Living with an Autoimmune Disease is Weird

If I’ve gotten nothing else out of this whole autoimmune disease gig, it’s that living with one is fucking weird. I have Undifferentiated Connective Tissue Disease (UCTD). Basically, my immune system is confused and is attacking my connective tissues: joints, skin, tendons, etc. My UCTD could be pre-Lupus, pre-RA, or something else entirely. Right now my rheumatologist is treating it as UCTD with Prednisone and Plaquenil.

Many autoimmune diseases are completely invisible. On the outside, I might not look sick—especially on a good day. With makeup, I can mask the fatigue under my eyes. Unless I’m wearing my wrist braces or using my cane, you might not even notice that I’m in pain. I’ve gotten really good at hiding my discomfort (unless it hits that 8/10 level that I just can’t tolerate).

 

Then there are the completely weird-ass symptoms. My main symptoms are joint pain and fatigue, both of which can be debilitating. Thankfully, my new medications have stopped my current flareup. However, I’ve got the flu again, which has aggravated another symptom which is usually no big deal.

You know how when you’ve got really bad sunburn or a burned yourself while cooking? Or, for those of us with tattoos, that feeling after several layers of color? It’s a raw pain on your skin that is aggravated when you touch it or when something—like your clothing—brushes up against it. I get patches of skin that feel burnt, but nothing is there and I haven’t hurt myself or been out in the sun.

Usually, these “patches” are no big deal; they go away in a couple of hours or a day at the most. They’re often super small areas, too, so it’s easy to avoid irritating them and ignore them. With this flu, though, most of my body feels this way. The flu and illnesses in general tend to aggravate my UCTD, but this is completely new to me. Usually it’s the joint pain that gets out of control. I also find it kind of odd that the Plaquenil isn’t suppressing this.

It’s weird symptoms like this that keep autoimmune patients on our toes.

via GIPHY

As if that’s not all bad enough, most of the time our doctors don’t even know what to do with us. I’ve had physicians suggest I see a psychiatrist, ask me what I want them to do for me, flat out tell me there’s nothing they can do… The list goes on. When you have cancer, you see an oncologist; there’s no such thing as an autoimmune disease specialist, which is a damned shame, because there are a lot of us and very few physicians who can effectively diagnose and treat us.

Thankfully, I wound up with Dr. S, who’s been amazing. If he ever leaves the practice, I’m going with him—even if I have to follow him to the North Pole. It’s that hard to find a good doctor who can roll with the punches of an autoimmune disease; doctors don’t like medical mysteries, because they’re not cut and dry. Hell, I don’t like them either.

Autoimmune diseases are just plain weird, and living with them is weird. Still, I keep on trucking, because I’m too stubborn to lie down and quit. I’m not too stubborn, though, to lie down and rest once in a while.


Do you have a rare disease? What are some weird things about it? Let’s commiserate in the comments below. ♥

I’m a Flu Magnet

via Unsplash

I’m 99.9% sure I have the flu again; my eyeballs hurt, I’m exhausted, my skin feels like it’s on fire, my muscles ache in places I didn’t even know I have muscles… I basically slept all day yesterday, went to bed early, and already I’m ready for another nap. I’m totally okay with that.

Apparently this year’s flu shot didn’t include the A strain flus. Plus, because I’m on Plaquenil and Prednisone, my immune system is a bit, well, nonexistent.

I don’t even know how I got it this time. My friends and their baby have it, but I haven’t been near them specifically because I don’t want it. I probably got it when Mike and I went grocery shopping, and he somehow evaded it.

Seriously. Every time I go out in public, I get the damned flu.

On the plus side, our state tax return came in, which means we can afford to both be down and out.

Advocating for Your Chronic Pain Illness

via Unsplash

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.

Always a Liar

via Unsplash

At the end of December, as my joint pain started to improve, I started having debilitating neck and lower back pain. I knew it wasn’t my UCTD, but still tried to let the Prednisone and Tramadol take care of it. They didn’t touch it. I couldn’t sleep or work, so I mentioned it to the APRN I see at my primary doctor’s office during my followup with her for my Tramadol refill.

I told her that I’d been taking Advil for it, which helped a little, but I wasn’t sure how much I could safely take. Her response? “Just don’t take too much.”

“Yes, but… how much is too much?”

“Just don’t take too much. The Prednisone will help it,” she insisted.

“I’ve been on Prednisone for a month. This is a new issue.”

“The Prednisone will help it.”

A week later, my joint pain continued to improve while my neck and lower back continued to be debilitatingly painful. Since the APRN had refused to offer me any real advice or treatment, and I wouldn’t be seeing my rheumatologist for another two weeks, I tried ice, heat, more Advil, rest. It didn’t improve. On a Wednesday night, the pain got so bad I couldn’t even focus on the TV show that I was trying to watch.

I decided to go to the emergency room—which apparently was a mistake.

This morning, during my followup with my APRN for my monthly Tramadol refill, she asked if I’m seeing any other doctors. Confused, I said, “Just my rheumatologist,” which she should’ve already known.

“Are you getting any other prescriptions?” she asked.

Still very confused, I replied with my usual list: Prednisone, Plaquenil and, recently, Flexeril from my rheumatologist (I’ll get to that in a moment).

“You got a narcotic,” she said.

I’d honestly forgotten about the ER visit. During my followup with my rheumatologist, I told him how the APRN had brushed me off, how the ER had flat out asked me what I wanted them to do for me, and asked him about Flexeril. My rheumatologist wrote me a prescription for it and, within less than two weeks, my neck and lower back were back to normal.

I told the APRN that yes, I’d been to the ER, and yes, they’d prescribed me Vicodin, which I didn’t want.

“Then why did you fill it?” she asked.

“I’m sorry,” I said, “but have I done something wrong? If you remember, I came in here to see you and asked you about my neck and back, and you just told me not to take too much Advil. So yes, I went to the ER.”

I did what I had to do so that I could get some relief.

As usual, she brushed me off, speaking as if I hadn’t said anything. She again started lecturing me, saying that I can’t take Tramadol and Vicodin together.

“I didn’t,” I said, “and the ER doctor knew my current medications and said that it was okay.” I also told her that my rheumatologist prescribed me Flexeril and that worked, that it was all I’d wanted all along.

She then lectured me about dependence on Tramadol, how I can’t go to the ER, and can’t get anymore prescriptions, or she won’t refill Tramadol for me anymore.

“I’ve been taking Tramadol for my arthritis for years,” I told her, “and I’ve never had any trouble with it, nor do I have any history of substance abuse.”

Ignoring that, she started talking to me about Tylenol and Advil. Even though she could have looked in my chart to see all of the various medicines and treatments I’ve tried over the past decade, I explained to her again that OTC pain relievers and NSAIDs don’t help. She then started talking about a new NSAID with an antacid, and how my insurance doesn’t cover it, but next time I’m going to try it.

She also interrogated me about why I waited so long to come in for a refill. I called a week and a half ago for an appointment and today was the earliest they could give me. How is that my fault?

It seemed like she wants to take me off Tramadol, which has long been a happy medium for me. It doesn’t completely take away my joint pain, but it helps enough so that I can function (unless I’m in a flareup). I’ve tried multiple OTC and prescription NSAIDs over the years, all of which she could see in my chart. None of them have worked, which is why I started taking Tramadol.

I was really confused and once again felt like she wasn’t listening to me. Since I haven’t slept these past couple of nights, I just didn’t have it in me to explain once again everything she already knows, things that we’ve already discussed multiple times.

On my way out, I went the wrong way. I’ve been in so many doctors’ offices lately, my exhausted pea brain is directionally challenged. She condescendingly pointed me in the right direction, as if I wasn’t already mortified enough. I stopped at the front desk to make my followup appointment for next month, rather than calling in to schedule it later. Before I left, the receptionist stopped me and asked me to sign a paper.

Again confused, I sat down and read through the three-page document—an agreement about narcotics, with a long list of restrictions. I can’t even fill my prescription at a different pharmacy. What happens if we were to move, or if I wanted to fill it at Stop & Shop while I get groceries?

I know all of this is coming from the new regulations—and of course lawmakers didn’t consider chronic illness patients—but her attitude toward me has always been dismissive. Today I just felt completely dehumanized; she treated me like a liar, like a criminal.

Yet every time my husband has seen her and expressed his health issues and concerns, she’s been attentive and quick to work out a treatment plan for him.

Every

single

time.

I’m glad Mike’s finally getting things taken care of, but previously he hadn’t been to a doctor in over 15 years. I have a long history of having an autoimmune disease and documentation of seeing specialists and trying different treatments. When I see her, my concerns are dismissed; she flat out told me that I have “too much going on,” so she doesn’t “want to touch me.” Yet Mike has even more health issues than I do, and she told him that she would take care of everything.

I’m tired of being treated like a liar and a criminal. I’m tired of being dehumanized, having my pain and concerns dismissed over and over. I’m tired of sexism, ableism, and ageism in the healthcare field. I’m tired of playing this game.

I don’t have it in me anymore. I really, really don’t.

The worst part is, I can’t even just switch doctors, try to find someone who will listen to me and actually read my chart. The APRN told me that she got a letter saying that I’d filled a prescription for Vicodin, and told me that if I see any other doctors or get any other prescriptions, she’ll get another letter.

Which means that, if I change doctors, it’ll just look bad on my end; I’ll just look like I actually am drug-seeking.

No matter what I do, no matter how pro-active I am in my health, I’ll always just be a liar.

Self-Care for Writing Through Trauma

via Unsplash

Note: This blog post is a raw, unedited chapter from my current work in progress, Writing Through Trauma. Part memoir and part inspiring instruction, Writing Through Trauma aims to help you write your way through difficult events in your life. Click here to join my email list to get notified when I post new chapters.


I’m scared, and overwhelmed, and I can’t fucking think straight—and it’s okay.

I just broke down in tears after 30 minutes of trying to write this post using the built-in speech-to-text software on my Mac with the damned thing not picking up half of what I fucking say. I’d hoped that talking through it would help me focus better, but I ended up completely frustrated.

If that’s not a micro example of some of the side effects of writing through trauma, I don’t know what is.

I’m stressed. Shit is falling apart in my country. I’m scared for myself and my family and friends. My health is a bit better thanks to Prednisone and Plaquenil, but my neck and lower back have been fucked up for weeks and the more stressed I get, the worse they are. I’ve fallen behind on my production schedule. I’m months behind on beta reading for my CP. Every time I try to write fiction, I feel blocked or too brain foggy to focus.

I thought I’d just buckle down today and write the next chapter of Writing Through Trauma that I’d planned—”Why Writing Helps You Through Trauma”—so that, at the very least, I might help someone who’s struggling right now too. But the truth is, sometimes it’s a double-edged sword.

Sometimes writing through trauma brings it all back to the surface and paralyzes you.

Writing has never been my enemy. For almost two decades, I was my own enemy—thanks to trauma. But I could always escape through writing. On the page, I could always be myself and speak my truth.

Right now, my truth is fuckfuckfuckfuckfuck.

My biggest fear is how debilitating my chronic illness is if untreated.

My chronic illness is a trauma. For the first 18 years of my life, I was healthy. I came down with colds, strep, and the flu occasionally, but other than that I was strong. I played softball. I went hiking. I worked. I went to school. I went bowling. Then, suddenly, I came down with mono.

It crippled me. My life came to a screeching halt for months. I only had the strength to move the 100 feet or so from my bed over to the couch. For weeks, my doctor couldn’t figure out what was wrong with me. I had severe throat and joint pain, plus debilitating fatigue and muscle weakness. I felt like I was dying. They tested for strep twice and both times it came back negative. My mom had to push for them to test me for mono. It came back positive. I started Prednisone and Tylenol with codeine, but it took weeks for me to recover. I nearly missed our family vacation to Florida. Even when we came home, I was still relatively weak.

A year later, the joint pain and fatigue came back. This time, it never went away.

It’s an autoimmune disease called Undifferentiated Connective Tissue Disease. It attacks the tendons where they connect into my joints, causing joint pain. It attacks my eyes and mouth, making me perpetually dry-eyed and thirsty. It affects my energy. It impairs my thinking, making my thoughts foggy; it’s hard to think of words, names, and places. UCTD can be pre-Lupus or pre-RA, especially if your disease has changed over the years. Mine has.

With the Affordable Care Act under attack, I face losing my health insurance and therefore my healthcare. I’m finally feeling better for the first time in a decade, thanks to my rheumatologist, Prednisone, and Plaquenil. Without my Medicaid, I cannot afford healthcare. Period. I can’t work outside the home due to my disease; most days, it’s a struggle to work from home. Mike works full-time, but everything he makes barely covers our rent and utilities. His company’s health insurance plans are outrageously expensive and we couldn’t afford them before the ACA was passed.

Mike is now finally dealing with his own health issues and, if they continue to go untreated, he won’t be able to work much longer. All I can think about lately is what will happen to us if—when?—the ACA is dismantled.

A two-month supply of Plaquenil costs about $800 out of pocket. I don’t even make $800 a month. We rely on SNAP for groceries, getting only the bare essentials and cooking everything from scratch—even when I can barely stand.

Whenever the inflammation in my body gets out of control, my joints become too stiff for me to even get out of bed. Never mind the pain. I can’t physically move. I’m utterly helpless, which is downright terrifying for a 28-year-old who was healthy 10 years ago.

Living with a chronic illness is traumatic.

I’ve spent the last 10 years trying to come to terms with my disease. I don’t know what is going to happen as it is. Facing losing the ACA takes away even more control of my life.

Trauma is anything that disrupts your sense of safety and trust in the world—your sense of normal. Anything can be traumatic, and the effects of an event vary from person to person.

With so much on my mind, it gets in the way of writing—especially when I try to write about writing through trauma. It reminds me of how much I struggled when I first began writing my trauma stories.

My therapist Erica told me, in our first session, that the end goal was for me to tell my stories. I had to pick three traumas and write about what happened. Picking three was difficult, considering I’ve been living with multiple traumas for so long, and had just experienced a fresh one.

Bullying. Assault. Rape. Miscarriage. Chronic illness. Unexplained death of a loved one. Forced hospitalization.

Every time I started writing about what happened to me, I’d get overwhelmed with anxiety. Writing about it only seemed to aggravate my anxiety, depression, and flashbacks. I kept having to stop and put it away because I just couldn’t deal.

When that happened, I had to practice self-care.

When writing through your trauma, it’s imperative that you allow yourself to write at your own pace. Recognize when you need to take a break or stop. Give yourself permission to stop. Be gentle with yourself.

For me, it had to be a gradual process. Some survivors might be able to rip off the Band-Aid, but I could only write a little at a time. First I was able to mention both of my rapists, for example, while writing in my journal. Before, I’d suppressed the bad memories; I never wrote about either of the men who raped me because I just knew that I despised and feared them. I could barely recall other things from the time that they’d each been in my life. Large black clouds comprised most of my memories, even devouring good things, leaving great wide holes.

When I was a teenager, I dreamed that a black oily substance was eating the sky. In the dream, my family and I were trying to figure out what was happening and how to stop it. Bit by bit, the sky—and world—disappeared.

I’m still trying to reclaim much of my own sky.

Since trauma survivors often suppress memories in the brain’s attempt to keep you alive, it made sense that I had a lot of digging to do. And the more I dug, the harder the flashbacks hit me.

My nightmares intensified. The panic attacks came more frequently. I was constantly snapping at the people around me—usually Mike. I knew that it was going to get worse before it got better, though, so I kept trying.

The more I wrote, the more I remembered. Even though I didn’t really want to remember because I knew it’d be painful, I really wanted to get better. I wanted to stop having panic attacks, to become motivated and productive again. I wanted to actually feel happiness, to grow stronger. To reclaim my life and my voice.

So I took my time.

I started a new bedtime ritual: Benadryl to make me so drowsy and calm, my anxiety couldn’t keep me awake; one ASMR video on YouTube or a round of Bejeweled to clear and calm my mind; one chapter of a familiar audiobook read in a soothing tone that I could drift off to; stuffed animals to hug tight while I slept. It’s been over a year and I still go to bed like this every night. Someday, I’ll be able to let go and fall asleep on my own. But for now, I give myself permission to continue this ritual for as long as I need it.

I carved out a strict workday for myself. Monday through Friday, I only work from 8 or 9 a.m. to 5 or 6 p.m. I don’t work weekends. Evenings are for my “me” time—reading, watching TV or movies on Netflix, or playing Sims. If, during the workday, my body needs some rest, I take a short 30- or 60-minute break just to sit comfortably, maybe read a book or watch Netflix.

I got myself back into a healthy sleep schedule. I’ve always been a night owl, but letting myself stay up all night and sleep until noon was hurting my productivity and affecting my mood. I use my iPhone to remind me to go to bed by 11 p.m. and wake me up at 8 a.m.

I eat three meals a day, plus snacks—no matter what. Since I’m hypoglycemic, skipping meals can make me very sick or very anxious. Even if I don’t have much of an appetite, I eat something small.

I take all of my meds on time. I use a weekly pill box with morning, noon, evening, and bedtime compartments, and Alexa to remind me to take my pills. Right now my meds are: Prednisone, Plaquenil, Tramadol, Flexeril, Vitamin B12, Vitamin D, Benadryl. I take them religiously.

When I’m not too sore, I do yoga. It’s been a while, to be honest, and I’m feeling it. I also meditate, practice deep breathing throughout the day, and write in a journal. Up until recently, I couldn’t hold a pen in my stiff, sore fingers long enough to write down the date, so had to give up journaling—which was really hard to do, and I’m really glad I can write again.

I shower regularly, do my makeup to boost my mood, and get dressed even when I’m not leaving the house. Sometimes I just let myself stay in my pajamas all day, though—whatever makes me feel best.

For you, self-care might mean different things. What’s most important is that you take care of yourself. Treat yourself as if you were your own sweet child. Be kind and gentle, but firm when necessary.

What are your favorite self-care tools? Leave a comment and tell me three of them!


Note: This blog post is a raw, unedited chapter from my current work in progress, Writing Through Trauma. Part memoir and part inspiring instruction, Writing Through Trauma aims to help you write your way through difficult events in your life. Click here to join my email list to get notified when I post new chapters.


Read More: Chapter 1

Fuck Arthritis

via Unsplash

Lately, I’ve been struggling.

There. I said it.

I had so many plans and hopes for this new year—so many things I wanted to do. Yet these past couple weeks, I’ve been mostly immobilized.

I’ve been bedridden before. I’ve spent entire winters doped up on painkillers, binge-watching whatever from the relative comfort of my bed. But this winter was supposed to be different. I’d started Plaquenil and Prednisone, and they were helping. Then they weren’t—or at least, not as much.

It started off slowly. The joints in my neck and lower back hurt, but the pain was tolerable. As a whole, I was feeling better; I could actually use my hands again. Then the joint in my neck swelled to two or three times its normal size, and my back joined the screaming chorus.

At first, I thought it was my new pillows. I’d bought a couple king-size pillows and they’re super thick. I figured I’d tweaked my neck while trying to sleep on them. I bought a less thick pillow and the pain immediately improved. Until it got worse again.

So then I thought it might be my work setup. For the past few months, I’ve been working from my couch. Not the most ergonomic setup—especially since I tend to lean into my computer when I really get into whatever it is I’m working on. I became more mindful of my body while working, keeping my neck and back more straight while on the couch. Mike joked that we should duct-tape my head to the couch to keep me from leaning forward and putting strain on that joint.

I also cleaned up my office a bit and returned to working at my desk. It’d become a bit of a dumping ground these past few months—getting more and more cluttered as I felt worse and worse. Even still, with a proper desk and chair, I can’t sit at the computer for very long. If I’m lucky, I’ll make it 40 minutes.

The only time my neck and back aren’t screaming is if I’m reclined on the couch with full blast heat on them—or flat on the floor on my yoga mat. Alternating heat and ice was helping, but the other day I iced my neck for no more than 20 minutes and it made it worse. A lot worse.

Last Thursday, I saw the APRN at my GP’s office. I had to go in for a refill anyway, and figured I’d have her look at my neck—which was my biggest concern, considering the joint is so swollen. I told her what I’d been doing: TENs machine, Advil, rest, ice, heat, Tramadol (as well as my Plaquenil and Prednisone). She said the joint was definitely swollen. I explained that the Advil was helping a little, taking it down by a notch, and told her I’d been taking two Advil three times a day. I asked her if I could take more and, if so, how much would be safe to take in a given day.

“Don’t take too much, or it’ll cause an ulcer.”

“Oh, of course! But how much can I safely take?”

“Just don’t take too much.”

I wondered whether I’d accidentally walked into an episode of Punk’d. “Okay, well, is there anything else I can do? It’s really painful.”

“The Prednisone should help it.”

“Well… I’ve been on it for a month, and this is a new problem.”

She mentioned Prednisone again, completely brushing me off.

It wouldn’t have been such a big deal, if my husband hadn’t recently been in to see her about his swollen knee. She prescribed him a relatively new NSAID: ibuprofen 800, which also has an antacid in it to lower the risk of ulcers. I don’t think she does it on purpose, but she doesn’t listen to me. There’s definitely a gender bias when it comes to patients, and until now I’d never really dealt with it so blatantly. When she sees Mike, she’s on her game, helping him with all of her expertise. When she sees me, she either laughs me  off or ignores me completely.

That’s not even what I’m really angry about, though.

Every day, I fall further and further behind on my production schedule. I try to do simple things around the house—like cleaning my bathroom—and I pay for it for days. For a brief window, I got a glimpse of what it’d be like to live with low pain. (On one particular Sunday, it went down to a 5/10!) I started to feel hopeful that I’d get my life back. I know there’s no cure, that I’ll never be pain-free again, but every time I turn around, I feel like I’m losing yet one more thing.

I haven’t worked a normal job in years.

I haven’t been able to write in months.

I’m just really tired of this disease taking from me, and I still don’t even really know its damned name.

And, if I’m being really honest, I’m a little scared.

My pain has changed; now when any of my joints creak, there’s pain where there wasn’t before, and the pain in my neck and lower back is a burning pain that creeps up and down my spine like fire. Every time my disease changes, we find another piece to the puzzle. My doctors have said so many times that something autoimmune is definitely brewing, and I’ve joked that if this is “just” brewing, I don’t wanna know what full force feels like.

So I wonder: Is this full force? Am I about to get the answers I’ve been wanting? And, if so, will I like those answers?


I have a really hard time asking for help, but I’ve got electricity/heat, student loans, and other bills creeping up on me. If you’d like to help, you can buy my books, throw me a tip on PayPal, or donate to my GoFundMe. If you can’t help financially, a comment offering virtual hugs would really lift my spirits. I appreciate your support, in whatever form. 💜

The Pain Isn’t the Worst Part

via Unsplash

The worst part about this autoimmune disease isn’t the joint pain. Most people my age without children are out living it up: drinks at bars with friends, casinos to celebrate birthdays, rock concerts just for the fun of it, hiking in the fall. All of these things I can’t really do anymore. Very rarely is it that I have the energy or feel physically well enough to participate in, well, life.

This weekend is a perfect illustration.

Right now, I’m in a flareup; even though I’m on medication, it doesn’t completely get rid of the fatigue and joint pain. It also doesn’t help that I’ve got a cold on top of the flareup. (Yup—the one-day sickness that everyone else had has morphed into a full-fledged cold for me.) I’m exhausted. Plus, between painsomnia and now being sick, I haven’t had a good night of sleep in a few weeks. Still, on Friday I pushed myself to go to my family’s annual girls’ cookie baking date.

By the time we finished, though, I was exhausted. The cold had moved south; it felt like I had a frog in my throat and an elephant sitting on my chest. I was supposed to go to a surprise birthday party for a family friend that evening. The problem was, I knew if I pushed my body and went, I’d definitely be useless all day Saturday.

And Saturday—today—is the second launch party for Phat Lip, the art magazine that my husband is a partner in.

I missed the first launch party because, you guessed it, I was flaring and didn’t feel well enough to go. I never feel well enough anymore. I know Mike doesn’t resent me for it, but I can tell it bums him out that I barely attend his events. It bums me out.

Before the launch party tonight, we’re supposed to go to my parents’ for a homemade pizza night. And with the way I’m feeling right now, I doubt that I’ll make it to either gathering. The cycle will start anew.

Mike will go out without me, and I’ll stay at home lonely and missing out.

I always have to choose: between sick or sicker; between washing my hair or cleaning my toilet; between getting much-needed rest or getting work done; between participating in life or maintaining the tiny bit of health that I have. The best metaphor I’ve ever heard for this is Christine Miserandino’s spoon theory.

So many people don’t get it. Those that used to text me to make plans stopped trying. I’m flaky, cancel-at-the-last-minute girl. Others rib me for never seeing me. I’ve even been guilt-tripped several times. Thankfully, there are two people in my everyday life who truly do get it, and that’s only because they too have chronic illnesses.

The holidays for me are the hardest, because I just can’t do the house hopping thing. I don’t get to connect with much of my family and friends. This time of year is rough in general, because the cold weather, my flaring body, and my compromised immune system keep me holed up. I miss out on everything, and I can’t risk pushing through, because if I do I’ll pay for it for days afterward.

But it seems to me that there’s an even greater price, one that I can’t seem to recoup.

That—the missing out—is the worst part of being chronically ill.

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