a current flare or a flare may be imminent.

  5. I’ve long been complaining about Connecticut healthcare. Recently I found another spoonie living in CT who, after years of getting nowhere, went to see a rheumatologist in Boston. Within a single office visit, he diagnosed her and began treatment. I’m starting to think it’s time to get an out-of-state opinion.
  6. She also has a post all about filing for disability, which really gave me hope because I thought after being rejected that there was no way I could get it. I know many people get rejected the first time and have to try again, try again, but I thought since I lost my diagnosis, I definitely didn’t have a chance. But it seems like, as long as you can prove your illness is affecting your ability to work—which it is—you can get disability.

I know I should’ve called both my primary and rheumatologist days ago, because even if they don’t feel like doing anything about it, at least this will be documented. It’s nearly time for a followup visit with my rheumatologist anyway, and I’m scheduled for a followup with my primary for November 17th. (Long story short: My primary wants me to come in every month in order to have my Tramadol refilled.) And my rheumatologist wanted to check my levels again in another month.

I’m out of ink (and can’t afford more right now, sigh); I’d really like to print off these articles as well as a list—my current symptoms, things I’ve tried, goals that I have, etc—and bring them in with me. I’ve started looking for rheumatologists in Boston who take my insurance (spoiler: there aren’t many), and I’m considering picking one and calling to make an appointment. But it’s a three-hour drive there, and we’re barely scraping by—never mind able to afford a trip to Massachusetts and back. I’m really starting to think it’s worth the risk, though.

I also need to get my medical records from Dr. Mongelluzzo (my former primary) and Dr. Greco (my first rheumatologist who retired, which was why I started seeing Dr. M); those records have blood work showing positive anti-dsDNA (and I’m pretty sure a positive ANA, too). I’d like copies for myself, rather than transferring them over. For one, it’s just good to have them. And two, I don’t trust Dr. S to actually read through them (nor do I trust Mongelluzzo’s office to actually fax them over, as I’ve had so many issues with them in the past; they’re very nice but extremely busy). I’d like to make copies of my copies for Dr. S, and highlight things that fit into the puzzle. Basically, I have to be my own detective and advocate.

The problem is, I need to get into Waterbury and sign a release form for each of them (the offices are across the city from each other). This is also a gas money issue. And, I have to pay for copies of my medical records from Dr. Mongelluzzo (I’m not sure about Greco’s office). A friend got copies of hers, and it was something like $2 a page—so I know my records are going to be hefty, since I was there for several years.

So maybe now you can see why I’m so doctor-fatigued. 😂

It’s all got to be done, though, if I’m ever going to get anywhere. I’d really like to start moving forward, because I’ve been in limbo for the past nine years. I mean, I dropped out of the university I was attending for my B.S. in Elementary Education because I was so sick. And I never went back. I’m still paying off those student loans. Even though I really love being an author, it’s not enough. We’re drowning here; I’m frustrated because I can’t work, and Mike is frustrated because his job doesn’t pay enough and he can’t seem to find anything else. It’s kind of funny because we both really want to take care of each other.

He insists that he can handle everything if he finds something better; I insist that, if only I could get better, I could work too and he wouldn’t have to stress it.

I keep hoping that if I work hard enough, write better books, and write enough books, we won’t even have to worry about it anymore. But the reality is, even if I became the best author in the world with the most published books ever, it’s not always possible to make a living. I mean, maybe I’m being cynical and negative, but someone has to be on the low end of the spectrum. Not everyone can be a NYT/USAT bestselling author or even mid-list.

Heavy sigh.

On the plus side, I’ve been pouring all of this frustration into my work in progress (SOF4). Speaking of, I broke 12K last night! *happy couch dance*

I should mention again that I have a GoFundMe page open and, if you’re an author looking for services or just want to help, you can donate and help us catch up on bills. Click here.

Anyway, I think I’ve burbled on enough for now. Thanks for listening. 💜

Elizabeth Barone

Win a $100 Amazon Gift Card!

via Unsplash
via Unsplash

It’s November, which means two things: the election is coming up (eep), and the holidays are, too. While I can’t help you decide who to vote for, I can totally help you with your holiday shopping.

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Disclaimer: This post is sponsored by Schwartz Bioresearch. I received a free bottle of their probiotic supplement in exchange for my honest review. My opinion is my own.