It’s been a full week since I last posted here, which is weird for me because I’m usually a font of word vomit. I managed to come down with another flu virus, though, so I’ve been busy napping. This bout was particularly nasty and, from what I understand, it’s been going around. I didn’t even bother to get swabbed, because the second my eyeballs started hurting and my temp started climbing, I knew.
Still, it’s been rough. For several days, I had muscle, joint, and skin pain. Yes, skin pain. It’s a thing I sometimes experience with my Undifferentiated Connective Tissue Disease, but it’s never a big deal. This? Was hell. I couldn’t move, because every inch of my upper body felt like it’d been badly sunburned. Showering and toweling off after? Hell, I tell you. The muscle and joint pain were nasty, too. On its own, the joint pain would’ve been a 6/10 and the muscle pain a 4/10, but the three together were damned near unbearable.
I decided not to call my doctor because A) Tamiflu only shortens the flu by like two days and B) I kind of currently don’t have a primary care doctor. My doctor’s office has been blowing me off ever since I sent in my letter of complaint, and I honestly didn’t have the energy to talk to them about my concerns and explain my symptoms—especially since they don’t listen in the first place.
I just toughed it out, and I’m still recovering. At this point I just have a runny nose and dry cough, and I’m still easily fatigued. I do feel better, though, so I really can’t complain. However, I’ve also come down with a touch of stupid depression.
Granted, I think anyone in my shoes would feel this way. I’ve been through a lot lately, and things pretty much suck in my country right now. For the past several weeks—months, even—I’ve been in survival mode, reacting as I need to and staying on my feet. It’s not at all surprising that I got the damned flu again. In emergencies, I’m always the one to panic after it’s all over. Today I burst into tears and had to remind myself that Mike is okay, I’m okay, everyone’s okay, we got through it all, we’ll get through everything else.
I guess I just haven’t had the time to process everything.
So while I’m recovering from the stupid flu, I’m also working on processing the past few weeks and the things that I know are to come. I’m also working on easing up on myself; I put a lot of pressure on myself, and tonight I realized it’s time to let it go. Writing has been really hard for me lately. I had a lot of plans for 2017 and the only one dictating what I “need” to do was, well, me. I’m working on clearing my plate a bit and giving myself room to recover, as well as room to just be, and then room to grow.
I’m also working on my author website this week, so if it goes down for a while, don’t worry. I’m not going anywhere.
Sometimes, you just need to pause and practice breathing—and that’s exactly what I’m doing.
It’s hard to believe that it’s only been 10 days since Mike’s surgery; ever since then, it’s been pouring on us. I could sit here and list every single thing that’s gone wrong since, but 1) it wouldn’t really be productive and 2) ain’t nobody got time for that.
I’ve got articles to write, 15-20K to reach for SOF4, and a nice hot shower to take.
These past 10 days have been very difficult and stressful—my blood pressure was 140/92 when I checked it Wednesday night, and that was hours after I blacked out, so I’m guessing it was much higher—but Mike and I are fucking scrappy. We’ve rallied so many times these past couple weeks, and somehow we’re still cracking jokes and cracking each other up.
We also have fantastic family and friends who have helped us in so many ways, more than I could ever count or repay. Even simple things like late-night face time with my best friend, sitting outside just talking. I told my mom last night that, while I was bailing out my tub earlier, I had a moment where I was thinking Where are the grownups? and then realized Shit—I’m the grownup! We laughed way too hard because she told me she still has moments like that.
Adulting is hard, but no one actually knows what they’re doing. Which, if you want to be cynical, could mean that we’re all just a bunch of overgrown and unsupervised kids, but I’m just grateful that I’m not the only one who doesn’t always have the answers.
It’s only February and I’ve already changed my business plan and production schedule several times to roll with life’s punches. At this point, I’ve decided to just focus on writing for now.
It kind of sucks, because I wanted 2017 to be a publishing year for me, releasing something new every quarter or even every two months. Since my blood pressure is high, though, I need to clear my plate as much as possible. Right now I have no release dates in mind, but I’ll let you know as soon as I know when SOF4 will come out. In the meantime, check out this teaser. It’s dead sexy.
For the time being, I’m buckling down and focusing on just writing and taking care of everything in my immediate world. To keep up with me, subscribe to my newsletter.
I like lists. Schedules. Planners. Being prepared. As much as I appreciate order, though, life continues to teach me that I can’t control everything.
Life is what happens while you’re busy making other plans.
Sometimes, there’s nothing you can do other than let go and focus on the things you can change.
I’m learning this more and more lately.
Because I have anxiety, I can easily spin out—especially when there are too many what ifs hanging over my head. I’ve always been observant and curious, which are both my best and worst qualities. I see everything. I always have. Sometimes it’s a bit like being the psychic in a Stephen King novel. You just know shit’s gonna hit the fan, but no one will listen to you because you’re weird.
I can be stubborn and pushy, which almost never works, but I have a really hard time letting go and letting be.
Especially when it concerns people I love.
But more and more I’m learning to focus on me. Even when it feels selfish or wrong. Because, at the end of the day, the only thing I can control is what I do.
Because the truth is, no matter how observant I may be and how much I might worry, I still don’t know what the future holds. Not for sure, anyway. By working on myself, though, and making sure my own world is stable, I can be more available for others—and whatever comes next.
My worry list is long, but the more I work on myself, the more capable I am of coping with those worries.
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.
I 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 firstname.lastname@example.org. 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!
I 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.
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.
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? 😜
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.
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.
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.
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.
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.
Yesterday morning, I finally fell asleep somewhere around 6am after being up all night in pain. I woke up around 11:30am to a text from my mom, asking me to call as soon as I could. It was from around eight in the morning. Dread filled me; I knew something was wrong. Since I’d taken Tramadol so late, I was still feeling the side effects. Which is why, when I called my mom and she told me my sweet Biz Noni had passed away, all I could say was “Oh.”
Then it slammed into me.
I hadn’t seen her in a few months. She transitioned into a nursing home last year when her dementia started getting really bad. I visited her from time to time but wasn’t able to as often as I would’ve liked. I was planning on going to see her this week, since Mike is on vacation from work and I could take the car.
But it was too late.
I’ve been kind of numb today. I’m really sorry that I didn’t go see her sooner. I feel horrible about that. She deserved better. And even though I know that she knew she was loved, I still feel bad. Lots of family visited her on a regular basis, and she’d made friends in the home, so she wasn’t alone. I guess I just wish I could’ve told her one more time how much I love her.
Though I’m glad she’s not suffering anymore, it hurts so much to say goodbye. She was one of the sweetest, most stubborn people I knew. Some of the things she’d come out with had me in stitches. You’d think a white-haired ninety-five-year-old would be demure, but not my Biz Noni. She loved to bust balls and always played “The Matriarch” card whenever anyone tried to give her shit. “I’m The Matriarch,” she’d say, and that was that.
Biz Noni had a sweet tooth, too. The older she got, the more she looked forward to her desserts. We’d barely be done with Christmas dinner, for example, and she was already asking about dessert. I’ve decided I’m going to dedicate my bakery romance Just One More Minute to her. It’s only fitting.
I have so many good memories of my Biz Noni: her babushka on a cool night around the campfire; playing “office” and “doctor” in her living room with my sister and cousins; making cookies, cappelletti, and gnocchi in the kitchen with her and the rest of my family; watching black and white movies with her on TV…
I don’t really know what else to say right now. Like one of my cousins said last night, I thought she’d be around forever. She always had. She remembered everything up into her nineties, and then all of a sudden it didn’t. The dementia was so fast. I guess my mom is right, that it’s kind of good that the last time I saw her was when she was still doing relatively well.
I just wish I could’ve given her one last kiss on her sweet, soft cheek and told her I love her one last time.
It’s five in the morning. My joints are bright hot fireballs of throbbing death. I’m exhausted and have been all day, but the pulsing ache in every single joint of my body is like an alarm clock blaring in my ear. When I’m in pain like this, all I can focus on is the pain. All I want to do is whimper. The only thing I can talk about is how much pain I’m in.
My chronic pain runs my life.
The thick gray smudges under my eyes, the tangled nest of curls bundled up on top of my head, the inward curve of my shoulders—all of it a portrait of the pain I live with when I don’t have a DMARD combatting the inflammation in my joints/tendons. And I’m frustrated all over again, because I’ve been denied those medications. And I’m really feeling it.
I got comfortable. I’d been on SSZ and maybe I took it for granted. Constant headaches and a perpetual metal taste in my mouth seem easy compared to what I’m feeling right now. Maybe I shouldn’t have complained. Maybe I should have kept swallowing the pills and taken what little relief they gave me. I was ungrateful, and now I’m paying the price. The warm summer months rolled in, easing my transition off SSZ. I went swimming. I ran errands. I cleaned my house.
Now I’m lucky I can move at all.
I hate the cold months. I know everyone is reveling in fall right now, but all I want to do is give those who are celebrating sweaters and Instagramming photos of leaves the stink eye. Because for me, October through May is hell unleashed.
If it hurts to die, this is exactly what it feels like.
I don’t mean to be melodramatic. It is five in the morning and I should be sleeping. I’m usually sleeping at this hour. I have places to go and things to do during normal morning hours, yet I will have to choose between resting and getting blood work done. My knees and hips hurt so badly, I feel like I need a wheelchair.
I’d go to the emergency room if I thought they could do anything.
What I need is a different DMARD and a hefty dose of Prednisone to get me through until it starts working. I need a doctor like the ER attending who knew that inflammation was my issue, even if my blood work said otherwise. I need someone like the PA I used to see, someone who listens and won’t give up. Dr. M was becoming that someone, but she left the practice. And now I just feel so fucking lonely and depleted.
I don’t know how I keep doing this. Living with this is the hardest thing I’ve ever done, hands down. And I’ve been through a lot of difficult things. I’m not saying I’d rather go through them again—they were eviscerating enough on their own, thank you—I’m just saying that this is so hard and I’m so tired. I’m out of spoons—emotionally, mentally, and physically.
I’m done yearning to be normal. It’s been nearly a decade. At this point, it’s not going to happen. I just want some kind of quality of life. I don’t want to burst into tears because I’ve dropped the cap to my water bottle and can’t physically make it across the kitchen floor to retrieve it. I don’t want to feel lonely at almost 5am because my husband went to bed hours ago. I don’t want to slap a temporary painkiller Band-Aid on my gunshot wounds, hoping that Tramadol will bring my pain down to a 8/10. I don’t want to feel like I’m missing out while my husband, brother-in-law, and niece hang out at a gallery and I stay home because I feel like microwaved zombie.
I’m just so fucking tired.
I’m not going to do anything more drastic than smoking a cigarette, but I need all of the love, strength, and support that I can get right now. I feel almost cheesy asking for this, but if you can even just leave a comment with hugs, that would be so helpful.
This probably goes without saying, but I’m taking Wednesday off.
On the bright side, I wrote 400ish* words for SOF4, and it’s officially #OwnVoices because I’ve given Krista my enthesitis related arthritis. Tonight’s—this morning’s?—session was basically just a long description of how much everything hurts her, AKA me. Here’s a little snippet:
Hot twinges buried themselves in Krista’s knees, bringing the world into razor sharp focus. She winced, then quickly smoothed the expression on her face.
“We’ve got to do something,” Perry repeated. “The entire band’s gonna implode if we don’t handle this.” A large curled fist lightly smacked the palm of his other hand, punctuating his last few words.
Her cheeks twitched into an involuntary smile. His passion was endearing. “I’ll let you know,” she said softly, her shoulders curling inward. Sliding her phone from her pocket, she glanced at the time. Shit. It was time to get to class. She swallowed hard. She barely had the energy to walk there, never mind sit through the lecture.
“Hey,” Perry said, his voice low and soothingly warm. “You all right? Your cheeks are kinda flushed.”
Great. She inhaled through her nose, gathering her strength. “I’ve got to go.” With every ounce of energy, she pushed up from the bench. “I’ll talk to you later?”
He shrugged. “Sure thing.” He raised his coffee in a salute.
Turning, she forced herself to walk away like a normal person. Her joints protested, the ache deepening. If that was even possible. She gritted her teeth, stifling the scream rising in her throat. She was so tired—tired of being in pain, tired of trading her life for more rest. And now, with South of Forever in such a bad position, she was going to be even more tired.
* * *
Krista was in a bad mood when she finally got out of class. For one thing, it’d run fifteen minutes over. The pain in her knees had increased, as well as taken residence in her elbows and wrists. For some reason, the knuckle of her left thumb was aching, too—a hot, pulsing flare. Yet, from the outside, her body looked completely normal.
Her phone buzzed in her pocket. Stepping off to the side of the hall she was walking through, she fished it out and read the text from Poppy.
Where are you? We need to start recording. xx
The double exes were like a haphazard “LOL,” thrown in as insurance. Their sole purpose was to placate the terse, demanding tone of the other words. Krista was fluent in girl speak.
Sighing, she texted back a simple “OMW,” and resumed her trek toward the building exit. Her body protested with each step, hinges stuttering when they should have bent smoothly. By the time she got to the double doors, she’d made up her mind.
She opened the Uber app with a quick swipe and a tap, not even bothering to look at the screen. She knew her iPhone better than she knew her own body—a fact that was twice as true, since said body was constantly rebelling. She longed for the warm summer months when she’d have little pain.
Her heart whispered “Soon,” and she shuffled through the double doors and into the sunshine.
*I initially thought I wrote like 600 words, but I just checked the word count and was kind of disappointed. But something is better than nothing, right?
For quite some time, I had a hard and fast rule: no social media on weekends. Over time I started bending it. After all, my life doesn’t stop on Saturdays and Sundays, and I enjoy sharing it (especially on Twitter). I still try to hop on as little as possible, using my time to just recharge. But this weekend, I needed a cold turkey cleanse.
I completely unplugged from both Twitter and Facebook—a feat that required gargantuan effort. Actually, Friday night I hopped on several times “just to see.” What I was trying to see, I don’t exactly know. Truthfully it was my way of getting another fix. I didn’t cut myself off from Instagram and Pinterest, but I used them only minimally. Mostly I relaxed.
On Saturday, I slept in until 2:30pm. My friends with children are glaring so hard at me right now, but in my defense I hadn’t slept Thursday night, and I’ve been fighting off flareup fatigue while juggling anxiety attacks. I desperately needed the rest—even if I woke up somewhat panicked because more than half the day was already gone.
Sometimes, you just need quiet time.
Because the last couple of weeks had been full of panic attacks, I really needed to calm my mind. Thankfully, my old therapist E gave me some really great tools. I used eucalyptus essential oil to combat my three-day tension migraine. If you put some on your chest, the back of your neck, your forehead, and temples, it really helps sooth the pain.
I also binged The Fosters. If you haven’t caught this show, you need to. Going in, I thought it was going to be a lighthearted family show. And for the most part, it is; no matter what happens, you know the Adams-Foster family goes to sleep with love in their hearts. But damn, do they tackle some heavy stuff. They do it in such a way, though, that you can’t help but feel good (even after they’ve played with your emotions and made you cry). I love the healthy relationships and choices they portray. No matter how hard things get, there’s always a chance for these characters to move forward. And the fact that this show is so pro-LGBT+ makes it even more of a winner.
In between episodes, Mike and I started Luke Cage, which is like a billion times better than those other Marvel shows. *cough* Daredevil *cough* Jessica Jones *cough* I’m pretty sure I’m the only person who doesn’t dig those shows. I tried really hard to like Daredevil, but I couldn’t even get through one episode of Jessica Jones. However, Luke Cage is kick-ass. Maybe it’s because Mike Colter is oh-so-damn handsome. Or maybe it just took some time for the team behind these shows to really hit their stride. But the acting, pace, story, and characters are just phenomenal. We’ve only been able to watch one episode a night, and I’m dying for more.
Side note: I recognized Colter from Ringer and The Following right away. I was super excited, because I loved him on those shows. He’s such an awesome actor. And did I mention how gorgeous he is? 😍
We also went grocery shopping, which ended up a bit more of an adventure than intended because we ran out of money before we could finish. Starving artist problems, sigh. I’m so looking forward to the day when we don’t have to worry about these things. But we have enough to get us through the next couple of weeks, and that’s all that matters.
On Sunday, I spent the entire day binging The Fosters and working on a project I’d thought I’d completely abandoned. Back in 2007 when I was in college, I took a crafts class as an elective. It was a difficult course because it was very hands on, and that was around the time when my arthritis first started. I had to get a doctor’s note to skip certain projects because they put too much strain on my wrists, and it broke my heart. However, there was one activity that I really fell in love with: embroidery.
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Even after the semester ended, I continued playing with it, learning new stitches and working at my own pace. Though it is hard on my hands, I’ve found that using a hoop really helps. Frequent breaks, too. 😉 I’d started a project in 2012-ish, recreating leaves placemats that I’d seen in the Kohl’s store I worked in at the time. They weren’t even that pretty, and the store had jacked the price way up. I thought to myself, I can totally make those, and started… but never finished.
In fact, when I picked it back up again this weekend, I realized I’d made even less progress than I’d thought. I was able to finish my first one, though, and nearly completed a second. By the time I went to bed last night, I was so relaxed, I dropped off to sleep almost right away. And I didn’t even need the eucalyptus oil!
This weekend I also got to spend a little much needed time with my sister-in-law. We jammed out to this song on the radio, which I’d heard before but hadn’t caught the artist. Now I know and Kiiara is fantastic writing music. I just love how chill this song is, and her voice is angelic.
This weekend I learned something really cool about myself: No matter how hard things get, I’ll always work through them and move forward. In the past, my anxiety and depression have felt suffocating, like they would go on forever and ever. While my anxiety was pretty bad these last couple weeks, the key difference this time around was that I knew eventually it would pass—especially if I kept using my self-care tools. This time last year, I was so lost, but in the past twelve months I’ve grown in leaps and bounds. I’m a completely different person. I’m still me at my core, but I’m also stronger. More confident. Empowered, not ashamed.
In the quiet of my calm mind this weekend, I sat reflecting on all of this. It feels so good to be in this place, to be this version of me. Even though I still have my challenges to work though, I’ll always keep moving forward.
And when I need a break, I’ll keep making myself unplug, for fuck’s sake. 😉
It’s been over 24 hours since everything went down and I’m still processing it. Everyone processes things differently—even from experience to experience. Sometimes you need to talk, even if you’re relaying the same information over and over. Other times you just need to quietly mull. I’ve found, in this instance, I’ve needed both space to just absorb and room to articulate.
Even though I’ve talked about it a bit on Twitter, written in my journal, ranted (like a hundred times) to my husband, vented to my sister-in-law, and tiredly filled my best friend in, I still keep running through it over and over again. And, even though technically I’m on a weekend-long social media cleanse, I really felt the urge to sit down and blog about it.
So here I am.
Part of me is in shock, enveloped in complete and utter disbelief. And then there’s the wide-eyed anxious part of me that is all, “See, I told you so.” I’ve been through this before, though, so many times. It’s not really surprising. It’s kind of just my norm.
This past summer, I got a sudden letter in the mail from my rheumatologist’s office, telling me that Dr. M was leaving the practice. I had a panic attack while reading the letter. While I’ve had a complicated relationship with this woman—during my first ever appointment with her, she suggested I see a psychiatrist and that was that—I’d made a lot of progress with her. She was listening to me, she’d given me a diagnosis, and she’d started me on a treatment plan. I spent years jumping through hoops trying to prove to her that I am not a drug addict or crazy. And finally, after nearly ten years, I was making progress in my medical journey. I was getting my life back.
I have joint pain. Often it is debilitating. There is radiological evidence of it; I’ve had several x-rays, MRIs, and even a bone scan that showed bone spurs and some other things in my joints. My illness causes marrow-deep fatigue. It flares from time to time, especially during periods of high stress or sudden changes in weather (like winter, rapidly increased humidity, or a drop/rise in barometric pressure). It behaves like an autoimmune disease—which runs in my family. However, my blood work is always inconclusive. I am seronegative for RA and I’ve had borderline results for ANA and double-stranded DNA.
Dr M determined that I have enthesitis-related arthritis, meaning the join pain is caused by inflammation in my tendons, where they connect to my joints. She explained that ERA doesn’t show up in blood work. She told me that she would treat me as if I have Reactive Arthritis, but that it could still be Rheumatoid Arthritis. She started me on a DMARD and, when it helped a little but had some nasty side effects, urged me to give it another shot. If it still gave me headaches and fatigue, she said, we would try something else.
And then I got the letter.
The letter informed me that she was being replaced by Dr. S, some guy I’d never heard of. I was immediately anxious because I’ve had so many specialists—most of them male—over the years who have brushed me off. I’m anxious in general when seeing a new specialist, but the thought of losing Dr. M and having to start over with a stranger was terrifying. Still, I tried to be brave about it.
I scheduled one last appointment with Dr. M, where she gave me a cortisone shot in my right big toe and explained that she thought I had bone spurs there and in my other big joint in my foot. She said I might possibly have RA and osteoarthritis. And she urged me to give SSZ another shot, even though I asked if I could try another DMARD.
She instructed me to schedule a followup with the new guy for my toe. Cortisone shots don’t always work, and she really wanted me to see a podiatrist if my toe continued to be painful. It was so stiff and hurt so much, I could barely bend it. I couldn’t put weight on it at all and basically had to walk on the ball of my foot—which of course aggravated the pain in my other joints.
I couldn’t schedule my followup yet because the office didn’t know Dr. S’s schedule. This kind of irritated me, but I talked myself down and told myself to give him a chance. I was supposed to call the office to schedule it in a few weeks, but I got super busy with book stuff and it was summer. I always have very minimal pain in the summer, plus the cortisone shot helped and my toe was better. Plus, if I’m going to be honest, I was still super anxious about seeing the new guy. As summer wound down, though, I knew it was time to get back to my health and bite the bullet. So I did it. I was super proud of myself.
In the weeks that passed while I waited for my appointment, my arthritis started flaring. I felt fatigued every day. My joint pain increased. I’d stopped taking the SSZ again because the headaches and other side effects far outweighed the benefits, though it did help a little so I knew we were on the right track. I’d talked to other spoonies with similar diagnoses who’d recommended some DMARDs, so I knew for sure I wanted to try something else.
On the morning of the appointment, I got up early. I was anxious the night before so I didn’t sleep well, but I did sleep. I ate a tiny breakfast even though my nerves were shot. I treated myself to a coffee from Dunkin Donuts. I showered, dressed up—which is special because I’ve mostly been wearing shorts or leggings—and did my makeup. I made a huge effort to make myself feel good. And, I’ll be honest: I also went to great lengths to look like a responsible patient.
Though I’m ashamed to admit it, I’ve been mistreated and accused of drug seeking so many times, I often dress up when I go to the doctor’s—unless it’s someone who is familiar with me and someone I trust. Then I break out the sweats but still rock the makeup. 😉 I want to stress here that I know people who struggle with substance abuse are patients, too—patients who deserve medical care and kindness and respect. So many doctors make assumptions about chronic pain patients, too, which often makes it difficult for us to get those same things that we also deserve. No matter what the patient’s experience, they are a person who should be treated like a person. It’s a messy, outrageous issue that calls for an entire blog post of its own.
I brought a notebook to takes notes in and my agenda so that I could schedule my next appointment. I gave myself a pep talk and even wrangled Mike into coming with me for support, because just his mere presence eases my anxiety. Those blue eyes and the warmth and kindness that he radiates are 100%-natural Ativan, you guys. We arrived a few minutes early. I smoked a cigarette to further calm my nerves. Then we went in.
I checked in as usual and then waited a little longer than normal to get into an exam room. Or maybe it just felt longer because I was so anxious. I’m not sure. Dr. M’s medical assistant was the same woman, which was a huge relief. She took my weight, pulse, and blood pressure, as always. We went over my medications and I let her know that the SSZ wasn’t working out so I’d stopped it. I admitted I was nervous about meeting Dr. S but she assured me that he was very nice.
And he was. He was soft spoken and very gentle during his physical exam. But he completely ignored everything that was in my chart, everything that Dr. M had told me. He brushed aside my questions. He insisted that I couldn’t possibly have arthritis because my blood work is negative. He told me that ERA would also show up in blood work. When I asked him questions and explained that Dr. M had told me otherwise, he brushed me off. He told me that I probably have fibromyalgia—something I’ve heard a thousand times from other specialists who either couldn’t figure out what was wrong or didn’t want to listen. When I explained—patiently—that I’ve been determined negative for fibromyalgia several times because I do not have the tender pressure points, he brushed me off.
I know several people who have fibromyalgia, who have told me that their experiences are completely different from mine. They have muscular and nerve pain, not joint pain. I have joint pain, not muscular or nerve pain. And when I tried Neurontin, a medication for fibromyalgia, I had an extremely adverse reaction to it. I asked Dr. S if fibromyalgia affects your joints, and he gave me a completely hedge-y answer.
He also kept asking about my Tramadol prescription. He asked me like three times where it came from. (My primary care doctor prescribes it, and it is a low dose—only 100mg at bedtime.) Dr. S kept pressing me to consider a pain management clinic.
If the word fibromyalgia turns me off, pain management clinic really makes me tense. I’m sure they help a lot of people, just like I know fibromyalgia is a valid chronic pain illness of its own. But I do not want hard painkillers because they are only a temporary solution to my pain. Plus, to be totally honest, they hit me too hard. I can’t function on them. I’ve only ever wanted a DMARD because they are a long-term treatment for my arthritis. I’ve literally never walked into a doctor’s office and asked for pain medication. NEVER. Because not only do too many doctors automatically assume that’s what chronic pain patients are looking for, but because it’s an automatic death sentence if you have a chronic pain illness and want to be taken seriously. In fact, I’ve asked to be taken off both Percocet and dilaudid because I did not like how they made me feel. It scared me, for example, how quickly my oral dilaudid dose stopped working and how I had to increase the dose literally the second time I took it to the prescribed two tablets a day—when one had worked fine the night before. I told my PAC at the time that I just wanted to go back to Tramadol.
But at that point in the visit, I couldn’t articulate any of this to Dr. S. I just sort of froze. Tears were at bay and it was all I could do to not start sobbing in the middle of the exam room. Panic closed in around me and I could barely breathe.
Dr. S said something about running blood work one last time, but that I can’t possibly have arthritis and it’s probably fibromyalgia. He told me that he didn’t want me to take SSZ anymore, that I didn’t need those medications. And he again recommended a pain management clinic.
I couldn’t get out of there fast enough.
Tears were rolling down my cheeks as I hurried out of the office. Running down the stairs, I focused on sucking down the rest of my iced coffee because it helped hold the tears in. By the time I hit the parking lot, though, I ran out of coffee and was sobbing. I was walking so fast, my body so pumped with flight adrenaline, that I couldn’t even feel my normal joint pain—and Mike could barely catch up. I tried really hard to keep it together, but I could barely get the words out to ask for a cigarette. As I lit it, I completely broke down. Mascara lines down my face and everything.
Hello, full blown panic attack.
Once it was over, this weird calm numbness washed over me. I’ve never experienced that before. It would be super cool if panic attacks could always end that way. I focused on helping a much-loved family member with her own doctor appointment. In a way, it was kind of good that we had back to back appointments in separate towns. In my numb state, I was calm enough to be there for her and it also took my mind off things.
But of course, it didn’t last.
Wave after wave of anxiety hit me once Mike and I got home, even though I’d taken pain medicine, which always helps relax me in both body and mind. It didn’t this time. I’d had a headache all day because I was nervous, but it intensified as the day went on. I’m pretty sure it was a mixed tension migraine because by 10pm, I was nauseous and had light sensitivity, plus my neck and shoulders hurt. Even though I tried not to, I kept bursting into tears, which of course made the throbbing pain in my head worse. And my joint pain was also sassy.
Between that and my mind racing, still trying to process everything, I didn’t sleep. I felt completely lost and even though I didn’t want to give up, couldn’t see any other option. I’ve exhausted every resource. I’ve seen every specialist possible. I’ve literally tried everything.
I spent most of today in a numb stupor. Mostly out of fatigue but also because I couldn’t wrap my head around it. Mostly I focused on helping my family, which also ended up being a huge help to me because I couldn’t wallow.
By later this afternoon, though, I started to feel incredulous. Indignant. Completely fucking pissed. I realized that I deserve better. That, just because Dr. S is a doctor, I don’t have to take his word as gospel. And it is not at all okay that within minutes he undid everything Dr. M did for me—everything I’ve worked for over the last decade. I’d really started to make progress with Dr. M and DMARDs were helping me get my life back. How dare he waltz in and take that away from me.
I decided that I wasn’t going to let him.
As I drove to pick up Mike from work, I realized that I needed to go to bat for myself. I was not going to let this doctor make me feel this way. He might be a great doctor, but he clearly wasn’t the right doctor for me. I decided, as soon as I pulled into the parking lot of Mike’s job, I was going to call the office and complain. Make my voice heard. Insist that I start seeing one of the other rheumatologists in the practice. Make them understand that it was not okay for him to treat me like that.
I was so proud of myself. More and more lately I am rediscovering my voice—and using it to advocate for myself. Not rudely, but loudly. Strong. Steady. Calmly. I was so excited when I slid into a parking spot. I grabbed my phone and speed dialed the office number. It rang and their normal announcements began.
“You’ve reached the offices of Dr. C, Dr. P, and Dr. M. The office is now closed. Please listen carefully as our menu options have changed…”
I felt my heart sink. I’ve never felt so deflated so fast. It wasn’t even 4pm yet, and their office hours have always been 8am to 5pm, Monday through Friday. It felt like someone’s sick joke.
I’m still angry, but I’m also exhausted. These last couple weeks—and especially the last couple of days—have drained me physically, emotionally, and mentally. I’m so grateful that the weekend is here, that I can unplug from social media and just relax. Cleanse. Give myself love.
And then, first thing Monday, I’m making that phone call again.