Free Fall

Photo by ian dooley on Unsplash

One of my greatest fears is falling. It’s not the height that scares me. It’s the fast lack of grip, the surge to the bottom. I don’t like being out of control.

Never have.

Ironically, a recurring theme in my life is losing control. I never learn to let go and enjoy the fall, see where it takes me.

Never will.

For the past four months, I’ve been fighting to keep my health insurance plan. My state changed the minimum annual income requirement back in March, and we’re now $400 over the mark. $400 is far from enough to cover the cost of a yearly deductible and monthly premium, plus co-pays and prescriptions. Yet in the state’s eyes, we should be able to afford it no problem. They don’t account for rent and heat. They don’t even look at your income after taxes.

We looked at my husband’s company’s insurance plan, too. Even though it’s a bit cheaper than one of the state market’s plans, we still can’t afford it.

We’re already struggling.

I’m really grateful that we had state insurance these past few years. Because of it, I was able to get a diagnosis and start treatment for my UCTD. Still, we can’t afford another plan, and we definitely can’t afford my treatment and monitoring without insurance.

I looked into several avenues, but they all came down to one thing: soon I’d be out of medicine.

Once I run out of medicine, my disease becomes aggressive. It isn’t long before I’m bedridden again and I’m unable to care for myself. To write. To live.

I felt myself spinning out of control. One of my other greatest fears is my disease. I’ve worked hard to get to where I am. I’ll be damned if I go back.

The fear is suffocating. My rheumatologist and I have determined that Plaquenil isn’t enough, that I need to add other medicines. Plaquenil has been so very therapeutic for me, but it’s not a magic bullet. I still have pain and stiffness, fatigue and brain fog, and other symptoms that may be related but definitely need further testing.

It doesn’t help that someone I love with an even more severe condition is losing her insurance, too. Chronically ill people rely on social services, but those programs are always the first to go when states need to make budget cuts.

I’m too scared to feel angry.

I have one last thing I can try. It’s a long shot, and I’m only going to have a small window. If I’m successful, it’ll be the net that catches me at the bottom. If I fail, well… I guess I’ll have to finally learn to let go.

Can’t Win (Plaquenil, 1 Year)

My Christmas cactus that I got the same day I started Plaquenil.

Today I’ve been on Plaquenil for exactly one year. While Plaquenil and Prednisone worked really well for my joint pain, both gave me some unfavorable side effects. Prednisone made my blood sugar skyrocket and threw some of my other labs off, so I had to wean off it. Plaquenil did okay on its own, but for some reason the GI side effects—diarrhea, heartburn—just keep getting worse. I had to come down to one pill a day instead of two.

I’m feeling it.

My rheumatologist said that if I flare, she’ll put me back on Prednisone, so there’s a good chance I’ll be starting it soon. I want to feel better—and I really want my hands and hips back—but I’m scared of the high blood pressure, freaky blood sugar, and weight gain. So I may have been holding off on making that phone call.

It feels like I can’t win.

This may be TMI, but Plaquenil can be an outright asshole. At first it seemed like it wasn’t getting along with dairy, but now it seems to give me diarrhea randomly. Heartburn, too. You’d think those are minor side effects, but trust me, they can quickly ruin your day. And your night.

SIGH.

Still, I look at posts and pictures from a year ago, and I know these two medications have saved me, side effects be damned. It comes down to a choice: would I rather debilitating joint pain and fatigue, or random bouts of diarrhea and heartburn, paired with high blood pressure, blood sugar spikes and crashes, and hot flashes?

via GIPHY

I’m trying to hang in there until my rheumatology appointment; playing phone tag is not my idea of fun, and I get shitty cell service in my apartment, which makes it even worse. I’d rather speak to her in person and go over our options. (She’s wonderful on the phone, too, but connecting is always a challenge.)

My appointment is almost two weeks away, though, so I’m gonna have to call.

It doesn’t help that I’m facing losing my health insurance, but that’s a whole other post. The gist of it is, my state changed its income regulations this year and we are now just a couple hundred dollars over the requirement. Yet we can’t afford a monthly premium and we sure as hell can’t afford appointments and prescriptions out of pocket. A friend suggested I can appeal the denial, but we weren’t denied—I’m stuck in an Access Health CT website loop. (If you live in my state, you know what I mean.) So that’s another phone call I’m dreading but have to make.

via GIPHY

It’ll work out, though. In the meantime it’s all about managing my pain and anxiety.

On the plus side, if I start Prednisone again, I’ll be able to take notes for my classes. (My hands have not been digging this whole pen holding thing.) I’ll also be able to type faster.

And did I mention that my beautiful Christmas cactus is now a year old? It’s now so full and there are several vibrant blooms (with dozens more budding). A month ago, it didn’t seem like it was going to bloom at all. A year ago, I wasn’t sure I could keep it alive. (I’m all right with succulents, but this one came from a pharmacy and I didn’t know how it would do.)

There’s a metaphor in here about patience and faith. I think.

A Sudden Goodbye

Photo by Ross Findon on Unsplash

Yesterday my father-in-law told Mike that he got a letter saying that our rheumatologist was leaving the practice. I didn’t want it to be true, but I didn’t think my FIL was mistaken. So I called Dr. S’s office.

It’s true.

They couldn’t give me any information. The receptionist I spoke to said she honestly didn’t know. All the staff had been told was that it was personal. It was sudden. I asked about my appointment later this month, and she told me he was already gone.

I’ll be seeing one of the other rheumatologists that day instead.

I’m crushed.

I don’t know how to feel or what to expect from Dr. C. I don’t know if she’ll stick to Dr. S’s treatment plan. If she’ll change my diagnosis. If she’ll even take me seriously. Every time I see a new doctor, I have to start from zero. I have to convince them that, even though my labs are vague, I am legitimately sick.

Every single time.

This couldn’t come at a worse time. I’m dealing with new symptoms, that I thought were carpal tunnel but are now affecting my feet as well as my hands and wrists. There’s a chance that it could be my UCTD developing into Lupus. I need my rheumatologist, who has taken me seriously and worked very closely with me. Not a doctor I’m being shuffled off onto, who now has an even heavier load of patients.

I want to be optimistic. I really do. But it’s hard.

Who Wears Short Shorts? (Plaquenil, 2 Weeks)

It’s been two weeks since I started Plaquenil, the DMARD that will hopefully get my undifferentiated connective tissue disease under control. (That’s just fancy doctor speak for “undiagnosed autoimmune disease.”) I’ve also been taking Prednisone, a steroid. It’ll take up to six months for me to notice any real difference on Plaquenil, so the improvements I feel are all thanks to Prednisone.

Already my morning stiffness—haha—is down by like 90%. I’m still stiff, but I can move, which is amazing. When my alarm goes off, I don’t have to lay in bed for an hour before my body will cooperate. I now usually just lay flat on my back for a few, because my lower back has been killing me lately—especially when I first wake up. Once I’ve taken my morning dose of Prednisone, though, things start to calm down.

I’ve had minimal side effects with Prednisone. I’ll get a couple hours of hot flashes, but those go away. It doesn’t keep me awake at night, either (though I have plenty of painsomnia to keep me company). Usually, once it kicks in, I’ll change into shorts and a tank top—I kid you not. It’s been like 20°F outside and I’m wearing shorts in my house. (That’s -7°C for my non-American friends. Brr!)

These past couple weeks have been relatively smooth sailing. I even got back into a human schedule; I’ve been trying to be in bed by 10 p.m. and up by 8 a.m. Getting up is easy. I have so much work to do—that I’m excited about—and can actually get out of bed, that I can push aside any fatigue. The sleeping part… not so much.

Once Prednisone wears off for the day, the pain comes rushing back in. Plus I may have pushed it a couple times these past two weeks. Last weekend, I helped with my godson’s birthday party. We had 20 kids. 20! It was insane. I also ran after my littlest godson, who asked if he could go to the car, then the poor kid went the wrong way. He was technically doing right. We just didn’t consider that we all moved the cars around and that he might get confused. So Auntie went tearing after him in a total panic (even though my goddaughter was already almost to him). Talk about an adrenaline rush! Which I promptly paid for.

Still, it’s kind of cool to know I can still run; thinking about having kids always freezes me up, because I’m a little scared I won’t be able to properly care for them. Well, adrenaline is my best friend! If I do have kids, I’ll be just fine.

I did yoga the other night—the easiest, most gentle three poses I know. Well, I don’t know whether it’s the super cold temperatures or what, but my joints did not like it. My joints have always snapped, crackled, and popped my whole life, but it doesn’t usually hurt. Well, these past few days, it’s been agony every time. And within minutes of my little yoga sesh—which I was so excited about, because I finally felt physically up to doing it—I was deeply regretting it. My hips, knees, and lower back were screaming. And making sounds I’ve never heard! So, suffice it to say, I’ll hold off a bit longer before I get on the mat again.

I’ve also come down with some kind of cold thing. The most annoying part about being autoimmune is that I get every sickness double. Meaning, if I get a cold, it knocks me on my ass. It also usually attacks my joints. It’s like my immune system gets ultra confused and goes completely haywire.

Thankfully, it isn’t too bad. My joints are actually relatively okay. It’s my throat that isn’t having fun. I’m also ultra-fatigued, and kinda wandering around in a cloud. We all got sick after the party, and my poor goddaughter was miserable the other day. At one point she said to me, “I think I took your suggestion and made ramen, but I don’t remember.” Now I understand why; yesterday, I was all kinds of foggy. I was still able to get some work done, though, and today I plan on tackling even more. My couch is my other best friend; I just pull up the recliner, put my MacBook Pro on my lap desk thing, and work in comfort. The recliner keeps the pressure off my lower back, hips, and knees.

Honestly, I’ve been pretty content lately. That’s probably a whole other post, but I just feel very grateful for the way my life is. I’m still going easy on my wrists. Instead of doing any writing, I’ve been working on administrative things (like my annual inventory, which needed to be done anyway). I’ve also been writing for Textbroker, but limiting myself to one article a day for now. (Textbroker is a freelance platform for copywriters; I can look through all of the assignments, choose what I’m interested in, write the article, and get paid within a couple days. The pay isn’t the greatest, but it’s working out perfectly for me and my situation—plus I’m earning extra money without leaving my home.)

Lately I’ve been missing social media, so I don’t think it’ll be long before I’m back. However, I’ve decided that when I do come back, I’ll be limiting myself to about an hour a week. I have to rest my wrists as much as possible, and it’s also been really nice to take a break from all the negative headlines. This is also a whole other post, but I’m an empath and need to practice lots of self-care so that all the bad news of the world doesn’t completely rip my heart to shreds. I accidentally heard about Aleppo and I’ve been intermittently sobbing ever since.

All in all, though, I’m very optimistic that Plaquenil and Prednisone are going to help me. Unfortunately I can’t stay on the Prednisone for long. I see my rheumatologist next week, so I’m sure we’ll discuss that then. From experience, I know that within a couple days of stopping it, the flareup is going to come raging back. But I have faith that Dr. S will take care of me. I’m in good hands—especially after advocating for myself.


In case you missed it, the Just One More Christmas holiday novelette starring Matt and Rowan is now available! Read the first part here, then grab your copy for only $0.99.

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

It’s Never Lupus… Until It’s Maybe Lupus… Again

via Unsplash
via Unsplash

Being sick is my full-time job, except I don’t get paid, days off, or vacation.

It’s been nine years since everything changed. I went from mostly healthy to being unable to get out of bed during the worst of flares. It all started with a numb arm, then joint pain and fatigue. I got passed from doctor to doctor—none of whom could figure it out. At best, they’d scratch their heads. At worst, they suggested my problem was psychiatric.

This whole thing has been enough to drive me insane, and today nearly pushed me over the edge.

Last fall, I was diagnosed with Reactive Arthritis by my rheumatologist, Dr. M. She said it could still be Rheumatoid Arthritis, but since I’m seronegative and my arthritis seemed to be enthesitis-related, she decided to treat it as ReA. She started me on Sulfasalazine and for the first time in nearly a decade, I started to feel hopeful.

That’s all been ripped away.

Over the summer, I found out Dr. M was leaving the practice. I saw my new rheumatologist, Dr. S, in September, and the appointment did not go well. I still really want to stress that he was very nice. He just didn’t listen. I called the office to complain and after a bit of pushing, was able to switch to another rheumatologist—as long as Dr. S okayed it. In the meantime, I was supposed to get my blood work done.

I finally did last Thursday. It took me a while, because as usual, my life was blowing up. I was dealing with pain and fatigue, financial stress, and my Biz Noni passed away. But I went, even though I didn’t have any expectations. “Everything came back normal” is a string of four words that I’ve come to loathe. However, Dr. S called me back personally yesterday evening. I missed the call, so he left a voicemail asking me to call back as soon as possible.

I knew right away that something had shown up.

I got the voicemail after office hours, so I called first thing this morning. And Dr. S told me that one of the antibodies for Lupus came back positive.

I’ve done this dance before. Anyone who’s been with me since my blog was called Perpetual Smile knows that my previous primary care physician was convinced I have Lupus. But because my blood work is always borderline, that diagnosis was dropped after seeing a rheumatologist. I was with Dr. G for years until he retired, and he always told me that my blood work is at the bell curve—that something is brewing. But “something” isn’t helpful, and if it’s only brewing, I sure as fuck don’t want to know what full blown feels like. Dr. G didn’t want to diagnose me with or treat me for anything until we had something definitive—which could take years. In the meantime, I was miserable.

This whole thing has been maddening.

So here I am again: maybe Lupus. No diagnosis. I can’t work a normal job because my illness makes me flaky, but I don’t qualify for disability because I don’t have a diagnosis. (And even then, when I did have one, I got denied.) Because Dr. S didn’t think I could possibly have arthritis, I was taken off Sulfasalazine. All I have is Tramadol, and it isn’t enough. It tones the pain down to a 8 or 7 out of 10, but often it barely makes a difference. And I can’t function on stronger painkillers.

I’m back to square one. The entire past nine years of labs and doctor’s appointments are meaningless. And while part of me is kind of all “See, I told you so”—since Dr. S kind of dismissed me—the rest of me is seesawing between shock and… I guess denial would be the best word.

I don’t want this.

Do

not

want.

But I do have to admit, ReA never really fit. SSZ helped at first but then I felt worse. And ReA is not triggered by mono, whereas Lupus is. Lupus explains the weird labs, the painless sores in my mouth, the joint pain, the fatigue…

Honestly, though, I don’t know if I can go through all of this again, only to be told “Nope, sorry—we still don’t know what’s wrong.” I don’t know if I can do another eight years of this. I’ll do it anyway, of course, because I need to feel better and I want to know what’s been completely ruining my quality of life.

But fuck me. Again? Really?!

The Complaint

via Unsplash
via Unsplash

Late Monday morning I finally gathered up the nerve to call my rheumatologist’s office. I was super anxious about it because, in the past, I’d asked to see another rheumatologist in the practice and been denied. Apparently they have a policy that patients can’t switch doctors.

I’ve never heard of any policy like this, but no matter how hard I pushed at the time, the office staff refused to let me see the other rheumatologist—even though Dr. M had suggested I see a psychiatrist and sent me on my way. Even though my weekend was very calm and relaxing, by Sunday night I was a ball of nerves again. What if they wouldn’t let me switch? What would I do then?

It wasn’t until I got to my best friend’s house that I was able to call. Sometimes, you just need a buddy. We sat in her office and, while she worked on something for a client, I got on the phone.

“Hi,” I said when one of the receptionists picked up. “I need to speak to someone who I can leave a complaint with…”

I explained everything that happened last Thursday. Calmly. Even though my hands were shaking. The woman I spoke with was very nice. She listened. She didn’t interrupt me. When I finished, though, she explained that it’s against their office policy to let patients switch doctors.

It felt like the floor had suddenly dropped open underneath me and I’d plummeted through. Still, I took a sip of ice water and a deep breath. I was in control, and I wasn’t taking no for an answer.

I reiterated my concerns, that it just was not okay for Dr. S to come in and change everything when I’d been doing so well. Even if sulfasalazine was giving me nasty side effects, it had been helping—which was what Dr. M was hoping. Seeing the results told us that she’d been right, that I have enthesitis related arthritis. We just had to try another DMARD.

I explained that I had really wanted this addressed before it gets much colder, since that’s when I really have trouble with my arthritis. (And I’m already having a really hard time with the cooler temps, but I guess that’s another blog post.) She repeated their policy and explained that, since it’s not really a complaint and “more a difference of opinion,” they wouldn’t ordinarily have me switch. Plus, Dr. C is not currently taking new patients.

Again, I felt the ground giving way beneath me.

But, she said, it just so happens that a new rheumatologist is joining the practice at the end of the month—and she takes my insurance. (Which is state insurance, and boy, do patients on state insurance get treated differently. But that’s also a post for later.) The receptionist told me that she can talk with Dr. S and she’s sure that he will okay the switch. In the meantime, she asked, “You are going to do your blood work, right?”

“Yes,” I said. “Of course.”

She asked if I wanted her to wait to talk to Dr. S, and I said no—I’d rather her speak to him right away. So she was going to send him a message and then the office would call me once they got the new doctor’s schedule. I thanked her and, mostly satisfied, hung up with her.

When I got off the phone, Sandy—who’d been sitting there the whole time—told me that she was really proud of me. “You handled that conversation really well.”

Unfortunately, it just comes with the territory. For the last near decade, I’ve had to learn to advocate for myself. Doctors and their offices are busy, at best. At worst, they don’t want to listen for whatever reason. I’ve been steamrolled by so-called professionals many times—people telling me there’s nothing wrong with me or it’s “just” this or that. It’s hard not to feel beaten down. Throughout my early life, I got spoiled with a pediatrician who usually knew the answers and always listened to my parents and me. I could trust that he would help me feel better, or at least take the time to try.

I could get into all of the things wrong with the medical system—especially when it comes to being a chronic illness patient and a woman—but I honestly don’t have the spoons right now. I’ve spent the last nine years feeling invisible in so many ways. I don’t want to be erased. This is my quality of life, and no one else is going to fight for it.

I’m the only one who can.

I have a young family member who is in the DCF system and placed with another family member. He is special needs and, through DCF, has an APRN social worker who oversees all of his medical and occupational needs. She keeps track of everything and assists his foster parent with setting up appointments and getting different issues resolved. The other day I was thinking about all of this, and how helpful it would be if all people with chronic illnesses were able to have an APRN like that.

I know my body really well, but I don’t have all the knowledge that an APRN does. And since they understand the medical system as well as various illnesses, they can help you accomplish quite a bit.

I don’t know what it would take to get something like this rolling in the U.S. Hell, maybe it already exists. But it sure would be amazing.

Anyway, I’m moving forward. I’m nervous because, for the next month, I don’t exactly have a rheumatologist. I can’t call the office with complaints about my knees, hips, and elbows and expect any results (since Dr. S insisted that I can’t possibly have arthritis, that I don’t need “those medications,” and that I “should be grateful”). It makes me both angry and uneasy. It’s not fair.

But for me and so many others, this is the way it is. Not only do we fight our bodies, but we also fight for our rights as patients. And I get that rheumatologists have polarized opinions on seronegative arthritis. There are countless medical journal articles and research about both opinions. Dr. M was strictly of the “arthritis has to show up in blood work” camp—until I refused to stop coming to appointments and kept reiterating my symptoms and issues. She finally decided to treat me based on my symptoms rather than blood work.

It took me almost ten years to find someone who would.

I can’t afford to spend anymore time working with another doctor who doesn’t believe in seronegative arthritis. Dr. S was very nice and is very much entitled to his opinion. But this is my life, and I refuse to continue being miserable in order to hold his or anyone else’s hand through ten more years of jumping through hoops.